dizzygirl

I figured the best place to find out how effective something is or isnt.. is too ask your opionion on it! well.. after many MANY sleepless nights.. my doc called in a script for Ativan..to help me sleep.. isnt this a drug for anxiety?? or is it used for sleep now too?? I was taking Trazadone and ambien for sleep.. i by choice went off the trazadone.. as it was effecting my pots.. and well after 2 yrs of being on ambien everynight.. it no longer works.. so i stopped that too... andlet me tell even before i stopped the ambien.. i was up all night.. (and an FYI... Lifetime movie network has some decent movies on late night... also the discovery health channel is very interesting! ) anyways.. I get like very potsy around 2-3 am.. and nothing I do relieves it.. and I then start to feel "wired" But I was wondering if any of you take Ativan for sleep.. I dont want to take something for anxiety.. when I dont really have anxiety.. you know what I mean?? Ok I am done rambling.. dizzy..insomniac.. girl..

OMG!!!! you guys are too funny.. I get a laugh reading your posts..

oh my.. sending bear hugs your way too.. please take care dizzygirl

mary I am so sorry that things are so rough right now.. I am sending bear HUGS your way! dizzygirl

Ernie I am so sorry that you appointment got cancelled with Dr. grubb.. I can totally relate on that front.. I wa suppose to go see Dr. grubb aug. 22nd and they said that they had to cancell mine too.. but that they would have to call me back with a new appointment time.. I really have no clu when that will be.. I am hoping that Dr. G is allright.. sorry ernie!

Melissa.. i spoke with the docs office this morning.. and they called me back.. and lowered my dose to 2 60 mg. tabs 2x's a day in the am and pm.. now I spoke with the nurse about this..(the timing of it) they are not the timespan pills.. so they will most definaltely ware off before I am due for the next dose.. But I sse the doc tomorrow morning.. so I am going to talk to her about this.. I really am wanting to stop the mestinon.. I am just so fed up with feeling so crappy!

hi all I am just wondering my doc wants to switch me from ambien to restoril for sleep.. the ambien doesnt work anymore.. and for days now I have not barely slept a wink.. and believe me I am tired.. but cant sleep!!!!!!!! This round of insomnia is bad.. But I was just wondering if any of you had taken this drug.. I wanted some opiniions on it before i start taking it.. thanks a bunch Linda

Hi steph.. yes I just started the new dose..I wasnt told about the splitting the pills up..i will have to look into that.. I am waiting to here back from Dr. Grubbs office to get an appointment to see him. I am praying that it wont be a very long wait to see him.. But I could handle the Mestinon at the 60mg dose 3x's a day.. but not this dose I am at now.. YUCKY! Hopefully tomorrow I will be able to start getting things straightened out.. thanks! Linda

Hi corina.. thanks for the tips.. I take my mestinon at 8am and at 8pm. and then i take my BB at 10 am,5:30pm, and10pm.. this is the schedule that the docs worked out.. hoping that if they got the timing of my meds right.. along with the right dosage that I would start feeling better.. I take 180mg, in the am and pm.. and I am thinking that it may be to much medication all at one time.. so I see the doc tomorrow and I am going to talk it over with her.. and yes Corina you english was perfect!!! thanks for you help Linda

Hi.. i have been on mestinon since January of this year.. and I had a rough time in the beginning taking mestinon.. it caused severe fatigue.. and nausea.. and a few other things I am sure but cant remeber now.. anyways.. may dose was eventually bumped up to 180mg once a day timespan release.. I actually didnt do too badly when i increased to that dose.. then it began to not work as effectively as it had when i first increased the dose.. so It was bumped up again to 180mg. tiwce aday. well It has been over 2 months since I increased my dose.. and it is amking me feel worse. about 2 hours after taking it.. I get sever abdominal pain, nausea.. diarrhea and vomitting.. and i get very lightheaded feeling like I amm going to pass out.. and my vision gets so messed up I can barley stand it.. this happens nearly everytme that I take it.. more so with my night time dose.. then with my mornig dose.. also my heart and chest feel very funny.."weird" I do not know else to describe it.. my cognitive thinking and ability to retain info has gotten much worse over the past month or so.. more so noticable in the last 2 weeks.. I just cant concentrate, and feel very 'fuzzy minded" which I know can be normal for a potsy person.. I keep taking the mestinon.. in hopes that i will have a half ways decent day.. and that it will help me feel better.. its is crazy you know.. I or we take a medication that makes us (me) feel worse.. in hopes that it will make you feel better.. I know that if anybody understands what I just said.. it will be you fellow potsy people.. LOL anyways i am wondering if any of you have had this reaction to Mestinon.. either on a higher or lower dose.. are these normal side effects of mestinon? I was hoping that if I stuck it out longer enough that the side effect of ahigher dose would go away.. I am wondering if the high temperatures and humidity we have been having is playing aprt in my feeling this way.. or if it is the mestinon or a combo of both.. i really dont know.. But I am seriously wanting to talk to my dcotr about going off of mestinon.. i just cant handle the effects of it any more.. most days after I take it i am so bad off that i am useless.. tonight is a good example.. i tried to get a few loads of laundry done.. and had to climb up the stairs,, and my legs felt so weak and fatigued.. my legs started to buckle and i got very dizzy.. i all most fell backwards down the basement steps..it is so scary.. had the railing not have been there i would have.. So i would appreciate and opinion or advice.. I go to the doc. thursday.. the thing is.. even though the mestinon makes me feel so poorly.. it has decreased my number of blackouts and passing out spells.. so I feel like it a double edged sword.. not so great solution either way that I go.. AAAAAAAAAAAAAAAAAAAAARRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRG!!!!!!!!!!! a very dizzy dizzygirl...

