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Amy Kann

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Everything posted by Amy Kann

  1. I had extreme panic. I often couldn’t see very well because I felt so disoriented. My hands would sweat and and I felt like something was about to kill me for many hours during the day. Honestly it was terrifying and the worst suffering I’ve ever had. Ive been told that no st panic attack last under 5 minutes but mine lasted for hours everyday. I started gabapentin at 100 mg at bedtime and after a week added 100 at lunchtime. Then slowly kept progressing until a found relief at 400 mg 3 times a day. Initially it made me tired and gave me a headache but I would pull back on the dosage until I felt better and then ramp up again. It was a process. I feel like myself on it. No panic-just me without panic. It doesn’t make me tired or have any negative symptoms. I think of it as a central nervous system soother. For me it’s been a life saver. I hope this information helps. I’m so sorry you have this awful issue.
  2. I have POTS and I have been seeing doctors who specialize in headaches for 6 months. They are guessing that I have a csf leak but I don’t have almost any of those symptoms but rather am the type who would get a csf leak. When the headaches started, I had intense headaches all day and night that started from tender points in my neck. One internist suggested that I had myofacial pain syndrome. I started pushing hard on these trigger points in my neck which helped and I began to have some control over the headaches. But now I have sudden sharp stabbing pain when I stand or sit up and sometimes when I bend over. It lasts less than a minute but I often fall down screaming in pain. I’ve learned that if I push on my carotid artery, I can make the head pain stop. I may have EDS -I’m hyper mobile and because of the RA, POTS and possible EDS, the docs think the best guess is a csf leak. But csf leaks last longer than a minute and also tend to worsen as the day goes on. Mine do not. They say maybe I have paradoxical symptoms -which seems illogical to me. Since I learned to push on my neck I can control the pain. It seems that either there is too much blood leaving my brain or too much going into my brain. Also I have developed pulsatile tinnitus. I had severe POTS 20 years ago which got better after two years of illness. Now it’s back though the headache doctor says I only have orthostatic hypotension. My heart rate is 35 points higher from laying to standing, so I believe the headache doc is wrong. I’ve asked if maybe my carotid artery could be the problem and they say no. Tests showed enlarged pituitary, normal MRI, normal X-ray, normal MRA and normal bloodwork. Next are cat scans in the next month or two. Very slow health care here. A spine doc thought I might have C1 and C2 vertebrae instability and so now I’m exercising to strengthen neck muscles but the headache docs think that I don’t have neck instability. Does any of this sound familiar to anyone? I’ve been reading about POTS and they say something about blood flow/sympathetic and parasympathetic sympathetic systems and vaso constriction and dilation. I wonder if the reason I have the stabbing pain is that the POTS is doing something to allow too much blood to flow In one direction or another. I can’t find any POTS doc in the Philadelphia area. I’d have to go to Hopkins which is two hours away and almost one full year to get an appointment. If anyone has any ideas about stabbing headaches and Pots, please write in. I’m having a hard time keeping my mood from tanking... it’s been so long without answers. Thank you for reading this and trying to help
  3. I had the adrenaline issue twenty years ago when my POTS was severe. It was the worst part of the illness. I went on gabapentin 400 mg 3 times a day. It has felt sort of like a central nervous system soother. It’s off label but it was a miracle cure for me. I built up super slowly-100 mg at a time. Too fast isn’t good. It stopped the adrenaline issue for me. I’ve never gone off it even though my POTS got better- because the adrenaline issue was so hideously unbearably life altering, that I’ve been afraid to risk having it return. I feel for you. I hope you continue to try ways to treat the adrenaline. I think there is an answer out there for you. All my best wishes. Amy
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