Help! Nitrate migraine : hi I started... - British Heart Fou...

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Help! Nitrate migraine

Pinky20J profile image
38 Replies

hi I started taking angina medication - slow release tablets - on Wednesday. I have had excruciating headaches every day since. I know this can happen to start with but how long should it take to disappear?

Please help - I’m on the verge of stopping taking them at this point.

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Pinky20J profile image
Pinky20J
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38 Replies
BeKind28- profile image
BeKind28-

Hello :-)

For me I would give it a week to see if it would improve and if not I would speak with my Doctor again but it has been 3 days if you started them Wednesday so still early to see if things will settle down even though I do feel for you as a migraine sufferer

Let us know how you get on :-) x

Pinky20J profile image
Pinky20J in reply to BeKind28-

thanks. I was told to expect a headache but these are on another level!

BeKind28- profile image
BeKind28- in reply to Pinky20J

Hello :-)

I know what migraines are like so if they are anything like that and this is the first time you are experiencing them it will feel like a shock but as I said I would give it a go but if they do become too much to deal with go back and let them know

I really do hope though that you manage to settle on them and let us know how you get on :-) x

Tos92 profile image
Tos92

Hi  Pinky20J

Headaches / migraines are a common side effect of nitrates. When I take my GTN spray, I get a throbbing headache. I take it on the odd occasion and I can see you have been prescribed to take your tablets regularly.

When taking nitrates, it can dilate the blood vessels in your brain, causing an unpleasant headache. Usually, I’m sitting down or lying down when I take my GTN spray to limit the risk of falling. The headache for me personally, does disappear after about 20-30 mins.

As BeKind has said, it will take some time to settle. Of course, if you feel it’s absolutely excruciating after the first week of taking it and no better, touch base with your GP again and see if they can review it.

All the best.

Tos

Pinky20J profile image
Pinky20J in reply to Tos92

thank you

Milkfairy profile image
MilkfairyHeart Star in reply to Pinky20J

Hello,

I have been taking isosorbide mononitrate for over 10 years. I also have migraines and have botox treatment for these.

In my experience the headache from migraines feels different to the dreaded 'nitrate head' .

It can take upto 2 weeks for the nitrate headache to get better.

Drinking plenty of water can help. When I am in hospital and on very high doses IV GTN, I drink loads of water and this helps prevent a serious headache.

I also suggest you check with a Pharmacist or GP to see which pain relief you can take.

Perhaps also discuss with your GP/ Cardiologist about the dosage and when you take the medication.

Slowly building up from the smallest dose possible can help along with taking the isosorbide mononitrate at a different time of day.

I take mine in the evening.

Pinky20J profile image
Pinky20J in reply to Milkfairy

that’s really helpful thanks. I’m only on 30mg in the morning so far! 🤣 I’ve been taking paracetamol and drinking water.

It’s a shame as the nitrates do get rid of chest discomfort, palpitations and breathlessness I’ve been having for the last few years.

It also recommends avoiding alcohol?

Milkfairy profile image
MilkfairyHeart Star in reply to Pinky20J

It does recommend avoiding drinking alcohol, probably because alcohol can also drop your blood pressure.

I personally can drink alcohol, without any problems, however that's me. I have been taking nitrates for years.

I also use nitrate patches.

Have you had any tests to determine why you are having your symptoms?

Pinky20J profile image
Pinky20J in reply to Milkfairy

yes had them all! All show no issues so cardiologist wants to try the nitrates route. If it resolves symptoms it points towards micro vascular angina and he would then arrange an angiogram to confirm.

Thanks for your help. Think I’ll give alcohol a miss for a bit!

Milkfairy profile image
MilkfairyHeart Star in reply to Pinky20J

I am sorry you have joined the club of living with angina/ ischaemia non obstructive coronary arteries, ANOCA/ INOCA

I live with vasospastic angina another rarer type of angina without blocked coronary arteries.

It's good to see your Cardiologist is aware of microvascular angina.

However, there are other medications that can help. Nitrates while very helpful if you have vasospastic angina don't always help people living with microvascular angina.

