HCM-ers: Introduce yourself or just say hi

@karukgirl Debra gave good information here, as always. I've concluded that cardiologists have their special areas. It would in your best interest to ASK/research yours about HCM. I was fortunate to "be assigned" to a cardiologist with interest and experience with HCM when I was first referred with a murmur. On the website of the hospital system here (Albany Med), staff is listed by specialty with their areas of expertise and interest. I was taking verapamil before surgery. No symptoms for years, then suddenly I did with shortness of breath as the main complaint. At that time the verapamil was increased and taken till a few days before surgery. That resulted in a problem not even Metamucil or eating unsalted nuts could solve! I do remember soft coughing and was told it was a sign that my lungs were having difficulty functioning properly. I suggest getting the cough checked out and keep in mind that the effects of HCM vary from person to person.

@deedee1958, a cough like that does not sound like HOCM, I would pursue further why you have such a terrible cough. I found this online...it's long, but at the end under side effects it does list coughing bad enough to cause pink sputum. That's a bad cough!
https://www.mayoclinic.org/drugs-supplements/verapamil-oral-route/description/drg-20071728
I also found this online from AI:
"Yes, verapamil can cause coughing as a side effect, although it is not very common. If you experience persistent coughing while taking this medication, it's important to consult your healthcare provider."

It sounds like your cardiologist may not be totally up to speed on this condition.
On the 4hcm.org site they list COEs (Center of Excellence) in your state and you can look and see if you are near one.
I had COEs closer to me in California, but after doing my research I chose the Mayo Clinic in Rochester, even though it meant I had to fly across the country to be seen. But I was seen by the top people in the world for this condition.
I never regretted this decision.
My advice remains the same...learn as much as you possibly can about what you have living inside your chest and seek out the best care possible.
Don't settle.
This is your life.
HOCM can be mild and then what seems like all of a sudden you need open heart surgery or Camzyos. So stay on top of this.
All the beta blockers and calcium channel blockers do is lessen (to some degree) the symptoms. But they do not treat the cause. I had intolerance to every single one they put me on and it was so frustrating. Now after my septal myectomy I am free of every med except I take baby aspirin every day. It's is such a great feeling because I remember so well on some days I thought I may die. Like really. Just die from whatever was going on. It was scary to live like that!
When do you see your doctor again? You need to mention that cough!

Thank you very much for your reply I appreciated reading the link you added -- im not real sure how much my cardiologist knows about hcm -- he stressed how minor mine is which im thankful for -- when I saw the nurse practitioner she did say they were going to do frequent echoes to keep an eye on it im not sure if she said just how often I think maybe every 6 months. I think I was the one that first said the words HCM -- they had just described a thickened bottom of my heart and I looked it up and asked " is my diagnosis hcm???yes but minor. Is there a way to know if cardiologist is well versed in hcm? This cardiologist put me on verapamil and I don't have the chest pains at all now -- just the strange tiredness and the shortness of breath like you mentioned maybe from just tying my shoes. When it grips me it may be for a few hours or a day or 2 then when it disappears I can go about normal business and never even think about the all consuming " what in the world is wrong with me I can't even do this simple thing without resting and getting my breath!! Hey --- do you have a terrible cough with yours? I just wondered if my cough is related -- it's non productive -- and very intense !! I feel like I coukd black out -- i never have but feel I've come close a time or 2

Hello @deedee1958, and welcome to our little group here on Mayo Clinic Connect!
You ask a great question, and I am not an expert by any stretch, but I would say that most people with HOCM have these same symptoms.
And the weird thing is that there are good days when you forget you have this condition and days you think you could sleep all day and get short of breath just tying your shoes!
So in my opinion I think what you describe goes along perfectly with HOCM.

Have you had a chance to read some of the posts here on Connect?
Have you read this from the Mayo Clinic?
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
Or this from HCM.org?
https://www.4hcm.org/
I have another question for you!
Is your cardiologist up-to-speed on treatment of HCOM?
That is super important for you going forward.
HOCM can progress like any disease, and it's up to you to be your own best advocate and educate yourself on all you can about what you were recently diagnosed with.

In my case I was misdiagnosed for several years and by the time I was correctly diagnosed at the Mayo Clinic in Rochester (which is the leading Center of Excellence for treatment of HCM and HOCM) my heart was enlarged and failing and I needed open heart surgery.
Not to scare you! But it felt like it progressed from random days of good and bad to really bad in a short time period.
I'm so glad you are here and encourage you to get familiar with your HOCM...
When is your next echo?

Hi I was recently diagnosed with ohcm , tho they say it's very minor at this time. My question tho is even if mine is minor coukd it be the reason there are times im so short of breath I can't do any work? I thought im getting terribly lazy ! Then the shortness of breath let up and the days afterward I coukd work like I always did. The bad days I walk around in the house and im so wore out I can't get the job done I went to do. Could this be the hcm?

I have contacted Mayo ( step one) . Closest to me is Jacksonville. I have another name of Electrophysiologist in Mobile,Al. I am not saying ablation is the only answer, but multiple anti arrhythmia meds seem to increase symptoms of fluid overload or CHF. Thank you for listening!

@apdaye,
I am so glad that you get a feeling of "vindication" from other members here on Connect. I know for myself, it was wonderful to learn other people out there knew what HOCM was like. It feels good to not be alone.
How frustrating it must be for you to not feel you have the ear of the doctors you see...you know your body better than anyone and you should not settle.
It's great that at 66 you can still walk as much as do and mow your lawn...that can be exercise for sure, especially during spring when grass goes into overtime and you can practically watch it grow in front of your eyes!
I am not sure how many cardiologists you have seen for your HCM, but I would not let that stop you from seeking an opinion from another cardiologist.
Accepting your limitations is something we all start doing as we age. I wish I could do a cartwheel, and in my mind I can. But reality says do not attempt this, you fool!
You already feel like your doctors do not have an understanding of HCM, have you gone to a COE (Center of Excellence) like the Mayo Clinic or Cleveland Clinic? These both are top COEs for HCM/HOCM.
This is your life, and 66 is young in my opinion...

Hello @agustafs, and welcome to Mayo Clinic Connect.
@walkinggirl gave you stellar advise, and I echo what she says...it is a good question to ask your doctor.
HCM can most certainly cause SOB (Shortness of breath) and is a common symptom to many of us with HCM and obstructed HCM.
HCM may progress overtime and in the 30 years you have known you had it, it sounds like you have had a case where it has not impacted your life in such a way as to interfere with daily living. But things can change, and it is worth having your cardiologist involvement.
When was your last echo? Is your cardiologist well educated on HCM?

Alan, that is an excellent question - to ask your doctor! Our bodies change as we age, and new symptoms seem to appear periodically. Have you had an echo recently? That test would show if your left ventricle is thickening/enlarging causing shortness of breath. I think that if your doctor does not suggest an echo, be your own advocate to find out the cause of your shortness of breath and make the echo suggestion to him/her.

Hello. I have a pacer/defibrillator. Non-obstructive HCM. I have a low burden of PVS’s that sometimes go into vtach for several seconds. I almost pass out( never been shocked ). I have been put on multiple meds( which do not lesson these issues. The meds do increase swelling, suffocating sensations, and fatigue. Two electrophysiologists have refused ablation, stating “ hard to re-create the episodes and my heart muscle is too thick for his instruments”. I am still able to walk 3-4 miles 4 times a week and mow my own grass. I am having to accept my limitations at 66 and consider myself lucky in most respects. I really feel like the doctors here do not have an understanding of this disease. I feel vindicated when I read other’s comments.