Jump to content

All Activity

This stream auto-updates

  1. Today
  2. Yeah, I'm starting to suspect that the greater mess of symptoms do revolve around blood sugar.. I found this post on Phoenix Rising talking about glycemic index, ended up putting their theory to the test: https://forums.phoenixrising.me/threads/diet-carbs-blood-sugar-energy-from-food.29631/#post-452731 I was feeling like garbage today, and by this evening I decided it was likely due to not having enough carbs the past couple days.. so, not a fan of feeling like the walking dead, and the only thing I had on hand that I thought was a safe enough carb option was a little bag of some chocolate covered pretzels.. I had some chicken broth, seasalt water, and ate a few chicken tenders for dinner and then ate 4 of the little pretzels (½ serving, 14 grams).. oooh boy, two hours later that surge in heart rate lasted for at least half an hour 😳 Haven't had one of those episodes in over a month. The glycemic index database I consulted beforehand tried to warn me that they had a high glycemic index and load, but I thought, it's just 4 little chocolate covered pretzels, how problematic could it be? Crazy..seemed like even my blood pressure went up from it if the readings were accurate (the two monitors were close in readings so I think it must've). Wish I knew why it lasts so long and why it also takes so long for heart rate to fully come back down after the episode is over, it almost always happens right as I'm getting wound down for bed so it shaves hours off my rest 😩
  3. How are you doing now? I feel like Effexor 37.5mg did this to me I’m really upset but my mri is normal
  4. Yesterday
  5. Last week
  6. If you're specifically looking for more info or for people with dysautonomia who've tried it, you could also maybe try digging around on forums like HealingWell or CureZone or PhoenixRising (the forum for HealthRising), I've found that the members on those three in particular are not shy about trialing things and reporting back on them, and there tends to be a lot of crossover when it comes to conditions like dysautonomia, ME/CFS, and Lyme and co-infections, so there'd probably be at last some valuable insights about it on one of those forums. DINET as a forum respectfully has less collective enthusiasm for going 'guinea pig' with treatment ideas, compared to some of the other sites out there where members of the chronic illness community will get an idea and then twenty minutes later they're comfortable with ordering whatever supplement online and then posting updates about starting it the same week, etc. I've noticed PhoenixRising in particular tends to have some pretty well-documented accounts of folks' personal experiences trialing just about any ME/CFS treatment that's out there being talked about.
  7. Hi, I just came across this thread and burst into tears. I was diagnosed with hsp at 11 and around then my what I now understand as POTS symptoms started. I am now 22 and fighting for a pots diagnosis but am not taken seriously by my gp. It has made me so emotional to know that there are others who had HSP as a child who have now been diagnosed with POTS and has made me feel sane again. Thank you!!
  8. Did either of you happen to try the clinic? Did you find that they knew what they were talking about and able to help?
  9. https://www.healthrising.org/blog/2024/03/24/voracious-brains-inflammation-chronic-fatigue-syndrome-conference/
  10. Thanks for the reply! Glad I've found someone who's going through a similar situation! I'm seeing my cardiologist tomorrow and will mention it to her again and see what she says. My resting heartrate is usually 100-110 but can get as high as 150-160 so that's why I think I have IST, I used to think it was due to POTS but my cardiologist said she doesn't think I have it, but I haven't had a proper tilt table test so I'm not sure if I could still have it or not.
  11. I always notice a correlation between tachycardia, narrow pulse pressure and high diastolic. That reading pictured looks exactly like many of mine. I don't know about the impact of mitral valve prolapse but in my case the high HR goes with the other two most of the time. Have you learned about the cause of your tachycardia?
  12. Hi, im a 14 year old female and for awhile I have been having consistently high dialostic blood pressure. I'm diagnosed with mitral valve prolapse, and possible innapropriate sinus tachycardia. Could these conditions have anything to do with the high BP? Today my reading was 115/95 about an hour after I woke up, and I've realized that my pulse pressure is apparently low. My systolic number is 99% of the time normal but there has been a few times of it being 130+, while my dialostic is usually 85-95. Is there anything that causes low pulse pressure and should i be concerned? Thanks
  13. @Sea otterI tried using a wedge pillow and for me it was very problematic to use and lost plenty of sleep using (two of them side by side). I kept working my way off the wedge pillows and had to kept adjusting my way back on them. i ended up buying a body pillow to help keep myself positioned up on the wedges. over time my lower back started hurting. i have to assume i was putting pressure on the spine as it is the point where it was bending for the elevation..
