denabob

I'm really glad to see that I'm not the only one who is "entertaining" the public with my lack of control over which floor I happen to land on! I was (pre-pots) a letter carrier for the usps , you have no idea how many yards and porches I have woken up on. The most interesting was when I finally learned my warning signs and decided to take myself back to the post office so that I wouldn't scare any more of my customers. Well ,I made it to the office but only to the loading dock. Due to "hightened security" we cant get in without ringing the bell to get the doors unlocked first. I rang the bell and the next thing I know was surrounded by my co-workers and ems (the fire dept. happened to be next door) They couldn't read my bp it was so low and my heart rate wouldn't pick a number and stay with it. They wanted me in the hospital but I knew it wouldn't help (been there...done that!) I was tickled that I wasnt bleeding and could speak. The "sympathy" look on everyones face is priceless! I cant get them to realize I'm not some super human just this has become a way of life for me and as long as I dont get hurt with the fall I can handle it. I do like your idea of "lay down" comedian though my friends dont seem to find it humorous when I make fun of them for freaking out on me. We have to stay light hearted or we'd go crazy!!Thanks for keeping us reminded how good it feels to smile!!!!!!

The high heart rate after exercise (according to my doc.) isone of our main symptoms. I know it may sound like I'm trying to sell the stuff ,but I take octreotide lar injections and before the med 4 minutes on a stairmaster and my heartrate went from 85 to 198. I rested for 15 min. and recieved an injection and got right back on it and went for 11 min and my rate didn't go above 145. I got ill the first time then after the shot the second go 'round felt fine. Of course I still had the residual headache from the first go round. Good luck with the beta-blocker but I didn't do well on them. It covered the rate but I still got ill. Everyone is different though so hopefully they wont label you "refractory to therapy" like they have me.I wish you the best!!

I really feel like the worst part of this illness is the emotional side! I have found that the more you allow yourself to dwell on the symptoms the stronger they get! For me as well as a few others I've read just allowing yorself to rest and relax helps alot. We didn't ask to be ill so we have no reason to feel guilty about it when we are. I also value this site tremendously because when I get really down I feel like I'm "bothering" my friends and family by "whinning" I mean I already depend on them alot and even though they love me and try to understand they really don't have a clue.Although I dont like to consider myself helpless every once in a while I think we all feel that way! Just hang in there and know that we DO understand how hard it is and feel free to contact me any time!! Best Wishes!!!!!

I've described mine as a floating feeling or like when we were kids and used to spin in a chair too long. Mine is usually strongest when my bp is falling, If you get a more medical reason or a way to stop it let me know! At least I know that I'm not just hyper-sensative to my body. Sometimes it's hard to tell if what I feel is POTS related or not.

I'm new at this so forgive me if it has already been discussed. Even though I am very thankful for my med. giving me about 2-3 good weeks a month, I still struggle through the time that's left until I can have my shot again. My everyday med usually (well mostly really) keeps me from passing out completely but I battle very strong nausea unless I lay with my feet elevated! I know I'm whinning but I'm tired of laying.If anyone has any ideas I'd really like to hear them.I'm also so new to this that I have a hard time dealing with the limitations that I'm suddenly faced with any hope that this will get easier?

It's nice to finally find a group of people who experience the same wierd sensations as I do! I never had much problem with extreme temperatures until pots and now cant seem to balance out. I'm one extreme or the other. I've noticed though that when I take proamitine that I freeze no matter what time of year it is!

purplefocus, I truly understand your situation I was removed from my position as a letter carrier for the USPS do to "inability to perform my job duties" this is a devestating thing to face when you truly enjoy your job. I was at least fortunate enough to have a medical retirement plan and have since been approved for SSDI.I'm 30 and hoping to get well enough to eventually work again but for now I thank God that I can support my family and that I dont have something even worse! Hang in there and pray alot and it will work out for the best.

I'm sorry it has taken me so long to respond! I'll answer as many questions as I can. Dr. Hoeldtke (in my experience) has a fabulous bedside manner, he understands the frustration of our illness. In order to contact him you can call his office at (304)598-4800 if the receptionist is rude make sure to mention it to him directly She answers for more than one Dr.! You can also call his secretary directly to ask about research at (304) 293-4125 ( tell them Deanna sent you )I agree that octreotide is more expensive than gold but to me it is more valuable than gold will ever be and I'm one of the lucky ones whose insurance actually pays for it! It is not an experimental drug but it is not linked to our condition yet ( that's the objective of the research) I traveled 270 miles round trip and the research reimbursed me for my mileage and hotel costs were paid as long as I was under research protocol.Dr Hoeldtke is an endodronolgy/ metabolism expert.The cardiologist that I was seeing refered me to him when it became obvious that I was "refractory to therapy" I provided him with my tilt table test results and the rest was done by him.I have benefited greatly from this treatment and hope this info helps someone else to also!!! Thank you for your interest and kind words!

I've been ill for two years now and through many doctors and testing. I found my current doctor at WVU physicians office center in Morgantown WV. His name is Dr. Robert Hoeldtke ( pronounced holdkey) he is researching the benefits of Octreotide either alone or in combo with Midrodine. I have completed testing and found it very helpful to me! I know ful-well the frustration that comes with this illness. I'm a single mom of 2 and before my illness I was a letter carrier for the US Postal Service. Of course as many of you know that's no longer possible! I went from walking 10 miles a day 5 days a week to being lucky to grocery shop without help! Finally thanks to my doctor's dedication and this new med. I have at least 2 good weeks a month. I'm still considered disable by the gov. but if I can take care of my children without as much difficulty then I'll take what I can get! I hope this info is helpful to others who like me have prayed for some relief for a long time. My doctor gave me the o.k to give his name because he needs the drug company to see the benefits of this drug on this condition. For me it's nice to have the ability to feel normal (not just o.k) some of the time. Even though there is no cure , some relief from symptoms makes it easier to cope with this illness.

I'm new at this , just completed research testing at W.V.U hospital using a new approach to relieve pots symptoms. I found it VERY helpful! The affect of my period is so profound on my condition that my Dr. wouldn't test me during that time. He says it's definite that periods worsen symptoms. In case anyone is wondering the drug is called octreotide and is injections. It's normally given for gastro-intestinal tumors but is very helpful in helping control my standing heart rate! I now have at least 2-3 good weeks a month! I'm happy to share this info. further with anyone who is interested!!!