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Does anyone else out there suffer with migraines? Since my bleed 5months ago today, I've occasionally had horrendous headaches that last 3 days and do not respond to the usual paracetamol/codeine (both of which I very rarely take at all now). My GP and neurologist both think these are migraines as they always occur in the same location and only ever on one side of my head (the left). I also generally feel a bit "yuck" with them (sort of nauseous but it doesn't stop me eating and I'm never actually sick) and prefer to lie down somewhere in the dark. My neurologist isn't sure if they're directly related to my bleed or not - apparantly they're common anyway in females of my age but equally he has had patients who seem to develop them after a bleed (mine always start at the back of my head where my haemorrhage was).

I was recently started in Paramax and for 6weeks or so this was great. I would start to get that migraine feeling, quickly take 2 of the tablets and thankfully the headache would ease before it developed into a full blown 3 day headache. However, Saturday am I woke up with the symptoms, took the Paramax and it didn't work. All weekend I had a horrendous headache and felt unwell and I still had the headache this morning, although it is finally now starting to ease. As we were away over the weekend (visiting our wedding location and doing the food tasting), I wasn't able to rest either which didn't help.

I was just wondering if anyone else out there now suffers migraine and what you have found works for you? I'm booked in to see my GP at the end of this month, but I know she (and my neurologist) are reluctant to put me on triptans as I believe (like NSAIDs which I am also not allowed) they thin the blood. Given we don't have a 100% cause of my haemorrhage (it was thought to be a cavernous angioma), they don't want to give me any drugs that will make my blood any thinner. I've done some Googling, but I'm fairly sure that my migraines aren't related to food (I can't ever find a common factor) and the only thing I can think of is that they do seem to come after I've had a busy few days.

I'd appreciate hearing from any other migraine suffers - have you found a cause for yours and have you found something that works to take the pain away?

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I suffered migraines from puberty. I found heat and cold or stress set me off. I got one having a cold plunge after a sauna and at school used to have them every week at the time of our French aural test. Food def did not figure in mine at all. When my anni inflated I had a migraine in the hospital and at the worst I had 5 mild ones in a single day. Luckily for me they have stopped since I was clipped and although the neuros say the two aren't linked I think that the migraines were caused by the weakness in the blood vessel where the anni formed later.

I tried migraleve which worked ok for me but didn't stave off the headache completely. The only real cure was to lie in a dark room for a few hours. Mind you mine didn't last as long as yours so I would definitely explore any options the dr s can offer you.

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Hi,

I developed migraines in my early teens and then went on to have the classic type with an aura after the birth of my 2nd child. For me personally, I find that coca cola can set them off, but not always. Stress seems to be a big factor for me and then I can have one.

I was put on a beta blocker called Propranolol after the SAH to limit the amount that I have and I can go for months now without having one .... it seems to work for me, but isn't the cure all....it also helps a little with anxiety. I'm only on a low dose, just one a day ... I was changed from the normal Propranolol tablet, to a slow release one and I found it hideous ... don't know why, but had side effects from it, even though it was the same brand.

There's a little bit of info on the following link ... might be worth talking to your GP about it. http://www.patient.co.uk/medicine/propranolol

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Thanks everyone, I already keep a diary of my life (I'm the sort of person that maps out their every move in a day in advance, so I can always look back at my calendar and see what I was doing before the migraine started) and other than the fact they seem to occur when I'm trying to do more, I can't see a specific cause. None of the usual food/drinks are the cause; I also don't think it's related to hot/cold (e.g., I never get them after going in the sauna at the gym!).

I will definitely speak to my GP about migraleve as that doesn't appear to be an NSAID, but over the weekend when I took Paramax with codeine, which I presume is a similar effect to migraleve, it didn't make any difference. I'll ask my GP about propranolol but I wonder if that is a drug they will want to avoid (I have never had high blood pressure, in fact even during my haemorrhage it remained normal).

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I've never had high blood pressure either and my BP is pretty perfect and always has been, but Propranolol can be used for the prevention of migraines .... as with all things "head wise" they're not quite sure how it works ... it's a preventative rather than a pain killer.

Codeine, can cause rebound headaches as a side effect, as some of us have learnt ... even with a full on migraine, I still only take Paracetamol. It's very hard to know what to do for the best .... bless you, it's kind of experimental and what will suit one person, won't always suit another. So very difficult.

Hope that you find some release from the pain. xx

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Hi I still get headaches and dizziness and sometimes the pain is really bad but they prescribed 10mg of amitriptyline and it does work a bit. Hope your pain goes soon. Jess.xxx

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Karen, I'll speak to the GP about propranolol. Iw as just worried as it lowers the BP it might have a blood thinning property, which is something my neurologist is keen to avoid.

Jess, I've already been on 10mg of amitriptyline since December to help with my sleep (initially 20mg), but I've been weaning myself off it as I don't like how tired it leaves me in the morning if I try and wake up early (but after 8 hours sleep). I'm starting a phased return to work and am trying to increase my hours slowly so have been trying to come off the amitriptyline (was down to taking it every other day). I did however start taking amitriptyline again on Sat and Sunday night to help with sleep and the pain.

