Jenn202

I have low blood volume and hypertention...People with ANS problems can have BP all overt the boerad..not just low BP..mine is actually high most of the time...

I'm able to drive although I do not faint..... I avoid bust highways..Probably a 1/2 to 1 hour drive is as far I can go...

I agree with Merrill you are probably severely dehydrated from alcohol.... I am sure alcohol is probably one of the worst things a POTS patient can drink...it dehydrates a healthy person... I cant even tolerate caffien b/c of its degydrating effect...canot imagine what alcohol would do to me! I would drink LOTS of Gatorade and salt.....or any elctrolite type drink. I hope you feel better.

Blood Volume issues are my biggest problem...if I could solve them I would be almost 100%..... My Dr is doing a genetic test on me that supposedly shows whether I am missing a certain Gene that controls Fluid volume..... I'll let you guys know how it goes... Other than that I have no idea why so many Dr's cannot understand just b/c yoru Blood work shows you have balanced electrolites , that does not mean you have ENOUGH BLOOD in your system..... Its funny how we all understand it..... I hope that this area had more research devoted to it......

I'm so glad you had a good Mayo experience and best of all got confirmation and answers!!

Thank you for your suggestions Tearose, blackwolf, sonshine and steph!! I truly appreciate them..... its good to know about the appt option....! In all of your opinions which hotel would be the nicest to stay in? I know there are many to choose from. We are not thinking about cost when it comes to the hotel...we will save in other areas b/c I agree where I stay at night is the most important..... Again, Thank you for taking the time to post your experiences Its strange that I am looking forward to going in a way... I guess it will either confirm or give me more answers, or maybe even different answers...we will see

Thank you everyone for your responses! Tearose would you happen to have a site with the "footless hose" ?? I would like to get those for summer. I have the thigh high's and I do notice a difference in how I feel with them on... I want to continue wearing them this summer so I am looking for a "cool" option....

I agree - I feel like this a lot... I have been through so much bad with dr's that I have the tendency to bring that skepticism with me.... Thanks for posting b/c we do have to remember that Dr's are only human, and we should give them some leway if they dont understand.. .......the ones that are insulting we should learn to let go of.... Thank for this post!

Patti - I agree that a referral is the best way.... But I think most important is to be agressive about needing to get in. I was on a waiting list since last month. I was told that it was a 90 day list, if I was not called by then I was taken off the list and I had to start over.... I called every week... I got the runaround, so I had my husband call..... He spoke with the internal medicine secretary,,,,, pleaded my case that is was highly important and could she do something to help us... 10 minutes later we got the call saying I was in June 1st... The other thing was that as the secretary looked up my last name she could not find it..she said they had mispelled it and b/c of that I would of probably never been called, but have gone through the cracks... SO all I can say is keep on them,... It did pay off for me.... How my visit will go is another story! Take Care.

Thank you Ernie, Steph, Ann, and sonshine! Steph - yes I will do a search on here for mroe info, I was not feeling well this morning so got I lazy I will bring the bug spray since I hate mosquitos or ANY type of insect... Lyme disease is enough to get from them lol Sonshine..good tip about appts!... so what I am getting is that even if you have an appt it does not guarantee you will be seen that day? Thank again guys.... I hope you have a good night

Thanks Danelle! How do you guys where them in the summertime? Would I be able to cut off the foot part or would that defeat the purpose?

I was wondering how many people on this board use compression hose and what level of difference you feel when you use them? I started using them on my trip to Dr Grubb and have seen a huge difference in how I feel.. I have been able to stave off IV fluids this month which is a biggy for me.

Hi Everyone - Mayo called this morning and I have an Appt June 1st....! I know there is lots of Mayo info on here, but I was wondering what the best hotel choice is for us, where we can eat, is there a grocery/health food store near the hospital, and just general information about the area. They said plan a minimum of 5 days there.... I'm a litle nervous b/c Dr Low sent my Info to Internal Medicine so that is where I will be going... I dont want to get the runaround there. Are there Patient advocate servises? Have any of you who have gone to Mayo used them? I just want to get things lined up so I know where and what to do when I get there. Thanks so much!!!

I love Dr Grubb and wish he were taking new patients.... I have been waiting on Mayo as so may others seem to be.... I dont know much about the cleveland clinic, although I did call them a while back and they seemed very nice....

