Started Dex

[Mothergoose]

After a rocky start to actully get my hands on the dex, I got the script but had a hard time getting in hand.

Well I started last Sat. I am not sure what I expected but I seem to have very little side effects, just a bit of a funny taste in my mouth and less hungery (oh no!). I take 5 mg in am and 5 mg at noon, not the long acting. I find it works well on bladder pain, I pee way more volume at a time with a bit stronger stream, which is something for me, so I am in love with this even if it does nothing else for me. I have a bit more frequency but at least now when I feel I need to go I can actually go, and get some relief.

My lower back is still sore but I have over all been feeling better so probalby doing to much.

I have been finding that by evening my symptoms return so yesterday I took my secound pill an hour later, and today I am going to take it another hour later. I am on my 5th day so far so I think i will slowly make more improvements as I go, I am not going to change doseage at all untill I have given it probalby a month or so and see where I am at.

This med does not speed me up or make me jittery, in fact I think it makes me more tired.

I have been cutting back on my other meds, I am still taking 10mg of hydroxizine at bed time, I will probably not quite this as I found it helpped alot.

The other thing I have started just today is MSM and Glucosamine, I started this because I have been reading posts here that some people have been finding that it helps with the bladder, simular to elmeron (sp) I have not tried elmeron. I bought a fairly low dose of MSM and Glucosamine because it is expensive and I am not sure if I can take it, so I thought I would start low and if I could tolerate it I would go up from there, and if I can't take it I can give it to my dog, but a higher dose it would be too much for her.

[SandraCT]

This is great news, Mothergoose!! I know how awful it is to deal with retention. I am going to ask my new Uro about this tomorrow. The only thing that concerns me is that I already go about 20 times a day. But it's usually little dribbles so if I can get that heavy stream/flow back, I'd be thrilled. Plus I could possibly loose some weight????? Yipee!!! Can I ask you what the hydroxizine is? Does this help w/ your bladder? Please keep us posted on your progress!! Wishing you the best.
Sandy

[Mothergoose]

hydroxizine is an antihistamine I probably spelt it wrong, but it did help with my bladder, it is hard to explain how it just felt better. There are a few threads about people haveing really goos sucess with antihistamines, because IC cause mast cells to from in your bladder

[Elle]

I'm glad it seems to be helping and hope it continues for you. I'm considering trying it and was wondering what brand of Dextroamphetamine you're taking. I'm just so ready for something that gets this stuff under control. I'm just really tired of feeling like crap all the time and having to prretend that I'm just fine for the sake of my family.

[justice4j]

Hi,

The Dr.'s office called this afternoon and I was able to be scheduled for 10 AM TOMORROW:woohoo::smile tee

Which means I have a lot of typing out med hx, posts and articles. I probably will not try this until Friday when I don't have anything to do.

Please everyone keep me in your thoughts, prayers, and requests to the Universe for healing. I know everyone understands how badly we all want to get well or at least feel better.:smile tee

[snowgirl]

After a rocky start to actully get my hands on the dex, I got the script but had a hard time getting in hand.

Well I started last Sat. I am not sure what I expected but I seem to have very little side effects, just a bit of a funny taste in my mouth and less hungery (oh no!). I take 5 mg in am and 5 mg at noon, not the long acting. I find it works well on bladder pain, I pee way more volume at a time with a bit stronger stream, which is something for me, so I am in love with this even if it does nothing else for me. I have a bit more frequency but at least now when I feel I need to go I can actually go, and get some relief.

My lower back is still sore but I have over all been feeling better so probalby doing to much.

I have been finding that by evening my symptoms return so yesterday I took my secound pill an hour later, and today I am going to take it another hour later. I am on my 5th day so far so I think i will slowly make more improvements as I go, I am not going to change doseage at all untill I have given it probalby a month or so and see where I am at.

This med does not speed me up or make me jittery, in fact I think it makes me more tired.

I have been cutting back on my other meds, I am still taking 10mg of hydroxizine at bed time, I will probably not quite this as I found it helpped alot.