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Chloe,

My daughter has not had a bleed, but she gets migraines and she takes migraleive (however it's spelt).

It seems to work instantly and she does get them bad.

Horrid things they are, do you panic when you feel it coming on? as my Sa does.

Good Luck on migraines xx and easy to say but try not to panic xx they are not nice but as Doc said to my

daughter, "relax look you can breathe (She gets panicky) panic makes it worse".

My daughter skipped out of Docs all happy, as she knew it wasn't going to kill her.

The shortage of breathe etc. etc. all the symptoms that come with migraines numbness, dots in eyes.

Be Well Chloe

Love

Win

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  • 3 weeks later...

Hi all

Just wanted to post an update. So I've had a few migraines the last couple of weeks and I still can't find a common cause (other than maybe doing too much!) so I spoke to the GP on Wednesday (a different one as my usual GP wasn't available). He suggested I be put on a preventative migraine medication to see if that makes any difference. He then checked the letter they'd received from my neurologist and this was also what the neurologist recommended if I didn't have much success with Paramax. Both the GP and neurologist thought that we should try me on Atenolol, which is a beta blocker (like what you suggested Karen). He's hoping that it will reduce the chance of the migraines occurring in the first place, but we have to be a bit careful as I'm also slightly asthmatic and beta blockers can set asthma off. However, we're hoping on a low dose we'll be safe and I'm to continue taking Paramax if I do still get any migraines.

So I've just picked up my Atenolol prescription and taken my first tablet. The pharmacist assumed I was taken them for panic attacks, but when I told her my history she was rather shocked - not sure she's seen a 27yr old female who's had a brain haemorrhage before! Anyways, she's warned me that the medication will slow my heart and I might end up feeling very tired, so she's going to ring me in 1-2weeks to find out how I'm getting on with the medication. Fingers crossed!

Win - I'm sorry I never replied to your post, I mustn't have seen it. I think Migraleve is basically the equivalent of Paramax + Codeine which I've tried but sadly it doesn't always work for me. I'm so pleased they help your daughter though as migraines are so horrible! I never really suffered with headaches until my brain bleed and I don't think I ever fully appreciated how ill my friend's must have felt when they said they had a migraine! I try really hard to stay relaxed and not panic (I'm not too worried about the bleed happening again as all my scans have come back clear now :)) but it's definitely easier said than done!

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Hope that it works for you Chloe. Always swings and roundabouts with most medication. I managed to eventually half the dose and it seems to mainly keep the migraines at bay albeit it having the odd one, so am quite happy with it. Should also help a little with any anxiety that you're experiencing.

Good luck and let us know how you get on. xx

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Hi Chloe

I don't post very often but just saw your thread , as I do read on here most days as find it very supportive, I had a subnarachnoid hemorrhage exactly a year ago , like you I still suffer very bad migraines , always one side of my head and get very scared when these happen , thinking the worst might happen again , I too now have been put on a betablocker propanol which has lessened the head aches a lot , but I still get 3-4 a month

I think it's probably normal to panic when they happen after what we have been through but thought it might be good for you to know that you are not alone, it seams we can still get them after ,I am 38 and had been going to the doctors for years with headaches before my bleed

I hope your new medication helps and things settle down for you too very soon

Take care

Kayleigh x

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Hi Chloe,

Just thought I'd add my two pennies worth to this thread - my bleed was in November 2008 and immediately afterwards I started with what I found out later to be the aura of migraine. Fortunately, I never have headaches with these migraines, but because I'd never had the aura before the bleed and I was getting it quite often it was suggested by a neurologist that I start taking atenolol (25mg daily). I started taking these tablets in Feb 2011 and continue to this day.

For most of the past 5+ years since my bleed, I have recorded the episodes of the migraine aura in the form of a diary. I know, since taking the atenolol that these episodes have reduced significantly and out of interest I've just had a look at my diary to see by how much. I have recorded having 26 episodes in a 6 month period prior to taking the tablets, this reduced to 15 in a 6 month period after I had been taking the tablets for a while, but when I look at the last 6 months, up to today, I have only had 3 episodes of migraine aura during that time.

When I was first prescibed these tablets I was warned that it probably wouldn't eliminate it altogether, but I could perhaps hope for a 50% reduction. Based on my own figures above it appears that I didn't quite make the 50 % reduction during the first 6 month period mentioned, but more encouragingly I have had roughly an 89% reduction over the past 6 months.

Hopefully, you too will benefit from taking these tablets,

Sarah

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  • 3 weeks later...

I never had headaches prior to my SAH beyond your normal tension headache once in a blue moon. However, once I had my SAH I started suffering headaches constantly and it's been an ongoing battle since then. I rarely do not have a headache. Most of the time I have one that is about a level 4 with level 7 or even higher 2-3 days a week. I generally spend at least part of one day in bed due to the pain. Just to give some context, I run ultra marathons for fun and have a high pain tolerance so have never been one to take to the fainting couch at the first tingle of pain. So if I am heading to bed rather than outside to play, it's pretty darn bad pain.

