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Fibromyalgia Action UK
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Does anyone else get really bad migraines?

Hello everyone, I suffer with severe migraines and I'm currently dealing with one that hasnt gone away for 2-3 weeks! No medication works and I'm looking for any advice from others that go through this horrid pain as well x

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Hi notofibro I have terrible migraines just like you, my Neurologist has me on sumatryptan and they work really well, I used to be on Migraleve but they took ages to get into my system, my advice to you is stay off your computer devices, dim down your lights if you can and if not try to get into a dark room, if you have a family then tell them you need lots of peace and quiet drink plenty of fluids and rest up until the migraine goes away, then get an appointment to see your doctor and discuss what's the best medication to get rid of them or at least make them less severe.

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My doctor refuses to send me to a Neurologist and put me on imigran amd pizotofen and both havent helped at all, also tried migraleve, ibuprofen, hedex and paracetemol but nothing has helped! Thank you for your advice! x

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Hi If your doctor has refused to send you to a neurologist then you should ask him/her the question why ? because your doctor cannot see inside your head unless of course he/she has xray vision which is very doubtful, you should say that you are having really severe migraines and you need to be reassured that there is nothing else going on inside your head

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This article may help in dealing with a reasonable request for referral:

fibroaction.healthunlocked....

I used to get intractable migraines (ones that don't respond properly to medication) and mine were due to myofascial tension. After treatment from a MFR therapist I was able to come off Pizotifen. Is it possible you have myofascial pain syndrome? It's very common in people with Fibro.

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Hello, thank you for your information, think it will be something that I bring up with my doctor very soon!

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Hi Lindsey,

That's a very good point. What sort of symptoms did you get with that? Is bruxism part of it? MFT isn't an area I've looked properly at.

A xXx

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I used to have migraines like yours, but when i was given antidepressants over 7 yrs ago, havent had one since and I can even eat chocolate now! Only good thing to come out of being bipolar, I think others have had same experience and its only a minimal amount of meds used not as much as me xx

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Hi i get whats called cluster headaches. but i hd what i thought was one of thse 6 wks ago and nothing touched it out if the sumitriptine or amytrip etc. have inly just gone bk to wrk on half days. been so ill. dr reckons i hd some sort of seizure as pain was so bad and it has left side effects. so im waiting on neuro head scan to c hopefully what went on.

lk others have said ask gp why? abd for 2bd opinion x

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Sorry to hear that you have been so ill *hugs* hopefully the scan is okay!

Going to go back to doctors and ask about another referral! x

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I get migraine headaches caused by the muscles in my neck and shoulder going into total locked up spasm .. I was having a migraine lasting 3 days every week...

My GP referred me to my local pain clinic where they put me on 0.5mg of clonezapam at night and every three months they inject my neck and shoulder muscles... I have gone from one migraine a week to 3 in 18 months...

VG x

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Hello, I go to a pain clinic so I think Im going to talk about my migraines to them and see if they suggest the same sort of thing! Thank you x

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That's a staggeringly brilliant result! You must be so pleased!

I'd give anything to see the back of mine, which since chemo have rocketed back up to where they were before thyroid and adrenal meds were started in 2000, but seem to recognise that drug name as yet another one that I've tried and reacted horribly to. Ironically, my bad reactions are essentially migraines :-(

A xXx

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Hi. I was referred to a pain specialist and he tried me on Tramadol and today I am having a occipital nerve block injection done. Trying anything to ease the pain at the moment. Never got offered any other help with dr. X

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Hello, I had the occipital nerve block on the 18th March and its made my headaches worse and Ive had a migraine ever since I had the procedure, hope that doesnt happen to you! x

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Hi,

I get terrible ones. They seem worse since I have had FMS. My old GP put me on Pizotifen to try to control them plus Sumatriptan as the rescue medication.but no joy. I get fewer but they are more violent for want of a better description. I am also on Tramadol and amytrip as well.

While I was visiting the USA last year I had a terrible migraine and a family member who there who is a paramedic told me that Naproxen and sumatriptan are a helpful combination ( you can get Naproxen OTC there). I tried it and it did help.

