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Guest Belinda

Well Saturday I had a VERY hard time..I am still having a real hard time. I will explain my symptoms to all of you. My back of my neck and down my spine is so tight it feels like I am being paraylized and it hurts. I also am having times of palpitations and chest pains. My jaw and mouth at times feels like they are stiff.My skin is on fire and my nose is stilll burning and throobing and feelinf like it is full of something.

When I went into the ER on Sat. I couldn't feel my hands and feet and they tingled all the way up my legs.

They did the normal EKG's and montired me for a while and then sent me upstairs for POTS and autonomic dysfunction..when I went in there my pulse was in the 130's and my resp. were 30 and oxgen levels were normal. BP was 153/64

Okay so they put me in and had no idea what to do with me they did give me a bit of IV fluids and potassium as mine was slightly low.

They had nothing to offer me becausae they aren't experienced in autonomic dysfunction and let me go last

night. They did try and call DR.Grubb and he was unavailable. I have appt. at 4:30 tommorow with Bev. which will probrably do nothing for me as I don't need drugs I need to know if there is something wlse going on with me. Also my legs and arms are like rubber.

I really don't feel like I am going to make it through this and I am scared. Scared for my kids. If anyone has any advice on how to get these docs to pay attention and any suggestions on what else might be happening please feel free to give your opinions I know noone else is a doc on here just looking for help from others who have been through it..and if anyone ever has ever felt anywhere similar please let me know as it might ease some of my discomfort.

Sorry for the long post but I felt I needed to give a whole picture again I am not looking for medical advice just for opinions.

Hope this finds you all well and thank you for your thoughts and well wishes in julies post.


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You WILL make it through this. Your symptoms do sound like they must be very scary not to mention very uncomfortable. I realize we have little faith in doctors at times, but it is highly unlikely that the hospital would let you go if they felt you had something life-threatening going on.

SO glad you have an appt tomorrow. We are here for you.


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I'm so sorry you're going through this. Just keep reminding yourself that POTS is not fatal. As long as you don't have any other medical conditions that are life-threatening, then you don't need to worry...I say this having had many experiences where I was convinced I was dying, and even wished for it.

I hope that you get seen by a doctor you trust soon, and that things start getting better for you quickly!



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Sorry you are feeling so miserable. Chances are there is nothing serious going on but you do need to have things checked out.

I have all the symptoms you describe, as well as others, except for the nose burning. My symptoms vary in intensity and seem to rotate around from time to time but in my case it's all being caused (to the best of my Dr's knowledge) by the autonomic nervous system

Hang in there. Hope you get to feeling better soon

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Guest Julia59

Wishing you a safe trip to Toledo---and hoping that you have a very sucessful appointment with Bev.---- :D

Keep your chin up--------I'm sorry those folks at the ER/Hospital couldn't help you out.

When you have symptoms that don't feel like the usual POTs symptoms---it's a very scary thing, because you don't know what it could be----it leaves you with a feeling of not knowing weather your coming or going.

I wish I could have been there with you Saturday night to whip some ANS knowledge into some of those folks in the ER and hospital staff.

I'll be praying for you---and praying for some of these Docs to get some common sense------- :rolleyes:


Julie :0)

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BIG HUGS!!! hang in there dear.. something is bound to be figured out eventually..

hang in there!!



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This is just a thought....last year my mother ended up in the ER with the same symptoms...she does not have POTS.

They did an upper GI on her and found her esophagus was consticted. They stretched it out slightly and put her on a stomach medication (Prilosec or Prevacid...I can't remember which one). They said that excess stomach acid will constict the esophagus.

Might be a possibility to look into.

Hope you feel better soon!

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Hey Belinda,

I hope Bev can think of some way to help you out. Hopefully you feel better soon.

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A friend of mine who lives a long way away, had sudden symptoms of dizziness, neck pain and stiffness, vertigo, and more. He doesn't have autonomic dysfunction and they eventually ended up diagnosed with a leak in his cerebral spinal fluid. They did a patch and had him lie head tilted down for some hours and he got better.

His symptoms returned a few weeks later and they repeated the treatment and he slowly got better. He was doing all sorts of good natural things for himself at the same time.

A year later, I visited him and he told me he finally figured out what the trouble had really been about. He had a very chronic sinus problem and it must have spread to his meninges (lining of the brain and spinal cord). One sinus area is deep in the brain. He had a kind of meningitis which gradually was healed.

Because of your ear and nose and throat area symptoms, I hope they have ruled out meningeal irritations. If they haven't, and with your very stiff and sore neck and rubbery legs, you might just ask...

I am sorry you are so scared and miserable. I hope you find relief soon.


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Dont give up now dear! You have gone through so much, you will make it through this. I promise!

I do hope that you can find help from somone, I do know how difficult it is when no one understands what your going through and has little/no experience in your condition. Hopefully, your appt with Bev will go well and they will have some answers for you. Hang in there hun! May your symptoms subside soon and you be feeling better soon! :)

In my thoughts and prayers~


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