Cardiologist has lost it or I'm not getting it.

[Sushi]

Thanks Sushi,

...

Have just started the BB he prescribed, 12.5 of Metroprolol 2x a day. He’s going to do another TTT on the bb in a few months and add a drug during the test. Not sure what the purpose of this is? Anyone have any idea? Was very brain fogged during my last appt.

The Cardio rehab would start after being stable on a BB for many months.

Just feel lucky to have found this doctor! Makes me smile because when I’ve seen him, he always asks “What do you think?” Geez, how many doctors ever ask that!

Bright blessings...

Hi Questus,

Yes, this doctor does sound like a great find! Best wishes with this.

The second TTT would be to see how the BB is working to control your dysautonomia. Usually if they inject a drug during the TTT it is to stress your body's ability to stand even more--thus another test of your medication's efficacy.

Keep us posted!

Sushi

 

[Questus]

Hi Questus,

Yes, this doctor does sound like a great find! Best wishes with this.

The second TTT would be to see how the BB is working to control your dysautonomia. Usually if they inject a drug during the TTT it is to stress your body's ability to stand even more--thus another test of your medication's efficacy.

Keep us posted!

Sushi

Sushi,
That makes a lot of sense. Well put.

I had thought he might be doing it to check for a subtype of POTS, but it makes sense that a second TTT with one of the drugs injected would test how the BB is working, and maybe lead to information on a subtype as well.

Thanks for sharing that Sushi. It was really puzzling to me.

Found a good site that explains how different BB's work for POTS. Some block B1 and B2 receptors, and some block B1 receptors only. Some block both beta and alpha receptors. (This may be of interest to XKS201, as he mentioned Carvedilol.)

The site that explains the differences in BBs used to treat POTS http://www.medicinenet.com/beta_blockers/article.htm

Also found an interesting video with Dr. Grubb talking about POTS subtypes.

Bright Blessings

 

[Sushi]

Sushi,
That makes a lot of sense. Well put.

I had thought he might be doing it to check for a subtype of POTS, but it makes sense that a second TTT with one of the drugs injected would test how the BB is working, and maybe lead to information on a subtype as well.

Thanks for sharing that Sushi. It was really puzzling to me.

Found a good site that explains how different BB's work for POTS. Some block B1 and B2 receptors, and some block B1 receptors only. Some block both beta and alpha receptors. (This may be of interest to XKS201, as he mentioned Carvedilol.)

The site that explains the differences in BBs used to treat POTS http://www.medicinenet.com/beta_blockers/article.htm

Also found an interesting video with Dr. Grubb talking about POTS subtypes.

Bright Blessings

Thanks for sharing this excellent video of Dr. Grubb. Unfortunately I heard recently that he is ill and may not be practicing right now. Maybe you could post this video in the mast thread as well?

He was only talking about POTS, but some of us have OI without POTS--our heart rates don't go up, but our blood pressure continues to drop when standing. This is what my TTT showed.

Best wishes,
Sushi

 

[Questus]

Thanks for sharing this excellent video of Dr. Grubb. Unfortunately I heard recently that he is ill and may not be practicing right now. Maybe you could post this video in the mast thread as well?

He was only talking about POTS, but some of us have OI without POTS--our heart rates don't go up, but our blood pressure continues to drop when standing. This is what my TTT showed.

Best wishes,
Sushi

Sushi,

Glad to post it on the mast thread, but I'm not sure where it is? I'd like to read it.

 

[Questus]

Thanks for sharing this excellent video of Dr. Grubb. Unfortunately I heard recently that he is ill and may not be practicing right now. Maybe you could post this video in the mast thread as well?

He was only talking about POTS, but some of us have OI without POTS--our heart rates don't go up, but our blood pressure continues to drop when standing. This is what my TTT showed.

Best wishes,
Sushi

Sushi, Forgot to ask...I knew Dr. Grubb struggled with renal cancer a few years back, (his wife, also an M.D., had cancer as well), but does anyone know if he is in fact unwell again, and not practicing right now?

 

[Sushi]

Sushi, Forgot to ask...I knew Dr. Grubb struggled with renal cancer a few years back, (his wife, also an M.D., had cancer as well), but does anyone know if he is in fact unwell again, and not practicing right now?

