no good treatment for non-obstructive hcm?

[Patricia]

Hello dear people of the forum,

I am wondering if it is true that there is no real good treatment for non-obstructive hcm patients. I have the "normal" complaints like dizzyness, heart beatings, shortness of breath and being very very tired. The medications (beta blockers) don't work out good for me, my blood pressure and heartrythm go down the 30 beats p.m. This is the reason that here in Holland (Europe) they can't do anything. My wish is to go to the Mayo Clinic in Rochester for a second opinion but the cardiologists in Holland think that is a waist of money. In their point of view there is nothing to do except treatment with medication for non-obstructive hcm patients. But my point of view is, in the Mayo they see a lot more hcm patients then the cardiologists here, so they will be having more experience and research. What is your opinion of this matter? Is it true that there is no real good treatment for non-obstructive hcms and is a visit to the Mayo really a waste of time and money?
Thank you all for your attention and the very best wishes from Amsterdam!
Patricia

[Reenie]

It's true that there are fewer options for non-obstructed HCM patients, but I wouldn't think that a trip to Minnesota would be a waste of time. They may be aware of other medications or other combinations of medications that have worked for other patients, especially since they've seen more HCM than the typical cardiologist. I hope this helps.

Reenie

[delfam]

I am too non-obstructive hcm patient but get obstruction with exercise and movement. I have a ICD that paces at 40 and shocks at 200. I am closely watched and think that coming here to the states is a good idea. My doctor likes me to be low for helping with chess pain. Good Luck

Joe Del

[Sarah]

I also have non-obstructive HCM, but beta-blockers work ok for me. There are a couple other medications that you can try --calcium channel blockers or disopyramide (a potassium-channel blocker) so see if you can reduce your symptoms.

Amiodarone and dofetilide are also potassium channel blockers, but are extremely strong and the first has many side effects and the second is very difficult in other ways. Both are used almost exclusively for atrial fibrillation.

It is a tough call about the Mayo. It is true they are the best, but it is also true that unless you have something that surgery or ablation can fix, there is nothing to do but try different meds to reduce symptoms, which you can certainly do where you are.

The thing with medications is that even the Mayo can only guess what will work for you. They MIGHT have a better guess than your local doctor, but not necessarily.

You really ought to talk to Lisa or the cardiomyopathy.org people or both as there are a coulple of excellent HCM specialists in England, and it would be much easier to start by seeing them, I expect (?) than to go hike all the way over here.

There is also a certain level of symptoms that no medication is ever going to eliminate completely.

I'm sorry that there isn't an easy answer.

[julie]

I wouldn't hesitate to go to a clinic for a second opinion if I was unhappy or in doubt of the opinion I had been given, particularly if the medication isn't working.

[Grecoeuro]

Patricia,

I was in the same situation as you. My pacemaker / ICD seems to help with energy and tiredness. The pacemakers keeps my HB over 55 which gives me more energy. Ask your doctor about one.

All the best.


Theo

[Lisa Salberg]

Pacing as a therapy for HCM is not recommended on its own. You must take a good look at the conduction system of each person to determine settings of a pace. In Theo's case it may be warranted to override a 'glitch' in his conduction ( I am making an assumption here and may be incorrect about this- but am using it as an example) - however if you have a normal conduction system it may actually cause more harm then good to pace your heart when it is not really needed. A study done a few years ago called the DAVID study showed that long term pacing in those with normal conduction systems can actually cause heart failure to happen.

Yet again I will say - we are all a little different-- talk to your doctors about ALL your options.

Best to all,
Lisa

[Grecoeuro]

Hmmmmm...

My Electrophysiologist told me that pacing causes no harm.. But he also told me that I can go out and play tennis after I got my ICD. I think I'll trust Lisa's word.

Please explain more Lisa regarding pacing and low BP caused by meds and how to figure out a good balance and risks?

Thanks

Theo