Question On Dextroamphetamine-sulfate

[mayray]

I would have liked to know about dextro. It seems to be a popular thread with many people responding so why would you close it? Kind of like closing a theater when a movie sells out.:woohoo:

[justice4j]

I'm with you! I am waiting with very baited breath to try dextroamphetamine sulfate. My wonderful doc is presently researching this and will give me an answer soon.

I can't wait to hear again from NGazzero how's she's doing. AT SIX MONTHS, SHE's "98%" out of pain.

Please continue to respond to this NEW thread. There is a 7 page amount of interest in this subject matter.

Thanks to all who are/have been willing to give info on this another possible treatment for those of us STILL having difficulties with IC, IBS, FIBRO and PFD, just like what NGazzero has "98%" recovered from the pain of and REDUCED the amount of her RX costs, as well as saving the load on her liver from multiple medications.

The Dextro thread is the one that interests me and 7 pages of others the most. I'm so happy someone started a new thread with this subject matter.

NGAZZERO PLEASE respond when you can. Know you are busy ENJOYING life "98%" pain free. Please keep us updated!

Thanks so much for the original and all posts on this Dextro important subject matter.

I would never have known about it if it weren't for Charisse and NGazzero. Thanks everyone.

Wishing us all "98-100%" symptom free days always!

Love, Peace, Joy, Harmony, Hugs, and GREAT Days,

[ICNDonna]

When I closed that thread, I included a post that it is fine to reopen the subject. We do have many members with dial-up internet service and when a thread has 100 or more posts, it takes an extremely long time for those members to be able to read it.

I'm sure you will get a response to your questions.

Donna

[ngazerro]

Hi Janet & Mayray,

Thanks so much for your support. I do plan to keep everyone updated. I do believe the dextro can help a lot with IC. It might not be for everyone but it sure gives you more choices. It is still doing wonderful for me.:smile tee

Nina

[justice4j]

Nina,

Thanks to you, my wonderful gyn is going to call Hubbard's Clinic Monday when she has a break between surgeries!:woohoo: She and I have a long standing - 12 years or so- rapport and she just wants info b/c this isn't something she's tried before. Since it's a Scheduled drug, and she is unfamiliar, her concern is logical.

Thanks again for your intelligent posts that led me to seek an Rx for Dextroamphetamine.

You and I have Fibro, IC, PFD and I think IBS if I remember your profile correctly.


Did the Dex in any way aggravate your IBS? I was wondering because I
I'd also be interested in your comments on Zanaflex. My IBS is kicking up. Since Dex is a stimulant, have you had trouble getting to sleep? What is your opinion of Zanaflex as far as its effect on IBS?

If my memory is correct, Zanaflex is a combo of Librium (a tranquilizer) and an antispasmodic something like hyoscyamine (Levsin). That is next on my list for requests for Rxs.

It would seem that Dex during waking hours and Zanaflex at bedtime would be an ideal combo. Does the Zanaflex help you sleep? That alone (I know you know this) will help Fibro immensely. I was told that there were experiments done years ago depriving people of sleep and that would reproduce Fibro symptoms in HEALTHY people! Sleep is so important and so many of us have issues with that.

:dance:You've got really good doctors! That isn't by accident. You've empowered yourself to find them, and I know sometimes that isn't easy. Living in a larger metro area helps, but still.....kudos to you for empowering yourself to fight your diagnoses with good care.

My mother and most of her side of the family live in Louisville. My dad is in a nursing home (92 y/o) in Louisville and my mom became friendly with the family of another patient. The other family's granddaughter is also a Hubbard's Clinic patient with IC!

I'm also taking LDN, which I feel has been helping, but I am not at the 120 days of optimal dose mark and still am having some problems. I was taking Imodium, but there is some evidence it may interfere with LDN by crossing the blood brain barrier. Theoretically, LDN up regulates the immune system to calm down the microglial cells researchers suspect (as my Standford researcher email buddy and Dr. John Hong say) is the cause for many "mysterious, chronic disease."

To summarize what I've read about microglials, they are in the brain and spine and "patrol" these vital areas for any assault to this part of our anatomy. Only, sometimes a patient's microglials go crazy and become "overactive." If anyone else know anything about microglial cells, that would be interesting to learn about as well.

My thought is that so many of us have multiple diagnoses and several like IBS, Fibro, PFD, VV, etc. which seem to be common in many IC patients. This causes me to wonder, like many researchers, what is the commonality and real underlying cause of all these co-existing diseases? I personally believe it just doesn't make sense that IC is one disease.

Although we all know that everyone with IC is different, Nina, you and I have 3 diagnoses in common, which was another reason that your post caught my eye. :bow: Additionally, you write intelligently about your experience which will, I believe, eventually get me an Rx for Dexedrine.

I am the queen of sensitivity to meds. I'm trying Elavil over the weekend basically because I'm waiting for the Dex Rx. The Elavil is helping, but I'm only taking 5 mg. Years ago I think I tried 10 mg. and was Ms. Zonko and woke up with a h/a. Yesterday, I awakened with a h/a like the ones you get from being a little dehydrated being out in the summer heat. Today, it's less.

Nina, congratulations on the 6 months of getting your life back. :woohoo: I sense that you are like many of us; we will kick, scream and fight our way out of this by finding the right combo of treatments, working in partnership with our doctors.

Here's a cyber Medal of Honor presented to Charisse, :angel:for finding out about Dex, and to :angel:Nina for further informing us about her wonderful progress.

Nina, I couldn't be happier for you and all the other IC, etc patients who have begun the processing of getting your lives back.:smile tee

THANK YOU!

[ngazerro]

Janet,

Thanks so much for your post. I really hope mine will help someone else. I am so grateful that The Hubbard Clinic is my group of doctors and they have helped so much since my dx. of IC. My main nurse is the greatest. She has hugged me when I was crying because of lost hope and always gave me my hope back. After taking the dextro for a couple months, I was in the office and all the nurses were hugging because they could not believe how well I was doing. They were all so happy for me. What a great bunch. I am lucky to have them.

That is neat your mom's family lives in Louisville. It is a nice place. I have only been here for about 5 years, but it is now home to me.

I do have IBS, PFD, Fibro, Raynalds, and IC. The dextro seems to help my IBS sometimes, but never has made it worse. I don't have any side effects from the dextro. I sleep fine most of the time, but when I don't I believe it has to do with my fibro. Yes, my fibro kicks in when I don't sleep well at night. Being able to add exercise back into my life has helped with sleep and stress. I never take the dextro late in the day, that way it does not bother my sleep.

I do Zumba, 3 to 4 times a week at night. Zumba is a dance exercise class that is so much fun. It's alot of moving your hips and dancing without a lot of hard impact on your joints. Being able to do Zumba has blocked out my depression of having all those diseases. Six months ago I never thought I would be able to exercise again.

Don't get me wrong, I still have days when I feel like the the fibro is kicking my butt, but it happens a lot less now. When it does happen, it's ok because I now know it will pass and I will be back to my exercises. My IC really does not bother me anymore. (for now) My worst IC day is I feel a pain in my bladder which only last a couple minutes. It just reminds me my bladder is still there.

I actually stopped taking my zanaflex about two weeks ago. I wanted to see what happened if I did. So far I have been fine without it. It really did help me a lot in the past. I hate taking any meds, so if I can do without them I do.
I don't take my dextro on Sundays either. My bladder is fine with that. It is my day to relax before a new week.

I too have a lot of sensitivity to meds. I think that is why taking such a low dose of the dextro has helped.

That is interesting about the microglials. I have never heard that before and I am going to look it up. Thanks for the information.:smile tee

Please keep me updated. I get so excited of the thought of someone else beating this crazy disease.

Thank you again!!

[justice4j]

Nina,

I hope you won't have to take Zanaflex again. You know, so many of us are on multiple meds and that is so hard on your liver. My endocrinologist runs liver enzymes with my thyroid lab work. I should get some milk thistle....

I am going to be in Louisville Christmas this year. The best present I could ever receive is having most of my life pain free. You and Charisse may well have started me down that path! Keep fingers crossed, good healing energy, prayers whatever that my Dr. will feel comfortable Rx the Dex. You don't take Elmiron anymore either?


My mother is 86, still drives and very safely, keeps her own house and is pretty sharp still. I probably talk to her too much when I'm going through H with this stuff, but you know how it is....your mother....if you're close like we are there's just no one else who is quite the same. My nephew was just diagnosed with narcolepsy, so we are all worried about him too. I'd love the have the gift of a solution for this as much for my family and friends as myself.

I am lucky to have several friends to talk to too and a wonderful SO.

And, I am so lucky to have found you on this board!:bow:

It is exciting to think about helping anyone out of this black tunnel:smile tee
I really am more frustrated with the pain than depressed.

I had a good day yesterday, but some symptoms today. It's the urethral stuff from PFD that's driving me nuts right now. I've only been taking Elavil 5 mg. but will probably up it to 10mg. tonight. Sigh.....

BUT...it's MONDAY tomorrow and I could well have the Dex in my hands by Tuesday. I hope I hope I hope.... How many patients are on Dex at your clinic if you know?

