Headaches post-stroke

Hi, I’m hoping someone may be able to advise me. I had a stroke in May 2020 & have suffered with unbearable headache episodes roughly three times per month ever since. Each episode lasts up to a week, so I am in pain more often than I’m not. I’ve tried all of the pain medications available to me , prescribed by my neurologist, but thus far nothing has worked. I am told that the next option for me is to be tried on Botox injections - but due to resourcing problems, this won’t happen for at least a year.

I’ve been in pain for so long now and have nothing to alleviate it. I’m close to losing my job and it’s ruining my life. It’s frustrating knowing there is a potential way of fixing the pain, but there’s such a long wait to have it.

I am having Accupuncture which I think may be helping slightly , but not enough to stop the pain from debilitating me.

I am tempted to try it privately but imagine the cost will be a lot.

I’m wondering if anyone else is in the same position? If they have tried Botox ? Or gone down a private route?

Any advice would be most appreciated.

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Hello, Yesterday I had an excruciating headache, which lasted all day. Had a sub arachnoid haemorrhage at the end of April 2021 (6 months ago). My neurologist warned me about headaches and I have often woken up with a mild headache. However yesterday was off the scale. Paracetamol hardly touched it. In the end a good night’s sleep seems to have sorted it.
I have now read up a bit and realise that it was possibly related to fatigue.

I am going to monitor this but am interested to see how others have fared. Just hope that its not going to be a recurring thing. It really made the day unbearable.

I’ll be interested to see how you get on,

I’m sorry to hear you have been in pain. It can be truly terrible. I will keep you posted if I find anything else that helps.

I had a mild ischaemic stroke almost three weeks ago which has left me with a daily headache which worsens over the course of the day, it will wake me in the night with a banging head with some nausea - paracetamol seems to help. I saw my GP yesterday and he seems to think this is normal after a stroke. I think fatigue plays a part as I slept for thirteen hours last night apart from waking up to take paracetamol, today the headache is just hovering in the background. my question is is it normal? and how long before they go?

Hello @alf1, welcome to the forum. Three weeks is very fresh from a stroke, there’s a long journey to go. I am a year now post-stroke, and still tackling each day. Stroke is not discriminating or discerning, and everyone’s stroke is different in some way. As far as how long symptoms remain, I have to say, how long is a piece of string? I know stroke survivors still with symptoms after ten years, others who recovered fairly well after one year. I never got headaches before my stroke, I now have very mild ones, but know of other stroke survivors who have had them quite severely, and seem to be ongoing. I get nausea on and off, today, I had nausea all day. Sometimes, it goes, but for me nausea is caused by ‘motion sickness’, that’s to do with the vestibular system not calibrated properly with the brain. So, even in the dark, my body and brain can’t quite get it together, and so the gut gets queasy (and there are neurones in the gut as well that need to talk to the brain - so it is all connected). Fatigue is a whole different story because fatigue is a bit of mystery for neurologists, but ongoing fatigue from what I have experienced from other stroke survivors and myself, hangs around for quite some time. These things do improve, but it doesn’t happen overnight. Hope you find the forum useful, and hope that we can be supportive for you during this time.

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I’m sorry you’re having such a tough time.
My stroke was 5 1/2 months ago and headaches have decreased in strength and frequency, thankfully, though nag at me in the background.

There is a lot of clinical evidence to show that some vitamin deficiencies can add to the risk of having a headache - I was researching this as I had frequent aura migraines. My stroke arrived at the same time as an aura migraine, and I had 7 subsequent migraines in the two months after my stroke (which was in the occipital lobe). I came across quite a few studies/clinical trials on the use of Magnesium in headache scenarios. And although I eat a disgustingly healthy diet, where I track the various nutrients, I could see I was well below the suggested healthy level.

I started taking 350mg of Magnesium Oxide per day. I haven’t (yet :roll_eyes:) had a migraine since doing so. The neurologist I saw when diagnosed was not interested in nutrition and unwilling to discuss non pharmaceutical interventions. A pity. Hopefully your doctor is more open to discussion. I will put a link to one of the papers on the U.K. national institute of health website which goes into the clinical evidence. GoogleScholar is a good source of approved, peer reviewed, published medical information if you’re interested in looking further.

