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Everything posted by Sushi

  1. There are many different types of dysautonomia other than POTS, though that experience could have been some sort of orthostatic intolerance. Did it happen more than once? Getting up suddenly after lying down for quite a while (particularly in a stressful situation) can cause light headedness even if you don’t have dysautonomia.
  2. I have found Polar monitors with chest straps to be good...but all HR monitors average a few beats together so you are not going to get a beat by beat display although it is in real time. This doesn’t really matter unless you are trying to monitor an arrhythmia.
  3. @Friedbrain I can empathize as my HR used to be concerningly low with resting HR of about 47 and a sleeping rate of about 43. I also occasionally dipped into the 30s. If you feel that your cardiologist doesn’t give the help you need, seeking an electrophysiologist (they specialize in heart rhythms) might also be something to consider. I also stayed up for a whole night when my HR was in the 30s. I would move around every few minutes to raise my HR. My electrophysiologist did give me a pacemaker and I love the thing as it has eliminated some troublesome symptoms for me and setting the base rate at 70 has made my OI better. Best wishes and let us know what the monitor shows.
  4. I had an echo that showed severe mitral valve regurgitation. My local EP thought I’d need open heart surgery and I didn’t want to do that locally as I’m in a small city, so I went to one of the best valve centers in the country, echo disk in hand. The cardiothoracic surgeon I saw didn’t think the quality of my echo was good enough so he had another one done that would more clearly show what he was interested in. Based on the new echo and his physical exam he recommended a less invasive procedure which is what I ultimately had. So, for me a less than perfect echo led to a much easier procedure. Today I had another echo to check that my new valve fix was still tip top. My EP had been called out to emergency surgery so I told the echo tech that I wasn’t leaving until she told me the basics as I wasn’t willing to wait for my rescheduled appointment with my EP. The tech understood and told me the basics—mitral fix still good, etc. So that’s my “poor echo” story!
  5. Have your EKGs been evaluated for arrhythmias like Afib or aflutter or ectopics? At least there are treatments for these. Best wishes!
  6. Good question! In my first years of realizing that there was something really wrong with my health, things I heard and read pointed towards dysautonomia and this was my first diagnosis. I discovered that it was often associated with mitral valve prolapse but only learned later that the connection was probably Ehlers-Danlos syndrome. Later, through discussions with my autonomic specialist, I realized the connection with SEID, more commonly known as ME/CFS. Now I regard ME/CFS as my primary diagnosis with Ehlers-Danlos as a co-morbid diagnosis and dysautonomia as a very common symptom of ME/CFS (though you can have dysautonomia by itself). I don’t have POTS but rather neurally mediated hypotension. PEM is a primary symptom for me and makes strict pacing essential. I don’t have fibromyalgia now though I did in my first years of symptoms. So none of this crystal clear but all of it seems to be related. Mast cell activation also plays a part for many. As I see it POTS is the body’s attempt to work around orthostatic intolerance as is NMH and PEM seems to be the result all these metabolic screw-ups. Brain fog may be partly due to low blood volume and hypoprofusion of the brain. All this is super complex and so far has mostly stumped researchers though there is a lot of interesting research in progress. I am hopeful but we may have to wait a few years for more effective treatments. Researchers have figured out some of it but not enough for us to have more than symptomatic treatments available right now.
  7. This struck me as I have had really excellent TTT testing from another autonomic specialist and he explained that the data from a TTT took a long time to analyze as every change I BP, HR, EKG, respiration and oxygen had to be correlated by time stamps to understand what might be causing or affecting what, and then more time to work up a treatment plan.. I don’t see how he could have done this adequately in the time available. Yes, it is very disappointing to invest so much time, energy, money and hope and then not be treated with respect and care. I hope some other approach opens up for you with a different doctor.
  8. I recently had general anesthesia and also had a very knowledgeable anesthesiologist on my side. I started getting IV fluids as soon as I checked in and even better, they recently changed the guideline of “nothing by mouth after midnight” and I was allowed to drink fluids up to one or two hours before I arrived at the hospital, so I was not dehydrated. Yes, it takes some time to get over the anesthesia but there have been no long-term negative effects. Best wishes!
  9. Yes, scary and annoying that it hasn’t been caught on a holster. Have you heard about the Kardia device? https://store.alivecor.com/products/kardiamobile?ds_rl=1263291&gclid=Cj0KCQjwi7DtBRCLARIsAGCJWBqT7CaDrpD4qN7KdZUbz2xkxf9JR8R-LaD8lLP4Ctt9eFzYJmGAKosaAilmEALw_wcB&gclsrc=aw.ds It is an FDA approved tiny device that takes an EKG with the help of a smart phone or tablet. You can then email the PDF to your cardiologist. The trick would be catching the episode but I keep it close by to be able to record any cardiac events. An implanted monitor would record the event faster but the Kardia is easier to get. When I have sent strips to my, EP she has replied within minutes. Inability to catch and record events is frustrating!
  10. 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!
  11. 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.
  12. 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.
  13. 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.
  14. 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.
  15. @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.
  16. 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.
  17. 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.
  18. 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.
  19. 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?
  20. 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.
  21. 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.
  22. 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.
  23. https://www.thelily.com/a-chronic-illness-upended-my-life-im-still-trying-to-find-a-new-normal/
  24. @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.
  25. Clonidine was truly awful for me and I stuck with it for a month. In my case, I’m an outlier too too high vagal tone—I need to increase my sympathetic tone to stay on my feet. Anyone have ideas on how to do this? Strattera worked like a dream for some years but I no longer tolerate it. Midodrine spikes my BP even at 1/4 of the lowest tablet made (it is metabolized through CYP2D6 and I have a SNP there). I’d guess that Mestinon would affect me like clonidine. Has it been true for others that Mestinon and Clonidine have a similar effect.
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