dizzygirl

hi! i also am a patient of dr. grubbs, and have to second Lisa columbus..I too have been seen at the cleveland clinic.. and I must say that I was not to impressed. Dr. Fouad was great at getting a history and listening to what was going on.. and there testing facilities are top notch.. there follow up care and treatment in my opinion *****.. the other cariologist I saw there beside dr. fouad, was Dr. martin. I will not see him again. In my opinion, he was pompus. He turned everything that I said into a psycgological problem... and that I must be suffering from anxiety attacks and panic attack that that is why my heart beats so fast. Well heck, if they say it then it must be true! So My experience with the clevelnad clinic was not a positive one.. sorry.. good luck too you..If they is any way that you could see Dr. grubb.. that would be best.. do you by chance live in Ohio? you may want to contact a social worker through the hospital.. if you are an Ohio resident, you can apply for a program, to were you wouldnt have to pay the medical cost..its based on your income I believe. its worth looking into. again good luck

hello Poohbear.. I am happy to see you back.. i hope that you are feeling alittle bit better. I am so sorry that you had to deal with egotisticle docs.. that *****.. But, I am so very happy to hear that you are getting some at home services.. that is wonderful.. I hope that it helps you! I know how you feel about using a wheelchair.. being so young.. I am 23 and i hate the thought of having to use a walker and soon an electric scooter. I am greatful dont get me wrong.. but i worked with elderly people who had to use wheelchairs and walkers for mobility and such.. and it does make me feel like and "Old Person"too..and partly because my pride gets the best of me.. and I wonder what people will think.. a 23 yrs old using a scooter! I know how vain of me...LOL But anyways i wanted to pop in and say hey.. and wish you well.. good luck on your packing and moving..dont over do it.. do you have anybody to help you with the move?? I hope so.. dizzygirl

hello all... i am in better spirits today.. I have made some decisions.. I put my name on the waiting list for an apartment complex downtown.. that is set up for disbaled persons and the elderly... there are people ther who are my age who are disbabled for whatever reason.. I think that this is a wonderful oppertunity for me...and will be best for me. I will be living totally alone again... and it will be very hard.. but I think it is best that i do... I need to be somewhere were I can get support not..criticism..and get healthy physcially as well as emotional health.. there is a waiting list for the apartment building.. there should hopefully be an opening by the first of the year.. so things are looking up today.. I thank you all so much for your words of encouragement and support.. I wish i could reach out and hug you all! thanks! Linda

Hi emily.. I just wanted to say I too get little red bumps all over too, it happens often.. so we are wondering if there is something in my environment that i am developing an allergy to. I keep benadryl and itchy cream on hand... and also get cotisone shots at the docs office.. last week.. i broke out in a bad rash.. possible med reaction...but i broke out the night before a bad potsy episode our bodies are just so sensitve..so i am not sure what its from... But i agree that you should get it looked at... you never know... good luck... and if that doctor of yours thinks you are crazy.. give him a swift kick in the rear! LOL Just kidding.. wouldnt we all like to do that from time to time! good luck em dizzygirl

I also for got to add, since my mestinon has been increased to 180 2x's a day, the side effects were horrible.. very bad stomach pain, alot of nausea, vomitting, and diarrhea..and I must say that i feel worse at this dose of mestinon...I think it might be too much... I have been taking it now for about a month or so at this dose.. and a bout an hour or so after taking it... I spend the next 3-5 hours running to and from the bathroom.. SO i think I need to lower my doseage.. I hope that you have apositive experience with mestinon!

thanks! you all are wonderful!

good luck on your move.. take things as slow as you possibly can... talk to you soon!

Well my first 2-3 days on mestinon were absolutely horrible. I had severe fatigue, and it made my muscles feel so weird.. and heavy...and it gave me alittle bit of a tummy ache..I was bed bound for like 3 days.. then I started to feel better, and actually started to feel better then I had felt before I started mestinon, it was worth those 3 days in bed.. it has helped.. it is defiantly worth the try.. good luck 'dizzygirl

hello all... thank you all for your support.. it means so much... where is Dr. Chelmisky? Is he /she at the clevelnad clinic too? I saw Dr. fouad approx. 2 1./2 yrs ago.. i dont think that i would have a problem getting in there...adn for Dr. Grubb.. I was going to give his office till friday to call me back with an appointment... then i was going to call them back...I have left messages with the nursing staff.. but nobdy has called me back...I know thay are terribly overloaded... But I really appreciate the support, I know I can always count on my pots family to understand the daily struggle with dysautonomia and all tha goes allong with it... thanks again.. dizzygirl Here is a cyber HUG for you all!