  14. I know this is individual but I was wondering on what kind of pillow are you sleeping? I had thin anatomic pillow for a long time but since POTS I feel like my body is longing for something higher. I have tried a lot of pillows but didn't find anything yet. I just kinda put thin pillow on my anatomic one and form it like wedge pillow and feel better sleeping on that but my neck is not satisfied. 😊 I was thinking to try wedge pillow.
  15. Hi babis? Where in Germany can one get this and can one get testing for aag in Germany as well? BR, Olof
  16. I took phentermine temporarily and not only did I have massive flare ups of my tachycardia , palpitations, shortness of breath, and fatigue, I also had dry mouth and constipation. I did gain half the weight I lost back after stopping the medication. I would never do that again. It’s just not worth it for me.
  17. No, that’s methamphetamine. I have placed a link to a book about Methylene Blue on the first page of that thread.
  18. A well-earned congratulations, @Sarah Tee! I really hope this is a helpful step toward improving things for you. It is all so resonant for me, and inspiring too. I have developed what I am sure is intracranial hypertension alternating with a cranial leak of CSF fluid. I am confident that it is stenosis or impingement of my internal jugular veins, blocking the outflow of CSF. But of course you go to a doctor and tell them you have it all figured out? You ask for the tests that will either prove or disprove it all? No. Not likely. So I am in the early stages of trying to cajole and nudge various doctors into ordering the tests I need. Anyway--this is about celebrating that you got yours after loads of money spent and yards and yards of patience and strategic craftiness! We look forward to hearing what the tests show.
  19. Although not good to be ill, it would be great if you could get a definitive diagnosis with positive test results to back things up. Hoping you don't have too long to wait and the testing is successful (? not sure on correct adjective here, but you know what I mean)
  20. Beyond something i would even consider.....
  21. Isn't that what Walter White made? The pharmacist in that thread sounds a loud warning.
  22. I have been having these nightly body vibrations for almost two months now. Waking up at night vibrating. Has anyone got an actual diagnosis what this really is? My bloodwork was good, only a bit high on hemoglobin.
  23. @Sarah Tee I’m so happy for you that you are finally going to be able to get this testing! Congratulations for sticking with it and advocating for yourself. It shouldn’t be such an accomplishment, but I know it is. I’ll be really interested to hear about the results, whenever it happens.
  24. I haven’t seen a dedicated thread for Methylene Blue. I wonder if anyone on this forum trialed it. Info about MB can be found via the link below. Poiscenter forum Methylene Blue thread
  25. @Sarah TeeGreat job with being persistent advocating for your care. I really hope the test will give you the answers that you have been looking for a long time. Please post back as to your progress and results. we are pulling for you!
  26. Folks, it’s finally happening. After two years of suggesting, cajoling, massaging, entreating and pestering my specialist to consider OCHOS and then to get me tested, he has finally made arrangements for me to have a transcranial Doppler ultrasound. The hospital that has the TCD set-up doesn’t have a tilt table (or can’t get the two together in one place?) so I’ll be doing a NASA lean test while being zapped with ultrasound. Also, for reasons I cannot fathom, as my response to medication rules out hypocapnia, I am to have my end-tidal CO2 measured. He says he wants to “diagnose me properly”, whatever that means. It has been six months since I took vasodilators, felt better and knew it had to be OCHOS. Six months of pestering, driving two hours and paying out AU$300 per appointment, reading everything Dr Novak has written on the topic, watching ultrasound technician videos, buying lottery tickets so I could fly to Boston to see Dr Novak, and worrying myself to distraction over getting this test. I’m already on the treatment for OCHOS (although it hasn’t been smooth sailing), but I need this test as proof, to have somethjng inarguable in my records, and to apply for government support if needed. It will be happening in the near future, no date yet, and I have to stop all medication for a week beforehand. Not looking forward to that! I don’t know what I will do if this test doesn’t show anything. I believe my hypothesis of OCHOS is correct, nothing else fits the evidence, I’ve studied this for two years, but the proof of the pudding will be in the ultrasound. Will report back when it’s all over! Hope you are all going okay and sorry I haven’t been visiting or posting lately. Sarah
  1. Load more activity
×
×
  • Create New...