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Everything posted by dizzygirl

  1. I've been on clonidine since 2003 it one of the first meds that i tried for pots, I started taking the patch.. the lowest dose, and over time worked my way up to the #3 dose patch, I did not have the trouble with drowsiness that i do now with the pill form. I had to stop taking the patch form bc it irritated my skin so bad. i currently take 0.2mg twice a day of clonidine. It does make me very tired and sluggish, but it helps alot with tachycardia, and adrenaline surges.... hope clonidine is a sucessful drug for you!!
  2. I recieved the results of skin biopsys Ihad done a few weeks ago, and it shows that I have small fiber neuropathy, I'm wondering is this a common occurance with dysautonomia? I"m going to have a glucose tolerance test done before I head back to cleveland to further discuss my other test results,.and possible treatment... SFN does explain some of my bizarre symtpoms that no one has been able to give me an answer for, but it doesnt cover all of em'... But my main point in posting is I was wondering, as I said, if this was a common thing?? My dr Ive been seeing there believe it might actually be the cause of my dysautonomia...since it has never been figured out... thanks..
  3. yea i was going to say reactive hypoglycemia as well......good luck to you
  4. For some time now I've been having a doosey of a time with sudden and prfound muscle weakness, that will land me down in bed until it passes (generally 2-3 days). while I have the sudden muscle weakness I have really bad shortness of breath as well, and just a general feeling that i'm working harder to breath, even just laying in bed let alone trying to get up and move. just wondering if anybody has any pointers or if this is a common dysautonomia thing?
  5. my goodness maxine.. I just wanted to say i hope you get some relief soon! thinking of you :0) love and hugs dizz
  6. ernie how wonderful!!!!!!!!! Im so very happy to hear that you are improving that is fantastic to make such a come back after how sick you were... Im so glad that you are dancing too how fun!!!!!!!! I wish you much continueing success in dancing, life, and your researcher! many hugs! dizz
  7. Thank you all for you helpful replys! I was one protonixs, at one time to help with my GERD, I had some relief with this, however my insurance will no longer cover this medication, and other meds that ive tried have not been very helpful. Maxine, I had an emptying scan done like 4-5 yrs back, and have had probably nearly every gastro test imaginable since i was 16. however my GI sysmptoms have taken such a ruthless turn in severity, it probably wouldnt hurt to repeat a few things.... thanks again!
  8. I was wonder if somebody may have seen a Pulmonologist at the cleveland clinic you might be able to point me towards...I' looking for one that can get a handle on restrictive lung disease as well and the dysautonomia components of breathing issues.... Ive done a searchin on the CC website, and havent had luck finding a dr, maybe im just not using the right key words..IDK... thanks in advance!
  9. hello all! GI issues appear to be one of my biggest autonomic issues and have been for a while now. I know Ive posted on this before. but im incredibly frustrated, as i feel just horrible, I'd say about 90% of the time when I eat or drink ANYTHING I get sick from it )ie nausea ,vomitting, and or diarhea) allmost instantly. Its like the moment food or water go into my mouth, that is all it takes to set me off. Ive tried diet changes, doing liquid diets, when symtpoms are so severe that solid foods arent even worth trying giving the issues it causes....cutting out meats, cutting out fatty stuff.. watching the sugar/carb intake. I cant seem to win no matter what i try. my stand by meds dont even thouch the symptoms anymore... So far testing has come back normal, so this adds to the frustration... I have days where immediately upon standing i throw up, this past weekend I atempted to go to the grocery store, and i got so sick in the store, with horrible gut pain, and this sensation that my stomach was turning inside out, intense nasuea, and inevitably diarrhea. Complete with chills, goosbumps, facial flushing, muscle/legs weakness, and uncontrolled shaking. I bought my water and left....and spent the rest of the night feeling yucky..( no i didnt have the flu..i just get like that) Do any of you get such a sudden onset like this? have you found anything that helps you???
