Back to back Migraines - how do you medicate?

[clairefyfe]

I suffer chronic migraines. I attend the neurologist and had botox 7 weeks or so ago. I am currently take pizotifen as a preventative treatment. Nothing is working. The neurologist are always banging on about the fact you should only be taking meds (Almotriptan at present) three times a week or it'll cause rebound headaches. That's all very well if you only have three headaches a week. This week alone I've had 8! What do I do? Suffer with no pain relief? I'm ready for cutting my head off 😭. Please help

[Cat00]

I don't understand how you can have 8 in 7 days? My neurologist is a lot stricker than yours, I'm aloud 6 triptans a month and 2 days of something else. Which works out at less than 2 days a week of effective painkiller. They only work about 60% of the time anyway, so really it's less than that. But I'm afraid that means I have a lot of migraines I can't take anything for, that is just the reality of being a chronic migraineur. I drink coffee and try and eat a lot to keep my energy levels up. If I can get help to look after the kids I'll just try and stay as still as possible and wait it out, but if not I just have to suffer while trying to help the 1 year old because obviously he doesn't understand I'm broken, the 5 is a marginally better!

[clairefyfe in reply to Cat00]

Some days I can have 2 a day. One fully clears and then I have another one. I work full time so suffering is not really an option. I'd love it to be.

[Cat00 in reply to clairefyfe]

I think you'll find it isn't two separate migraines it is just the initial migraine returning. Migraines commonly take a couple of days to form, the pain starting 48 hours into an episode. Chronic migraineurs are almost always in some kind of episode, the brain is hyper stimulated and unable to dampen the pain pathways. Sleep, hormones and stress being the most common triggers turn a chronic migraineur into a hyper vigilant person who becomes over- sensitised to their environment. Triptans and Opioids also over stimulate pain pathways, in the same way environmental stimulus can become triggers so do they. It is a vicious circle that can only be broken by withdrawing these stimulus.

Whether you have a full time job or not, no one wants to go through the pain and loss that a life of chronic migraines give you and indeed all of us on this forum. I have a 1 year old and a 5 year old and 4 delightfully interlocking chronic pain conditions of which chronic migraines is one. Not to mention a dying career i went to uni for 6 years for. None of that matters because the facts of chronic migraines are the same for everyone.

If you have identified a lovely simple thing like a food trigger then you can obviously go ahead and just not eat that thing, but there are many reasons why a food trigger is unlikely if you are chronic, the exception being Celiacs. You cannot get around the painkiller thing, I would also suggest your neurologist is wrong and that 3 a week is too many already. Once the brain has become hyper sensitive the only things we can do are to try an encourage a life with less stimulus. Regular sleep, menstrual cycle management, meditation ( or anything that makes you more relaxed like exercise, not alcohol though ), you need to rediscover things that make you happy and try and bring more of those things into your day. If work is where you need your energy then you'll have to make that your priority and do things that support that task.

There are things thats others have mentioned like GON injections, Transcranial Stimulation, Cephaly devices etc. Some people swear blind on entire food group dietary changes but personally I think they cause a lot of stress and have poor supportive medical evidence. If you do, however, decide to try to find a food trigger remember it has to be something you ate UP to two days before the pain, not necessarily two days before, ANYTIME time two days before. Once you are very chronic triggers don't really exist anymore because everything is a trigger, then you just have to learn to live with the pain and get on with your life. It's amazing what you can achieve despite all of this.

[clairefyfe in reply to Cat00]

Thanks for your response.

I'm sorry you are struggling with your career too. I want to continue a normal working life by migraine is getting in my way.

Although i'm certain you are very educated in migraine and migraine management, I will heed my neurologists advice for now.

I've suffered migraine for 40 years plus, so believe me when i say, i have tried finding my trigger. I meditate daily, and have done for 5 years or so, I no longer have a menstrual cycle following a hysterectomy ten years ago, so can't even blame that.

I too also have another chronic illness which i have to deal with daily.

