I'm at the end of my tether and I really need some help/advice.
I have had migraines for 10 years now, usually stress and hormone related.
Tried about 4 different preventative treatments, none worked so I 'manage' on triptans. ...
On the 23rd Nov 15 I had an attack - I put this down to the fact that my monthly cycle was due in 1 week so I began to rife it out with my symatriptans.
But it kept coming back every 4 - 6 hours later.. its now the 12th December and im still here in the same place. Iv had about 12 hours of pain reflief at most. Because it's been continuous, I have been taking a mix of ibuprofen and co codamol which I'm aware probably hasn't helped the situation.
This happened exactly the same time last year so I'm beginning to wonder if the weather/season is playing a strange role. I live on London. When it happened last year, the doctor changed my triptan for a month to Rizatriptan which after the 12 tabs, the migraine started tapering off and I ended up with my usual cycle. I could have sworn it was not as drawn out as this migraine though.
I'm currently lying here, in so much pain and I'm trying to hold off taking tablets because I'm worried about medication overuse but I jus can't handle the pain.
I'm stuck in a cycle which feels never ending. It's 85% in my right side - my face feels bruised from where I've rubbed my temples and also my face as it felt like I had a migraine in my face.
That feeling I take when I have a triptan is amazing as it starts to subside but then I spend the rest of the day worrying when the next one is going to hit me...
Has anyone has such a long episode before ? I could really do with some advice as I feel so depressed
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I sympathise deeply, I had an episode in the early-winter of 2013, where I was 'chasing' a migraine for somewhere between eight and twelve weeks, I stopped counting after 24 aura-onsets, and no full-blown migraine. That was part of my acknowledgement-slide into the change in my migraine, I'd had sneaky-silent migraine for a couple of years, all of the nauseating-vertigo stuff, the slurred speech, the one-sided weakness, the visual disturbance, the 'think-limp', but not the excruciating pain. I'd been staving-off the 'go to BED!' with cycling codeine and ibuprofen, and I thought I had a grip on it, until mid-to-late-October 2013.
I'd approached my GP, to tell him my migraines were changing, in structure, and frequency, and the only 'external' change I could correlate to was the 'low sun' in the morning, as I walked to work triggering the damned things. Patronising as ever, he said "Oh, bit of a SAD-girl, are you?" (Girl? I'm 38 now!)
Anyhow, he prescribed Triptans, and, when I went back, a month later, for more, he doubled the dose, because they were relieving some, but not all of my symptoms. When I realised I was about to pick up my third prescription in as many months, I realised I was probably over-using.
I'm exceptionally photosensitive, always have been, certain types or qualities of light 'set me off'. Analytically, I know I'm worse in early Winter, and I have never quite been able to bottom-out whether that's the quality of the light, or just the collection of 'other' health issues I have that make cold-dark season particularly difficult for me. Realising that I was effectively eating Triptans, and STILL perpetually on the edge of a migraine. (The aura-stage isn't as bad as a full-blown migraine, but it's still exceptionally wearing.) I had my eyes tested- slight prescription, but the optician admitted she'd be taking money from me for no reason if she insisted on corrective lenses. I'd read a bit about Irlams and migraine, and all sorts of other potential issues, so decided to try tinted lenses. I was lucky, in that I instinctively picked the 'right' colour straight away. For me, it was bloody PINK, which is a constant source of amusement, because I'm very-much not a 'pink' kind of female. I tried grey, no effect, and green, made it worse, so, ever since, I've been wearing glasses with a pink tint on the lens, 10% tint for indoors, with the fluorescent-lighting that can set me off if it's a bit 'trippy', and 40% tint for the days I walk to work when the sun is low-bright.
It's working for me, which is great, because the alternatives seemed to be eating Triptans, and facing the inevitable rebound-migraine, going on some sort of a 'list' with the local pharmacies over my monthly purchase of co-codamol, or finding a job that wasn't due-East of my house.
Other than that, I'm trying to eat right, and sleep right, and make sure I drink enough water- I'd never equated the 24-hours-in-bed with the horrible 'hungover' feeling the day after a migraine to simple dehydration, but, there you go.
Not saying it will work for you, just saying that, after two consecutive winters acknowledged to be plagued with migraines, and possibly some before that (when I was on a weird combination of anti-depressants, and arthritis medication, so probably didn't notice much of the world around me.) the pink lenses are the only real change I've made, and this Autumn/Winter, and the two before, have been less "Oh, GODS, not again!"
