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Oh @roamer1 I feel for you. Insomnia has been really, really bad for me from day 1 of this and after trying every med and supplement available the only thing that gets me to sleep is mitrazipine. I take a quarter tablet. It raises my BP as does diphenhydramine and especially gabapentin. I take guanfacine to counteract my constantly high norepi and a beta blocker (coreg) in the evening and then the tiny dose of mitrazipine at bedtime to keep supine hypertension at bay. I also take guanfacine in the morning. My cardiologist prescribed carbidopa but someone here recorded bad results so I never tried it. This was before I realized that the bedtime gabapentin was causing hypertension >150 systolic. I also take Prosom 1mg at bedtime which also keeps the supine hypertension down. I will send you a pm too. I will be interested in seeing if this combination helps you.

The fludricortisone helps your body retain fluids to keep BP up and reduce OH. Keep an eye on your BP while starting it. Mine got very high on a quarter tablet. I, too, have hyper POTS.

@MTRJ75Yes, I was diagnosed with a biopsy along with an EMG to rule out large nerve fiber problems. I opted for for SCIG because of a history of migraines and was afraid of IVIG. Plus I can do SC at home. It is expensive but it is covered by Medicare (I am disabled) and I have prescription coverage through my husband’s insurance. I also have autoimmune disease (UCTD) and had positive results on the Celltrend panel (company is in Germany) which apparently helped convince the insurance to cover it. I believe that the companies that make it offer discounts if you have insurance coverage. Keep getting tested for AI disease, especially if it’s flaring. I was tested for it for 20 years about every 5 years and 3 times in 18 months after developing full blown dys before one random one came up positive. Treating that has helped me the most along with exercise but I couldn’t exercise until the severe fatigue let up just enough to exercise. It still took days to recover from exercise but all of the little things help.

I think I had that metallic taste for a few weeks when I started taking methyldopa but it went away. Maybe your dose is too high?

Thank you for posting these. I am not on Facebook which is sooooo good for my mental health but I miss seeing this type of research. I was diagnosed with SFN when I was diagnosed with dysautonomia. I also have autoimmune disease so this all ties in very well. It also explains why SCIG is helping some aspects for me. It’s nice to see the research making progress. Thanks again.

One of the times I was on it it was in short supply and my Dr wrote a paper prescription that I photographed and sent to a pharmacy in Canada. It was very easy.

@Sushi HBOT sounds interesting. Can you please post or PM me where you got it and cost? What do you expect it to help with? Any reason why high barometric pressure helps? I feel awful when it’s falling or low. Thanks.

Oh @Pistol I am so very sorry that this happened. I know the feeling all too well. Try to break the routine that helps even a tiny bit and all h#ll breaks loose. I blame the computer equipment! For me anything remotely stressful sends me into sympathetic overdrive and dealing with computer equipment is among the top of the list. That would set me back several days too so I am afraid that you are not alone. My neurologist said to me this week “my, your ANS is extremely sensitive” when describing things that help/hurt. I think for some of us that is unfortunately true. This is the place to vent so vent away! That in itself is helpful especially to people that actually understand. No matter how much we are loved no one else really gets it unless they live it. On the advice of my cardiologist I just bought a device called HeartMath Inner Balance https://www.heartmath.com/ that tracks heart rate variability through breathing. It’s pretty cool and remarkably relaxing. It helps by showing how to breathe and tracking HRV. I haven’t tried it under duress yet but will let you know if it helps. Might be worth a look? Take care and rest. You will get over this again and put the monster back under the bed . Hugs to you.

I think many of us have worse mornings because we are more dehydrated from not drinking overnight. I always am worse in the mornings. I have very labile BP but in general it’s lower in the morning. @Pistol is 100% correct, our ANS is extremely sensitive to just about everything. Even my neurologist said that to me the other day. I am extremely sensitive to fluid intake and stress. 16ounces of liquid can raise my BP 30 points for about an hour. One trick I was told to do is drink a glass of something before getting up in the morning and stay lying in bed for 15 minutes then get out of bed.

