Confused and frustrated : Hello! 37 and... - British Heart Fou...

British Heart Foundation

26,767 members17,582 posts

Confused and frustrated

rgalla00 profile image
rgalla00

Hello! 37 and just been diagnosed with CAS, after investigations for HOCUM which runs in my family. I have severe hemiplegic migraine which they think is the cause of CAS...perhaps??? I can't take beta blockers and have since been on dilatizem then nicorandil plus ivabradine which nearly blew my head off. I am now just on ivabradine and my symptoms are not under control, tired in pain and really scared I'm going to have a major cardiac event. i'm getting depressed and anxious about my symptoms and attacks and how they are making my life smaller. I was extremely active before and now I'm too frightened to train. Im used to hiking and open water swimming and such like. I have two lovely horses to ride, and two dogs and i can barely get down the road today to walk them. If anyone has any advice on training I would be very grateful.. I have asked my cardiologist twice and all i get is gentle exercise.... i have no idea how hard i can push. I am sorry this is such a negative first post...I am not normally like this but the past few months have taken it out of me.

2 Replies
Milkfairy profile image
MilkfairyHeart Star

Hi,

I acknowledge your sense of bewilderedment and anxiety about coming to terms with living Coronary artery spasms / vasospastic angina in your life.

I lived with vasospastic angina for 6 years. My small and large blood vessels, Microvascular angina and CAS. I also experience sensitivity to light, noise and the left side of my face and arm goes numb when I have chest pain. This is described as a migraine by a neurologist. I also live with Raynauds phenomenon.

Challenging to diagnose, treat and live with.

It can take some time to find the correct drugs to help you best.

Calcium blockers such as diltiazem or amlodopine are important to help prevent the spasms along with nitrates. No beta blockers for me either.

I use other stratergies to manage my anxiety such as Tai Chi, yoga and Mindfulness meditation.

I can now exercise and my capacity to do so is increasing. I can now swim for an hour, ride a bike and walk up small hills.

I started off very slowly. I keep a diary of my activity. The condition is very variable. It can be 2 steps forward one step back.

Learn what your triggers are usually emotional stress and the cold.

I can't do as much in the colder months. If I am nervous or anxious I have more pain.

The BHF has some information about MVA and CAS the conditions can overlap and have very similar symptoms.

How was your CAS diagnosed?

bhf.org.uk/publications/hea...

bhf.org.uk/heart-matters-ma...

bhf.org.uk/publications/hea...

Unfortunately very few Cardiologists have much knowledge about the condition.

If you have any chest pain stop. I can exercise I just get more pain in the evenings and at night when I have done too much.

I hope this helps!

JonathanH profile image
JonathanH in reply to Milkfairy

Your mention of numbness being considered migraine is really interesting. As I write this I have tingling and other sensations in various parts of my left side from head to my chest to my abdomen to my leg. I am due to start neurological investigations and it might be useful to have some relevant literature. I have in a quick search found references to an association between vascular disease and migraine, and that my symptoms conceivably could be those of a "silent" migraine (no headache) with aura - see e.g. gponline.com/migraine-vascu...

Are you aware of any better - more directly relevant - publications relating to migraine and CMVD?

Kind regards

Jonathan

You may also like...