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p8d

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  1. 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.
  2. 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 increase in energy or other than cardiac effects.
  3. @MTRJ75Thank you for posting this. It is a great article and video.
  4. 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.
  5. @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 intentionally over medicated to prevent supine hypertension, it’s the only things that have helped that. I am pretty sure that I have baroreflex issues and whilst over medicated with big OH drops on standing I can control those to some extent with fluid bolus before standing which allows 15-20 minutes walking, I can’t stand still without symptoms for very long. I am now adding more salt and compression stockings for the OH .
  6. 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 extremely labile BP. For the high norepinephrine in my blood I take guanfacine ER. That is drug used for ADHD in children and also as a treatment for high blood pressure. It lowers BP so may not be appropriate for your daughter but worth investigating with your Dr. Does she wear compression hose, salt load? If you get a tilt table test request that they check her catecholemine levels including norepinephrine but this test has to be done supine for 10-30 minutes and then after being upright for 10-30 minutes. If they just take it seated it is not accurate and she won’t be treated for elevated norepinephrine *if* she has it. I hope that you have access to a knowledgeable Dr.
  7. 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 after months got to 200mg twice a day but still had diarrhea from it. My gastroenterologist gave me the ok to take a tiny dose of Imodium daily to counteract this and gain the benefit of the drug. It took 12+ months, definitely not 4-6 weeks, for me to see any benefit from it and another 2+ years to achieve significant relief from the malaise (flu like feeling), joint pain and swelling and fatigue. It did absolutely nothing for my blood pressure or heart rate so please don’t think it’s an all around panacea. I did eventually, after 18 months, feel tolerable enough to start physical therapy in person in a water treadmill and did PT until the pandemic stopped the in person visits. I have a neurologist and cardiologist who are ahead of the curve on this being autoimmune and I started subcutaneous IG (SCIG) 2 years ago and that has lead to more improvement in malaise, joint pain and swelling and fatigue. My joints are improved enough that the rheumatologist decreased the Plaquenil to 300mg/day last year which is what is recommended for maintenance for my weight. @DizzyGirlsthe dose is extremely important in my pain levels. When hydroxychloroquine became all the rage earlier this year and became difficult to get my dose was decreased to 200mg/day and the pain/swelling returned. My hypertension recently decreased and I cut my BP meds in half but whether this is the result of an increase in the dose of SCIG a couple of months beforehand or to stopping gabapentin I don’t know. Both those things happened at about the time the BP dropped. I do have SFN so it’s *possible* my nerves are growing back now that they aren’t being attacked by my immune system. I still have extremely labile blood pressure with orthostatic hypotension and supine hypertension and *anything* that causes “stress”, writing this or difficult emails, phone calls, a pleasant Zoom call with family all send my BP way up but so far not to crisis territory recently. Having said all this I still get fatigued easily just not as badly as before and I haven’t left the house except for lab work and a flu shot since March so it’s hard to really tell the impact of the increased dose yet. I can say I don’t feel like death every minute of every day anymore and I think Plaquenil, SCIG and exercise all have helped. As has mindset. I think every little thing adds up and I try everything I am offered. I did send my blood to Celltrend in Germany and tested positive for the alpha a-1 autoantibody. I am very encouraged by what @Pistol’s specialist said about this being autoimmune and am hopeful that they will identify which pieces of the innate immune system might be targeted with new or better drugs. Hopefully we are finally getting close to a real treatment for this! Thank you so very much for posting this @Pistol It offers real hope!
  8. 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!
  9. 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 anyone else or if maybe it isn’t my SNS?
  10. 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, tremulous, palpitations, hot flashes, shakey, have to sit down this second etc. There are other alpha blockers for hyper POTS including methyldopa (I quite liked that but they aren’t producing it in the US so you have to get it from Canada) and guanfacine (the ER formula causes almost no fatigue but immediate release does according to the clinical pharmacist I consult). My problem is getting the meds right. I have found by accident that a tiny dose of alprazolam (1/4 tablet) before a stressful activity keeps my BP around 140/80 sitting whereas extra beta blockers didn’t lower it as much. The problem is that I don’t always know when a stressful event will occur and you have to be very aware of the potential for addiction.