  10. I'm afraid I dont realy have any words of wisdom.. other then to say I understand as far as the throwing up goes with neck isues... I avoided a regular colonoscopy for over a yr... b/c of the prep.. and how it affects things.. the colonoscopy itself isnt bad...BUUUUUUTTTTTT I;ve never had the virutal colonoscopy... I really hope that you can get some help at the CC.. It bites to have to deal with so much..... thinking of you girlie.... Big hugs!
  11. you can check on the main page of dinet.. they have a listing of dr's.. some who i believe treat kids. I wish you and your daughter luck...Oh you can check DYNA kids too.. Im not sure if they have a listing of dr's.. but it a dysautonomia site for youngster ....good luck
  12. Maxine i really hope that you get some answers!! how are you seing at the cleveland clinic? good luck to you hugs! Mkoven- ive seen dr heffez in Milwaukee.. i was quite pleased with my appointment with him...If I decide to have surgery i personally would choose him.....
  13. hiya folks... I know i recently posted about GI stuff... I was wondering if any of you get Instant vomitting upon standing? I've had several bouts since last week of standing.. and with in 30 seconds if that i puke. I'm not sure what is making my Gi track go so crazy.. but if ya fellow potsys got any pointers to make it stop i'd love to hear them.... thank you!
  14. thank you for the input.. i hope that you too find relief!
  15. I would have to say yes i think meds contribute. that with the combination of pots in of itself. I know for me clonidine certainly does affect my mood on some days. I get very snappy after taking it... But also if i get really fatigued and symptomatic and im somewhere where i can NOT lay down.. i also get crabby. the heat.. different things affect it.. but yes i just wanted to agree with you!
  16. Hi folks. Gi symptoms necessarily arent a new thing to me. But I'm wondering if you fellow pottsies get really severe diarrhea and vomitting a week or so before your period? I've had 4 periods in the past 14 months.. and every time 5-7 days before my actual period starts.. I get sever diarrhea.. like water (sorry for graphic details) and I'd say I probably go up to as mant times as 10 times in an hour. And Up to 40+ times a day for days at a time (5-7). Once my period actually starts the vomittimg and dirrhea stop. POOOF! just like that When I first started getting like this ( last spring 08') I only had the severe diarrhea.. a few small bouts of vomitting.. and a flare of course in syncope and presyncope.. and other pots symptoms.. pots flare is normal. But last month when I had my period.. the symptoms where so severe that it landed me in the ER barely able to move, my BF had to keep wheeling me to the bathroom.. embarrassing for sure.. but necessary! Anyways this last bout.. has to be by far the worst its been to date... i had projectile vomitting.. over and over again, and there was no controlling the diarrhea. I had muscle fatigue to the point that I couldnt barely move by myself. I ran a fever, and had various swollen joints. And trouble breathing. I was tested for the flu and virus.. that was not the case. considering that i've gotten like this before before my period.. only not this severe. I was wondering if you folks get this to this exstent? ALso for the last month or so now, When i go from a laing to sitting or sitting to stand.. almost immediately i feel the urge to puke.. some times i do sometimes i do not. and with the positional change comes diarrhea.. bad in its own right.. but not as severe as what hits before my period. im running dehydrated alot obviously, and am just hydrating at home. I had a horrible ER visit when i went last month and am just done with ER rooms. regardless of how bad im feeling. any help or insight would be appreciated thanks! dizzygirl
  17. Hey everybody IM posting on behalf of Belinda (bee) she use to post here, and asked me to post amd let the old timers on her know, who followed her and supported her.. Know that she had a muscle biopsy done that confirmed the diagnosis of mitchondrial disease for her. she has complex 2 and 3 mitochondrial disease. And is awaiting more test result to come back in to give her further answers. this is the cause for all the issue that she has had, symptoms ad and dysautonomia Im sure she would also appreciate your guys love and support now too Dizzygirl
  18. UGH morgan this all *****! I just had my GB removed the end of january.. and my surgeon did keep me ouvernight and hydrated me and i wasnt aloud out of bed for 24 hours.... Now the anestesiologist played a large part in keeping me overnight given my medial history.. and uncontrolled pots alone... they tweaked things so that insurance had to allow it... SO if your able I would ask to speak with the anestiesiologist before hand and explain all this to him or her... I wish you the best of luck morgan.. GB attacks are miserable... Cyber hugs linda