Also, what brand of Vitamin D do you use? I'm out of a lot of supplements and ordering online from a place with great shipping and cost effective prices. If you'd like the name of the place, PM me or better jans88s@yahoo.com

[justice4j]

Nina,

Could you please confirm how much Vitamin D you are taking? I need to order supplements soon. In your signature line it says "5000 mg." When I look up Vitamin D supplements it talks about IU so I'm confused. Most of the supplements I read about are 400 IU.

I'm not thinking I necessarily need as much as you, but my nutrition is not what it should be with IBS lurking about. LDN seems to be improving it, but for any of us to have a chance to heal, we need the best nutrition possible.

[ngazerro]

Good Morning Janet,

Good Morning Janet,

I hope that I don't have to take the zanaflex anymore either. At least not everyday. Maybe just as needed. I have not taken Elmiron in six months. I have stop taking my Atarax also. I use to have to get rescue instills once a week, but have not had one of those in about three months. After I started the dextro I went from weekly installs to monthly, and then none. Last year we tried the DMSO instills. I think we did a total of eight, which ended up with more pain after each one. We tried the electric shock probe for my PFD, and I did not get any relief from that. My PDF got better after my IC got under control. I use to have tons of pain in my lower back and I could not sit, or stand long. Not tensing up from the IC pain all the time, my PFD has been great.

Last year, between the fibro doctor and IC doctor I was taking at the least 16 pills a day. I walk around like a zombie. My relationship with my husband was getting strained do to the fact I was miserable and in such pain all time. I wanted to get a divorce just to be alone. I felt like I was bringing everyone else down. I sure everyone can relate to those feelings. My boys had a hard time understand why I was so tired all the time and what was happening to me.

The dextro changed my life. I almost did not try it because I was so sick coming off the cymblata. I missed a week of work. It really messed me up. After that I almost just gave up. I had tried everything and it seemed like the side effects were getting worse than the IC, & fibro. When I got my script for the Dextro I sat on it for days because I didn't want to try something else. I am glad I did.

There is alot of controversy about dextro being scheduled drug. There is a risk of addiction. I do believe it's not right for some people, and might not even work for some. It has worked for me and has given me my life back. I post because maybe it will help someone else. I can't say what it is going to do a year from now, but I can say at least I am having a somewhat normal life for the time being.
I hope it can help you.:smile tee

Your right it is IU. I am now taking 4000 iu. Which is high. I had my D checked by the rhuemy about a month ago and it is now at 54, instead of 15. I also try to get more sun, seems to be working because I forget to take the D alot.

I am glad you are coming to see your mom. I pray that you are pain free at that time. I am driving to Memphis to see my mother this weekend. She is my best friend!

Please keep me updated.

Nina

[justice4j]

Nina,
Thanks so much for the update! I ran to the computer first thing (I stay up late and get up late) so it's 11:26 AM PDT.

I took 10 mg. of Elavil last night instead of 5 mg. 2:3 days I've taken it, I've awakened with a dull almost sinus like h/a. I think from the drying effect....

Cross everything and pray that my doctor gets in touch with yours today. I hope they have time to take her call. She's going to call in between her surgeries this AM.

You are the best to take the tiime to keep us updated so well.

I feel like the tension from IC pain resulted in PFD and that if I can get both knocked out with something or some combo of things I will be just fine. I've had 2 year periods of almost complete remission a couple of times. They were spontaneous and who knows what was the happy cause.

Thank you so much again.

[justice4j]

Nina,
I called Hubbard and left a message that my Doctor from California would be calling and could he please speak to her. Dr. Hubbard is in surgery today too they said. So, it's unlikely that he will even return Dr. Towbin's call until tomorrow at the earliest since it was 2 PM EDT when I called Hubbard Clinic. I told them I knew you from the ICN board.

If I can't get the Dextro from any doctors around here, I'm going to fly back to Louisville and see if they will give me my initial Rx.

How closely did they monitor you at first in terms of follow up appointments? I do instills at home and although it helps, it is costing me a fortune for the 4% Lidocaine.

I wrote Hospira, the only manufacturer of 4% Lidocaine, asking for their help and their reply was we don't have any programs in place to help people who cannot afford Lido 4%.

I have PAP for Elmiron and use it for 2:3 instills I do a day. And I'm doing Heparin in between.

Just called my uro who doesn't Rx any controlled substances and refers everyone to pain management.

Now I'm getting really upset. I can't seem to get anything done....

Just

[dngwic2]

I just found this thread and the associated past discussions. I've got a lot of reading to do. I'm floored by the possibility of no pain. I just discussed my pain issues with Dr. Parsons this past Tuesday and he also will not RX pain meds. My insurance is:rant:just peachy. Need to go read.
Later, Jacqui.

[justice4j]

Hi,

Dr. Parsons is my uro too. I called today....they won't touch it...:shake::headbang:

[dngwic2]

Hi J56, What's up with this? Who do you see for some relief? What are you doing? Parsons said see a pain management Doc but I don't even know if my insurance will cover it. I will look into it but right now I am sad and upset about SSDI denial. Know a good lawyer out here in the IE?
Jacqui.

[dngwic2]

Sorry I see you have address some of my questions. Bad brain fog today, can't think. Pain high and sick to my stomach. Just want an hour pain free.
Jacqui

[justice4j]

Jacqui,
Email me at jans88s@yahoo.com. If I put the website addy up, it may be considered "advertising."

I presently have a case with the law firm I'm speaking about. They are the best around for cases against insurance companies. They handled the Holocaust survivor case which is a landmark. If they don't do SS work, they would refer you to someone who did, and I'm not sure if they do or not b/c that is not the focus of my case.

One of their clients, who was denied treatment for her breast cancer by her insurance company, was awarded 9 million dollars. You may have seen it on the local news - the clients name is Phyllis Bates and she has her own beauty salon in LA somewhere. Fortunately, she received breast cancer treatment from a charitable organization and lived to successfully sue her insurance company for denial of care (breach of contract --> bad faith insurance) due to a false recision of benefits from a trumped up pre-existing condition which had nothing to do with her breast cancer.

You can probably find the case on line. It is called "Phyllis Bates v Healthnet Insurance" I think.

Hope that will help you. PLEASE don't PM me here. My box gets so full so quickly.

[justice4j]

Jacqui,
I don't think Dr. Parsons will Rx any controlled substances - meaning narcotics.

I think - only MHO- that since he has thousands of IC patients, he refers out for pain management.

I'm looking into flying back to Louisville, KY to go to Nina's doc. My mom lives there and if that's what it takes to get to try Dextroamphetamine, that's what I"ll. Do I spoke to the clinic today. If I only have to have one appointment and not stay too long - like 3-6 weeks- and they will let my doc here monitor me and continue Rxing it for me that would be a solution.

Meanwhile, I'm running up my pharmacy bill again. I'm doing instills with 4% Lidocaine and 2 weeks worth is about $46.00.

I hate spending money on medication. It's no fun.:rant:

[justice4j]

Jacqui,
I didn't read page one....so DUH fog for me too.:help:

[barbclay]

Hi Guys, I have been on Dextro for about 3 1/2 weeks. I did have to get it from my family doc. My uro wouldn't even look at the info I brought him because it was a controlled substance. I feel this is very frustrating because if it works , how will he know and how can he help others? The dextro has helped me sooooo much. With my IC and with my fibro.I was taking Lyrica and I hated how tired it made me. As if I wasn't already tired all the time. I have quit taking all of my meds except for the dextro and some pain meds for breakthrew pain. My husband and I were in Chicago this past weekend, and he could hardly keep up with me!!!! I felt GREAT and we did so much walking. I have had that feeling of a bowling ball in the pelvic area the past two days, but I feel like it is nothing like it would have been before. I have been doing things I haven't done in a while like mowing the yard. And it is so nice to have my energy back. I really feel like a "normal healthy" person again.I have even lost 8 pounds!!!!!!! I feel this has helped me sooo much. But, I am holding my breath-I hope this is a long term thing. I have learned not to get my hopes up. But so far this has been wonderful:woohoo:

[Mothergoose]

Barbclay

I was reading your post I am very happy for you and your success. If you don't mind me asking what doseage are you on and is that what you started with.

Mothergoose

[barbclay]

Mothergoose- Hi, I started at 20mg 2x a day. Since I did well on that, he changed it to 30mg 1 x a day-it is an extended release. Barb

[SWhit]

I tried the dextro last week and I felt it working the first day. but then after the fourth day of taking it I got progressively worse, and now a week later I feel worse than I've ever felt. It's so strange. I was really optomistic, since it started working so fast. I was taking the capsules, which have a lot of additives in them compared to the tablets, so I was thinking maybe I am having a sensitivity to the additives in the capsules that is causing this flare up.

[Mothergoose]

Sorry to hear you are having problems with it, I am sure you have ruled out anything else that maybe causing problems.

Mothergoose

[ngazerro]

Swit,

I take the 5mg tablets. I take twice a day or just once a day. Mine are not extended release. Some people do well with the extented release but I like the regular better. It might have been something in the capsules. Sorry you did not have any progress.

