Hypertrophic cardiomyopathy

[Trooper74]

I’ve just been diagnosed with Hypertrophic cardiomyopathy. This is a result of untreated high blood pressure over a long period ....

Anyone else been diagnosed with this condition and what day to day effects should i expect  ?

Please ...

Edited December 13, 2021 by Trooper74

[S-Westerly]

Be interested to know myself as I've had high BP for years.

[MikeHorton]

5 minutes ago, S-Westerly said:

Be interested to know myself as I've had high BP for years.

Are your GPs treating this I have issues and they have put me on meds the 1st I had side effects with ramipril but I'm on candesartan and fine and has bought it down. They had to bring my BP down as they have discovered I have a heart valve problem which I'm hoping they will be able to do something with as I'm struggling to do my job now. It's really important to sort blood pressure hope they are on top of it. 

[Trooper74]

15 minutes ago, MikeHorton said:

Are your GPs treating this I have issues and they have put me on meds the 1st I had side effects with ramipril but I'm on candesartan and fine and has bought it down. They had to bring my BP down as they have discovered I have a heart valve problem which I'm hoping they will be able to do something with as I'm struggling to do my job now. It's really important to sort blood pressure hope they are on top of it. 

This is the weird thing, I’ve had high blood pressure for years and years, and doctor after doctor has commented on it but never any treatment ...

The Clinician carrying out my cardiac ultrasound on Friday evening was stunned that i was not on medication ...

 

Edited December 13, 2021 by Trooper74

[S-Westerly]

I've been given amplidrine or something which brought it down. Now I'm on dietary restrictions and no salt.

[Mississippi Bullfrog]

When I went for my flu jab they took my BP which was sky high. They've since had me doing a daily monitoring which has shown it to be consistently high. No sign of what happens next 

 

My father retired at 55 due to high BP and was on medications. A year later he was medication free.

 

I'm 61 in January so I'm hoping they sort something out to keep it on track. I suspect it's the job trying to keep on top of endless changes to Covid rules that have sent it high at the moment.

 

 

[MikeHorton]

It's important to keep tabs on your BP I have bought a machine from  the chemist wasn't expensive. Just keep pressuring your GP if they dont sort it. I was lucky I had a good GP who kept messaging me for BP updates. As westerly has done reduce salt, after a while your taste buds adjust and I know its a pain but exercise in any format helps reduce your resting pulse and puts less pressure on the old ticker. I'm in a catch 22 atm high BP my genetic hyoerfamilial cholesterol is not responding to med even though doubled and these have put pressure on the aortic valve which they have discovered was deformed from birth. Getting older has only just made it noticeable and explains why my asthma meds never worked and we're constantly changed its not asthma its the heart not being able to get the oxygen round v well apparently. Make sure your GPs sort it gents

[Trooper74]

9 minutes ago, Mississippi Bullfrog said:

When I went for my flu jab they took my BP which was sky high. They've since had me doing a daily monitoring which has shown it to be consistently high. No sign of what happens next 

 

My father retired at 55 due to high BP and was on medications. A year later he was medication free.

 

I'm 61 in January so I'm hoping they sort something out to keep it on track. I suspect it's the job trying to keep on top of endless changes to Covid rules that have sent it high at the moment.

 

 

I'm 63 and run a high pressure engineering business which doesn’t help, also 4 young children in our care and a partially disabled wife all add to the mix.

I don’t pay any attention to covid anymore so thats not an issue.

I’m just a little miffed that this has never been picked up on before ... Commented on but never medicated .... slightly baffled as to why, as this possibly could have been avoided 

 

[Trooper74]

1 minute ago, MikeHorton said:

It's important to keep tabs on your BP I have bought a machine from  the chemist wasn't expensive. Just keep pressuring your GP if they dont sort it. I was lucky I had a good GP who kept messaging me for BP updates. As westerly has done reduce salt, after a while your taste buds adjust and I know its a pain but exercise in any format helps reduce your resting pulse and puts less pressure on the old ticker. I'm in a catch 22 atm high BP my genetic hyoerfamilial cholesterol is not responding to med even though doubled and these have put pressure on the aortic valve which they have discovered was deformed from birth. Getting older has only just made it noticeable and explains why my asthma meds never worked and we're constantly changed its not asthma its the heart not being able to get the oxygen round v well apparently. Make sure your GPs sort it gents

I suppose i’m lucky as i have low cholesterol and am diabetes free  ....

[MikeHorton]

Just phone your GP they can prescribe meds over the phone if they don't do face to face. Might get you to wear a 24hr BP machine for accurate readings 

[Trooper74]

27 minutes ago, MikeHorton said:

Just phone your GP they can prescribe meds over the phone if they don't do face to face. Might get you to wear a 24hr BP machine for accurate readings 

I've just supplied them, today, with a 7 day blood pressure diary .... hopefully that may start the process ....

[Yorky]

1 hour ago, MikeHorton said:

the aortic valve which they have discovered was deformed from birth. Getting older has only just made it noticeable

I had that problem, discovered totally by accident by my daughter.

