Trying migraine preventers, getting all the side effects and no reduction in migraines!

I have had severe migraines for over 5 years now, gradually increasing in frequency and intensity. Untreated I would have at least one severe migraine a week where I'm in bed, blinded by pain and vomiting every 20 minutes for about 12 hours. I have been on Amitriptyline since April 2012 and have now almost completely weaned off. I found it didn't really reduce my migraines at all. I started on 10mg a day, it would help a bit for a couple of weeks then my body seemed to over-ride the effects and my migraines would get worse again, so my doctor gradually increased my dose 10mg at a time until I was on 50mg a day in November 2012. I then started to get heart palpitations, I took Stemetil during a particularly bad migraine, which I had been prescribed, but wasn't told it must not be taken with Amitriptyline as it can cause an irregular heart beat! I ended up having paramedics tend to me at the end of that day!! Thankfully, I wasn't taken into hospital, they said my heart rate was ok, but when I saw my doctor the next week, he said I should start to wean off the Amitriptyline as it was clearly affecting my heart! This is stated as a possible side-effect in the leaflet with the meds. I detest my migraines but nothing is worth having heart problems! I am now down to half a tablet (5mg) a day which I will take for another 4 days, then stop completely. If left untreated, my migraines are always accompanied by severe vomiting, usually for about 12 hours, every 20 mins, with hideous pain behind my right eye and behind my ear & neck. I usually wake the next day fine, but feeling like I've been run over! I've been having acupuncture to see if that might help. Interestingly, the physio who administers the acupuncture, says that I have tender points along my gall bladder line and she will press lightly on certain points of my body (in my neck, back of my knee, shoulder, side of my calf) and each time she finds a tender spot that I didn't even know was tender until she found it! I have had 6 acupuncture sessions, which have been during my weaning off Amitriptyline, and so far I have only had one "bad" migraine which I managed to stop with 300mg Sumatriptan (taken spaced out over a 24 hour period). I have tried Propranolol, but within a month I felt like a spaced out zombie and couldn't function, so came off it. I then tried Topiramate for a month, which was horrendous, the worst thing I have ever tried. It made me depressed, gave me eye problems, I completely went off food & lost a stone in a month (that was the only good side-effect as I then went on to lose 3 stone since coming off it as it proved to me that I wasn't just "stuck" being overweight)! I did try Soya Isoflavones for three months and they have been the only thing that have eradicated my migraines completely, but unfortunately only for that three months. Within a week of starting them, I felt like a completely new person, so energetic, awake, without any pain or fuzzyness of my head, it was incredible. They came from the health food shop in my town and the manager said that they can stop working, perhaps your body over-riding the effect I don't know, and sure enough they did. I was gutted. I've been off them a year now and wonder if I might get the same three month break from migraines if I try them again. Soya Isoflavones are recommended for menopausal women as they level out your hormones & provide your body with what it's lacking. I'm sure my migraines are hormone related as they've worsened considerably since I became 40, and I'm now 45. I've only just joined this site today and am very interested in other people's experiences. We all have migraines for different reasons I'm sure, and sometimes we may find something that helps us which other people have tried.