that is so sweet.. i got a real smile out of that one.. thank you for sharing..

hi emily.. i just wanted to add a me too in the mix.. i also have been on ambien for over 2yrs.. take it every night.. and it does not work like it used to when i first started taking it. I take 10 mg. at bed time For the past week I have had horrible insomnia..I am up all night long!.. my boyfriend goes to bed at9pm, and is back up at 6 am,, and low and behold I am still awake.. ready to talk his ear off.. I unfortunately dont have a ny tips on how to get to sleep and beat the insomnia.. I go through cycles where I just dont sleep.. then one night i am so exhausted that that is all i do for days is sleep.. I find that i can sleep better during the day.. I dont know why.. but I can catch a few winks.. hope you get some sleep soon.. dizzygirl one insomniac to another...:)LOL

Dayna.. thank you for sharing this book.. by the sounds of.. its just what I am looking for.. I look forward to reading it..especailly the part about when the you you knew disappeared".. i am always saying that i am not the same as i was before i got sick with POts.. of course we are ever changing beings.. but its alittle different from that.. if that makes sense.. its like when you got ill.. you whole life changed and so did the prospectives and goals that you had set.. Geez.. louise.. i hope that i am making some sense tonight! LOL thanks again dizzygirl

Oh my.. you guys are so funny! I think we should bombard the oprah show with our stories of dysautonomia... maybe if she saw it pop up enough she would take some interest in it.. it certainly isnt a "dull" topic.. not from where we are sitting.. or laying i should say... LOL just a thought..

WOW! thanks for always being there Nina!

Ernie.. I just wanted to wish you good luck with your app. with Dr. grubb.. and yes if you find that magic pill.. I want some!!! have asafe trip ernie dizzygirl

Michigan jan.. hi.. all across my chest and through the tops of my shoulders..there are very sore "spots"... especially at the base of my neck and through out the shoulder blades and running all down my back.. along either side of the spine and through out the ribs/ hips and tailbone.. big OUCHIES! I used to be in pt.. and the therapist would try to message the gigantic knots out of my neck and back... and i would hop around so much on the table.. and nearly be in tears from the pain... that he wouldnt touch my neck or back any more.. stricly heat thereapy.. and tenz unit.. I also get what feels like lumps right along my collar bone.. they are more then likely knots..the knots are usually about the size of a big gumball.. and boy they hurt! I also have "spots in my knees an elbows.. I am thinking that it is more thn likely fibromyalgia.. now it is a matter of finding a doc who will listen!

Hi.. my mom and I have often thought that i have fibromyalgia... my mom has this... and for years we have brought it up to the docs. and they would brush it off as its just stress.. or I am too young to have such problems.. I am curious though do you see a regualr PCP about posssibly diagnosising firbo? And how do you broach this topic? I allready feel Like I have given my PCP oodles to deal with.. also, i have seen EDS brought up many times.. what is that? EDS? the only thing that is different in the last few days.. is I have been having bad insomnia.. and have not been able to sleep restfully.. or as much as I normally would need .. HMMM??? dizzygirl

Hi folks... hope this post finds you feeling allright.. On saturday morning I woke up and the bones in my arm and all the way down to my hands was hurting.. and also my legs from the knees all the way to the toes.. were hurting...It feels like my bones actually hurts. I woke up this morning and my whole body hurts. from my neck down to my toes. its a very deep seeded kind of pain... it realy feels like my bones hurt.. it is quite painful.. my right foot, knee, and elbow are swollen...and I have the chills...and I itch like mad...my skin itself is really sensitive to touch.. actually hurts.. I have had this problem since I was 11-12 yrs old. the right side of my body would swell up, and would be very painful..I have been evaluated for arthritis.. it was negeative.. I am 23 now, and am still haivng the same problem, but it has gotten worse and is much more frequent then it used to be..and I still have no answers as to what it is or could be.. or what casuses it for that matter..I have wondered if it is pots related.. I am wondering if any of you have experienced this... any suggestions and input would be aprreciated! a hurting 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!