p8d

Mine has been elevated for a couple of years even after I stopped supplementing. My current and former PCP are not concerned. I guess because other tests that might indicate a problem fine.

Back in my “normal” days I would get heat rash when I went to the tropics which sounds somewhat like you describing. I got the diagnosis from my PCP and when I knew I was going to those places I would scrub with antibacterial soap, which I always hated because of resistant bacteria, for a month before my trip. Worked great.

That’s very interesting. Muscarinic receptors have been implicated in some POTS research as having antibodies blocking them (or something like that). If I am remembering correctly the Mayo autoimmune antibody screen looks at these among others. Celltrend also tests for these among others.

@TCP How does CBD help your nervous system? I tried LDN but the insomnia was too much. I just ordered some for my autoimmune disease. I am in the process of weaning off gabapentin, very, very slowly. I had been taking it for suspected neuropathy in my gastrointestinal tract for a couple of years. So far I am not having problems. I just want to cut back on as many meds as possible.

@Pistolwhat, us strange? Never 🤪. Thanks for letting me know it happens to you. I guess I assumed it happens to most of hyperdystos. I never really needed a reason to be reclusive but I have one now and I actually understand why!

Oh and exercise! Helps a lot including crushing fatigue.

If your feet go purple sitting that’s a pretty good sign you have pooling. Your Dr certainly must know if they have observed it and recommended stockings. They keep my BP up about 10-20 points which decreases my symptoms. When my BP gets too low I get just about every symptom, shakes, tremulous, hot/cold, dizzy, stumbly, tunnel vision, wrong words come out and more which I believe are from norepinephrine surges (I have hyper pots). I still am uncontrolled but swings are a bit better and every little thing helps. Weather changes, hot and cold, make everyday different but stockings, along with meds, careful fluid intake all help somewhat.

You should check with your dr on strength but it’s my understanding that you don’t need a prescription for any less than 30-40. I order mine through a local company that sells all sorts of compression items. She carries many brands and bills my insurance which pays for two pair a year. I got the device that helps get them on from a local pharmacy that fits and sells them. I could not get them on without it.

I wear one from RoadID, it’s for bike riders but you can get more information on one and they have add-on clips of the symbol for medical alert. I put another add on clip that says see wallet where I have more information. I also wear a necklace that has a big medical alert symbol and says see bracelet and wallet. There are some that are USBs that can carry medical records and others that link to a website where you upload your information but I am reluctant to put my personal medical history onto a commercial website. My bracelet says “autonomic dysfunction” and “ANS POTS, OH, tachy” plus DNR, two ICEs and allergies.

I wear thigh-high with feet, open toes in summer and closed in winter. My feet turn purple with standing and while showering which certainly indicates that I pool there. Open toes are somewhat cooler but any are extremely hot in summer. I like Juzo brand and you can get lots of colors and tie dyed ones. The ones I have seen that are footless are not 30-40mHgs so check your prescription for strength. It’s good to get fitted by someone who knows what they are doing. Some pharmacies do this and some places that specialize in compression garments too. There are also aids that help get them on, I highly recommend getting one.

The weather plays havoc with my body. Low BP high BP all in a couple of hours. My lowest BP was 74/52 (didn’t faint) before fluids and compression stockings one morning and by 11AM it was 200/99 with visitors. I saw my cardiologist and we switched up meds, significantly. I suspect come autumn we’ll switch them again. I also am incredibly fluid sensitive. I can raise or lower my BP by 20+ points slamming 8-16 ounces of fluids in about a half hour. For me, BP rises with any activity, even talking on the phone, are the norm thanks to hyper POTS. so I pre-treat with an alpha blocker. I don’t think it’s unusual at all for us to have these swings but do tell your Dr so you can get guidance in how to deal with it.

@Aspiringdoc checkout Celltrend Diagnostics for POTS specific autoimmune testing. It’s the only company in the world that tests commercially. It’s in Germany. Also keep testing ANA. I had my ANA tested many times over 30 years and 3 times in 18 months after POTS diagnosis before one came up positive.

I have a device that assists in getting them on. They really, really help me. They, along with fluids and salt, raise my BP about 20 points. The difference in about a half hour after I put them on is dramatic. The pharmacy I got my first pair from sold the metal device. I can post a picture of it if anyone is interested.

