Does Anyone Else Have Some Very Bizarre Symptoms ?

[Troy]

Since I was diagnosed with POTS and Autonomic Neuropathy 9 years ago I have been having the usual symptoms as everyone else but I have also been having a lot of unexplained bizarre symptoms that have me puzzled and concerned, I was hoping you guys can clarify or compare with yourselves and tell me if its normal......

1- The crown area of my head gets very hot during the day and requires constant wetting and cooling but at night time the exact same area gets very cold. So cold that I have to constantly wear a head warmer (beanie) to be able to just sleep. As soon as my beanie comes off during the night I immediately wake up with a runny nose due to the uncomfortable icy spot on my crown area. How can I experience two opposite extremes as such ?

2- When I walk my feet and hands become very hot and I find that I have to sit and take my shoes off during walks due to the uncomfortable burning sensation to let my feet cool down but when I'm usually sitting at home my feet are always extremely icy cold.

3- When I experience adverse reactions to drugs, medications, food, or when I get excited, aroused, angry or take part in sexual activity I develop hyperthermia or high fevers and my neck becomes painful, crackling and stiff.

4- My body rejects all substances that act on my autonomic system such as caffeine, alcohol, sedatives, anelgesics, opiates, stimulants, SSRI's

5- Since the Dysautonomia there have been unexplained deterioration in my muscles and joints causing torn ligaments and cartilage, can Dysautonomia attack the muscles and joints ?

6- When I sleep I wake up many times to find myself in contorted positions due to aching and restless leg syndrome and I also find my neck and jaw locked up and I wake up many times throughout the night subconsciously clicking and cracking my neck and jaw to release the tension and go back to sleep.

7- I have rapid shifts in autonomic functions where one day I'm drinking fizzy soda drinks to help the bloating and digest the food I ate and a few hours later I am drinking anti-acids to slow the digestion process and control the acid reflux, everything seems to shift from one extreme to the other, from hot to cold, from rapid gut motility to abnormally slow, from hypertension to hypotension, from bradycardia to rapid hearts rates, there is no normal or balance.

[janiedelite]

I totally relate to #2, but also to #6 and #7.

[Troy]

Thank you so much, your response means a lot because those unexplained symptoms add to the frustration and now knowing that some of it it is shared by others who have Dysautonomia has made me feel at ease, so #2, #6 and #7 are covered , anyone else have the others ?

[Broken_Shell]

Hi Endure,

I also have a long list of "bizzare" symptoms... I don't even know how to describe some of the things I feel without sounding like a crazy person... Anyways, my thoughts are that when your basic systems are autonomically out-of-whack, then pretty much any symptom goes. I think sometimes that we feel different symptoms because all of our bodies react differently, even if we have the same sorts of blood flow or autonomic neuro-regulation problems going on.

Here is what I can relate with from your post...

#1. Not my head, but I go through periods where I keep waking at night with one foot painfully freezing cold.

#2. My hands and feet are usually either purple, bordering on black and freezing or lobster red and burning hot, especially when my other symptoms are flared up.

#4. Absolutely! My body (not I) over-reacts to everything.

#6. I have a lot of muscular and fascial issues with my neck and jaw.

#7. Yes - everything can shift from one extreme to another or one symptom to another within minutes and there is no rhyme or reason or way to help it.

Thank you for sharing.

~ Broken_Shell

[joy]

I have burning sensations in my feet and have temperature skin changes, but I've always chalked it up to my RND.

RND for me causes constant freezing feet and ankles, color changes, and overall skin temperature changes from freezing to hot esp on afflicted areas.

I'm not sure what could also now possibly be my AD

I'd bring this up with your doctor, possibly more than one, and see if he thinks it is something more than what you've already been diagnosed as. You may have a third issue, or maybe just some more rare symptoms.

[Janey]

I get 3,4,5 and 7. I get 5 though because I have Ehlers Danlos Syndrome. Have you been checked for this?