Had a new valve fitted in 2016, not a pleasant experience but at least I'm still here

[MikeHorton]

12 minutes ago, Yorky said:

I had that problem, discovered totally by accident by my daughter.

Had a new valve fitted in 2016, not a pleasant experience but at least I'm still here

I'm hoping that will be what I have. Not really wanting an operation  but if it makes me feel better and able to do stuff without feeling breathless ill gladly take the risk. I've got another 9yrs in my job and the current management aint supportive if I can't pass the fitness test every year they will redeploy me. I'm hoping occ health will be able to offer some support doesn't help all adds to the stresses and wife still not given the cancer all clear so a lot on. Tell me more yorky hoping it gave you a new lease of life! 

[Bianco2564]

I've had to control my BP as part of my kidney care, in fact it was elevated BP that first alerted the docs to the condition.

I'm currently on 6 different tablets, two of which are to keep the BP down. I do have to juggle the quantity one of the tablets as its effect seems to be quite powerful with me, too much and the BP goes too low and I get postural hypotension, dizzy spell if I stand up too quick.

Eat well, cut out added salt or salty foods.

Exercise,  think you cycle a lot?

Don't smoke.

Lessen your stress levels.

[Mississippi Bullfrog]

4 hours ago, Bianco2564 said:

I've had to control my BP as part of my kidney care, in fact it was elevated BP that first alerted the docs to the condition.

I'm currently on 6 different tablets, two of which are to keep the BP down. I do have to juggle the quantity one of the tablets as its effect seems to be quite powerful with me, too much and the BP goes too low and I get postural hypotension, dizzy spell if I stand up too quick.

Eat well, cut out added salt or salty foods.

Exercise,  think you cycle a lot?

Don't smoke.

Lessen your stress levels.

I've looked into the usual advice to lower BP on the British Heart Foundation website:

 

Regular exercise - I walk down to the river and back several times a week. That's between 3 and 5 miles depending on which way I go.

Keep to a healthy weight - my weight is about right for my height and hasn't changed for years. I'm 5'10" and take 36" waist jeans.

Healthy Diet - my wife is a really keen cook and is very careful on what we eat. Very little processed foods other than a pizza on a Saturday evening

Cut down on salt - we've never used salt in cooking or have it on the table at meals

Alcohol - intake is moderate. I'll share a bottle of wine at the weekend, and probably have the odd pint some weeks.

 

So I can't see much else I can do to reduce my BP by the usual routes.

 

Unless anyone knows anything different?

[MikeHorton]

1 hour ago, Mississippi Bullfrog said:

I've looked into the usual advice to lower BP on the British Heart Foundation website:

 

Regular exercise - I walk down to the river and back several times a week. That's between 3 and 5 miles depending on which way I go.

Keep to a healthy weight - my weight is about right for my height and hasn't changed for years. I'm 5'10" and take 36" waist jeans.

Healthy Diet - my wife is a really keen cook and is very careful on what we eat. Very little processed foods other than a pizza on a Saturday evening

Cut down on salt - we've never used salt in cooking or have it on the table at meals

Alcohol - intake is moderate. I'll share a bottle of wine at the weekend, and probably have the odd pint some weeks.

 

So I can't see much else I can do to reduce my BP by the usual routes.

 

Unless anyone knows anything different?

 No that sounds sensible I'm sure it would be a lot higher if you didn't take the steps you have. Hopefully some meds will help too in your case

[Trooper74]

8 hours ago, Bianco2564 said:

I've had to control my BP as part of my kidney care, in fact it was elevated BP that first alerted the docs to the condition.

I'm currently on 6 different tablets, two of which are to keep the BP down. I do have to juggle the quantity one of the tablets as its effect seems to be quite powerful with me, too much and the BP goes too low and I get postural hypotension, dizzy spell if I stand up too quick.

Eat well, cut out added salt or salty foods.

Exercise,  think you cycle a lot?

Don't smoke.

Lessen your stress levels.

Good advice and appreciated B ..

Eat well ... I try, but cooking dinner for 6 every night gets problematical  ..the age range, 63 - 4 makes cooking a task ..

200 miles a month until the Transient Global Amnesia event stopped all exercise.

Never smoked.

Stress ..mm .. I own and run a small engineering company that is world leader in traction control systems for rail vehicles ... i have 31 staff whose monthly bills  rely on me doing my stuff .... even with delegation i’m still buried in a world of stress ...

 

But your right ... choose life ..... 

Really appreciate all the input ....

[Stu]

4 minutes ago, Trooper74 said:

i have 31 staff whose monthly bills  rely on me doing my stuff .... even with delegation i’m still buried in a world of stress ...

 

Sell up and be a consultant and enjoy the money you make out of it? 

[Trooper74]

SO ... Visit to the GP this afternoon ... 2nd in 7 days face to face ....
And the short term result is;
Amlodipine 5 mg
Atorvastatin 20 mg
Doxycycline 100 mg
Flixonase nasal spray

So from no meds to this lot ... and i can go Cycling and  Motorcycling !!!!! 
Result  ..

