P SUDIK

Hi , first I would like to welcome you to the Forum,(I would be lost without it) and wish you luck in finding the right dr. for you.I am still on that quest myself. Secondly I voted for Ed. Welcome again, Hugs P

Dionna, I love your What is a Potsy? post! It is creative and inspiring,it brought tears to my eyes. I want to thank you for taking the time to write it.It rings so true.I will certainly pass it on.

Oh and by the way, what is a potsy? It is me!!!!!!!!!

Love and Hugs Pat

My neurosurgeon recommened Dr. Jacobs, she said he treats POTS. I called his office they said he was an EP and that he does treat POTS. Has anyone heard of him or have been to him?

Thanks, P

Hanna, I take Maxalt,I could not take imitrex either. I have a low tolerance to meds.,but Maxalt got rid of my headaches and did not bother me,you take this at the onset of the migrane.I suffered with migranes for 25 yrs.,this is the only thing that ever helped. I hope you can take this and it helps,Lots of luck and love P

I have had a few I V's on and off mostly thru the ER. I have an appt. next week with my pcp, I was hoping somehow IV's could be done other than in the ER. Most of my docs,I think, send me to the ER too often, too easily.My cardio says "if you get an IV,you will just pee it out" P

I am drinking drinking drinking,and going going going. I drink alot of water and gatorade,I can't seem to keep any of it.I am feeling worse than usual and my usual is bad enough. Any suggestions would be really appreciated!

I would also like your input on diet sodas, I like some caffiene free diet sodas,are they ok for us ?

Thanks again for your help, P

Lavender,I would have to say yes in my case, I can not sleep without ambein. P

To me it's seems so ironic, we are warn out but can't sleep.I literally can not sleep without ambien. I am always revved up. Once in awhile even with ambein, I can't sleep. I find myself staying up later and later,because I'm afraid I won,t fall asleep! Hopefully, you and your doc. can come up with something safe that will help you. Best of luck P

Dionna ,I burn my hands so often,I have had one hand wrapped for over six wks,( a really nasty burn on the palm of my hand) It is really scarry,I tell myself be careful, the next second I'm picking up a pan unprotected! Hang in there and try to be careful P

Call whine11,I know I am whining,but give me a break! I'm so frustrated,I was there for over 2 hrs.,I could barely sit up I was so dizzy and nauseated. I was trying to explain how hard it was just for me to get there,she says "you look and seem like the same old you"referring to me before POTS. What am I supposed to look like? Thanks for listening and letting me vent . P S any suggestions to help get you thru the physical part of all these dr. appts. I am such a mess! P

Hi Everyone, I did ask about Detrol LA in a previous post,but I think the Detrol part go lost in the the main subject of the post.Any way I am so intolerate of meds.( like some many of us.) My doc. wants me to take Detrol,Of course I need to,I do have gastroparisis,though. The warnings say ,not to take if GI motility problems.So many meds have just made POTS symptoms so much worse. Your experience with Detrol or advice would be much appreciated. Thanks P

Elegiamore, I just came across this yesterday,so I typed in salt wasting and several things came up. The only things I know are florinef seems to help and it may come from brain trauma. I am still investigating. P

I just read about Salt Wasting on another dysautomia site. Has anyone been DX with this? It sound so much like part of POTS.( not being able to keep the salt in your system). Very curios, P

Dayna, have a wonderful trip,be careful,be safe and enjoy!!!! Love P

Jacquie, I am sending you warm hugs,good luck with dr. P

I love garlic, (i'm Italian) but it really bothers me, and Msg is a killer for me,even before I had POTS ,It gave me horrible migranes and chest pains, I thought I was having a heart attack. Also eating too much at one time ,really triggers my POTS. Now I eat many small meals a day, it works for me. P

Thanks, everyone for all your help! P

Pat57, I am trying to drink the same amount as before,am taking in less calories of course, I don't think I burn many calories,POTS is severe,keeps pretty inactive. P

Oh Karen,and everyone else, I sure hope none of you think this is a vanity thing, for me it is another medical problem and I am trying so hard to help myself,feel better in anyway I can. I have so little control over anything else these days. I hope this explains things a little better. P

When I first got POTS, I lost 30lbs.(I could afford to lose much more,just not that way).When I started salt loading,I gained all the weight back and more ,of course I was eating more also because we had my gastroparisis a little more in check.

I lost about 20 lbs. since beginning of this year. I am still chugging along and want to keep going,but I feel like it is all fluid I am losing,and feel even worse than usual. Now my dr. wants me to take Detrol,I need to,will I gain weight? I am afraid of side effects,anyone with gastroparisis ,take this? I guess the bottom line is Can we loose weight and keep our fluids? I sure would appreciate any input! Thanks Pat

I just had to chime in again,I guess this is not really about obsession,but frustration. Rhonda said as she gets older,some people are more understanding. I did not get POTS til I was 55,now 59. Until then I worked full time ,helped care for my ill mother,and had a social life. I was an incharge kind of person and pretty healthy and happy. Now I cannot do any of things and am ,like most of us totally different person. Whine whine whine. My point is that be older ,in my case, makes no difference to people understanding or being more tolerant. I am really sorry if this sounds negative,just trying to explain my situation. I am however grateful, that I had 55 good years. My heart goes out to all of you,whatever your situation,but especially all the youngsters.

P

Masumeh,I have had POTS for 4 years,and have a wonderful family and some really close friends,(I am grateful for this) Butttttttttttttttttt I really believe, even after 4 yrs. none of them "get it". I think that besides all physical problems we have related to POTS, The frustration in trying to explain myself is the worst, so I try not to do it much anymore. Thanks to all of you who do "get it" P

Danelle, Just wanted to say hello,I wish you well,I will pray for your recovery and the strenght to edure. Hugs and Love P

I know that lots of liquid and salt helps POTS and low blood volume. Just wondering if anybody gets any other treatments (besides IV).What about epogen? Anything else? I'd appreciate any help! Seems lately,I could use an extra boost. I do drink gatorade and am going to try pedialyte. Some of the other drinks ,mentioned here, I can't find in Oh. Thanks P

I had debilitating migranes basically starting in my 30's.(I am now 59,I know am old compared to most of you) Anyway ,in my 40"s my OB and Neuro told me " the good news is that maybe when you get thru menopause the headaches will stop". I never believed then, but they did stop,for the most part. I get one occasionally now,but before, I had at least 2 or 3 a month,they would last for days. In my 30's and 40's ,there was not anything that helped me,except compazine for nausea. about 10 yrs ago the dr.rx Maxalt, it was like a miracle,headaches were gone in 20 min. I still take it occasionally. If you can tolerate it, I would certainly ask your dr. about it.I have alot of problems with meds.,no problem with maxalt. Good luck Hugs P