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  • I have recently joined the site too. I have been having migraines as well since I was 39 which is 6 years this year. I was going back and fore to my GP without much joy. I referred myself to a neurologist in may wo put me on Amytriptlene. Worked for about for about a few weeks, then stopped, so my GP upped the dose, which by the end was knocking me out completely, and the morning after taking it I would be so drowsy. Anyway it wasn't doing anything for my headaches, so saw my Neurologist again who on the 30th nov prescribed me Topiramate and told me to wean myself off Amytriptlene. I also had an MRI which was clear. Anyway, I was only ably to take 6 days worth of the tablets, I lost between the 17th dec and 23 rd dec 9lbs in weight through vomiting, and just unable to eat, feeling of depression and other horrible feelings. The after effects lasted well into the 1st week of jan, not a nice experience for me on Topiramate. Saw on this site information about the National Migraine Centre, so after another visit to my GP on the 7th jan where I had no luck with any advice, I came home and my husband booked an appointment with them for the 8th jan. We went to he NMC and the doctor I saw was very helpful. I do take a lot of headache relief and have been doing so during the past years, so I am currently being treated for Medication Overuse headaches. Trying to eliminate this cause first, then see what I am left with. I have been given Naproxen to take for 6 weeks and no painkillers like Solpadeine, paracetamol, neurofen, aspirin. Otherwise I will sabotage the treatment. So far I have been a week without any pain relief, just the Naproxen. It's hard but I am trying to stick with it just to get my headaches eliminated and my life back to some normality. I don't know if this post will help you, but I hope you do even if its just a little bit.. Xxx

  • Thanks for your reply. It does help to know that other people feel the same, not that you want others to suffer, but it stops you feeling so alone. When I'm vomiting for 12 hours, I honestly feel like I'm the only one to feel that bad and I must be dying! I had an MRI scan too, about 18 months ago now, and of course it was normal, as the doctor said I wouldn't have a brain tumour one day a week and be fine the other days! I knew that, but definitely wanted the scan anyway just to put my mind at rest. Topiramate is a terrible drug, I've heard of so many people who have these awful side-effects. I can't believe that it is given to children for epilepsy and also, I think, for bed-wetting!! My 13 year old daughter has seen a paediatric neurologist a couple of weeks ago as she always has headaches, but so far hasn't had what I would call a severe episode with vomiting. The neurologist said she has most likely got migraines and has prescribed Migraleve (oh I remember the days when that worked for me - it would be like taking smarties now!). I definitely don't want her to be put on a preventer, given the bad experiences I've had. I went down to half an Amitriptyline (so 5mg) last night and will stop completely early next week. I'm now trying a combination of "natural" remedies, which I found on the Migraine Trust website (I'll try to copy the link here, so hope it works... migrainetrust.org/assets/x/... I thought it was worth a go as it doesn't report any side effects at all, so it's just a case of it working or not, depending on why you get migraines in the first place. As I'm convinced mine are hormonal, I'm hoping it might help at least. It basically recommends high doses of Magnesium (600mg of Magnesium Dicitrate - I could only find Magnesium Citrate in 500mg tablets which I thought I'd try first), 400mg of Riboflavin (Vitamin B2), and 300mg of Co-Enzyme Q10. I'd already been taking these as supplements but not in the quantities they've recommended, so I've increased them & will see what happens. Keep me posted on your journey through this migraine nightmare. It's good to share experiences and just have someone to talk to who knows how awful it is. People who have never had a migraine have no idea how bad it is, I get quite upset when they think it's just a headache!

  • Hi. It sounds like you both started to have migraines with menopause.