@RobinB my neurologist orders it and I was seeing a physical therapist. I see her virtually now for tweaks. It’s helped quite a bit except for mornings or if I am upright too long. I can now do things that were impossible at first but it’s taken a long, long time. You have to never stop.

I had the problem with patterns for several years and still get really dizzy in moving vehicles at greater than 35mpg. I also sway quite a lot if I stand still for any length of time. It has nothing to do with my eyes/ears, that’s all been extensively checked. I even had a brain MRI. One neurologist thinks it’s a pain free migraine and suggested topomax which I couldn’t tolerate. What has helped is 4 years of physical therapy for general strength and especially for proprioreception in the ankles/feet. Treating my underlying autoimmune disease has helps and I rarely stand still, I always move/walk. Fluid load helps somewhat but not the car issue.

I did basically the same thing as @cmep37 after experiencing similar symptoms to your wife. I have hyperadregenic POTS, OH and the autoimmune disease (mixed connective tissue disease). Basically that just means I show symptoms of several autoimmune diseases but not enough of any particular one for a firm diagnosis. At my worst, about 9 months after sudden onset, I weighed 85# and was completely debilitated, in the hospital for 5 days and fed through an IV for 6 weeks so I know how very bad it can be. I was told to get up every hour and lean against a wall, never stay in bed all day, even if it’s just going to the couch and exercise under the direction of PT advice. Getting up was pure h*ll, exercising was probably the hardest thing I have ever done. My husband would basically hold me upright and we would “dance” every night for 5 minutes to help retrain my body. Treating the MCTD with plaquenil (Very, very slowly titration up) was the first thing to help the incredible fatigue, knowing my limits and increasing exercise by seconds a week all helped. I used Modafinil for fatigue because Ritalin gave me tachycardia. I have tried 4 or 5 beta blockers, some non-specific ones increased fatigue but there’s now Corlanor which doesn’t lower BP but decreases HR. I tried pyridostigmine, midodrine (caused diarrhea) 3 alpha blockers (still take one). I started SCIG about 18 months ago in the US but had to prove to the insurance company that my dysautonomia was related to the autoimmune disease. I had the MCTD diagnosis but also sent my blood to Germany to Celltrend to look for specific autoantibodies related to POTS. One showed up and that helped persuade the insurance to cover the cost. It’s very expensive otherwise. I choose the subcutaneous route over IV because I get migraines easily. Mine comes from a company in the states, I don’t know how it works elsewhere. I am pretty sure you have to have autoimmune disease to qualify for it but I suspect the companies that make it offer rebates for out of pocket payers. The IG helps with fatigue, muscle pain, malaise. The IG, plaquenil, other drugs, knowing my limits—which are substantial, and exercise all do a little bit and every little bit helps with disease. What helps me the most is being bloody minded, vowing to never, ever get so sick again. I exercise most days, no matter how I feel, even if it’s only for a few minutes. I now weigh 120 pounds, have actual muscles (they are small but hey) and while still housebound I don’t pray to die every night. I have good and bad days and flares but in general I am at least mostly happy. Two books I found helpful are The Dysautonomia Project and for acceptance of this How to be Sick by Toni Bernhard. I sincerely hope that any of this is helpful. Feel free to PM me.

I had to have an order from my Dr so the lab would actually draw the blood. Finding a lab was a bit difficult but the local medical college did it and gave me back the tubes for shipping. They even got me a box for shipping it which was way above and beyond. I had to send it FedEx which was a disaster because no other company would send a bodily fluid. There are specific forms that 99% of the employees don’t know about but I have copes if you want them, just PM me. I was missing one of them and my blood got held for 1-2 days up when it arrived in Europe which might have messed the results although the company said it had not. I don’t know if Covid has changed anything about shipping but I wouldn’t be surprised if it has.

I was told a difference is completely normal but I don’t recall the specific numbers. I believe it has something to do with distance from the heart.

@Pistolyou might ask about tramadol for flares. I have taken that in the past without difficulties. At least until the hydroxychloroquine starts working.