There are other vitamin deficiencies which are linked to headaches, and which might be helpful in your case. Self dosing is hit and miss, and taking too much of something can also be detrimental. But having the right vitamins and minerals is essential to cell repair and health, so I hope your doc can help you with this.
Progress seems so slow after stroke, but you will get to a better life. Hang in there!
All the best.

https://www.ncbi.nim.nih.gov/books/NBK507271/

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This is very helpful, thank you so much. I do have a herbalist who has helped me with complimentary medication (alongside my pharmaceutical drugs) for inflammatory bowel disease - and the results have been fantastic. I definitely think supplements and herbs used in the right way can make a huge difference as the pharmaceuticals (in my experience) only takes you so far. I haven’t tried magnesium as of yet but I will give it a go! I’m open to anything to get my life back! Thank you for taking the time to comment, I really appreciate it. I do hope you’re okay too. Having a stroke really is life changing, but we will all get there!

I hope it will help. I found magnesium citrate too much of a laxative, and the studies seemed to point to Magnesium Oxide targeting the problem better. My daughter is a reflexologist and that’s very helpful for me, especially with emotions and mood. Plus the soothing feeling of the feet being massaged/worked is calming and so nice!
On the other thing you mentioned, IBS. I finally got that pretty well under control by using the FODMAP system to find the categories of food that one’s system can’t cope with. Have you had a look at that? You might not have the energy to deal with it at the minute, but might be helpful at some point.

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Interestingly I’ve just started reflexology! It’s so relaxing! …

Unfortunately I don’t have IBS, I have IBD (similar name) but mine is an autoimmune disease (Most people know them as Crohns Disease/ Ulcerative colitis). I’ve been really lucky as it initially almost killed me (before I was diagnosed) but the drugs to control it are really potent (they’re actually chemotherapy based drugs). But, even though I’m on loads of drugs for it, they didn’t get me into remission on their own (that’s where the supplements & herbs came in to complement). Thankfully my IBD is currently in remission - so it’s just these post-stroke headaches I need to get under control now! I’m very eager as I was 29 when I had the near miss with IBD / was diagnosed … then had my stroke a month later - so feels like a lot has been on hold since (as I’m sure you can appreciate). It takes over a lot!

It’s so good to hear you have been finding things to help. I’ll definitely continue with the reflexology.

I’ve also just recently started Accupuncture. Have you tried that? I do think it’s making a difference!

Hi Ashley,
I had my hemorragic stroke just over 3 years ago on the 26th October 2018 and I’m still getting headaches. Some times it’s just part of a day others last 2-3 days and really floors you, my doctor told me that I was very very lucky not to have any major physical side effects with the size of bleed I had and that the headaches is something that I could be left with time to time. I still have bad bursts of fatigue from the stroke and if I drain the tanks too much that would trigger one of mine off so for me I manage mine the best I can by reading the signs my body is giving me and slow down a bit and take it easy for a while. I was also referred to a muscularskletal physiotherapist that specialises in headache management and he gave me lots of great tips and advice to not let them get to overpowering.
I hope that helps at all as I only know too well how bad they can get and when they hit and how much they floor and wear you down over time :exploding_head:

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Dear Ashley_Heron
Sorry to learn of the headaches but welcome to the forum.

Can I just add a finger of fudge to the headache issue.
I used to get plenty of modest headaches and a lifetime of migraine. Then stroke got me six years ago. Headaches reduced to next to nothing and migraines became a rarity.
The migraine issues ceased as a result of me taking a blood thinner, Clopidogrel, and I am pretty certain that was the remedy because on two ocassions I had to stop taking Clopidogrel and the migraines returned.

I had an average stroke and the clot was in right lacunar. My recovery was steady and not bad at all.
Hope yu find the appropriate resolution for your headaches
Colin

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This is so helpful, thank you so much. I definitely find if I have “over done it” then the head ache will be worse! … and like you, I’m told I should be much worse off (in fact, my neurologist said I shouldn’t be alive) so I try and focus on that when I get frustrated with the pain. I will definitely enquire about that type of specialist, as the pain does seem to begin in my neck and initially feel muscular… but my neurologist thinks the reason the pain is so substantial when it occurs is because of the hemosiderin deposition left at the sight of the previous bleed. Do you ever find the headaches are sometimes worse than the pain of the actually haemorrhage? As, although the haemorrhage was terrible (for me it was like a sharp instant bang when I coughed and then a few days later the actual stroke occurred)… but sometimes the headaches I suffer now are more painful than that was.
Thank you again for sharing your advice and I hope things continue to improve for you.