I do sympathise.

Hugs

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Hello, I was on both pizotifen and sumatriptan and nothing worked for me either! Im a bit worried about trying naproxen again as they cause my mum to have gallstones and inflamed stomach!

*hugs* x

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There's an OTC medicine you can buy, called 'Syndol' - it worked for me when nothing else would touch my migraines. It's worth a try, but check with your pharmacist that it doesn't argue with any of your other medication.

Moffy x

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I've heard of Syndol before but never tried it so I will go to the pharmacy and ask about it, thank you! x

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Syndol is great but as my post above, unfortunately it's unavailable again :-(

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Syndol is great, but unfortunately it's off the shelves again. This happened last year too. :-(

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Hi, sorry you are feeling poorly, migraine is awful. I actually ended up at A+E a few weeks ago it was that bad, turned out to be a problem with my neck!!! I'm having physiotherapy now. Dr's gave me Diclofenac, Not sure if you have tried that but it worked in a matter of 20 mins for me after having migraine for 4 days solid. When I was working in the NHS, we had a patient who suffered cluster headaches and he was prescribed oxygen, it worked for him. Maybe if that's not been suggested you could try that. It can be prescribed by the GP and it come from an outside company who would deliver it to your door, small canisters and if you are travelling they also supply it with a small backpack.

Hope this is helpful,

Regards

Shelley :)

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Hello! I was on diclofenac when I was 16 and it caused addiction so I dont think Id want to try that again but the oxygen sounds very interesting, I have a stubborn doctor so will have to try to persuade her to give it a try if it helps others! Thank you x

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I know Diclofenac doesn't suit everyone, but yes the Oxygen therapy is very effective. There's quite a lot on the internet if you want to print something off to take to the docs with you. xx

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I will have a look now, thank you so much for your advice xx

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your welcome hope it helps xx

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Had really bad migraines for many years, at their worst I could get 15-20 a month. I tried everything to no avail, even went on the trials when Triptans were first launched. Finally settled on Rizatriptan to treat the, but nothing cut down the frequency.

Eventually I was given Clonidine for a totally different condition, and it had such an amazing affect on the migraines, I was only getting one a month, so have been taking them for the last ten years now, with the same results. They might not work for everyone, but they gave me my life back as the migraines were so bad and so frequent I could barely function

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Hello, sorry to hear that you got that many but I feel your pain! I shall ask the doctor about the Clonidine and see what she says about it! Thank you x

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Hi Maladjusted,

Wow, that's the same as me. Imigran (sumatriptan) works for me, as long as it's Imigran and not generic sumatriptan, which has no effect whatsoever. I have the 100mg tabs (the 50mg ones do nothing), the nasal sprays (work if I can get to it early enough in the process) and injections, which are like being stung by a really big bee! But they work, usually quite quickly.

Like you, I can get one a day, or one that doesn't go away for anything up to a month. Intrigued by this Clonadine - what's it for, how does it work, and what are its side-effects? All the other meds here (amytryp, tramadol, naproxen, - basically any analgesic that isn't either imigran or a morphine derivative) make me violently ill and actually GIVE me a migraine.

A xXx

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When I did the trials for Imigran it was in tablet form but once licensed it initially was only available as injections (agony) but they also knocked me out cold. generic Sumaptriptan made me sick, so I had to wait for Imigran tablets. Side effects weren't good, but I didn't care, anything was better than the migraines. Once Rizatriptan (Maxalt) was launched, my doctor invited me to try it. It suits me better.

Like yourself, there are many medications I am unable to tolerate

Clonidine has a few different uses, it works great for me, but not knowing your medical history I'd advise you to discuss it with your doctor, to see if he thinks it would be suitable for you. Personally I wouldn't be without it now, but what works for one person doesn't necessarily work for another, and could even cause unwelcome side effects.

I would definitely recommend you ask your doctor about it though

Em x

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Thanks Em, I'll add it to the list of things to discuss with him when I eventually get my appointment to talk about Vit D dosing and testing with him!

