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Viruses and POTS


Guest Julia59
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Guest Julia59

Hi Folks----------------oh what fun it is..........the fever, the tachy, the shaking, the pain----ohhhhh the pain.

Anyway----more of a venting of sorts. I started getting this raspy voice on Friday---then I felt irritation in the very upper chest---then later a fullness in my back----but hard to tell if that is my spinal issues.

I had my cardiac loop recorder downloaded on Friday. The RN who does this said I have a high heart rate most of the time---even on the beta blockers. I'm trying to figure out how to handle this. He said it wasn't horribly high, but it is high even in my sleep. My BP has been running really low---and i'm not sure if I should increase the beta blockers. Maybe a little midodrine or florinef-----------hmmmmmmmmmm

I have never been prescribed this---I think because I have been diagnosed with hyper-adrengic POTS-----ALTOUGH, I have never had my catecholamines tested the whole five years I have gone to Dr. Grubb.

Ever since I stretched that one day a couple months ago---and popped something in my upper thoracic spine---I have not been the same. I'm telling you, I have never been in so much pain. It feels like my back is splitting open--I can berely sit up. It is so taxing just to have company over. Every joint in my body hurts---even my fingers. Sometimes i'll reach my hand back and press on the side of my second vertebrae on my thoracic spine to relieve the pain, for some reason this helps a little. Well, when I do this my shoulder pops in and out just from pressing down. This must be the EDS-----it really feels like it's getting out of control, and I can't figure out why it would be happening all at once. It almost feels like my collagen is melting------it really does.

I need a physician to take me under his/her wing and just help me----like I said it is difficult to sit up. I end up hunched way over because if I sit up straight, it is such a strain---and causes so much pain. My legs shake and are so weak-----they wobble like when a puppy first starts walking. When I press the gas peddle on my car my leg shakes, and it feels odd, like I don't have full control, but yet I do. UGGGG---I don't know how to explain this.

Have any of you gotten over bronchitis without taking antibiotics? I just can't handle one more thing going wrong, and if I take antibiotics--my POTS WILL get worse. My husband said robitussin DM is now "non-drowsy" formula. What have they done! That is the only medicine I can tolerate for chest congestion. Must everyone in the general population be wound up like a teenager on mountain dew? Only if they knew how much we wish we could be one of them---and actually enjoy a little stimulus to get us going. What I would do for a coke........but I wouldn't dare..... :)

I can't help but think Dr. Heffez is right on when he diagnosed the myelopathy. But i'm not sure if it's caused from the spine compression----he said it was, but I don't know what to think as my whole system is a wreck. I sometimes want to just shut down.

Mentally I am doing better----I have come to terms with a lot of personal problems, and I am now taking control of them---other then them controlling me. I have opened up more to my therapist.....I was afraid to at first, because I wasn't sure I could handle the stress of dredging up the old demons. This may be taking somewhat of a toll on me physically-------so i've been laying low---hanging around the house. I figure if I want company---they can come and see me for a change. That's just the way it's going to be----I don't give a rats ho-ha what anyone thinks. My loyalty is with my POTS/chiari/dysautonomia friends---that's it for now. Not that I don't feel loyal to my healthy friends, I just don't think they understand that I just can't spring into action and just go out clubbing, movies, dinner ect.

This is getting long---I just hope I can lick this upper chest issue without any meds. Tonight I made dinner---so I was standing for a while---and what a mistake. I could not eat much of my food, and was way to weak to eat the salad. My husband had to help me clean up the mess, I was pretty useless. I put ice on my upper spine and neck---and now I feel somewhat better in my back, but still weak, and not much of an appetite. Did you ever get a charlie horse pain in your leg?---well that is what if feels like in my spine.

Then this bloody nose----and such sore ---full feeling ears. At one point mastoiditis was mentioned by the radiologist on my brain MRI report----no one has ever looked into this. If Dr. Bolognese at the chiari institute is right---and I do have cranial settling along with the instability at the cranial/cervical junction----I'm guessing this could cause problems with my ears.

I'm just so disgusted. That guy I mentioned to all of you earlier----he's 40 and has POTS with high blood pressure, enlarged aorta and heart, all kind of bad results on blood work showing he can throw clots, bad liver function, and heart damage, and the Cleveland Clinic can't help him. He has acute emergency situations---and they sent him home. I just can't get a grip on how insane this is. Today I called him---and there is no answer---I hope he is OK. He does have a male nurse friend that looks in on him---he gave him my ph#---so if there is a problem he will let me know.

I'm just so disgusted I don't want to see any doctor. This week I see my new PCP----I'm really ready if she gives me a problem---or is dismissive of my problems. I will remain calm----but I will let her know just what I think---I will not hold back. She will get a quick education on how to NOT TO BE DISMISSIVE.

I want some quality of life back---and I want you all to have it to----especially that 40 year old man I talked about.

Julie :0)

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Julie,

I'm so sorry you are feeling so rotten!!!! I don't have any great words of wisdom but I would think if the bronchitis is bacterial infection you would have to have an antibiodic...I certainly don't know that for sure though.

Hang in there and I'm sending you a big ((((HUG)))

I can relate to your pain issues but I haven't found anything that helps me either. I just keep trying to do gentle stretching and isometric. Have they ruled out connective tissue disorders in your case?

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i got bronchitis few weeks ago, and thank GOd it wasnt bacterial because i cannot tolerate any antibiotics, but it took forever to go away, and trying to cough up that phlegm was just misery!! like i said in my post to help the flu, ther herb mullein is great for cough and to break up congestion and so is osha and slippery elm bark, hope you get some relief soon, i know what you are going thru!!

radha

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Guest Julia59

Thanks -----------for sending support-------- :angry:

I'll see the new PCP Thursday---if she thinks I have a problem---hopefully she can help me.

I do have EDS------------- and it's affecting me a great deal I think---but can't be positive.

I'm hanging in there----and trying to keep a positive attitude.

Big hugs to both of you------------ :)

Julie :0)

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julie -

good luck with your new doc on thursday. i know how stressful it can be & will keep my fingers crossed for you...

:D melissa

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