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Thank you, Sonya. It’s always helpful, especially for newbies, to get this information.

I had many similar symptoms. After my catchecolamines test came back with high norepinephrine on standing I was put on methyldopa which helps a lot. My PCP told me it is an old drug and safe even for use during pregnancy. You might want to check with your Dr and ask about the blood testing as a place to start.

A good rheumatologist should diagnose and treat you with some autoimmune disease with a positive ANA and bilateral lower joint pain. What the diagnosis might be, UCTD, MCTD, fibromyalgia who knows. Many rheumatologists won’ diagnose with this presentation but good ones will base it off positive ANA and symptoms. I saw two who dismissed me until my PCP suggested one who did. There are medications that can help.

I had the gastric emptying test with my POTS tests, TTT, QSART, EMG etc. I wasn’t scoped until later when I developed GERD-like symptoms and couldn’t eat. My neurologist did all the initial testing. Are you seeing a neurologist? In my experience they look at more issues than cardiologists. That’s just my experience so please don’t anyone flame me. I know that there are awesome cardiologists, I have one now in addition to my neurologist. Can whomever diagnosed POTS recommend a more POTS-conversant GI?

Yep, mostly joint pain but also muscle aches and occasional really bad GERD-like feeling. I have been diagnosed with an autoimmune disease but which one is flaring is almost impossible to differentiate. PT, OT, heat, cold, 3 or 4 supplements to decrease inflammation, gluten and dairy free, low sugar, little processed food and occasional extremely short rounds of prednisone all help a little but often not enough. I just started OT for my hands and am hopeful that will help somewhat.

I don’t have an explanation for the BP and haven’t had my testosterone tested but am post menopausal and my BP, especially diastolic are high, certainty higher than before. I will be interested if anyone has ideas too.

I agree with Pistol, best be checked for a UTI and IC. These were some of my earliest symptoms before diagnosis and I had the scope etc with nothing found. My neuro asks me about these symptoms as a standard set of questions every time I go. Like many things the autonomic nervous system controls the bladder too. Someone mentioned it is more common and/or a feature of hyper POTS but I don’t know about that. It’s terrible but mine waxes and wanes with flares.

I get the need to urinate on standing pretty much all the time, flare or not. I have an autoimmune disease and never really know which is flaring unless I get joint pain, sore throat and malar rash. Have you been recently checked for autoimmune disease? Mine showed up awhile after my POTS and I saw some video by Dysautonomia International recently that happens to some of us. Just a thought. Feel better.

I had my first cold virus in December since developing full blown POTS in 2014. It started a lupus and POTS flare that I am still battling. It is very disheartening. I have continued my exercises but back off on really bad days. I believe it is common to have this reaction to an illness. I suspect as we age (I’m 56) it’s harder to bounce back just like it is for our healthy contemporaries. Maybe contact your Drs and see if they have any advice? I’m really, really sorry that you are going through this all again.

Thanks, Pistol. Always good to be reminded to check even after supplementation.

Thanks for the kind and wise words. I appreciate the support/understanding.

Just what I needed after a huge row with my husband who normally is supportive but just doesn’t get the latest flare. I actually said to him that I wished he could get it for one hour so he could understand. Thanks for sharing.

First off, I hate that expression but it honestly describes trying to find meds/treatments post-flare for me. I was by no means stable before but was better pre-cold virus back in December. Ever since that and the subsequent UCTD flaring I just cannot find any patterns in anything. Low BP/ high BP, normal-ish HR/high HR and all the fun accompanying symptoms in the span of hours. The worst is high BP and high HR together plus shakiness, dizziness, flushing, and unrelenting fatigue. I mess with my meds (fludricortisone, betas, alpha blocker) as instructed by MDs but cannot get it right. I keep up the best I can with PT and exercise but I just feel whiny and my husband doesn’t seem to get it this time. Thanks for listening.

I was tested every five or so years for 30+ years before my ANA came up positive. After I developed POTS I was tested 3 times in 18 months and finally that was the positive one that got me to a decent rheumatologist (2nd I saw after developing POTS) who agreed that treatment, even without a positive ANA, is necessary. I started Plaquenil which helps the joint/muscle pain and fatigue somewhat. I still get bad flares but that drug has really been beneficial. Keep requesting tests!! Or find a decent dr that will treat without a positive test. It’s worth it.

My POTS hit while going through menopause. My neuro says they see peaks in patients around puberty and menopause so it’s not unusual that your symptoms are worse now. Have you spoken to your Drs about this? Is your gynecologist familiar with POTS? I was put on HRT which has helped with night sweats and insomnia and possibly a little bit with POTS symptoms. I definitely had the hot flashes which are miserable but I believe HRT helps them too. Menopause and POTS aren’t fun but getting to knowledgeable Drs is key. I have never had the breathing issues so don’t know anything about that. Dress in layers, moisture wicking pajamas and tops and other menopause specific items should help somewhat. Hang in there.

When I had severe weight issues I used Garden of Life meal replacement as a supplement to meals/TPN. I couldn’t tolerate Ensure or any with whey protein. I ate a lot of nuts and nut butters for calories too. For brain fog I rest, get the best sleep possible and occasionally take modafinil. Some people take Ritalin. You need a prescription for both. I also find exercise, both strength training and light aerobic, seated, helps.

Have you had your catecholamines (? Spelling) checked? Alpha blockers, clonidine or methyldopa have helped me and many others.

I’m just wondering how people manage the 2-3-4 liters a day we need. Drink slowly all day, more in the morning, slam 16oz every couple of hours or?

I have never fainted, even on the TTT. That isn’t in the diagnostic criteria, it’s an indicator certainly but not the only symptom. Maybe if you look at the main page of this site or Mayo’s you can find the criteria. My opinion is to get to a Dr who specializes in dysautonomia. There’s a list of those on the main page of this site too.

I agree with @Missy M, monitor and share with your Drs. My neurologist told me to drink 16-32oz of water with salt and fludricortisone a half hour before I get out of bed so I sit up drink it and take the pills then lay down and meditate for a half hour. It stabilizes me enough to get up, put on my compression stockings and make some caffeine free tea before I sit back down.

Wow @Pistol, thanks for the info. Is there any treatment? I will definitely ask my cardiologist about it.

Mine hit 160 on the tilt table.

My own thought, not discussed with Drs, is that we don’t use our big muscles and bones enough to keep them strong. Are you doing strength training of any sort? It likely can’t hurt. My vitamin D was low too but has come up with supplements. I’v read, no idea where, that some Drs and/or countries use hormone replacement therapy for osteopenia. My GYN put me on it a year ago for something else and I think maybe, perhaps, possibly that it helps the dysautonomia. I’m not sure, I just recall seeing some improvement at that time although I started a different beta blocker about a month later so? What I’m trying to say is don’ be afraid of HRT if the Dr suggests it. As you say, it’s always something. Please let us know what happens.

I tried five betas, same results as you before I was put on Nebivolol and absolutely love it.

I frequently get this way before I get diarrhea but I haven’t associated it with low BP or high HR or adrenaline rushes or anything. I always just thought it was a pre-diarrhea phase and drink oral rehydration salts to replace electrolytes and go to bed early. My father-in-law used to get the same way before diarrhea when he had congestive heart failure. I’m sorry I don’t have anything more to contribute. I do hope that you are feeling better today.