Unusual Side effect

[justice4j]

As I posted before, I started Dextroamphetamine sulfate yesterday with a 1.25 mg. dose, b/c I couldn't get the Rx filled until 1:30 PM. I was afraid if I even took 2.5 mg. that I might still be wired in the afternoon while teaching piano and then might not be able to sleep.

The pain, urgency, frequency effects of Dex are wonderfully positive.

I am having a strange side effect - it is really making me overly mellow almost sleepy.

The pharmacist had never heard of this. I have a call into my doc about it, but no return call.

Anyone else ever had this happen? It's certainly NOT enough to get me thinking of stopping it.....

I can't find anything through research that has this reported either.

Maybe I am more/overly relaxed due to the almost sudden halting of symptoms?????Any thoughts?

[ngazerro]

Janet,

You might be right about your body is finally able to relax without the symptoms. It just might take some time for your body to get use to. I would ask your doctor when he calls you back.

I am glad it is taking away your pain. :woohoo::woohoo:

You also stated that you stopped taking the other medicine. It might be a reaction to stopping it. I went through bad withdrawl symptoms when I quite cymabalta. Just a thought!!

[justice4j]

Nina,

Thanks so much for responding - you always have my back. Maybe going off Elavil is the answer, but I was only on 10 mg. for 26 days.

I wish the doc would call back or even send a message. I'm even thinking of taking it at night.

I have to play piano tomorrow night at a gig and I don't dare take the Dex until the gig is over. I am too foggy to drive and it's about 45 minutes away....

You know me, I will persist until I get this worked out. Maybe all I need is a crumb of the stuff I'm so sensitive to meds.

I stood in a dentist's office after 4 wisdom teeth were extracted and started running in place and wouldn't stop. Knew I was being crazy and could not stop myself. Later, through other experiences I learned that it was a reaction to Nitrous Oxide, which isn't used as much now.

The Dex will work. I'll just have some tweaking to do. I always end up doing that with most meds. I consult with my docs, but I also really pay attention to what my body is doing. All my docs so far pretty much trust me to tweak things once they're Rxd.

Just had so much trouble getting this stufff....it's cheap...takes away pain and now this weird side effect. I'll work through it.

I had also printed out a doc with all my meds and dxs for the doc who Rxd the Dex, so I would think he would know of any adverse interactions.....?

[Wolfe]

Janet,

First of all, I didn't see your post that you got the dex, so this is ME doing the Happy Dance!! :dance:

I think that even though you were only on the Elavil for 10 days, as sensitive as you are to meds, you're probably going to be sensitive to the absence of them as well. I don't know how many you stopped, but just those two changes would be enough to throw me into a tizzy! I'm looking forward to stopping the Abilify and the Ambien now that I'm on the imipramine (and still doing very well!), but I know it's going to be rough, and of course I plan to only stop one at a time. I'm impatient though.

I know you're smart enough to figure this out and get it right. I want to thank you for being the pioneer (uh, guinea pig) for the rest of us, and PLEASE keep us posted about everything that goes on with you. We want to share in your success.

Here's to "back to normal"!!! :woohoo: I'm so happy about your improvement in symptoms! Yea!

[camackin]

For the first 5-6 days the dex made me really tired when i first took it. Then it seemed 2 - 3 hours later i would get a burst of energy. it was weird. now i find i am starting to have more energy all round and don't get as sleepy. maybe it's the body adjusting to the new medication? I also stopped my elavil/amitriptyline at the same time so maybe that has something to do with it all.

[camackin]

i forgot to say, the first few days i also felt my heart rate go up like i'd been sitting in a hot tub for way to long, but i was sleepy at the same time. wonder what that is

[justice4j]

Hi,

I'm feeling less sleepy! Still a little sleepy, but not like the past two days.

I think my psyhi tried to call me back, but the message was garbled - saw the office number on the CID though.

The only drug I stopped was Elavil and I had been on it for about 24-26 days. I asked the doc if I could go off it immediately b/c I hated the side effects and he said ok.

Well.....this guinea pig made one :loco: mistake. So...I'm reading about what effects the absorption of Dex and I find out that if the stomach is more acidic, it lessens the absorptions.... I get my smoothie which is usually peach and have them sub OJ for peach juice.


DUH WRONG! I did 4 Prelief and then 2 more a little later and am burning!!!!

I was so "washed out" from the Dex yesterday that I was a little too desperate to counteract it.

I like OJ, but it isn't any big deal to give up. I prefer the Peachy Keen at my local bagel place where my Brian is now getting us smoothies. And...I'm getting a cheeseburger with light light sauce and no lettuce or tomatoes. I'm on a beef kick b/c I want to get my iron levels back up. This place is a chain with bagel in it's name and makes a flat rectangular bagel for the burgers and they are wonderful.

I think the gig will be okay. The pharmacist said I could have a little coffee maybe a few hours after the Dex dose. I don't know...I'm thinking not today....Hoping my usual excitement at the thought of getting to perform will override the Dex effects.....

