dizzygirl

Hi Lisa! Happy New year to you too!! well when i started taking mestinon last yr at this time.. the first few days where really rough for me.. I had alot of the muscle twitching.. and my muscles felt very werid and heavy.. actually the first days of taking Mestinon (I started out at 60 mg. 3 times a day.. ) I was bad off I couldnt get out of bed... BUT.. BIG BUT here.. after I got thru the initial let my body adjust and get used to it... I got a hug surge of energy.. and felt good....that took about 2-3 days before I noticed agood effect of the med.. once the weird muscle thing stopped..i felt some good of the mestinon.. I have noticed.. now that i have a dose age that i can hadnle.. that I do feel abit better.. my mind is clearer.. and I do have a bit more energy.. so it does help me...I now take 30 mg (half of a 60mg..pill) 4 times a day.. every 4 hours... and I can feel the effect if it is wearing off.. its like my body has an internal clock that lets me know its time for some BB's or Mestinon.. really it does!! I'm glad that they are staring you out slowly on mestinon... that is best.. Mestinon can casue some GI upset in people...I was on some high doses 120mg.. 2-3 times a day.. and 180 mg timespan twice and once a day.. then I have knocked down the dosage till I am at the dose now.. I really hope that the mestinon helps you Lisa!! with out mestinon my mind would be much much more fuzzy.. and disoriented/dizzy then it allready is!! HAppy New Year! Linda

Hi guys.. I dont feel much relief today unfortunatly.. i feel like i have no muscle control in my head or neck.. like it a noodle... blah! heat aggrivates me.. though ice does help... Belinda.. its kinda funny that you mention your neck and tht pots began after that.. b/c the first time I blacked out.. I was only about 7 (?).. iwas riding a horse down a hill.. and the horse ran too fast.. and I wasnt holding on to tight. and I got thrown off the horse.. and landed hard on my back.. and the lights went out for a moment.. and an other time.. i was like 11-12 yrs old.. i was sled riding w/ a freind.. and zooming down a hill and i at one point started to roll down the hill.. and landed in a bush i think.. and something popped in my neck and I blacked out.. and had a severe headach after that.. and the headache havent stopped since then! I had pots symptoms before these incidents.. but especailly after the sled riding one.. i really began having problems w/ pots related things..then the whole saga of 2001... but thank you guys... you support and advice is greatly appreciated... I'm going back to bed.. and going to pop another pain pill....tkae care linda

Hi folks.... UGH! i am having arough evening.. i started to get a headach this evening.. whcih isnt unusual for me... its a neck headach.. sometime I think one of the crappier one to get b/c well its from he neck.... sso I sat in the shower.. and let the warm water beat on my neck and back of my head to try an allieviat some of the pain... GRRRRRRRRRRRR! the heat messed with my pots... but when my neck gets like this its the one of very few things that help.. so I kinda take the gamble... welll the shower made things Hurt even more.. from the back of my head down to about the middle of my back is swollen... I can feel "LUMPS" starting to form at the base of my skull...all the way across the back of my head.. and there isa lump under neath my skull..(base of skull.. where neck and head meet).. and the oh so lovely hump alittle further dwon my neck is MAJORLY swollen tonight... My botfreind tried to rub my neck... but ti hurts so badly to touch it... and they are lumps in the lump in my neck... and my spine from my head to my tailbone hurt... its hurt to even have clothing on.. rubbing on my skin... I didnt even bother brushing my hair out b/c my hair hurts.. and the pressure from burshing my hair will casue the pain in my neck and head to get worse... luckily though my hair isnt all tangly... the pain is traveling down my spine.. I'm sure that i will be good nd swoollen come tomorrow morning... oh joy.. My boyfreind actually got very upset when he saw and felt my neck.. and seen how swollen it is.. and felt the lumps on my head and neck... I told him that I have gone to many doctros over the past 12-14 yrs.. and that my mom has also taken me to many docs. to try and find out the root of my pain.. and cause for swelling.. and we have never been taken seriously... and the pain and swelling gets worse as time goes on... just like the pots it took so many years to get somebody to listen... I mean in 2001.. my neck was so bad that.. that the doc said had I not come in when I did that I would have lost the use of moving my head and right arm..(paralses).. but could not tell me why.. that was happening.. instead I spent the next 15-16 months on heavvy pain meds and muscle relaxers... and in PT3-4 times a week... the only thing that did help was a TENZ unit... and i have flares where i get that inability to use my arm and move my head... there have been several things abnormal in MRI of cervical... and during a spinal tap in 2002.. they could not get the needle inbetween the vertebra (SP??).. they said that there was very little space between them.. it took them over 45 minutes to get the needle in.. and 2 docs to do it.. and once they got the needle in my HR shot up high.. and I began shaking very badly... apparently that isnt a normal reaction to have during a spinal tap... how ever i have not been able to find a doc.. who will peice together things. and look at my neck/spine isues asa whole... and am suffering tremendously... I am so sorry for the length of my post.. I am very frustrated and am hurting.. and not looking forward to what the night will inevitably bring...I feel as though I am running a fever... and my face is very flushed and hot.. and my vision is starting to go squirelly... oh the joy of having a swolen neck... while my boyfreind was rubbing my neck.. my vision started to go blury.. and I felt like i was going to apss out... along with my squeirlly vision I am having these bright spots fly around my face and eyes.. they are bright yellow.. and make mne feel like i want to puke... sorry guys.. but if any of you have any inpput on where to turn.. I'd greatly appreciate it.. I know one memeber mention a doc to me to see.. and a Dr. thru John Hopkins told me to go see the same doc.. so I'm thinking .. hey maybe I should go see him.. but he is far away.. and I'm not sure how i would swing something like that finacially.. so any suggestion or though.. I'm desperate to not in reason for my pain..Dr. g.. does not think that its pots or fibro related.. but is unsure of what it is.. that makes 2 of us.. aswollendizzygirl