I didn't put this question on health unlocked because i'm feeling sorry for myself, i put it on to ask what everyone else does with daily debilitating pain.

I don't mean to come across as ungrateful for your advice but being told 'to learn to live with it' is not helpful advice in my humble opinion.

[Cat00 in reply to clairefyfe]

When I say "learn to live with it" what I am really saying is stop fighting it, it is a waste of time and energy. There are many devices and other non-painkiller things you can try but they are rarely effective for anyone for any length of time, particularly chronic sufferers. The nub of chronic pain is so often exacerbated by our reaction to the pain in the first place, time is better spent reducing stimulus and gaining acceptance. This will in turn reduce stimulus and hopefully greaten your ability to resist resorting to pain killers, which again should decrease your pain pathways. People never like being advised to learn to live with it, doesn't mean its not true, but it also doesn't mean you stop being open to treatments its just you don't hold out for them.

[designer111 in reply to Cat00]

Yes I agree with Cat. I have only just learned recently that I don;t get rebound headaches where they keep coming back every 24 hours, but it is indeed the same migraine attack. Its just that if you take meds, they supress the pain, do not abort it entirely. This in itself is hard work! I am forever trying to chase my headache and stop it.

[Karinbircher]

My neurologist (who is a headache specialist) thinks I have chronic migraine and rebound headaches caused by triptans. He has explained that there is other support that can be provided. I had two nerve blocking injections at the back of my neck which helped and there are other injections available. Which I will try in the future. There are pieces of equipment (I haven’t tried them yet) which I think are called Cefaly (not on NHS) and I think the other one is gammaCore. I have been advised not to have any caffeine as that can be a trigger too. I tried Botox - it helped initially but the effect wore off in time. I am hoping over time to be supported off the triptans.

[clairefyfe in reply to Karinbircher]

Botox, if anything has made mine worse. I'd give anything to not have to take meds every day. I'm always hoping the next treatment will work. Pinned my hopes on the botox but it wasn't to be. Hope yours clear up x

[Xandi123]

Hello,

I suffer with chronic migraines and something called migraine variant balance disorder. I'm taking nortriptyline and just started piz. I found the nort helped loads. Also when a triptan doesn't work I find a hot bath and going under with just my nose poking out. Also I take migraleve. I'm sure I must rattle as I walk 😁. Also I was reading about migraines you get around you period and mefanamic acid helps to stop them. X

[clairefyfe in reply to Xandi123]

Oh lord. Poor you.

A bath would be a good shout but I only have a shower

I had a hysterectomy 10 years ago so can't even put mine down to hormones. Arghhhh. Take care x

[Cat00 in reply to clairefyfe]

Hysterectomys have been shown to have no effect on migraine reduction even when sex hormones have been considered to be the problem, it is a studied phenomenon.

[Wolfiesmom08]

I take fovratriptan for migraines and it works better for me bc it has a longer half life than the other triptans. My migraines usually last 3-4 days so the other triptans would wear off too soon and the migraine would reappear worse than before and extend my headache to a whole week. I take magnesium very night and coQ10, and B vitamins to prevent. Similar to Migraleif.

I just started on a daily preventative called Namemda here in the US and it’s only helping a bit.

[mmaya in reply to Wolfiesmom08]

Same here after 30 years of suffering. I don't even take any preventive meds anymore, just the same natural supplements you mentioned and botox on the head and neck every 3 months.

The only triptan that works straight away for me is the imigran, anything else doesn't work.

I use triptans maybe twice a month.

I see a lot of talking abt triptans causing rebound - they do not cause rebound. Codeine & morphine do, the triptans ARE not painkillers, they regulate the serotine in your brain. They are dangerous because they affect your heart but not because they cause rebound, they don't.

I hope this helps

[clairefyfe in reply to mmaya]

Thank you for replying and I'm sorry you suffer too. I'm pleased you mentioned that it's codiene that causes the rebound headaches because that's what I thought and was led to believe by my consultant.

