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Everything posted by yogini

  1. Interesting. I think many of us couldnt get at home treatments bc we don't need the infusions all the time. It would be nice if saline became available as a recognized treatment to us. They think about $ but how about all the money and time in wasted drs appointments, medications, sick time etc when a little salt water would do the trick to get out of bad times. Rama, I would be interested in reading about the clinical trials. Is there info on the web?
  2. I don't think I am hypovolemic, but responded very well to saline the one time i had it. I think for those of us not hypovolemic, our bodies may mimic symptoms of hypovolemia. Would be AMAZING if they could figure out WHY it works so much better than drinking!
  3. Rama, are they testing saline on patients who don't respond to other treatments or patients in general? My knowledge is dated by several years, but last I heard it was quite controversial, because the risk of getting a port or other semi permanent way to get the infusions on a regular basis ran a high chance of sepsis. Doctors used to think it wasnt worth the risk except in the very worst cases, where one had PAF, etc. In fact several on the forum have had very scary encounters with sepsis. I thought you couldn't get ongoing saline through regular IV, because eventually you'd have no veins
  4. Have you been tested for celiac? some people feel better gluten free even if they don't have celiac. Maybe eating smaller, high protein meals more frequently would help. In general, a high carb diet is not good for POTS. I agree more research needs to be done in this area - not sure docs know much now.
  5. http://www.doctoroz.com/videos/montel-williams-daily-energy-boost-plan This seems like a good plan using some of these ideas!
  6. CC, maybe you want to talk with others on the forum with similar HRs. My TTT result was slightly higher than yours and I sometimes get the rates you mention, but there are lots of others who deal with your numbers, or higher, one very day. Although unusual for your doc they are not so atypical for POTS.
  7. That happened to me when I tried to get it during a flare. Drs don't understand its benefits and that its not the same as drinking. Also, most docs couldn't don't have it in their office. Getting it would mean going to the hospital in most cases, which costs $, making them more reluctant to give it. I hope u are able to find a way to get it!
  8. No, that is their wait time. If you schedule all of these appointments ahead of time, you can squeeze them into one trip. Otherwise they give you 1st available. They sometimes take standbys so you could try that or just do another trip in a few months where you get all these apps at once. Sorry you r dealing with this.
  9. Most drs can only deal with things they know about that fit in a neat little box. It takes a special doctor to break out of his/her usual routine and take time to learn about a rare condition like POTS. It may not be any comfort, but the way they treat us often reflects their own inability to acknowledge that they might not know something. I hope you can find another, better doctor in your area that can help you. To this one, good riddance!
  10. A bad diet, chemicals, polution etc., certainly don't help, but I don't think POTS is caused by diet. I remember reading that POTS (solidier's heart) existed during the Civil War, back when food used to be real! And the average American diet is atrocious, yet hardly anyone has POTS. In fact I think the people on this forum are way more diet conscious than the average person...other than those from yoga who are vegan, macrobiotic, etc. (many of whom have chronic health issues anyway). I am certain that most people will improve over time - believe it or not, that is already true, but stats wi
  11. BBs themselves would only cause weight maintenance or gain. If you are losing weight on them, it is likely the POTS itself or something else going on.
  12. Rama, You are much more into the specific scientific details than me. I think the reason people are so hard to treat is because they so often have one or more difficult coconditions going on. Something like mitochondrial disease, chiari or EDS for which there is no easy treatment, if any treatment. Severe allergies or sensitivity to meds. Asthma which affects oxygen intake. Gastroparesis limiting the ability to eat/drink, lowering their body weight/water retention and making their POTS worse. Autoimmune issues. There are a lot of treatments out there that doctors don't know about, if they ha
  13. I agree with Elfie. I think it depends on what is going on with your particular body. Although stimulants seem like the logical choice to improve fatigue and do so for normal people, that is not the first med drs would jump to prescribe for PoTS. I also think that, although extreme fatigue is a symptom of POTS, it can be improved. A lot. I am a living example of how fatigue dramatically improved with the right meds. If you are not comfy with sharing your details on the forum, perhaps you can Look for a dr that knows about other treatment options that can help you in lieu of, or in addition
  14. Issie, sorry if this is a stupid question. Is l-arginine the same thing as nitric oxide?
  15. I must admit I haven't kept up to speed on the POTS theories floating around the forum. However, I think someone mentioned that a nitric oxide deficiency could be involved. I just saw this add on CNN.com for a nitric oxide supplement. Has anyone tried this type of product? Just thought I'd ask... http://www.healthheadlines.com/article/content/fb_lgid=1956&fb_lpid=5814&fb_itid=9136188&pid=100&fb_itid2=8195&nid=27&aff_id=bridgeguypose_ii&sub_id=rad_srv_3
  16. Good luck, fingers xed, looking forward to the update.
  17. That is awesome. I know some people with chronic illnesses (like MS) have cured themselves through juicing. Not sure that would work for POTS since many of us benefit from salt. Rama is right. My stomach could not take that. Even if I have vegetable based soups for a couple of days that kills me. I have had moderate benefit fom greens pills and wheatgrass pills. I'm sure fresh veggies are much better.
  18. What a nice story about someone with POTS!
  19. Right after I got sick and complained of extreme /lightheadedness/dizziness, my primary doc referred me to a cardiologist. I cant remember whether if it was that cardio or a distant cousin that is a cardio who first suggested orthostatic hypotension as a diagnosis. From there I had a TTT and was diagnosed with POTS.
  20. I'll bet betas are contributing to your fatigue. What time of day are you taking them? Which beta and what is ur dose? What is ur BP? What is ur HR on betas? Sorry for all the Qs, but the way to figure out what is wrong is to figure out what is going on with ur body. It may help to talk to ur doc to see if you can switch to taking them at night and/or switching betas. They were great for me for tachy and I still take as needed, but For the most part my HR is managed with Paxil. No fatigue as a side effect. I would recommend Compression hose and salt - they can help keep ur BP up. Good luc
  21. So funny! We don't understand, our docs don't either... The blind leading the blind!
  22. Love, love love the reply, thanks! Which reminds me I need to send a thank you email to the Pittsburgh journalist for writing such an accurate article. Again I think most of us regulars here are informed/persevere but I have been on the forum many years. I have seen plenty of people who don't meet this description at all. There are probably many people that don't even check the Internet in the first place. I really dont think POTS is connected to any personality type. I think it is important to distinguish it as such - if it is related to emotions/behavior, it gives docs a reason to call it
  23. This topic has come up before and is controversial - see link below, for example. I am an A type peronality and can see that many of the regulars here probably are - we are the type of proactive people that do tons of research, are extremely knowledgeable and want to help ourselves. However, other types of posters pop up often enough too. I have seen this mentioned in literature/articles , but not really sure the description fits.
  24. What is your BP? Propel may not be enough sodium to increase your BP. Do you have sinus tachycardia or SVT? POTS is sinus tachycardia, but usually sinus oes not get that high. I hope you find good drs soon. Maybe try to find others on the forum that live in your area that can give you a recommendation.
  25. I don't think I have anything else other than POTS. So I am not sure I agree. I guess time will tell when we see what research uncovers.
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