dizzygirl

Hi folks I've been searching around for neurologist who is familiar ith treating periodic paralysis... and possibly handling the sleep paralysis as well.. as there are a few diff. things going on. I've spoken with my local neuro w/ no luck...(i think I very well have seen allt the neurologist in this town.. for my pots.. and there are just like.. sorry cant help you!) I talked to my local cardio guy.. and he said I'm more then likely going to have to go out of town for this as..this isnt seen.. and no one here at home is going to be able to treat this.. So I sending out some feelers to you all in hopes that you know of a neuro in the USA who treats this and will be willing to treat me...traveling.. I'm willing to do.. this paralysis junk is for the birds.. I had a severe one this morning. and am at my witts end.. as its so very painful.. and recovering from it takes longer and longer.. thanks

WHEW!!!!!!!! thank goodness that insurance isnt going to make things harder then they allready are! and that things got approved and everything.. I wish you the best of luck miss sunnyfish... take care of yourself dear.. and let us know how things went when YOU are truly feeling up to it.. maybe give the laptap a mini vacation while you are in the hospital... we all know how deicated that you are to us and the forum.. but take some time for you dearie!! BIG HUGS linda

yeah in the er and docs office back before we nknew i had pots.. they would make me cough to try and break the svt and stuff like that.. for me it never really worked.... my pcp at the time told me that sometimes it can stop tachycardia or arrythmia's.. i also gett he urges to cough w/ tachy.. and i cough and cough at times.. though there is no cold or anything present.

WOW melissa I will say a prayer and cross my fingers and toes that insurance goes thru with this treatment for you.. I certainly hope that they do approve this... good luck dear and please let us know how things turn out! BIG HUGS linda

you said it sophia!

WOW! thanks folks for the reply's.. I was just wondering about all that.. and figured it would be best to post on here and get info from you all verse calling the ssdi office b/c i ddint want a record of that call in ym file for obvious reasons. I dont think I want to jepardize my benefits.. as I not able to go out and work a full 40 hour a week job.. I have not worked full time in ver 5 years.. and part time in over4 yrs. My thoughts went to working from home only a few hours aweek or something like that,, where i could be fllexible.. but even that sounds like playing with fire.. oh my! I was on ssi all thru childhood till i was 18.. and i can say that there is a differenc in regards to additional monies that you bring in aside from ssi.. i worked full and part time on ssi up until i was 18.. then i was booted off ssi.. tried wroking but that didnt go real well.. and now i'm on ssdi.. but bopy did i have to fight for it. its a shame that benefits are so meager... its so below the poverty line its not even funny.. Where is a rich night in shinnning armor when you need him eh?? to ride up on a white horse and sweep you off your feet... ((((sigh)))) only in fairytale land!! lol.. oh well time for more penny pinching!

hey folks.. I'm wondering are you able to wrok part time while being on SSI/SSDI? I under stand that we are on disability for ther easons being that we are "termed " unable to work... But I dont know about anybody else but my sole income is disabilty.. and it is very very hard to live off such a small amount of income every month... though I'm extremely greatful..b/c i've been in the boat where there was no moola coming in! I'm thinking of something part time from home that i can do in my own time space andframe.. when I'm feeling lucid enough to do it.. I as going to school for medical transcription.. But back to my question.. does anybody know the approximate hours you can work or money you can earn before if is/does affect you benefits? there is no way on gods green earth that i could go out a work an actually have to be there 9-5 kind of thing... its not that i'm not reliable.. but my pots isnt reliable.... and truthfull i could not handle the demand of having to get here then staying there and trying to interact withpeople when i'm feeling sicker then a dog.. or cant see or think straight.. or heaven forbid.. pass out cold! or paralyse! working from home would be ideal.. i could ware my pj's and not even brush my hair if i dont feel like it! lol.. thanks a bunch

yes everyone did such a lovely job on the things that where donated.. and thanks to all of you who bid and ran the auction..! If we have another one.. an auction.. I would be more then happy to donate more stuff..

hi... well its quite hot and humid where i'm at today its roughly 90 degree's outside and very humid and just plain icky . Well I am not sweating like at all.. but I'm am seriously overheated and my hands and feet especially feel as though they are on fire.. I'm very overheated... But at the same time I'm getting the chills really bad.. like internal chills and shaking... and my jaw/chin are shaking like mad.. like i'm frezzing cold.. but am not.. and its making me very very nauseated.. and extremely dizzy.. do you guys get the chills when you are over heated and are not sweating? I had to go out and pick up my bb's. and i almost passed out walking down the sidewalk.. so not cool! I'm about ready to hop in my wheelchair and go down to the lake and jump in to cool down! YUCK I dont like summer!

