how long for med work

[Jimmy]

I have been taking beta blocker and calcium blocker for several week no relief still have chest pains shortness of breath feels like a knife in my back right between my shoulder blades also at times it feels like my lungs are filling with fluid.heart feels like it running away doc say keep taking med come back in two weeks.I am new to hcm is this the way its always going to be .Its a everday thing no end in sight

Thanks
Jimmy

[HocumFocus]

Re: how long for med work

I would get back to your doctor quicker than 2 weeks if you are having bad symptoms... I know that Verapamil didn't really work for me and seemed to lead to chest congestion. Is that your cardiologist or GP?

[Jimmy]

Re: how long for med work

Its my cardiogist it seems like they think its no big deal as for me I am not use to staying in the house all but 2-3 hours a day this heart group is one of the best in Alabama.I just do not think they understand how much pain I am in as long as I do not move around I can tolerate the pain just any little thing I do brings on the chest pain and galloping heart and shortness of breath.Called the office to talk with the doc about it the nurse said you should not be feeling that bad with the meds you are taking.

[Frosty]

Re: how long for med work

They may be "one of the best in Alabama" but it might be time for you to look for a new cardiologist - sounds like they are not taking you seriously. Patients and doctors have to work together if there is to be an optimum outcome.

[YoungAtHeart]

Re: how long for med work

I think you should ask to see a heart specialist for Cardiomyopathy you need someone who knows about the disease and can teach you about it. It's not always going to be like this they just need to find the right medicine for you. I've had to put my foot down with some doctors too because some just don't understand - tell them you're suffering everyday and you must be seen as soon as possible to sort this out.

[Hugh W]

Re: how long for med work

Jimmy, I am on Verapamil and my cardiologist told me to stick with this to make it work through the side effects. Being stubborn I tried a little to hard and ended up spending time in an emergency clinic. End result was cutting back on the dosage and the worse elements of some of the side effects stopped. My lesson learned on being to stubborn to stick through and not listening to my body. You know what the current impacts are on you and need to push for resolution.

[mbcube]

Re: how long for med work

With HCM, we all react differently to the meds - what works for some, may not in all. Its not uncommon to go through a trial and error phase in finding the right dosage & mix, but if at anytime its not working or making you feel worse, then its obviously time for a change.
This is why we stress seeing and EXPERT in HCM preferably at a Center of Excellence. https://www.4hcm.org/hcm/finding-an-...pecialist.html
Keep us posted !

[Jimmy]

Re: how long for med work

Thanks everyone I going to have a heart to heart with the doc tomorrow this crazy feeling this bad all the time.How are the doc at emory compared to Cleveland.I want to go to the right place 3 hours to emory or ten to Cleveland clinic

[YoungAtHeart]

Re: how long for med work

Following what Hugh W has said - I've been on Verapamil for about 2 months now throughout those weeks they have been constantly increased. I'm alright for the first week then go downhill with a range of symptoms restricting me from doing day-to-day things. You're not the only one! Sometimes the docs need to play around a bit with the meds to find what is right for you. My sister was admitted to hospital once to change hers and with the 'better' ones they put her on she couldn't breathe!

Don't feel too stressed about it and when your body feels worn down rest it out.

Good luck

[Gail M]

Re: how long for med work

Keep pushing for a solution. I was on beta blockers at various doses for a year, and I kept telling my doctor the same thing - the symptoms were not getting better, but worse. Finally, he agreed that after a year that I was not responding to the beta blockers, so he put me on Verapamil. I've been on the calcium channel blocker for 3 weeks now, but I'm still not seeing any relief at all and experiencing increased chest pain. I just secured an appointment at the Mayo Clinic for the end of this month with Dr. Ommen. I am determined to find a workable solution to this problem, as like you, I am unaccustomed to such a restricted lifestyle.

Take care,

Gail

[Jimmy]

Re: how long for med work

Gail I hope you get good news I go back to the doc Friday we are going to get serious about this

[HocumFocus]

Re: how long for med work

Gail I hope you get good news I go back to the doc Friday we are going to get serious about this

That's great news, good luck. I (like most HCM'ers) have found that a great % of doctors and even cardiologists (while they may be great at dealing with 'traditional' cardiac issues) don't understand the intricacies of HCM and it's treatments. As mbcube and others have mentioned, there is no one gold standard for drug therapy for HCM and it tends to be a very individual thing. Also, there can be points where drug therapy can't help enough which is where I found myself last year. Fortunately, my cardiologist knew enough of HCM to get me referred to a specialty program for assessment and and three weeks later, I had my myectomy which has been a blessing.