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bamagirl

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About bamagirl

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    Advanced Member
  • Birthday 07/26/1973

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    tawhite2526
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  • Gender
    Female
  • Location
    Atlanta, GA

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  1. Does anyone else seem to have flares with this crap? Mine include burning feet, burning tongue, severe vertigo, anxiety and feeling of sensory overload, joint pain, tachycardia then bradycardia, blurred vision, major fatigue. Seems to happen all at once and then I'm bedridden until it passes. It lasts about 2 months. The worst part is the feeling that my nervous system is about to explode. I take Vistaril and it helps some. Anyone else go through this and if so what helps? Sending hugs to everyone!
  2. I have felt more terrible lately and I keep getting these adrenaline surges that cause my heart rate to go from 52 to 160 for a few seconds, then back down to normal. This happened 4 times in a row last night with a few pvc's before it happened. When it isn't happening my bp is 95/60 and my hr is 52. I feel terrible!!! If I stand, my bp goes up and my heart rate goes up just a little. I really think there are other things causing this. Anyone else have these episodes? I can't take a bblocker because my hr & bp is so low in between surges.
  3. During these adrenaline surges, I get pre-spell symptoms. First, I get very flushed and a sunburn feeling. Then I get a very tired sleepy feeling, then my vision starts to get very sensitive to light and I get overstimulated and everything makes me jump, like the phone ringing or someone sneezing. Then I try to sleep and I can't. My mind races and it literally feels like I took speed or something. Next I start getting lots of pvc's and my muscles get weak and tired. Finally, I get a full feeling either in my stomach or neck and then BOOM!! My heart races like crazy!! It goes to about 150-180 for a minute or two and then sometimes it will go down for a minute and then it goes up again. During that time, I can't move and my hands go numb. Afterwards, my whole body trembles and my teeth chatter but I am not cold. My blood pressure goes up a little during these spells but not much. After these spells, I am wrecked for about 3 or 4 months and bedridden. During those times in bed I will have more little adrenaline episodes kind of like the big one but not as severe. These little spells may happens 3 times a day, once a day every day or 3 times a week. I don't know if I will ever stop having these horrible spells. Does anyone else have spells like this. If so, what helps?
  4. No, but I'm going to ask for one at the doc today.Thank you-
  5. Sunfish, You are an inspiration to me and I'm sure-many others. I truly believe with your attitude that you WILL get better in some time. I will read your story and send out a prayer to you every night. Take care and I hope you have a good day.
  6. For those diagnosed with progressive dysautonomia or nerve damage, how and what tests determined that? And if so, is it slowly progressive or fairly quick? What is the absolute worst case scenario? I ask because I have dysautonomia with small fiber neuropathy. I have nerve damage in my feet. I don't faint, and all of my autonomic reflex tests are normal except for no sweating on my feet. My main problem is adrenaline surges over and over, migraines(regular and newly ocular), and very low bp and feeling "drunk" 24 hours a day. I wonder since I have nerve damage in my feet that my dysautonomia is progressive. Any information helps. Thanks!!!
  7. Got it. Good luck with your tests and let us know how it goes.
  8. How were you diagnosed? What tests were done and what results gave you a true diagnosis? I am wondering if that is what I have, but I don't know how they test exactly. How do the docs know if our autonomic problems will progress and deteriorate with time?
  9. The only one I know of in OH is Dr. Blair Grubb. He is an Electrophysiologist (heart rhythm doc). I hope this helps.
  10. How many of you have the ocular migraines? I have had regular migraines for 17 years and since June of this year I am having ocular migraines. They are increasing from once a month to twice a week. I have had an MRI and my eyes checked, all normal. This is keeping my housebound more than usual. For those that do, what helps?
  11. Hello all, Does anyone else get an aura before a bad pots hole? Mine are like this- 1. get very tired 2. get a cool/burning sensation all over 3. vision very drunk/sensitive 4. startle easily 5. left arm and hand gets 'pins and needles' 6. can't sleep, feel very hyper and hear things in the night that are not there, like people talking, water running. 7. severe nausea 8. migraines 9. then I get the big surge, like i'll be sitting or lying down and then all of the sudden boom, boom, boom, my heart rate goes up to 150-175 for a minute, then it will go up again. This will go on day after day for about two months and I am bedridden. Does anyone else get this, especially the supine tachy spells because I want to push my pots doc that something else could be causing this. Thanks all-
  12. WOW! That is a long procedure!!How is your dad's a-fibs now?
  13. Does anyone else have this? I have always had sinus tachy, but over the past few months I have had PVC's and PAC's and just recently a-fib. I was wondering if anyone else had the same thing and if your ep doc recommended ablation for the arrythmias. Thanks for the input.
  14. Yes, girl- I have all that and about a million more symptoms that come and go. You will find most of us have those POTS "holes" that we go in and out of all the time. Hang in there and know you are not alone. I wish you a better day tomorrow. Amber
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