Nina

[mayray]

We are all entitled to our personal opinions on this site. I do know in my case, and in many others suffering from IC, that if things are really bad one is willing to try anything that may help (with a doctor's consent, that is:angel:). One person's remark that "dextro amphetamine" (speaks volumes; I dont think I would consider this) is just that her opinion. Obviously, you have found relief while others have not. The only person whose opinion really counts is a qualified doctor who can talk about using this drug, short and long term effects, and what it can do to help IC. I have found remission with elavil but many have not and I can remember the days when I would have tried anything within reason to get my life back. To those of us who have found relief, DONT FORGET ABOUT THOSE WHO HAVE NOT, and be willing to keep an "open mind" about new things on the market. Remissions from IC can end and to those who shut out using a particular drug you just may try it if the pain returns. I thought that was the purpose of this site, to open up on new methods and how they may help those that are still searching for that "miracle" to get us through. God bless those who have found relief thru dextro amphetamine.

[justice4j]

Mothergoose and MayRay,

I think your opinion and that of others like yours, just plain ROCKS!:woohoo::bow:

IC patients are as different in their personal approaches to IC, their lives and personalities as individuals without IC. All IC patients and their healthcare providers have to work hard to reach Remission Lane. There are many, varied routes, and we all have our opinions of the way to arrive there via our own particular style..

For me, the most beneficial aspect of checking this site numerous times a day, is to view information about new, cutting edge treatments, such as Dextroampehtamine Sulfate. Some of us are more comfortable trying new treatments that are controversial than others. Either opinion is correct, if that is what is comfortable to that particular IC patient.

All I can say is that I will never ever stop in my quest to try this new treatment, until a respected Dr. tells me it's contraindicated in some way for me. I have PLANS A, B, C, and D in mind. I am so grateful that I somehow wound up with an iron will :evilsmileto get things done that are important to me.

I don't know how I would have ever coped with IC and the now 8 other ridiculous "Dwarfs" I find myself contending with. I'm also grateful that my case, though complicated enough, doesn't come near some of what others suffer. The suffering, because I'm a former RN, makes my heart break. Especially those of you fighting with insurance companies to get your care and/or not being able to afford it and suffering more. That is just not right in this country ----not a political statement----a statement of ethics and morality.

I hope many people find this thread, continue to respond to it, and allow even more information to be disseminated.

Love, Peace, Joy, Symptom Free Days to All,

[Wolfe]

I too agree with everything you're saying here. Just as I wouldn't push people to try something they were uncomfortable with, I also would hate to deny anyone something that gave them relief.

What I can't understand is why doctors, who see people in pain every day, all day long, don't feel the same way. Why, when you find the possibility of help for your longsuffering, do so many doctors refuse to listen? Fear of malpractice?

I once asked my GP about Mirapex for my Fibro, which is off-label but frequently used. He said he would look into it. (I left him research.) When I saw him again and asked again, he became angry and walked out of the room. He never saw me again. I think what stunned me the most was his closed mind. I think of him every time I see the Mirapex commercial, because these days they prescribe it for Restless Legs Syndrome, which I also have.

I feel sorry for people who are so afraid, and if it's insurance companies who cause them to be that way, how sad is that? Can't we even discuss, refer, compromise??

Besides, how many people are walking around us right now taking all kinds of things we don't know about, some of them illegal? The bus driver? The store clerk?? No one who passes me on the street knows what I'm taking and judges me for it. I don't have a big Tylenol label on my forehead.

[c2miracle]

:flower: AMEN! :flower:

[justice4j]

Hi Nina, MayRay, Judy, C2, and Everyone Following this Thread,

Judy,

To ask for Mirapex as an OFF LABEL RX is such a BENIGN REQUEST! When I told my ENDOCRINOLOGIST I had symptoms of RLS, he immediately Rxd Mirapex! I didn't even ask for an RX!

My experience with Mirapex was not good- I had a terrible headache that felt like a tension h/a from the back of my neck and the whole front of my face. It's very similar to the one I get from ELAVIL, WHAT I'M STUCK WITH NOW WAITING FOR ONE OF MY DOCTORS WHO ALL KNOW I'M NOT IN DRUG SEEKING BEHAVIOR MODE TO AGREE TO RX Dextroamphetamine.

I completely feel you frustration-- 3,000 miles away. I'm sure you're now looking for a more empathetic Dr. Is there anyone maybe in Roanoke? Maybe if there's a Fibro and/or IC support group near you, they may be able to recommend someone. It's so difficult starting over with a new Dr....but yours failed EMPATHY 101. I am so sorry

Maybe that Dr. needs an anger management class! What, he couldn't just spend a little more time with you and bill you for an intermediate consultation?:rolleyes: Mirapex isn't a controversial drug like a narcotic or amphetamine. REQUIP is what I take for RLS, and it is a lower dose of a drug given for Parkinson's Disease in higher doses.

Having had a 17 year career as both an ER RN and OR RN, there are some Dr.s and nurses, I hate to say, who get burned out from the stress and block their original feelings/reasons for joining the ranks of healthcare professionals.

I remember one patient who was a long distance truck driver suffering from terrible back pain. He waiting until he returned home, and sought help from our ER. The Dr. on duty was afraid or something to give him more than Demerol 50 mg./Vistaril 50 mg. and the man even had his medical records with him so we would know he was a legitimate back pain sufferer with a h/o a truck accident. My head nurse and I made a decision that we had to jointly convince this Dr. to up the dose. This particular Dr. was really a good ER Dr. ....I don't know what his problem with this patient was, but our patient got what he needed.

Now, because I haven't been able to convince my Dr. of 10-12 years to Rx Dextroamphetamine for me, I'm looking at about $700 to fly to GA where there is a Dr. who doesn't have a problem using Dextroamphetamine off label for an IC/PFD patient desperate to get her life back. And....doesn't that describe us all?

We are living with chronic pain, we need relief, we want to eat and drink foods, juices, etc. like someone w/o IC. We want something so simple - a life where our pain is managed so that we can enjoy our friends, family, animals, activities and all the things that life holds for someone able to fully engage in it.

And...PART of what STANDS IN OUR WAY ARE DRs. WHO REFUSE TO LET US GIVE A CUTTING EDGE TREATMENT A TRy! I have several Dr.s, like many of us, and all are brilliant and up until now with this RX request have given me anything I've asked for to fight this disease and my 8 other "Dwarfs."

As an RN, sometimes I would just get so frustrated at work and in my personal life when I had to get an RX that I could have written myself if it were legal. Instead, I'd wait around for the right Dr. to come into the ER, get a "curbside consult" and usually the RX I needed. Otherwise, I was stuck making appointments, waiting in the waiting room wasting my time...

There just should be a CHRONIC PAIN PATIENTS' BILL OF RIGHTS!

I am truly sorry for what all of us are going through just to try and combat a really difficult disease to live with.:rant:

Then, their are those whose lives have been torn apart by this disease b/c their family and/or "friends" think just b/c there's not VISIBLE illness we are crazy, just want attention, or just "like" pain meds. There is such judgement about chronic pain patients.

When I asked for Dextroamphetamine, I GAVE my DR. a LIST of BOTH PHARMACIES WHERE I GET ALL MY RXs ALONG WITH THE NAME OF MY PHARMACIST AT THE MAIN PHARMACY I USE AND PHONE NUMBERS AND ADDRESSES TO BOTH. I STILL AFTER ONE WEEK OF WAITING DO NOT HAVE EVEN AN ANSWER OF YES OR NO TO MY REQUEST! SHEEEEEZ

[Wolfe]

Janet,

I feel your pain, LOL.

I did go see a rheumatologist, who did prescribe the Mirapex for me, but it pretty much did the same thing to me that it did to you. I think it was too "big guns" for me, but there was certainly no harm in trying. Or referring me to someone else.

Probably the worst part about that experience is that I was near tears. I was very sick, something was very wrong, and I told him that and said, "I need your help." He said, "You see the rheumatologist in February," and I said, "I'll be dead by February." That's when I asked again about the Mirapex, and he got upset.

When I got home, I thought it through, and got on the Internet. Turns out my weakness/dizziness was suppressed blood pressure from the Doxepin. HE SHOULD HAVE CAUGHT THAT. I was fine as soon as I stopped the med. But you can bet, I didn't want to see him again either.

Janet, it just seems to me that if your doc is not willing to try the treatment you want, that he would consult someone else, refer you to someone else, or call someone in on a consult. Even if his motive were to convince you against it, how difficult would it be to bring another medical professional in on the discussion? I just don't get it. Even my 12 -year-old knows that if he's losing an argument, call his dad in for reinforcement, LOL.

Since you have a medical background, while you wait for your trip home, maybe you know of a doctor/former colleague you could invite to coffee (don't drink any!) and ask for advice. Just advice. That's what I do with my husband. I say, "What should I do about this?" and then he takes care of it, LOL. It's much smoother than asking him for help. I have done that with doctors. "Okay, then tell me what to do. I need help; tell me where to go." I told my PCP, "You either have to help me find an antidepressant I can take or help me explain to SSI why I can't function." (Of course, her answer was, "You're too young to apply for disability," so I had to take matters into my own hands AGAIN and ask for a referral to a psychiatrist who DID help me!)

Janet, you will be in my prayers, that you get the medication you want and that it works for you. Please be sure to keep us updated on your progress. I wouldn't be afraid to try another "big guns" medication if I needed to, and it's so wonderful to read personal experiences here.

Wishing you wellness.