A xXx

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Just ask about getting a vit D blood test done first, then when you get the results back if the levels are low your doc should just prescribe it for you. It's far safer to have it prescribed in the right dosage than trying to treat yourself.

Let me know how you get on regarding the Clonidine, I'd be interested to know if your doc agrees to it, and if it works for you.

good luck

Em x

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Hi Em,

Appt already booked.

Suspect doc will say that as long as the Imigran continues to work, he would be reluctant to change things because of the way I react to so many chemicals. I'll still ask, though :-)

xXx

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You don't take the Clonidine instead of Imigran, you take Clonidine daily as a preventative, and the Imigran as and when the migraines occur. The idea of the Clonidine is to reduce the frequency of the migraines.

I regret to so many drugs but fortunately no reaction to this one

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Aha! I will definitely talk to him about it.......still have a feeling that we've tried it or at least considered it before, and there were problems of one sort or another, but he has a list of Drugs I React To, lol, so I'll see what he says.

Currently on half securon (cal channel blocker) as migraine prophylactic, and if I stop it, the migraines are worse, although having said that, I'm not convinced it does the job, or I wouldn't still be getting them at the frequency and severity that I do.

A xXx

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Hi Just to say, the company who delivers the oxygen is called "Air products" not sure if all surgery's use the same supplier but if you tell your GP that she will know you know its available, may give you more clout when asking for it to try for your migraines. xx good luck

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en.wikipedia.org/wiki/Cloni...

The link will tell you more about Clonidine.

I hope it provides an answer for you. It was like a miracle for me. I began with migraine symptoms at the age of 11, and was diagnosed at the age of 16. I tried everything on prescription, and almost exhausted the health shop

I had an early menopause and initially my migraines got much worse, I had them almost every day, and could barely function. I didn't want HRT, and a locum doctor prescribed Clonidine for the night sweats, and said it Might help the migraines too.

The menopause has been and gone, and the night sweats are worse than ever, but it had an amazing effect on the frequency of the migraines. Every prescription review I have, the doc wants to take it from me, but giving it up isn't a risk I ever wanted to take. It is one of the few drugs I never had a bad reaction to, so I just keep on taking it.

Like Moffy I never go anywhere without a couple of Syndol in my purse, which help if taken at the first signs. Once the migraine arives the only thing which helps is bed and Rizatriptan though they & also Syndol can make some people drowsy, so best avoided if you are driving.. I did once make a 150 mile journey along the motorway doped up on both Rizatriptand and Syndol - wouldn't recommend it :(

Good luck

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Hi Em,

I got sent into a chemically induced menopause early, too (chemo). The pharmacist at my local hospital said that the hot sweats could be controlled with chromium. I take it every day (200mcg), and if I miss it, I'm wet from head to waist again. I also take B3 (niacin), because both chromium and B3 are part of GTF (glucose tolerance factor) and work together.

I'm not sure what the mechanism of action is, but the hot sweats do seem to be connected to sugar levels and blood sugar management by the body. I know that not long before the pharmacist told me about chromium relieving the sweats, I had noticed that I tended to get them 20 mins after eating anything sweet, so it made sense to me to try it.

A xXx

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That's really interesting Angel.

My menopause was natural, but began at 41. My doc said at the time it was possibly caused by my thyroid imbalance.

I have suffered night sweats ever since, and occasional daytime flushing, even though menopause was over with years ago. Firstly I was told it was caused by menopause, then by thyroid, and now of course they blame Fibro. I don't care the cause I just want it to end, as I have to get a shower in the middle of the night, change the sheets and turn the duvet over. I have bought all the climatic controlled duvets, underblankets and pillow to no avail. Tried the cool gel pads, but they take my body heat and then work like hot water bottles. The Clonidine was prescribed 11 years ago to stop the night sweats. It didn't do a thing for the night sweats, but has been terrific for slowing the frequency of the migraines.

Do you get your chromium on prescription, or buy it privately? If privately how did you know what dosage you needed?

Em x

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Hi Em,

I went fir the Three Layer approach - I have a sheet, a duvet, then a heavy throw over that. As soon as I started to feel a sweat coming on, I stripped back all three layers, then as it passed and I cooled off, I would put back first the sheet, then the quilt, then the throw. It still happens to a very small extent now, and more so if I forget the chromium.

