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  2. I bought this in February and found that it didn’t help with my dysautonomia/POTS, though I also have a diagnosis of ME/CFS, cardiac preload failure and small fiber neuropathy (all confirmed by a workup and iCPET by David Systrom at Brigham & Women’s). Poor venous return is a major issue for me, at least according to Systrom, so I thought the Hummingbird might help but was wrong. I used it for about 3 weeks straight and I found it made leg muscle fatigue worse, not better. I am not aware of any doctor who specializes in POTS and autonomic dysfunction who is recommending the Hummingbird, though it is admittedly fairly new to the market. It is also quite expensive for what you get. It seems like it should sell at Bed, Bath & Beyond for $40.
  3. No, I don't get that. Being upright is consistently awful, lying down is always lovely! B x
  4. Exact same issue I'm going through right now. I've been having constant inflammation and infections. I went to a nephrologist. My protein is at 30 and I have very high creatinine at the upper limit. My urine creatinine. He told me my blood creatinine is okay my urine creatinine is very high. He told me I need to see a GI doctor about my liver. He said all the creatinine coming out in my urine means my kidneys are doing their job removing the creatinine. There should not be that much creatinine in the urine, and that comes from the liver. The liver is supposed to keep it in your body. I went to a GI doctor all of my liver enzymes were perfect. Except one that said I might have fatty liver possible Nash. Nash has the chronic inflammation of the liver which would be a chronic condition that could cause pots. And pots symptoms of low blood pressure irregular heart rate circulatory problems. I had a fibroscan done at a hepatologist office. I have over 67% fatty liver, and Nash. Many times if you have a liver problem it affects your kidneys, I kept insisting I had a kidney problem it's coming from the liver. Now I just recently found out my gallbladder is not working at all when I had a HIDA scan test done. So I have some severe medical issues going on that are either making my pots symptoms worse or caused my pots. But if you have a lot of creatinine in your urine and your blood creatinine is okay you need to look into your liver. Your liver could be causing problems with your kidneys.
  5. When all the most recent POTS research seems to be showing structural or autoimmune causes, a company where half the staff are psychologists doesn't fill me with much confidence.
  6. That would be a cause and effect. A flare is when you do your normal everday routine and for some reason it flares up for days/months etc
  7. During the 2nd surgery that was done to correct the failed fusion and problems with the 1st surgery, they used chronOs synthetic bone protein with success. For similar reasons as the ones you state, they felt it was a much better option than trying to harvest my bone. It is an individual recommendation and it is great to have options. I wish that all surgeons discussed the options with patients prior to making decisions. You are clearly educating yourself and that will give you the best outcome possible. Best of luck.
  8. I don't have "flare ups", never have. In a way it sounds nice as I like the idea of it being less bad at other times rather than consistent. I don't tolerate heat well since I became ill, but I don't think that is what is being described here? @Pistol I hope you feel better soon. B xxx
  9. I'm so sorry to hear that Derek, by all accounts it seems to be routine & the norm for a first application in the US, so please don't see it as anything other than just a part of the process. Keep up your determination & efforts, I wish you the very best with your next round. B xxx
  10. POTS in teens is recognized to remit spontaneously more often than not. If you have the money to go there without it causing financial hardship then by all means, but I would not advocate anyone spending the kind of money this facility charges if it is going to compromise their own or family's financial security or lead to debts. There are other experiences online that you can read about this center, Ilana Jacqueline at letsfeelbetter and Jenna at parasympathy have both been there. I have personally spoken to a staff member there and corresponded with them directly about what is offered, and there is certainly no secret magic bullet that only they know about. As for my own illness we are now highly certain of a structural cause, either a spinal cerebrospinal fluid leak caused by a combination of weak dura and the very forceful valsalva that immediately precipitated my illness, or craniocervical instability. Both are treated with surgery, not biofeedback or counselling. B xxx
  11. And thank you so much for taking the time to share it.! The surgeon I would be using typically harvests rib for the grafts but I would definitely ask about pelvic. They also use cadaveric donor bone and chronOs synthetic bone mineral protein either instead of, or as well as, bone grafts harvested from the patient so it seems to be tailored to individual needs. Having been unable to do weight bearing exercise for 5 years & being low BMI & largely housebound so not exposed to sunlight my own bones may be a little osteopenic, so I would need to consider the best option for the graft. I really appreciate your insight! B xxx
  12. I have stage 3 CKD, eGFR 48-50. I’ve had it for 13 years. I’ve repeatedly asked my docs at Vandy and my nephrologist and they says POTS “will not cause” CKD. I think that there is correlation between the vascular issues with POTS, as well as migraine and CKD, but not causation. Meds can cause kidney function decline, as well as high BP, and low BP “kidney insult,” but it has to be really low as can happen with acute kidney injury. Chronic dehydration can hit the kidneys too. NSAIDs will definitely cause CKD. Get your labs from as far back as you can, and keep track of them. The trend over time is more important than single values. Serum Creatinine is an indirect marker of kidney function via muscle mass, BUN (blood urea nitrogen) is more of a protein intake marker, but will be elevated with dehydration. Protein in your urine can have multiple causes as well.