[justice4j]

Hi Everyone,
Judy, thank you for your words of encouragement. You lifted my spirits.
It is so frustrating to be a nurse and get this stupid run around after being the patient of 2 Dr.s for 10 years, never exhibiting drug seeking behavior, providing contact info for my 2 pharmacists, one of whom has filled my Rxs for 10 years.

I'm half asleep and dragging from Elavil. I hate it. I want my life back. Is that too much to ask?

Does ANYONE know of Dr.s in the southern California area who Rx Dextroamphetamine? That would save me the $700-1000.00 I don't really have to shell out to go to Georgia to get this promising med.

I'm desperate. Can anyone PLEASE help?

Thanks,

[justice4j]

That coffee venti serving HELPS. Of course I take 4 Prelief with it.

But then, I'm alert, have a little bit more energy, a stream that is close to normal and I urinate about 180 cc.s To me that is encouraging to try another stimulant.

I'm a weary soul due to this and I'm starting to get mad....:cussing:

[Wolfe]

Janet,

Gosh, I love coffee. It helps the pain meds kick in, LOL. When I was first sick in 1990, I would snap a Vicodin in half with a capppuccino and have enough energy to clean the house! That was before I knew about the whole bladder thing.

You seem to have a very strong feeling that the dextro is going to work for you, and with the Internet, there has to be a way for you to find help closer to home. Do you know anyone in the psychiatric field? Would it hurt even for you to see a pediatrician? (They give this stuff to kids like it's candy. And to all the ritalin children who are now in their 20s and 30s.) Someone will know someone, and it will save you a lot of money. Tap into that same instinct that is telling you that the dextro is for YOU, and figure out what you can do closer to home.

I'm in your corner and following your adventure. My bet is that you have a script in your hands in a couple of weeks.

THiNKIng PoSiTive!! :smile tee

[justice4j]

:smile tee

Judy,

I had a bad day with IBS, so your email made me feel better. The IBS had been behaving for about a month. I think I can't have milkshakes...no biggy..

I have an adult piano student who sees a PSYCHIATRIST and HIS SPECIALTY IS TREATING PEOPLE WHO HAVE A HOST OF WEIRD DISEASES! That would be mois. One of my close friends says I am a Dr. House case. I now have 9 diagnoses. Of course, I don't think they are individual diagnoses at all. I think that, for all of us with multiple diagnoses, there's some autonomic nervous system malfunction at the root of all of it.

I also think that is one reason some of the brightest minds in research don't know what "causes" IC and the co-morbid diseases that some of us have.

The PSYCHIATRIST IS IN SOUTH ORANGE COUNTY WHICH IS NO MORE THAN AN HOUR FROM ME!

My student had a bad h/a today and probably went home to rest, so I don't have the contact info for the PSYCH but....I'm getting closer. My student thinks he would have no problem trying Dex.

I had thought of a psychiatrist being more comfortable with Rx for Dex, but my psych/pain management guy has not responded with a referral, etc. He must be out of town or something b/c it isn't like him to not respond.

Only worry with the psychiatrist in south Orange County is that my student says he likes to have a lot of blood work drawn:rolleyes: More expense...I have a high deductible that I never meet, so labs are out of pocket to the tune of about $600-700/year, and of course good old Blue Cross of California doesn't count office co-pays and the like toward the $1,500.00 deductible.

Well, the good thing is even if I end up spending just what I would have to go to GA or KY in total, this will be incremental.

I'm close.....Judy....thanks for your wonderful support.

[Wolfe]

I think you're on the right track. It's tough to go to a new doctor and ask for a scheduled med, but maybe your own mental health professional will get back to you. Pain clinics seem to have trouble giving pain meds, so where else are you going to go? Give his office a call again. Maybe the message got lost, the person who answered got fired, the roof fell in - who knows? A thousand possibilities, but you only need ONE return call - the right one.

Crossing my fingers!

[justice4j]

Hi Judy and Everyone,

I made the call to the student's psychiatrist this morning. No call yet.

Still no call from my gyn. She gave me Elavil, and I think is just stalling hoping Elavil will work. I HATE ELAVIL! I wake up with a headache every single morning on only 10 mg. I drag around for hours.

Then, my wonderful SO gets me coffee and about an hour later I'm only semi-comatose.:smile tee

To those of you GASPING LOL it's always preceeded by 4 Prelief, sipped slowly and with great enjoyment, and several more Prelief along the way.

It's probably obvious by now that I'm okay when there are still things I can do to get this ball rolling, but now I can't think of another thing other than what I've been doing today.

I've emailed back and forth with a wonderful NP in Georgia who has called my uro, Dr. Parsons and left his NP a message regarding the Georgia clinic's success with Dextroamphetamine.

Next, I emailed a few posts from this list about those of you having succes, minus your names of course, to Dr. Parsons nurse and cc'd. them to the NP in Georgia.

.BTW, IF ANY OF YOU ARE IN THE ATLANTA, GA area, I would highly recommend Dr. Denise Pecht and Dana Bell NP. Dana is the NP who's trying to help me find a way to get to try Dextroamphetamine. She is wonderful.

NOW THE VERY WORST PART.....WAITING WHILE IN PAIN.:loco: IT's more the PFD and I have half a mind to seek out a sports PT b/c the pain is mostly in my piriformis muscle - you know- the one where the end of your lower back ends and "intersects" with the upper buttocks, almost to the sciatic area?

Everyone, send me some vibes for patientce, healing and success in this. I'd really appreciate it.:bow:

I'm not even good at waiting in line at the bank.....

[Mothergoose]

Good luck hope you fine someone soon.

Mothergoose

[justice4j]

Hi Mothergoose,

I hope so to. I have 2 calls out to psychiatrists and I think either of them will be receptive.

There's one that my psychologist referred me to. I only see the psychologist bout every 6 weeks but have been his client for over 10 years. This psych M.D. is Romanian and was a pediatrician, so will likely be familiar with dosing amphetamines. And... if he has any questions about "drug seeking" my psychologist can vouch for me.

That whole last paragraph is just frustrating.:cussing: We are all ill in varying degrees here on this site and others like it for other diseases. There is such a prejudice toward patients with chronic pain.

Although I partly understand this, b/c some people have "blown it" for the rest of us who aren't drug seeking - and I don't think anyone on this board is. But I look at people like Rush Limbaugh who has frequently condemned drug addicts, with no concept of the fact that too is a DISEASE and then is exposed all over the news for multiple Rxs filled at different pharmacies and over use of Oxycontin. That doesn't help any pain patient for sure...

Waiting.....it's so hard.

[ngazerro]

Janet,

I hope it works out. I know how frustrating waiting can be. I got back in town yesterday and have had some kind of bug the last two days. I think I might have ate something bad.:rant: Hopefully they will get with you soon.

Nina

[justice4j]

Nina,

First, I hope you get rid of that bug soon. You're so great to keep track of this thread.:angel: You and everyone else who has:angel:.

I've posted in other forums, but if anyone reads this and can get in touch with Betsy (BBB) the lucky member who is one of Dr. Brookoff's patients, PLEASE tell her to contact me here, PM, or at jans88s@yahoo.com:help:

TIA,

[Mothergoose]

J56 you know I just know you will find someone to RX this for you, you are like me and will not take no for an answer. These Docs you called you should be setting up app with them so they don't think you just want them for the drug, anyways if they rx for you they will want to follow your progress, but setting up app now may hurry the process, you can canel if they tell you know before hand. Also if you get to see them in person you maybe more convinceing.

Good luck Mothergoose

[justice4j]

MG, you are so right. I WILL NOT give up. I called both doctors for an appointment today. :bow:

Nina, bless you for your attentiveness.:bow:

I got another tip from one of my pharmacists for a pain clinic guy that he thought might be more open than most...

Another phone call to him tomorrow. Whoever calls first, I will make an appointment with I guess. Then if one of the others calls and he seems more open....I go to him.

ACCCCK This just should not be so d*** difficult.:loco:

I will need the psychiatrist for schizophrenia by the time I'm done with all this. No slam to anyone who is schizophrenic, BTW. All it is, as far as I'm concerned, is a genetic brain chemistry disorder. But, all this emailing, phone calling, trying to get referrals, printing out articles and posts with names removed......it could throw my brain chemistry..... I have a very close wonderful friend who has schizoaffective disorder and is properly medicated. She is simply one of the most wonderful people I've ever known, and I would never have know she had any brain chemistry problems at all had she not confided in me.

[Wolfe]

Janet, I keep meaning to ask you: Could you (if you want to) get your doc to switch you from Elavil to imipramine (generic for Tofranil)? I've been on both, and the imipramine (which is really cheap!) doesn't make me groggy, or give me any cravings. In fact, I think I'm eating a lot less.

Like Elavil, it's a tricyclic. My psychiatrist gave it to me for depression, and he said they also prescribe it for overactive bladder. Because every antidepressant I have ever tried has set fire to my bladder. He said it should help, not hurt, and also help the Fibro and the depression.

I don't know yet about the Fibro because I've only been on it 5 days, but the very first morning my bladder felt better than it had in months, and it still does. Maybe a switch would help you too.

