Uncommon(?) POTS symptoms

[plaster89]

Hi all,

I have been diagnosed with POTS some time ago but still couldn't find anything to give me a substantial improvement. I have that 30bpm+ increase when moving from lying to standing up, though my HR is lower on beta-blocker so it isn't going that crazy. I often have elevated blood pressure when sitting/standing, but it is always normal when lying down. Another one is the acrocyanosis that happens when you stand up and it is not present when I lie down. I know this is pretty common. But I wonder if some of you have any of following symptoms or are they really connected to POTS?

* low-grade fevers, or should I say hyperthermia, as the fever drugs can't bring them down and it has no effect.

* lack of moisture in the eyes, I had a Schirmer's test and the result showed severe dryness, I barely got any moisture.

* when they did a Valsava maneuvre and asked to take a deep breath but my heart hasn't responded by slowing down as should, it even sped up

* elevation of the B-cell white blood cells with the lymphocytosis often present (though sometimes it is perfectly normal and sometimes I have too much neutrophiles, there are big variations)

I don't know if the first three are directly related to the POTS syndrome/dysautonomia or signalling the other disease that can be the primary cause or at least the second disorder. The fourth one can be caused by an autoimmune disease (it is completely cured now) which started my dysautonomia. However I'd like others to say if they had also experienced these symptoms.

[mollydoll]

I just got a low grade fever yesterday that lasted a few hours and went away. No cold symptoms or anything. I was wondering if it was pots related as i'm having quite a flare. Yes to number 4 for me as well. I'm seeing an endocrinologist soon so maybe that will be explained.

[p8d]

I'm no Dr but some of that sounds like Sjorgen's or other autoimmune issues. Do you see a rheumatologist? Just throwing that out there.

[SarahA33]

Hey Plaster -- nice to hear from you -- though sorry it's under these circumstances! I thought Sjögren's syndrome also.. dry eyes, low grade fevers. There is a study we recently posted on our facebook page just completed by Dr. Brent Goodman from Mayo Clinic  -- Spectrum of Autonomic Nervous System Impairment in Sjögren Syndrome" and we include a list of Sjögren symptoms. You might want to take a look there. Have you had a lip biopsy? 

[Guest KiminOrlando]

Ditto Sjogrens.

Autoimmune diseases seem to go hand in hand with some types of POTS. I have Rheumatoid Arthritis and Lupus. 

Before I began treatment for them, I ran random fevers that correlated to nothing we could figure out.

I hope I am wrong.

Take care.

Kim 

[WinterSown]

Plas, I am so sorry you are experiencing these symptoms. At Sjogrens.Org I found a page with a list of suggestions to help you through your symptoms. I have been reading them and many will apply to all dysautonomic patients., it's a motherlode of advice--a lot of it common sense, a very easy read too, and it is all on the same page:
https://www.sjogrens.org/home/about-sjogrens/survival-tips

I hope you feel better soon!

T

[plaster89]

Thank you for answers.

I haven't been to a rheumatologist but was tested for ANA a few years ago (when symptomatic) and it was negative. I don't know if this exclude Sjorgen's syndrome or other tests are done to confirm/exclude this disease. I haven't had lip biopsy, no one even suggested that to me. My hormones are also not working as it should, dhea is very high, way above normal limits while testosterone is low.

[p8d]

I tested negative on ANA tests for 30 years, including 3 tests in 18 months after developing full blown dysautonomia and POTS before one finally came up positive.  After that a new rheumatologist diagnosed undifferentiated convective tissue disease.  No other Dr considered my increasingly achy joints (I couldn't find comfortable shoes, my hand writing got very bad, hips always ached every morning) indicative until the ANA came up positive.  I had many symptoms of AI disease all those years and my mom has three.  I requested that final, positive ANA.  I now have a great nurse practitioner who will order tests.  Please keep getting tested and find a Dr who will diagnose on symptoms, not just labs.

