Coronary spasm and face/neck numbness

[Acompletesurprise]

I was diagnosed with coronary spasm earlier this year with the spasm bringing about a heart attack. Coronary spasm was diagnosed during the angiogram. After several months the medications seemed to be settling down with the spasms diminishing once I had been prescribed Isosorbide Mononitrate. But throughout this period I would have instances where my nose and mouth went numb (a bit like recovering from an injection after seeing the dentist) with a persistent tingling pain going down to my chest from my jaw with the tingling also around my ear and behind my eye. This happened if I over exerted myself.

I was on Ramipril from the very beginning of the treatment following the heart attack. But this gave me a nagging cough. I saw a cardiologist privately (impossible to get NHS appointment) and he suggested that the ramipril be replaced by losartan. This was put in place about 3 weeks ago.

The good news is that the coughing ceased.

The bad news is that the numbness around my mouth and nose persisted as did the tingling pain going down from my jaw to my chest. This is now present all the time and not linked to over exertion. I tried doubling the losartan dosage (25mg to 50mg) but this hasn't really made a difference.

My question is whether the numbness is linked to the coronary spasm. In my mind they are all linked but the cardiologist thought the numbness in the face was possibly migrainous in origin. I have never suffered from migraines in the past and it seems too coincidental for the two symptoms to be triggered at the same time.

I have an appointment with my GP tomorrow to discuss this but in the brief telephone conversation this morning his mind went towards nerves.

[Rachmaninov2]

I had a migraine and numbness around my nose and mouth just before I had a heart attack a couple of months ago. Also had a migraine immediately after the angioplasty and more for several weeks after. I hope your appointment with the GP tomorrow goes well.

[Acompletesurprise in reply to Rachmaninov2]

Thank you for finding the time to share your experience. It all helps me understand!

[Tos92]

Hi Acompletesurprise

I’m sorry to hear about your recent symptoms.

I too had a coronary spasm which triggered a heart attack last year as a result of a congenital heart defect known as myocardial bridging.

I have not read anything on medical sites or come across medical literature to say numbness is associated with coronary artery spasms however, I have heard of people experiencing numbness with/after their spasms from their lived experiences with this.

I do know that there is a possible link between coronary spasms and migraines as there is evidence of this in some of the medical literature that I have read.

I hope your GP can help further tomorrow.

Let us know how you get on.

All the best.

Tos

[Acompletesurprise in reply to Tos92]

Thank you - you have helped inasmuch that there may be linkage between the two.

[Milkfairy Heart Star]

Hello,I have neurological symptoms with my episodes of coronary vasospasms.

The left side of my face and arm become numb. I am very sensitive to light and sound, I also have an ice pick headache and pain behind my left eye.

I see a Neurologist who says my symptoms are related to my vasospastic angina and Raynauds Phenomenon. All are vasomotor disorders.

My Neurologist describes my symptoms as being migraine like. I have botox treatment which helps. If you have vasospastic angina the other usual treatment for migraines are contraindicated.

Has your Cardiologist suggested a calcium channel blocker to help prevent your vasospasms?

I am also prescribed an antiplatelet.

Perhaps ask your GP to refer you to a Neurologist?

Why as patients, in particular women, always being told it's your nerves 🙄

[Acompletesurprise in reply to Milkfairy]

Thank you - I just knew you would find time to answer my question. Yes, I am on calcium channel blockers - Diltiazem 240 mg a day. But this alone did not stop the attacks - it was only when I started taking isosorbide mononitrate that the early morning attacks which woke me from my sleep stopped. But these have stopped but the face/neck have not stopped. And these have got worse since I stopped taking Ramipril.

[Milkfairy Heart Star in reply to Acompletesurprise]

It sounds as though you need to contact your Cardiologist for a review of your medication. There are other medications that you can try.

The botox is the only treatment that has helped with my neurological symptoms.

It still may be worth having a referral to a Neurologist too.

[Acompletesurprise in reply to Milkfairy]

I wish it were possible to have a review with an NHS cardiologist. I am due one but when I rang to obtain an appointment date I was informed that I on the list for an urgent review but that they would not be contacting me to make an appointment for a further 16 weeks as they have a backlog of those needing urgent reviews. Predicted time for appointment is 55 weeks!

I will see what GP says tomorrow - he is both helpful and prompt in his help! A neurologist might be an idea - do you by chance know if there any test that can be done to determine if it is a vasomotor disorder?

[Milkfairy Heart Star in reply to Acompletesurprise]

That is a very long wait! Are you able to ask for a cancellation?

There is a test available to detect coronary vasospasms.

Both my Cardiologist and Neurologist suggested that research has shown that you can experience vasospasms in other blood vessels in your body.

academic.oup.com/eurheartj/...

[Acompletesurprise in reply to Milkfairy]

Thanks for the link. Coronary artery spasm has been confirmed via angiogram (spasm happened during angiogram!) but this does not prove link to facial symptoms. Is there any test for these that you know of?