Thanks all of you for being so attentive and giving all of us such valuable observations. There are a lot of very bright people here are this board. Just think if we weren't bright and couldn't research etc., and had this beast to deal with ACCCCCK!

I think we all sort of sift and research our way to the right treatments and docs.

I get to gig tonight!:woohoo:

[camackin]

hey Janet,

i hope you feel better, break a leg tonight. =)

you're right, it's so nice to have this forum to talk to really intelligent people. i can't imagine what it would have been like to be diagnosed even 15 years ago before this site and before doctors knew even less than they do know about this illness. i'm so glad i don't feel alone. i've gotten so much helpful info from this site it's amazing, for the most part my doctors weren't the ones informing me!

i was talking to my friend today and she said she was really impressed that i am taking initiative to investigate new medicines and to really understand my illness (and that I'm taking up piano again to do something proactive while i'm trapped at home =). i really didn't realize that some patients aren't as proactive as we all are here on this forum and just live with the illness as is and get defeated. (although it's very easy to feel defeated at times.)

We should all be proud of ourselves for reaching to others here on the forum and for informing ourselves and being proactive!

[camackin]

ps, if i had a dollar for every time i said to myself "oh eating this won't really hurt, it's only a little bit..." i would be rich....and not in so much pain. =P

just got to take it one day a time!

[Melanie R]

Its my first day takling dex and I took it at about 6:45 pm. It has made me foggy and a little nauseaus and mellow as well. I am petite and also really sensitive to side effects as well. It could be the combo of other meds too. I take Neurontin 300 3x per day, Ultram 50mg every 4 hrs., Zoloft 200mg, and Valium 2.5 mg at bedtime or if have breakthru pain! I am also having some itching since the med kicked in too, but maybe it is just dry skin and I'm mistaking it as a side effect. So far, my symptoms seem a little better. I have a little less pain. I did eat a lot of no no's tonight at TGI Fridays! I had mozz. stix w/sauce, pot. skins w/sour cream, buffalo strips, a large coke, and chocolate! Oh my gosh, how awful!!!! I need to drink water I think! I hope my symptoms keep improving and I get used to the side effects :) I hope you all are doing better and better!!!

Take Care!!! :angel::pray::hi:

[ddscrazy]

I wish I could have eaten like that before even being dx with IC!!Thats amazing you can eat all that and not flare!!!I even look at tomatoes( which I Love) or ketshup,salsa,and I am in a flare!!Good luck with the Dex I can't get it where I am.It will only get better for you I am sure.

Diana

[Melanie R]

Hi there,

THis is so strange! I felt sleepy for a few hours on the dex and then got really wired and hot. I got this crazy energy and almost like hot flashes!! I am only 31 so I am def not hitting menopause! This is kind of funny....and now I'm settling down a little but feel still warm and am starting to have chills at the same time. My IC symptoms are still doing better than before taking the dex today. I am actually atleast feeling 30% better on just taking my first dose! Well, I hope I don't go insane or anything tonight because my boyfriend needs to wake up at 5:45 for work and I've already disrupted the poor thing with my hot flashes and energy spurt. I took my valium but ran out of ultram that I normally take at bed so hopefully it will kick in a little more soon! Sorry for rambling, I just can't stop typing....lol!!! :woohoo:

[Melanie R]

Hi Diana,
Oh my goodness, I hadn't eaten any tomato in over a year before last night...so I definitely pushed it! I just felt pretty good so I indulged a little more than I should have :) I must say though, the dex kept my flare to a 2 on a scale from one to ten. Isn't that amazing?? I am not going to go crazy with the food for a while though because I want the lining of the bladder to heal, but it was so nice to feel so good that I chanced it.:loco: Thanks so much for your positive thoughts on continuing to improve!!! I hope so....and think so too. I took it early this afternoon and hardly felt my bladder, but needed a nap by 6:30pm so I will see what happens tomorrow.

What is the reason that you cannot get a script for the dex in Cali??? Maybe your doctor is just too closed minded and you need to see someone better.:tsk: Where there is a will, there is a way!!! And I know that anyone with IC has a strong will to get to feel the way they deserve to feel!!!! Like a healthy human being with better quality of life :) Please don't be passive and be proactive in finding someone that will let you try the dex....I know there is someone that will help you even if you have to go thru a few docs beforehand! :angel: I hope you persevere and get some much needed healing:) :pray: Take Care Diana! :hi:

[justice4j]

First, I'd like to congratulate and recognize all of us who are proactive about discovering new, cutting edge treatments for IC and the other beasts that often accompany it. We deserve a lot of credit for that.

Yes....it's very difficult to get Dex in CA. My experience has been that if you live in north Orange County in southern CA, all the docs are scared to death of it with the exception of psychiatrists. They are used to Rxing amphetamines and therefore comfortable with and I don't think they are "red flagged" for Rxing it by the DEA as much as other specialists.