Thank you for your response Gaia_rising :)you seem like you have been through the wars ! I'm glad u have found a solution ..!
I have spent the weekend in a lot of pain by making myself go cold turkey on the codeine. Only allowed 2 rizatriptan on 24 hours and because it kept comin back, I spent hours riding it through. Thankfully, yesterday it finally began to subside. I went and got my daith pierced today which I have heard can relI eve migraines. It was on tv recently. No medical evidence to back it , and depends on the individual but I was willing to give it a shot! Keeping a diary so will b monitoring it now...
I hope u are not in too much pain. Hopefully there is some light at the end
I have suffered migraines since I was a teenager never quite worked out the trigger but hormones, chocolate, cheese the weather don't help. I have never suffered one that has last more than a couple of days without any relief. This may seem crazy but try a hot water bottle on the are where the pain is centered I know most people advise cold compress but myself, my mum and brother, we all suffer badly swear by a hot water bottle, and a darkened room. A cold compress has never worked for us. Don't ask me how it works but it seems to relieve the pain. good luck
You poor thing. I totally understand. I'm on my 7th day of nibbling on triptan and drinking soluble codeine. Willing for this migraine to go.
You mentioned hormones and I'm just trying to relate as I have the same (mid cycle and end of cycle).
Mine are hormone related and late year I was referred to an NHS gynae unit.
They suggested switching my cycle off with monthly injections. The theory being that when my mother had a total hysterectomy and ovaries removed (she was on her early 50s) her migraines stopped ( I was *that* desperate).
I am currently on a sabbatical in Italy with my 5 year olds. so not practical for me.
I went for a Harley street gynae scan last December (it was seperate peace of mind appointment) and the Dr who did it (Davor) suggested cerazette which is a progesterone only pill.
it's great as I don't have a bleed. I was so hopeful! but...after a year of taking them (they are basically a daily contraceptive pill but for my purposes a hormone treatment to try and switch off my cycle) it's better but they are getting worse and my body seems to be fighting them if that makes sense. At first they were better.
A nurse at my GP surgery suggested the coil. If appropriate for you, why don't you look into managing them hormonally? I'm not going to give up with trying to manage them that way as I've read and spoken to women first hand that it works!
I totally understand about the tension thing. I take a triptan, codeine / ibuprofen at the same time and then when they've worn off I usually wake up feeling like I've undergone brain surgery!
Ouch
When syndol was available in the UK (it had that magic muscle relaxant). They were great. I'm going to go to my GP next week when I'm back in the UK for Christmas- to ask for something for what I'd call extreme muscle tension. I get hard lumps on my neck and at the base of my skull. Massage doesn't work for me either. There's only so much arnica I can run into my neck. I'll try and report back as to what I was prescribed.
I'm just sat here feeling like I've had battery acid poured in my ear and like someone has whacked me 1000 times over the head with a frying pan. It's rubbish and depressing, I totally relate.
I'm on my own with my little boys (supportive partner who works in London, we'll be back with him next year) so life has to go on. I remember my mum spending days in bed ( even over Xmas) and it was depressing for the family. I just do my best to try and mask it in front of my kids. Obviously zonked and noise sensitive.
I have so much go in me, I work for myself (I'd dread working for an employer again with these migraines - embarrassing :(. As a family we're on an adventure, we're living life and then at times of extreme pain i find these migraines totally debilitating. I have days where I am lucid and full of energy them BOOM! Can't work, look dazed, in soo much pain, wondering if my stomach and system can take any more tablets. I also get anxious and a little paranoid that I seem spaced out, find it difficult to communicate with people when I'm suffering so much. I worry I must seem out of it.... Which I probably am! It's embarrassing.
As I said, try and manage the hormones. I have other triggers (perfume, stress, lack of sleep) but the monthly cycle is the main cause
Oh my it's like reading my story of migraine reading your post. I too used to suffer my worst migraines just before a period. However I had a hysterectomy at 38 and it didn't help. In fact I'm in the menopause now and they're worse than ever.
I've tried every combination of very strong, mind altering drugs and injections in my neck. I'm trying to come off pregabalin, at half way through the withdrawal I feel dreadful. The spins in my neck , shoulders and head are un bearable. I have a full time job and am struggling.
As you said syndol used to do the trick at the end of a massive migraine they just relaxed my head. There just doesn't seem to be anything the same. I try to avoid the sumatriptan but have to use it for some relief.