[Pie man]

Well that's a good outcome, all things considered 

[Mississippi Bullfrog]

2 hours ago, Trooper74 said:

SO ... Visit to the GP this afternoon ... 2nd in 7 days face to face ....
And the short term result is;
Amlodipine 5 mg
Atorvastatin 20 mg
Doxycycline 100 mg
Flixonase nasal spray

So from no meds to this lot ... and i can go Cycling and  Motorcycling !!!!! 
Result  ..

You got to see a doctor! Blimey, round here you have to have been dead six months before you stand a chance of a face to face appointment.

[Akay17]

Sorry to hear about your diagnoses but it’s a positive you now have a diagnoses as this condition often goes undetected, only found once it’s too late. My brother was diagnosed at 10 years old with hypertrophic cardiomyopathy. My grandmother suffered from it, and due to it be passed on through a genetic mutation, we were scanned yearly as children. My dad was told he didn’t have it, which we’ve now found out isn’t the case, he must carry the mutated gene, however it hasn’t yet developed any problems, his heart is larger than normal but he’s a tall/broad 6ft something man so isn’t too worrying. My brothers heart thickness was irregular but did not grow much over his younger years, so he was on beta blockers, the didn’t go down well as he put a lot of weight on and got him down mentally . He didn’t display many symptoms of this affecting him so he stopped tablets as a teen, worst mistake he made. No treatment combined with an unhealthy/risky life he is now 32 years old and recently had open heart surgery due to an major obstruction, left any longer he wouldn’t have made it. He also had a internal defibrillator fitted, however due to his age this is a side one, less complicated if needed fixed or changed later in life. I show no signs at all so continue scans to check, these are every 5 years as my doctor won’t agree to genetic mutation testing, which is a total pain in back side as it feels like a waiting game to see if symptoms appear or not. With all that said, our family live a very normal life. My dad and brother are very avid bikers, total thrill seekers. They haven’t let it stop them doing anything, some they were advised against. My only concern is it being genetic, so if you’ve got it, it’s likely one of your parents did, therefore possibility as sibling also contracted the mutated gene, it’s 50/50 chance, however more likely in males. You should discuss this with gp, and advise anyone possibly affected to get tested. They can do this by speaking to gp, explain situation and they will refer them to cardiologist. Hope this helps, and you keep in good health 

[Trooper74]

5 hours ago, Akay17 said:

Sorry to hear about your diagnoses but it’s a positive you now have a diagnoses as this condition often goes undetected, only found once it’s too late. My brother was diagnosed at 10 years old with hypertrophic cardiomyopathy. My grandmother suffered from it, and due to it be passed on through a genetic mutation, we were scanned yearly as children. My dad was told he didn’t have it, which we’ve now found out isn’t the case, he must carry the mutated gene, however it hasn’t yet developed any problems, his heart is larger than normal but he’s a tall/broad 6ft something man so isn’t too worrying. My brothers heart thickness was irregular but did not grow much over his younger years, so he was on beta blockers, the didn’t go down well as he put a lot of weight on and got him down mentally . He didn’t display many symptoms of this affecting him so he stopped tablets as a teen, worst mistake he made. No treatment combined with an unhealthy/risky life he is now 32 years old and recently had open heart surgery due to an major obstruction, left any longer he wouldn’t have made it. He also had a internal defibrillator fitted, however due to his age this is a side one, less complicated if needed fixed or changed later in life. I show no signs at all so continue scans to check, these are every 5 years as my doctor won’t agree to genetic mutation testing, which is a total pain in back side as it feels like a waiting game to see if symptoms appear or not. With all that said, our family live a very normal life. My dad and brother are very avid bikers, total thrill seekers. They haven’t let it stop them doing anything, some they were advised against. My only concern is it being genetic, so if you’ve got it, it’s likely one of your parents did, therefore possibility as sibling also contracted the mutated gene, it’s 50/50 chance, however more likely in males. You should discuss this with gp, and advise anyone possibly affected to get tested. They can do this by speaking to gp, explain situation and they will refer them to cardiologist. Hope this helps, and you keep in good health 

Gave my sister in Ireland a ring and put the fear of god in her ... ,, She’s off to her GP on Monday .... 

I’ve already given up the statins after just 3 days due to the intense pain in my left leg ... GP warned me of the possibility of muscle pain and told me to stop if it became high level ... Unfortunately our GP’s are now no longer doing health care for patients until January as they are now a NCS rather than a NHS provider .... by government decree...

Edited December 17, 2021 by Trooper74

[S-Westerly]

Know what you mean. I'm supposed to get a blood test every six months to monitor a condition.  So far it's almost 10 months since my last and going to be January at the earliest. Haven't any symptoms of problems but by the time I do it could be a lot more serious.  Hey ho.

[Trooper74]

Phoned up a local GP’s as ours is not seeing patients until January ... see previous post .. and explained the issue with the statins ..

1 HOUR LATER ... my 3rd face to face GP appointment in 10 days ..... !!!!!

Her advice .... “Stop taking them” .. thats it .... no replacement just "stop taking them ” ...

Wow, medical degree for that ... I’d sort of worked that one out myself ....

But respect for seeing me .... 

I’ll wait until January when my GP’s reverts to NHS from NCS ...