matthew.michalski

@PistolThank you, I appreciate all that you wrote here. The main MAIN thing though is my current financial situation... - I literally have no savings at the moment and I can start saving now, but that would mean I would have to save up money worth the cost of living for at least a year in my opinion which would take I am not sure how long. It gives me a great amount of anxiety about all of this, but I am trying to work on it and figure it out now before it gets too late. I always question if I should go this route in my head and just push through everything as I have been for the last 10 years. My symptoms have always been bad, but I think I am way more "aware" of my symptoms as I have gotten older and learned more and more which is a problem for me I guess mentally. I will definitely reach out to my PCP very soon and talk with him about what's going on for sure.

So I'm a 24 year old male with a diagnosis of multiple chronic illnesses including dysautonomia(POTS), Hypermobile Ehlers-Danlos Syndrome(hEDS), Narcolepsy, Fibromyalgia, GERD, Major depression, possible/probable MCAS & the list goes on... I have been really struggling over the last few years as it seems as if my symptoms get worse each and every year now. I am on 10+ different medications to help me the best possible, but majority of my days only working then sleeping. I am a Certified Pharmacy Technician in a retail setting so I am on my feet literally all day long which kills me. I am lucky enough to still be working the job as I have no other choice at the moment but to make money full-time(around 40-45 hours per week). My question basically is how I should go about getting state/federal disability benefits on a consistent basis. I currently do not officially have a "POTS doctor" or cardiologist. I am currently only seeing a Primary Care Physician, sleep specialist, and psychiatrist. I am planning on making an appointment with my PCP within the next 1-2 weeks and I think he would be the one to help me with my disability case if I do this. This is all very serious stuff to me and I am just trying to do it all correctly. If anyone has any ideas for me - I reside in New Jersey and I guess I would have to follow the state laws as far as applying, etc. because I am not sure if I can work at all the second that I apply for it. I could be wrong here, but if anyone has any experience in this type of situation then I would really appreciate the input. Thank you all for listening and help ahead of time!

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.

Just wanted to update you guys on the stimulant situation I have been having... I went to see that new adult POTS MD and I did not like him at all. He was a very strange guy, and I feel that he did not not want to deal with my chronic fatigue issue as he thought i was a mood problem as well. So I went to see my psychiatrist and she now prescribing me Vyvanse 20mg every morning to help keep me awake. It seems to work, but truly not as long as adderall worked. the initial effects were the same however or at least very similar. So from here I will be entering a POTS protocol/pain program within the next 2 weeks and I want to keep you guys updated on that because it will be at least 4 weeks of intensive exercise(PT, OT, psychotherapy, etc.) to get me back on track as I would like to be able to go back to college and have a full time job or at least able to keep a somewhat part time job. Thanks everyone for listening! Matt

@DizzyGirls Hmm, I will have to give the liquid caffeine a shot. It sounds interesting. And you're right, I shouldnt feel bad about taking certain meds I agree. I will see what my new MD says and keep you guys updated for sure!! Thank you!

@yogini the only meds that I take that could cause some fatigue is my high amount of xyzal that I have to take due to possible mast cell activation syndrome and my abilify 10mg every night for depression and anxiety. other than that nothing really. and my blood pressure is usually perfect like 125/70. but my heart rate is still pretty high so I should definitely start doing more cardio when exercising