Sorry for the rant I've just had another sleepless night because my neck is so painful. Take care .
Poor you. I won't give you a long speech about my experience as you are obviously in pain. Mestrual migraines are hard to control as usually triggered by a mixture of additional stresses. Firstly, codeine can and does cause acidity so I would stop for now. Also too many triptan may cause acidity also. Sounds bit severe but you may need to be sick and get it all out system. A high alkaline diet and low acidity diet will help reduce inflammation (this is important and if you need more info let me know). The hormone treatment lady above mentioned may help if hormonal. I just want to give you a few contacts. I have a fantastic osteopath in High street Kensington depending on where you live she may come to you. She has relieved severe migraines with cupping which draws all deep toxins out deep muscle tissue. Her name is M.L Mahieu Her number is 02079371414 She mentioned a lady who was in hospital for two to four weeks with no result but she cured it with cupping. Also you can contact Dr Adil who is the most fantastic chiropractor and may refer you to someone nearer His number is 02084668283 Try meditation. This is suprisingly easy and effective. Lie on back with palms resting on abdomen and feet relaxed or knees bent. Now, be patient, breath in through nose for three, you should be loud lol, and out through NOSE not mouth. Repeat for ten to fifteen minutes. Please try as natural pain relief. Ice pack or peas etc to reduce inflammation. Hope that helps. Debra
Thank you so much for your reply and the contact. I have weaned off the codeine now as I know it's bad news.
I'm near Croydon so a bit far from the contact you gave but I am most certainly saving those details.
I got a daith piercing today so I will see if it helps. Been hearing a lot about it. I'm interested in the cupping though so may make a mission into London in the new year. Thank you
Funny actually becasue your migrane journey sounds similar to mine. I too was on cerzette a couple of years ago. It wasn't doing much for me as I kept spotting and never knew where I was ! So I was having random migraine spurts ..
I do rememeber Syndol as I used to take that before I was introduced to triptans. Worked pretty well but for me it's the triptans which give relief. Iv managed to wean myself off the codeine. I'm taking 'alka seltzer XS' now if I'm not having a full blown attack. Maybe give it a try?
I also got a daith piercing today. It's in the inner ear. Not enough medical research done yet but a lot of personal testimonials on how it knocked out migraines in individuals - so I will wait and see. It hurt a lot but worth the pain if it wipes them out. Google it, you may find it can work for you.
My neurologist limited the number of triptans I could take in a month to 8. Although these might be the only medication to bring you any relief they are also a cause, along with cocodamol, of rebound headaches. I no longer take cocodamol just aspirin and try to limit my intake of triptans. I was having 25 days a month of migraines, I'm now down to around 9. Hope you feel better soon x
So glad to hear your have been reduced . I get given 12 triptans which last for about 3 weeks... lately I been getting them weekly I think i would cry if they got reduced. ...
My neurologist said the same no more than 8 a month. It's damn hard when it's the only thing that you know will give you relief. Sometimes I take half, sometimes it works, other times I desperately take the other half. I feel like a flaming junky. Wish I could help, when it's at its worst try a hot hair dryer 'sometimes' works for me but like most things/drugs they work to begin with but then the migraines try so hard to get round them. Wish to God they would find a cure
I have just got a daith piercing which it's been in the news recently for reducing or even gettin rid of migraines.I will definitely keep you all updated for if I get any pain relief from it.
I had that done nearly 5 weeks ago and was pain free for 3 weeks. I was absolutely thrilled but gradually the migraines have started sneaking back in but definitely better than they were. Good luck
I do feel for you,I have been there.Lost so much weight with being sick so many times. In the end I needed injections to stop me from vomitting. You will have to cease taking all medication. You Have to do that if you want to limit those migraine episodes. You are now suffering from rebound headache combined with migraine. Co-codamol, any tablets with codeine or caffeine are a no no. Read my previous epistles on this site. Migraine can be triggered by so many things, hormones fluctuations, barometric changes, what you eat and drink , no regularity in your life I.e. Too much sleep, not enough sleep. Being dehydrated. The list is endless. Get referred to neurologist to find underlying issues. In my case it was a difficiency in vitamin B12. Read up on that, so much information on the Internet. Other people on this site have different reasons why they suffer like they do.