Hi Colin, thank you so much for commenting and thank you for the welcome :slight_smile: I am on warfarin, but I don’t think it helps (although I sometimes wonder if the pain is worse when my INR is low) … I didn’t have migraines (or any headaches) prior to my stroke. So it’s quite new for me to be suffering with them. I am going to buy my own INR machine, to monitor it more often, as possibly keeping my range between 2-3 could help! Thank you for the advice! And I hope you continue to feel well!

Hi Trev @Trev0011, welcome to the forum. Sorry to hear you’re still getting headaches but pleased to hear the musculoskeletal physiotherapist gave you tips on how to manage them better.

I haven’t had a headache since my stroke with the exception of the day after my covid booster jab, when I had a dull headache that day, interestingly though I did suffer from occasional migraines pre stroke so I can sympathise with how debilitating severe headaches can be.

Hi Colin, I agree, I was getting really bad headaches since I started on the clopidogrel my headaches have lessened I also had a low haemoglobin problem for which my GP advised me to buy and take a multivitamin with iron as the iron tablets they prescribe have side effects. this also seems to have helped.
Alf1

Hi. I had a stroke in July 2021. In the run up I suffered with headaches and lots of migrains with aura. Since the stroke I’ve had no visual disturbances or migraine. I’m on Clopidogrel and this must help, but I’ve recently been told that I have a a PFO (hole in the heart) and this was the likely cause of my stroke. Having researched PFO the main symptoms are dizzyness, headaches, migraine with aura and breathlessness - all of which I’ve had since my teenage years. I was thinking that anyone who doesn’t know what the cause of their stroke was and who has/is experiencing headaches could maybe ask their doctor to check for PFO. I had a painless echocardiogram with bubble test to confirm I had a PFO. The results were then referred to a cardiologist who has confirmed closure is the best course of action. Having a diagnosis has really helped my mental health, as I’m sure I’m not alone in worrying about having another stroke.
It’s been challenging post stroke, especially as I assumed the fatigue would soon reduce (it still hasn’t!). I’m lucky that my work have been supportive and I’ve just started a shallow rehab.
I’m new to this (brilliant) forum, so I hope I’ve added this message in the right place?! I’ve not posted before, but reading about other people’s experiences has really helped me and it has ensured that I haven’t felt so alone, especially as I’m considered ‘young’ for having a stroke. Thank you to everyone who had posted on this forum and thanks for reading my story.

Hi Lisa @LisaQB , welcome to the community, sorry to hear about you having a stroke, hopefully your rehabilitation is going well.

Hi. Thank you. I’m getting there and I am actually thankful as things could have been a lot worse. Just one more obstacle now (PFO closure).
This forum and the sense of community has been a real help.
Thanks again.

Hi Colin the same has happened to me taking the same medication has stopped my migraines. I’ve suffered with them every 2 to 3 weeks for 45 years with aura sight loss and nausea, then after my stroke in March cerebellar lacuna infract and medication they stopped. I do have a sometimes a hungover feeling (without consuming alcohol) but I try to top up my water. I think the thinners has made mine disappear thank goodness.

Hello all,
Rereading these posts about headaches and migraines. My aural migraine was accompanied by an occipital stroke last June. I’ve regained energy and the stroke fatigue only comes now and then, though daily headaches of mostly light to moderate degree have remained. But after 7 or 8 months of no migraine I suddenly had a quite strong one with vivid, busy aural lights and patterns . I checked myself to make sure there were no stroke symptoms as in June, but seemed to be just a migraine. 5 days on and I feel like my stroke recovery has been pushed back…my head feels heavy, annoyed, headaches persist, my balance is less assured, less energy, mild nausea . It’s a bit of a blow……I can only assume that a brain struggling to recover and an aural migraine don’t make good bed fellows. Anyone else with this sort of experience?