Also, GIRL: I know you say your pain is PFD, and I understand completely because I did a cup of coffee this morning with Prelief and Utira-C and it was heaven. BUT doing one every morning could be wildfire. Especially since you're really going through a lot of stress right now, realize it or not, and that's hard on your pain levels too. Be kind to yourself right now. Have coffee every other day, LOL.
:smile tee

Let us know when you get your script!

[ngazerro]

Sorry, have not been too attentive. Like I said earlier, I think I ate something bad Sunday on my way back from Memphis, or just caught a bug. I have been sick to my stomach since Sunday night. The plus is I still have not had any bladder pain! I did not take my dextro Sunday, Monday, and Tuesday. I finally took it this morning, but I have no bladder pain without taking it for three days. Hopefully I will be able to keep it down. I had a great visit with my mom and oldest son. I drove 6 hours there and six hours back with no bladder pain. I did get stiff from the fibro a couple times, but I just stopped and walked it off.

[justice4j]

Nina,
I was just reading your post after reading Wolfe's - Judy who is doing well on Imipramine too.

I am supposed to get an email from my gyn according to the receptionist. My gut feeling is that the answer will not be the one I want. I don't mean to be pessimistic, but the fact that no one is calling since Friday and that the receptionist apparently was told that I might call, since we all know I am persistant, but try to be very diplomatic with them.

I did email the gyn the only 2 articles I could find on Dex. and some positive posts.

Now IBS is reacting to the stress of not being able to get care that is available to some of you fortunate patients.

Next.....call PCP and pain management guy recommended by a pharmacist I know pretty well.....

No coffee now with IBS barking at me.

I'm hanging in but it is very difficult.

[justice4j]

:bonk:

Nina,
I just called the 2 psychiatrist again. Number1 - left 2nd message
Number2 is not taking any new patients, I was in tears and talked to the person answering the phone about my pain problems and told her to please view my video on YouTube "Real People Denied Real Health Care." That's the one the California Nurses' Association sent a videographer down from Oakland to tape in my home.

I also called my PCP and talked with his very nice office person who "knows" me. I am hoping she will call me back with an appointment time for Tues. July 8th. I will at least get a referral for Pain Management.

My pharmacist recommended a PM specialist that is 15 minutes from my home. They won't see you w/o a referral and the wait to see this particular Dr. is TWO MONTHS!

If non of this works.......clinics in Mexico.:cussing::help:

[ngazerro]

Janet,

I am sorry you are having such a hard time. I wish I ahd some suggestion for you. Hopefully you will get a call back soon. :smile tee

[Mothergoose]

Sorry still have not had any success, i am going to watch your utube cast this after noon.

Mothergoose

[Charisse]

I am hoping that the more of us who ask our drs about this medication that the more well known it will become. I am wondering if someone here on the IC network has connections with some of the drs that have been interviewed and perhaps one of them would be willing to do a small study? It is just a thought . . .it seems like until then this medication will continue to have a stigma. I'm not sure it's any worse than those ICers that have to use narcotic pain medication all the time so it makes me sad that drs are so reluctant to prescribe it. I am also of the belief that there is some underlying condition that causes the IC and has to do with the autoimmune system, allergies, IBS, Fibro, anxiety . .etc. There are too many of us with all these issues. I suffer from all of them including Gastroparesis which dextro is also known to help. Hopefully by the time I have my baby in October there will have been more research. I am currently in a major flare from vacuuming my house on Sunday and then later walking 25 mins on my treadmill. I am sick and tired of not being able to exercise or do simple tasks. Everyone please keep us updated on whether or not you've tried this medication and if it's helped you. I'd like to find a commonality in those of us it helps and those of us it doesn't. I know there is at least one patient here who felt it made her IC worse. I can eat pretty much whatever I want on Elmiron now but activity is still my number one enemy. Elmiron seems to do nothing for that.

[justice4j]

Charisee, MG, Nina,

I am so grateful for your support. I understand Dr.'s concern about chemical dependency. But, I can furnish pharmacy records from the 2 pharmacies I use for the PAST 10 years, -plus the last 18 months of the 24 hr. pharmacy I occasionally use.

Darn it! I'm just in tears. Of all people....to get turned down....someone with a medical background who isn't seeking drugs, JUST SEEKING TO GE HER LIFE BACK TO SOME KIND OF A DEGREE OF NORMALCY! Just like Charisse said. My house and poor poodles have never ever looked worse. I live many hours of my life sandwiched between heating pads, even though it's already hot here.

IBS is flaring really bad. I won't be able to eat anything before I teach the few pianos students I have this afternoon.

I'm still in contact with the wonderful NP Dana Bell RN who works with Dr. Pecht in the Atlanta area. Even if I flew back there, I could only get a month's RX because this drug is Schedule 2 and the DEA is immediately notified when ANY RX of this is filled!

Got this straight from the pharmacist last night.

You know....I'm okay if I can still find ways to be proactive, but I'm running out of options and that is when I find it the most difficult to cope.

Thanks all of you. It does help to have your support.

[ngazerro]

Charisse,

Hope everything is going well with the baby. :) Exercise is what caused me pain the most also. Hopefully by the time you do have the baby there will be more ICers that dextro has helped. I know my Dr's office is doing a study with me and some others on it. My doctors tried to talk to Janet's but I don't think it did any good. I would love to see more studies on the dextro. For me it has been life saving, but I can't speak about others. We are all so different when it comes to meds.

Nina

[ngazerro]

Hi Janet,

Just watch your u tube. It was really good. Love your poodle!!! I have Ozzy below. He is part poodle. A goldendoodle. I know what you mean about up keep. We just shaved ozzy so it was easier. LOL

Nina

[snowgirl]

Charisee, MG, Nina,

I am so grateful for your support. I understand Dr.'s concern about chemical dependency. But, I can furnish pharmacy records from the 2 pharmacies I use for the PAST 10 years, -plus the last 18 months of the 24 hr. pharmacy I occasionally use.

Darn it! I'm just in tears. Of all people....to get turned down....someone with a medical background who isn't seeking drugs, JUST SEEKING TO GE HER LIFE BACK TO SOME KIND OF A DEGREE OF NORMALCY! Just like Charisse said. My house and poor poodles have never ever looked worse. I live many hours of my life sandwiched between heating pads, even though it's already hot here.

IBS is flaring really bad. I won't be able to eat anything before I teach the few pianos students I have this afternoon.

I'm still in contact with the wonderful NP Dana Bell RN who works with Dr. Pecht in the Atlanta area. Even if I flew back there, I could only get a month's RX because this drug is Schedule 2 and the DEA is immediately notified when ANY RX of this is filled!

Got this straight from the pharmacist last night.

You know....I'm okay if I can still find ways to be proactive, but I'm running out of options and that is when I find it the most difficult to cope.

Thanks all of you. It does help to have your support.
Janet I hope you find someone to write you the script for the dexedrine. I tried a low dose ritalin and could not tolerate. Not IC wise. I was feeling doped up and it affected my judgement. Pharmacist told me if you can't take ritalin then you most definately can't take dexedrine. good luck. Vicky

[Wolfe]

Charisse is right: someday we're all going to be revered as pioneers. It's easier now for new ICers because of Elmiron, and when I started on it, it wasn't yet FDA approved. I heard about it in a support group and my uro got me in on the pharmaceutical company's study to get FDA approval. Now Janet and Nina are changing things for the future.

Janet, I know where you are and I feel for you. It's so frustrating to need help and have someone else in control. When you're miserable, ANY help comes too slowly. And if you're persistent, then you're "looking for drugs." The PCP that gave me my original diagnoses wrote that in a letter referring me to a chronic fatigue specialist because I wanted something stronger than Tylenol for my pain, and he had never even given me a script for anything! He told me I read too much (because I asked questions) and I needed to find a good church. What I found was a new practitioner. And I still hesitate to ask for a script for anything, because if that gets in my records again, I'll have to fight that label for a long time.

By the way, while I'm venting, that was the same PCP who treated my mother for bronchitis for a YEAR before finding the breast cancer that had already gone to her lungs. I guess someone had to graduate at the bottom of the class, right?

I still feel really positive for you Janet. Holiday weekends are the most difficult to wait through. You've got to take a deep breath and focus on something else so your IBS can settle down. (Been there too!) It will happen for you, and maybe right now being proactive is being calm. We're all in your corner.

BIG July HUGS!!! :pray:

[Mothergoose]

I think that some not all Dr. don't know how to handle people being proactive in their health. You are not drug seeking cause you asked to be given something to function. It is not note worthy enough to be put in a person's file. Getting information enpowers us in our own medical care. Dr. should be happy that we know what we are dealing with.

Mothergoose

[ngazerro]

Mothergoose,

Your right. I am one of the lucky ones that have a doctor that will work with me. I can't imagine how frustrating it is not having anyone that will listen to what you think will work for your body. :cussing: Nobody understands your body like yourself. Before taking the dextro I was spending about $150.00 a month for meds. That was with insurance. We have retired military insurance, so it is very good. Now I spend about $15.00 a month, with much improvement. I have been able to work and lead somewhat of a normal life. It is a shame to deny anyone of that.

Janet: :grouphug: for you!