@RecipeForDisasterwhich transvagal device do you use? If you can’t public ally say can you please send me a message? I am interested in one that’s only available in countries outside the US and uses an ear clip. Thanks. For me with my AI linked/caused dysautonomia I use SCIG. It helps. It’s not a panacea but every little thing helps. I also find a few minutes (5-10) of light aerobic exercise helps on the days I am rather (as opposed to terribly) fatigued helps. If I am terribly fatigued I take a rest day entirely.

@Pistol! I am glad that you are doing better. Whenever I start or stop just about any med I taper at about 2-3 times what’s recommended because I am so sensitive to everything. My Drs are all fine with this @KimOrlando is correct. Hydroxychloroquine helps a lot with my AI arthritis but it has to be taken daily, not just for flares and takes about 6+ months to start feeling the effects. It’s also nasty on the digestive system so I tapered up on that over months and even had to take a daily tiny dose of Imodium (with gastroenterologist’s permission) to tolerate it. Once I was on the final dose a few months I stopped that. You also have to have yearly eye exams, regular and Visual Field Test and blood work. It also helps with fatigue somewhat. I am glad that you are doing better. Hang in there!

I was told that I needed to stop alpha and betas to have this tested again. Alpha first and slowly then beta also slowly. I did that last year to switch betas and it was difficult to say the least. Apparently you always should stop alphas before betas. I believe that you need to be off both for a week or more for this test.

I was on this for 5 years and recently discovered it was raising my BP to super high levels for the last 3. I started it for neuropathic pain in my abdominal area (felt like the worst GERD ever) and that’s gone so I tapered off over 5 months. Perhaps it’s raising your BP just enough to ease the OH? It never did anything for my coat hanger pain. I am glad that it’s helping you, just keep an eye on your BP.

A couple of things: my dysautonomia neurologist told me that they see onset in women more frequently around menarche, pregnancy or birth and menopause and she’s been researching/treating for 20+ years, including at Mayo. I have discovered mine Is autoimmune and it hit 2 years after menopause so I was still in that age range. I was repeatedly tested for autoimmune diseases and on the third test in 18 months after sudden, post viral onset one came back positive. Treating that has helped but is no magic bullet (I take plaquenill and now SCIG). I also sent my blood to Celltrend in Germany for testing for autoantibodies and the alpha a-1 came back positive too. I am still housebound but if I limit my activity to what I know I can handle I don’t feel like death every minute of every day. Exercise! Even when you don’t want to. I weighed 85# and was completely deconditioned a couple of months after diagnosis with symptoms similar to what you describe. I started exercising (at physical therapy in a walking treadmill) at that point and now do aerobics (stationary bike, rowing machine and treadmill) 20-30 minutes 3-4 times/week with PT supervised strength training most other days. It definitely helps. Start and increase *extremely* slowly. I still only increase by 30 seconds a week and have to have 2 days off after aerobic or I really suffer with fatigue. I do strength training the other days but if my body is really fatigued I just take a rest day but never more than one. I refuse to get so deconditioned again. Strong muscles, especially in the legs help get blood back up to the heart and brain. Does it stop tachycardia or palpitations or brain fog? Absolutely not but it prevents me from getting so very, very ill and every little bit helps. If your PCP won’t refer you to a dys specialist find another one that will. I found a great PCP on the Dysautonomia International state web group. There a WONDERFUL neurologist in Chicago, Dr B listed here https://www.dinet.org/physicians/ who specializes in dys and will definitely help you. Maybe call for an appointment now for when you get PPO insurance, most specialists book 6-12 months out. If you can travel to southern Wisconsin let me know and I will give you my Drs names. I had very similar digestive issues and was even on TPN for 6 weeks because I had such pain when eating. I went gluten free and supplemented meals with pea protein shakes to add nutrition and calories. I now am eating pretty much everything except nightshades and dairy. It took a couple of years to add gluten. Yes, my life will never be what it was but when I couldn’t die, and I really wanted to, I vowed if exercise and perseverance were what I needed to do, be it testing/exercise/diet etc I would do it. I am very stubborn which helps! I still struggle with stuff every single day but I weigh 120 pounds, have fantastic Drs and when I live within my (very severe) limits I am generally happy.