Had a really good week, so feeling more positive for now. I'm now taking magnesium and fever few daily as well as the botox, so fingers crossed. Thanks again x

[mmaya in reply to clairefyfe]

The magnesium is a Godsend BUT not enough, the combination of B complex magnesium and co enzyme q10 is what works for the migraines.

If the triptans work for you, it means you have a serotin imbalance, that is the reason why the triptans don't work for everyone.

I am not a neurologist but I've been on every single treatment that exists and I do know a lot about migraines bcse I am very bad.

I have mine under control, listen to all recommendations, try everything, one day you will find something that works for you.

Stay away from topamax, it fries your brain completely

Hope you find peace soon

[clairefyfe]

Never heard of fovratriptan, must see if its available here. I'd try anything. Thanks for your reply. X

[JumpJiving]

My migraines are nothing like the frequency of yours, so completely different ballpark. I took amitriptyline hydrochloride for quite a while. TBH, I don't know if it helped - I know the trigger for my migraines and can usually avoid it, so did the amitriptyline reduce the frequency - it's hard to know. However, a blood test that I had done privately showed an issue with my liver (elevated GGT level - significantly outside reference range). After some investigation (weaning off amitriptyline and then going back on it briefly, and repeating blood tests throughout), I confirmed as much as is possible that the amitriptyline was causing the GGT issue. The GP would never have spotted that, so it was lucky that the test I had done for a different reason highlighted it. Having come off the amitriptyline, the GP prescribed propranolol (a beta blocker) to try to prevent the migraines. The side effects from that were too much to have to put up with, so I weaned myself off that too. Rather than try the next sledgehammer drug on the GP's list (she said the next one has even more side effects), I'm trying something else - supplementing my magnesium level. Magnesium citrate is the thing that is suggested, but even at 100mg per day that messed with my insides, so I've switched to a magnesium complex (citrate, taurate and bisglycinate), with each in a lower dose. The taurate and bisglycinate should hopefully help with fatigue and sleep issues. It's early days though - supposedly it takes about 3 months before you know whether it makes a difference. TBH, I don't know whether this will help my infrequent migraines. I have no idea whether it would be likely to help with your much more significant migraines. One to bear in mind though if nothing else works.

[clairefyfe in reply to JumpJiving]

Thanks, I've heard about magnesium but never taken it.....will have a look in to that. Hopefully that work for you. x

[LarryDahlka]

I have daily migraines and take Triptans daily. I currently take Maxalt, Amerge and Zomeg and have taken others in the past, most triptans work for me,with maxalt ,which melt in your mouth, being my choice when away from water. I stop everything at times,but it doesn't stop migraines. Ive tried the new injectables, botox, accupuncture, oxygen, daith piercing, Cefaly, capacian creme and 60 or seventy different medications, Im not going to completely suffer migraines as long as i can get Triptans and keep trying things till something works. I will suffer with not taking pills at times as a test,but Im not going to keep suffering.

[clairefyfe in reply to LarryDahlka]

You sound very similar to me, acupuncture didn't work for other ailments i had, so wouldn't hold out for relief for my migraines. I've tried umpteen triptans and they all work for a few months and then it's as if my body gets used to them and stops working. Botox hasn't worked either. Daith was poo-pooed by my consultant and i'd happily do it if i knew it would help. I have my tragus pierced, so i'm not adverse to holes in my ears. And i totally agree, when i'm in pain, i will suffer for a time but in this day and age, surely there is something that can help. Its really debilitating and depressing at times. Thanks for the reply x

[babs1234 in reply to clairefyfe]

I had the daith piercing 3 years ago. It helped me with severity and frequency

[Onthemove1971]

Thanks for your post. I have suffered for almost 30 years with migraines and like you thought I had tried everything. So here is what I recommend:

The Podcast - Heads Up. Download an App that plays podcast ( Podcast reader or Castbox). Then search h for the Podcast. They are migraine specialist who record many topics that have really helped me a lot.

