Updates Regarding Add Meds Do They Help With Work; Fatigue?

[we_don't_look_sick]

Do the ADD or ADHD meds help with your fatigue and making it thru a work day?

I have tried Provigil (lack of sleep was making me drowsy driving to work). The Provigil would help me thru that day, but I would crash and need the next day off work.

My brain fog is terrible. I have trouble finding the right words for common things. I will reverse the order of my words in a sentence. I am having a difficult time hanging on to my job. I can see difficulties I am having, I feel better if I can sleep all day! My weekends consist of sleeping all weekend to make it thru another week at work. Mondays, after being at work, upright and concentrating all day and the noise; I come home to ehausted to eat and sleep until work time on Tuesday.

What Dr's did you see to try ADD meds? I am seeing a therapist finally. Maybe she will be a starting point.

[jenglynn]

I was in a kind of odd situation in where my GP doctor who I have been seeing for years and I really had to learn about POTS and the ensuring DX that came along with it, together. We didn't get a lot of help from specialists until I finally got the positive DX on the TTT and even then- neurology wouldn't touch me and cardio didn't want me. So we just worked on getting me to Mayo, which finally happened and at least I received the different diagnosis' that I needed- even though they were not what I wanted to hear.

On to your question though, she was always willing to try different things with me because she knew me so well and could tell how fast I was deteriorating because we have a history. She could tell a difference in how I talked, the brain fog, the concentration, just in trying to talk to me. I saw on the Dinet site that certain ADHD/ADD drugs can help so I suggested that maybe we try Adderall just to see if it would help me with my concentration (I am also a full time grad school student- online program so I NEED to be able to focus). She was very willing to give it a try and see how it works. She had prescribed me Paxil 2 weeks before and the combo on the serotonin in the anti depressants and the dopamine in the ADD drugs is supposed to help certain patients. In MY case, it could not have been more true. I am pretty much completely disabled so I can't speak for work exactly, but I am able to carry on conversations easier, find words in my brain more often where before I would just lose my train of thought. AND...I have to say that they combo of those two drugs together made an enormous impact on my anxiety- to the point where I just really didn't have it anymore. I am on a very low dose and I recongnize the addictive properties but I also think that if my body didn't need it in some way then I would have had a more negative reaction vs. what I've had. It hasn't changed anything really... I don't get hyper, I have not had an appetite decrease (I have had zero appetite but that way pre-dated starting the Adderall) and I sleep fine except when I am having adrenal surges like tonight. It doesn't make me feel anything but calm.

I am very aware that this is controversial and these drugs are as well. Many people strongly are opposed to them being taken for our purpose. I was at a point where I really needed some cognitive help and my doctor could see that clearly in her history with me so we decided to give it a try. In my case, it has worked great. I am sure that it would not work in all cases and there are risks to consider (raises blood pressure, HR, decreases appetite, causes weight loss, etc) I even debated about responding because I know how these discussions can get heated. All I can say is that for me... it has been a success and of all the drugs I have tried it has been the most beneficial (along with the SSRI) to help deal with the anxiety and cognitive function.

Not a decision to take lightly though... Do lots of research and realize there are risks such as the side effects I mentioned above as well as others and of course the risk of dependence. Good luck and feel free to ask any other questions!

Jen

[we_don't_look_sick]

Thank you Jen

It sounds like the Mayo Dr is the Dr that tried different meds.

[hilbiligrl]

I am seeing an integrative doctor, he is my primary, he is also a rare case doc and is open to new approaches, even if they aren't accepted mainstream. I have wanted to try provigil or adderrall to see if it will give me energy. I've wanted to try them both, at different times of course, but i haven't yet had that talk with my doc. I will be talking to him about it on our next visit in a few weeks though. I am curious as to how many these type meds help with our type diseases and the relentless exhaustion on all levels......

glad someone posted this

[ramakentesh]

Mestonin helped me with brain fog but only for an hour or two.

[jenglynn]

The only one I tried was Adderall and I was lucky enough to have it work right away so I didn't have to go through side effects or having to try different others and go through the trial process of any other drugs.

My oldest son was misdiagnosed with ADHD about 4 years ago and was prescribed Adderall. We knew pretty much immediately that it wasn't for him. He became aggressive and emotional. He could not sleep and went 2 nights without sleep. He would cry constantly (he was 10 at the time). His concentration and focus was worse than before.. After 3 days, we discontinued the medication.. Tried another ADHD med that had the same result. We took him back in to the child psychiatrist for answers. After a while, it became clear. He didn't have ADHD he was just in a difficult phase and had a personality conflict with his teacher. Now, he is fine. My point is, it is obvious quickly if the medication will work in our experience.

I noticed an immediate difference in my cognitive level, my concentration, and energy level. I want to make sure that I am clear that it does not improve my other autonomic neuropathy symptoms (low BP, tachycardia, syncope, etc). It doesn't change those either way. It doesn't raise my HR (it will with some though as well as BP). That is why I believe I was deficient in serotonin and dopamine and the combination of the two of those in the two drugs and my cognitive symptoms dramatically changed immediately as soon as I began the Adderall. I had already been on the Paxil alone and it wasn't until I tried the Addreall with it that my symptoms (cognitive like I said) went away. Prior to starting these drugs, I had an extreme anxiety problem. Had never had anxiety in my life and it seemed to develop overnight. It was an absolute nightmare. My doctor tried Ativan first which, for me, was awful. It seemed to go through my body so fast that I was almost constantly in withdrawal. Within two hours of taking it, I'd feel so anxious and shaky I couldn't function. Like I said, before this flare began in April I had never had anxiety and what a horrible feeling. I next tried Klonopin and Valium. After I started the combo of Paxil and Adderall- my anxiety improved and I no longer need an anxiety medication.

