Jump to content
Search In
  • More options...
Find results that contain...
Find results in...


  • Content Count

  • Joined

  • Last visited

Community Reputation

0 Neutral

About Sushi

  • Rank
    Advanced Member

Contact Methods

  • Website URL
  • ICQ

Profile Information

  • Gender
  • Location
    New Mexico

Recent Profile Visitors

1,931 profile views
  1. All over the counter pain remedies have some dangers. You are aware of the concerns with aspirin but Tylenol (acetaminophen) is tough on the liver and all too many have died from liver failure after taking too much or mixing it with alcohol or other liver-heavy medications. I know this doesn’t help much and headaches can make life very difficult—I know this from my own king experience with them. One thing recently has given me surprising relief—Mestinon. Though I started it for help with PEM (the dreadful post exertional symptoms), it has also cleared up my headaches which is a great boon!
  2. I used to get ectopics, then I developed Afib, which meant an antiarrythmic (flecainide) so I rarely get them anymore. Since you wouldn’t want to take an antiarrythmic unless you had something more serious than ectopics, there are supplements that help many. I am on a couple of Afib forums and most find that keeping potassium at about 4.5 prevents ectopics. This would mean keeping your other electrolytes in balance with potassium. The easiest way to supplement potassium is food and low sodium V8 (they use potassium instead of salt) or coconut water are good sources. Others find that l-taurine helps. https://www.ncbi.nlm.nih.gov/pubmed/16797868 Good luck.
  3. I also take a low dose of clonazepam for sleep and it doesn’t seem to interfere though I have been taking it for so long that I am probably habituated to it and don’t get the full effect.
  4. It is hard to describe clinically what this feels like. There is an empty feeling in the chest and just a lot of amorphous feelings (not psychological) of being in a critical physical state. The change is totally clear when it passes. Can anyone describe it better? In any case a small dose of Indica gets me out of it. A physician friend has the same experience and guesses that the THC calms the CNS.
  5. The Indica strain of cannabis is calming for most—it is the Sativa strain that can be stimulating. I have a medical cannabis card so it is legal for me, and I find that a very small dose of Indica (THC) is the most effective treatment for acute post exertional symptoms. I take it as an edible (which allows precise dosing) or as a tincture. The type of symptoms it works best for (for me) are the “am I going to die?” type that I sometimes get after too much exertion. It also helps with sleep for me.
  6. @Anne77 Hi Anne, have you looked into being checked over by an electrophysiologist (a cardiologist who specializes in heart rhythms)? I ask because they would probably give you a monitor to wear for a few weeks to discover exactly the tachycardia is. An EP would probably be most qualified to treat it. It would be important to know whether your tachycardia is in a normal rhythm or something like Afib. I have Afib so it on my mind and important to treat.
  7. That is an awful story and a caution for those considering Systrom’s testing. He uses interventional cardiologists to place the catheters but it is still an invasive procedure, no matter how skilled the doctor. I don’t think that this was my issue though as I had been given a lot of IV heparin and its levels were checked every half hour. I also restarted my regular Eliquis the next day plus daily aspirin for three months until tissue grows over the MitraClip that was placed during the procedure. The Eliquis is because I have Afib. I suspect that my pain was from irritation as I have hEDS and my blood vessels are fragile. How did they apply pressure on your radial artery? I had an inflatable bracelet and they reduced the pressure in it slowly for about a half an hour. I never had pain at the insertion site though. As far as the Mestinon, I seem to be okay with my 22 mg dose now, but will have to increase the dose soon. It does seem to reduce PEM though.
  8. That is great—please keep us posted! Wow, what a long wait! He will probably want you to do invasive exercise testing. Just a note: this involves at least one arterial catheter and I’ve recently, on two occasions, had to have a catheter in my radial artery (wrist) and both times pain developed about a week later. All I can guess is that, with EDS, my blood vessels are more fragile and reacted to having a catheter inserted. My doctor didn’t have an answer though. I am up to about 22 mg twice a day but get side-effects every time I raise the dose.
  9. I did have gastro issues with it but found that starting with micro dosing and then using micro titration minimized it and now I am not getting gastro issues though it takes a lot of discipline not to move the dose up too fast. The question remaining is what the effect will be when I finally get up to a therapeutic dose.
  10. Dr. Systrom (principal investigator on this study) has prescribed Mestinon to about 300 patients with good results in dealing with symptoms. I am currently trying it but it is taking time to titrate the dose up to therapeutic levels as Mestinon has gastro side-effects for many. So far though I do feel that my crashes from exceeding my energy envelope are milder. Is anyone else trying this?
  11. Wondering if this applies only to POTS or if the neurally mediated hypotension group have this too. For those of us with NMH, it is sometimes frustrating that the research seems to focus only on POTS.
  12. I live at about 6000 ft (high desert, dry) having moved here from sea level. I have not noticed any BP changes (I am NMH) but have noticed a lowering of oxygen levels. Functionally this climate is better for me because it is arid but I’d guess the response to altitude is going to be individual. When I’ve been in Santa Fe it hasn’t bothered me but when I was I the high Himalayas I felt really awful, though that was much higher.
  13. I add more Himalayan pink salt to my daily rehydration mix and it doesn’t bother me. I wasn’t sure that salt was helping me until a cardiologist told me to go on a low salt diet (for a condition that would normally be appropriate for. ) It was a disaster and he agreed that I should continue with an extra salt diet.
  14. https://www.thelily.com/a-chronic-illness-upended-my-life-im-still-trying-to-find-a-new-normal/
  15. @p8d The main symptom I get from too high vagal tone is orthostatic intolerance and the clonidine made that much worse as well as making me extremely tired. Hope that clarifies it.
  • Create New...