I friend who is his patient told me about a week ago that he is sick now--but I haven't verified this.

Sushi

 

[Sushi]

Sushi,

Glad to post it on the mast thread, but I'm not sure where it is? I'd like to read it.

Here is a link: http://forums.phoenixrising.me/inde...-disorder-hypothesis.18437/page-5#post-301358

 

[taniaaust1]

Im so happy for you that you found a great doctor. Sounds like he's doing everything right.

Are the BBs help or not? (my CFS specialist says he hasnt had much luck treating his POTS patients with BBs). Im still needing more POTS treatment and not sure what to do or try to get next for it (I havent been able to talk my specialist into saline IV thou I have low blood volume kind of POTS..along with having hyperadrenalic kind).

 

[Questus]

Thanks Tania! Hope you're able to get some help with saline IV's. I know that's been a concern.

Sushi, maybe I should put this on the mast thread. Pls let me know if you see a better place to post it. Am tired and just trying to respond. Brain foggy.

Wanted to share my experience with BB's. First was atenolol. BP went to 80/40. Recently I mentioned I tried metoprolol. BP went to 70's over 50's. Stopped last week. Felt worse than ever.

Went back to cardiologist today. He is suggesting it's MCA Hyper POTS.

I thought I would have to walk the cardiologist I'm seeing through this maze of symptoms but it was amazing. He got it. I started by telling him about the flushing and the vomiting, the other mast cell diseases I have, and showed him the script for the tryptase test the immunologist had ordered which I hadn't done yet.
Anyway, he said "We need to do an epinephrine and metanephrine level test, a cortisol level, and a plasma histimine tryptsase test." ...And we may have to do a 24 hour urine test.

Was amazed and impressed. Don't think he's ever treated a case of MCA Pots before, but he sure knows what to do. No hesitation whatsoever.

I found a form with percentages that Dr. Grubb published, and on it it had all the different symptoms of MCA hyper POTS. (I promise to find it and cut and paste..Too tired right now, but will do it.)

On the form with all the symptoms of MCA hyper POTS...Things like vomiting, headache, difficulty sleeping....It came to high BP (forget the medical term) and ONLY 38% of MCA hyper POTS patients have high BP! Thought that was odd. I checked off all the symptoms I had in a bright felt tip pen, and he locked on that and put it in my file.

So yes, low BP POTS patients can be in the MCA Hyper POTS subgroup. But my 'low' BP gets crazy too.

Strange...At his office today his nurse took my BP and said, "that can't be right"...Let me try the other arm. I laughed and said, 'right it down' It will be right. It was 145 over 70. Crazy...So guess mine swings like a monkey in a tree.

He explained today (much better than I could) why cardio therapy works for POTS. He says it takes a long time, but like he explained why. Am tired and wouldn't do it justice to try and explain it now, but will try and do his explanation justice when I can think straight and look at my notes.
I'm nowhere near being ready for it, but wanted to let him know that I'm game. He explained how and why it works.
I want to put POTS in a position where it doesn't control me, but I have some control over it. Like a chess game, I don't want to give it an advantage if there's a move I can make to give me the advantage. Think H1 and H2 blockers are going to be my meds, but I've done a lot of reading and all the experts recommend reconditioning the heart. I'm glad this doctor isn't saying 'go do something cardio'...He's recommending cardio rehab which has been around for years for heart patients.

Hope ALL POTS and OI patients can get some good advice from someone they trust!
Best...

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[Allyson]

WOW, trampoline would be the last thing I would try for POTS. With Tachycardia, it would be awful.

actually I love trampolines; I thinki it is because the rebound gets the blood up to the brain again or something; I think those aeoro pilates machines where you lie flat and bounce would be great. However that said I don th adv a trampoline but I tried very hard to find one hnear me I could use but to no avail; it s few years since I ve been on one tho so not sure if it would still work and i fcan t recall whether I crashed the next day after using it ... I think I did.

Sitting on a fitball and bouncing up and down is supposed to be good too - Iheard it send your CSF up to your brain I heard...anecdotally