matthew.michalski Posted August 19, 2018 Report Share Posted August 19, 2018 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. Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted August 19, 2018 Report Share Posted August 19, 2018 I deal with my fatigue by drinking Mt dew every morning. Coffee does weird things for me but just that jolt of Mt dew helps me. Tell your new doctor you are being weaned by one doctor but you don't want to be. Patient feedback is important. That being said the longer you are on a high dosage the more it can give you undesirable side effects. Most medication is given based on risk vs reward. I hope you feel good about your new doctor and it seems like you have a long bumpy road ahead of you. Good luck. Quote Link to comment Share on other sites More sharing options...
yogini Posted August 19, 2018 Report Share Posted August 19, 2018 What is your blood pressure and heart rate? I found that when I got them moderately under control and started exercising, my fatigue started to wane. Also are you on any medications that have fatigue as a side effect? Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted August 19, 2018 Report Share Posted August 19, 2018 My daughters use Liquid Caffeine (from liquidcaffeine.com) to help them get going and get the cobwebs out in the morning. Coffee was upsetting their stomachs, but small doses of the liquid caffeine help. Don't feel bad about having to take medication. You kids have been dealt a really bad hand and if it takes some medicine to get through life, so be it. I'm sick and tired of doctors making you all feel bad because of it. If the adderall is helping, fight for it. Maybe your new doc will have some suggestions that might be better suited to you. Quote Link to comment Share on other sites More sharing options...
Pistol Posted August 19, 2018 Report Share Posted August 19, 2018 I definitely would keep weaning off, since you already started with that. But DO tell you new doc exactly how you feel about the weaning and about your difficulties - a new pair of eyes looks at things differently. He may just have the solution that you need! I know how terrible it is to live with that degree of fatigue. I used to think I'd rather not live than live like that. Fortunately I am on Ritalin and Guanfacine and my fatigue has greatly improved. I wish the same for you!! Get better - and please update us on your appointment! Quote Link to comment Share on other sites More sharing options...
matthew.michalski Posted August 19, 2018 Author Report Share Posted August 19, 2018 @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 Quote Link to comment Share on other sites More sharing options...
matthew.michalski Posted August 19, 2018 Author Report Share Posted August 19, 2018 @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! Quote Link to comment Share on other sites More sharing options...
WinterSown Posted August 19, 2018 Report Share Posted August 19, 2018 I am a coffee addict. It keeps me conscious. I'm drinking Peruvian right now. I have come across varying opinions from all my specialists. The colorectal surgeon doesn't want me having a drop. The cardiologist is okay with me limiting it to two middle-button-on-the-keurig cups. They have a coffee pot at the neuro and the local brain institute has a full keurig bar with a gazillion flavors of coffee and creamers--wow! Quote Link to comment Share on other sites More sharing options...
yogini Posted August 20, 2018 Report Share Posted August 20, 2018 10 hours ago, mmichalski23 said: @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 I am not sure that doing cardio would help your high heart rate. Have you ever looked into whether the stimulants you are taking contribute to your high HR? Quote Link to comment Share on other sites More sharing options...
Pistol Posted August 20, 2018 Report Share Posted August 20, 2018 5 hours ago, yogini said: I am not sure that doing cardio would help your high heart rate. Have you ever looked into whether the stimulants you are taking contribute to your high HR? I was told by my cardiologist that yes - stimulants do cause tachycardia. I take only half of the lowest dose of Ritalin and Guanfacine to avoid tachycardia but I still have good effects from the meds. Quote Link to comment Share on other sites More sharing options...
yogini Posted August 20, 2018 Report Share Posted August 20, 2018 11 hours ago, Pistol said: I was told by my cardiologist that yes - stimulants do cause tachycardia. I take only half of the lowest dose of Ritalin and Guanfacine to avoid tachycardia but I still have good effects from the meds. Yes, that is the challenge even with caffeine. It helps with fatigue but also causes tachycardia. For some people the extra energy outweighs the tachycardia but others can't have stimulants at all. Tachycardia also causes fatigue so it is something to think through carefully with your doctors sometimes you have to adjust your doses as it sounds like you did. I found for me getting my HR and BP under control and forcing myself to be active was the best cure for fatigue. Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted August 22, 2018 Report Share Posted August 22, 2018 Doesn't anyone else find the diuretic effects of caffeine a major issue with POTS? Coffee always used to make me pee long before I even had POTS! B x Quote Link to comment Share on other sites More sharing options...
yogini Posted August 22, 2018 Report Share Posted August 22, 2018 3 hours ago, bombsh3ll said: Doesn't anyone else find the diuretic effects of caffeine a major issue with POTS? Coffee always used to make me pee long before I even had POTS! B x Coffee has too much caffeine for me. I drink diet soda which I know is terrible for you - but it gives me just the right amount of caffeine to get though my day and I haven't found anything else that works. I gave up caffeine for about 1 1/2 years when I first had POTS and I found that I had more energy after I resumed it. I had to pee a lot even when I only drank water. I make up for the diuretic effect by drinking extra water. Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted August 22, 2018 Report Share Posted August 22, 2018 20 minutes ago, yogini said: Coffee has too much caffeine for me. I drink diet soda which I know is terrible for you - but it gives me just the right amount of caffeine to get though my day and I haven't found anything else that works. I gave up caffeine for about 1 1/2 years when I first had POTS and I found that I had more energy after I resumed it. I had to pee a lot even when I only drank water. I make up for the diuretic effect by drinking extra water. I agree. Drinking only water makes me pee like crazy. I drink a 16 oz bottle of Mt dew and I do OK. Coffee is way too much for me too. Quote Link to comment Share on other sites More sharing options...
matthew.michalski Posted September 3, 2018 Author Report Share Posted September 3, 2018 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 Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted September 3, 2018 Report Share Posted September 3, 2018 1 hour ago, mmichalski23 said: 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 Please update on the POTS protocol/pain program as well please. I have never heard of that and it will be interesting to see how it works for you. As a side note I thought my specialist was a little odd too, but the more I go the nicer he seems. It is like at first you are just data, but he warms up to you as he has a face to go with the numbers. Good luck!! Quote Link to comment Share on other sites More sharing options...
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