I've tried almost every headache/migraine preventative on the block and so far none have been very effective. Propranolol lowered my HR too low and I could only stick to it about a week and a half. My HR wouldn't go up high enough when I was running and it was causing me to feel faint and sick, which the docotor warned me about. Since it didn't help the headaches anyhow I was given leave to go off of it. Topiramate seems to help slightly when paired with Gabapentin. I'm also on Amitryptiline (25mg) down from 100mg. Stupid man doctor put me on 100mg and I gained 11 pounds in 2 weeks. I am a personal trainer and weight loss coach, so that was super frustrating because nothing I did would take it off. When I changed to a female neurologist she said that she never puts her female clients on that high a dose because of that. It seems to impact us more than men, and the impact isn't worth it.

I would suggest that you work with neurologists over GPs. It is not likely that you have migraines. What is more likely is that your pain neurons in the area surrounding your brain have been damaged to the point that they are over-firing and it will take time for them to calm down. This is way beyond the scope of what a GP can do. I'd really suggest a headache specialist, particularly one tied to a University or teaching hospital of some type (I go to the University of Washington Headache Clinic and see a team of doctors). My GP tried to treat with pain medications and it wasn't until I was seeing the headache specialist that she explained that they would not only not work (they don't) but actually slow down healing and cause more pain in the long run. My regular neurologist tried only migraine treatments because that's what he treats. We don't tend to get migraines in adulthood unless there is a family history of migraines. If there is a family history and you have the genetic markers, but they aren't "turned on" (my neurologist explained to me), brain damage from an SAH can cause them to get turned no and you can become a migraineur. However, if you do not have the genetic markers, have no family history, and have never had migraines the likelihood that you will become a migraineur after an SAH is slim. You are more likely dealing with still healing brain and pain neuron damage.

I know Wade from here also deals with chronic daily headaches as well. He also had a full workup and got a similar diagnosis, if I recall correctly; over-excited pain neurons that simply need time to heal.

Incidentally, it isn't only pharmaceuticals that my doctors have prescribed. I am also taking supplements (magnesium, CoQ10, Feverfew, Alpha Lipoic Acid, B12, B2, and a few other things), have been prescribed daily sunshine or a sun lamp, and daily exercise both cardio (running was suggested as the best exercise, much to my pleasure as I am a runner) and weights.

The one thing I get different from you is that my headaches move around. They are not always in the same place. I also keep track of everything and have found mine are very responsive to changes in the weather; when the barometer moves up or down, my headache intensity moves higher. If it stabilizes and we have the same weather for awhile then the intensity drops off. The pain does not drop with dropping or rising of the barometer, unfortunately so it isn't "good weather makes me feel good" or "bad weather makes me feel bad" it's just changing weather makes me feel bad. I live in the Pacific Northwest in the US where the weather changes all the time, often more than once a day, so this is a real challenge for me. It can be barometer rising in the morning as the rain moves towards the mountains, then falling in the afternoon as another rain front comes in from the ocean. A thunderstorm coming will put me UNDER, not just in bed. Today is a good day with a light headache, but I'm awfully dizzy. However I think I will be able to run after work which is a big "yay!" So you might want to also track things like weather changes. Light and sound can bug me too, but they seem to bug me more in response to headache, not bring on headache. They can make a bad one worse, but not make a good day bad.

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Teecher, thanks for your response - it's given me lots to think about!

I've now been on the atenolol for almost a month and I have to admit the difference has been amazing! Whether that's purely a coincidence, I don't know but (touch wood) I haven't had a single migraine or a bad headache at all. Furthermore even my mild headaches have been virtually non-existent - I feel so much better despite being so much busier.

However, like you I enjoy exercise (though the distances I run are significantly shorter!!!). I've found even running to the gym (1k) to leave me feeling very worn out, whereas I could quite happily run 6k before. I haven't even tried going for a longer run as when I slow to a walk I do feel slightly light headed (I also have to be careful as being asthmatic the atenolol negates the work my inhaler does!). I have been managing to work out at the gym doing plenty of weights without feeling any different and I can still ride my horse fine, so if it turns out that I have to choose between headaches and running, then I'll definitely choose to end the headaches and forego the running!

I'm seeing my GP next week anyways so will chat to them about how I'm feeling on the atenolol (I was originally on one a day, but increased to two a day as recommended by my GP, but maybe I'll see if we could try one a day instead).

If I do start getting these 3day blinding headaches again, then I'll certainly see if I can get referred to a specialist headache clinic. However, at the moment I do really believe they are migraines - the blinding pain is always the exact same side of the head, the pain is always predictable (as soon as the pain starts at the base of my skull I know it's a migraine and soon the pain has spread to my left temple), it is persistent, I feel sick with them, bright lights make my head worse and cold/ice seem to make it better. I did have a few similar bad headaches in the months leading up to my bleed but at the time always put them down to something else (e.g., I'd not been drinking enough water, or I had done >6hours of driving and was just tired), but now that I look back they seem to be the same. Also, my understanding is that migraines do often develop in women in their 20s, so I do believe there is quite possibly a chance that they are completely unrelated to the bleed (I understand my cousin used to suffer a lot with them when she was younger too).

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