Lisa ~ My brother is hospitalized with the same exact scenario as you, in fact this happened to him 2 years ago & they worked him up for almost 2 months and diagnosed him with POTS. They put him on beta blockers too...started with lopressor and switched to topranol. He was pretty much okay on the meds but in the evening would get the bad headaches and would have to lay down. However....the other day he started with the unncontrollable tremors and a severe headache and cannot sit or standup without severe dizziness or passing out. He is back in the hospital since yesterday and being worked up for a condition called Phenochromocytoma ( a tumor on the adrenal gland). They ran the tests and have put him on Catapress and Libiterol. They feel he may have a problem with his Autonomic nervous system which is basically what POTS is considered.

I would appreciate any info you can share with me in regard to your treatment since it sounds so similar to what my brother is going through.
I hope that they find a way to get you back to a good quality of life....if it is any help once the meds were regulated my brother did well until 3 days ago. I will search to see where exactly the Mayo clinic is...I believe it's in Ohio if I'm not mistaken. good luck & I look forward to your future posts....Goody :wave:

Quote from mngirl:

I should be an interesting next few weeks. Hopefully I will find some relief and get some more answers about all this. I still feel awully lost and that none of the docs really know what to do about it all. My Mayo doc says that he is more worried about me mentally than physically, imagine that? I do feel like I am going to crazy at some point, since getting no real answers is not the greatest feeling.

Well, i hope your brother starts to feel better. As afraid as I would be to have that done, I wish someone would at least maybe say that is an option versus having to live with all this crap. I can only take this for so long. Do is he on any of the meds he was on before the pacemaker? Are they thinking he will get rid of all the meds? Did they say what his chances of being back to normal are with that in? You will have to keep me updated on how his symptoms are doing.

I hope life gets better for him. This crap really sucks. It is also taking a toll on my family, as I am sure it has on yours. My 6 and 2 year olds can't really deal with this anymore.

Keep in touch. I will let you know if my ortho has anything interesting to say, or if I hear back from Mayo about my test results.

Have a great night - tell your brother to stay strong!

~Lisa

Thanks, Lisa, for your update. Geeeez, I really wish there was something I could do for you. Doesn't seem fair that you have to live this way. The more you tell me about your situation the more it sounds like my brothers :eek:

Prior to all this my brother was on lopressor and then switched to Topranol XR. Then things got worse to the point of his hospitalization.....the tremors were uncontrollable and the headache & inablility to walk without passing out. The started him on the Catapress (betablocker) & Lobiferol (antiseizure/for tremors) prior to the pacemaker. Now that the pacemaker is in place they can safely adjust the meds wirhout his pulse decreasing to dangerous levels while sleeping. Sounds like by what you describe in your post you may be going through the same thing.

Lisa, my brother has been told that he will pretty much be on these meds for the rest of his life. Seems the best that the docs can explain is that somewhere in his nervous system there is falulty wiring that causes this. He just seem relieved that they have found some meds to get him back to somewhat a normal life. I guess my family is use to these sort of things......somehow God has equipped us with extra serenity powers needed to have the courage to accept the things we just can't change and to make the best of it. But, Lisa, that doesn't mean sitting back and knowing that something can be done to make your life better...in your case I say do not accept that you physically have to live like this....I think your doctor should definitely be looking into ways of getting you to function better & I say if he remains closeminded to this then go find another doctor. My brother's condition was BAD.....unable to walk at all and he is convinced that this weekend he will be out shopping for his son's Communion outfit!!!!

You and your family are in my prayers. I will continue to check in here and offer you support and let you know of my brother's progress. I hope to hear some good news from you soon.....Goody :wave: