Intro + Advice on non-medicinal migraine treatment

Hi all,
I found this forum at just the right point in my life. I have been suffering from migraines since age 8. I am now 22, and I am getting a bit desperate with my current situation. It seems like my headaches are always changing, and once I feel like I have them figured out and manageable something happens and they spiral out of control again.

I'm taking topamax, 50mg in the morning/75mg at night. I've been on this for ~2 yrs, and it took some figuring out to find a dose that minimized side-effects while effectively controlling my headaches. (Before starting topamax, I was getting tension headaches + migraines multiple times a week, and not comfortable with the amount of OTC meds and triptans I was taking to control them.)
When I do get a migraine I take treximet, which usually works.

My current situation is this: almost daily headaches for the past 2 weeks; these turn into migraines if not treated immediately, or (I'm assuming) rebound to become the headache of the next day when I do treat them, and the cycle continues. I have used treximet, maxalt, and ibuprofen, to no avail. In the past month, I probably have had headache/migraine 80% of the days, though I didn't keep a diary.

I am frustrated because this is exactly what topamax is supposed to be preventing, and I do not want to increase my dose due to the unwanted side effects. My instinct is to go off of it altogether and try something different; it's not like my headaches could get any worse at this point. Also, I'm kind of just hating on all types of medicine and just wish I could be medicine free and headache free--is that so much to ask?!

Has anyone tried non-medicinal treatments with some sort of success? Though I just found this forum, it seems like everyone here is using some type of combo-drug treatment. My neurologist is no help--he just suggests more drugs, and doesn't get that I want to be drug-free. I've been so desperate I've even looked into surgery (though I know this isn't a practical option). I'm talking acupuncture, biofeedback, relaxation therapy. I read a thread on here about cognitive behavioral therapy and ruled that out already. I just don't want medicine or migraines to run my life.

If there are helpful threads out there, please point me in the right direction!
Thank you in advance, Melanie

hi and welcome!!

weve all been thru the mill trying t find meds that work.

firstly have you tried coming aoff all the meds?i see you write about the triptans and ibuprofen you used. you need to be sure theres no rebound headaches involved. some chronic migraine start after taking too many triptaans/painkillers and getting rebound.

also migrianes seem t change evry few yrs and then your meds do too.

one very important thing to dois keep a migriane diray, it helps he drs sooo much seeing when your bad heads are and how many meds you take.

have you been on the national migriane centre face book site or web page. they have loads of help and interactive advice enevn doing telephone appointments.

you can download their miriane diraies to fill and it shows what info the drs need recorded. you can get your questions answered by the neurologists there as well.

good luck.keep going. hugs!!

Hi Melanie,
First I want to welcome you to our forum.
As you've already observed we are all here for the same reason: we are all fighting the Monster, The Migraine.
Sadly no matter what treatemnt we have, our experiences can be rather similar to yours: at times we have periods when we think that our symptoms are getting better, then things become worse again.,and so it goes.

However, some of us, by experimenting with a variety of treatments, and combinations of treatments are lucky enough to have found a better ways of controlling tha pain which involevs taking less medication and works for us.

Of course we all dream of finding the treatemnt which involves no medication and their nasty s/e at all, but it only remains a dream. Sadly in the end we often have to accept that fact, and instead keep trying to find what works for each one of us, since we know from the other posters, that no person responds in the same way to any kind of treatment.
Unfortunatley most of these treatments still contains some form of medication, perhaps in a different form.

For example I have found a considerable relief from occipital nerve injection of steroid and lidocaine in the back, at the base of my head, which I can have every 3 month, and which can be followed by longer period with no pain at all, and no need for medication.
And when the pain returns it is much less severe then my previous M.

Many of us find that treatment extremely helpful, but it depend how experienced the Dr is, as the injection needs to be given ina very tiny precice spot, which some Drs can miss. I had the experince of this happening to me when a young, and less experinced Dr did just that. I immediately knew that the injection went into the wrong place, missing the nerve but tiny fraction, so this time I did not get as good a result. I think this is what happens in some cases, when people get discouraged.

Also something like Botox works well for some people for longer periods (up to 3 month). We are lucky here in my country that Botox has just been approved to be given to M sufferers under NHS, if you qualify, which means that it is free (which makes lots of difference, as I belive it is quite expensive).
My neuro already said that I qualify for it, so I might consider it if things get any worse.

BTW I could not take Topomax at all, I had the most terrifying s/e and had to stop it after only few days. But I am on Gabapentin (Neurontin) now and this also helps to reduce frequency and intensity of my h/a.