Hi Nina - Hang in there! I admire all you do in spite of everything...it takes a very strong determined person to perserveer the way to are....and it actually gives me a boost to see what you accomplish! Its hard when we get in the "hole" to see the sunlight.... But we have to remember that it ALWAYS gets better. I hope your weeks off are restful.

I know Dr Gaito.. She is a good LLMD.. Although I did not suffer the psychological problems this girl suffered, I went years VERY neurologically debilitated by Lyme Disease.... 4 1/2 years to be exact.... I got the same runaround by Dr/so called specialists as the disease progressed... Treatment has given me a life back, but in turn LACK of proper treatment soon enough has caused all these new complications.... I just wish the medical community would open their eyes a little more... Anyway, Wonderful article !

Hi Ramekentesh - Yes It is all of thee above that you mentioned.... AGain from what I got from Dr Grubb's appt, we do not all have POTS for the same reason..... For instance Mayo clinic and Grubb just made a huge coorelation between people with hypermobility syndrome and POTS like symptoms.... In these epeople it is more a vascular problem then an Autonomic one... Although one can have several different things going on at once... For instance I have hypermobility, as well as being infected with Chronic Lyme....So I have a Vascular problem, on top of the Lyme Disease causing a problem in the connection between the hypothalamus and the brain....whihc does effect my ANS to an extent although not to the point some have.... I think this condition is SO complex, but I was happy to hear they have had some new knowledge this year......

Hi Gena and Ernie - I am going to mention this to my Dr when I see him too... At least to get it repeated without the salt....

I have had the tests as well but was taking salt when I had them... I was never told to stop any meds or salts.... It came back negative..... I wonder if it was properly done?

Hi Dayna - from what I understood the hypothalamus can be effected by many thingl such as a viral episode, bacterial episode ..in my case it was Lyme Disease that caused it... And a number of other things that I am forgetting....

According to my POTS Dr and at my recent appt with Dr Grubb they explained the hypothalamus was the main problem..... it is the epicenter of the Autonomic nervous system...it is in control of sending out all the signals from the brain to the different parts of the body ..it controls sweat, heart rate, BP, Fluid balance, etc... WIth the ANS system what is so complex is that just 1 signal can go to 15 or more places in the body. Hope this helps some!

I have been waiting on Mayo for a month now. My insurance will cover it, but I just recently called there and was told that Dr Low Forwarded my file to internal medicine, and I was on a 90 day waiting list ... If I did not hear from them in that time they take me off the lost and I have to go through the whole process all over again.... I am still deciding whether I want to go... I feel I got many answers from my recebt Dr appt... but from what I gather Mayo does a very large work up, and like steph has posted many times... A confirmation from Mayo clinic is something you can take with you to any Dr and it is accepted..... I would check with your insurance to see if you are covered. Do you have a Dr that can refer you? Good Luck

waves of nausea are very common for me... The ANS system controls the intestines..... I usually get it after eating... I also have an ulcer and find if I take Protonix it helps... Its a horrible feeling.... I hope you feel better.

Well I guess I will just HAVE to postpone mestinon!! LOL Steph - I think the reason Mayo missed it years ago is b/c they are just comming out with this research now.... At least that is what Dr Grubb said. There is a paper that will be published this year and made available to all dr'a about the connection between Hypermobility and Autonomic dysfunction like symptoms.... Dr Grubb is proof reading it now..... I also bet that is why Dr Grubb is putting you on Mestinon..it is the drug of choice for people with this problem..... Well maybe I wil get away with not having to start it... Although I really want to start feeling better, So I guess trials of different drugs are the only way we can find something that will work.... Keep me posted on Mestinon... Let me know if you get "brave" and take it

LOL! HI Steph - Ok I wont make you a guinue pig! I was just too chicken to take it! Anyway, I am kind of agreeing with you on Mayo... I hate to go b.c it will be so tiring.... But Like you said its validation on what Grubb said.... and I think my POTS Dr would be happier to have that validation... hmmmm... I was hoping I could take that money and go to the Bahamas instead! Maybe next year. I am wondering though if I start Mestinon or another drug, I am sure Mayo will want me off drugs.... I wonder if I should be waiting on taking it...... SO many dilemas! Oh one question: When you were at Mayo did they refer you directly to dr Low or were you referred to another specialty first? I called Mayo last week and Dr Low's secretary said he referred my case to internal medicine first.... I am on the waiting list there.. I am wondering why Internal Medicine... Dr Grubb thinks its b.c hypermobility is an IM dignoses and he wants them to evaluate me for it ......