So if the nitrates don't help it doesn't necessarily mean you don't have microvascular angina..

The BHF has this information about microvascular angina.

bhf.org.uk/informationsuppo...

You may find this website helpful too. It was written by 4 patients with over 50 years combined experience of living with microvascular and vasospastic angina.

internationalheartspasmsall...

There are quite a few of us on the forum with microvascular or vasospastic angina who are able to help too.

Pinky20J profile image
Pinky20J in reply to Milkfairy

this is so helpful and reassuring thank you.

The articles are great and informative. I was thinking that I might just have to put up with symptoms and get on with it if the nitrates didn’t help.

I’m sorry you’ve been suffering for so long. ☹️

in reply to Pinky20J

Hi

I have microvascular Angina/and coronary artery spasms. Im on the long acting nitrates. I had the headaches and they had me on the verge of tears, like headaches I've never had. Seemed to feel like they were at the back of my head/made me feel sick. So I genuinely feel for you. They lasted two weeks.

However, they sorted my chest pain. Over a period a time my problems had got worse. I had got to the stage where I couldn't walk on the flat for 5 minutes before problems started. In fact there were a couple of times I didn't get as far as bedroom to toilet! There were a few trips by ambulance to A&E.

I did end up on calcium channel blockers as well. The nitrates seemed to cover the day. But I was also getting woken up during the night - early hours with problems.

The combination of nitrates and calcium channel blockers has controlled it all. I do have moments when I can tell that without the medication I'd be in trouble so to speak. Strangely enough I think fluctuating hormones exacerbate my problem. There seems to be a pattern in that respect.

But Im so glad I stuck with nitrates as I got my life back so to speak.

Good luck, I know how difficult that is.

Milkfairy profile image
MilkfairyHeart Star in reply to

Hello ,There are quite a few forum members with microvascular or vasospastic angina.

It's good to hear your microvascular and vasospastic angina has responded well to medication.

I am unfortunately one of those who don't.

My vasospastic angina was diagnosed about 10 years ago with an angiogram using acetylcholine.

My cardiac MRI showed I don't have microvascular dysfunction but I do have vasospasms in my small and large coronary arteries.

What sort of tests were you offered?

Have you seen the BHF website information?

bhf.org.uk/informationsuppo....

bhf.org.uk/informationsuppo...

There is some evidence that a woman's menstrual cycle can effect the frequency and severity of her coronary vasospasms.

ncbi.nlm.nih.gov/pmc/articl...

Some women find using an intrauterine system , an intrauterine coil releasing slow amounts of progesterone continously or taking the contraceptive pill can help.

Perhaps discuss this with your Cardiologist.

in reply to Milkfairy

Had all manner of tests. It was over a course of 18 months and took that long to diagnose due to pandemic related delays.

Had a cardio angiogram, myocardial profusion, echocardiogram. They also caught the spasm on ECG eventually. Slippery little things those, as they came and and went once I stopped still and sat down. So by the time any ambulance arrived and took me to hospital they'd subsided.

But they caught it as they asked me to walk to the x-ray on one of my A &E trips. I didn't make it. All the tests followed that trip.

Originally they had been referring me to Gastro because each time I went in an ambulance the ECG was clear. For 6 months it wasn't a great experience. I started questioning my sanity and genuinely thought I'd end up admitted after a HA, and actually thought I may have already had one due to tropinin levels recorded on one episode and at first they thought I had, pumped me up with all the treatment for one and kept me in until they were convinced I hadn't.

Milkfairy profile image
MilkfairyHeart Star in reply to

I had quite a journey to my diagnosis too.I was admitted to hospital about 11 years ago with a suspected heart attack but incorrectly told I could have angina or a heart attack because my coronary arteries are unblocked.

I have an admission plan now to help the staff look after me when I need admitting which is about once or twice a year.

Microvascular angina are related but distinct types of Ischaemia/ angina non obstructive coronary arteries INOCA/ANOCA.

There has been so much research and growing awareness of these types of angina in the last few years.