Re dose - I have a massive library of natural medicine and nutritional medicine books, so I checked with the likes of Patrick Holford, Sarah Brewer, Mervyn Werbach, Michael Murray, etc etc, and it was the recommended standard supplemental dose. According to all natural medicine practitioners, the therapeutic dose for everything is always higher than the ultra-conservative RDA, and sometimes higher than the given UL (upper safety level), but as always , you should do your own research to find out what nutrients at what doses are right for you. I think I also asked this pharmacist what dose she recommended, and it was the same 200mcg (micrograms, not milligrams( that my books said.

Best form to take is chromium picolinate. Avoid any minerals that are the Oxide form, as these are very difficult for the body to use, which is why oxides are cheaper than all the other forms available.

I still need to find out what the connection between sugar and hot sweats is, but there definitely is one (at least in my case and cases that the pharmacist had seen), and it definitely responds to chromium. You might well be different - have you noticed if eating something sweet triggers a hot flush within about 20 mins? That would indicate to me that you might also benefit from chromium.

You can get chromium from all health food shops, like Holland and Barret. I get my supplements from somewhere in the states, as it works out a lot cheaper, even if you do have to pay vat on top if the powers that be spot your parcel coming in!

Hope this helps,

A xXx

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Thank for the information. I have made notes. By day I am usually too cold, even wear a cardigan in summer, and right now am still in my thermals. Night time is a different matter though. Only a 4.5 tog duvet and cotton sheet even in winter - sheet only in summer. I am quite chilled when I go to bed but take me no time at all to overheat. I am up and down all night, ripping off sodden sheets, and going for cool showers. I think my thermostat is broken.

Menopause was years ago, finished 9 years ago, no daytime sweats or other menopause related problems since

I can't tolerate any oestrogen, not even plant estrogen - bad reaction.

Might look out for the chromium, I seem to recall taking it years ago for some reason nor another - can't recall the reason but it does sound familiar.

Thanks again

Em

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Em,

Low thyroid really messes your hormones up, the same as fibro does, because both of those things leave the body without enough energy to build the relevant conversion enzymes and their processes to convert nutrients into hormones, or to maintain them in balance with each other. It could easily be the thyroid problem that caused you early menopause, and the fibro won't have helped.

I used to have (pre cancer and loss of oestrogen) horribly heavy painful periods, and I was what they call Oestrogen Dominant. I have been using natural progesterone cream (transdermal) since 2000, and it really helps me.

As a point of interest, when I got dx'd with oestrogen breast cancer, I was at a loss to understand how, with all my knowledge, and all my preventatives like only eating organic, using the right supplements, etc, I had still managed to get cancer. Turns out that without sufficient thyroid hormone to pick up the oestrogen and transport it in the body to wherever it has a job to do (a bit like a minibus with a foreman collecting a group of workers and taking them to the job site), the oestrogen sort of sloshes around and ends up being dumped by default in the breast tissue, whereupom, over time, the accumulation causes.....oestrogen breast cancer. The "minibus" in this case is a protein called SHBG, Sex Hormone Binding Globulin. At the time of my dx for cancer, I had been forced to reduce my thyroid meds by a very hostile endocrinologist who insisted that I was likely to drop dead of a heart attack at any moment die to the amount I was taking (prescribed, via my GP, all above board, not self-medicating). What she would NOT accept was that my cells are apparently resistant to thyroid hormone (receptors get a bit switched off if they go through a long period of non-activity, like mine did), and just as they do with insulin resistance, you have to throw a lot more of the substance in to get the same results as a normal body would show. As long as I keep monitoring myself for signs of HYPER thyroidism (I never have any, at all, ever), me and my GP are happy that I am not about to become thyrotoxic, have a thyroid storm, a heart attack, or anything else. One of the first signs is producing pale floaters in the loo, because fat digestion is impaired in hyperthyroid situations. Another is red palms. Another is dramatic weight loss and violent mood swings, and a ton of energy leading you to run round like a looper. Also the bulging eye thing that you see sometimes. I still have all the recognised signs and symptoms of an underactive thyroid, and I did eventually get the hospital concerned to recognise this, and for me to see the endocrinologists' boss. The endo had forced me to reduce my T3, and it made me very ill. My tumour went from 2cm to 4.5cm in a matter of a few weeks, and the one single precancerous cell they found in July became "too many to count" by August. I don't think it's a coincidence that my cancer accelerated in line with my enforced T3 reduction.