The other thing I have started just today is MSM and Glucosamine, I started this because I have been reading posts here that some people have been finding that it helps with the bladder, simular to elmeron (sp) I have not tried elmeron. I bought a fairly low dose of MSM and Glucosamine because it is expensive and I am not sure if I can take it, so I thought I would start low and if I could tolerate it I would go up from there, and if I can't take it I can give it to my dog, but a higher dose it would be too much for her.

personally I would stay on the atarax for a few reasons one of them being to help you sleep at night from the dexedrine effects. Vicky

[justice4j]

Vicky,

I'm not going off Atarax. In fact, I think I'll go back to Vistaril 50 mg. at hs.

I'm sensitive to meds. I hope this works better than Ritalin did for you - but they are TWO DIFFERENT drugs. Ritalin may not reduce the GAG permiability like Dex does.

I need to sleep and I can't.

[ngazerro]

I started my atarax back after coming off of it for about two months. My doctor and I agreed it was better for me, since my bad reaction to watermelon! Now I am back on it , I wonder if I could eat watermelon?? :tsk:I guess I should not try it!!:smile tee

[Mothergoose]

hydroxizine I never planned to quite this.

[justice4j]

Hi Everyone,

I had an hour and a half appointment with a psychi that is really over the top smart.

He feels there may be dormant viral issues so I had a viral panel drawn. He readily agreed to Rx the Dextroamphetmine. It wasn't ready until 1:30 PM, so I only took 1/4 tab. I felt MELLOW within 2 hours. This was quite a surprise to me. I had 3 students this afternoon, so I wanted to be cautious, couldn't resist at least trying it, hence the 1/4 tab.

Since the appointment was only made at 4:30 PM Wed., I had quite a task of summarizing my medical history, plus printing out my docs names and numbers and my meds with dx. So, I only got about 4 hours sleep.

I will probably try 2.5 mg. tomorrow morning.

Right now, I feel calm, like the IC and PFD pain are down a few notches. I find it really interesting that I'm not jittery at all; in fact quite the opposite!

Without the support of all you wonderful people at the ICN, I might not have had the tenacity to pursue this. I have to check, but I think it took me 3 weeks.....

I would at this point encourage any of you to discuss dex with a psychiatrist. They have a real handle on how to manage this therapy.

[camackin]

I'm glad it seems to be helping and hope it continues for you. I'm considering trying it and was wondering what brand of Dextroamphetamine you're taking. I'm just so ready for something that gets this stuff under control. I'm just really tired of feeling like crap all the time and having to prretend that I'm just fine for the sake of my family.

the brand name is dexedrine or Dextrostat. i'm taking dexidrine but as long as the drug is Dextroamphetamine sulfate.

[justice4j]

My Rx is for Dextrostat too. I did some reading and found out that Orange Juice lessens the effects of dextroamphetamine sulfate. Also read that Dex takes away the sedative side effects of chlorpheneramine - an old antihistamine now OTC for at least 20 years.

Now, I'm wondering if Dex will also lessen the sedative effects of Atarax and Vistaril that some people struggle with. Since many of us have allergies and that's an important part of managing IC, it seems like for some of us Dex and Atarax or Vistaril make a good combo.

Symptom Report on a Scale of 1-10


Frequency is down to about 1

Bladder Pain 1

Piriformis trigger point pain 2

Psoas trigger point pain 2

Those two muscle groups I mentioned are external trigger points common to PFD.

The weird thing is I feel a littleTOO calm....like I'd love to start tearing into some much needed house cleaning but don't quite have the energy.

Called the doc to see if I should take my dose at night??? Asked pharmacist if she had ever heard of this side effect to Dex - NO.

I'm sure it's just some sort of adjustment period, but I must have really unique brain chemistry to react this was to a stimulant. :confused:

Still:woohoo::woohoo::woohoo: the pain is almost gone only 28 hours later and two baby doses.:woohoo:

[camackin]

that's so awesome!

[snowgirl]

Vicky,

I'm not going off Atarax. In fact, I think I'll go back to Vistaril 50 mg. at hs.

I'm sensitive to meds. I hope this works better than Ritalin did for you - but they are TWO DIFFERENT drugs. Ritalin may not reduce the GAG permiability like Dex does.

