Nobody like me: Unique set of symptoms (burning, tingling, sweating, palpitations, etc...)

[MTRJ75]

20 hours ago, Amyschi said:

Hi MTR, I just came across your posts to this point, as I just posted a similar question today and happened to see yours.  Sorry for all you are going through, but it is amazing, as we could be twins.  The only thing different is, instead of sweats, I get severe chills for hours down my arms and legs with an inability to get warm.  I just wanted to mention, and all are probably aware of this, that I read you can often have negative antibodies to the Sjrogren's; that the only definitive way to diagnosis it is through a lip biopsy.    I suspect you are younger than I (at 60), so it is a little scarier as one gets older, blaming everything on the dysautonomia, and I can relate the fear and wondering whether to go to ER only because you feel so bad.   Since we are so similar, I was wondering if you also notice severe weakness with almost an inability to get out of bed when this happens, and also do you have urinary frequency?  Oddly, I have just started to notice this symptom.  Again, what to blame on the dysauto.   I admire you and everyone for trying the different medications.  Good luck, and maybe post back if you find the Lexapro helps this crazy circle of symptoms.  TY.

Two of the oral surgeons I visited were reluctant to do the lip biopsy due to potential complications and that was enough for me to bypass it when they said treatment wouldn't differ really. 

As for the urinary frequency, I've had it most my life, but never really considered it part of any abnormality until I had to go six times during a 2.5 hour movie a few years ago. 

I was initially very reluctant towards any medications because I believed unnecessary antibiotics and PPIs had helped create my current situation. I gave in last year and I'm at the point that I'll try anything they want and still have a few ideas of my own that I'm pushing for (LDN, medical cannibas). 

I'm currently on break from the Lexapro after just 3 weeks due to an infection the neuro wants cleared up before I try again. I had thought it was helping with the temperature dysregulation, but that came roaring back a week, so I'm not even sure it had kicked in or done anything yet. I don't have good luck with most medications. I seem to get the downsides more than the upsides of them the last few years. But we're all different, so who knows. Hopefully your experience will improve, but I'm finding issues I've had most of my life that nobody else did, which I didn't know were abnormal and I can probably now blame on ANS dysfunction. 

I'm trying to stay optimistic (when I don't feel I might be in need of immediate medical assistance) because there are so many cases of people improving or sometimes even recovering, sometimes without much medical intervention even. There's got to be an answer, but unfortunately it seems to be personalized for each individual case.  

[Pistol]

5 hours ago, MTRJ75 said:

As for the urinary frequency, I've had it most my life, but never really considered it part of any abnormality until I had to go six times during a 2.5 hour movie a few years ago. 

I have Interstitial Cystitis ( IC ) which is not uncommon in dysautonomia sufferers. Diet can greatly improve this and also aid in less urination, leading to retaining more of the fluid you ingest. 

 

5 hours ago, MTRJ75 said:

I'm currently on break from the Lexapro after just 3 weeks due to an infection the neuro wants cleared up before I try again.

I am curious why your neuro would consider stopping the Lexapro? Yes - ANY infection could cause POTS symptoms to worsen but the mechanism of Lexapro in POTS treatment is quite different.  Could you elaborate? 

[MTRJ75]

I know he was looking up the medications while I was talking to him, so maybe there's some interaction between the Lexapro and some antibiotics that wouldn't allow for the full effect. Maybe he wouldn't have changed anything if I had been on it for a month or more and it was more ingrained into my system. 

Gotta say though, not feeling any different four days off it than I was for the 3+ weeks I was on it. 

For the last few years I've been following a mostly Autoimmune Paleo diet with an occasional dip into non-AIP paleo foods and occasional bouts of weakness beyond that when I'm really hungry and don't have better alternatives. But like I said, I've always had a pretty active bladder and the movie experience isn't the norm, but the most extreme, which I feel had more to do with those new reclining movie seats. 

[Amyschi]

TY for your reply above, MTR.  I didn't realize the lip biopsy could be dangerous, but with so many issues going on, I can certainly understand that.  So sorry you have had so many obstacles along the way, but I admire your very good attitude and willingness to keep trying different things to improve over the years.    I was interested in your comment just above about the move theater seats reclining, as I am confused on this aspect.  I really have noticed the nocturia, which I never used to have, when I started sleeping on an incline due to acid reflux.  I can't figure this out, as I thought I read they encourage those with dysautonomia to sleep that way to prevent fluid loss and subsequent dehydration in the morning?   Interesting what Pistol and you have said about the Paleo diet too - may be worth trying.  I hope your infection improves so you can take a shot again with the Lexapro - - I've read that Lexapro is one of the easiest ones to tolerate. 

[Pistol]

4 hours ago, Amyschi said:

Interesting what Pistol and you have said about the Paleo diet too - may be worth trying.

@Amyschi - I do not know if the paleo diet is helpful, I never tried it. When I referred to dietary changes for IC it is a different diet. I avoid all acidic foods ( i.e. tomatoes, citrus, vinegar etc ) as well as food that cause higher acid during digestion ( all raw veggies, fruits or yeasty breads ).  So when I mention dietary changes I do not mean any specific diet other than low acid.  I just wanted to clarify. 

[Amyschi]

On 11/5/2019 at 3:45 PM, Pistol said:

@Amyschi - I do not know if the paleo diet is helpful, I never tried it. When I referred to dietary changes for IC it is a different diet. I avoid all acidic foods ( i.e. tomatoes, citrus, vinegar etc ) as well as food that cause higher acid during digestion ( all raw veggies, fruits or yeasty breads ).  So when I mention dietary changes I do not mean any specific diet other than low acid.  I just wanted to clarify. 

Got it, Pistol - thanks for clarifying!  Glad it helps your IC.