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I get low grade fevers when I am flaring from over doing it and sometimes just for fun (ha!). I get the bad fatigue, malaise, aches, pain feel horrible. I felt this way for 2+ years before my autoimmune disease was diagnosed which was after my pots diagnosis. I still get this way if I overdo anything. My Drs and I believe my dys is autoimmune and I saw my first improvement starting meds for that. Keep asking for tests for autoimmune disease.

Yep, didn’t work for me either.

Yes, I get this too. I also got it pre-pots with migraines. I can’t find words, say the wrong thing, concentrate well. I no longer can read difficult or long material because I cannot focus that long and/or forget what I read before. I read series of books so I don’t have to deal with many new characters and read paper books so I can skip back and forth to re-read what I have forgotten. It’s especially worse when I have overdone it. I take guanfacine as an alpha blocker which is an ADHD drug and helps a bit and I take modafinil as needed for the fatigue.

Before my problems with hyper pots went nuts I wore thigh high compression stockings too. They raised BP 10-20 points systolic. It’s worth trying and seeing if it helps.

If feet/legs turn red/purple especially after a shower or other hot environment it’s a sign of blood pooling. I generally only noticed mine after a shower.

@bombsh3llevery time my Dr or I do orthostatic vitals we catch the drop and overshoot on “regular” monitors. It’s interesting that yours is so quick. We are all so different! I only had one positive on the Celltrend which seems different from lots of other people. I am amazed that you have no gastropressor reaction! I am lucky in that I can generally, if not overstimulated, control my BP with meds coreg and guanfacine (shoutout to @Pistolfor this combination) and fluids. For now it’s working ok but come summer... I hope that you have a good appointment next week at UCLH. Please let us know.

@NatopsMaybe but I doubt it. I believe it’s more concentrated. The dose is based on weight so I infuse 30mls/week. Because my insurance covers it I don’t know the actual cost but I am very careful with the vials!

Why not try subcutaneous IG? I tested negative on the Mayo panel but positive on the Celltrend one and was diagnosed with UCTD after my pots diagnosis. That, along with viral onset and a strong family history of autoimmune disease convinced my cardiologist, neurologist and pharmacy benefits manager to try IG. I was too chicken to try IVIG because of a history of migraines and I feared asceptic meningitis so we went with SCIG. It takes longer than IV to hit the loading dose and see positive effects but it’s better than meningitis. I infuse weekly at home. It’s very easy. It’s not improving BP/HR yet but it’s slowly helping a number of other symptoms. I started in November and hit my loading dose 5 weeks later. I was told it would be another 5 weeks to see any improvement and then that should increase with time. That’s about what happened. I still flare but I am hopeful.

I am hyper too, diagnosed via catecholamines after laying 10 minutes-blood draw, standing 10-minutes- blood draw. Norepinephrine was very high standing. My neurologist suspected hyper because on tilt my BP dropped at first then went up for a few minutes then went down slowly, it it still does this. I don’t know what the numbers were during the tilt. I am pretty sure I am hypovolemic because I have a crazy gastropressor response. That’s one test my autonomic center doesn’t have the equipment for yet. 500mls can raise my BP 20-30 points systolic so I fluid load in the morning then back off later on. If I am well hydrated, usually later in the day, I don’t get the hyper symptoms unless I am upright too long. That varies from 5 minutes AM to sometimes 30-40 minutes later on. My underlying cause is likely autoimmune. I have UCTD, diagnosed post pots and a positive on the Celltrend tests. I started SCIG in November and am starting to see some benefits but not on BP/HR.

I am sorry that you are going through this. When I first got extremely ill a friend told me about a book by Toni Bernhard, How to be Sick. It’s lightly based on Buddhist principles. I found it helpful.

Slow and steady with built in rest days helped me. I literally started with 3 minutes on a stationary bike. I can’t do aerobic exercise even every other day, I need two days off and do strength training on those days or completely rest when I have to. I do a modified Levine protocol but I suspect I am still somewhere in the second month after 4 years! It’s all I can do. I think the programs are pretty intense and likely for more functionality fit people than me. Having said that the water treadmill in the beginning at PT and working with a PT have helped a lot so don’t give up on it. I now have a bike, rowing machine and regular treadmill at home that I alternate between 3-4 times/week.

@pistol, thanks for the info. I have been on the carvelilol for about 8 weeks so we didn’t do anything quickly. I agree that they started me too high and will be more vigilant in the future. I have been giving each dose change at least two weeks before I ask for a dose change. I completely agree with you that everything takes longer for us to adjust to, it’s just so hard to be patient!