    My migraines started 30 years ago, when I was about 10, maybe a little bit earlier. I am very sensitive to light, sound, heat and smells. Other people's perfume is a nightmare to manage day to day. For instance if I sit next to someone who wears a strong perfume on a plane I will have a bad migraine and spend the whole flight throwing up for instance, therefore going out or travelling is very stressful for me, so I avoid it. Over the years I tried all t sorts of treatments: tablets, acupuncture, healer, dietician, anything you can think of.... I also have a very strict life style of healthy eating, exercising, going to bed early, not drinking, not eating processed food etc ... Three years ago things became much worse and I was seen by specialists in hormones and migraines. Whatever I tried made things worse. I was put on the pill taken continuously, it made things worse, I stopped recently. Last May I started a detox as I am suffering from medication overuse, I have been taking triptans for 20 years. I did it with Naproxen for 6 weeks. At the end of the 6 weeks things hadn't changed and since then I am taking even more triptans than before the detox, about 20 days per month. The hormones specialist then sent me to the neurologist who gave me a nerve block. That was back about late September. It gave me the most awful migraines with cluster headaches in the middle of migraine attacks. I had to stop working, I couldn't even have my daughter at home with me, I scared her and I couldn't take care of her anyway. I asked for sumatriptan injections which I had had in the past. The first time it work but after that it didn't change anything. As I was going through this phase of awful migraines after the nerve block I was trying Indometacin but the side effect were becoming worse and worse. I really wanted to persevere because the neurologist believed it would work and as I was on sickness leave it was the right time to give it a go. It got so bad though that I had to stop as I couldn't keep my eyes open, couldn't walk to school. I started to feel a lot better when I stopped and then the nerve block wore off and the awful migraines stopped as well and I went back to work late december. The neurologist wasn't happy I stopped Indometacin and I am now trying the very last treatment I have ever tried, Pregabalin, but if it doesn't work I know there is no point I go back to the NMC as there is nothing left for me to try. The dose has to be built up slowly, I have just done the first two weeks on a low dose, no problem, but yeaterday I doubled the dose and already I am feeling tired, sick and dizzy. I was told that unlike Indometacin the side effects will wear off but how do I live in the meantime? I feel I am at the end of my journey though and I feel for people who have recently started to have migraines and trying to understand them. If I could go back in time (which I would, I want to die as soon as possible, not going through a lifetime of migraines again!) I would be more assertive faced with all the comments I got about my migraines over the years. I am now, I now sometimes people say things thinking they are trying to help but I have become to sensitive, I answer back in a very assertive manner.

  • Oh Sybille, that all sounds horrendous, you poor thing. How can so many people suffer like this, but there's nothing that can be done once & for all? I feel the doctors don't understand how debilitating it is. Your migraines sound far worse than mine. I took 3 sumatriptans on Thursday (over 24 hours) and the migraine went without it getting anywhere near the sickness or having to stay in bed phase. I get lots of shooting pains going up the side of my head, but not always while I'm actually having a migraine attack. I've been on Cerazette the birth control pill for 18 months now, to try to control my hormones. It has helped and I also don't have any periods as I take it continuously. I daren't stop taking it as I don't know what they would now be like if I did that. My doctor said he wouldn't advise the injections into the head as that's quite a serious step and he knows people who've been worse afterwards. At least with pills, you can get them out of your system quite quickly, I'd hate to have an injection and be stuck with it for a period of time. Some things that I've heard of but not tried myself are Botox (not sure about that, doesn't sound to me like it would work for hormonal migraines), cranial osteopathy and the Bowen Technique. It gets to the stage where you'd try anything as it's just so depressing and I'm all for trying the things that are non-invasive. The next preventer I'm meant to try is Sodium Valproate, but I'm not going on that for the foreseeable future, it's a drug licensed for epilepsy (like Topiramate and I didn't react well to that one!). Sometimes if I can feel a slight migraine start, I can take 3 x soluble Aspirin disolved into Coke (Coca Cola!) and that will help loads. Sometimes it gets rid of it completely, but more often it just holds the migraine off for a day or so. x

  • It's a conflicting thing isn't it -hearing everyones awful experiences make me so sad for people whilst finding comfort in knowing that other people have similar experiences. I can say ditto to all of the drugs above -except Amytrip as i already have a heart arrhythmia! Topiramate -horrendous. any beta blockers - zombie, I have taken Pregabalin but for neurological pain when i prolapsed a vertebral disc. I wasn't convinced of it doing anything -but watch out for the withdrawal effects. Do it slowly! I took Sodium valporate for 18/12 -actually with quite good results esp as i was under huge amounts of stress at the time and having to do loads of studying for a post grad. However the migraines did creep back again, it RUINED my hair - seriously -my hair turned to spiral wire and came vertically out of my scalp! The NMC when i visited towards the end of that 18/12 said they wouldn't recommend staying on SV for that long anyway (hospital neurologist with his tick list of drugs to try had prescribed it) weaned off that (again VERY slowly) and now back to triptan and paracetamol -overuse again! My migraines have got much worse with being perimenopausal but can't be treated hormonally due to unpredictability of periods. Like you all -I don't really know what to do for the best either. Like Sybille loads of day to day precipitants -smell, light, heat, cold, and feel frustrated each time i have to re-explain any of it to work when i need to open a door for ventilation or sit in a certain place. I'm just trying to keep going to retirement!!!

