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Everything posted by davecom

  1. Well it's been a year since my diagnosis and while I've in some ways made a bit of progress, I still deal with symptoms every day. I'm doing exercise, water, diet, etc. All the lifestyle modifications you can do pretty much and I'm wondering if sitting posture plays a role. I walk every 2 hours for a total of 120 minutes each day, most of it rather dizzy and uncomfortable. But during those 2 hour intervals I usually sit on a low chair (couch type of thing). I'm wondering if I should start spending more of my day sitting "upright" as in on a fairly high chair like an office chair/kitchen chair. When I do that my heart rates are higher of course, as you'd expect; but like with incorporating walking every day - I wonder if being more upright would be helpful for increasing blood volume. Anyone have experience with this topic?
  2. I'm sorry. Definitely call your regular POTS doctor and let them know. Try to stay calm and drink a lot of water/electrolytes.
  3. I like the optimistic interpretation by the journalist "Doctors at OU Health Sciences Center say they may develop better treatment or hopefully, find a cure within the next year." Surely the researchers didn't actually give that time frame for a cure....
  4. It's a great study. Tom Petty said the waiting is the hardest part, and that's how I feel about a study like this. How long until we have a blood test that we can all get for the antibodies? 1 year, 2 years? How long until this leads to widely applied treatments? 3 years, 5 years? The waiting is the hardest part.
  5. Yeah it's a pretty typical POTS symptom - I agree with kitt about the cause being blood to the brain (or lack thereof) - my neurologist said the same thing. Beta blockers made it much much worse for me by lowering heart rate and reducing therefore blood flow to the brain while orthostatic. Neurologist took me off of them even though they successfully lowered heart rate for this reason. It's important to remember that the tachycardia in POTS is actually a compensatory mechanism for blood pulling and therefore lack of blood to the brain. In some ways it's a good thing - otherwise you could pass out (and you might anyway).
  6. Most exciting research I've seen since I got sick... I hope it pans out.
  7. Even if they consider it to be a panic attack, at least they can do an echo/ekg for your piece of mind. Perhaps consider talking to the doctor who diagnosed you?
  8. Hi blobbydodger, There are a lot of people I see posting here and in other POTS forums who are concerned they might have POTS, and ultimately don't have the heart rate changes that are the hallmark of the syndrome. It sounds like you already have clearly seen that you do. It must be hard waiting for the appointment in April when you feel so bad. Perhaps you can try some of the non-medical interventions before then? - Increasing liquid intake to 2-3 liters/day - Increasing salt intake (assuming you don't have hypertension) - Trying out a low-carbohydrate diet - Starting a regular recumbent exercise program - Trying out compression stockings Good luck. I hope things improve.
  9. Absolutely should try to find your underlying cause. More than 50% of POTS cases are caused by an underlying small fiber neuropathy (Mayo's numbers). Have you seen a neurologist? More importantly, have you had a skin biopsy or QSAR?
  10. 50% of patients with POTS have an underlying autonomic neuropathy: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3538485/ A skin biopsy and/or QSAR should be standard protocol and hopefully will be in the future. It's a solid way of documenting a case with hard lab results for insurance/disability/treatment/etc.
  11. What a struggle you are going through. Truly the fight of your life. Reading through everything you wrote, I can see that you have a superb attitude. You're saying to these doctors "I'm willing to do whatever you want, just help me." And yet they still turn their backs. You're being super cooperative, you just want some answers. It does sound like your neurologist is a hack. I hope you can find some better care in Toledo. Keep fighting. I think the liquid food, like Ensure, is a very very good idea. Good luck. Sending positive thoughts your way.
  12. I've seen the articles on antiotensin and POTS before. The question is - why is yours low. This analysis doesn't answer that. It could be a feedback loop. With that said, I hope fludrocortisone works for you. Good luck, and keep us posted.
  13. http://www.dailymail.co.uk/health/article-2547543/Multiple-sclerosis-triggered-FOOD.html I predict similar discoveries of pathogens will eventually be made in dysautonomia/POTS. We know EBV can be a trigger; there must be other unknown pathogens too.
  14. Congrats on the improvement and thanks for posting the tips. They sound good.
  15. Thanks for bringing the good news. Keep it up. Congrats on normalcy... something many people never get a chance to truly appreciate.