That's my experience. The relief from the anxiety has made a big difference in my life... And my ability to cope with my autonomic dysfunction neuropathy, auto immune deficiency and EDS. The only time I experience severe anxiety at this point is with adrenal surges which have lessened slightly but still get them far too often. If you have questions about how the ADD meds helped me specifically feel free to ask. I have lots of specifics. Be warned, however, they won't work for everyone and they do have serious side effects for many, and are habit forming. Many doctors are very against prescribing these drugs, especially when it is for POTS which is so poorly understood by most doctors. If you have a doctor who is willing to listen and try new things, especially for concentration and focusing issues.

Jen

[kclynn]

My son is taking a very low dose of Focalin XR. He hasn't missed a day of school since he started it around Christmas, the longest stretch in 2 years, and his grades are up as well (because he can understand what they are actually saying, with the brain fog he said it was like they were speaking a foriegn language). I hope it continues and he hasn't had any side effects but some people can have significant side effects. Ask your Dr. what is right for you.

Edit: I should have mentioned that when is wears off all his symptoms return but the focalin xr lasts 12 hours so it does get him through an entire day, including homework time. He has had trouble with insomnia and that isn't worse and I dare say might even be better. Maybe his brain and body are getting a better workout during the day and he is more tired at night as a result.

[yogini]

Any med that works hold theoretically help with all symptoms and help you have more energy and better enable to work - if your bOdy is receptive and you have the right med. Right now I take Paxil, but in the past BBs, Florinef and midodrine have all helped with my energy level.

[sandymbme]

I tried adderall, fairly early on in my journey, so at least 2 or 3 years ago. For me, there was not enough overall benefit to outweigh side effects and risks. The XR would keep me awake for exactly 12 hours, almost to the minute! But I didn't really see any cognitive improvement. I was awake, but not any better at comprehension, still "blanking out" on words, (which we STILL haven't dx'ed the cause or come up with effective treatment, sigh!) and getting lost, geographically as well as conversationally. That was the only drug in that class we tried, just didn't like the way it made me feel. But I'm glad for others it helps!

Sandy

[we_don't_look_sick]

Thank you for all the input and stating how the medicine affected you. The last time I spoke to my pcp's nurse before the Dr came in; the nurse said insurance probably would not pay for Provigil (i have taken before) or adderal, etc. She was right, but it didn't occur to me to find out what the cost was and pay for it out of pocket. That sounds crazy, but that is how my brain sometimes functions; oh insurance won't allow it; so I can't try it.

I will remind the Dr of the NCS and request to try one. I think Provigil is stll expensive; maybe one of the older ADD meds will be less expensive.

I VERY much lose concentration and seriously struggle with finding the right word; even simple words.

[janiedelite]

Provigil was $8 a pill for me to try. I ended up just buying one pill, to try it out. While it worked, I had more chest pain and tightness and jitteriness. I crashed hard 8 hours after taking it.

[we_don't_look_sick]

Provigil is expensive. I tried it and learned if I ABSOLUTELY had to be awake for some event, it would work but I would crash terribly afterwords. At one point I could take it 2 days in a roll and feel alert but the third day I would miss work and sleep.

Then I tried only using it 1 day at a time. I would come home and crash immediately. The last time I tried it to wake me, I slept the entire time. I am not sure what it was doing to my system, but it was not making me awake nor alert.

I will try ADD med but I am prepared for it not to work. I hope it will but...

[jenglynn]

Sorry to hear about your bad experience, Sandy, with Adderall. Anything that keeps us awake at night more than we already are cannot be a good thing And since it didn't help brain fog, concentration, etc, it wouldn't do much good to try the regular, non XR dose.

For some reason I don't understand, ALL drugs, not just Adderall, seem to just fly through my body. If something should last 12 hours, like Adderall XR is supposed to, I'm lucky if it lasts 6 before any benefits are gone. Midodrine (I take 15 MG 3x a day) I know is a short lasting drug, but for me, it's ridiculous! After 1 hour, any effects are gone. But for that hour, my low BP behaves a bit better so I continue with it. There must be some "reason" my body metabolizes pills so quickly (usually in about half the time of normal) but I don't know what it could be and I'm hesitant to even bring it up to a doctor... I've been called crazy often enough.

So, sleep has never eluded me due to Adderall but I don't sleep well due to nightly adrenal surges which occurred months before I ever started the Adderall. I got the okay from my neuro to start taking Benadryl at night to help with those, so fingers are crossed.

I really hope that the ADD meds help those of you considering them. I have to say I take mine in combo with an antidepressant and my doctor felt it was the combination of the two that helped me so much. I've never tried Adderall alone without my Paxil. I do think most people know fairly quickly if they will work or not. If you are losing too much sleep or weight, that's not good. I gradually increased my dose so never really had that issue.

And it's helped a TON with my anxiety, and helped with concentration, brain fog and focus as well but I have a LONG way to go. By no means is it a cure all. Besides my normal POTS brain issues, I have Post Concussion Syndrome after 7 or 8 concussions now to date. I'm not sure which condition is contributing more to my issues but the days with Adderall are better than the couple days I've tested without, but miracle cure it isn't. I still struggle but it makes it a little easier for me to focus, stay calm and try to concentrate. I'm also better at recognizing WHAT is bothering me when before I would have a clue.

Jen