[Milkfairy Heart Star in reply to Acompletesurprise]

I don't think there are any similar tests offered in our situation.

My Neurologist sent me for MRI of my brain.

Then from my description of my symptoms, taking into account my diagnosis of vasospastic and Raynauds Phenomenon said he thought my neurological symptoms were possibly due to cerebral vasospasms.

There does seem to be a link between having vasospastic angina, migraines and Raynauds Phenomenon.

I hope your appointment goes well tomorrow with your GP.

[Acompletesurprise in reply to Milkfairy]

A really good session with my GP today. Has increased the Losartan Potassium dosage and introduced Amytriptyline. His theory is that the Isosorbide Mononitrate has successfully opened up the arteries and thereby stopped the spasms BUT the opened up arteries may have caused a pinched nerve causing the facial numbness! So he has ordered an MRI and, preferably, an MRAI followed up by a neurologist. And indicated that I shouldn't worry about the waiting time for the follow up from the cardiologist as he can manage the tests here so I shouldn't book another appointment with the cardiologist privately.

[Milkfairy Heart Star]

Hello,Good to hear you have had a good session with your GP.

Did the GP explain why they have prescribed Amytriptyline?

It is an antidepressant which is used off licence to treat chronic pain.

Vasospastic angina is an unusual heart condition which usually requires the input from a Cardiologist.

In 11 years, I have always seen a Cardiologist two or three times a year.

When I am in hospital, I am referred to as my Professor's patient with a rare and complex heart condition.

[Acompletesurprise]

He did explain why he prescribed amitriptyline - a very low dose - a much lower dose than normally given for depression! I did query it when he explained that it was normally prescribed for depression but his explanation was that a low dose it might just do the trick of calming down the nerves! He also put forward the suggestion that cardiologists were normally only interested in that part of arteries which directly affected the heart but that I probably needed the input of what was traditionally referred to as general physician. He was going to write to a specific neurologist who he felt could help.

[Milkfairy Heart Star in reply to Acompletesurprise]

I suggest you discuss with a Pharmacist taking Amytriptyline when you have a heart condition and the side effects. nhs.uk/medicines/amitriptyl...

I do question when doctors want to calm our nerves!

As always keep a diary of your symptoms and how you respond to your medication.

[Acompletesurprise]

Maybe I am badly describing what he said ..... I have looked online since your last message and can see that it is commonly used to treat neuropathic pain and have also found reference to it being used for trapped nerves. He feels that the numbness may be caused by a trapped nerve which has been trapped because the arteries have expanded - it seemed to make sense to me at the time. As it is impossible to see a cardiologist on the NHS and the cardiologist I saw indicated that I might need to see a neurologist and I don't have endless funds to see consultants privately I am in the GP's hands. His comment to calming the nerves referred to the physical trapped nerve rather than anything else.

[Milkfairy Heart Star in reply to Acompletesurprise]

Hopefully you can see a Neurologist to clarify what's causing your symptoms.

I also had an MRI of my cervical and thoracic spine and tests to exclude carpal tunnel syndrome.

The problem we face as patients is that coronary vasospasms are so poorly understood and that you can have vasospasms in other blood vessels in your body.

It's a sad reflection of the pressures the NHS is under at present that you have to wait so long to see a Cardiologist.

[Acompletesurprise]

Thank you so much for finding the time to chat to me. I didn't take the Amytriptyline last night in the end - they are there if I decide to take them I guess! They are there if doubling the dose of Losartan doesn't do anything. I suspect that the Ramipril were helping to keep the facial symptoms at bay but I couldn't handle that endless cough any more!

I agree with you with regard to the MRI or MRAI as the GP indicated and that this was necessary before I saw the neurologist. Just hope that all the strikes at the moment aren't going to make that a distant reality too!

And, yes, no one seems to understand these vaspospasms but there does seem to be more information about them available online.

[Aresares in reply to Acompletesurprise]

I took isosorbide and I have an extrange feeling in my head and ear. I don't know why. Are you better now?

[Acompletesurprise in reply to Aresares]

Sadly no! A cardiologist I saw in August was not convinced by the connection between the facial symptoms and the coronary artery spasms. However, he suggested that I try taking the spray to see if that alleviated the facial numbness. It did - for a limited time! So he suggested I increase the isosorbide and stopped taking the losartan.

But the numbness around the mouth and nose continues - not permanently, but it gets worse when stressed or, as I recently discovered, when I become very excited / animated! And, when it gets really bad the numbness extends to my left ear, shoulder and upper arm.

I have an appointment with a neurologist later this month and hope this provides a route to some more answers.

I remain convinced they are all linked and I just need the correct medication to manage where I now am.

Its still very difficult - at the beginning of the year before this happened I was on zero medication and completely fit.

I still struggle to understand how this started from nowhere and won't go away!

Sorry to not be of much help