Dr. Grubb Appt.

[casey311]

So I had my appt. with Dr. Grubb yesterday. I expected the wait...it was almost 3 hours. But well worth it. He really is a genuine, caring, compassionate physician who is there just b/c he wants to help his patients. He did the whole presentation on his computer and answered my questions and gave me some recommendations. He didn't look at my records so much as to just asking me how I felt and what my symptoms were. He adjusted my pacemaker and had me walk a little to see how I felt. I'm currently on Toprol, Florinef and Midodrine and he's not a big fan of Toprol so he wants me to try Mestinon and if that helps he's going to try and ween me off the Toprol. So we will see. I have horribl sleep issues so he said I could try Melatonin so I'm going to try that also before bed to see if that helps. Then of course he wants me to do the aerobic and resistance exercise too. But at the very end he suprised me and told me to take care of my relationship physically b/c 70% of divorces stem over sexual disturbances and it makes it really hard for him to treat his patients when they are going through other things. It was wierd b/c my fiance and I just had a huge argument on this topic b/c it had been a while since we were intimate and he just doesn't understand how tired I am. Dr. Grubb explained that men measure their masculinity through intercourse so if he's not able to show that then it makes them feel worse. I understand that. It just really seemed like he cared about me as a person and a patient and before we left he gave me a hug. So hopefully this Mestinon will help and also the melatonin so I can get off this Toprol. We shall see. My next follow-up is in 3 - 6 months and since I am from Missouri I will probably wait if I can. I am to see Beverly on my next appt.

[tinkerbella]

Hi there, I'm a new here in the posting and getting into things. I was wondering where is this Dr. located as I'm hearing about him a lot in posts? I take MESTINON LIQUID and the tablet form is called PYRIDOSTIGMINE 60 mg tabs. There are a few things you should know about this medication. When I went back one week later my skin looked like I had been to a tanning bed and even the doctor mention that all his patients on it has the pyridostigmine glow. It causes hyper pigmentation. Then another week went by and I mentioned I was having my irritable bowel act up so bad that I won't go into the details. Then he said, "I never knew you had that problem and that is part of POTS." I then started to get very distended and my belly swelled so that I looked 9 months pregnant. Pain was so bad that at hydration I had a near black out in the bathroom that scared me silly. BP was so high, belly pain so bad they admitted me. Admission showed, near bowel obstruction. Family all away and they are talking surgery on a weekend. Praise the Lord that I didn't need it after all, but was sent home several days later with them not knowing what was going on.

Oh, I was also been treated for abnormal vaginal bleeding and on a cancer med that exacerbated my POTS. Hormones and I do not mix, but back to the story. I went home and started to take my meds as usual when I looked at the pyridostigmine which is mestinon only in a different form and I realized the drug store was giving me the wrong doseage. I called the and told them, they said get to the ER asap and call posion control. I had been telling everyone I felt like I was slowly dying all that summer. I think I was I was being poisoned.

My point is my brain gets foggy on these meds always double check what dose they write on everything. Recheck with what your doctor notes you take home say. ????? everything it's your life. It took all summer for my body to readjust to to the mess up from such a large dose of med to the normal dose. I have bad side effects still but, I don't want a pace maker.

I started and I'm still on clonidine for the first drug of choice. Did your Dr. try that? I only mention that as I never slept until I tried that but, I can only take 1/2 of a pill at night and morning. It's not even a therapeutic dose. Also I never felt so calm in my life before, hence the dx of anxiety and asthma were all wrong before realizing it's was really pots. I try to stay away from melatonin as I was told if you have an auto immune disease it will bring it out, and I have a high ANA already. I try to get at last 1/2 hour of sunshine to get it naturally.

Maybe you and your partner can find a time of day when you are not tired to be to spark up your relationship. If you have a good man work something out as good men are hard to come by. If you see one let me know. I wish you bunches of luck on the new med. I'm my doctor's most challenging patient as he puts it. God bless my Cardio, and my Neuro. And especially my PC who put up with me all these years and now has dx 4 more cases of POTS since me, I'm sure she thought I was nuts. LOL!

wishing you the very best!

[Sunfish]

dr. blair grubb is in toledo, ohio @ University of Toledo Medical Center (formerly known as Medical College of Ohio &/or Medical University of Ohio). his contact info is under the physician listings on the main DINET site. generally it takes about a year to get an initial appt, you need a referral, etc.

re: mestinon (brand name)/ pyridostigmine bromide (generic name), there have been a LOT of discussions on the forum re: peoples' experiences; if you're interested a search by either name will give you more reading than you'll know what to do with!

hope this helps,

melissa

[tinkerbella]

Thanks Melissa,

I got mine in BOSTON, MA off the list and love her.

I'll search up the meds & wanted to say saw your blog.

What a GREAT JOB you did! You're an amazing person.

[Lizzegrl]

Casey I am soo glad you had a great experience with Dr. Grubb! It sounds like yours was on par with mine. My sister came with me and he answered all of her questions about POTS and symptoms I had been having all my life that she previously thought were overreactions or simply mental! It was so empowering to have someone validate the disease. It might be helpful if next time you take your fiance with you. It made a huge difference in my relationship with my sister to hear things from the doctor. It was also great to have someone to be able to fill in the blanks from things that I missed when Dr. Grubb was giving so much information!

[ajw4790]

Congrats on the great visit!

I hope that it proves to be helpful!!!