Isosorbide: This has just been... - British Heart Fou...

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Isosorbide

Mutley20 profile image
21 Replies

This has just been increased to 40mg twice a day from 30mg twice a day. Despite the small increase I have started to get really bad headache which I can't shake off. Has anyone else experienced this and if so is it short lived? I also take verapamil and furosemide.

With many thanks,

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Mutley20 profile image
Mutley20
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21 Replies
Rainbow1961 profile image
Rainbow1961

Could i just ask why you were put on verapamil .

Mutley20 profile image
Mutley20 in reply to Rainbow1961

Vasospastic/microvascular angina (probable). Albeit I was also given Verapamil initially for migraine some 20 years ago which worked for that too.

Thanks for your reply.

Rainbow1961 profile image
Rainbow1961 in reply to Mutley20

Thanks just i have vasospasnm and they are wanting me to try verapamil .Do you get any side effects from it and more importantly does it help.im currently on Amolodapine .

Mutley20 profile image
Mutley20 in reply to Rainbow1961

Hi,

Verapamil has been very helpful to me. Firstly for migraine and now for angina. I have had swollen ankles which may be a result of verapamil but on the whole I have found it very useful.

Best of luck,

Fluffybee profile image
Fluffybee in reply to Mutley20

Hi Mutley20

I was on Amlodipine but that made my lower legs and feet swell up, I am now on Viazam it has helped with my legs/feet.

I don’t get headaches with my tablet meds but the GTN spray gives me a headache for a short time.

I also take a few others which I cannot think of at the moment but I’ll check later if you’d like to know ?

Fluffybee profile image
Fluffybee

Hi Mutley20 again 🤭

I’ve just looked back at your posts and seen your diagnosis. What did they do to confirm you had that condition.

I’m having an MRI stress test hopefully soon, I e been told by my actual cardiologist that as my main coronary artery is completely clear but ultrasound shows blood not getting through to my heart very well and abnormal ECG that is what he thinks it is, but having the test to make sure nothing else is going on as well.

Bit scared of having that done but need to sort myself out and get on with it !!!!!!

Mutley20 profile image
Mutley20 in reply to Fluffybee

Hi,

The diagnosis for me has been provided on the basis of examination and symptoms. Unfortunately my GP wont sanction the tests required to get a definitive answer as a I see a cardiologist out of area. Last consultation with cardiologist on Monday showed up high blood pressure so getting a 24 hour BP monitor. I have also been getting quite a lot of pain and cramp in my calves which may require a scan.

I was rushed to hospital about two years ago having been taken ill on a train with chest, jaw and arm pain. The angiogram was clear and I was told that it was most likely acid reflux. However the pain continued and I made an appointment to see a cardiologist in London who suggested that I had vasospastic and microvascular angina.

Good luck with the MRI stress test.

I have found this site to be very helpful.

All the best,

Milkfairy profile image
MilkfairyHeart Star in reply to Mutley20

Mutley20

Have you asked to be referred to St Thomas' hospital in London where there is a specialist in Microvascular and Vasospastic angina?

I had my angiogram with acetylcholine and MRI done at hospitals out of my area. I have never had any issues about any tests being refused by my GP.

I would contact your local Clinical Commissioning Group to ask for clarification about who gives permission for tests etc.

Mutley20 profile image
Mutley20 in reply to Milkfairy

Hi Milkfairy,

I live in Scotland and referred from London to Glasgow. I see an excellent cardiologist in Glasgow who has suggested tests but unfortunately my GP won't sanction tests outwith my area. The tests can be done in Glasgow but Lothian Health Board won't support the request and I can't get the tests privately. I am a bit frightened to rock the boat too much as it has taken a long time to find a cardiologist I trust.

Hope all good with you and thanks very much for your reply.

Milkfairy profile image
MilkfairyHeart Star in reply to Mutley20

The system in Scotland is different.

It seems crazy that Scotland has an amazing researcher into Vasospastic and microvascular angina Prof Colin Berry but people are unable to access his care and expertise.

Can you change GPs?

Do you feel able to appeal Lothian Board's decision ?

There is Prof Berry's and other research that has been incorporated into the latest guidelines about caring for us lot from the European Society of Cardiology.

eurointervention.pcronline....

I hope your headache gets better.

I am on 120mgs isosorbide mononitrate extended release once a day as well as GTN patches. The ' nitrate head ' usually lasts about 2 weeks but is worth getting through honest!

Mutley20 profile image
Mutley20 in reply to Milkfairy

Hi Milkfairy,

Many thanks for your post, I appreciate your responses and valuable comments. I will read the article you suggest. To be honest it has been a long road to get here and I am being very well looked after by the cardiologist in Glasgow whose treatment has been extremely helpful. While it would be nice to get a definitive answer I am happy to accept that I am being treated for the right diagnosis and glad that I feel so much better.

It is good to know that the "nitrate head" will improve. Thanks for that! I had some pain while walking this afternoon so held off with GTN fearful that it may make headache worse.

Thanks again for your response, really good to get feedback from you.

All the best,

benjijen profile image
benjijen

I take 60mg once a day. I get some headaches but I don't know if it's because of those meds or one of the others. I just know that since taking it my (unstable) angina attacks are far fewer so will carry on.

Mutley20 profile image
Mutley20 in reply to benjijen

Thanks very much for your reply. I will stick with it and hope that they improve.

All the best,

dunestar profile image
dunestar

I take 30mg isosorbide extended release in the mornings. When I first started taking it I got terrible pressure in my head but it went after a while.

Mutley20 profile image
Mutley20 in reply to dunestar

Thanks very much for your reply. The headaches seem marginally better today so will stick with it. It just seems strange that an extra 20mg twice a day has had such an impact. But good to hear that it got better for you.

Take care and thanks again for your reply.

Manhattan1 profile image
Manhattan1

hi.. i’m on 120mg of isorobide daily.. when this drug was first started i was on 60mg daily that was gradually increased to 120mg.. have mild/moderate plaque disease in arteries which was diagnosed by CT angiogram a few months ago.. Cardiologist originally thought i had microvascular angina but after angiogram results have now been told it’s angina and Ischaemic Heart Disease.. so far no adverse effects from Isorobide

Mutley20 profile image
Mutley20 in reply to Manhattan1

Good to hear from you and thanks for your response. Glad that you have not had any adverse effects from Isosorbide.

Take care,

Hi, I had the same problem, until I started taking my Iso just before I fall asleep. After the first couple days i haven't had a headache since.

Give it a try, it sure helped me!

Good Luck, Best Wishes!

Dusty,

Mutley20 profile image
Mutley20 in reply to

Hi Dusty,

Thanks very much that is encouraging. It will be a week tomorrow since I increased the amount. I will stick with it.

Take care,

Pandorella profile image
Pandorella

I was prescribed Isosorbide, had a continous terrible headaches for over 3 days and had to stop it.

Mutley20 profile image
Mutley20

Pandorella,

Thanks very much for your reply.

All the best,

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