I need to sleep and I can't.

who knows have any studies been on ritaling or dexedrine reducing thg gag layer/ Vicky

[snowgirl]

My Rx is for Dextrostat too. I did some reading and found out that Orange Juice lessens the effects of dextroamphetamine sulfate. Also read that Dex takes away the sedative side effects of chlorpheneramine - an old antihistamine now OTC for at least 20 years.

Now, I'm wondering if Dex will also lessen the sedative effects of Atarax and Vistaril that some people struggle with. Since many of us have allergies and that's an important part of managing IC, it seems like for some of us Dex and Atarax or Vistaril make a good combo.

Symptom Report on a Scale of 1-10


Frequency is down to about 1

Bladder Pain 1

Piriformis trigger point pain 2

Psoas trigger point pain 2

Those two muscle groups I mentioned are external trigger points common to PFD.

The weird thing is I feel a littleTOO calm....like I'd love to start tearing into some much needed house cleaning but don't quite have the energy.

Called the doc to see if I should take my dose at night??? Asked pharmacist if she had ever heard of this side effect to Dex - NO.

I'm sure it's just some sort of adjustment period, but I must have really unique brain chemistry to react this was to a stimulant. :confused:

Still:woohoo::woohoo::woohoo: the pain is almost gone only 28 hours later and two baby doses.:woohoo:

My Np friend said then sometimes it can show that you had add as an adult. If you are so calm now. VN

[Claredale]

I must admit that I have read just a little about the Dex treatment option, but I wanted to point out something that Vicky said. My son was diagnosed with ADD and when he started on Ritilin in the 2nd grade, I was so worried about it since it was a stimulant. He was treated by a neurologist and a phychiatrist. I could have put him through thousands of dollars of tests to actually get the the full diagnosis, but his therapist pretty much said that in his years of dealing with ADD and ADHD, that just giving the med a try was not harmful. If he in fact had ADD, the meds would work more as a sedative then a stimulant. Since he was only in 2nd grade, I had my doubts, since 2 other doctors tested him (paper tests) and found him borderline ADD. He wasn't hyper at all...anymore than any other 7 year old. So I started him on the meds and I saw an immediate change. It was if I was watching his mind slow down. Prior to being on Ritilan, I couldn't give im 3 simple things, like go put your shoes on, turn off your bedroom light and brush your teeth. Most of the time, maybe one of those requests would be done because his mind was going in so many directions at one time. I took the med just to see what it did for me. I was up cleaning my house for hours. I felt as if my heart was going to come out of my chest and I ended up with a huge headache. And that was on a child's dosage. I also had IC then, and I can remember that I was more active due to the meds and didn't focus on my pain. I do remember that my freq did go up as well during my guinea pig experiment.

I am not ruling out the dex theory at all, especially because my younger son was the king of complaining prior to starting on ADD treatment. Growing pains for him were the end of the world. He did have stomach issues...still does 15 years later, but his complaining of that definitely decreased for a short time. I realize that ADD meds are not the same as the DEX, but again the idea is similar, especially going through it with my son. We had great success that totally changed his behavior. He received awareds for the most improved academically and behaviorly for his entire grade. He made 4 Fs his first 6 weeks, then we put him on the meds and he made straight As the rest of the year. Even though he wasn't ADHD, he still was a dispruption in class because of his whining. If his lunch wasn't what he wanted he would cry to the point that it effected the class. If he lost a pencil, he was upset, etc. His request to go to the office to call us because he didn't feel well, definitely decreased. I guess my fear of Dex is that he was as he got older, his need for the meds increased, which normally is the case, but his was more than I read was the norm. It could have been that he just didn't like taking it, so the older he got, the more he "made it hard" to treat. He couldn't handle the "let down" at the end of the day. By then they had meds that advertised that they didn't have that sinking feeling. I don't know for sure if he was being honest or not due to his total unwillingness to be on the meds. He was already a small child, so the not eating made him upset. He was like me in that he didn't get much sleep, so putting him on meds to help him sleep really "ticked" him off.

