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

[MTRJ75]

Unfortunately, I suffer a lot of the same symptoms that many of you do. For me, the palpitations are generally one of the worse thing mentally and increasing PVCs caused me to make my first post here months ago. But I also seem to have a symptom set that I don't read a lot about in other people, not that I'd want any of you to have these horrid experiences. I seem to have a lot more symptoms even while I'm sitting or lying down, which I know isn't really consistent with a lot of people with POTS like symptoms. 

Last night, I ran into a combination of symptoms that is not very infrequent to me, but doesn't always hit me all at the same time. I laid there in bed for several hours, debating the emergency room, which I look to avoid at all costs because I generally get a speech about anxiety. Since a lot of these symptoms are classic heart attack symptoms, I know they're not because I have them all so frequently, but I only have to be wrong once, right? 

• So I awoke in the middle of the dream at 4am because I heard the dog yelping (poor guy has some skin allergies and must have been scratching himself in a painful spot). 
• Immediately, I had this burning, tingling, buzzing sensation with a muscle weakness all throughout my chest, down my arms, and the inside of my legs to my feet. I often get this upon waking and it can be really bad and take hours to get rid of, but sometimes it will disappear within an hour of waking. The chest discomfort is always the most concerning. 
• Profuse sweating. This has become more frequent recently. It can be the result of minimal physical activity, but not during...it starts afterward, when I sit back down. In fact, I can often feel this coming on and know that changing positions, often just leaning back or sometimes leaning forward to write something will result in a drenching sweat. This happened upon waking last night amid the pain and discomfort. I can be drenched instantly and it can come and go for hours. It can feel like my body heating up or be a cold sweat and alternate between both. 
• A common co-effect of the sweating is my digestive tract feeling the immediate need to empty itself. This is the closest feeling a get to a panic attack. It's certainly an activated fight or flight reaction and almost always paired with the sweating. 
• Palpitations - I know a lot of you get these. I get all three kinds (racing, skipping, pounding). Actually, the skipping has been absent the last few days and I've been thrilled about it. The racing I don't often get much anymore, but with these attacks I certainly get not only the postural tachycardia (heart rate was up to 130-140 just standing to get a drink), but it was constantly bouncing between 70-90 while lying down (even with beta blocker) with my blood oxygen showing between 91-94 while lying down and trying to relax. The heart pounding and feeling like I'm bouncing in my bed is a constant feature and you can visibly see it in my stomach. I can actually feel almost every beat sometimes just lying there and can tell when my rate is speeding up and slowing down for hours. 
• I took a sodium chloride tablet with the water when I woke (I have Sjogrens and thought I might be dehydrated) and then the nausea started. 

As you can imagine, this entire set of symptoms crashing me at once is often very disconcerting. There's only so much one can deal with. The neurologist has recently started me on Trazodone which I take at bed time (but I don't think it's been doing anything after two months). I had already taken CBD oil at bed time, but took 10 more drops upon waking four and a half hours later. An hour after waking, I took another small dose of beta blocker and then my Sjogrens medication around 7-8 am (a bit earlier than usual). 

After I was sure I was going to miss the echocardiagram I'd waited two months for, I took half a .25 xanax. I hate doing that and have a bottle of 10 that's lasted since January, but it usually works to at least calm my nervous system from the constant buzz and allow me to nap for a couple of hours. 

This ended up a much larger post than I expected and like I said, it's odd, I've been so happy my PVCs and reflux have calmed down the last few days, but then I always seem to get hit with the above set of symptoms out of nowhere (though I can sometimes trigger the post-exertional sweat). There's a general weakness feeling that comes across my chest muscles, like I can even hold myself up when this hits hardest too. 

I'm just running out of answers. The neurologist is not an autonomic specialist, but due to insurance issues, he's trying and is all I have. His plan is to cycle through different medications, but both he and the cardiologist (who has autonomic issues herself) say I'm a unique case. My primary doctor just wants to give me anti-anxiety meds. I've only had him for a year or so (again, insurance issues - been through four primaries in five years) and came to him with so much going on that it must anxiety. I had to explain POTS and dysautonmia to him a few months back. 

I don't blame anyone for not wanting to read all this, but I'm glad I at least got it all out. I really hope nobody else is suffering like, but if there are people who deal with anything like this and have found any direction or answers, any responses would be appreciated. 

[Random-Symptom Man]

I'm sorry it hit you all at once. That sucks! 

My doctors also say that I'm unique, though I get many of the symptoms that you a d others here do. I hate that! I want to be boring and easy to figure out when it comes to medicine. 