  11. 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.
  12. 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
  13. 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.
  14. 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.
  15. @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 exaggerated. I am on an alpha blocker and a beta blocker but alprazolam is what generally brings my BP down the fastest. It’s interesting that the article lists diazepam as a treatment for baroreflex issues. I had really bad rebound hypertension from clonidine and have not heard of the other suggested meds but will ask my new cardiologist about them next week.
  16. 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 referral to a *knowledgeable* specialist. There is a list of Drs also on the main page here and on Dysautonomia International’s website. In the mean time try fluid loading, oral rehydration salts with sodium and dextrose are good, and compression leggings. Keep exercising but limit it and don’t overdo it. Pacing is vital. You can search through this forum for additional information. Good luck.
  17. I had severe GERD like symptoms underwent all the tests GES (no), upper endoscopy (fine) but I had a gastroenterologist who was familiar with dysautonomia and diagnosed neuropathic pain. I was put on gabapentin and it worked. Mine was so bad I lost 25 pounds in a month and was hospitalized and put on TPN for 6 weeks.
  18. I never needed a hearing because I was approved upon application. Like @PistolI was honest in my answers. I couldn’t even fill out the form myself I was so ill. Your medical records are vital. You need to have everything documented by a Dr. This video should help https://vimeo.com/434576980 It’s from Dysautonomia International and is with 2 disability lawyers specifically about this in dysautonomia. It was filmed earlier this year so is current. Good luck and please let us know how it goes.
  19. I think I read that it can be from low blood volume which makes sense if you get it in the night. I get it from being upright too long and assume it’s blood pooling in my legs. I asked the cardiologist and they said they weren’t concerned about it.
  20. I agree with your cardiologist. The TTT was agony as was the EMG but my neuro trained at Mayo and ran all the tests they do. The QSART wasn’t a big deal I don’t think.
  21. Be aware of the known side effect of hypertensive rebound with clonidine. It worked great for about 6-8 hours for me but when it wore off, especially overnight my BP soared into crisis territory. They do make a 24 hour patch that should help if you can get the dose sorted out.
  22. I got a Welch Allyn a couple of years ago because that’s what my Dr’s office uses and it had a small cuff and it consistently read much higher than my Omron 10 and my Drs. I actually took both in to an appointment and the nurse checked them against both their electronic machine and manually and the Omron was definitely the closest to theirs.
  23. This is a bit old https://pubmed.ncbi.nlm.nih.gov/23931777/ but discusses testing of the autonomic nervous system including QSART which I think tests nerves, I was diagnosed with SFN because of a positive QSART and negative EMG.
  24. Thank you for posting this. Very interesting research. I recently had my renin, aldosterone and ang II tested. My renin was low but within range for standing and low for supine but they did the test seated so? It’s definitely low either way. Aldosterone was the same, low but within range and angII range is listed as <=52 and mine was 33. I haven’t yet been in contact with the endocrinologist about the results. Strangely, I control my BP with fluid intake so it somehow has to be connected to RAAS and/or baroreflex but I can’t figure it out. I definitely have autoimmune disease (UCTD) and tested positive for alpha a 1 adregenic antibodies through Celltrend. I am on SCIG and have been weaning down on my alpha blocker because after a dose increase of IG and/or stopping gabapentin my BP dropped from hypertensive crisis territory to usually <150/80s and sometimes even to normal but with serious OH of 20-50 points. So it’s certainly possible that the immunoglobulins are helping but I am overdosed on the guanfacine. Does any of this make sense? My brain is definitely still foggy!
  25. On the advice of my dysautonomia neurologist I have always gotten the flu shot every year since becoming ill. I had zero side effects this year or last year and previously I had fatigue the next day but that’s not unusual if I go anywhere. I was told just be sure it was preservative free. I am pretty sure I got a mild case of the flu 3 years ago but the shot likely saved it from becoming much worse with a really bad dys flare. Viruses are what set dys off in the first place and are known to exacerbate and cause flares so my logic is to do everything possible to avoid them.
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