I have been on medrol pack for my lungs.. and it does help me feel better over all for a short time.. also in November i was on Prendisone.. and boy i felt pretty good for the few days that i was on it... I talked to my pots doc about it the next time i saw him.. and he told me that the majority of people regardless of weather they have pots or not feel better on prendisone b/c its a steroid and it gives your body a boost. I asked him if i could take it as like a regualr daily med for long term use.. Prendisone can NOT be used long term b/c it can destroy your bones. its unfortunate that it cant be taken long term b/c i've heard of it ehlping and for some not helping folks.

WOW!!!!!!!! now i cant say as i have heardthat one before! Now a thought if substance abuse and alcoholism is causing us potsy to be potsy.. wouldnt the majority of american's have our symptoms too!!!!! I mean come on! That is just ludicirise!! absurd and barbaric thinking.. my goodness! When is the medical profession's people going to wake up?? dysautonomia and all that can and does go with it is VERY REAL!!! geesh

have you ever tried provigil? it was given to me to try for fatigue..(its primarily used for narcolepsy patients).. but my pots doc gave it to me b/c they are finding that it can help with disabling fatigue. good luck

WOW!! carmen!! that is very cool!! I instatnly though when i read your post.. of the mom of 3( i think 3 kids..???? ) who wishes came true.. she has a few of her songs on Faith Hills new CD Fireflys.. and they were both on Oprah a few months back.. who knows maybe you will be the next on to be on Oprah! with a famous singer choosing your songs! that is very cool that you are pursuring your dream! YOU GO GIRL!! hugs linda

hi julie as far as yard work goes..(when I ddint live in my aprt building).. I never have been able to handle caring for a yard.. somebody has always had to.. I was fortunate enough that the land lord would mow the yarn during good weather.. and a neighboir guy would rake my yarn free of leaves.. and my boyfriend and dad would shovel me a path to the driveway. I tried shoveling a few winters back.. and it set me off into sever tachy mode.. and i almost fainted.. YUCKY as far as housework goes.. i get done what i can get done when I'm feeling good enought o do it.. when it comes to using cleaning products.. cant do it.. I'm filing for some an aide to come into the house and help with the heavy cleaning. soical outings are few and far between.. and errands.. 90% of the time I need some help there.. BUt I try to do as much as i can.. or that my body will aloow me to do. basically things dont get done very fast if i dont have help getting things done. if you yourself are ahving to fill out a fuinctional report for ssi..be honest on how hard it is for you to get thigns done.. and that you depend help to get the simplest activities of daily living done. and that even if you are able to do them on your own, that you do indeed pay health wise later on for pushing yourself to do it. basically on a day to day basis my functioning is limited.. but i can still do a few things on my own.. like bath.. though not as often as i'd like at times, i can pop a healthy choice meal in the microwave if i have the desire to eat..it depends on the day.. and that will determine how functional i am.. on a really good day.. I try to cook a good meal.. some thing that i can reheat in the microwave for the days that arent so good.. I also on those days can make it out IN my wheelcahir to a counseling appointment or to the grocerystore as long as I am quick in and out. and again am in my chair..but i only get to counseling appointments on the avergae of every 3-6 weeks! and walmart on the avergae of once a week.. and ig o late in afternoon to counseling at in the middle of the night to walmart!

when i went to dr. grubb my cardiologist called him before hand to talk to him.. and then I actually got in quickly to be seen..(they squeezed me in.. but that was over 3 years ago... he see's alot more patients now) I've heard of some getting a referral and some not.. you could call dr. grubb's office and ask if you need one.. I'm not sure about vandy and mayo.. good luck to you dear!

good luck Linda.. ccb are rough on a potsy body... I hope that once you get over inital shock of not having the ccb in your system that you might feel a bit better?? And I hope that your doc has another beta blocker in mind to start you on?? One that might work better for you? hang inthere and feel better! hugs linda

Jacquie.. I'm very glad that you where able to go out last night and have some fun!! I've found that even a few sips of alcohol .. even that.. can set our ans systems off.. we are a "sensitive" bunch of folks! that last time I had even a few sips of a wine cooler.. it did me in and made me feel so yucky!... i think that that in combo with standing.. and maybe all the stimulation from the party... yeah that could very well have set you off into tachy mode. your body was probably in overdrive. I'm sorry that you are feling yucky today.. but am glad that you where able to get out and have something fun to do!! hang in there dear Linda

nope you dont sound crazy to me... i think you need to find an ans specialist.. and get properly evaluated by somebody who is familiar with dysautonomia...i know that that is alot easier said then done.. are you able by chance to travel to see somebody or apply to mayo or vanderbilt? good luck to you I hope that you are able to find a dcotor to treat and properly dx you soon!.. oh yeah folks with dysautonomia are generally intolerant of alcohol.. and it makes them symptomatic.. if you find that alcohol bother you.. stay away from it.. i can totally relate to the 6 and 7 on paralysis. ... have you had a sleep study done by chance??