ariella, hi i am sorry you have having breathing trouble, if i recall correctly.. you have restrictvie lung disease?? I tooo have that. and know how rough it can be. as far as talking goes with my boyfriend, I have tried to talk to him many times before, because this sint the first time he has been a jerk when it comes to me having pots.. he doesnt want to hear any of it.. and wont listen to reason.. i will try one more time though to talk to him... hopefully he will listen... I'm sending a cyber hug to you too.. I hope that you feel better dizzygirl

hi all... boy this is one of those emotional roller coster weeks for me.. I still have not had anyluck finding a doctor to treat my pots...and am hoping that i find one soon. well too top off, my allready crappy week, my boyfriend, feels the need to tell me that "I am imagining being sick... that I am not really sick... that it is not humanly possibly for a person to feel sick all the time..." Then my grandmother tells me, that i dont really need a scooter to help me, that I am just being lazy and dont want to walk... I tell you when i heard all this I just cried..I know that what I am feeling and am going through is real... and is so debilitating... I have no support or any body to help me... my boyfriend said there is no reason why I shouldnt be able to do all the cooking and cleaning.. because all i do is sit at home all day.. and after all according to him there is nothing wrong with me.. I am so upset, the people that are suppose to be there for me, are not, they would rather ridicule me and make me feel guilty about not being able to meet there needs. so selfish. AAAAARRRRRRRRRRGGGGGGGGGGGGGG!!!!!!!!!!!! anyways folks, thanks for listening to me vent... this week i just feel like screaming and pullling my hair out! I am so sick of jack*** narrowminded people... dizzygirl

hey there rita... I have had a sleep deprived EEg..it painless really.. they hook you up to about 27-35 wires/leads to your head, and a few on your chest to monitor cadriac.. and depending on where you have it on they may put a few leads on your chin and upper lip, as well as around your eyes. I have aproblem to with the shakes.. i typically will get them before, during and after a passout spell. sometimes i get them when i feel syncopal.. or have tachycardia.. where my whole body just feels like it is shaking from the inside out.. that can last for several hours... my doc said that i have seizure like symptoms, but not actuall seizures... that it is my body'a way of reacting to the stress or distress thtat it is under with.. syncope and tachycardia.. i wish you luck with your eeg's and hope that all is well good luck dizzygirl

Hi i just wanted to chime in here... shortly after i started having pots symptoms, i began getting yeast infections.. dont know why... never had them before.. I take difflucant for them... and sometimes have to use and perscription strength anti itch cream...(yuck!) good luck

good luck! let us know how you are doing.. when you feel up to it...

Hi, PattiL- hi.. no this is not my first appointment with Dr. grubb,i actually have been a patient of Dr. grubb for about 2 1/2 yrs. But my last 3 appts. have been cancelled..understandably so last winter when he him self was sick.. I am hoping that i dont have to wait another 6-7 months for an appointment. I did speak with sherry and she told me that she would call when they could reschedule me. I requested to speak directly with dr. grubb in the mean time. Ernie- i can relate to what you are saying totally..last week my pcp told me that i was the worse case of pots that she has ever seen--how depressing! I hope that you find a doc soon.. I am not giving up hope... there is still hope with Dr. grubb.. even though he is so far away..now if he gives up on me I know i am in trouble! But i dont think that he will..good luck ernie! morgan617-I am SO very sorry that you had an ablation.. I hear that that is likeone of the worse things you can have done when you have pots.. yikes! I feel today like you said, i want to cry then dig a hole jump in it and die..sometimes when things are really bad for me like they are now.. I just want to give up and give into this..but my willpower is much stronger then my occasional thought of digging a hole! thanks again so much for your support.. I can think of one good thing today... I am getting my scooter in 2 weeks ! YEAH!

hello all I am very upset this morning.. I recieved a message from my doctor today who was treating me for pots, and has treated me for the last yr. He does not understand who I can do allright for a few days, and not have any tachycardia, then wake up with it out of the blue, and have trouble getting it under control again. And he said that he has had me on the tilt table twice, and I have not pass complete out.. mind you my HR goes very high, and i have BP issues on the tilt.. and become very pre-syncopal.. very close to passing out.. Anyone with knowledge of or who has dysautonomia.. is aware that everyday is different with pots, and that some days you will feel good and other days you will not.. Just because you are on the tilt doesnt mean that you automatically passout, though with alot of patients they do.. I am so debilitated right now from pots, i can barely function... now i have no doctor to treat my ANS problems.. and I was suppose to go see Dr. grubb in August, but they cancelled my appointment, and they cant tell me when they can reschedule me.. so i dont know what to do. I am very intolerant to alot of the medications that we have tried.. or to sensitive to it.. allergic reactions..I have done everything that has been asked of me to do, I have been very cooperative, and willing to try anything to get better.. I was really counting on this appointment with Dr. grubb, in hopes to get some answers or direction of where to go with related ANS issues.. , I dont know where to turn or who to talk to.. I am so discouraged right now.. I just want to cry..sobb is more like it.. any suggestions would be appreciated! dizzygirl