My Cardiologist and other keep saying that vasospastic angina is rare, microvascular dysfunction less so.

You might be interested in this website.

internationalheartspasmsall...

If you are on Facebook the BHF information about vasospastic angina gives a link to a support group.

francesw47 profile image
francesw47

Hi Pinky20J I also take Isosorbide Mononitrate (together with Ranolazine) for angina - which may be microvascular/vasospastic. I didn't get a headache initially, but I understand that this can be a problem with oral nitrates. I've taken Isosorbide for a couple of years now and found it effective - although the addition of Ranolazine really helped. Ranolazine is a different class of drug and the cardiologist says is a Marmite drug...for me the combination has been really helpful. i also get migraine - no headache again but nasty aura and I can tell from the 'feeling' in my head when one is coming on and know to stop for a while until it passes. Try and hang in there with headaches - I'm told they do gradually diminish - hopefully the benefit of taking oral nitrates will be worth it.

Frogman53 profile image
Frogman53

I also had a very bad headache when my GP put me on Nicorandol severall years ago and I stopped them , he then put me on Isosorbide Mononitrate and I have been OK with them . I'm also on Amlodopine, Ranolazine 500 morning, 750 night time and so far I have been fine.

Plum53 profile image
Plum53

Morning, my headaches lasted just under two weeks. They were really bad I took paracetamol which helped. Fine now.

Crystal614 profile image
Crystal614

Hi, I have MVA. I take long acting Isosorbide Mononitrate, a calcium channel blocker, Trimetazidine and I use Nitrate patches as well. Like so many others I suffered with dreadful headaches when I started taking the Mononitrate, they went on for weeks and like you I was only taking 30mg. I spoke with a pharmacist and he told me to stick with it and my body will get used to them. So I carried on taking them eventually the headaches subsided and I upped the dose to 60mg a day.

benjijen profile image
benjijen

I am on 60mg along with all the other usual meds. I can't remember how long I had the headache for, but I can say they reduced my dose to 30mg and I ended up back in hospital!! I'm back on 60mg now so wouldn't suggest coming off them in case the same happens to you. I was advised to try paracetamol to help when necessary.

Pinky20J profile image
Pinky20J

thank you all so much for your messages. I really appreciate them. I will stick with it for a couple of weeks but at least I know there are other options as well.

Callie456 profile image
Callie456

Hi, I am on a daily nitrate patch and also Ikorel tablets (nitrate). I use the GTN spray occasionally. I remember getting terrible headaches when I started and panadol didn't help much, I had a lot of nausea too. I know I wanted to give up on it all, I felt so bad!! So I understand how awful it can make you feel.

It took a few weeks (maybe 3-4), but the headaches and nausea eventually settled and then I stopped getting them altogether. It might depend on how quickly your body system adapts to the change. Looking back now I'm glad I stuck with it as now I hardly ever get angina, it was just a really hard time to get through, not knowing if or when the headaches would stop. My nitrate meds are now ones I actually like taking as they work well for me!

I only use the spray rarely and that does give me a headache, so I lie down if I use it, but the headache doesn't last long.

I'd say chat to your dr, but give it a go as long as you can and plan on spending a few weeks resting, that's what I did. If it helps the angina for you that's great, you just need to hang in there till your body gets used to it.

Best wishes 💖

Pinky20J profile image
Pinky20J in reply to Callie456

I’m sorry you had to go through weeks of this!

I need to work but at least it’s from home. So when I can I lie down but not for very long!

Callie456 profile image
Callie456 in reply to Pinky20J

Oh that's extra tough working at the same time! Thankfully I was on leave, but am also carer for my mum, which didn't take a holiday. Glad you're working from home, that's helpful. You could try an ice pak for the headaches or I used to find having the cool fan blowing on my face helped.Hopefully yours won't last that long, I see some others have said theirs only lasted 2 weeks, so fingers crossed for you. Hang in there, it'll be worth it in the end!

Pinky20J profile image
Pinky20J in reply to Callie456

great ideas will definitely try them, thanks!