I have an Omron device that I took to two visits with my dysautonomia neurologist to compare it to her digital one and had a 24 hour BP test because my BP was elevated (150-160/80-90s) supine or sitting consistently at home and at office visits. Arm position is critical. In my ortho vitals at the neuro office I rest my arm on the device at heart level when standing or sitting as I do at home. Because the readings between my monitor and all my Drs electronic monitors were similarly high we tried the manual one and then my Omron. Sitting they matched almost exactly. Ortho readings were off by similar amounts to her electronic device (10-30).. She said manual devices are more accurate. The 24 hour device is *extremly* tight and sensitive to body movement. If I was walking when it went off I always got an extremely high reading or an error. Otherwise it read much, much lower than my Omron (20-30 points), back into normal/mild HTN and even quite low in the morning (90s/70s). The only high readings that seemed credible was the 149/83 at the office when they set up and when out on a short walk while a bit upset. I did it on a very quiet day at home though. I have questioned the results with my cardiologist twice and he just said everyone’s BP fluctuates a lot and while it clearly documented hypertension when doing something “stressful” (reading something difficult, concentrating, phone calls etc), which is also well documented at every single Dr appointment for the past three years (I am home bound), that I can take an extra beta blocker or try carbidopa (haven’t been brave enough to do that yet) beforehand. He also said because my BP also goes down not to worry about it, it’s sustained hypertension that’s more concerning. After that I mostly just stopped checking at home unless I am changing meds or feeling awful which is clearly related to hypotension.

Interesting thread. I seem to be mostly the opposite but with very labile BP too. I am hyper POTS with supine hypertension and immediate orthostatic hypotension on standing which slowly rises for about 5 minutes then decreases again. My worst symptoms are when BP gets too low. @Pistol I am interested in what you said about high diastolic readings. Mine tends to be elevated mornings and sometime other times regardless of systolic (dehydration I think). I am starting to wonder about my RAAS and if I am over medicated with carvedilol and guanfacine causing recent orthostatic hypotension drops with lots of symptoms. Weather is definitely a factor but ours has been pretty mild (60-low70s) for several days with steady barometric pressure and low humidity so I don’t think it’s that. My problem is if I don’t take the doses of beta and alpha blockers the supine hypertension is >150/80 which is what my Drs want to avoid. Like others every tiny thing, talking on the phone, Dr visits, concentrating causes BP to elevate to 150+/85+. A new cardiologist said “permissive hypertension” is ok but not >150/85 but will cause problems in a couple of decades (I am 58). I had never heard that term before. Anybody else ever heard of that?

@Pistol is correct. She’s wise! On the advice of my dysautonomia neurologist I have found that drinking 8-16 ounces of water about 15 minutes before getting out of bed helps with morning dizziness and everything else that follows—tachycardia, shaking, tremulous etc. When I was at my worst I drank a liter of water and took a few salt capsules. The theory is that it increases the blood volume which you have lost overnight.

Do you know if you have hyper mobile joints? hEDS? When the joints are lax it forces the muscles to do the job of the tendons/ligaments and in me anyway it results in huge knots in my neck/shoulder muscles and pain. I suffer terribly with tension headaches that lead to migraines. I have been doing 3.5 years of physical therapy and part of that is strengthening my traps and other neck muscles to lessen the knots/stress. I do stretches daily too. The therapist gives me (or did pre Covid-19) massages and heat therapy which I do at home with a hand held massager and heating pads. She also does an occipital release, you will need to look that up. I just purchased a device to do this but haven’t used it yet. I also use a cold pack on my neck/shoulders after exercising my upper body which definitely gives me headaches. I have tried prescription muscle relaxers but most have side effects that are intolerable to me. I have found that pillows designed for neck pain help. There are a few different types of hats that you put ice packs into that really help when I get a migraine. One is called IceKap. That one has a cold pack that goes down your neck and around your head. I hope these ideas help.

Congratulations! That is amazing and you are one strong woman. I know that the pressure pressure from water helps the blood get back to the heart and that helps everything. I am awed that you could do the whole trip!