Julie, thank you so mcuh for letting us know poohbear is in the hospital.. havent seen her on the board latley.. I hope that she is doing allright, as well as can be expected with pots that is.. please let her know I am thinking of her and wishing her a spedy recovery.. sending HUGS her way.. dizzygirl

hello all... well last night i got a spurt of energy that last like 3minutes (how pathedic!!!!!!) .. so i thought well I will clean the toilet real quick.. it needs done, so I got out the Scrubbing bubbles foam spray and spray it .. i had to bend over to do this.. and when I straightened up into a standing positiion.. BAM! here comes a potsy moment.. i got severe nausiated, and I got very hot feeling and actually started to sweat (which never happens), and the tachycardia and chest pain, began.. I felt like i was going to pass out..nearly did.. everything started to go black, and i could feel my self like feeling like i was falling..i quickly got down on all fours. and layed my head down, and layed in front of the fan, and tried to control my breathing, i stayed that way for a while, i literally had to crawl.. to bed.. I layed there for over an hour feeling as though i couldnt get any air to my lungs.. tachycardia chest pain and nausea lasted apprx. an hour.. It just really annoyes me that i cant even clean the freakin' toilet, without getting syncopal.. I am wondering if i was a combo of the cleaning fumes and the bending over that caused it...

katherine.. i am so sorry that you had a bad experience with m/h. !!!

ariella, i wish that we were treated better by the medical commmunity... and taken more seriously.. instead of being brushed off as psycho cases !!!

Ernie, hi i dont have any suggestion for you, but wanted to offer my support.. I hope that they can help you.. I personally suffer from migraines.. but the neurologist that i saw will not give me anything for migraines.. she said i am on too much medication allready.. and that there is no need for meds.. needless to say i will not be going to back to her.. yeah spending 4 days in the hospital with the worst migraine of my life! then 2 days later was back at the hospital for another migraine.. crazy quack! allright good luck ernie, and let us know how you do with migraine doc..

Holy Cow! I just seen all the typo's that I made.. sorry! its a potsy kind of day..cant think clearly!

Persephone.. i am so sorry about th report that you recieved...your record saying that you ddint have POTS. that is just terrible, but par for course I afraid. So many us of us who have POTs have been through the mill, when it comes to being told that they have a psychiatric disorder.. when in fact it is not..I think that it is very normal to have some anxiety and depression, when you feel so horrible, and feel like you are going to pass out, or do pass out.. very knowing when it will happen, or how you will feel... and not to mention the Hr issues that we all have.. there is no mistaking that.. When I first got sick, and was bed ridden, On easter sunday, I entered up being taken from a hospital in my home town, to a hospital over 2 hours away, and my BP was sky high, and my Hr was also quite high... thuinks were just very unstable.. well instead of them treating my BP&HR issues, they assumed that it was all psychological and that I was having panic atacks, and that that was why things were so high..and since I had a previous diagnosis of depression and PTSD (dx from 5 yrs prior) that it must have been that. Well anyways getting to the point of my story, instead of treating the problem I came in for, they treated it as a psych, prob. and kept giving me shots of Valium through an IV, which I very quickly found that I was allergic too, but they kept giving it to me, and you know what it didnt do a darn thing to lower my HR & BP, it went up higher instead of lower.. So what they did instead, was they sent me over to a locked psychiatric unit, and stuck me in a little room.. I could barley hold my head up, and my HR &BP were stil out of sight.. in the end the head psychiatric doc came in, and did a psych eval. and talked to me, and checked my HR and she could not believe that they sent me over there when things were so unstable...she concluded that I was fine mental health wise, and that I should be over in the Er department.. not getting mental health unit.. she personally took me back to the ER, and she chewed the ER doc out, and they eventually caled in the Neuro doc that was suppose to have been called 12 hours prior when I first got there.. so I know how you feel about the mental health things...have been there done that! I wish you luck persephone and hope that things get straightened out..I wish you lived here in the states.. you could get in and be seen by some of the POTS doc here.. like DR. Grubb or Dr. Fouad.. hang in there.. and dont believe those crack jobs.. who say it is all in your head and that you have some psych. disorder.. you know you and you know what you are feeling and going through. and that POTS is VERY real! we are here for you! dizzygirl

hello folks! I thought that i would share good news with you for a change... I was reallt bad oof yesterday (BOO!) and I went to the doctor, and we had a long chat about POTS and how it is affecting me and my quality of life.. and low and behold.. she is going to send in the paper work for me to get a scooter.. I am so excited!!!! Maybe now i can go to walmart and not blackout in the check out isle! or at the deli counter!!!!!!!!! it will be about 2 weeks. I cant wait! SMiling from ear to ear dizzygirl

well not alot of creativity went into mine either. dizzy... because i am always dizzy.. and girl.. well hey i Just A Girl! and dizzygirl... was born... LO)L