  19. ~EM.. yes i do notice that by about 7-8pm i feel alittle less cruddy... and by about 11pm Im ready to go to bed...I'm pretty useless during the day.. i try to push but that doesnt accomplish much other then making things worse! My niece's 2nd birthday party is on saturday.. and aside from what i ordered online i havent been able to get out to the store to buy anything! I hope there is a break in the fatigue clouds saturday for atleast an hour... thanks all for the tips and understanding :0) I do think there is some change of season/weather component to things....hopefully it will pass soon
  20. I'm not stranger to butt kicking fatigue.. as im sure many of you on here are too.. As I stated in my last post I've been having crazy neuro symptoms assoicated and not assoicated with faiting.. well.. while having been going thru this, My fatigue which is normally badb enough to keep me down... has increased. Looking for pointers in getting thru this hump... as i dont know what casuing thing to stirr... but some idea's to combat this crippling fatigue would be helpful! thanks
  21. i was getting IV fluids on a regualr basis. I found it to be helpfull early on. I get fluid ran thru over a 12-36 hour period. Done at my local hospital as needed. My insurance will not pay for it to be done at home... but... will pay for overnighters in the hospital..weird! Depending on the amount of fluid I get i will have a BP boost as well as an energy boost lasting anywhere's from 12 hours to 3 days. My doctor(s) have no problem doing this, as its been one of the few things that have been helpful good luck
  22. hi.. nope I dont have any answers yet...and I'm still having symptoms.. I'm not exactly sure how to move from here.. my CC appoint that was scheduled for may was moved to june.. so now i have a longer wait.. I guess go back to my pcp again? IDK..... Im so frustrated!!!!!!!!!!
  23. No I havent had a 24 hour one done.. I wanted one done a few yrs back but was not able to get it done. I've had like 4 maybe even 5 EEg's i think and they all have come back abnormal, most recent one (2006 i think) the neurologist couldnt tell me with certainty one way or another if i was ahving seizures or not. And i currently do not have a neurologist. I think a 24 hour one would be very helpful though.
  24. Hiya The last 6 weeks or so maybe longer actually.. I began having paralysis epsidoes daily and multiple times a day.. increasing with severity the more frequently i had them. And by paralysis I do mean paraylsis, as in i can not move thru my whole body. the only thing that moves is my eyes and they track rapidly back and forth. These spells are beginning to affect my breathing while im in one.. this is new as well... and usually after a eppy, I'm so worn out and weak..its unreal and in pain. NOw i also began having frequent epsidoes of numbness in my tongue lips, and various spots on my face, my tongue will feel like its is shot full of novacaine .... and of course I bee stinging as returned afected the roof of my mouth. Now In 2005 when this stuff started I never did really get any answers, andhere I sit 4 years later... still no explainations and symptoms are worse now then they where then if that is even posible. Uh.. Ok.. So Last week I think it was I began having black outs, where my tongue and lips went numb and the bee stinging in the roof of my mouth, along with the normal fainty symptoms us potsy get. and my muscles get fuzzy, and feel like there is electricty running thru them right before the world goes black and then after i come to. And i'm left feeling extremely fatigue and weak. I have a loop implant and have been able to record.. and its not a drop or spike in my heart rate causing it...so that is good! this has happened several times... and to be honest these kind of episodoes really scare the heebie jebbies out of me! With the incresed symptoms .. has come an increase in potsy symptoms. I'm not sure what causing what at this point.. but was curious if any of you out there have similiar expereinces?? I do have an appointment in June at the CC with a neuromuscular dr.... but that is june and this is now, and I'm so frustrated in the lack of answers and increase in symptoms that it isnt even funny! I had a CT scan of my brain done wednesday but havent gotten the results back yet.... thanks for reading Dizz
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