I didn't do well on trazedone. I got more severe bradycardia than normal. I would wake up with my heart leaping out of my chest. I didnt have a watch that measured my hr back then, but I'm guessing less than 25bpm. It made my chest hurt for days. My hands and feet would feel funky for days. Combine naturally low O2 (91-93) with bradycardia, and it ain't good for the body. I would wake up with the sweats. I would be freaked out. I couldnt sleep until the next night. It was horrible. The really bad bradycardia stopped when I stopped taking Trazodone. 

I get the gastric emptying too. It's horrible. Especially when you dont make it to the toilet in time. It's just humiliating. 

You may be unique in your exact symptoms, but you are not alone.

[MTRJ75]

Thank you for the response. I'm sorry you have to deal with most of this too. I do seem to get more side effects than benefits from most medications (it's been suggested it's my MTHFR gene mutation, something to do with methylation/metabolism), but I've had all those things (except Brady - have only experienced this once or twice) before starting the meds. I've been pushing for LDN as my next medication trial, but I'm not seeing any significant change good or bad from the Traz. Sleeping the same as I was on melatonin most nights. Hoping we're both able to find some relief. 

[yogini]

Everything you described is fairly common including waking up from a dream to  have all of those symptoms and more in the middle of the night. You mentioned an echo - make sure you get a full cardiac workup - stress test ECG, etc.  Through these tests your cardiologist can tell you if you are at risk for a heart attack and when to go to the ER.  Most of us who have been cleared have been told there is no need to go.  

CBD can lower your blood pressure.  Have you checked with your dr whether it makes sense for you? Are you measuring your blood pressure and HR when these symptoms happen?   Drink water + salt at night and first thing in the morning  has helped me deal with the morning symptoms caused by low blood pressure and dehydration in the morning.  

Hope you feel better soon.

[MTRJ75]

Thank you Yogini. 

My BP was 115/76 during this episode last night. It used to run a bit high, then became a bit of a roller coaster when the dysautonomia hit. Perhaps the CBD oil (along with low dose beta blocker) got that under control. 

I asked my primary about CBD when I first started with it and his exact response was "I don't deal with the pot". My neuro is all for it though. 

My routine upon waking starts with an electrolyte drink and then holding off on the sodium chloride tablet till afternoon now. I make sure to get a lot of quality salt in my diet too. 

I probably should have been more clear that this occurred upon waking up mid-dream in the middle of the night this time. That's not often how or when these symptoms hit me. They're worse after waking at my normal time most mornings or following (but not usually during) any prolonged, even slight physical exertion. Like the worse of it will generally wait until I sit back down and try to relax to hit me. 

Forgot to mention that previous cardiac work sometimes comes back okay, sometimes things are a little off, but not enough to cause any concern or further investigation. The worst thing I had to go through was catherization for suspected Pulmonary Hypertension. The cardiologist is probably saving her own skin by never giving me a clear answer when I ask when I need to go to the ER. The answer is always "if you feel poorly enough". 

[Clb75]

Neuropathy, (tingling and burning)along with dysautonomia are very common in sjogren’s, have you tried discussing your symptoms with a rheumatologist? 

[MTRJ75]

Yes. I first went to a rheumy about five years ago. He said I didn't show up for anything on blood work. I can't help  you. 

Went to another one at Rutgers last year. on the advice of cardiologist and neuro. He basically told me the same thing after extensive bloodwork. Said I can be treated symptomatically for Sjogren's, but there's absolutely no reason for me to be seeing a rheumy at this point. Both the cardiologist and neurologist were quite frustrated by this to say the least. 

So both said there's nothing to treat without bloodwork, although the eye doctor has run positive Schirmer's tests (for eye dryness). 

I'm absolutely positive there's a dysautonomia/Sjogren's connection in my case because the drier my throat/esophagus got, the worse the autonomic symptoms got, so one is certainly often triggering the other. I just can't find a doctor who understands how to handle this. 

[Pistol]

@MTRJ75 - what you describe and the fact it happens when waking is what I experienced recently when I was going through a sudden flare. In my case it was allergies causing dumping of histamine which dilates the blood vessels and therefore lowers BP. I fainted quite a lot in those weeks. I also experienced diarrhea and GI issues. It got better when I started antihistamine and Zantac. —- You mentioned Sjogrens - I had an episode of dry eyes and mouth and swollen parotid glands recently and saw a rheumo. He did all the blood work and everything except for the ESR was normal, so there is no reason to believe it is anything autoimmune, and definitely not Sjogrens, thank god! So I am just wondering if your symptoms could be caused by histamine like with me? The only allergy symptoms I have are stuffy/ runny nose, occ sneezing and frequent ear infections, I was not even aware that this was due to allergies b/c the symptoms were mild and mostly happened at night. Since starting Claritin I do not have the nighttime symptoms any longer and have not fainted, so it is helping.

