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Hi @gh0st. I was felled very dramatically after two nasty viruses in a week. Absolutely disabling symptoms and all of them except fainting. I can tell you the hour that my ANS broke. I had very minor symptoms before and went through several years of high stress in the years before I really got sick which I think were contributory. I went from working full time, socializing, traveling to house bound literally overnight. I have a very good group of Drs that treat me at an autonomic group in my area and another at a university hospital also in the metro area. I thought I had CFS, still think that, and read a book that suggested that CFS is related to autonomic dysfunction so I booked an appointment with a specialist neurologist. I was in the room 10 minutes and she figured it out. I had never heard of dysautonomia or POTS before. I had no idea how lucky I was to have Drs in my area that treat it and to be diagnosed in about 6 months. Fortunately no one thought that it was all in my head but being over 50 Drs tend to take you more seriously. I saw 11 Drs before being diagnosed and all my tests were normal. Good luck to you too.

@bombsh3ll the first pharmacy I got my prescription stockings from recommended the device attached. I don’t know what you call it but it’s great for getting them on. I get the Juzo stockings with “silicone beaded” top and they stay up great. My Sigvartis stockings don’t stay up quite as well but I bought some of their “It Stays”. It’s very sticky and works very well. Apparently it’s like what celebrities use to hold up revealing outfits. We’re stars!

I suggest that you keep a log of BP/HR symptoms to show the cardiologist and the folks at Vanderbilt or elsewhere. I’m three years into this and still keep records if I feel poorly or start new meds. The disease causes lots of fluctuations in BP/HR so try to not freak out too much unless the BP gets really high again. My Drs say not to worry unless it gets over 180/110 but you should see what your cardiologist says. When I catch a virus my BP and HR go high so you are not alone. Fludricortisone dosing is very tricky for me. I take a half of a 0.1mg two days then a quarter tablet the next day. It took me years to get this dose figured out and I still adjust as needed. I strongly recommend getting to a POTS specialist, cardiologist or neurologist. Check out the main page of this site for a list.

Hi @gh0st. I wear thigh highs because I can’t tolerate the waist-high ones. I like Juzo and Sigvartis brands. Juzo you can get tie-dyed in some colors. They do sell non-prescription strengths. I’m severely disabled so put them on as soon as I get up and take them off right before bed. They help keep blood from pooling, raise my BP somewhat which lowers my HR somewhat. Lots of salt capsules and fluids also help my blood volume. Nothing reverses my symptoms but meds, stockings, fluids all help a bit. It’s been three years of trial and error so far. More to come. I have flares which are frustrating but part of it all. Lots of less severely impacted folks only wear compression garments when they know they will be upright for whatever reason. I suggest getting a device to help get them on although recently the companies provide flimsy-ish items to help which aren’t as helpful as the “hardware” ones.

Interested, @Pistol. I will ask my neuro. Thanks

Many people report being more symptomatic before their periods. My neurologist reports a surge in diagnosis during puberty and menopause so it pretty much has to be related somehow. I’m no medical Dr but you might want to try OTC compression stockings and see if they help. I use prescription ones and they help somewhat.

Thank you all for the replies. @ANCY I find it very interesting that you reacted similarly to IVIG as I did to pred. The high BP/HR especially. It must be a dramatic improvement to make you deal with the side effects and still want more IVIG treatment. I will be interested in what your immunologist discovers. To be honest I am rather frightened of getting IVIG primarily because of the high BP/HR but the meningitis sounds really scary. Have you been checked for the Mayo autoimmune panel? Mine has been negative twice so it seems my Drs don’t want to battle the insurance company for the same reason of being denied. Thanks again.

How have any of you reacted to prednisone? I took a teeny tiny dose for two days for my MCTD flare and had high BP and HR for three days but now my BP and HR are better than they have been since I got sick. At least for the past two days. Absolutely everything else is the same, fluids, salt, supplements etc. This seems to lend credence to an autoimmune issue with me. My Drs are considering IVIG. Would my prednisone experience be indicative of any reaction to IVIG? Thanks for any comments.

Compression stockings, whether prescription or not if you can’t get a script from your Dr help a lot of us.

I’ve been diagnosed with hyperadregenic POTS for 3 years. My BP and HR are all over the place with BP especially increasing to 140s-160s/80-90s during the day. Generally messing with my fludricortisone dose allows me to keep it around 130-140/80-ish. I take methyldopa mid day for the norepi surges. I’ve noticed that recently my HR only stays comfortable in the 60s when my BP is 140s/80s or higher. My BP dances around excessively based on oral fluid intake so I can usually raise it that high with a liter of water/rehydration salts but not always and not at all recently. Lately it’s been high HR and high BP which PRN beta blockers only lower BP not HR. I’m just wondering if anyone else has experienced this? Any thoughts? I will ask my cardiologist in April when I see him. Thanks.

Beta blockers can impact heart rate during exercise so my cardiologist and PT tell me to go by “perceived difficulty”. I don’t know if alpha blockers also do this. Can you get an order for PT? I have worked with several over the years both at home and eventually at a small clinic. I go once a week when I am well and I find it helpful not only for exercise help but to ask questions and have things documented on my chart for my Drs to see. I started on a bike very slowly, literally 2-3 minutes when I was extremely bad and eventually also got a rowing machine and worked up to 30 minutes every couple of days. I do strength training other days. At PT I started with a water treadmill and now do a regular treadmill but I haven’t been to PT since late November because of flares and fear of the flu. I intend to go back as soon as the flu slows down. I try to listen to my body and only do what I can manage. I’m in a bad flare right now and have had to back off considerably. It’s vital to maintain fitness and helps a lot with fatigue, sleep, mood and ability to be upright even if it isn’t for very long. I consider it as important as medication. You can do it!