World Migraine Summit- this is a website by 2 people who both suffer from migraines and they have taped interviews of world renoun specialists who will answer many of your questions.

I was taking so many Triptans and Over the Counter medications daily that I was giving myself rebound headaces. So I went cold turkey and I am on week 5 of not 1 triptan and I rarely get headaces, when I do I use Alleve it is less than 2 times a week.

I have realized that my neck and back pain is causing my pain. Which causes my migraines.

So here is what has worked for me:

Magnesium glycinate ( there are 5 or more types)

Feverfew and B12.

Ice...ice..ice.. I make sure I sleep well and snack before going to sleep.

I more recently started drinking Hot peppermint tea and keep peppermint candy with me at all times. I also eat more almonds when I need a snack.

When I am exposed to perfume I roll peppermint oil on my hand and smell it.

Life was hard the first few days and week, now I only get a tinge and treat it quickly.

Now that I am pain reduced I will start to exercise more ( I have a yoga class 1x week) but need more.

I also have an injectable triptan so when it gets bad I use that.

Everyone I tell about magnesium ( I take it 3x a day by lunch time I take another) it takes about 3 months before it will make them less painful, then the number you have will reduce.

All of this has really changed my life, I hope these tips helps you.

Good luck!!

[babs1234 in reply to Onthemove1971]

The world summit recommends magnesium chelated. That’s what I take. Then someone says it magnesium citrate you should take. So many conflicting advice x

[Onthemove1971 in reply to babs1234]

I take magnesium glycinate, this the the second type. I also take 100mg per pill, but I take it 3x a day. AM, lunch ( I feel it wear off but when I take it the tinges stop) then also at bed. I might add one more dose around 5pm. It is recommended up to 500mg. It has changed my life a lot.

If you take it for over 3 months and you don't get results then increase the times. If it is not reducing the migraines the change the type..

Here is a good article talking about types and side effects:

medicalnewstoday.com/articl...

I really think it will help,

Good luck.

[mmaya in reply to babs1234]

@babs1234 its conflicting because migraines are usually a symptom and not a disease on itself. From 100 people complaining of migraines, you'll find maybe 10 actually have migraines, the rest also have migraines but they are caused by something else other than brain related.

Overuse of painkillers being number one, stress and lack of sleep, junk food, food allergies, domestic violence, dehydration (!) ....for any migraines caused by something like this, you'll need to identify what's causing it and stop it.

The small percentage that have tried everything and nothing works, they usually resume to natural supplement s and they get rid of the migraines.

It doesn't matter which magnesium you take, they all have a calming effect, that's what the magnesium is supposed to do - take the edge away.

[clairefyfe]

Thank you. You give me hope. Definitely going to try magnesium. And will look for the app and podcasts. X

[Adriana5631 in reply to clairefyfe]

Hi there, you should also add 400mg of Vit B2 (Riboflavin) daily as well as Vit B12 daily for migraines. It’s well documented.

[mmaya in reply to Adriana5631]

Adriana, after doing 3 years of the doses you're describing ( which by the way is correct) I found out it is not the best approach. Its better to supplent on ALL B complex rather than one or another because when you are over supplementing 12 and 2 , the b3 and b5 will be imbalanced and it fires back. I am doing b complex instead and I stop for 1 week every 2 months.

This is particularly efficient on females aged BTW 40 and 55 as it controls female hormones, I hope this helps.

[Adriana5631 in reply to mmaya]

Thanks a mill for that bit of advice, Mmaya. Will stick to the B-complex instead and remember to stop for a week every 2 months. Many thanks!

[AlfaBear]

Hi there,

You are not alone in regards to suffering like this. I have up to five (Chronic daily migraines) per day, along with other diagnoses. Some may think you can only have one, but mine are quite complex.

I am unable to prevent most of them, but I have the Sumitriptan 6mg injections, which can be of some use. If I catch it early, I may be lucky. It worked well for 1-2 years.