oh my morgan! i'm so sorry that you are feeling so crappy!.. I hope that the PT person can work something out for you.. hang in there and dont worry abut us.. we know you LOVE US!! sending you lots of CYBER HUGS! dizz

hey thanks for the info!...

hey folks... I am wondering. I seen dr. Fouad back in 2003.. for evaluuation and official dx of POTS.. and I havent been back to see her since then.. I need to have a blood volume test done.. and they dont do them here and the closest place to have one done is cleveland clinic... SHould I make an appointment to see dr. fouad and discuss things with her? She tried to do a hemodynamic blood volume test on me in 2003.. but was unable to gain IV access... they tried for like 45 minutes to get a vein to pop up.. and tried everything too! in the end they ended up just getting a small IV in to do the TTT... and as it turned out they diditn need to use the IV anyways ! my HR went nice and tachy all on its own.... I have one more question..(forgive me for sounding stupid here..LOL) OK blood pooling is the blood and plasma and what not being able to "pool" carry up tot he upper half of the body right? so is that what turns you legs and feet so purple? and blotchy red looking? and blood volume.. is that the amount of blood and stuff you have? How do they measure blood volume? and how do they know where it is pooling? (aside from the obvious of course..) like how would they be able to tell if your pooling in your stomach? thanks for reading and answering my crazy questions...!

HAPPY BIRTHDAY JESSICA!!

WOW! I'll be thinking fo you and sending some prayers out for you!

Oh wow Julie.. I'm sorry! sending you some Great BIG HUGS!!

OH Jessica that is fabulous news!! Congrats!! your baby boy alex is beautiful! he is so cute!! god bless you and your precious family!! Linda

no unfortunatly I dont.. the hospitals are kinda stingy in reagrds to hooking me up with them.. and my docs wont order them to be done outpatient... but when i do get IV's they do help considerable..

hello all... I hope that you all had a merry christmas! for the whole 10 minutes that i could sit up on christmas that was good!!.. christmas its elf was very nice.. but the potsy grinch came and stole my health! OH MY! I woke up about Noon yesterday and did not feel well at all.. tried to sit up and enjoy things.. and I couldnt... I was so fatigued and syncope feeling.. I went back to bed.. and that is where I stayed till well into the evening.. got up for alittle bit.. had actually started to feel better alittle.. tried to cook dinner. had trouble with that.. and spent the rest on the night on the couch under the blankets... around Midnight I started to feel really realy bad.. nausea.. SOB.. some very messed up tachy... blurry flaoty vision.. and that potsy head feeling.. my heart actually felt like it was stopping.. then it would be very fast.. and this went on for 5 hours.. I felt like death warmed over! i had my BF check my pulse.. just to check for himself and confirm what i was feeling.. and he couldnt find a pulse.. then it spiked and dropped back to non-exsitant.. think that it is safe to say that it was irregular... so i had him get the BP machine.. my BP was low.. But I have had it much lower and actually felt better then I felt with it at 99/57.. for me that isnt real bad considering how low it can and has gotten in the past.. and my HR was all over the map running between 94-170.. so needles to say I felt like poo...and just needed to vent that i feel like poo.. I was tempted to call the on call cardio or go to the ER.. but it was christmas and I ddint want to interruppt anyones holiday night.. and the ER.. forget that!! adizzygirl

Merry christmas and happy hannukah to you all!! Hugs dizz

what does "bump" mean?

