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    reading,making quilts, sewing, crochetting, embroidery, walks on the beach on a cool evening ..being with friends.. and laughing till there are tears rolling down my face..

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  1. Dizzy are you around? I've read your posts and it's nutzo we have so many issues. Can you please email me at lindsayclem@yahoo.com. I would like to know how your are doing and what your take and do to battle all this. I recently was diagnosed by Mayo Clinic with POTS Mast Cell and have methylation cycle issues bad. 

  2. 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!!
  3. 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..
  4. yea i was going to say reactive hypoglycemia as well......good luck to you
  5. 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?
  6. my goodness maxine.. I just wanted to say i hope you get some relief soon! thinking of you :0) love and hugs dizz
  7. 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
  8. 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!
  9. 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!
  10. 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???
  11. 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!
  12. 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
  13. 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.....
  14. 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!
  15. thank you for the input.. i hope that you too find relief!
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