  16. Thanks for the replies guys. All three of them are really helpful and encouraging. Thanks for taking the time to read and think about what's going on with me. I hope you guys are all right about this being a sign of recovery. They say in a lot of conditions, things tend to seem worse before they get better. Maybe this is a bit of that stage. I hope that's what was going on with you too, Andy. I like your theory about some nerve recovery and overcompensation regarding constriction. That's the kind of optimistic idea that I was forming myself. Relax, I'm glad you handled Disney okay. For me, recording and reading the numbers over the past year gives me some solace... something objective I can measure and see improvement in. I very rarely take my blood pressure unless I'm feeling poor, but I track the trends in the heart rate changes... it gives me hope as things very gradually improve over months. gjensen, you got it exactly right - numbers that seem in a sense to be trending better, but head wise actually feeling much worse. My blood both now and before are usually 10-20 both systolic and diastolic higher upright than they are sitting. Definitely not orthostatic hypotension usually. I'm seeing a doctor I haven't seen in many months next week who has some autonomic experience and my regular neurologist is not until March. I will probably make an appointment to see a cardiologist since I'm suddenly having all this bradycardia and feeling so unwell. Incidentally I'm taking my first week off exercise since I started 8 months ago. I'm still walking 110-120 minutes/day, but I'm taking a week off the bike/weights to see if it helps.
  17. Apologies for the long post... December was a tough month for me, with seeing standing heart rates back in the 130s occasionally (things had been in the low 100s for a couple months). 2014 rolled around and things seemed to turn the corner. Nothing really changed (still exercise biking 35 miles a week and doing some light leg weight lifting, still walking 120 minutes a day) in what I was doing. I'm not on any medications, just multivitamin, vitamin d, omega 3, and magnesium. Walking heart rates seemed to be gradually improving again and I was feeling a little better. I even managed to stand in one place for 5 minutes as a test at one point (with an empty stomach) and my heart rate stayed in the 80s. That was some really encouraging improvement - something I hadn't been able to do for the past year. Now the heart rates have continued to improve as January has worn on. When I first get up I'll generally see a jump to 100-112, but sometimes not even that high. I'm usually seeing walking heart rates in the 80s, and sometimes even the 70s. But I'm actually feeling much worse. I feel light headed and have a bit of a headache almost all of the time. I'm dizzy when walking again, something I haven't really been in many months. And yet I'm having the best heart rates I've had since I was hospital bed bound. What's been scary (to me, maybe it's not really scary) is that the lower walking heart rates have been accompanied by bradycardia at rest. I'm now regularly seeing my sitting heart rate in the 50s, sometimes even the low 50s. This has been accompanied by a raise in blood pressure. I'm at 120-130/70 now. I used to be at more like 110/70 a couple months ago. The only thing that changed is I started eating dairy again (and quite a bit of it since it seems tolerable and has helped me put some weight on) with lactose pills since I'm lactose intolerant. Could dairy really be raising my blood pressure so much in such a short period of time? I'll have to ask a doctor. In the meantime my head feels pretty bad, even sitting.
  18. I was on r-alpha-lipoid acid but I stopped it about a month ago. I don't take anything specifically for the neuropathy anymore. There was talk with the neurologist about trying l-carnatine, but I'm going to wait until things stabilize again before thinking about it. Generally I'm on a multi, magnesium, vitamin d, and Omega 3. Best wishes from the US.
  19. Hey Andy, I've been experiencing this the last couple of weeks too. I think it's all the exercise you and I have been doing. What's weird is how suddenly it started. I've been having headaches/feeling lightheaded at the same time. I read that sustained aerobic exercise can lower heart rates 5-25 bpm. Starting a couple weeks ago I started seeing resting heart rates in the 50s, after 8 months or so of exercise biking 32-34 miles a week + some leg weight lifting. Why did it suddenly kick in? Who knows. My walking heart rates have gone way down suddenly too, but its also accompanied by headaches/light headedness. I'm seeing a doctor next week... but the bradychardia scares me too. However, my blood pressure hasn't dropped down, so I do have to say that the exercise is a possibility. Why did it happen suddenly though? My only theory is that my peripheral neuropathy has gotten a little better and that accompanied with the results of the exercise takes my body some time to adjust too... Who knows, maybe it's the bad before the good.
  20. They really seem to be doing a lot of the cutting edge research. Looking forward to hearing what they tell you. Keep us posted.
  21. I hate to be cynical, Katybug, but how do you know the chiropractor wasn't partially the cause of some of these problems?
  22. Thanks for thoughtful post bunny. You have given me some ideas to think about.
  23. A recently approved topical cream for Rosacea, Mirvaso, works by constricting blood vessels in the face. Wouldn't it be interesting to spread that stuff all over your feet and ankles and see if it helped POTS? It's an alpha agonist like midodrine. http://www.mirvaso.com
  24. After I had been bed bound in the hospital for 2 weeks I started with a peddler and trying to walk for 5 minutes... then 10 minutes... etc. I would say get started with a n y t h i n g. The first step is often the hardest.
  25. The interesting thing is to do a repeat nerve biopsy and see for real how things have progressed. My neurologist is interested in doing one a year after the first one (back in the summer for me). If we had more data about repeat biopsies done at intervals (any papers out there?) we'd know a lot more about recovery.
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