I saw Dr Grubb yesterday

[yikespanic]

I finally had my appointment with Dr. Grubb yesterday. My appointment was at 4:00 pm. Early in the day his secretary called and told me they still hadn't received my records from Cleve CLinic! I called the Cleve Clinic and at first they did not want to give me my records, finally they gave them to me. What a hassle! They warned me that he would be running behind and he was. I was seen around 6:00pm, he appologized, I told him I was just so happy to be seen. He took time to totally explain POTS and it's effect on me. He had a beutiful power point presentation and broke down all the different aspects of POTS and it's related symptoms. I had never been to a doctor who took such patient time to make sure I understood and explained my questions and concerns. He said I do have POTS and it was probably brought on by that nasty virus I had back in Dec 04. The horrible anxiety feelings I have be experiencing are brought on by the adrenaline surges that my body is attempting to use to normalize my blood pressure. My mind was so full of explainations that this morning I can't remember everything. He gave me a RX for celexa, a small dose of 5mg to start. He said I may have insomnia for a little while, but thats a good sign. And should go away after a little while. I started it this am and I'm praying it works for me. He said sometimes adjustments and additions are neccessary, each patient is different, it's like making a tailored made plan just for me. He did say Dr. Fouad does excellent testing and was very satisfied with her results in the past. All in all I had a wonderful appointment and feel truly blessed to have been able to see him. I will be going back in 2 months for my followup. Today I feel a little less fearful and a lot more hopeful. He gave me instuctions to start off slowly and work on building up mussle mass in my legs as this is a very important part of treatment. He said swimming is very good, the pressure that the water puts on the body is simmialer to the commpression hose we wear! Exercising in water brings on less symptoms and enables us to be able to exercise. That's all my brain can remember right now, it's been on overload ! LOL I woke up with my eye swollen this am, now what, stopped at a med center after taking son to school--PINK EYE.

Kim

[dianaD]

That is great news. I'm also going through the process of getting an appointment with him.

Can you tell me if he said anything about your prognosis? There seems to be so much confusion on whether or not people actually recover from this. I, too, got mine from a virus, and I am just curious what his expert opinion is.

Were you diagnosed as "adrenergic POTS"?

Thank you!

Diana

[HoldOnToHope]

Thanks for sharing your story. Can you tell us what tests he did or what tests you had done prior to seeing him?

[yikespanic]

Hi Diana,

He told me the good news is that a good percentage of patients who's POTS were triggered by a virus do recover and they seem to do so in the 3-5 yr range. That did give me hope, I have 1 year 2 months in. You know he never used the term "adrenergic POTS" that I remember? I'll have to ask him at my next follow-up or maybe I'll ask his nurse when I call to check in about my med in a week. I did ask him if I had "Hyeraderenergic type POTS" and he said they would have told me this from my testing at the cleveland Clinic. That is if they did this test? I did have most of the symptoms of this type. I am going to double check with Cleve Clinic and see if this test was done. You'll be impressed by his genuine concern and how patient he is. Hope you can get in soon. I'd check every bit for cancellations, that's how I got in so soon. Someone cancelled right before I called.

Take Care

Kim

[

WI mom,

I had tilt test, blood volume/hemodynamic tests, isuprel C-V reactivity tests, 48 hr heart monitor test, heart stress test, heart ultrasounds, MRI of brain and neck, done in 2005 at the Cleveland Clinic by Dr. Fouad in Hemodynamic and Neuroregulation Lab/Syncope Clinic.

Kim

[mom4cem]

Great news. I hope this med helps you and you sound very encourage and that is great! It is wonderful to hear

[JaneEyre9]

yikespanic,

did you tell dr. fouad that you wanted to go see dr. grubb? were you getting any treatment or medications from her, or did she just run tests on you?

kristen

[Jacquie802]

Wow, I sure do hope that 3-5 year range is correct. I have had POTS since Aug. 2003, sooooooo my 3 year mark is coming up! I have been getting worse though as time goes on. I just drank a bunch of gatorade and water, and I am feeling a bit better. It gets soo expensive buying bottled water and gatorade. Has anyone else noticed the hole in their pockets that has been left?!

Did he say whether or not the POTS could return?? My doc said usually his pts will have a good 10-20 years and the symptoms return. He also said they may return if I get sick (viral infection, etc.).

Glad you had a great appointment!

Jacquie

[yikespanic]

Kristen,

I had all my testing done by Dr Fouad, she told me at the beginning that she is so involved in testing that she does not normaly see patients long term. She said she'd see me though. I did not tell her I wanted to see Dr. Grubb, I just sent her office an e-mail asking for a referral, and I mailed a signed medical release form to Cleveland Clinic's Medical Records Dept. Dr. Fouad did treat me and I had follow-up appointments every couple months after testing. She did prescribe meds for me, she took me off atenolol and changed to Metoproplol (spelling?) she advised compression stockings and I tried florinef. She also reccommended weight resistence to build muscle mass in legs. Dr. Grubb did tell me that I had my testing done by the best in her field, he said she is very through in her testing and he would never question her findings, she's that good. You just need to find someone to follow up after testing for long term treatment. I hope that helps.

Kim

[yikespanic]

Jacquie,

Hi, I hope it's true and you and I and everyone else in 5 years will all be better! I have been experiementing with different concoctions. I have been putting 1/8 tsp bio salt in bottled water. It is not as harsh as plain table salt and after awhile its not so bad as long as its cold from the fridge. I gained 5 lbs in a few weeks after starting to drink 8 gateraids a day. then it dawned on me to check the calories, it came to over 800 extra a day!!!! If I kept that up I'd get huge! Sometimes I'll take a gateraide and split it up to add taste to the other 8 bottles of reg water for a change. We were talking about getting a water filter on our sink so that we could fill our own bottles. There kinda expensive up front but over time it would pay off, we go through alot of bottled water, even my kids are big water drinkers, not into pop and stuff. I haven't heard that it may come back, that would be depressing .

Take Care,

Kim

[Ernie]

Hi,

Thanks for the update. I might be going to see him soon. It's nice to know that he is still the same person as when I met him 4 years ago.