  • The last time I saw the hormones specialist she suggested I try Cerazette consitnuously but after what Yasmin did to me I decided not to give it a go. I forgot to say in my previous message, what is very difficult to manage day to day is that triptans knock me out so it is not as straight forward as taking one to get rid of my migriane and get on with the day. I can't take one if I am at work or need to drive. So often I have to wait until the evening. My GP is now looking into botox for me but first I am not sure I want to try, the risks of serious side efects are too high and secondly I don't think it is that effective, it comes with many problems, sides effects.

    I believe my migraines are hormonal but the neurologist says they aren't. He said to me "all women have migraines during their period". That was at the NMC. A few year ago I saw a neurologist at the hospital, it lasted for a while and one day he said: "well it's all in your head, go and see a psychiatrist", which I did.

    I find this forum is full of menopausal women with migraines who cannot get help. If men had to go through this I am sure it would be taken more seriously.

  • Oh my god, Sybille, I can't believe that neurologist said that, it's terrible!!! Maybe he thought he was being funny (ha ha) by saying it's all in your head?! Warped sense of humour in the circumstances, I'm sure he wouldn't think it was funny if he had migraines. I think as we approach the menopause, our bodies are going through loads of changes and the fluctuation in hormones trigger migraines. I've met several ladies recently who've said they had awful migraines from their late 30's until the menopause, and once they actually went through the menopause, their migraines disappeared - great if that happens, but I don't want to waste the next 5-10 years being ill and eventually being pleased that I'm older!! Before trying any medications and before going on Cerazette, I would always get a mega migraine a day or two before my period started and again at ovulation time. Since being on Cerazette, which is Progestogen only, I'm not ovulating or having periods so I think that helps to a certain extent, but I also think I'm having dips in oestrogen, which trigger migraines. I would definitely recommend Soya Isoflavones to all of you (mentioned in my first post above). I can honestly say I've never felt as well as when I was on them. For three months I had no migraines, I felt reborn of energy, lightness and just overall grateful to not be ill. You can get them from any health food shop, or probably Boots, Superdrug and big supermarkets. Unfortunately they only worked for 3 months, but I may try them again, but feel I should give the Magnesium, Vitamin B2 & Co-enzyme Q10 a go first. I've also heard that an oestrogen gel can help, which you rub into your bottom(!) a few days before your period (would be difficult to tell for me as I don't have them!). I hope any ideas we come up with between us might help someone. Keep in touch. x

  • Hi, I suffer with menstrual migraine with aura so cannot take pill with estrogen.do you know if Can I take the soya isoflavones as I would be interested in giving them a go! Thanks

  • I'm not sure, you should speak to someone in a good health food shop for advice, I don't think any doctor will be interested as they don't tend to believe in health food alternatives. I was told that Soya Isoflavones are a natural way of levelling out hormones. It's worth finding out. Good luck! x

  • I meant health food shop, ie natural supplements, rather than "health food"! x

  • I get the smell sensitivity too, thought I was just going mad. that "joop" perfume is particularly bad for triggering my migraine hah!

    My migraines started when I was 12-13 years old, so that's around 10 years of varying frequencies and severities.

    Pizotifen did nothing, amytrip did nothing but gave me horrible migraines when I was coming off it, propanolol did nothing besides give me cold feet and now I'm trying gabapentin so we'll see how that goes!

    nobody has referred me or been willing to help in any way besides drugs.

    boo =/

  • Thanks for your reply I will definitely look into this, even if I have to break from it every so often it's better than nothing! :)

  • Hi, ive just found an Interesting website you may be interested in tuliv.com which have herbal products for menstrual migraine and menopausal migraine. Has some good reviews. I may try this but works out at about £60 for six weeks supply, however does come with money back guarantee .