[justice4j]

Hi Everyone,

I received an email from my gyn stating that she was in so many words uncomfortable being the only practitioner in the area who would be Rxing Dextroamphetamine for PFD.:mad:

But, Dana Bell RN NP had the gyn she works with, Dr. Pecht, email my gyn about her experience with Dex for IC/PFD patients.:bow::woohoo: Dana and Dr. Pecht were so very thoughtful to take that time in their, no doubt, very busy shortened week to do that.

I wrote a very nice reply to my gyn stating that I wasn't taking her hesitancy to Rx Dextroamphetamine personally because I knew that she and I had a 10 year rapport and did not think I was drug seeking. I absolutely believe her discomfort is being the first MD in our conservative Orange County CA community Rxing Dextroamhphetamine for PFD/IC. That places her with some liability if something odd should happen to me, her patient.

I'm not giving up. One of my adult students whom I know well suggested I take a weekend cruise to Ensenada, and my friend suggested the same thing. There is a community of American doctors there...

But, if this doesn't work out locally, I will either fly to GA- I just emailed about that, or have to wait until Dec. when I am already scheduled to see my family in KY and see Nina's doctor.

Nina, your doctor is actually doing a small FDA study with Dextroamphetamine and that is one of the reasons he is able to easily Rx this med. It keeps him out of "legal hot water."

ALL OF YOU, I CANNOT FULLY EXPRESS WHAT YOUR SUPPORT MEANS TO ME! WE ALL ARE PROACTIVE PIONEER PATIENTS WHO JUST NEED A DR. WITH ENOUGH CONFIDENCE TO ADD HIS OR HER WAGON AND "GO WEST."

You know, as difficult as it would be, I would go to my gyn's office everyday and have her give me the med there and check vital signs whatever....

Next, I'm going to contact my local IC support group and see if ANYONE is taking Dextroamphetamine. I will go to their next meeting studies in hand and see if I can generate the interest we've had here on the boards. The thought that I can try one more thing, makes me feel a little better. If no one in Orange County is doing this, then I'm really not hopeful that I'll be able to get rid of the headaches and bloody noses I have every single morning with Elavil or the Norm Crosby like speaking patterns I sometimes have during the day b/c of topical Valium.

BTW, Dr. Brookoff uses 10-20mg X3 per day, and I'm only using 10mg. at night. The half life of Valium is SOOOO long that I feel foggy all day long. I'm okay to drive, I just can't think of words quickly and things like that. Not to break my arm patting myself on the back, but people who know me well describe my humor as "dry and quick witted." Valium takes that away from me.:mad:

Thank you to all of you for your unflailing support. Without that, I would be really depressed. :angel:'m trying very hard to stay as calm as possible. I have to be able to eat and get this IBS under control and soon.

My last Ferritin level was 5 and the very lowest normal is 10. My upper eyelashes have almost all fallen out and my endo said that is why. I've only been able to eat smoothies for the past 2 days. I took plenty of Prelief and didn't get much more than a little frequency.

Wish me luck.... I love all of you for taking time to follow this and support all of us who need to at least get to try this.

Hope all of you have a happy 4th.

[snowgirl]

Jan

I sent you email via your private mail. Vicky

[justice4j]

Vicky,
I got your email and will write back this weekend. REally tired right now. Hope you're doing better.

[justice4j]

Hi Everyone Following This Thread,

The title was meant as a metaphoric attempt at humor.

I heard from my gyn and she doesn't at all think I'm a drug seeking individual.
She has actually put in a lot of time into trying to get herself comfortable with the idea of Rxing this for me.

She called the local paiin management guy. NO dice...He doesn't do it to treat PFD or IC.

Now, my gyn is really afraid to Rx it b/c it runs into a "community standard of care liability." Meaning, no one else around here is Rxing it for PFD and if she did and something weird happened to me, there could be a problem for her legally.

As I said in another post, my 24 hour pharmacist said the DEA as in Drug Enforcement Agency is notified of EACH RX for Dextroamphetamine and I assume any other amphetamine or any drug under Schedule 2.

I will be seeing my psychologist Tues. and maybe he might have more ideas. I'm going to call him maybe Sat. and leave a message that the psychiatrist he referred me to has not returned my calls X3, even though I made it clear I wanted to be seen as a private patient - he practices at University of California Irvine Medical Center where a lot of Medical patients are seen.

Another friend is going to call a psychiatrist he knows to see if he will see me. I already have all my pharmacy and medical records, so I will make several copies of each. The psychiatrist I had the most hope for getting help with this RX no longer takes new patients. I just dissolved into tears with that one. The receptionist was very sympathetic and took my contact info.

Dana Bell, RN NP in GA has emailed my gyn. She also emailed me to tell me this and wished me luck and prayers. I cannot believe the amount of empathy she has for a patient she's never seen. The same with Nina's NP Melinda Staten RN NP.

These women and the support of everyone here has kept me from completely losing it.

I am also going to contact a friend and see if she has enough FF miles for GA. If not, maybe my cousin who is donating miles for Christmas flight to KY can. If not, I SAVE every penny somehow and drum up the funds for a flight and hotel to GA.

Does anyone know how far Lawrenceville is from Atlanta Hartfield Airport?

I'm so tired from all of this I actually am starting to feel like I have ADD. Today I was talking to someone about plastic surgery for breast cancer survivors and couldn't think of the word "reconstruction".....it came out "requirement" instead. I do that several times during the day....Valium and Elavilized.... I hate both drugs.

I WILL NOT GIVE UP UNTIL I AT LEAST GET TO TRY THIS!:cussing::mad::loco:

[Mothergoose]

Sorry to hear that that Dr. turned you down, I don't quite follow the reasoning but rules are different in the states. Before you go to another state to get it RX think long term how are you going to continue to get them RX, they ussally only write scripts for a month at a time. I don't want to put a damper on your idea but I don't want you to go to that expense and then have it not work for you.

I will keep my fingers crossed that the Dr. next week will RX it and that will be the end of the worry.

Sorry you are haveing such a hard time getting this.

It does not surprise me that the pain mamagement clinic wouldn't, this is too new for them unless they had a number of IC patients, and they were using it. I don't think in any other case that it is used for pain management.

I know it will be a long weekend for you, just keep your fingers crossed. I am not sure how I am going to entertain and have a party hear on Saturday with mine crossed.

Good luck Mothergoose

[Charisse]

Nina so are you saying that most of your pain was activity induced and dextro helped that? That is the number one reason I would want to try it. I am going to work on increasing my Elmiron first because that has definitely helped me with food sensitivies but I just wonder why it's not doing much for the activity. I guess there must be some kind of swelling issue going on and maybe the dextro would help clear that. I am afraid I would not tolerate feeling jittery from it though. .that is the only thing that worries me because I already have anxiety and am affected easily by caffeine even. I didn't realize it was such a big deal to prescribe. .I am kind of in disbelief at all the people having trouble getting it. For those of you who are on it . .who prescribed it for you and have they prescribed it for other IC patients??

[ngazerro]

Charisse,

Yes, My mine problem was activity and just sitting too long. I could eat almost anything. Sodas, Coffee, and a few others things bothered me. Caffeine make me jittery also. I guess I am not use to it. I do drink a coffee every now and then. I can't stand the way caffeine makes me feel. The dextro does not make me have that feeling. I am on a very low dose though. I can't explain why it helps so much, but it does. I think the main reason is that it does not cause retention.

[Charisse]

Thanks Nina. Retention is what I'm guessing causes all my pain and swelling too. I can't wear jeans at all anymore because even the slightest pressure does me in. And sitting too long also hurts me. What dosage do you take? It's good to know it doesn't make you jittery.

[ngazerro]

Charisse,

I take 5mg in morning and sometimes another at 12:00. Sometimes I even skip a day.

[snowgirl]

I was so hoping the ritalin would have worked for me. Then I know I could have taken the dexedrine. I could not take the ritalin even at a pediatric dose. I was so hoping this could be it for me lose the long acting pain meds and have energy .......... turnaround and make it off disability and back to work. No go. VIcky

[Wolfe]

First, Vicky, my understanding from the former thread on this topic is that ritalin is very different, so maybe you COULD take the dextro.

Charisse, my main problem is inflammation in the bladder, and it sounds like maybe you have that too. Gosh, there were two whole years when I couldn't wear jeans because the zipper hurt! The Elmiron doesn't seem to help with that at all, just with food tolerance, urgency, etc. When my bladder gets inflammed, I'm done for.

Finally, Janet: It just occurred to me how close you must be to UCLA. Support groups are a VERY good idea! They might be able to put you in touch with studies or the med school at UCLA or other University of CA schools. That has to be a much closer trip for you. Everyone here in Virginia keeps telling me to go to Duke, in NC, or to University of Virginia's medical center; so many people in Virginia travel there for medical problems. Get on their Web site and see what you can find at UCLA! It will give you something to keep your mind busy over the weekend. BIG HUGS!

[snowgirl]

Judy

That Janet is a go getter- she could lead the support groups. She is real active in the California Nurses Association and Health Care Reform. A real activitst Janet is a positive one too. Vicky

[justice4j]

Vicky,

Thank you for such nice compliments!

I only do what any IC sister or brother would do for other IC patients. I somehow acquired the gift of gab and am, I have to confess kind of a ham.