Now I truly believe he still has ADD, but for the most part he is using it to his benefit. He will only work jobs that he enjoys, study for classes he enjoys and has friends that will meet his needs. He just finished his 3rd year of college and only the classes that applied to his major" were the classes that he even tried in. The others, were a waste of our time and money. So this year, he is learning about he real world and working fulltime. We decided that we weren't going to pay for college when he would apply himself to all of his clases. He refuses to take his meds now and being 3 1/2 hours away, it's impossible to enforce our rules. To many, he is hard to "understand", but the friends he has are many of the same people that he has had since he was young and are great friends. They all know his little quirks and that is just fine with them.

Sorry to get off the subject, but I just wanted to mention that those kind of meds are definitely sedatives to those people that ordinarily have ADD tendencies. I bet you if I gave my husband one, it would do the same thing with him. I truly believe he has ADD/OCD traits, but luckily he has a job that those traits are a good thing.

T83

[justice4j]

Hi, and thank you both for your input.

T83, your description of your son hit home with me. When I was in my psychi appointment, he asked if I lost things alot and became upset easily by that. Yes, big time. My SO was there and when the doc asked me to rate it 1-10 I said it's pretty bad and looked at Brian who said "8". Same thing with wigging out if the computer does something stupid "8" irritated in traffic "7-8".

Having Brian there was so important. He knows my bad temper with the above mentioned things, and over looks it. I almost never completely go off on him- I really love him and he is so good to me. But, I ashamedly admit I did one tiime. He was completely understanding and forgiving.

Also, I made good grades during my RN program, but I had to tape the lectures and the re-write my notes every day. Sometimes I would read them out loud to myself to help focus.

The doc then asked me how I felt if someone asked a "stupid question" during the nursing lectures. Well, there was one of my fellow students who was very smart and very nice. I would just about have all of what the teacher was saying written and she would raise her hand asking about something 4 paragraphs back. It drove me nuts.

Also, if Brian and I are having dinner out and there is just a "white noise buzz" of conversation going on around us, I'm fine. I can fully concentrate on our conversation. He tends to be more quiet than I am so it's usually a matter of I'm telling him some cute story about one of my little darling students and enjoying him talk with me. But, if there is someone having a loud conversation where I can hear every word whether I want to or not, I have a hard time concentrating on what I'm trying to say or what Brian replies.

I also cannot read a book in a situation similar to what I described above. I can read on an airplane, but not if someone nearby is having a conversation that I can hear.

Something else I mentioned to the doc was that b/c I am a musician and have really good relative pitch (I've played by "ear" since I was 3, by the time I was 6 could sound out songs from the radio with both hands. I didn't even have formal lessons until I was 9) my ears are drawn to sound in a way that I don't think non-musicians ears are. I'm just very "sound" oriented.
It also has an impact on my concentration - if I hear a song being played at a low volume say in a grocery store, my hearing will zone in on that and I actually can "cut through" everything around me and hear it when Brian can't. Brian is also a musician, but he even can't believe the way I can do that.

The doc's comment at that point was, "Oh yes... you are definitely very right brained." I once made a comment to someone I know who has a neurobiology background that every musician I've ever known well enough had bouts of either depression, ADD, or some mood disorder. This friend said that this made sense because of being so right brain dominant.

So, I guess my body just has to get used to this and it will take some time, but I'll hang in there.

Thanks T83 and Vicky for your input. It really helped everything make more sense.

One other question/comment - I am really pretty focused while on the computer but don't like to be interrupted when I'm writing, whether it's here, a speech, etc. Sometimes I get a little over the top researching etc, and I have to not let myself get irritated when Brian just wants my attention.

Any other observations you can offer I'd like to hear.

[Mothergoose]

I am going to jump in here two things one of my son's best freinds is ADD on meds most of the time (optional in house when he not in school) and my son does and always have compensated for him, he does it without thinking so i realate to the want of your son and his freinds that know and understand him.

Secoundly I don't have any ADD tendencies, or right brain, but Dex does not speed me up, but all meds work in reverse for me. I read an article on IC and it said it is comman for IC pataints to have drug sensativities which I do and for them to work in ways not expected to.

Don't mean to take away anything from prevoius post, I think they are both very true, but there maybe more than one way to look at the picture.

[camackin]

i know i don't fully understand all the complexities of how dex interacts with our bodies and the other meds we are taking. everyone's body chemistry is slighty different so ppl can react quite differently to the same meds. i know i don't have ADD or ADD tendencies but the dex did make me sleepy. it's getting alot better now though after 10 days i feel more energetic than i have in over a year.