[p8d]

Treatment for the AI, Plaquenil, has helped.  Not the POTS but the  fatigue somewhat, achy joints, fevers, malaise.  It's one of the best things I've done for myself.  Unfortunately, it makes it hard to balance exer/rest needs.

[Debbie Rose]

I have dry eyes and other symptoms of connective tissue disease but my lip biopsy (that I requested) was negative. But too, I have Neuro-cardiogenic syncope and not "pots".....what ever that means. I gave up on diagnosis' a while ago because of cost and ( have no idea how darker letters occurred-lol) now just treat my symptoms and follow my EP doctors suggestions. Exposure to hot temp being outdoors always raises my body temp for several hours. Same goes with cold indoors temp will lower my body temp....anyone else notice this?? Glad the plaquenil worked. I too have joint pain and fatigue but I am 62 and family history of arthritis and I was diagnosed with fibromyalgia in 95 (think my POTS symptoms started then,really). It was the popular diagnosis in the 90's....I can't work because stress causes my increased heart rate, anxiety, drops my BP,makes it hard to breath- I think I have hyperadrenergic reaction when this happens but have not been diagnosed as such. I was just happy to get "A" diagnosis from the tilt table and no longer deemed "crazy and all in my head"

Debbie 

[Linda Spicer]

Debbie, I have hot and cold issues as u do.  I was diagnosed at 56-ish and am now 68 I do fairly well now most of the time. 

[Ami Noble-Andrews]

Hello, so sorry your going having a bad time at the minute, l get fevers around one or two a month and have been having these for at least 10 years now , there appears to be no reason for them , lve had food, drink, salt, drugs and even doing to much ( ha...thats a laugh) about the house .

what  is fairly new for me is the cold and l do mean cold . I have had my temprature taken at 27  degrees before now , shaking, grey, cold sweating and feeling so bad. My consultant doesnt know why l do this but its getting to be once a day if not twice now and its horrible. My only answer to these hyperthermic attacks is  to go syraight to bed with a furry blanket next to my skin and add more until you feel comfortable then sleep. Another horrible thing is my husband has woken up in the night to find me like this , turning on all the lights and getting a mirror to see if lm DEAD he then wakes me and l start the piling on of the blankets ......even in the full heat of the summer.

As a long term POTS sufferer ( some 48 years now )  l think in my case l can say its definetly one of the many POTS symptoms ....by the way my 27 year old son (POTS started very early on ) gets fevers as well !

look after yourself , stay cool ....stay warm ....and watch lots of romantic dvds .....that warms the body up 😉😉😉xxxxxxxx

[RichGotsPots]

I have Sjogren's Syndrome, Hyperadrenergic POTS, IST, autonomic Neuropathy and Delayed Orthostatic Hypotension.

the only thing that matches a symptom of Sjogren's that you mentioned was dry eyes. You need other things for a diagnosis. Also keep in mind half of almost all Autoimmune illness patients are seronegative, which means they have not positive antibodies at all, not the antibodies for their particular illness which is SSA or SSB for Sjogren's and usually not high ANA. Many doctor will stop looking when a patient is seronegative and that is a big mistake. In Sjogren's if your SSA or SSb is negative then the next step is to get a lip biopsy by someone who does a lot of lip biopsies for Sjogren's. If done wrong not enough nodes are taken and also it can cause permanent damage. So be careful if you do that. I had a positive lip biopsy. I also recommend you call the sjogren's foundation and ask for a referral don't just go to any rheumatologist. The other test if you lip biopsy is positive is salivary nuclear scan. Also if you have dry mouth is another symptom.

its important to mention that your parasympathetic nervous system controls your tears and saliva. So you could just have a dysautonomia causing that. And an abnormal Valsalva means your parasympathetic system is messed up.

as far as temperatures issues they could be hormonal like thyroid and other things or you could have autonomic Neuropathy or Mitochondrial.

High white blood cell count means either Allergies (even mast cell), parasite, Autoimmune or infection. In healthy people it usually means infections. In sick people it's trickier.