[erickamcc0523]

1- Not so much my head, but around my stomach and under my breasts, especially, I radiate alot of heat, which isn't a horrible thing because it can warm up my hands pretty quickly (thank God for baggy sweaters!). Perhaps, with your body slowing down at night to enter sleep, the reduced blood flow is causing it to become very cold? I'm not sure, but at night my hot spots are pretty cold usually.

2- Yes!! And I also have excessive sweating when they get like that, too, which is strange because I normally don't sweat too much (except my underarms, but that's another thread). I have been meaning to buy some neoprine sock liners to wear in addition to my socks to hopefully wick away some of the moisture, because that seems to exaserbate the problems.

3 & 4-I become a heat making machine when I am stimulated in any way! I would love to get in front of a thermal camera when I'm like that just to see the changes. My neck is always like that, though, but I think that's because of the hypermobility syndrome (and suspected EDS).

5-I don't think that Dysautonomia itself can attack muscles and joints, but if the dysautonomia is caused by something like EDS or another hypermobility syndrome, then the deteriorating joints and ligaments could be a cause of that. Ditto to Janey, especially if you have hypermobile joints, you should be checked for EDS.

6- Last night, I ended up laying across my bed, with my legs all splayed out... I was halfway on my side (my upper body) and on my back (lower body). I also grind my teeth in my sleep, which causes alot of jaw and neck tension. Perhaps you should be checked out for nocturnal bruxism, and even be fitted for a mouth guard to help with the symptoms. I have woken up from grinding my teeth so much that it's dislocated. Doesn't hurt so much, more uncomfortable than anything, but it's annoying to have to wake up to reduce that dislocation. The tension in my jaw muscles will go down to my neck muscles, and sometimes even into my shoulders, causing HUGE knots. When my dentist was examining me for TMJ, there was a spot on the right side of my neck that he touched that nearly brought me out of the chair.

7- Again, the same thing here... Mine is normally more present with my colon, either I'm constipated or I have severe diarhea... but there are times that everything I eat feels like it's just sitting on my stomach, sometimes for hours afterwards, and I hardly eat. Then other times, I can't keep myself fed enough, and I have to eat all day just to keep my blood sugar up (I get reactive hypoglycemia at times, too). Luckily my blood preassure is normally about the same (with only a 10 point difference either way in the top number and a 5 point either way in the bottom number), but I will get either bradycardic (especially since I've been put on a beta-blocker) or tachycardic. Again, like with you, it feels like there is no balance at all, and my body is subject to my autonomic system's whims!

[erikainorlando]

Although I pretty much just have the standard POTS stuff, I agree with BorkenShell in that the autonomic nervous system touches many areas of our body and we can pretty much bet on many strange symptoms!! If I remember correctly you have dysautonomia resulting from a drug overdose which makes yours a slightly more unique situation.

I had Guillain Barre before I had POTS...I am sure there is a bit of uniqueness to mine as well..probably unique for all of us but yours stands out..I would research dysautonomia resulting from drug overdoeses ... I am sure you have but keep looking.

Hang in there.

Erika

[Broken_Shell]

Although I pretty much just have the standard POTS stuff, I agree with BorkenShell in that the autonomic nervous system touches many areas of our body and we can pretty much bet on many strange symptoms!! If I remember correctly you have dysautonomia resulting from a drug overdose which makes yours a slightly more unique situation.

I had Guillain Barre before I had POTS...I am sure there is a bit of uniqueness to mine as well..probably unique for all of us but yours stands out..I would research dysautonomia resulting from drug overdoeses ... I am sure you have but keep looking.

Hang in there.

Erika

Endure,

Curious - what drug caused your dysautonomia?

~ Broken_Shell

[Troy]

Thank you so much everyone, you guys have shared some very useful information. I do infact have hypermobility as mentioned and I had never even considered Ehlers Danlos Syndrome but it would be worth getting checked for that too seeng as it is a possibilty.

Broken_Shell, this is something I am emberassed about because it was big mistake on my part but before I developed Dysautonomia I was heavily into the rave scene and dance party's, I used to take ecstacy and amphetamines to help me dance all night sometimes up to 8 hours, I was lost in the world of partying and drugs until I had a drug overdose one day that damaged my Autonomic System and then my life was changed overnight, it was huge wake up call.