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One More Week


Notgivinup
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I've waited a long time. I'm so scared and nervous. I know this is my last hope of someone being able to find the underlying cause of my POTS. I am been being treated as though I have MCAD, but it's never been offically dx-ed.

Though I've felt better on the H1, H2, & singulair protocol I'm still far from normal. And I don't even really know for sure if the antihistamines are responsible for me feeling better. Could be just time. It's now been over 3 years, since I got sick.

I know I shouldn't put all my eggs in this one basket. I'm terrified I'll leave his office with no more answers than I have now. Yet I'm hopeful? Sort of. I guess I don't really know how I feel. Fearfully hopeful, that's it.

Anyway, my neck and shoulders are killing me tonight. I'll update next week after I see him.

For those who pray. Please pray for me. Or if you don't pray, wish me luck!

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not,

Dr. Grubb is great. I first started feeling effect of POTS last summer, I was taken to the hospital after blacking out at work in September. I spent 22 days there getting tested, misdiagnosed, doubted and quetioned about my sickness. Luckily a doctor there did some internet research and contacted Dr. Grubb who had them perform a tilt table test. After hitting 180 beats per minute on the table, it was finally confirmed.

I have been almost completely bedridden with this, not being able to stand or sit for more than 5 minutes. I was able to get an appointment with Dr. Grubb in late November. I had to rent a compact RV with a bed for me to lay down in just to get to him from Long Island NY.

He is very knowledgable about POTS, He spent about 3 hours talking with my wife and I. He explained the history of the problem and asked about all my symptoms. When I told him I had questions for him, he said I'll answer them. I said I have 3 pages, he said I'll answer them. And he did. Every one.

How far do you have to go to get there? How are you traveling? Are you staying at the Hilton, he gets a big discount there. Be prepared, write down everything you want to tell him and everything you want to ask him. He will probably want a follow up in 6 months, so don't forget anything.

Mainly, don't worry about seeing him, relax and be yourself. The worst is over, you are going to start getting better now.

Frank

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not,

Dr. Grubb is great. I first started feeling effect of POTS last summer, I was taken to the hospital after blacking out at work in September. I spent 22 days there getting tested, misdiagnosed, doubted and quetioned about my sickness. Luckily a doctor there did some internet research and contacted Dr. Grubb who had them perform a tilt table test. After hitting 180 beats per minute on the table, it was finally confirmed.

I have been almost completely bedridden with this, not being able to stand or sit for more than 5 minutes. I was able to get an appointment with Dr. Grubb in late November. I had to rent a compact RV with a bed for me to lay down in just to get to him from Long Island NY.

He is very knowledgable about POTS, He spent about 3 hours talking with my wife and I. He explained the history of the problem and asked about all my symptoms. When I told him I had questions for him, he said I'll answer them. I said I have 3 pages, he said I'll answer them. And he did. Every one.

How far do you have to go to get there? How are you traveling? Are you staying at the Hilton, he gets a big discount there. Be prepared, write down everything you want to tell him and everything you want to ask him. He will probably want a follow up in 6 months, so don't forget anything.

Mainly, don't worry about seeing him, relax and be yourself. The worst is over, you are going to start getting better now.

Frank

Wow, Frank, never have I heard such encouraging words. Thank You so much.

Everyone on this board has been so nice and encouraging also, but your words hit me just right. It was everything I needed to hear.

We did find out about the hotel discount, we will be staying at the Hilton. He's almost 4 hours away from us. Not too bad, considering where other people have to drive from. I have been told about his perception of time. I'm prepared to hurry up and wait. LOL.

Frank, may I ask what kind of POTS you have? I've been treating empirically with antihistamines. We "think" I have MCAD and the hyper- form of POTS.

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Prayers for answers and strength! Let us know how it goes!

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  • 2 weeks later...

UPDATE: Saw Dr. Grubbs.

I didn't get as much out of the visit as I thought or hoped I would. He spent about an hour with me. During that hour he told me his wife's brain tumor is getting worse. I felt like he was very distracted by that, which I can't blame him.

I had sooo many questions. I came back with not too many answers. Don't get me wrong, he was very nice and sympathetic, I still think he's a great doctor and person, but he seemed to be very tired. I was his last patient. I saw him at 6:30 PM.

He does not think I have MCAD. I still do. I asked why then does zyrtec help me so much. He said it is a vasoconstrictor. Hmmm. BUT, I've tried midodrine and florinef, which both help constrict blood vessels, and they did not help me.

He also didn't or couldn't clarify if I had the hyper form of POTS. His exact words were, "Your blood work shows that you have it, but your clinical presentation does not support it."???? Soooo what does that mean?

I feel as though I have too much norephinephrine. (sp?). i wanted to try clonidine. Instead he gave me a coupon for 7 free provigil tabs. I took one today and felt nauseous and speedy. But my POTS symptoms were not too bad.

I just don't know what to think anymore. It's all so confusing. I wish he would of at least gave me a prescription for a test to rule out MCAD.

He did give me a hug at the end of our session and told me not to worry.

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Sorry you didn't get as much info or help as you were hoping for. I think it's been about a year since my med records were faxed there and I haven't heard a thing. That is such a big fear of mine that I'm going to travel all that distance and put my life on hold and get no answers or improvement. Even if they called now I'm not sure I would go. I feel you're frustration!! It helps some that he is friendly and sounds like he is sincerely sympathetic. If I traveled all that way though and felt like all I got was a hug, some sympathy, and a "don't worry" I would probably be an irate patient. Hope his suggestion does provide you with some improvement!!

Brye

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I'm sorry you didn't get as much as you wished from your appointment. I had an appointment with him, but it was canceled and I couldn't reschedule as I was moving to another state.

Would you mind sharing what blood work you had to figure out your type of POTS? Maybe some of us could ask our local PCPs and go from there? I wish I had more of a clue. But...not everyone gets an answer to that, either, and I guess you don't have one, either!

What meds are you on? I am on the H1/H2 medicines and they help. I was told it could just be my allergies (and my random hives) make my POTS work. So the allergies are MAKING it worse rather than MCAD. Not sure exactly how, though, but I still take the H1/H2 as it helps.

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i am sorry you didnt get too much out of it :unsure: but ill keep you in my prayers.

im pretty sure i have hyper POTS too but my cardiologist has not done too much testing for it because he feels like it would not be beneficial. He likes to throw drugs at me and then sees how i react. hopefully when i see my neurologist he will do some additional testing for it because i really would like to know if i do

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  • 3 weeks later...
Is Dr. Grubb better to see than the folks at Vanderbilt? How do they figure what type of POTS one has...no one has mentioned anythin like this to me. Why does it matter....are the treatments taylored to each type? If I got it after a virus what type would that indicate??

Thanks so much!!! ANy info is so helpful. :wub: Erika

Sorry so late on answering this Erika. I hope you read it. I had blood work that showed high standing norephinephrine. It was 900--something. Can't remember the exact number right now. Anyway, that is not normal. It means too much adrenaline--the fight or flight hormone.

Some doctors subtype POTS. There are different treatments for the different types of POTS.

I don't know if Dr. Grubb is better than Vandy. He is suppose to be the best, or at least one of the best.

Have you had blood work done? I'm sorry I haven't read too much about what you've tried. That's about all I can think of to tell you right now. Brain fog is taking over. Hope this helps a little.

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