I get mine from a psychiatrist who is really brilliant and studies how viruses affect the brain. The viral panel is very expensive if you haven't met your deductible.:rolleyes: One of my levels is the 2nd highest my doc has seen in the 500,000 patient data base he has accumulated. This ties in with the upregulation of microglia causing "mysterious, chronic diseases." (Dr. Jarred Younger, Ph.D, post doctoral researcher of LDN for Fibromyalgia at Stanford University CA)

I increased my dose, on the advice of my doc, today...only by 2.5 mg., which means I took 7.5 mg. in the AM instead of 5 mg. Then I took the other 5 mg. 4 hours later. Tomorrow, I'm going up to 10 mg. AM and 5 mg. 4 hours later. What I also like about this doc is that he really listens and takes into account what my requests are and the fact that like everyone on this board, we all know our bodies very well.

I told him that he could become a real "hero in the IC community." I wanted to encourage him to treat more IC patients. I am not sure he is even taking new patients for a couple of months.

At my first appointment, I gave him one of our (my SO Brian on bass and me on keys) jazz CDs. I told him, "You will not really ever know me without listening to me play."

Before we sat down at the 2nd appointment, he immediately told me how much he had enjoyed listening to it, how relaxing it was to listen to and how talented we were. He seemed genuinely impressed and I think part of it was because he knew I had been really ill while we were recording it. Anyway....his kind comments really made me feel good. This doc is so caring and really wants to help people get well. This whole process is not inexpensive, but worth everything I've spent even though it has been difficult. He also writes very cost effective Rxs and gave me a good supply of Lomotil.

The good news is that although I really enjoy talking to him - he's beyond brilliant- I don't have to see him for another two months which will help considerably with the expenses. My pain level never gets above 3 anymore. I've now been on Dex 5mg + 5mg for 23 days. Again, I just went up on the dose today. I have a feeling I'm going to need 20 mg., maybe more to really get everything under control.

ttp://www.naturodoc.com/library/nutrition/aspartame.htm

is a link to an article on how aspartate/aspartame negatively affect the brain. No wonder aspartame can block Elmiron....it can do a real number on the microglia - "watchdogs" of the brain and spinal cord. Really intersting article.

[Wolfe]

Janet,

I've been really busy lately and haven't been here, but you've been on my mind, and I signed on today just to see how you're doing. I'm so happy to be reading good news from you! And if your CD is that relaxing, I'd like to know if I can buy one. Can you PM me?

Hope you are still doing so well. You're probably busy, out performing or celebrating, LOL. It sounds to me like everyone is discovering to take the dex in the morning, get mellow and then perk up a few hours later? I want to learn all I can in case I decide to ask for it this winter.

So glad you're doing well!

[funinsun18]

To hear all your sucess stories so far.I hope the ones it's working for will still work for you.I want to try it.I have a Dr apt on Weds.But I have a question...
I've been reading on Dextroamphetamine and seen it's used for ADHD.Now they are doing a study and showing (Dextroamphetamine is known to have profound effects on both subjective and physiologic measurements, but it is unclear to what extent these behavioral changes are a direct result of altered regional brain activation.)And...
In the present study, fMRI was used to measure both the spatial extent of changes (the number of pixels activated) and the magnitude of the blood oxygen level-dependent (BOLD) response. We examined the effects of motor, verbal, memory, and spatial attention task during fMRI in 18 healthy volunteers. Functional MRI measurements were obtained at baseline and again 75 min after an oral dose of 25 mg dextroamphetamine. RESULTS: Dextroamphetamine caused a decrease in the number of activated pixels and the magnitude of the BOLD response during the three cognitive tasks tested but not during the motor task.

Has anyone read about this and are any of you conserned about it?
Here are the links I found.
http://linkinghub.elsevier.com/retrieve/pii/S0006322304006705
http://lib.bioinfo.pl/pmid:7406657/pmid/sim

Thank you and lots of hugs
Machele

[ngazerro]

Hi funinsun18,

I am on 10mgs of dextro a day. I read the study and it does not concern me. I really think all meds have some kind of side effect. I have been on the dextro for over 8 months and had great results. I did not respond to other meds for IC , so it has been a lifesaver for me. Good luck with your doctor's appointment.

[ddscrazy]

HI Janet!
Glad you are doing so well!!You of all people deserve it, I believe we all do.Read your story on the cal.nurseswebsite,very interesting.Saw your picture now I have a face to go along with all the kind and informative messages you have sent me.Thanks again for all the kind and positive energy you have sent to me.It helps so much when you are so down.Having one of those crying days, not used to this always have been so strong feel like I am falling apart.Maybe just all the feelings I have tried to keep at bay are starting to surface.Denial has been a big one for me, sorry for the rambling...

I know by Xmas you will be feeling 100%.I am going to investigate and try to see if there is a way to get into see your Dr. at UCIMC.Like you have told us all dont be passive when it comes to our health and IC.

Thanks Again to you and all here for being such awesome women and men!!!

Love and hugs
Diana in Ca.