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Everything posted by p8d

  1. I was just prescribed LDN for inflammatory arthritis/pain/migraines/autoimmune disease and dysautonomia (autoantibodies to alpha a-1 receptors). I likely have a low level of MCAS but not officially diagnosed with it. I am wondering if anyone has any advice on starting/side effects of LDN? I am starting with 1mg daily and increasing to up to 4mg over several weeks if needed. I am not on Facebook and know to expect vivid dreams at first but what else? TIA.
  2. I have standing orders for PRN IV fluids from my neurologist and when I showed up at an urgent care clinic to get them the PA flat out refused to give them to me. He knew nothing about dysautonomia and said that the risk of infection was too great. This was after 5 days of diarrhea and I weighed 88 pounds. I was hospitalized a week later. If we have the orders they should not second guess our specialists! After that experience I simply won’t call for paramedics or go to an ER unless I am in complete fear for my life.
  3. I can’t do any type of breathing exercises except for maybe two breaths or a few minutes without getting very symptomatic. Mindfulness meditation, no way—I get tachy and anxiety and I have no idea what my BP does. I have a HRV device that you breathe to a Mandela and I do really well for about 3-5 minutes then all h*ell breaks loose, not only in HRV but how I feel so it’s definitely physiological because I can see it in the device. I think for some of us this causes sympathetic overdrive symptoms. I tend to do better lying down or sitting in my recliner and distracting myself with a book or cu
  4. Oh @PistolI am sorry that you are flaring. I also get weakness when I flare badly enough. I have been flaring lately, not just dys but also my autoimmune disease and have had a lot of weakness, joint pain etc. I think it’s partly the weather that’s doing it. Hang in there. Sending good thoughts your way.
  5. I should probably add that once I became eligible for Medicare (disabled) getting meds approved by the PBM was much easier. I assume that’s because Medicare pays for much of it.
  6. I have used such studies, especially double blind ones successfully to get my pharmacy benefits manager to cover drugs, I think this one the first time I was on it. My neurologist’s office is great at supporting treatments and justifying them which really helps. I tried it again recently but went off of it because it made my palpitations much worse so like everything with us it helps some but not others. I wonder if it’s lowering norepi and I am already on an alpha 2 blocker the combination was too much? Thank you for posting this.
  7. @dancerI believe that in the UK you can rent Parasym to try it out before buying. As far as I know no prescription is required.
  8. Thank you for posting this. I found the article and the DI conference presentations very interesting and hopeful. I was going to get a Parasym device https://www.parasym.co/parasym-device-transcutaneous-vagus-nerve-stimulation.html the next time my husband went to the UK (they don’t ship to the US) but covid hit 2 weeks before his trip. I did buy this in the US https://vagus.net/ but it only stays on for 15 minutes at a time and you can’t control output much and it irritates my skin. It might help a bit but I can’t wear it long enough to really know. I do know there has been discussion on here
  9. I am so sorry that you went through this and are now dealing with a severe flare. How frightening for all of you. I sincerely hope that you recover from the flare as quickly as possible. My sincere thanks for telling us about your experience.
  10. Hi all. I know all about doing ortho vitals (immediately on standing, after 1,3,5,10 minutes after standing) and have a great dysautonomia team of Drs and NPs but this is such a basic question I thought I would ask here. How long after sitting should we take them? I have read 5 minutes for healthy folks but my BP drops 10-20 points between sitting for 5 minutes and 10 minutes. I like the numbers after 10 minutes much more ;^) so I tend to use those. I tend to have hypertension. TIA.
  11. I have taken this a couple of times and it definitely helps the tachycardia to a degree. I have to be really well hydrated though and like everything else it only helps while sitting and for about 20 minutes walking around after that all h@ll breaks loose again including tachycardia/sweating/have to sit this second etc. I am currently on this and other meds, alpha and beta blocker and trying to determine which one is causing tachycardia about an hour after I take them so am cutting them out one by one over several weeks. I wish I could say it was life changing but it isn’t. I noticed no increa
  12. @MTRJ75Thank you for posting this. It is a great article and video.
  13. I found this on galantidine and dysautonomia https://www.rarediseasesnetwork.org/cms/autonomic/6111 but it’s just a call for participants in a study. It does explain what they are using it for. Please post your experience with it.