I dont know some days i wake and feel Ok.. but with in an hour or 2 of being awake.. i start to slide downhill.. or I will wake up feeling really rotten.. and will stay that way.. not a whole lot of goods days inbetween there! I have super sensitive skin as well.. my skin will actually hurt to touch it.. and will get all red looking (head to toe). and feel very very hot....

Hey justwanted to pop in and wish you all a very Merry Christmas... and I hope that everyone feels halfway human this holiday and can enjoy it!! I thank god everyday that I have all of you on this forum... you are all family in my book!! love and Hugs! Linda:) :) :)

OH that is a wonderful story!! very sweet! thank you for sharing it with us.. and great taht you were able to get out and enjoy yourself!! YEAH! Linda

OMG! I'm so very sorry that you were treated that way by the staff and the doctor.. that is horrible! I must say that I'm not surpirsed though.. people can be so very mean and insenstive.. and just full blown ASH--holes!! I wish that i had some words of wisdom for you.. but wanted to let you know I understand and hope that you find some "nice and understanding docs!' soon hang in there..

Yep I'm reading em!!!! lol!! i just bought a really heavy pair of fleece sweatpaints.. OMG!! they are so warm and comfy!! I got them from oldnavy.. they were on sale for 10$ I couldnt pass them up.. I too am constantly freezing.. and my feet...whew! one way to get the bed all to my self is to stick my cold feet on my Boyfriend!!.. there are like ice blocks.. asa re my hands and nose... I'm gonna have to look into thos socks bootie things you are talking about...where can you find LLbean stuff? do they have a store of there own? or is it sold asa clothing line?? in other stores like Pennet's or simething... Now that cold feet delaying sleep by an hour.. that is interesting.. b/c my totsies are never warm.. and I never sleep!! LOL.. trying to be funny.. LOL

YEAH melissa! I'm glad that you got your sleeping cpap machine before christmas!! here's to amny restfull nights sleep!! linda

Oh Nina.. I can totally relate to your lack of sleep!! I tkae Lunesta.. and that doesnt help me sleep real great... I am awake till about 5-6am.. then drift off.. and sleep afew hours.. but wake up alot during those few hours... AHHHH.. where is that freggin' sand man when you need him???? hope that you got some much needed sleep last night.. Linda

Evie. you are too funny!! LOL!! well my breathing stuff isnt going real well.. I had to reschedule my breathing stuff" as I was so sick that day.. i wish that my docs and psychologist made house visits.. so that i could lay on the couch and not have to move or lift my head.. and could be ain a seeting that isnt going to set off my potsy attacks! little things light the sun.. and light are too much for me these days! PATHEDIC!!! too much stimulation... my good freind calls her dizzy days.. dizzy lizzy.. well dizzy lizzy has taken up permanant residence in my head.. EEWW!! I have been pretty much avoiding the stairs at all costs.... dizz

OH MY!! that *****!! !! LOL!! I hope that santa brings you lots of salt for christmas!!

Em.. I totally know what you mean!! the "prefered "drug list major bites! I unfortunatly dont have any advice in regards to MA coverage.. other then its not so great.. but better then no coverage at all.. that nurse sounds lieka real winner i tell ya.. give me her number I'll set her straight for you!! LOL!! assetiveness is not a strong point of mine.. so this would be a good learning experience!! my freinds tell me that i'm too nice... and need to learn to be mean and *itchie.. LOL... hang in there em.. If I figure a way i'll let you know.. Linda

hey.. how did you guys get insurance to pay for your O2?? where you O2 levels down?? Ihave treid in the past to get O2 for home use.. for my lung disease alone.. and the docs tell me that. that insurance wont pay for it b/c my O2 and blood gases are right on the line ... I know that it has helped with my Pots symptoms tremendously in the past.. and I'm sure that it would help with my lung disease as well.. one doc told me that 5 yrs from now.. that there will be no way that an insurance company will be able to refuse to pay as my breathing will get worse.. lovely thought..... so I'm just wondering how you guys got you oxygen.. and if you have any pointers.... thanks dizz