kay1964

The young girl that interviewed Dr Grubb, for her school project, is a good friend of our family.She lives in our area.she is the one that encouraged me to seek out dr grubb.i meant this wonderful patient of pots 4 years ago.it was hard for me to follow the video also.sorry I'm no help.she is a servre patient.has had implant put in chest so dr grubb can follow her closely.

For those interested in her story this appeared in our area on the news.google in fox carolina breaking news, then click on greenville local breaking news.then scroll to the story, NC woman says she was targeted for harassment due to handicap tag.the story at least gets the message of pots and eds out to the public.how wise of her to turn situation to postive to explain what she has.

Thanks, chaos and anabanana.my brain fog ans sympathic system had me going other places in my post.will ask my cardo to try midodrine.the problem is agin med sentative. Plus gi issues I get build up I think than I just go all over the place.even my beta blocker hav to be careful with.not only low bp like 70 over 50 but also gi problems start.but my cardo says we don't treat numbers but the patient.but I myself back off from taking it when I know bp is low.my heart rate at any given time on standing is 140.i know it sounds crazy but any meds I take I feel.the beta blocker is the only med I really have tried to stay on because it lowers the hr on standing.but that helps only one thing.hav flushing, ect....others...so hard to understand why if my son also suffering from the same form of dsyautonomia why meds intake don't effect the same way?

Thanks so much for the posting back.Yes I seen a pots doctor at vanderbilt went there twice.locally I have gastrologist,cardiologist, and an endocrinologist, and a neurologist.and my allergist.im keeping my cardiologist in the driver seat until I get to ohio.after vanderbilt vists my husband and son found doctor in penn fl.he was very helpful in explaining pots.dsyautonomia, as he called it stem into many other conditions and causes.which would entail many other test.his own condition of pots make appt very difficult for him to keep.also he is not taking any other patients and I have 30 year old son who is also suffering from dsyautonomia. He had tilt table test my doctor ordered it and with out med induced went to 150 from his lying at 72.he was put on pindolol and lexapro, and gabapentin for pain.we know hereditary dsyautonomia is there.we are also going for genetics testing.i wanted dr grubb in my doctors driver seat.my cardiologist agrees.i am more med sentative than my son.i have been on Paxil, zyrtec, tried also lyrica and cymbalta.see thourgh the years I was told, mitral valve, then cfs to anxiety, panic attack and many gastro poblem.the more surgeries I had in my life the worse I got.my meds includes my beta blocker, my stockings, staying hydrated. Staying mobile.encouraging my son to also join the forum.

Doctor In penn fl put me on clonidine hcl 0.1 tab twice a day and florinef o.1 daily.servre headaches after two weeks.he informd me that most of his pots patients toloerate it very well, but then he also feels I have mast cell.he stated to try for at least another 3 weeks, to see if the headaches went away.cardiologist took me off of that and the clonidine.only wants me on propranolol.has sent referal to toledo ohio to Dr Grubb.says we introduce nothing until then.just got out of hosp this week due to passing out hitting my head.sent me home with med bracelet so next time ones around me will know whats happening. Husband very worried.told waiting list for dr grubb long.my cardioloist took pics of my servre flushing and feet and legs servre bloood-pooling.and all my records hopeing it will rush the system.in the meantime trying to stay out of heat going to infusion center twice a week.

Hi,I'm the newby so thankful to the forum and all of the diffrent topics, stories, experiences.I'v been on my journey with pots my whole life.But I was one of the fortunate ones I know.And have known since 2007.My mother also suffered however she did not know.But I now have answers for me and my 4 adult children and my grandchildren.I'm still learning still seeking answers.Thanks to all of you.you are all inspirational to all.

Sorry, I'm a newbe, didn't realize.

Hi gemma, I just joined the forum. So sorry for what is happening. i to went too went to a major hospital wanted to see dr.a, but ended up with dr b.i to had heard this was one of the hospital that would be very helpful for uncovering the reasons for my dsyautonomia/pots.for me I had 7 hour trip.family at home husband with me expecting to find more answers. I was given dr. b, I knew of him from my reading of the studies done on pots and dsyautonomia.he was very cool, no warm manners.he seen me after all my test where performed. I had QSART test done.and the blood volume test.and the other u mention on the supine standing.but again remember when I did finally see him after my test where all done and two days later, we did not have all the results in.my tilt table did show increase in heart rate.that he look at I was at 150 right away.but remember I went there with a diagnosis already of pots.he basically told me you have pots.no cure, he said if I wanted to know why then I could sign up for six week study.even then we may know if mine was primary or secondary. He said salt tabs of course and beta blocker and of course fludco.i informed him I was a pots patient that was sensitive to meds.bad reactions.he informed me if I was not willing to take meds.he was not willing to work with me.i too felt very disappointed but grateful for the test. any test whether it be your sweat test, blood volume test, have done so that it is one more to prove your diagnosis. Have you ever had a tilt test what where those number? just because your number at that time did not go extremely high does not rule out dsyautonomia.even dr randy thompson in Pensacola, Florida whom after this I seen said you do not have to have positive tilt if there is such thing to have pots.dont worry even your qsart will tell them if you have peripheral autonomic neruropathy involving your sympathetic nervous system which is consistent with pots.and that test result won't come in until a couple of weeks later . I'm sure they will set you up with a email address so you can see your test result.your blood volume test good one shows the blood circulation in your body.stay positive its your journey to claim your illness. I went to see doctro randy thompson in Florida. He recommended dr grubb in Ohio. So onward for me and my answers for my journey. now I know my spelling not good I'm up past my bed time I have brain fog but hope I have made since.hope I have help. By the dr. Randy thompson is excellent docter but too has pots and cant see patience thats why I have to go to dr grubb.and its only for more answers on hereditary pots my 30 year old son and grand daughter.