I don't know what your diagnosis is, and I'm not a doctor, so I can only give you advice based on my own personal experience.

I have tried nearly every medication available to me, but in some circumstances it worked, but then I have a high tolerance for medication too. Candestartan worked for a while, pizotifen was useless to me.

I too am only allowed up to 10 prevention per month, whether that be naproxen, paracetamol or Sumitriptan etc. Rebound and Medication Overuse Headache would kick in, which is even worse.

I find sleeping through the day, or after work to rest my head helps. I have promethezine to help me relax, but again it isn't there for a headache. I have oxygen at home, and that is quite useful - at times.

Occipital Nerve blocks and botox have been tried, to no avail. The nerve blocks worked for a short period only.

There are other medications such as Venlaflexine, Dolsuipen (used for depression but side effects help migraines), Sodium Valporate, Carbamazepine, Fioricet and more. It takes a while to get the right combination, but this would be down to the specialists to discuss it with you.

My one trigger is stress, nothing else and yet I still get them. I would certainly take the time to discuss this in detail with the doctors.

I hear that Dolovent is pretty good on some people, but it's expensive (approx £30-40) per month. This is something you can buy yourself, and it is for headaches. I would ensure you're taking vitamin B12, preferably the activated version.

Aspirin at 900mg can be of use, but you would need to ensure that you're not on blood thinners. One thing is for sure, don't take codeine.

One final note, your headaches can be classed as a disability if you're off work a lot. Sections 6, 15 & 19 of the Equality Act covers chronic migraines.

Hope that helps

[clairefyfe in reply to AlfaBear]

Thank you so much for your reply, I am grateful to you and everyone else who has taken to time to talk to me.

I'm actually off work today with an acute flare. I'm lucky that my time off work has been limited until now.

I'm pleased you understand the many headaches a day. I know when one has finished and then another starts even though they may only be hours apart.

I'm almost certain my trigger is stress, worry, anxiety or anything that is niggling away at me. I've tried umpteen anti depressants and took beta blockers for twenty years. But I'll take your advice and speak to the consultant again about that.

I was warned off codeine years ago but I must admit to my detriment I will on occasion take it in the form or solpadiene soluble because I know it will if nothing else, numb the pain. But I do not take it regularly by any stretch of the imagination.

I've never taken aspirin but willing to try it. I've ordered magnesium to start taking and even bought feverfew to try.

Dolovent? I must look that up. My husband and daughter are in the pharmaceutical industry, handy when it comes to finding out about things. I have the pharmacist at hand 😉.

I've never been prescribed a triptan injection but could ask. I did have the nasal spray but eventually they stopped working too.

You've got to laugh when you think of all the combinations of meds you've tried. I should be super woman by now.

Will note all the drugs you've mentioned and keep them to hand for my next visit in January.

Thanks again and take care x

[babs1234 in reply to clairefyfe]

My headache specialist told me to give codeine a wide birth. Try Anadin a extra occasionally

[clairefyfe in reply to babs1234]

I stay clear of codiene based meds and only very occasionally (twice a year or so) will use it. I'm aware of the rebound headaches that codiene/morphine cause.

[Onthemove1971 in reply to AlfaBear]

Are you taking magnesium? It has really helped me and many people who suffer a lot.

[clairefyfe in reply to Onthemove1971]

Just recently, yes

[AlfaBear]

Hi Claire,

You have been fortunate that your time off work has been limited. I am usually in bed 3/4 days out of the week, due to a stinker. I usually have the silent migraine (all the aura's) first, then without notice, bang - it goes off like a hand grenade.

My headaches take two paths. One is like a castle, so you have the build up (wall) then the flat pain, it then reduces, to return again. They differ in lengths of time. The other is like peaks and troughs, whereby you have the spike, it may last 15 minutes to an hour, then back down again. This is usually the cluster headaches. Unfortunately, I also have SUNCT and the odd hemiplegic migraine. So in total that's 4 types, 3 diagnosed.