[ngazerro]

When doctors prescribe adderall for ADD, the doses are much higher for them to work. I think they start kids with 30mg and go up to 60mg. I don't think you can dx yourself with ADD by the calming effects of 5mg of dextro. First, almost of us are on other meds that might be causing the effect with the dextro. Also as we all know, people with IC alot of times have different reaction to meds. I don't have ADD, and sometimes I do get the calming effect and sometimes I get lots of energy. It depends on if I had enough rest the last couple days. Having fibro, my mind gets tired sometimes. Fibro fog can make you think you have ADD. The dextro does help with this most of the time.

Nina

[snowgirl]

my certified nurse pract/ family practice friend said in order for you to have ADD as am adult you must have been diganosed with it as a kid. Vn

[lisabar36]

I am so happy to hear that it does work, and am happy for all of you that have such great success. I don't know why it increased my frequency as it did and made my bladder hurt. I tried it 2 times. :confused: I can only think my bladder is super sensitive to whatever it is made up of for some reason.
j56, you mentioned going on Vistaril from atarax? I was just curious if Vistaril helps you better? I asked for Vistaril and they told me its the same thing as atarax and I know that its does the same thing, but I wanted to try it instead of atarax because its slightly different ingredients.

[justice4j]

Hi Lisa,
Dr. Parsons switched me to Vistaril 50 mg. b/c I was still having breakthrough allergy symptoms after taking Atarax 100 mg. at bedtime for years. I had been in a 15 month flare and that's what Dr. Parsons did to try to help bring it under control.

Also, Dr. Parsons also said that Dr. Theoharides believes that IC patients should have brand name meds. b/c the quality of generics is sometimes questionable.

No, Atarax and Vistaril are NOT the same drug. Atarax is hydroxyzine hydrochloride and Vistaril is Hydroxyzine pamoate. They're closely related but not the same drug.

I chose the generic Vistaril b/c the brand name would have been $200 dollars for a months's supply. Like many of you, I'm on multiple meds for multiple diagnoses so I have to keep costs down as much as possible. I have lousy insurance, and of course can't change due to all the pre-existing dxs.

Hope that helps.

[jen74]

I was reading the post that said someone believed that in order for an adult to have ADD, they would have had to be dx with it as a kid. Actually alot of people are not DX until later in life when they are adults. These people some times have overlapping disorders that hide the symptoms. Also, some kids are just never Dx when they are young or are told that it is just their age and it will pass.
As far as what your Nurse Pract. was saying, I am guessing she is saying that no adult can get ADD, that you have to of had it from birth? Actually there are some drugs that can bring out ADD, even in adulthood.
Jen

[Claredale]

Jen, that is true. I know 3 people (adults) from my church that were diagnosed with ADD as adults. They have a harder time getting treatment because most insurance companies only pay for the meds to treat it for a year. At least I know my neighbor that's job is medical sales now has to pay for his own meds and treatment. If he would have been diagnosed as a kid (per his insurance) they would have continued treatment. His son is my younger son's age. They have known each other for years. We live 3 doors down from each other. This kid has major ADHD, Turrets, and OCD. As "free spirited" as my son can be, he could never stay friends with this kid long. Believe me he tried, but he couldn't. I talked to my friend about this extensively (his ADD diagnosis) when we worked as youth camp counselors together. He said that he was fine as a kid, got his work done, etc, but always called "hyper". I guess that is how our generation grew up. No meds, just NOOOO sugar! But certainly ADD can be diagnosed as an adult. I truly believe that all of us could have some tendencies for it. Like someone posted before, depending on our sleep amount, meds, etc. I remember very well that I used to be borderline OCD and even papers scattered on my desk they way they are now would have driven me crazy. There are definitely times I miss those days, because I definitely kept my house clean and my stuff straight. I use to be a huge list maker and it was my goal to cross things off my list. All that has gone away!

Tracey

[lisabar36]

I know many people that are diagnosed with ADD as adults, alot of times the diagnosis can stem from when they were young, but they never received proper treatment. Also some develop it as they are older to. I worked with the elderly, and a few were diangnosed then also. :)