You have to find the energy to start helping yourself, that is what will get you back on your feet. It take discipline and courage. It Will make a difference. I still get the odd one and live with them without now having to lock myself away in a dark room with a bucket. I wear sunglasses the entire period, force myself to keep my 'normal' routine of the day. Get out to get fresh air and eat small amounts regularly. Turn my computer on low level brightness. Etc.
Please let us know how you manage, but remember lying in your bed for days on end isn't helping, you know that already, the same with taking pain 'relief' , the word itself tells you the truth. Bring you body back into balance and with some like us the balance is very delicate. Write a food and drink diary. Read the labels on the food you buy. I even found that the 'fresh' meat I bought at the local supermarket had Ascorbic Acid added ( on the back of the packet in small letters. ) I am sensative to anything citric so I was very much surprised to find this added to just 'fresh'meat. Additives to any food products aren't added for your health but only for prolonging shelf life.
I wish you strength to get through this, you need it.
I did not know that about the meat, quite scary when you find out the real processes in foods.
I have managed to wean off the codeine... One day maybe the triptans too but going step my step. Endured the worse migraines over the weekend but cutting the codeine - I felt like I was being punched in the eye constantly. Now I have got a daith piercing, I'm praying it's going to work likepeople have been claiming. Plus a few lifestyle changes. Fingers crossed !
This is probably going to sound mean but stop taking pain relief trust me it is making it worse, sounds like your probably have rebound headaches and codeine is the worse for it, stop taking all including the Triptan because if you over use on this it can cause rebound headaches as well. Speak to gp to get help but if you stop now taking it all u will feel rough for a few weeks but then get better but if you continue to take pain relief you can put yourself in a worse situation and will take longer to get rid, it's a nasty cycle. If it helps seek help from the migraine centre in London there really good and very supportive.
I have been through it I know how it feels an I ended up having 4 months off working as was not back to proper self until 12 months later.
I have weaned off the codeine now. I know the triptans also are bad news in response to rebound headaches which I know I have had . It seems that comin off the codeine has bought a little bit of relief after the storm....
Yes I was told to come off all meds too. Thought my head was going to explode but was warned that they would get worse before they got better..jeeeez how right they were
Ouch! I myself currently suffer from daily migraines. Several months back I had a similar episode, it seemed there was nothing I could do to get on top of the excruciating pain. It was a Saturday so doctors office was closed. They're was no way I could sit in the er and even then all they do is give you a migraine cocktail of benedryl, promethazine and if you're lucky some morphine and try to get you to sleep thinking that will solve the problem. So instead I called my neurologist after hours number and the on call resident called in a script of 6 20mg prednisone tablets and had me take 2 each day until I could get in the office to see my regular neuro. It was amazing. Within an hour the pain had subsided by at least 75%, and the next day completely gone. It stayed gone for about 4 days and then I was back to my normal migraine schedule. If you can get your doc to do that (not sure how things work in London, im in the us) it's worth a shot. Im so sorry you ate in so much pain and I can totally empathize. GL and hang in there!
Im currently waiting on my insurance to authorize botox treatments. Edited to add that im 37, had tubal ligation 16 months ago after my baby was born and have suffered 1-3 horrendous migraine attacks daily. I bf my baby but we are weaning. Can't have hormone levels checked until 4-6 weeks of no breastfeeding. Psychiatrist suggested a special light that helps seasonal affective disorder but I haven't done my research yet. The headaches got worse about 2 months after the birth of my son so I really think I may be suffering from TLS and that these migraines ate hormone related.
I have just had a daith piercing which allegedly can get rid of migraine pain so will see what happens and update you all..I'm. So fed up of painkillers I jus Want some relief !
I hope you find a manageable way to help things...
At the start of 2015 I experienced a change in my migraines. From late January onward I was getting more and more attacks. Eventually the migraines became daily, for 7 months I had regular 10 to 14 day migraines. I would get a day without & the cycle started again.
I recently saw a specialist & went cold turkey for 2 weeks. It was incredibly difficult and almost unbearable. But now 6 weeks on I've only had 5 migraines total. In my case the extended migraines were because of medication overuse. I now am on Epilim as a preventative treatment and Almogran for attacks.
I can share with you what the specialist told me:
Do not take more than 12 migraine medication pills in a month.
Any codeine medications can bring on an attack.
Medication overuse can extend an attack.
I found that information helpful, I hope it can help you.
Thanks for your reply. I managed to wean off the codeine and intend to stay away from it.
Thankfully I had only 2 days of the cold turkey feeling from the codeine so I'm hoping that's it for now
Hi, I was so sorry to read about your awful spells of migraine.