  13. I definately have Diabetes. But the Autonomic syptoms have had all my life and they are getting worse. i have gone on a No Sugar No Grain diet and that is helping my bloodsugar and I hope to be off of insulin by the end of the year.
  14. Yesterday
  15. Here in Alabama has been hot. I wish the highs were in the low 50's. That'll feel like bliss to me.
  16. Its cold here in quebec. Last week i had a temperature of 5 degrees celcius in the morning. I imagine you have AC at your home?
  17. I live in west TN. Oct 1st the high is predicted to be 98 degrees. We are breaking records where i live. I am very heat intolerant and looking for some relief but its nowhere in sight.
  18. It's an antihistamine and like Benadryl, Mirtazapine makes me jerk and sometimes have full body convulsions. I love the other effects but the jerking is too awful.
  19. I have been on very low dose Gabapentin/Neurontin for the last few months but have cut that in half. It is not supposed to cause kidney failure but if you have CKD it can become toxic to you if you take a large dose. It is excreted thru kidneys.
  20. So frustrating. At least its not the 18th century anymore, so we have meds. I hope you get better.
  21. @DizzyPopcornmy list of meds is horrifying but yes, they help quite a bit. It has taken 4.5 years to find a decent combination of meds that help but it’s always changing. Seasons, allergies, life all contribute to flares and sometimes things just stop working.
  22. I had a rear molar, second from the back , not a wisdom tooth, removed last year. It was out in seconds! I was stunned. The oral surgeon knew about POTS because, as he said, he works with a lot of young women. I had laughing gas and non-epinephrine (absolutely critical for those of us with hyper POTS) anesthetic. I also had two root canals this summer after the preparation for a bridge caused severe pain. With a great endodontist those were ok too. She did have to do a procedure where she drilled into the bone to do the anesthesic but it worked great, she just had to repeat it more often because of the shorter time it works compared to the epinephrine type. So, find a really good oral surgeon, maybe ask on a dys Facebook page for your state and ask other people but don’t be too afraid. Definitely ask the dentist for a referral and call and ask to speak with them before any surgery.
  23. @KiminOrlandoyou don’t need a Dr’s order for the Celltrend test but it’s a huge hassle getting the blood to Germany, at least it was for me. Having said that, my neurologist used my positive for alpha a-1 (I think) antibodies along with my autoimmune disease (UCTD) to convince my insurance (Medicare) and pharmacy benefit manager to cover SCIG (my choice over IV). She also used it to convince my rheumatologist, who, like yours, was resistant, to agree to it. The SCIG is making a real difference in many ways, especially the fatigue, malaise, overstimulation and joint pain. It isn’t doing a lot yet for the BP/HR but the nerves take a long time to regrow and I have been on it for about 10 months now. Medicare covers it for me. It’s definitely worth the effort and with Dr Grubb’s latest research showing 89% of POTS patients have the alpha a-1 antibody I think for many of us it is autoimmune. Using this research should, in theory, help the case.
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