Hi, So to try and make a long story short, I was diagnosed with POTS and Ehlers Danlos sydnrome 7 years ago, and I am now a 20 year old male. My number one symptom that I've had for as long as I can remember is chronic fatigue/brain fog, then followed by joint/muscle pain full body. I have been on stimulants I would say 5-6 years now, trying literally almost all of them. Starting with adderall, then ritalin, ritalin LA, focalin, quillivant xr, dexedrine, dyanavel, modafinil, strattera, adderall again and more adderall. Stressing adderall because that is the problem with the current situation that I am in. I started off with it about 6 years ago, but I could not tolerate it then most likely due to my lack of weight, but that has changed as I matured and aged. I have been back on Adderall for the last year and a half(19 months or so), and as much as I feel that it might be helping me, I deep down feel that it has also not helped me in ways. What I mean by certain ways that it has not helped me is possibly causing me more panic/anxiety in the long term, but not in the short term as I can handle it when it kicks in. I feel that my fatigue is a severe case of fatigue and I NEED to take it. When I don't, or I have tried not to take it, I literally suffer. I cannot get out of bed and I can't function without it. I definitely have built up an extreme tolerance and dependence to it, but the reason that I keep taking it is to not suffer for one, but also so I function to do the things that I want to do in life.. I was prescribed adderall xr 60mg/day along with adderall 30mg IR within the same day for a few months at one point because my fatigue was so bad. I have had discussions with my doctor about this and I've tried to even switch to the modafinil at one point because mentally I feel that I could not tolerate it any longer. Recently I went from my steady dose that I was somewhat able to tolerate at a dose of adderall xr 30mg in the morning, then 15mg xr in the afternoon, and now currently being weened off of it because my doctor feels that it is negatively affecting me too much mentally, so I am down to 20mg xr every day for the next 7 days then I will go down even to a lower dose than that. I do not feel like this is the right decision as he says that some POTS patients just have to deal with the fatigue. But I truly can't. I would rather take a medication in order for me to function and live my life than to not honestly. Due to the fact that I am turning 21 soon, I have an appointment with a new POTS doctor that actually is closer to me as well, and that appointment is in 5 days from now. I definitely want to talk to him about my chronic fatigue and go from there, but I don't know if I should tell him that I am being weened off of the adderall currently or if I should tell him that I am just on it, because I don't want to be weened off of it, as I feel like I am being forced to and that depresses me and makes me more anxious than I already am. In the end, no I don't want to have to take this medication for the rest of my life, I need to most likely exercise more than I do to help some of my symptoms including my fatigue, but I don't feel that right now is the right time as I would like to be able to just live my life and go on with it without even having to think about my fatigue each day, as it stinks that that's all I think about at this point each and every day. If you guys could possibly provide any feedback for me, any questions or answers, I would greatly appreciate it a lot and maybe some of you can even relate if you have taken stimulants currently or in the past! Thank you, Matt M.

Hi, So I have been diagnosed with POTS for over 5 years now I'm a 19 year old male. I really struggled Til I did the POTS clinic at children's hospital of Philadelphia back in 2013. Since then I've still had my symptoms of some tachycardia, heat intolerance, anxiety, GI issues, brain fog. etc. But it was managed very well overall until of recent. A little over a month ago I started on Accutane(the strongest acne medication for my cystic acne), and I took it for a month, then I did my one month blood work check up and my liver function came back over double of what it should be so I had to be taken off of it by the doctor 4 days ago now. At the same time I saw an allergist for full body general itchiness and he prescribed me prednisone 20mg & hydroxyzine 25mg 2x a day. The prednisone I took 2 tablets each day for 2 days then stopped it because I started feeling weird. The hydroxyzine made my brain fog/derealization extremely bad and so fatigued and I still feel it. The allergist gave me a shot that I didn't know what it was but he just said that it's something that would stop my itching. I don't know if it was a steroid or what but possibly that has to do with the way I'm reacting too. So now I'm having severe POTS/anxiety "attacks" as I call them. Trouble breathing, chest pain, bad tachycardia, really bad brain fog, shakiness, diziness, feeling as if I'm going to die & there's a sense of doom. These would be the attacks that I would have when I was first diagnosed with POTS and it's just bringing back terrible memories. I don't know if anyone can help me with telling me if it's the combination of stopping medication, the liver function, the shot, or what is going on because I haven't felt this bad in a while now and it's just a complete wake up to me in a bad way. This has been going on since 4 days ago when I stopped the accutane and stopped the prednisone and hydroxyzine too. Has anyone else had severe flare ups out of nowhere and how do you cope/manage them and get it better? Thank you for your time and for reading this, Matt