SUNCT is just as awful as cluster headaches, although they are like the barrel of a revolver. Bang up to one to two minutes of pain, reload, bang. It's like a bolt of lightning going across the right side. My clusters are on the left, as with my hemiplegic ones.

I can only suggest ideas, which may have helped me. I am unable to use the Beta because of Asthma, but Candestartan was helpful for a brief moment, although this is a Statin.

It's great you have a pharmacist at hand, I have the BNF app on my phone to research medications I can use, or people i work with. It just helps to have a better understanding of what you're taking.

Dolovant is something you can buy online from Amazon etc, but get advice is all I would suggest. I believe it contains magnesium. I went the magnesium route too, but to no avail.

Triptans are good, if they are not over used,but doctors don't like handing the injection ones, as they are so expensive. It's like an EpiPen, you press the button, and it shoots the needle into the muscle in leg or arm.

I think we're all guilty of taking something a little stronger. I have tramadol if needed, or amitriptyline.

The NMC were so helpful with me, and went beyond that on occasion. If they suggested something, then the doc usually goes with that plan.

Unfortunately for me, next step is surgery. It's around a 2 year wait, but you can only be put on it once you've ticked all the boxes which the NHS deem necessary. It's so frustrating as life is essentially on hold until that happens.

Take care,

Jon

[clairefyfe]

Oh my goodness Jon.

I hope you get a cure or relief soon.

After a bad episode yesterday, and a whole 24hours pain free I'm feeling much more positive today.

I have purchased magnesium and feverfew so pin my hope on them for the next few weeks. Back at the consultant at the beginning of January, so will be asking lots more questions this time.

Have you had botox? Just wondering if it has a cumulative affect? And whether I should have the 2nd round.

Thanks for replying to my question

[babs1234]

It’s great these docs saying only take pain killers twice a week when they’re not suffering every damn day

[Hidden]

I really empathise. i am currently on day 15 and literally want to bash my head against a wall in desperation. However, sorry not to provide the research but there has been excellent research on ginger, try up to a teaspoon a day in whatever way you can take it, or make fresh ginger tea. Meant to be as effective as sumatriptan. i am taking proper research papers here not some crackpot who has a bit of a headache! Also gut bacteria are really implicated so maybe a good probiotic might help. Again, excellent research done on this but feel too crappy to find the paper. Apologies but again it is really good, double blind stuff. xx

[Hidden in reply to Hidden]

Ps there has also been good research of wild swimming and cold showers. Not cold the whole time. The idea is to shower comfortably, then gradually make it cooler and cooler. Start with only 30 seconds and increase little by little. Not head though, only from the neck down to cool the core apparently. Had forgotten this one, must start again. It is not so bad once you get used to it I promise!

[Larai]

HI Clairefyfe, I pray you get the help you need and a drug that works for you, because we are All different!~I have been a migraine sufferer since I was 15..(I've read that migraines lessen in frequency as we get older, but mine seem to have intensified since I turned 60) but it's only been since my hubby passed 7 years ago, that I started actually seeing "aural" lights & color before the pain hits...but this last couple months It feels as though I've had back to back migraines for just over a month.. I Hate taking drugs.. I have a few life sustaining drugs, but have been mostly dependent on a regular aspirin that IF I catch it at the aural stage I can forstall the severe badness.. Mine seem to start on the left side of the head.. I am also a breast cancer survivor, and my oncologist had me do an MRI to make sure my cancer didn't migrate to my brain. What the MRI shows is that I have a Bunch of white spots on my brain.. according to the radiologist signifies that I am a chronic migraine sufferer.. I also have a "Veinous Anomaly" in the frontal lobe, supposedly something I was born with.. those white spots could also signify stroke, or MS.. Apparently now I am making too many red blood cells.. so the doc is concerned about that.. Honestly, it's difficult to figure out where one kind of pain ends and the other begins they all seem to be a part of one big hole in my health.. Kinda scary!..