[MTRJ75]

Thanks Pistol. I've had really rough environmental allergies for around 20 years. I tried the claritin thing to no avail for about six months a couple of years ago. I've brought up Mast Cell Activation Syndrome with a couple of doctors and nobody seems to think anything of it. They do say that antihistamines could make the Sjogren's symptoms worse. 

As I understand it, bloodwork for Sjogren's can show up 10 years before any symptoms, 20 years after, or not at all, so it's kind of frustrating that Rheumys sill treat only via bloodwork and don't do a more complex investigation when there's obviously something going on. I guess I shouldn't speak for all of them though. 

[lieze]

Yes I just went through a couple months of experiencing the same thing when I would wake up. I started keeping food water and Gatorade by my bed. I usually drink and eat before I try to get up. I also increased the amount of water I was drinking and that seemed to help. 

[MTRJ75]

Thanks Lieze. I always keep water by the bed, but with the Sjogren's, that's not nearly enough to help immediately. And although I wouldn't always call it nausea, I'll also blame the dryness for not being able to eat for at least an hour after waking. Having ready some kind of drink with electrolytes already in it ready throughout the night is a great idea though. 

[lieze]

I keep a banana by my bed eat a few bites of that when I first wake up.

[MTRJ75]

Ugh. So this originally posted episode was Monday night into Tuesday. Things were pretty stable (or as stable as they get these days) Wed-Fri. 

Saw the neuro Thursday. We decided to stop my nightly Trazodone (last one Wed night) and start with Buproprion (took first one Sat morn - yesterday). 

The last two days (Saturday/Sunday) have been horrific, especially in the morning. Severe pain and all of the symptoms from the original post, though I'm at least sleeping most of the night. Normally, this stuff gets better after an hour or two awake, but yesterday I was just really nauseous and felt like there was a heat lamp on me all day. Today, the pain/trembling/sweating thing is pretty ferocious and the heart pounding comes and goes. And I'm supposed to go for a endoscopy Tuesday morning without taking any of my medications somehow. 

Is Buproprion a medication anyone has any experience with? Wondering if I should ride it out for a few days or call the neuro again tomorrow, although I have no idea what else he'd be able to offer immediately. Both medications appear to be anti-depressants, but I wonder why he'd have me take one at night, but the other in the morning. 

At least the PVCs haven't been around for over a week now. 

[Pistol]

@MTRJ75 -buboprion is often well tolerated by POTS patients and helps with many of our symptoms. I myself take Escitaloprm but my sister, who also has POTS takes Bupboprion and does very well on it. We are all different but I have learned to giv any new meds a chance. We are so sensitive - often our bodies need time to adjust to medication changes. 

  

[MTRJ75]

Thank you Pistol. That's encouraging. I hope this weekend is all due to the medication switch and will resolve fairly soon. 

[Random-Symptom Man]

@MTRJ75 my doc tells me to always titrate up to a clinical dose on any med. Same when I come off a drug. My nervous system can't handle rapid chemisrty shifts. I have no experience with buboprion. Is there a way to step down? Is it safe or effective at a half dose?

[MTRJ75]

I asked about that. He said I could just stop the Trazodone because I was on the lowest dose (50 mg), without issues. I'm starting Buproprion at 75 mg in the morning and he told me to wait a week or so and then increase to twice a day if it's helping and if needed. 

[Pistol]

@MTRJ75 that sounds like a very reasonable approach, it is not a very high dose to start with. Your problems could also be caused by the simple fact that you are stopping one med and starting another at the same time. Just give it some time and be aware of what is going on with your body. In my case it often gets better after a while, but there were times I had to stop a med because I could not tolerate it at all. Trial and Error is unfortunately the way for most of us. 

[gnnmi]

MTRJ75,

I was happy to find your post because I experience very similar symptoms when I wake--strange squeezing feelings in my torso especially but also down the arms and legs, extreme sweating (I often have to change my nightclothes twice a night), elevated heart rate, often followed by muscle cramps in my legs or feet and anxiety, then comes the burning and buzzing.  It does not wake me up; rather, it begins seconds after I wake up as soon as I move even a little..  I usually wake up twice before I want to get up, and the squeezing, burning, etc. only happen when I wake up for the last time. The other times I experience mostly heavy sweating only.

To some extent I have these feelings during the day also, but mitigated. 

I bought a foam wedge that goes under the entire mattress and elevates the head of the bed by about five inches. Since installing it, the morning nausea and dizziness have disappeared almost completely. It is the only thing I can offer that may help you, but it's nice not to have those particular feelings any more. I had lost so much weight I was worried but it has evened off since I elevated the bed.