Whatever happened to First Do No Harm?

I don't think for a second that the oestrogen thing applies to you, because you are already menopausal, so by definition have very low oestrogen, but you might like to investigate progesterone and its relationship to oestrogen - both are involved in bone health, and the body doesn't read actual values of chemicals, it reads the relative values between pairs (usually, but sometimes more than two) of chemicals and reacts accordingly. Thus, even with low oestrogen, a body can still display signs of being oestrogen dominant IF the progesterone levels are even lower.

A xXx

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hi i agree you need to see a specialist..demand to be sent to one..plus i suffer from migranes and i am on MAXALT wafers..20 mins after taking pain gone!..they only work for migrain so if it doesnt go its not a migrain...they are a tiny wafer that melts on or under tongue xx

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I'm taking Topamax (Topiramate) at 50mg per day. It is a preventative and needs to be taken every day.

I was getting 1-3 migraines a week with extreme sickness/vomiting & using strong coffee & bags of sweets to control them as I can't tolerate strong pain medications.

I've not had a single migraine since beginning this medication last September (2012).

There are side effects listed but the only ones I've had are dry mouth & sleepiness which doesn't matter as I take it at night. I admit to being quite concerned as some of the listed side effects are the same as the symptoms of Fibro. In the end I figured what did I have to lose? I could always stop it.

However within 3 days of beginning it my husband noticed that the severe fibro-fog I'd been experiencing for over a year had lessened and within a week I was back to 80-95% cognitive capacity. I can now actually remember what I ate for breakfast and where I put my keys.

There are still days/times (stress situations) where I have some foggy periods but nothing like it was & they're gone in minutes. For me it's been a wonder drug.

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Wow, Jeniwren, that's fantastic!

My migraines are horrendous too - complete with the throwing up for England stuff. I can tolerate and get relief from using Imigran, but no other generic sumatriptans, and it has to be 100mg tabs and the higher dose nasal sprays. I also have the injections too. They hurt like mad, especially now that my thighs have been so often punctured by that needle that they have got even more sensitive and painful (my physio says the fibro body over-manufactures when it's replacing damaged nerves, with the result that we ARE in more pain than a normal person, because we have more sensory nerves).

I'm wary of trying new drugs because I'm so ridiculously intolerant of so many of them. What does the side effect list say, apart from dry mouth?

We also find that ice packs strapped onto my head help. It probably looks insane, and we took photos to show DWP what happens to my face (balloons up) when I get a migraine, and I look like a mad bag lady, but the coldness really helps.

Be careful of the innocent -sounding dry mouth thing - either or both chemo and amytriptaline gave me dry mouth, and wrecked my teeth. The saliva is crucial for maintaining the health and integrity of the teeth. I had to have so much repair work done after chemo, I have a small cosmetics jar full of bits of broken teeth. Pieces just fell off. Several years later, and off amytrip and chemo for same amount of time, teeth still cracking and breaking off. They've really been wrecked by having the dry mouth side effect. So be careful, sweet thing !

A xXx

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I get migraines and have many triggers. They are horrid things. My triggers are hormonal, travel, fatigue, stress, wine/alcohol (can't drink it any more sadly). There are probably others. I have to have a hot water bottle on my head and take painkillers every two hours. Usually alternating, Nurofen X and Paracetomol so I can take something every two hours but it only ever alleviates, the migraine has got to run its course, I find, which for me is 2-3 days. 2 to 3 weeks sounds awful. Syndol are good but as I said above they are unavailable again.

