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fighting4health

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About fighting4health

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    Advanced Member
  • Birthday 01/14/1981

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  • Gender
    Female
  • Location
    California

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  1. I'm on Verapamil. I tried several other "blockers" of many sorts, maybe 7 or 8 different types, but this is the only one that I've been able to stay on for long term at a moderate dose. It has helped a lot for symptoms like fatigue, Raynaud's, small fiber neuropathy, blood pooling, POTS, migraines, and others. It's not a cure, but it has helped me a lot. I did get some side effects of light headed and dizziness with an increased dose (which happened with all the other blockers that I tried too), but I'm on an anti-seizure medication that took care of those side effects. Verapamil isn't for everyone, but I'm happy with it.
  2. Same here. I've had the EMG a couple times and everything was normal, but doctors think I have small fiber neuropathy. It's a good test since you get the results on the spot.
  3. My neurologist put me on Veropamil, a calcium channel blocker, 2 weeks ago as a migraine preventative. I didn't expect much from the new drug because low doses of anything ending in "blocker" have instantly made me very sick. So far I am amazed at how well it is working. My Raynaud's is better, my fatigue is going away, my mood is better and even the neuropathy has improved. The other day I scrubbed my feet in the bath without having a terrible tickling sensation. I haven't been able to touch my feet without cringing for over 2 years until now. Every symptom that I can think of has improved at least a little. I know I may develop side effects to Veropamil in the future and have to discontinue it, but I'm enjoying it now!
  4. I have always yawned a lot. Sometimes I get really long yawns a few times a minute that just don't stop. Once I was on a date and the guy thought I wasn't interested because I couldn't stop yawning. I read on the forum that this means I need more oxygen, but why do I continue to yawn then? I don't notice any triggers that bring it on. I don't get extra symptoms when I yawn, it's just annoying that I unintentionally offend people with it.
  5. I have a friend that is in his 60s that has Marfan's. He is super active and hikes over 1000 miles every year. His doctor says he can do all the cardio he wants, but no anaerobic stuff. He has had to have the lens on one eye replaced a couple times and he has a heart condition that his cardiologist keeps checking up on. I know Marfan's can have different degrees of severity, but it's possible to have Marfan's and do well.
  6. I'm so in! I love this idea. I am interested in losing a bit of weight. My ideal is 130 and right now I'm 150. I range a lot because my appetite has a mind of its own. This time last year I was 120 because my appetite took a vacation. I'm more interested in putting on some muscle and getting my lungs back into shape. I'm able to do 150 minutes minimum a week. How does this work? Are we going to check in once a week or something like that?
  7. 1. Sometimes my pupils stay the same and sometimes they constrict. I've never noticed them dilating when I'm symptomatic. 2. I get a little dizzy and pressure in my head, but I hardly even notice it. 3. My hand felt electrical pulses from the second I put it over the bed. When I pulled my hand up it was numb and white with no notice of temperature change.
  8. I'm sure there's an unwritten nap in between each one. (1.5 naps, 2.5 naps, etc.)
  9. I have Raynaud's too. I get it mostly in my feet, and my left foot is way worse. I have also had that elbow pain where you just want to cut off your arm. I was diagnosed with small fiber neuropathy which explained a lot the the pain I had in addition to the Raynaud's pain. For me Tylenol works better than Vicodin for it.
  10. I was told I don't have hyperadrenergic POTS, but my standing norepinephrine test was over 700. The lab paper did say that I was in the normal range so I don't know if it got overlooked because of that. I take Welbutrin (SNRI) and it seems to help my symptoms. A couple years ago I weaned myself off of Welbutrin by lowering the dose every 2 weeks. Each time I lowered it I had less fatigue, but then the fatigue would come back. Once I was completely off of it the fatigue came back and stayed. I'm back on it now. My doctor told me to take the drug in the morning so that I would sleep better, but I've found that I sleep much better when taking it right before bed. If I miss two or more days of Welbutrin I have really bad fatigue and I hobble around and have trouble getting the strength to do anything especially standing. If hyperadrenergic gives you an increase in norepinephrine wouldn't an SNRI make the levels even higher, or does it actually help regulate it? Has anyone else experienced similar reactions to an SNRI? Does this sound like hyperadrenergic? How is hyperadrenergic treated?
  11. Some therapists do phone sessions. Might be an option to consider.
  12. If you're able to I recommend trying another therapist. I saw a Licensed Marriage and Family Therapist (LMFT) 4 years ago when I went through similar life changes and she helped me a lot. I still see her now, just not nearly as often. It's helpful to talk to someone that specializes in relationships and the changes they go through. Just like M.D.s though, a good one can take a bit to find.
  13. Fatigue is one of my main problems. I got to a point where I would start to close my eyes when I was still walking and also dozing off at red lights while driving. I had a sleep study and everything came back normal. Sometimes they can find triggers or reasons for fatigue with sleep studies or certain blood workups. Sometimes they find nothing and it's POTS as the only cause. Hope you and your doctor can get you feeling better.
  14. I have small fiber neuropathy that causes those feelings. Sometimes I'll feel like a hair is stuck to my lip or finger, but it's just nerves acting up.
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