I don't know about everyone else, but I beat myself up over the diagnosis. Questioned everything is done. Blamed myself. Maybe I pushed myself too hard running, maybe my diet, maybe too much fun in the past going out etc.

Took me a while to accept it all. Even though there is history in our family on the female side.

Milkfairy profile image
MilkfairyHeart Star in reply to

Life just throws us a curved ball 🤷‍♀️

Pinky20J profile image
Pinky20J in reply to Milkfairy

it so does. I’ve had diagnoses of acid reflux, asthma, long Covid, myocarditis and now possibly micro vascular angina. Still have symptoms but no actual concrete diagnosis. I feel like it’s all in my head sometimes!

Thank you all for your comments. It’s really helped me feel less alone in trying to navigate this xx

Jules2021 profile image
Jules2021

HiMine disappeared within two weeks. Jules x

Dj1962 profile image
Dj1962

Hi..I was put on 20mg, but like you found the headaches hard to tolerate, so I was changed to 10mg twice a day, which I've found to be a great improvement..Good luck..🙏

Ellie-Ann profile image
Ellie-Ann

Hi Pinky 👋

I was put into Tardisk XL ( Isosorbide mononitrate 60mg) some time back now for angina.

I was as sick as a parrot one day during the first week and my head was booming. I got in touch with the Dr who halved the dose for two weeks. Pretty well ok after that. All I can say is that it’s a horrible first 2-4weeks but honestly…I’ve not looked back since. It’s made such a difference to my upper back aching when I exercise and go for a walk. I don’t get the pain and discomfort anymore. I likened starting it to ‘a snow plough…clearing all the snow away” then afterwards….it’s all ok. Good luck. Stick it out if you can.

Pinky20J profile image
Pinky20J in reply to Ellie-Ann

wow! So glad it’s really helped you. I keep thinking ‘oh the symptoms aren’t that bad I don’t need the nitrates’ but hear stories like yours that give me faith!

Ellie-Ann profile image
Ellie-Ann

I’m glad I persevered Pinky. It wasn’t good to start with but I’m pleased I didn’t give in. I hate the nitrate sprays ( even though I carry one.). That stuff stings my mouth and gives me a headache. Haven’t used one since taking the nitrate tablets. 👍

Westie2012 profile image
Westie2012

Sorry I can’t give you any advice on your medication but I can empathise with the migraine part . I was given gtn spray in hospital once , the cardiac nurse said I might get a headache , talk about an understatement . I felt as if my head was going to explode , I’m just glad I was an inpatient at the time as I felt so unwell . I slept for 18 hours without hearing the breakfast and dinner come round . I remember the cardiologist coming to see me , I could barely lift my head up , he came back a few hours later . Hope your migraines soon go away and you get used to the tablets .

Pinky20J profile image
Pinky20J in reply to Westie2012

how awful for you. Yes I wasn’t expecting the forcefulness of the headache. I am going to try again so fingers crossed!

k9poppypoo profile image
k9poppypoo

HI i was put on these and had bad headaches told doc he said start with smaller dose and work up to larger dose it worked for me.

AuntyEdna profile image
AuntyEdna

Hi just to add to the posts this is my experience.

I have Cluster Headaches (10 yrs) and Migraines ( life). Mostly under control with meds and three monthly trips to my neurologist for nerve block injections. Cardiologist gave me Isosorbide Mononitrite, plus other meds, when I was diagnosed with Microvascular Angina (chemical induced stress test) Oh boy big mistake all my cluster and migraines pain came back with a vengeance. My Neurologist said he wasn’t surprised and because of the Cluster Headaches I probably wouldn’t get used to it no matter what the dosage. So I manage without. I use GTN spray which I can just about tolerate with various degrees of success. So I guess some of us will be ok and some may not. Take care all you migraneurs it’s a lonely place to be sometimes xx

Pinky20J profile image
Pinky20J

thank you all for your advice. I tried half a tablet today and used an ice pack and was better!! And I managed to walk up a hill without chest discomfort or breathlessness!!

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