 I have also been diagnosed with Lyme disease and hope that is not the case for you. I do wonder if these horrible symptoms are related to the Lyme more than the POTS for me, not sure. 

I take Doxepin for sleep and recently upped the dose from 10 mg. to 25 mg. It takes the edge off, sort of. My neurologist prescribed it at my request and said she wants me to see a sleep specialist also before raising it. Otherwise I do not take any medication for POTS. 

Gnnmi

[MTRJ75]

I'm sorry you're dealing with this too @gnnmi. It's certainly no fun when you wonder whether or not you need immediate medical attention most mornings. I'm glad you've found some way to counter some of it. I have an adjustable bed, which I've raised slightly in the past for other reasons, but never found much benefit towards these particular issues (or anything else really). 

I went to a functional medicine group, who did a lot of testing that conventional doctors don't normally do. They came back and told me that I don't particularly show for Lyme's, but do have a couple of co-infections that are very common. In fact, they say they rarely see people without any of these in this area of the country (Northeast). 

[Rena]

Hello MTRJ75 , 

My name is Rena, I went through all those symptoms in April and May when I get like that I cant eat cause palpitations worsen right after I eat, and I cant even stand going to the bathroom. And no doctor could tell me what it was just Anxiety and panic attacks is what they all told me. Recently it all went away and now I was having short term memory problems and itchy skin. Nothings there, no rashes etc. Feels like it's under the skin. If they ever tell you what it is let me know. Thank you. 

I have not been diagnosed with POTS or dysatanomia  cause the docs dont even have studies for that here or I dont even think they believe in it... but I have all the books on it and it seems 5o me I do have at least Dysatanomia. 

[Pistol]

Dear @Rena - if you suspect that you are suffering from one of the dysautonomias and you do not feel cared for properly by the physicians you are currently seeing you may want to consider a specialist in the field. Our physicians list provides SOME contacts for physicians specialized in autonomic disorders.  Often they are cardiologists or neurologists. You can also contact your insurance and ask for a referral contact for autonomic disorders that is on your plan. 

[MTRJ75]

6 hours ago, Rena said:

Hello MTRJ75 , 

My name is Rena, I went through all those symptoms in April and May when I get like that I cant eat cause palpitations worsen right after I eat, and I cant even stand going to the bathroom. And no doctor could tell me what it was just Anxiety and panic attacks is what they all told me. Recently it all went away and now I was having short term memory problems and itchy skin. Nothings there, no rashes etc. Feels like it's under the skin. If they ever tell you what it is let me know. Thank you. 

I have not been diagnosed with POTS or dysatanomia  cause the docs dont even have studies for that here or I dont even think they believe in it... but I have all the books on it and it seems 5o me I do have at least Dysatanomia. 

I'm sorry you're dealing with this too. It's amazing how much our symptoms flip flop and change. I was having skipped beats all the time and they've gone away for the last month. Some of the symptoms from my original post have been absent recently, whether due to medication changes, season or just being cyclical, but now they've been replaced by increased nausea and pain.

Which, of course, makes it so hard to deal with doctors because who knows what will be our worst symptoms by the time we see them. 

I'm not expecting any answers as to what or why any of this is happening any time soon. I've just given into testing different medications until something pops. In the meantime, I'm working on some neural rewiring or whatever aspects might i might be able to control somewhat. 

I'm glad you've improved from some of these symptoms. Hope you can find relief from additional ones. 

 

[MTRJ75]

I guess I spoke too soon in my last post just above because the symptoms in the original post up top came back with a vengeance last night, first time since I'd started on Lexapro about three weeks ago. I'd felt my heart was pounding more than usual all day long and found it really hard to get comfortable. Just sitting there, watching TV around 10pm, my body started heating up, drenched in sweat, gastric emptying, some nausea, internal trembling, arm ache. You know, all your classic heart attack symptoms (again). Tried to keep my calm. It eventually went away, but then all came back around again a second and third time, eventually turning into panic, as it was just me and the dog and I didn't have a car last night. Really thought I was done a couple of times, but refused to call an ambulance because what would happen with my dog would stress me out even more. 

Was eventually able to lie down and sleep. I can feel the same kind of heart pounding and intermittent chest pain (nothing new though) today. A couple of times I've felt my body start to heat up, but not nearly as bad as last night yet. Just trying to remain calm and cope. Looking for some sort of distraction. Amazing how some of these symptoms can so rapidly come and go. From hour to hour or not show up for weeks or months at a time. Not a fun way to exist. 

[Amyschi]

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.