I started on a stationary bike along with at home PT strength training. After a year or so I stated with PT at a facility with a water treadmill plus increasing strength training there and at home with bands/free weights/balls. I still did the bike a couple of times a week. After another year I got a home rowing machine and started an upright treadmill at PT. I’m going on two years of PT and cannot recommend it highly enough. I am probably going to get an upright treadmill soon as I want to increase upright time which is still quite limited. I worked up from 3 minutes every other day on the bike simply because I wasn’t going back to how very ill I was again (84 pounds, TPN, severe malnutrition because I couldn’t eat). It was sheer bloody mindedness. I attribute much of my improvement, limited as it is, to exercise. Other good forms are swimming if you have someone with you. I can’t handle busy places at all and am home bound so swimming wasn’t for me but if I can manage aerobics 3-4 times per week and strength training 2 most weeks anyone can work up to it and beyond. I tailor exercise to activities and it’s taken awhile to learn to add complete rest days after Dr or PT appointments but you will learn what your body needs with time. Ask your Dr about the Levine POTS exercise program, mine is a modified version.

I had terrible insomnia for 18 or so months when I first got sick. Absolutely miserable. An ANS neurologist said that sleep was critical to feeling well enough to start an exercise program. I tried every drug/supplement and eventually found that Remeron/mitrazipine was/is the only thing that helps. PCP ordered it. I am crazy sensitive to many drugs and a small dose works. Clonidine for hyper POTS also helped but that diagnosis came later. Exercise is vital. I started exercise after 5 days in the hospital weighing 84 pounds for severe malnutrition/deconditioning with 3 minutes on a stationary bike and now have worked up 20-30 minutes 3-4 times per week and strength training 2 days. I definitely sleep better days I do aerobics and it helps with fatigue, really.

If you are prone to diarrhea be aware Milk of Magnesia and pretty much all magnesium can cause it. I was told maleate is the best salt for decreasing this side effect but I prefer to eat sunflower seeds.

Absolutely correct @WinterSown. I also have a great PCP, gastroenterologist, and gynecologist all familiar with dys. @TCP I completely understand the difficulty in the UK, my husband is English and I have had a few experiences with the NHS over the years. All pre POTS when I could travel but I keep up on news about it because my mother-in-law is quite elderly. She’s 95 and in better health than me. I am incredibly lucky and grateful to have two neurologists who specialize in dys in my city plus other specialists familiar with our special needs. I guess my take away from this discussion is that we all need to do whatever outreach we can to bring awareness.

I have a wonderful neurologist who specializes in dysautonomia and diagnosed and treats me including HR/BP initially. She referred me to an EP who also specializes when BP/HR got too crazy. The neurologist looks at the entire autonomic nervous system which is extremely helpful. A specialist in the field is worth their weight in gold.

I am post-menopausal and hormone replacement therapy caused my BP to go to crisis levels it got so high so I would think the pill could raise BP. Just monitor daily and for months.

Did the Dr say why? My autonomic specialist knows I take mitrazipine (same class but different somehow from amitriptyline) and prescribed lexapro. I haven’t started the lexapro yet. She prescribed lexapro because it’s helpful for some people.

Thanks so much for sharing this! I would love to see the English transliteration if you find it.

I’ll PM you.

Well, I started this thread and for me it actually wasn’t the betas but HRT. It just took me months to figure it out because I started the HRT about a month after I started the betas. Apparently HRT is known for raising BP and about a week after I stopped it, cold turkey, my BP started coming down. This poly-pharmacy game makes identifying what is causing what very difficult. Especially something like hormones that build slowly. I’m just glad that my husband called me fat (!) and I thought the HRT might be causing the weight gain and that made me go back and review my records of meds. Hubby was joking and I weigh 120# but have always been about 105. The lesson is keep detailed notes of new meds/therapies/supplements and hang on to them for much longer than you think you will need them! Not one of my Drs thought about this. I never thought that I would be happy to be called fat 🙃🙂

I was dumb luck too. I thought I had CFS, read a book on it and it suggested ANS dysfunction. I googled, found a specialist in my city, 6 month wait list, called my existing neurologist (migraines) who told me there was an autonomic dysfunction specialist in his group and it was only a three month wait. She diagnosed me 5 minutes, confirmed a week later on a TTT and other tests. Definitely use the list on this site. I am extremely lucky that there are two in my city but many people have to travel. Where are you?

When my husband travels I always keep my cellphone on me and have neighbors/friends/family “on call” just in case. I can no longer drive but do try to take it easier with everything, exercise, being upright etc. Myhusband makes several batches of food that we freeze so I can just zap it and eat it. Friends and neighbors check in and offer to pick up fresh food which I accept and online delivery of lots of other things. My sister checks in a couple times of day anyway but she’s more vigilant when he’s gone. It took me awhile to learn my limits and to accept help from others but I found that people, even neighbors I barely knew, are happy to help. I pull out the disabled card (I am) if I need an unexpected service like the time a tree came down on our fence. We have dogs so I needed a tree company to come take it down ASAP and a friend put up a temporary one. I probably would have had to wait weeks otherwise. I guess accepting help and being prepared are good for me and my loved ones peace of mind.