  14. @ScoutI am sorry about the flare. I have hyper POTS and OH and have been on clonidine, methyldopa, carvedilol and guanfacine ER which Pistol mentioned. Clonidine worked very well to lower my BP BUT It caused hypertensive rebound into crisis territory and the doses of the patches were either too little or too much. I really liked how I felt on methyldopa and a former Vanderbilt Dr now in Canada recommends it but it’s not available in the states anymore and it didn’t lower my BP enough. I now take guanfacine ER and carvediolol (beta and alpha blocker) which works very well and in fact I am inten
  15. I am sorry that your daughter is suffering through this illness now after doing well before. I have hyper POTS and after trying every sleeping med the only thing that helps me is extremely low dose mitrazipine. I take 1/4 of a 15mg tablet which is the lowest dose available. It’s an interesting drug because at higher doses it’s an old school treatment for depression but at low doses it acts an antihistamine and is used to treat insomnia in the elderly (I think). It’s not addictive. I know I feel absolutely dreadful without decent sleep. In me it raises my BP if I take too much but I have extrem
  16. I am the person @Pistol mentioned in her post. I developed post viral dysautonomia and the first specialist I sought out was a rheumatologist because my mom has 4 autoimmune diseases and her side of the family is rife with it. Of course every test was negative at that time but 18 months later on my third ANA I got positive results for both lupus and RA. I have the diagnosis of undifferentiated connective tissue disease and was put on hydroxychloroquine at that time. My first caution is that this medication is EXTREMELY hard on the digestive tract. I started with a quarter tablet once a day and
  17. Thanks for the replies. Like you @MTRJ75I have to deal with my dogs first thing but only take one med right away and don’t feed the dogs or myself for a couple of hours. Some of my meds have to be taken with food and if I eat first thing that drops my BP kicking off the SNS I need 2 mugs of very weak tea before I attempt anything much. @KiminOrlandoI definitely get delayed fatigue from exercise and have some minor mast cell reactions. I definitely react to noise, people, thinking hard etc. The delay makes it difficult to identify the cause if we ever can!
  18. Does anyone have delayed SNS symptoms? I mean after being upright for a period of time and feeling relatively ok but getting the symptoms after sitting down for a few minutes? Every morning I wake up, have some water and wait 5-10 minutes then get up and move around for about 10 minutes (I can’t stand still), occasionally sitting briefly and then when I sit down with my tea about 10 minutes later I get a hot flash (my first clue that the SNS has kicked into overdrive). Nothing else happens because I am sitting. I have an elevated HR while up and about. I just am wondering if this happens to an
  19. I don’t have baroreflex failure but my symptoms seem to correlate with being somewhere on a spectrum of it. I have supine hypertension, orthostatic hypotension and any “stress” good or bad, something as simple as a phone call, sets my BP soaring in spite of being on guanfacine (alpha blocker) and diagnosed with hyper POTS. Clonidine made the hypertension much worse due to the known side effect of rebound hypertension. I posted on your other post about weaning from it. If I have a very quiet day the orthostatic hypotension is worse (40-50 points systolic) with attendant symptoms, dizziness, tre
  20. I had to stop it last year due to hypertensive rebound into crisis territory. It is recommended to first stop beta blockers if you are on one and I spent 2 weeks slowly lowering the dose, a quarter of a tablet at a time. I was miserable-tachy, tremulous, hot flashes, palpitations etc but didn’t suffer from everything you are describing. It was apparently, according to the pharmacist very important to stop the beta blocker first. Be very careful of the hypertensive rebound.
  21. I think it should definitely help. It’s an independent, medical assessment of what you are capable of doing. I am 100% certain my form was similar and I was approved first try. From what I know the judges put a lot of credence in the medical records and assessment. I assume that you saw this? https://vimeo.com/434576980
  22. Thanks @Pistol! I suspect I have some form of that or partial form of it but don’t have the diagnosis. That would also explain my extreme reaction to fluids.
  23. I have this too. I do take an alpha blocker for hyper POTS but it doesn’t seem to stop this reaction to everything. I can’t stand repetitive sounds, repetitive movements (husband fidgeting and touching me), loud noises or quickly moving images on tv or movies. Car rides are very difficult. It’s like my brain can’t handle the information coming in so quickly. Some of it is better than when I was very bad but I still suffer once something has set my sympathetic nervous system off.
  24. @Pistol. Great article, thanks for posting. @Scout I too have serious BP spikes with anything that “stresses” my body. Concentrating on something, phone calls, emotional upsets, Dr appointments (even virtual) etc. etc. lead to very high BP but my HR goes down. I honestly don’t know how you tell if you have dysautonomia (I am diagnosed with hyper POTS) or baroreflex issues. Are baroreflex issues simply a form of dysautonomia or is it it’s own thing or is dys a baroreflex issue? I don’t have baroreflex failure because my body does respond to meds to control HR but my stress reaction is really ex
  25. Many, many of us develop full blown dysautonomia after a viral illness and subsequently flare after another one. Request that your Dr does a full set of orthostatic vitals, supine 10 minutes check BP/HR, check again on immediate standing, again after 2, 5, 10 minutes while standing completely still. You can do this at home and document your vitals and symptoms. Just stop if you feel faint. The majority of Drs don’t know about dysautonomia so show up with information from the main page on this site. Most of us see specialists in neurology and/or electrophysiology (cardiology). Request a referra
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