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Syndol not available AGAIN?? Oh no, I should have stocked up when they were back on sale. I know last year there was some problem with licensing and they along with my favourite painkiller 'Propain' just weren't available. I know Syndol came back, but never did see Propain again. Boots sold me their own brand Paracetomol /codeine combo, and said it is the same thing. It;s similar, but not the same.

I wonder how long they will be off the market for this time?

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I don't know, Maladjusted :-( I did buy a couple of boxes of 30s last time and am trying to eke them out.

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I will say that the ingredient in Syndol which is good is Doxylamine (scuse spelling). You can buy that online in Kirkland's Sleeping something or other and mix with CoCodomol to get similar, I've been told but please note this advice is from the internet and secondhand. The Kirkland's come in 25 mg (?) whereas the amount in Syndol is about 10 so would need to half the Kirkland's. Apparently Doxylamine is also in anti-histamine tablets.

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I'll look out for that ingredient. thanks for the information. My son also gets really bad migraines, and swears by Syndol. as he also gets Hayfever, I will just look for whichever anti histaminehas that ingredient in, and he can have them with the Co-Codamol

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You're welcome. My sister also swears by Syndol and she tried my Kirkland's with CoCodomol and she used a whole one rather than ha;f and found it helpful for her migraine.

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I found the Kirkland's Doxylamine on Amazon. I know i can tolerate low doses as it is in Syndol which never caused any problems for me, so I have ordered a box.

Thanks for mentioning this

Em x

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You're welcome, Em.

I've still got some Syndol but my sister uses the Doxylamine that I ordered off Amazon with Paramol (I think). You could also use them with CoCodomol as both would then make up the 3 ingredients in Syndol. I worked out that you would only need to take half a Kirkland's to get slightly more Doxylamine as is in Syndol. I think half was about 12 and a half whereas Syndol has 10. But my sister takes a whole one with noa dverse side-effects except to eel sleepy but that's what Doxylamine is meant to do :-)

Best of luck!

K xx

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I have horrendous migraines - on topiramate and now get cerebral block injections but still get them - currently lying in bed with head propped up having taken further maxalt melt and pain killers on top of all other meds and still agony . I dont think there is a cure per se for everyone unfortunately - certainly not for me and like you mine can go on for day s - im hoping botox injections in the future may be the answer ! good luck ...... I feel your pain and share your frustration

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I was put on beta blockers for mine about 11 years ago and only occasionallyhave one x

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Thank you everyone for you kind words, makes me feel better knowing im not alone!

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Hi all I take it migraines are common among us poor fibrmites as I also get the and so did my mum I remember creeping around on tiptoes evey time she had one when I was a child she was finally diagnoses with fibromyalgia in 1998 took them long enough but she was diagnosed with ME in 1979 she usud to take migraleave think that's how you spell it, I'm on Maxalt Melt 10mg Oral Lyophilisates ( Rizatriptan Benzoate) just copied it of the sachet, I'm stuck in bed again but not a migraine today it's my hips woke up at 6am after a badly rest less night unable to move I was laying on my right side had to get OH to turn me onto my back then had pain rip through my hips so bad I cryed its eased abit but having to top up Fentanyl patch with oromoph but still can't bet out of bed, don't know wich I would prefer a migraine or my hips, ah well life gos on as they say, gentle hugs to all . Sithy

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Hi notofibro

I have not read all the messages so not sure if the following has been suggested.

For the last twenty years I have taken Diclofenac Sodium ( volterol) 100mg Suppositories for a migraine attack. It takes away the pain of migraine from anything between twenty to forty minutes, an hour at most. There are pills now available though I have never taken it in pill form so I cannot tell if the pills work as well. You would have to see your doctor for a prescription.

I have had frequent migraines for many years now and Diclofenac has been a life saver. I know I went for several years when nothing even eased the pain until Diclofenac came along.

I also have tension headaches everyday and at one time I had these all the time sometimes so bad it was heard to differentiate which headache was which. So you need to know if all your headaches are migraine.

I hope this helps I know how awful migraine is, particularly in additon to other headaches it's a nightmare.

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Here's everything you need to know about Topamax or rather the chemical name for it Topiramate.

en.wikipedia.org/wiki/Topir...

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