But I do not, and have never taken, the "heavy duty" piankillers. In UK the Drs are most reluctant (thank God) to prescribe any narcotic type medicines for M and I am personally glad, since I would hate to have to deal with all the serious s/e and problems that comes with them.

I know we would all love not to have to take any medicines, ever again. We hate them. But we need to function somehow, so each one of us tries to find our own way of coping.

I am sorry, that I have no better news to give you, Melanie after suffering a lifetime of M, but the good news is, that you will find much understanding and support here. I hope you stay with us.
Mini

PS Dawn is also giving you a plenty of good advice above.

Dawn,
In terms of coming off all meds: I am still taking the topamax, but have not taken triptans or ibuprofen for a 2 days, for fear of the rebound affect. I would like to go off the topamax too, but I need something else to replace this with. I just found out acupuncture is covered by my insurance, but I know this is not a long-term solution.

I am keeping a migraine diary now and will do so regularly, thank you for emphasizing this. I have not been to the national migraine center before, but I will check it out.

Mini,
The one thing my neurologist and I do agree on, is to avoid medicines with detrimental side effects. I also did mention botox to him and he was no so keen on that one (i think because it is expensive and does not last long). I have a friend who gets botox and she was only semi-satisfied, but was getting it as a last-resort option.

I am just getting nervous about this because I am starting grad school in a month and I know my life will be stressful & my schedule will be all over the place (2 well known triggers). The fact that my headaches are already out of control is not comforting.

Thank you for these things, I will look into them and consider switching to another medicine after going cold turkey with the ones I am using. I also think I am going to find another neurologist, the one I have is no good and I can tell he doesn't really care about my headaches, just giving me medicine.

Hi Melanie,
You are right that stress is a bad M trigger, but when it is unavoidable it might be usueful to read about some good relaxation techniques, eiter at the time when you become aware that you are getting stressed, or after the unavoidable period of stress.

There are many proven ways to relax. However. you need to try some different techniques to find one that works best for you.

You can use visualtision, breathing, listening to soothing music (or best all three combined), meditation even self-hypnosis - a technique which is not all that diffiuclt to learn.
Try the interent to read more about these techniques, they can be very useful indeed.

I find that selfhypnosis also helps me during M, when at times it allows to to distance myself from pain. Sometimes it works better, then at others.

I think you are right, you do need to change your neuro. You need someone on your side who understand sepcific issues of all aspects of M. Look for someone who specialises in M, because not all neuros do.

I forgot to mention in my previous post that there are two ways to break the prolonged re-bound cyckle, whenever you suspect it is happening. They both work well. One is a course of low dose oral prendisolone tablets over a period of 5 days the other is a course of injection of DHE45, but this is usually done as an inpatient in hospital, due to possible s/e.
I need to mention that prednisolone is a steroid, therefore it can only be used on rare occasions, due to the bad s/e if taken over longer period of time, or too often.

I had it DHE45 treatment in hospital myself few years ago, and it was a most marvellous feeling when suddently you are totally with no pain whatsoever after years and years of daily, constant pain, which was caused by taking a normal dose those ordinary OTC tablets.
At the time I was totally unaware of the re-bound effect. Now, like you I am and I also trying to be careful.

You can also try to do it yourself, when you stop taking any suspected medication like ibuprofen, tylenol, triptans, or any other piankiller but it takes longer and some people getn a lot of additional withdrawing pain.

Gabapentin BTW is from the same group as Topomax, but I can tolerate it reasonably well so I have been on it for a long time as a preventative.

Congratutalation on getting to grad school Melanie,and I hope that you will soon find some better way of coping with your pain, with less medication. It is defintely worth a try.

It is tough living with M, but most of us battle thorugh it, get our eduaction, raise families, even hold decent jobs (I did all that, now I am retired) so do not worry in advance. You will make it.
Good luck.
Mini

Hi Melanie,

I really applaud you for looking at alternative treatments rather than meds. I got to the stage where you're at sometime around 2007 and have been on a quest to reduce my migraines using the least amount of drugs possible ever since.

Speaking from experience, I have couple of warnings for you when it comes to lowering meds. First, I don't mean to scare you, but you say it can't worse and believe me, it can. Some of us have been stuck with daily migraines or almost daily migraines for years. For me, it stared with a few days in row here and there and then progressed to a week or two straight and at my worst I think I had about 28 in one month. That's when I stopped working and had to go on disability.

Again, I didn't say that scare you. But you have to be so careful when you are changing your meds. I would strongly advise that you do so gradually and under the close supervision of a supportive neurologist who specializes in migraines.