A few years ago I had a really bad spell too and after taking medication on 17 days of one month I got an appointment quickly with the National Migraine Centre who diagnosed Medication headaches. This is the link to details all about this condition
I do hope you find something to help your migraines - don't give up trying as different things help different people.
Hi, I'm so sorry to hear of your awful long migraine attack. It rings a very familiar bell to me. I've read the other replies, and agree with alot of what they are saying. Codeine is probably the worse thing for you to take, and unfortunately, if you can, try and break the cycle of taking pain killers. It is actually making things worse.
However, one thing that did sound very familiar was when you said your face hurt and it felt like you had a migraine in your face. Has any doctor ever diagnosed you with migranous neuralgia? I have had migraines from the age of 2, and I'm 35 now so I'm pretty much used to dealing with pain. But this year I was hit with 2 episodes virtually identical to you. As I'm under a Neurologist for receiving botox, he diagnosed it. I was so releived I was quite scared at one point as the pain was so intense on top of already intense migraine pain. I'm now on Pregablin everyday, which doesn't stop attacks coming, as once the nerves have been damaged and squashed it does reoccur, but they have definitely cut the attacks down!!
Don't lose heart. I had an episode that lasted 8 months, during which I had a migraine almost every day. I had to try many, many treatments before finding a combination of treatments that worked.
Triptans are designed to abort a migraine, and are best taken as soon as you sense that you are about to have one. That said, they are not meant to be taken every day! For me, they never worked at all.
After 8 months of hell, I finally discovered that my migraines are triggered by muscle spasms in my neck. Because I was experiencing referred pain in my head, I hadn't even felt the pain in my neck until 6 months in. The combination of treatments that finally worked for me was:
1. Topiramate
2. Steroids (methylprednisolone).
3. Rest and regular stretching of my neck muscles.
4. hydroxychloroquine (for an underlying auto-immune disease that I suffer from.)
Steroids: I started with something called a "methylprednisolone dose pack", followed by a low dose for 2 months until the headaches subsided. I highly recommend asking your GP about a steroid "dose pack". It is a 1 week, large dose of steroids that finally broke my migraine cycle. Steroids should only be take for a short duration of time. It can be extremely dangerous to take steroids long-term.
Topiramate: Can be taken long term, although some people find that it has serious side effects.
I'm so happy to hear you have found a combo that works for you. Unfortunately I had a bad time on topiramate some years ago so stopped it. Preventatives have just never worked...
I'm thank full for the triptans as they have bought me relief. It's just being able to take control which I completely lost last month and this month , hence the overuse of codeine etc.
Hopefully now that I have just got a daith piercing today, it will be a miracle that helps!
Hey! Did you experience any side effects from the steroids and did they help all head pain or just the migraine attacks? I have constant pain that varies in severity and full blown migraines that are triggered at any point. For four years straight. Had to stop working etc.
I was interested by steroids but worried about side effects and that if it did help it would just stop helping when I stopped it.
God, sorry to hear that. I thought my 5 day one in bed straight over NYE was bad enough! Was very depressing. Taken a day off work to go to docs today as I have had enough also.
Has anyone else tried tried a hypnosis app for migraines for these really bad ones when you have to stop taking the triptan's to avoid them causing more migraines. The programmes send me to sleep for a couple of hours. I wake up with pain, listen to the app again, and am able to go back to sleep. Not a cure, and I don't think they actually hypnotise me, but at least they help to get me through the days (and nights) until the migraine comes to an end. I think the main benefit is talking you into complete relaxation, as just not knowing when the migraine will come to an end makes you stressed and tense and makes the migraine worse. The apps I use are Get Migraine Free from Get On Apps and Migraine Relief from Interact.
I'm hoping you found help by now but the new drug memantine seems to be the new answer for headaches and migraines. It is being prescribed off-label. FDA approved only for memory loss. Myself and two sisters are on this medication 10 mg one with breakfast one with dinner stopped 90% headaches and migraines in the month it's just wonderful I hope you get a chance to try it.
I got a notification in NY inbox about your reply and had to come check it out. Thanks for posting that, it will be something I will look into. I think since this post, I changed the types of triptans a few times and I have been using Frovatriptan for a few years. I have managed to get a hold of my migraines , I have about 12 attacks every 5-6 weeks which is a vast improvement to the cycle of being stuck like this initial thread. But thanks, I will definitely look into your suggestion!
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