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CAn you believe it!!


dizzygirl
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hey there folks..

well I had been feeling half ways decent last week.. with the pump up of IV fluids... and combo of antibiotics.. well Monday I started feeling sick again.. POTSY and otherwise.. I was like well that was nice while it lasted..to be mildly function for 5 days in a row!! what a treat!!

Well low and behold tuesday my thorat starts huritng once again.. and my ears hurt so badly that I could scream!!!

Went to the doc today.. and i have streph throat again!! and my ears are quite infected.. there is alot offluid in there.. the gladns in my neck are swollen.. and moving my head is a real treat.. let me tell ya!

my PCP thinks that the aniobiotic I was on before just wasnt strong enough.. so she gave me a tronger antibiotic to hopefully knock it out of me for good.. as well as some mucinex.. mucinex works well for me.. took it when I had pneumonia and it worked well..

also might have to take a trip to an ENT again.. to see about possibly putting tubes in my ears once again.. b/c of all the fluid. my ears always hurt.. and there is always fluid behind my ear when I go to the doc.. never fails..

Also.. they are going to try and work it out so that i can get IV treatments at home --hopefully weekly atleast.. doc said its going to be diffuclut to get this done.. b/c on paper my levels dont show that i am "technically dehydrated" even though I am-- doc knows this too.. and said she is going to call dr.g on this one..

and too they are working on getting PT to come to the house..

I am hoping that i can get over this streph throat completely.. and that I start feeling better on that front.. the POTS is bad as it is.. infection doesnt make for a nice combo deal :rolleyes::(:D

makes me dizzier then I allready am :blink::blink::blink:;);):blink:

Edited by dizzygirl
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Ugh, as if having POTS alone isn't enough of a bother...I am still dealing with my 2nd viral infection, I wish there was some pill out there to help. Do you wake up in the AM and feel really bad. When i wake up it feels like there is a rubber band around my throat and my ears feel like they are ready to pop. :) I can't even sleep at night because my throat is soooo itchy. YES, itchy!!! Coughing doesn't help, water helps for about 2 minutes, cough drops don't do a thing....

Don't forget to keep hydrated. I know when I have a sore throat I hate to drink anything, because it is soo painful. Hope you feel better with the meds!

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Hi suzanne welcome!!.. I have had tubes in my ears twice.. once when I was 5 and then again when i was 9.. I have always gotten horrendous ear infection.. when i was 9. the tube in my left ear.. oh it was bad.. I got a severe ear infection.. and the tube got lodged in my ear (b/c of the infection).. and I had to go to an ENT.. and they had to surgically removed the tube from my ear.. while I was awake.. my mother said that i got so white that she thought I was going to pass out..it was painful.. I lost alot of me hearing then at 9.. they then a short while later put tubes in the old ears again.. and i reacted bad to the anestias (SP???)..

But with the infections that i am getting nostopin the ears.. I'm willing to have tubes in again.. anyhting to get some relief.. and my the ENT who did the proceddures still is in town.. so I should call him!

jacquie I hope that you feel better soon too!

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Yeah I can relate about having the tube removed...PAINFUL!!! I had a tube put in my left ear, then a few weeks later I began having disequilibrium probs, so they took it out. They said that it wasn't caused by the tube, but I wonder...hmmm.......My ENT suspects that I have Otosclerosis. Since I was a baby I have had chronic ear infections, so I have alot of scar tissue in my ears....Just curious after reading about standing on your head, LOL can too much blood to your brain be bad???? Just curious!

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I just wanted to let you know that I am able to get home Iv fluids and I am never "technically dehydrated"

Dr Grubb understands how POTS effects this part and I think would be very willing to help.

Also I got a Home Health facility to do it not visiting nurses b/c they are the ones who seem to give the hardest time.

I am not sure what Part of the country you are in but Chartwell is who I use and I know they are in quite a few places.

I really hope you can get the fluids at home. I know for me it makes my life a million times easier and I am, so much more functional as well as able to tolerate being sick easier.

Ihope you feel better soon :)

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Jenn- i live in Northwestern PA..part of the concerna nd debate going on about em getting regular IV done.. is the risk of infection.. like with a porta cath.. or they damage that can be done to the veins with repetative IV useage...Dr.is afraid of what an infection such as one that can occur w/ port acath would do to me.. sicne I am allready so sick.. they dont want to risk me getting "more" sicker.. but I am really pushing thsi issue now.. b/c IV fluid is the ONLY thing that has helped me even alittle bit.. and I am going to take every little bit that I can get.. so ireally just pushed it today. and NO is not acceptable.. and the insurance company better not give me any crap either!! geez.. I want my life back!!

doc said that today that the insurance company is going to want to know why I cant just drink 1000CC of fluid everyday.. and I am like I allready drink over 1000CC of fluid a day and then some.. and it just doesn not cut it.. no matter how much I drink.. i can never quinch that thirst.. you should see the water bottles that have accumulated on the bedside stand!! WOW!!

in aperfect world I wouldnt have to fight with insurance companies to pay for treatment of any kind.. and in aperfect world I wouldnt have Pots either!.. but this isnt a perfect worl and I do have POTS.. and I need the IV's!!

Ok rant over..

Edited by dizzygirl
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Hey Dizz,

I'm sorry your feeling bad again..but I'm glad to hear your doc. is working with you for the IV home treatments.

You said it's going to be hard to get insurance approval and I was wondering if you've ever had a blood volume test (I can't remember if you have or not)...maybe if you're doc. could show that you have low blood volume they'd approve the IV as an inexpensive treatment for that as opposed to dehydration?...I think the fluids help blood volume..I could be wrong.

I hope you feel better soon! :)

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wareagle.... i tried to have a hymodynamic blood vloume test.. done at the clevelnad clinic with dr fouad in 2003.. but. ((BIG SURPRISE HERE))).. they could not gain proper IV access. so they were only able to do the TTT.. Um they tried for 45 minutes if not longer to get vein access.. and in the end only ended up putting atiny IV in.. as a just in case for the TTT.. I have always been a hard one to get IV's into..

But I want to try and get another app set up for an other test at cleveland and hope that they can gain proper access.. i think that it would prove to be helpful..

and yes I think that fluids help blood volume too :)

thanks gals for the support

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Guest Julia59

Uggggggg----Linda---I'm so sorry your sick AGAIN! You have had enough----time to get a break.

Have you ever had the ENT send the fluid from your ears to pathology to have it tested to see if there is CSF (cerebral spinal fluid) fluid in there? I know you have some issues at your cervical/cranial area.

George Clooney had it coming out his nose---he had an injury to the dura covering to his spine. He will probably always have to be watched---and he will also probably need repeat surgeries, as patching the dura is difficult to get perfect, and it can tear again.

I just want to make sure all avenues are covered. I know some people with chiari, and chiari like conditions have had CSF come out in both the ears and the nose.

It sounds more likely that it's related to your streph----but it probably wouldn't hurt to have that checked out.

I hope you feel better soon----enough is enough.

Hang in there.

HUGS,

Julie :0)

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UGH!! i majorly feel like POO today.. and cant wait for antiobiotics to work!! its making my pots symptoms drive me more batty then usual :(.. and makes for a very grumpy and irritated dizygirl :) my poor boyfriend!! :o:ph34r::ph34r::ph34r:

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Linda

Sorry to hear you are going through round two on top of having this condition. My daughter just went through the same thing round two on top of this condition. She was better for a bit. Then she hurt her foot at dance. Then she got a sinus infection! I really hope you are feeling better soon...so you can have some more good days! Take Care! Renee

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