@Debbie Rose I tried provigil for a few days and it worked great for several hours but then I got a terrible crash. Did you have that happen when you first started it? If so, did that decrease over time? Thanks.

My TTT was pretty awful and replicated all my symptoms. I lasted 15 minutes but didn’t faint, I never have. To diagnose hyper POTS you need your catecholamines checked. Some places do it during the TTT, some at other appointments. The test has to be done correctly, blood draw after laying for 10 minutes then another draw after standing 10 minutes if I am remembering correctly. My BP jumps around as does my HR daily. The med I take for hyper POTS lowers my BP, sometimes dramatically and then my HR jumps. It’s a delicate balance that can be thrown off easily. We are all different but if you have a Dr familiar with POTS you should trust them.

A few times I have worked up my aerobic exercise to fairly light every other day or a bit more intensity to two days off between workouts. I have setbacks and back off with some regularity. I’m pretty certain that the first cold really was a cold. There was a woman coughing and sneezing all over the rheumatologist’s office and two or three days later wham. The other two have the same symptoms and have occurred after increasing my exercise. I also do strength training a couple of times a week. I am housebound and just about any activity brings on pretty intense fatigue but I know PT and exercise have helped with some things.

Thanks for the replies. @dancer65I had forgotten that CFS could cause these symptoms, thanks. Unfortunately, my neurologist told me point blank she doesn’t diagnose CFS three years ago. I’m going to ask again and ask my new PCP. I certainly have all the symptoms and actually thought that was what wrong with me when I first got sick. I made an appointment with an ANS neurologist for this reason only to be tested for and told I have dysautonomia.

@Terri I started with clonidine which dropped my BP too much so switched to methyldopa which I find more smooth. It does drop my BP but I mess with my fludricortisone dose and salt and water intake which is sometimes successful and sometimes not.

I came off fairly quickly, no problems. It did make the hyperadregenic component more obvious which led to me being tested and treated for it.

I’ve been diagnosed with hyperadregenic POTS for 3 years, autoimmune UCTD for 2. It seems like every time I try to increase my aerobic exercise I get a cold. It’s not the flu, I’ve been tested but I’m wondering if it’s the same virus that I can’t clear (exact same symptoms) or ?? All my UCTD symptoms are also flaring too. Anybody else have this happen? Other than becoming a sloth any ideas? TIA.

I like Trioral. Reasonably cost effective and only has dextrose, sodium and potassium. I'm stupidly sensitive to magnesium in other products.

Has anyone tried any different acetylcholinesterase inhibitors other than Mestinon? I'm thinking the ones used to treat Alzheimer's. I tried pyridostigmine, it was the first drug my neurologist gave me, but it caused severe diarrhea. Has anyone had that side effect wear off and then became able to tolerate it? I'd like to try something in this class that maybe doesn't have such GI effects. I had the same reaction to midodrine. Thanks!

Hi Valiz. I know it’s somewhat controversial but have you checked out getting it from Canada? My docs will write a paper prescription and then I can take a photo and email it to a pharmacy there. I did this for Corlanor when my insurance wouldn’t cover it. I had zero problems with getting it or the drug itself. One batch came from India and one from Turkey. I realized that I was getting rebound tachycardia when the drug wore off so stopped it but would do it again if something wasn’t covered. Prices were much, much lower. Just a thought and please don’t anyone flame me!

RC, yes interesting indeed. I’ve had both a stomach biopsy and blood test for celiac and sensitivity. My rheumatologist said that the newer tests are better at picking up sensitivity. Both tests were negative and after being gluten free for 3 years I started eating limited quantities of gluten containing items. I had no reactions until after about 6 weeks when joint pain in my hands and feet started again. I have undifferentiated connective tissue disease that is fairly bad in the joints in those places. I’m stopping the gluten again to see if the pain subsides. I have noticed absolutely no effects on the POTS. I’ve upped my probiotics and will purchase the Restore product. I’m already taking Garden of Life probiotics. I agree that the immune system in our guts are important. How did the Co Q 10 impact you? I’ve had two POTS neurologists suggest it and have taken it for a couple of years. Same for omega 3s. I’m interested in your experiences. My BP is very labile and I am hyper POTS so lowering BP isn’t always bad for me.

Well, it’s all a bit subjective but POTS and SFN are better managed. I still suffer tremendous blood pooling in my legs and is that from the SFN or ? I don’t feel the pain of SFN much anymore and I’m better at keeping my BP/hr under control as long as I’m not upright long. I was extremely poorly 3.5 years ago; I weighed 84#, was on TPN, hospitalized, had no control of BP/hr, digestive track was seriously messed up and we were trying to find meds I could tolerate. So, yes it’s all better but... Yes, I have been housebound since POTS.

I have SFN which presented with my POTS diagnosis. Gabapentin has helped as has plaquenil for a subsequently diagnosed autoimmune disease. My POTS hasn’t improved but I’m on meds and PT that help me manage it better. I still get flares and experiment with meds/dosages but am housebound. The longest I have been upright is about an hour but it was very difficult and has only happened twice. I developed full blown POTS after a viral illness 3.5 years ago.

I tried five different beta blockers before I found one that works reasonably well. Don’t be afraid to ask for a different one, some work differently and help some of us but not others.