Also, with respect to lowering meds, I have also found that whenever I have tried to reintroduce a med after coming off it, it loses its effectiveness. So I have had to either switch to other meds or dramatically increase the dose of the med I was taking in the first place. Kind of counterproductive eh?

Having said all that, I do think it is worth trying minimize your medication use. And for some meds, the side effects are so awful that there really isn't any choice but stop taking them. That means researching alternative therapies such as those that have been mentioned and just never giving up. I found that no one thing is powerful enough to rid me of the migraines but by having a variety of health care providers involved in my care and a number of different alternatives to use when I get the migraines, I can reduce the severity.

For the record, here are some non-medicinal things that I have tried: tiger balm (use on face/neck when migraine first starts), chiro, myofascial release, visceral manipulation, MRI treatment, meditation, prayer, reiki, elimination diets, naturopathy, botox, nerve blocks, and supplements (magnesium, B12, feverfew, etc.). If you want more info on any of these, I'd be happy to share.

There are so many different treatments that can potentially help with migraines. It is just a matter of trying each one and seeing what works for you. I understand how scary migraines can be, but as long as you keep looking for solutions, they can't get the best of you.

Thank you for all the advice, it really has given me a lot to think about and even more to research. I found a new neuro and will be calling him tomorrow for an appt. With going to grad school, I will have to find another new one in the city where my school is, so I'm hesitant to change things too drastically right now. At least I can talk things out with the dr and get his opinion.
Ideally I would like to find an alternative treatment that I suspect works, then slowly reduce topamax and eventually end it while continuing the other treatment.

Cookie Monster: I will message you because I am very interested to hear about your experience with the treatments you listed.

I will keep this thread updated with my progress as I try different techniques for my migraines.
Thanks again, Melanie

Sorry I'm getting back to you so late, but life has interfered once again with my regularly scheduled life. Many of us have tried many of the non-medication routes for our pain. I've tried massage, heat and cold therapy, diet and lifestyle changes, and some have become regular parts of my life and most went away, since they didn't make a difference for me. I went off dairy, at the recommendation of my neuro, who would have loved it had I gone raw and vegan too. Sorry, every now and again I gotta have a burger. Dairy-free helped at that time, because I had a lot of sinus inflammation that was the root cause of the series of migraines I'd been suffering at that time. I now eat dairy, unless I've got a sinus infection, since it will keep me from reducing the inflammation behind my sinus-migraines.

I still get occasional migraines that send me to the doctor for toradol and phenegrin injections. I also have Maxalt, neurotin, skelaxin, aleve, zofran, and ice/heat packs for the ones that I can treat at home. I try to go non-medication when I'm able, but I also have nothing against meds when the other stuff doesn't do the trick.

For me, retraining into a new career, and starting a night job have helped. Glare and overly bright lights are huge triggers for me, so working a night schedule allows me to avoid much of the really bright daylight. If you can, finding and then reducing exposure to your triggers can help. Unfortunately, some people may not have triggers, or can't isolate them from everything else the migraine pain and symptoms create.

Trying things to get off the meds is never a bad idea, but be cautious. Dropping things too quickly can cause problems and could puts your migraines into a bad spell. Be sure to keep your doctor involved into why you want to get off the meds, and make sure you know how to get off them without causing major side effects. Just dropping the topamax you're on can cause seizures and you have to taper off it, similarly to how you tapered onto the dose you currently take. Also, some of the meds they may want you to try could be preventatives, which means that if you notice a reduction of migraines, and then you stop the preventative, you could end up worse off than you were before you started the med in the first place.

Just wanted to add that earlier this year the American Academy of Neurology updated their guidelines for migraine treatment and listed several complementary treatments. The article they published on complementary or alternative treatments is called - "Evidence-based guideline update: NSAIDs and Other Complementary Treatments for Episodic Migraine Prevention in Adults". I think you can find it at : http://www.neurology.org/content/78/17/1346.full

It sounds like the Topomax is not working for you any more. Your doctor may want to change the dosage or try something else.

I could not take any of the preventatives due to side effects. You might want to look into the natural supplements. I am taking 400 mg of magnesium and 5000 of vitamin D, along with 200 mg of progesterone which help a lot.

Grad school will be a challenge with migraines. You need to pace yourself and not take on too much at one time. You can get there if you don't push too hard and stress yourself out.

Good luck!

Thanks a lot guys, I've been looking around for awhile and there are some things I tried. The only things I tried so far are pain relievers. So What are the different kinds of migraine? If there is any?