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Can't Find Medications That Work (And Unusual Pots Symptoms)


abc

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Hello, I'm new to the forums and was diagnosed with POTS about 1.5-2 years ago. I can't seem to find any medications that work in treating my symptoms. The only medications I've been successful with so far have been amphetamines, and even with amphetamines it just makes it easier to work through my symptoms.

Here are my symptoms:

  • EXTREME fatigue - can barely get out of bed without some sort of stimulant. This fatigue is unusual because it takes all of my willpower to brush my teeth, but I can still somehow manage to jog at a decent speed on a treadmill with much less effort. This is by far my worst symptom, I wouldn't mind the others so much if I didn't have this one. This fatigue lasts 24/7 (tends to be worse during the day than at night though) and I have not found anything that gives me relief (stimulants and naps help with me deal with it though)
  • Physical fatigue/pain/muscle weakness - I'm not sure exactly what this one is, because it's subtle (but still impacts me a lot) but my whole body is sore/in a little bit of pain almost 24/7. May have to do with poor blood flow?
  • Weak emotions and anxiety - my emotions feel blunted (though that could be the medication I'm on) and I've had anxiety for many years.
  • Slight dissociation at times - I believe this may in some way relate to the weak emotions, but that's just a hunch.
  • Dizziness/pre-syncope and raised heart rate on standing - Have never actually fainted from this.
  • Standing still too long causes my legs to turn red and become itchy and very uncomfortable.
  • Heat intolerance - get sick/discomfort/feel faint when exposed to too much heat.
  • Exercise intolerance - This one is very atypical for POTS. I do get exercise intolerance, but only afterwards and sometimes the next day (or few days) if I push myself too much. I am able to do cardio for a long time (30 minutes, hour, up to 2 hours once), but I can only lift/resistance training for about 20 minutes before I'm completely out of energy and my body feels very weak (even if the muscles I'm working out aren't entirely fatigued yet)
  • Insomnia - It usually takes me 1 hour+ to fall asleep every night regardless of how tired and/or fatigued I am. If I go to sleep earlier than usual I almost always wake up 2-3 hours after falling asleep. The later I go to sleep, the easier it is for me to fall asleep. I believe this insomnia is due to an antsy/stimulated feeling and being unable to relax (also sometimes I have racing thoughts, which is more related to the anxiety). May be because of sympathetic dominance at night time? Sleep medications don't really work for me, 90% of them have me feeling hungover in the morning, which usually lasts for the whole day. I get this hangover from even light sleep-aids like melatonin.
  • Extreme exhaustion, burning eyes, and sore/stiff body upon awakening. This goes away after around 2-3 hours of being awake (though the fatigue I mentioned earlier in the post still persists).
  • Brain fog and memory problems - both of these are much better than they were in the past and aren't nearly as much of an issue anymore

Current medications/dosages:

  • Vyvanse 70mg 1x daily (for fatigue and cognitive symptoms)
  • Cymbalta 30mg 1x daily (to help balance ANS)
  • Coreg 3.25mg 2x daily (to help balance ANS) - contributes significantly to fatigue, trying to solve this with doctor at the moment

Past medications:

  • Elavil/Amitriptyline HCL 25mg 1x daily (to help balance ANS) - also used this 2x daily at one point to help counter stimulant anxiety, around this time my POTS symptoms were the best, but I do not know if it was related to this medication or not.
  • Adderall (for fatigue and cognitive symptoms) - several different dosages. This medication worked quite well but I switched to Vyvanse due to excessive anxiety.
  • Ritalin (for fatigue and cognitive symptoms) - several different dosages. This medication was not very effective, it was too weak to touch my fatigue.

Some relevant info: On my last ANS test (I don't have the results of it with me, but I remember this particular piece of data) I had a 0.5 on sympathetic dominance for my baseline. I figured I'd mention this in case it gave anyone a better idea of what I'm dealing with.

I very much appreciate any info, advice, or recommendations you can give me. I'd especially love advice for dealing with/relieving the fatigue. Thanks!

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Hi there, abc. Welcome to DINET!

Have you been checked for fibromyalgia? Some of the symptoms you mentioned made me think of an article I read a while back. Brain fog (or Fibro fog), muscle pain and weakness, insomnia and sleep issues, extreme fatigue. Here are the articles in case you are interested: http://fibromyalgia.com/index.php/article/item/35-dysautonomia-in-fibromyalgia-just-what-is-that-funny-feeling-i-have/35-dysautonomia-in-fibromyalgia-just-what-is-that-funny-feeling-i-have , http://www.ncbi.nlm.nih.gov/pubmed/19007537 , http://www.webmd.com/fibromyalgia/understanding-fibromyalgia-symptoms

I'm not sure what you meant when you shared this, would you mind explaining a bit more? "On my last ANS test (I don't have the results of it with me, but I remember this particular piece of data) I had a 0.5 on sympathetic dominance for my baseline"

Sorry to hear that your going through a hard time with the fatigue, amongst your other symptoms. I hope that things improve for you soon. Sarah

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Hi there, abc. Welcome to DINET!

Have you been checked for fibromyalgia? Some of the symptoms you mentioned made me think of an article I read a while back. Brain fog (or Fibro fog), muscle pain and weakness, insomnia and sleep issues, extreme fatigue. Here are the articles in case you are interested: http://fibromyalgia.com/index.php/article/item/35-dysautonomia-in-fibromyalgia-just-what-is-that-funny-feeling-i-have/35-dysautonomia-in-fibromyalgia-just-what-is-that-funny-feeling-i-have , http://www.ncbi.nlm.nih.gov/pubmed/19007537 , http://www.webmd.com/fibromyalgia/understanding-fibromyalgia-symptoms

I'm not sure what you meant when you shared this, would you mind explaining a bit more? "On my last ANS test (I don't have the results of it with me, but I remember this particular piece of data) I had a 0.5 on sympathetic dominance for my baseline"

Sorry to hear that your going through a hard time with the fatigue, amongst your other symptoms. I hope that things improve for you soon. Sarah

Thanks! I'll check out those articles.

When I shared that stat from my most recent Autonomic Nervous System test, it was just in case anyone here had a good knowledge of ANS tests and what normal results should look like.

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I've actually never heard of that before..sympathetic dominance. My best guess is that it would be your sympathetic nervous system dominating your parasympathetic nervous system possibly? Maybe someone here can chime in if they have info on this. Sorry I couldn't help!

Actually it's my parasympathetic nervous system dominating my sympathetic nervous system. That's why it's 0.5 sympathetic/parasympathetic dominance.

No problem, thanks for trying!

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oops, sorry. Here comes my brain fog, lol!

It sounds like you've at least got doctors who are completing the ans testing and trying new medications with you, which is a positive. I know you mentioned you are having issues with coreg that you are working through, have you tried any other alpha betas yet? I know lebatalol has been a popular choice.

I've always been a bit fearful of the stimulants because of sleep issues that I have had. Do you think they have affected your sleep patterns at all?

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oops that's what I meant, sorry. Here comes my brain fog, lol!

It sounds like you've at least got doctors who are completing the ans testing and trying new medications with you, which is a positive. I know you mentioned you are having issues with coreg that you are working through, have you tried any other alpha betas yet? I know lebatalol has been a popular choice.

I've always been a bit fearful of the stimulants because of sleep issues that I have had. Do you think they have affected your sleep patterns at all?

Thanks, I'll ask my doctor about lebatalol.

Yeah, stimulants definitely effect my sleep patterns but it's worth it. Better to have some energy and less sleep, than no energy and slightly more sleep.

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