Not too hard to believe since I sometimes perform as a pianist. The public speaking thing came easily to me, and that was a surprise to learn about myself.

My mom and dad had a challenge raising me b/c I never give up when I feel something is unjust, needs to be changed, or is something I need.

I actually thought seriously about becoming a lawyer before IC. It was years before I was diagnosed and I went through the preliminary stages of application to a law school, and abandoned that b/c I knew I just didn't have enough energy to be an ER RN and go to law school. I think I would have liked being an attorney.

[Wolfe]

Mothergoose, I hope you get a script and I hope it works for you. Please let us know about your progress, even if you have to start a new thread. I will watch for your good news!

[snowgirl]

doesn't this dexedrine amphetamine make any of you jittery, nervous. It can increase anxiety. It is a stimulant I took one tiny dose of ritalin and was like I had taken an amphetamine could not handle it. ? Vicky

[ngazerro]

Vickyvale,

It does not make me jittery or nervous. It helps alot with my fibro fog. I sure if you take an high dose it will cause anxiety. The low dose I take has actually help with my anxiety. I am sure it effects people different. I would not want to take an higher dose. My body has gotten used to my dose. It has been close to 7 months for me. Caffeine makes me jittery.

Nina

[Charisse]

Well I have been wearning maternity pants for the past year (even before I got pregnant) because I just could not handle the pain. I think I found 1 or 2 pairs of regular pants that wouldn't hurt but they were a full size larger than normal and would be falling off me when I stood up however I couldn't handle the pressure of my regular size when I sat down. If track suits ever go out of style I am screwed! I finally just gave up and got the maternity pants with the demi-panels. I know some of you would rather die than wear maternity pants but some of them you can hardly tell and they look better than sweats a lot of the time (Gap has some really nice pants). I follow up with my OB on Wed about the flares I've been having. He's not an IC expert so I don't expect him to tell me much. But his assistant insisted I see him again because in her words "how can I live this way?" which of course I agree but I think his only option will be Vicodin at this point. I'm not sure I want to take Vicodin while pregnant plus that won't help me with the inflammation. I won't bother mentioning the dextro until after this baby is born. I have a feeling he will want to send me to a urologist now that my Uro-GYN is retired . . and I don't have much faith in any urologist in my town. He said his number one treatment is Elavil which I know I can't take.

[justice4j]

Charisse,
Have you tried Stanford?

How far is that from you?

[justice4j]

Charisse,
Maybe you can book the appointment for after the baby is born NOW and you'll be sure to get one when you need it.

Good luck! I can't imagine being pregnant, and having the baby grow and put more pressure on your bladder. I'm sorry you're uncomfortable.

About Dextroamphetamine.....I'm sure you've read the road blocks I've run into.....It will not be easy....

Take good care of yourself!

[Charisse]

Janet no I haven't tried Stanford. It's probably 2 or 3 hours south of me. I'm an hour north of SF. Is there someone at Stanford that is recommended? I haven't kept up with all the threads this year since getting pregnant. I am trying to keep myself more in the loop now!

[justice4j]

I've heard of a Dr. Rodney Anderson who co-wrote the "A Headache in The Pelvis" book with psychologist and CPP sufferer of 22 years, David Wise.

I'd start gathering all copies of print outs of your meds from the pharmacies you use. They just print them out in minutes from the computer.

Gather all your medical records you can get your hands on beforehand.

That way, you will have some evidence to show you are not seeking drugs, just a treatment that has worked in days so well for many people here. With permission, maybe you can print out the posts.

Also, the Hubbard Clinic in Louisville KY is presently conducting FDA studies using Dextroamphetamine. There are 10 patients involved so far.

Look for posts from the following:
NGazerro
BBB (doesn't post often but is the well known pain management Dr. Brookoff's patient)
SamandMichelle

Also, when you search the site here just type in "Dextroamphetamine" and leave the word sulfate out. You will get more hits.

If you know an area psychiatrist that treats ADD, print out the 2 Dr. Jerome Check articles on Dextroamphetamine treatment for gastroparesis and IC. Those are the only 2 articles I've found so far and believe me I've spent hours looking and asking around here.

Doesn't hurt to be well prepared in advance for after your baby is born and if you breast feed after that...

I hope you feel better.

[justice4j]

Judy,

I wanted you to know that I took your suggestion and emailed every support group in SoCal except for the San Diego one. I already had a rather concerned reaction from Dr. Parsons' secretary about my request and she said they never prescribed that and maybe I needed pain management.

I also emailed the support groups in the Tucson and Phoenix area. Maybe I should email someone in the Denver support group since that is where the wonderful Dr. Brookoff is based. I understand he Rxd this for Betsy BBB whom I can't seem to get in contact with. I truly understand. She's doing well and I think is probably too busy to even check the boards here.

Don't get me wrong...Dr. P and his staff have over all been wonderful. Dr. P just feels strongly that he can help most patients with Elmiron, Atarax or Vistaril, and instills.

Well....I'm here to say...this flare really is not breaking after 15 months of IC-->IBS-->PFD being circuitous (sp). The IBS was calming down and I ate a few bites of cooked carrots and my belly looks like the Hidenberg. Back to Imodium.

If the UCI psychiatrist doesn't return my call by Tues., I'm going to go there in person and find out what it takes to get an appointment with him as a private patient. Sheeez You'd think they would want patients.....

This is becoming simply unbelievable. I've had 3 people PM today alone for advice where to go for help finding doctors to Rx this promising med. If you read NGazerro's posts, she's doing incredibly well AFTER 6 MONTHS OF A VERY LOW DOSE, and I would want a dose like that. I'm very sensitive to meds. and want to be very cautious. That really doesn't sound like drug seeking behavior to me...:rolleyes:

Mothergoose, did you get an Rx?

[Wolfe]

Janet, I think you're on the right track. If all the ICers in CA start asking for dextro, maybe it will become a standard option.

Charisse, Elavil might have been "standard treatment" 20 years ago, but it's a tough drug to get used to and many people on these boards are looking for alternatives. Your doc needs to join the new millennium!

If the imipramine turns out not to be my magic ticket, I'm going to ask my psych about the dextro. (I already gave him info on it.) If he says no, I'm going to ask "Why?" And if the answer is because it's a scheduled med, I'm going to say, "That's not a reason for me to suffer when help is available. Will you help me find someone who would be willing to prescribe a trial for me?" How can he say no to that??

You know, I asked my uro if she had ever been on this site and she said NO. How does that work? How do you consider yourself good at your field if you don't keep up with patients and/or treatments? Mild curiousity alone should have caused her to check it out!

[camackin]

I just discovered all these dextro threads late last night and I'm really excited. My symptoms sounds similar to ngazerro, severe pain without too much frequency and lots of fatigue. I am not diagnosed with fibromyalgia or IBS but have some strong fibro and IBS like symptoms - this could work for me! I'm going to print out the studies and see my family doctor tomorrow. I don't see a reason why she wouldn't let me at least try it. It won't contradict any of my other meds and she had been pretty good to prescribe me oxycodone for pain. Oxy is prob just as potentially addictive as dextro amphetamine I would think. Also it seems like I would know within the first couple of weeks whether it works for me or not so why wouldn't she say yes?

If she says no I will go to my uro, if he says no I will get a referral to a psychiatrist, if they say no I will try to find another gp or uro that will let me try it.

I have to at least try it. I want a chance at getting my life back!

[lmq78]

I am really wanting to give this a try as my symptoms sound very similar. I just called my Uro and "no" was out of his mouth before I could finish my sentence. He really wants me to go back on the Elmiron. I quit Elmiron last week and have been taking the Cystoprotek.

[Charisse]

I have Fibro and Gastroparesis which it is also supposed to help. My main symptom is also pain (not frequency). I haven't tried asking anyone but my Uro-GYN about it and he has since retired. He said no. He never offered me narcotic pain meds either though so I didn't think much of it or realize this medication was such a big deal until people started posting about their troubles in getting it.

[snowgirl]

oh nice if your md would not give you pain narcotics then no you would not give you dexedrine. Some mds are reluctant to prescribe it as it is a class two controlled amphetamine. A stimulant. They don' tknow the research and dont' feel comfortable prescribing it as it would and is regulated by DEA and who prescribes its. It is going to be your pscy md's, sleep apnea md's those type of md's who are more comfortable prescribing it. Only a uro who is really studied and up on new IC current events. Vicky

[lmq78]

My Uro has only prescribed Elmiron and I have been dealing with the side effects for over a month. I asked for something to help with the pain until the Elmiron kicked in and was given Elavil. I could not take Elavil as it made me vomit. I even tried again last night and was sick all night. I am kind of loss on where to go now. I live in the Atlanta area and would think that I could find a doctor that would be willing to help. This is such a large city. I am going to make an appointment tomorrow and ask for a referral. If anyone has any advice on a good Uro, please feel free to send me a message. Thanks!

[camackin]

Hey Mothergoose that's great! Definitely keep us posted on how you do. =)

[justice4j]

Hi Everyone,

I received a call from a highly recommended psychiatrist at University of California Irvine Medical Center.