I am firmly in the autoimmune causes pots camp. My symptoms from the very beginning were similar to what you are describing from the flu. I was sudden, post-viral onset which is like many autoimmune illnesses. I was told to get the blood tests for markers while in a flare. Not easy when you feel terrible but that’s when they are more likely to show up apparently, certainly the ESR. My wbc was low for years and finally came into normal range in December for the first time in 4+ years. The very first Dr I saw after I became ill, other than PCPs, was a rheumatologist because my family is riddled with autoimmune diseases. Bloodwork didn’t show anything so I was sent on my way. My joints were swollen a bit though and PCP gave me a medrol dose pack which helped a lot with everything except BP/HR. That, along with positive bloodwork a year later convinced a second rheumatologist to diagnose UCTD. It was the bloodwork though that was the deciding factor in starting Plaquenil. That helps a lot with joint/muscle pain/fatigue etc. but does nothing for BP/HR. That was the first drug that helped anything for me but it takes months to see improvement. I was tested for lupus for ~30 years before the ANA came up positive which just shows the deficiencies in testing in my opinion. Unfortunately, rheumatologists seem very wedded to the tests in my experience. A good one will treat without positive results and my current one would have likely done so. My autoimmune diagnosis and positive Celltrend results convinced my PBM to approve SCIG which is starting to show some benefits too. So much new research is indicating an autoimmune basis for many of us I really feel lucky that my Drs, cardiologist, neurologist, rheumatologist all think this. My cardiologist suggested IG on my very first visit. He was convinced my pots was autoimmune in origin. Keep getting tested, ask PCP if you can try a short course of steroids and see if it helps. I hope this helps!

@PistolI started on 6.25mg which was too high, BP tanked. Now on 3.125mg twice a day so increasing that won’t help. I have a message in to the cardiologist and should hear from them tomorrow. I probably will call the clinical pharmacist associated with my PCP at the local medical college and see what he says. I would be happy to add the bystolic in addition to the coreg and wonder if a higher dose of that might lower BP. I just find it interesting and baffling why one works on BP and the other on HR. I think for healthy people there’s a reason but for us?

Does anyone have any idea why a selective BB (bystolic) controls my HR but does nothing for my hypertension while a non selective (coreg) lowers BP but does nothing for HR? Thanks.

HRT didn’t make any difference in dys symptoms. My cardiologist told me to get off and my neurologist said they put people on BC pills to lower BP. Probably a pre vs post menopause thing.

I am an older onset hyper person, it came on two years post menopause after a viral illness. I took florinef for 3 years until my BP started going into crisis territory last summer. The two things I was told to stop immediately was florinef and HRT. My BP generally is fairly low in the am but climbs during the day and I am incredibly, incredibly sensitive to oral fluids. I seem to have developed a robust gastropressor effect. @PistolI too would love to read about the five types of hyper pots.

Thank you all so much! When I first discovered this forum it made me realize that I wasn’t alone and so many people over the years have patiently answered questions. I feel like this has been a literal life saving place.

I have severe fatigue most of the time and it’s got me house bound for 4.5 years now. Going to Dr or PT appointments is all I do and very difficult. I have to take anywhere from 1-4 days to recover. I do light workouts after one complete rest day and try to rest the day before. This has almost always been my most debilitating symptom. I take modafinil on bad days which helps somewhat. I tried Adderall but that gave me tachycardia. Going on plaquenil for a newly discovered autoimmune disease helped.

Start slowly, recumbent if necessary, give yourself rest days but try to a bit every day. I agree with @bombsh3ll on beta blockers, are you on any?

Wow, this is really interesting! A bio marker indicating another autoimmune cause for many of us. I wonder if anyone is on statins and if they have helped. Thanks so much for posting.

I am with Pistol on this one. I see my cardiologist once a year and his NP 6 months after I see him. I see my neurologist NP every 3 months. If you don’t trust this one ask for a second opinion from another one. Different eyes/experience are usually helpful and can give you peace of mind.

@jklass44I think the EMG was to rule out something, possibly Parkinson’s but I am not sure about that. I think in cases where dys comes on post viral, suddenly, autoimmune diseases should be ruled out. Many such diseases are kicked off this way. In my case that’s exactly what happened and my maternal family, especially my mother, who has 4 autoimmune diseases. My mom’s started after a tick bite. I think a fair amount of the research is finding a link between dys and autoimmunity. @JimLI think it’s 1-2mm per month not day but I am not sure. It’s extremely slow whatever it is.

@Pistolshe’s talking about the peripheral nerves that are being attacked by the autoantibodies. In my case the a-1 adregenic autoantibodies are attacking the nerves that tell your peripheral blood vessels to constrict on being upright. At least that’s what I think it is. Nothing to do with the shingles shot, sorry to be unclear. When we discussed the blood pooling I said I think that it’s not going up my legs as far, we’re talking centimeters here, and she said it makes sense because the nerves demylate from the toes up the legs so if the nerves are re-growing they go the opposite way, from the central to peripheral and reach the toes last. Nerves regrow extremely slowly though. Is that clear as mud?

@bombsh3llmy Anti a 1- adrenergic Antibodies test came up positive, everything else was negative but with my UCTD diagnosis as well my insurance company approved SCIG. I opted for SC rather than IVIG because of a history of migraine and after 5 months I am seeing some slight improvement in fatigue/pain/brainfog/malaise and I think some blood pooling. Nothing dramatic at all but every little bit helps. It’s not helping BP/HR yet and I still have days that are terrible, especially if I overdo it (for me that’s Dr/PT appointments). It took five weeks to hit the loading dose so the first real impact only started in January. I flared badly after the second shingles shot a few weeks ago. My neurologist said it will take years for the nerves to grow back because they grow so slowly but we are giving them the chance now.