I was on Inderal (propranolol) for I think roughly a year or so.. and i worked my way up to a very high dose.. the max dose i think.(360mg a day).. while this med helped me for a short time until the dose no longer worked.. dr.grubb put me on Betaxolol in November.. and i must say that it helps me more then any BB that i have ever taken.. I was started on the max(40mg a day) dose which is about equivalent to the dose i was on above with propranolol... Um I havnt noticed any weight gain with betaxolol...but it does make me quite sleepy.. I think it would be worth a shot to try.. I tend to have pretty high hr (over 200) and we have beent rying for years to finda bb that help and works.. and this does.. it keep the hr running between 60-120 for the most part.. also i've found that for a bit after taking the meds that it raises my bp a bit.. good luck hope that it helps you!

Hi.. I was wondering i looked under the symptoms section to see if swelling in the feet was a nromal thing with pots.. for awhile now my feet are swelling up considerably.. like yesterday.. my feet were swollen some.. and they where nice and purple (propped up).. and I was really in need of IV fluids.. I got 1500cc of lfuid ran thur me.. and low and behold!! the swelling went away.. and my feet turned a normal healthy white color.. as did the rest of my body (lips had color!).. I was just wondering if any of you get sweeling in your legs/feet.. and if it goes away "after" IV fluids??? Kind of weird...

mmmm!! self control can be a hard nut to crack!..good luck dear!!! I hope that you start feeling better aftr switching some foods and seeing whst rriggers you to feel yuckster!

HAPPY BIRTHDAY DEAR!!!!!!!! I hope that you had a wondeful b-day!! hugs dizz

hi yup that dazed feeling is a potsy thing.. I get like that alot... maybe you could try drinking or eat something very high in sodium when you feel that way.. and see if that offers any even a teeny tiny bit of relief.. I'm spaced out to some degree daily!..on the bad days I constantly say waht did you say? or HUH? rebecca I do that with the phone thing all the time!! Or one of my personal favorites.. I will get up to go to the kitchen or the another room in the house.. and the minute i stand up to leave the room I totally forget why and waht I was getting up for!! or when I forget how to spell my own name...(lol) that always nice being out some where and they ask for your signature.. and you cant remember how to write your own name.. that gets a alot of puzzled looks let me tell ya! or (sorry i gotta share this too!!) when you find things in odd place.. that arent where they are suppose ot bve!! like the cheese in the silver wear drawer and the cordless phone in the freezer! or the peeper/ or my purse/wallet in the frdige! my goodness well it least it gets a crazy good laugh!! lol so dont wory my dear.. the sapcy feeling is normal part for us potsy folks!

yeah i can realte..(but I'm also a diabetic) but before i knew i had diabetes.. I had a doosey of a time with sugar and carbs.. you could be developing sugar/carb intolerance or something..do you have a history of diabetes in your family? and have you had you sugar levels checked out? just be sure that you glucose levels are too low or too high?? good lcuk hope that you feel better

ME!!!!!!!! more then once too.. i think its a crying same that people are treated differently based on there health insruance coverage or alck there of coverage! I know along time ago my mom was seriously injured.. and taken to a hospital and the first thing they asked is if she had insurance.. she didnt.. and they refused to treat her..she had to be taken to another hospital for treatment.. we where just alking about it the other day.. she was like do you remember....I was like eyah... But i know of some many people who are just brushed off or left to the way side b/c of there insurance.. I know that when I was working and was paying formy own insurance that i got much better treatment..and more things looked into.. verse now.. I've needed an MRI og my neck for several years.. and only after a severe paralyssing epsiode i got one.. not b/c the doc didintwant one done but b/c the insurance company would not pay for it to be done.. i aslo know that recently i had an er visit taht was horrid!!!! and that had that Er dco ordered an mri and done some blood work.. that he would have found what my docs are finding here at home.. but no his big ego and bad haircut!! (dr. mullet) and complete and totaly lack of respect for a soecialsts in the ans field and for the patient was just un called for! Any doc that make aperson sobb is a horse's butt and then some.. I agree with you julie.. it just so sad!