HE HAS ABSOLUTELY NO PROBLEM WITH RXING DEXM, IS KNOWLEDGEABLE ABOUT BRAIN CHEMISTRY RELATIONSHIPS, UP REGULATION OF MICROGLIALS AND TREATS MANY PAIN PATIENTS WITH AMPHETAMINES.:woohoo::woohoo::woohoo:

Plus, he has a background as a pediatrician prior to becoming a psychiatrist.
He was so calm and understanding that I can't wait to meet him face to face.
He has a charming European accent and such a pleasant manner :angel:on the phone. If he says it is okay, I will give his contact information to anyone in the area who would like to be seen by him.

I think that perhaps psychiatrists in general are more open to this type of treatment.

I will have to wait for a few weeks for an appointment due to his vacation, but I will have the RX within about a month.

I think I found someone that is a good fit with me. He chuckled when I mentioned the microglial upregulation and said, YES YES! You understand.

What a reliefe this is I can't tell you. I also think I want to start with th 5 mg. in the AM and 5 mg. at 12 N.

W/O the support of all of you here, the wonderful PMs and updates, I think even my IRON WILL would have been severly tested.

Thanks and my love, best wishes for peace, and symptom free journey into a life w/o pain,

Tonight, I will sleep well w/o this worry of wondering if I could ever find a way to the right Dr. :dance:

[samandmichelle]

Congrats! We're both really happy for you!

[Charisse]

Yeah Mothergoose and Janet .. I pray you both get relief and that this med helps. I'm pretty far from Irvine but I'll keep it in mind. I would like to try a new Uro first and perhaps a psych dr . . I met a great one in February but of course not going to worry about any of this until I've had my baby. One step at a time but it's nice to know there is "hope" out there. I spent an hour crying to my therapist yesterday about how pathetic I feel for not being able to vacuum my house without flaring. And my fear of not being able to lose this baby weight if I can't exercise. . I just want reassurance that there is something that can help me to do these things again and it's nice to have hope. Keep us posted ladies.

[camackin]

Just came back from my family doctor and she prescribed the dextroamphetamine-sulfate for me! I brought in a journal article and another abstract from Dr. J H Check describing his results and convinced her to let me try it for 2 weeks. She started me on 10 mg/day taken in the am.

I'm really really really really hoping it gives me the relief that those in the case study got. I'm so happy my doctor was open minded!

[lmq78]

I hope you have great results! Please keep us updated!

[camackin]

I definitely will!!!

[ngazerro]

That is great! Hope you have great results! Please keep us updated...

[Mothergoose]

Great news camackin I am so glad you got it, the more that get it and have good results, the better for everyone.

:woohoo::woohoo:Mothergoose

[camackin]

hey ngazerro, i read your post that said when you first took dex you went off your other meds for one week before, is that right? I was thinking of doing the same thing because I don't want anything to interfere with the dex if it's going to work.

Elavil or Tofranil could decrease the effects of dex as it states in this link
http://www.4therapy.com/consumer/medications/item.php?uniqueid=99&categoryid=69&

but the pharmacist that works at my mother's hospital who specializes in psychiatric drugs was saying that I'm taking such a low dose of Elavil (10mg daily) that it's not enough to effect the dex. Still I'm thinking of keeping on my Elmiron and antihistamine (and oxycodone as need), but dropping the Elavil just for the week and see what happens...

I don't know if that's a good idea or not cause the Elavil keeps my fibro-like symptoms at bay. I'm just desperate for the dextro to work. :hmm:

Maybe I'll try it for the first few days and see how it goes.

[justice4j]

You know, what I'm going to do is stay on Elavil and antihistamines too unless I'm told not to do antihistamines. If you read all of NGazerro's posts, she waited awhile before going off Elmiron.

I can't see how Elmiron would interfere with Dextroamphetamine sulfate, but I'm not a pharmacist and you have a great resource in that you have access to a psych pharmacist. How wonderful!

Actually, sometimes pharmacists know more about medications than some doctors. There are so many new meds to keep up with and the Big Pharma companies sending reps who with some Dr.s (not all and not the good ones) are their main source of "education" about new meds.

The info about Elavil sounds logical at such a low dose of 10 mg. Again, not giving medical advice, but you have great resources.

Good luck and keep us posted! You know we all have each other's back!

[Wolfe]

I'm sure they're about to close this thread, and I'm voting again for A DEX BOARD because I sure would love to walk into my doctor's office with a few of those studies in my hand. I already took the abstract from UroToday, but I'd like to know where I can find all the big-gun studies online. :pray:

Seems to me that former posters mentioned the dex helping Fibro too, and that's why I'm so anxious to ask my doc about it. An IC flare causes a Fibro flare and vice versa. So I really have to treat both and not just one.

It is so encouraging reading all the positive news here! Please keep us up to date!

[ngazerro]

camackin,

I stopped the cymbalta, ultram, topamax a week before I started the dextro. Mainly because I was so sick coming off the cymbalta. That was a killer. I stopped the Elmiron, I think about two weeks later. I don't think it would there is any problems taking them together. The Elmiron never did much for me, so why take it. I stopped taking the Atarax ( antihistamine) and my zanaflex after about three months on the dextro. My goal was to take the least meds as I could. I take the zanaflex & antihistamine only sometimes when I feel I need them.

I was doing bladder rescue installs weekly and then went to monthly. Now I have not had one in about three months. At first we did put the Elmiron in my installs but it started to hurt my bladder so we stopped. DMSO hurts my bladder. I did 6 weeks of those and that was enough.

The last two days my bladder has been feeling off. I am going in today to see if I have a bladder infection. I think I do because I have also been feeling lousy. It still does not compare to the bladder pain I had before I started the dextro.

The only thing my doctor wanted me off before I started the dextro was cymbalta. I wanted off the rest. I use to take 16 pills a day. Now I am at 3 pills a day, and work, exercise, have sex. That is alot of improvement for me.

[camackin]

how desperately do i want to be able to work, exercise and have sex?:wink:

really desperately!

i got the medication yesterday and my doc said to take 10mg in the am. but i got so impatient that i took 5mg at 3:30 when i got the prescription and couldn't sleep till 5 am. oh well, if it works than that won't matter and i'll just take it in the am from now on.

[ngazerro]

camackin,

Yeh, I would not take it in the late afternoon. When your body gets use to it you may be able to. I have but it did bother me because I am use to it. Make sure you get your sleep. Keep us updated!!

[camackin]

yikes i hope you don't have a UTI! sending good, helpful, non-UTI thoughts your way =)

[camackin]

I thought just in case anyone wanted to take info to their doctor that I would repost these 2 abstracts. I showed both to my doctor and highlighted the important parts.
**********************************************************
Abstract #1 from The Clinical and Experimental Obstetrics & Gynecology Journal Issue 32. here is a link to the abstract online. http://www.unboundmedicine.com/medline/ebm/record/16440825/abstract/A_novel_highly_effective_treatment_of_interstitial_cystitis_causing_ch ronic_pelvic_pain_of_bladder_origin:_case_reports_

Check JH, Katsoff B, Citerone T, Bonnes E. A novel highly effective treatment of interstitial cystitis causing chronic pelvic pain of bladder origin: case reports. Clin Exp Obstet Gynecol. 2005;32(4):247-9.

PURPOSE: To determine if a very effective therapy for idiopathic orthostatic cyclic edema--dextroamphetamine sulfate--would alleviate symptoms of chonic pelvic pain of bladder origin/interstitial cystitis. METHODS: Two women with interstitial cystitis that had been refractory to various therapies were treated with dextroamphetamine sulfate (20 mg/day) without any other treatment. The diagnosis of idiopathic edema was made by abnormal water load test and interstitial cystitis diagnosed by elevated scores on the pelvic pain and urgency and frequency symptom scale. RESULTS: Both patients quickly improved their bladder symptoms and all pain and urgency was gone within a week. The interstitial cystitis remained in remission as long as the women stayed on their medication. One woman proved Koch's postulates by stopping the medication because of forgetting it and symptoms resumed quickly only to disappear again upon resuming therapy. CONCLUSIONS: Dextroamphetamine sulfate can be a very effective therapy for recalcitrant cases of interstitial cystitis. Prospective placebo controlled studies are needed to determine what percentage of patients with this debilitating condition have concomitant idiopathic edema as determined by abnormal water load test and how well a larger series will respond to this novel therapy.

*********************************************************
Abstract #2 from The Medical Hypothesis Journal Issue 70
http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6WN2-4PJDD8C-1&_user=10&_coverDate=12%2F31%2F2008&_alid=764765298&_rdoc=1&_fmt=high&_orig=search&_cdi=6950&_sort=d&_docanchor=&view=c&_ct=1&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=b840b79ac7570309040af8b97d48e0d4

*********************************************************
My doctor really only read through the first abstract quickly so hopefully this helps others.

[justice4j]

CA,

Started a new one before this one gets closed again. Would you like to see a DEX forum? I would and SamandMichelle, Wolfe, and Mothergoose and lmq78 would too.

Thanks

[camackin]

yes a forum on this is needed!

[camackin]

I do have the full version of the article from the second abstract above if anyone wants to private message me for it i can send it to you. i'm not sure about copyright laws so don't want to post the full article on the forum.

[Mothergoose]

Thanks for posting that info is hard to find. I am printing all the articales I can find on Ic and Ic related things, and creating a folder of infomation. Just in case i need it some day.

Mothergoose