  • That sounds a huge amount. Any good health food shop will advise on herbal supplements for menstrual migraine - that's what the soya isoflavones were for & they were only about £8 for a months supply. A friend on mine on facebook has said she's started on HRT and her migraines have disappeared! I'm a bit scared about HRT but if it's that drastic, I'd try it!

  • Yes I think I,ll give the soy isoflavones a go first, Were yours from high street ie holland and Barrett. Good luck with the HRT :)

  • I got them from a really good independent health food shop in my town, but I have seen them in lots of places. I've just checked my cupboard to see if I still had the last bottle I used but it's gone. I've been off them a year now, so I may try them again before HRT. I'm only 45 (only! seems an old thing to say!) & it does seem a bit drastic to go on HRT at my age. My friend has been told she's peri-menipausal & her migraines only really started last October (we were in the same school year so exactly the same age), whereas I've had mine for at least 5 years. Not that I'm sure that matters, everyone ages differently. There used to be such scare stories around about HRT & I don't really take any notice of it now, so I don't know how safe it's considered to be. From my experience I would definitely recommend the soya isoflavones, but ask if the assistant thinks they're right for you in the shop, I just wish they had worked for longer, but it was a fantastic migraine-free three months! x

  • Thanks Linda I will give these a try while I sort out my next line of attack! I,m thinking of trying natural progesterone cream next. ... (I,m not menopausal tho I am 42 so no doubt that little gem is around the corner :() but I've read it can be used for menstrual migraine or peri menopause headaches. Have you tried this?

  • I've read all these posts with interest and really can sympathise.

    My migraines made a vile, ghastly return at menopause - hadn't had one for over 20 years - so in my case and as may be the case for others - it's the **decline** in estrogen that creates the migraine. Huge, painful neck knots are a feature of my migraine.

    Been through the mill with a hideous menopause and it still continues 7 years on, periods stopped at 44 but what I didn't realise when I was feeling so vile is that I was peri-meno from about 40 - the hormone shifts were taking place then.

    I attend a Menopause Clinic and a Neurologist at a London hospital - GP referrals as my treatment was 'beyond' what she could recommend. Awaiting a CT scan as I couldn't go through with the MRI due to claustrophobia.

    I'm on HRT (bio-identicals - patches and separate progesterone) and it has helped the migraines to a point - however, in my case, another problem is that I'm severely progesterone intolerant - progesterone is the element of HRT that you have to take along with estrogen to protect from endomentrial hyperplasia, ie. build up of womb lining. When I take the progesterone, I get a predictable hideous migraine on day 6.

    Haven't yet found a mig treatment that works - I'm highly medication sensitive - I take half of 50 Imigran and it knocks me out.

    I'm not working right now and there's no way I could hold down a job with menopause symptoms plus migraine.

    Propanol, Naproxen and others made me feel v.ill with side effects - so I'd not only be getting over the migraine but side effects too. Tried herbs, Feverfew, etc, nothing works. Recently I ordered some Zomig nasal spray - have yet to try that.

    Menopause is often the culprit of vile migraines and for many women it doesn't get better after menopause. Estrogen deficiency doesn't 'get better' - it just marches on and on.

    For those at menopause, a low dose estrogen patch and vaginal progesterone (Utrogestan) every 6 weeks may be worth considering to help ease the migraine.

  • I've just seen this thread - I was told by a GP that migraine with aura means increased risk of stroke, therefore she would not prescribe any HRT as that would further increase the risk, even though my migraines were probably caused by menopause. Does anyone have any information or experience about his? A (male) neurologist on the other hand told me he did not know anything about hormones, there was no stroke risk: just take triptans.

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