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Everything posted by kitt

  1. Hi All, This is a very comprehensive online book that was written by an extraordinary and compassionate NIH researcher/M.D. named Dr. David Goldstein. He is a rare researcher. He's not only dedicated his career to dysautonomia research but also sees select patients involved in NIH studies. He doesn't sit alone in an ivory tower...He has experience with patients. I found this book to be incredibly comprehensive. More comprehensive than any dysautonomia publication I'd read before. He has a newer version with hundreds of color images but it was sent to me via Dropbox and I don't know how to
  2. Mine goes 80 over 40ish but also goes 180 over whatever-ish. It's all relative. I also have bradycardia along with tachycardia. Am also hyperadrenergic. NE over 1500. I see Dr. Sandroni at Mayo in MN. Midodrine might help you. Good luck.
  3. Goschi, my response to Midodrine is much like yours or at least like yours in many ways. Are you experiencing any side effects that are constant? I'm taking 2.5 of Midodrine between 5 and 7 a.m. and it does nothing for my BP. I go back to bed. Between 9 and 10 I still can't get a BP reading. I take another 2.5 mg and a few hours later I'm at 60/40. Ironically that dose tends to last all day. I've read all about half life etc...But this is how it works on me. I've not been on it long but I'm noted by my doctor for side affects. My internist once said 'The only thing you get from meds is
  4. I have this pain also, and it's difficult. Mine is mostly in the mornings when my BP is lowest, but all day no matter how much I'm sweating (hyperadrenergic) I wrap something around my shoulders due to this pain. My husband says 'Why are we keeping the AC at 69 degrees if you're cold?' I'm not 'cold'...My shoulders hurt and are sensitive...It's almost comical in that there is such a dichotomy in my symptoms, signs and comfort. Good luck with this. Dysautonomia is a spectrum disease as are most autoimmune diseases. Coat hanger syndrome is the same way. You may be suffering in a way with t
  5. My BP is so low when I wake in the morning my BP machine can't get a reading. One 2.5 Midodrine does nothing despite laying flat after taking it. Taking a 2nd 2.5 tab will raise my BP to 60/40. After a few hours my BP will become 'normal' enough and I try not to take any for the rest of the day. That's a good day. My BP is labile and goes from very very low to very very high. Am both hypo and also hyper (Both systolic and diastolic) ...So my sympathetic nervous system is misfiring and causing a lot of 'out of the box' reactions with both heart rate and BP. I've tried every med under the
  6. I was first dx with pots when I was 55 but knew I'd had it for a few years. If it had only stayed the way it was then I'd be glad but it's deteriorated considerably. A recent Mayo visit showed I have not only pots but NCS, (another form of dysautonomia). Because of this my heart rate varies from 135 to 50. Both tachycardia and bradycardia. A 24 hour BP and heart rate monitor at Mayo showed that my BP is also labile. It can be extremely hyper and hypo. Diastolic as high as 180 and as low as 70. My mayo neurologist is a pots expert and researcher, and she has not been able to find a medicati
  7. Thanks Chaos, I mentioned I got mine at Walgreens, and only paid 4.00 for the box. (with insurance) What kind of side affects did you have? I haven't noticed any. Am starting Midodrine and that's kind of a weird drug, but no problems with the Gastrochrom. Best, K
  8. Janet, Thanks for this information about how often you take it! I really didn't get good instructions during the video visit with my doctor. Walgreens filled mine too, and without a problem. I use Walgreens for all my scripts and have found that if I ask they'll stock anything ahead of time that I'm going to continue to use. I didn't know that I was supposed to take 2 ampules at a time. That's good to know. Are you feeling better on it, and in what way? The doctor Theo Theopolis (wrong spelling) is all over the net with data on mast cells. He has videos too. Dr Klimas was going to set me
  9. Chaos, Did you read the paper I posted? My IGE is very elevated. How are you taking Gastrocrome? What form and how often?
  10. Hi Melanie, I'm sorry you're experiencing this but am so glad you saw an expert at Mayo. I think you're in good hands on that front. Hang in there, we don't know what the future holds and the next 'new thing' may be just right for you. One lady on this forum was very ill with pots and is now getting ready to run a marathon! Keep hoping and coping...Sounds like you're a tough gal, and I'm glad you're able to see the silver lining in each day. I'll be sending good thoughts your way. Best, K
  11. Best, K http://www.tufts.edu/~ttheoh01/mastcellsinflammation.pdf
  12. My pots neurologist at Mayo in MN recently prescribed liquid Cromolyn, (Brand name is Gastrocrom) for MCAS, common in in people with severe hyperadrenergic pots, (NE between 1000 and 2000). Wondering if anyone has tried it and what was your experience? It's been a good thing for me thus far and very easy to take...Squirt it into a small amount of water and it lessens MCAS. Thanks, K
  13. I said biorhythm but it's CIRCADIAN rhythm, not biorhythm! Am so sorry for making that error. I don't know what I was thinking. Best, K
  14. Before trying prescription meds have you had your catecholamines checked? Meaning a blood test done while standing to check your norepinephrine levels? Norepinephrine and sleep are intrinsically tied together. A sleep study may be of no value if your NE levels are very high (which would indicate you have hyperadrenergic pots). Hyperadrenergic pots includes having sleep disturbances accompanied by temp changes...Including sweating and waking suddenly from a deep sleep. Sigh...Am sorry you're experiencing this for whatever reason. A simple catecholamine blood test provides much more definit
  15. Foggy, I am very, very grateful to Mayo Clinic in MN and also the satellite Mayo in Florida. I had several surgeries at Mayo in MN and have been there many times and have also been a patient at the Florida Mayo clinic since it opened. One of the surgeries I had at Mayo MN could not and would not have been done successfully anywhere else. I can't begin to express my gratitude. Am also grateful for the care I received from Dr. Sandroni and the autonomic clinic at Mayo in MN and while I disagree with their view that hypervigilance is a part of pots, I respect the doctors there enormously. Ma
  16. Jackie, Oh about the hypervigilance! Here's by experience at Mayo discussing this topic. This Mayo article was posted last year on Dinet by Izzy and it is the best article I've found by far on pots. There is a long thread about it on Dinet. I studied the article carefully many times before my visit to Mayo MN. Jackie, When I was seen at Mayo MN earlier this year I asked Dr. Sandroni, (a major dysautonomia researcher there) about the use of the word 'hypervigilance' in that paper. I didn't ask about 'learned behavior' and she didn't mention it. I too was IRKED (your words) that hypervigila
  17. Zoloft is an SSRI. Wellbutrin is sometimes said to be both a dopamine reuptake inhibitor (DRI) and a norepinephrine reuptake inhibitor (NR), but in reality its DRI properties are so weak that it is basically an NRI. It isalso a nicotinic acetylcholine antagonist, which is responsible for its efficacy as a smoking cessation aid. Wellbutrin is often given in combination with an SSRI to restore libido and reverse emotional blunting caused by the SSRI. The combination of Zoloft and Wellbutrin was sometimes nicknamed "WellLoft" by psychiatrists because of their synergy. That's interesting. I looke
  18. Bellgirl, did you have any side affects with Wellbutrin? Is Zoloft in the same class as Wellbutrin, (I haven't researched it.) Doctors who treat CFS used to use antidepressants as immune modulators. Don't think that's still a common approach, but I found I didn't tolerate most of them but did tolerate Zoloft. It's been over a decade since I took it but I did tolerate it. Just curious about side affects of Wellbutrin, if any. DeGenesis, I understand your catecholamines were done via urine but for purposes of dysautonomia they're done via blood rather than urine. You may want to have the
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