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Hi all,

I am trying to get any feedback/hear about other experiences that anyone is willing to offer me here right now as I am in a bad place currently, at least in my own mind and/body...

My current Diagnosis at 21 years old and has been this way since I was 14 years old is POTS, Ehlers Danlos Syndrome Type 3 hypermobile, gastroparesis, amplified muskuloskeletal pain syndrome(AMPS), depression, anxiety, ADHD, and possible bipolar disorder.

I was diagnosed with POTS at 14 years old at Children's Hospital Of Philadelphia, PA in 2012. Ever since my symptoms were starting to come on when I was 13 years old, I started to always feel tired and exhausted. By the age of 15 my POTS doctor prescribed me adderall at the time. I tried it I think 1-2 times and I absolutely hated it mostly due to the fact that at that it caused me to feel nausea and upset stomach. So going onto my high school years my psychiatrist prescribed me small dose of ritalin to get a better control of my brain fog/ADHD/fatigue. As my tolerance was built to it along with getting older, I was prescribed focalin, then quillivant xr(oral suspension form of ritalin to titrate my dosage of ritalin better and being a new med on the market at the time). I eventually maxed out of the dosage of the quillivant xr which was equivalent to 60mg of extended release ritalin per day.

After that, I felt that maybe this was out of the control of my psychiatrist and thought to mention my chronic exhaustion/fatigue again to my POTS doctor as I was still going to CHOP in Philadelphia, but managed under a new, very good provider there. He wound up referring me back to my psychiatrist to see if there was anything that she would further be able to help with since my POTS doctor was thinking that maybe this fatigue was truly caused by my depression and anxiety overall. So my psychiatrist put me on Dyanavel XR(the oral suspension form of Dexedrine which is an amphetamine at this point) and has me try that out. I am 18 now and it does work, however I actually was referred back to my POTS doctor at this point because ultimately my psychiatrist did not want to manage this any longer as she felt that my fatigue and exhaustion was no longer ADHD related and it was something on a larger scale due to me complaining of the fatigue issues ongoing and ongoing for years at this point.

So my POTS doctor from CHOP prescribed me something that is almost a last resort in a way, because this most likely isn’t prescribed to most people but it was Adderall XR 30mg, 2 times a day. I was on this regiment for maybe 7 months or so then I noticed that even though it was good regimen, that late in the day I was still getting fatigued and I still somewhat struggled. I am working at this point and able to function in a decent manner, but I wanted to never feel “fatigued/tired”. So i was given a short acting dose of adderall on top of each extended release dose. So i was taking adderall xr 60mg/adderall immediate release 30mg each day. This lasted about 2-4 months. I started complaining of severe racing thoughts, as you could expect from a high dosage like this. I was then trying modafinil and strattera for 1-2 weeks but I literally could not do without the adderall at this point. I am 19, working, and needed to focus hard each day at work. 

For the next 5-6 months i am prescribed adderall xr 45mg per day, 30mg upon awakening then 15mg at lunch time. That is my maintenance dose for those 5 months or so. As my family is now concerned that I may be physically dependent on adderall, my family intervenes, comes along with me to my doctors appointment in PA, and at the end of the appointment I am told that i will be weening off of the adderall for the next 6 weeks until i am not on it any longer. At this time I am being admitted into an inpatient chronic pain rehabilitation program to further help my fatigue/pain levels. We are now in Sept. 2018 and after rehabbing for 25+ days for mostly pain levels and going through intensive physical exercise/training/protocols to get me get back to work after losing my job due to my bipolar disorder, I ultimately end of back on an amphetamine of vyvanse this time but at a very low dosage which is 20mg. 

This is what I am currently on as of today in October of 2019… along with modafinil/adrafinil(supplement of modafinil).

I am currently not helping myself with exercising and a healthy diet, I always felt Adderall was the best for me to help my severe fatigue, and most likely other negative things.

I feel that I may need a higher dose of the current medication due to being on adderall which i considered stronger in the past when I had it. And I just feel like I am struggling/literally suffering to find a reason why I am so extremely tired and fatigued each and every day of my life.

If anyone has any insight or experiences with this class of medications, I would appreciate it… as I feel like I have failed at weaning from these medications in the past many times, but ultimately feel that I very much need them due to have a pretty intense chronic illness each and every day of my life.

Side notes - current meds

Cymbalta, abilify, vyvanse, salt sticks, florinef, xyzal, modafinil, omeprazole

Future appointments - sleep medicine doctor in November in PA

New adult POTS doctor in NJ where I reside in December due to no longer a pediatric patient - turning 22 in 2 weeks

Also, I have a job and need to find a way to keep it… I just want to feel better - and I really do try to stay as positive as can be, but it is hard at times.

Thank you for listening.

 

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Welcome to the forum.

Very sorry that you are struggling with severe fatigue and medication issues.

You may be interested in these past topics:

https://www.dinet.org/forums/topic/23655-need-help-with-justifying-adderall-to-insurance/

https://www.dinet.org/forums/topic/23147-adderall-ritalin/

You can also do a search for keywords within the forum to find past discussions.

 

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