Lifelong (almost) migraines

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Lifelong (almost) migraines

Post by Nekoha on Tue Feb 14, 2012 12:03 am

I am an American expat living in Tokyo. So glad I found a migraine forum!
I will try to be brief! Laughing I was diagnosed with migraines at a young age - 4 years old. I had been having migraines for a few years at that point, according to my mom, but they didn't know what it was until I was old enough to talk. When I was a baby, I banged my head on the floor, crib, etc, vomited, screamed bloody murder - pretty much the same as now, actually! Razz When I was about 3-4, I told my mom my head hurt on one side, light hurt my eyes, and smells bothered me. My pediatrician apparently diagnosed migraines (but this is just a story I have from my mom...) Back then, my migraines were attributed to 1)family history and 2)milk allergy. If I ate ANYTHING with milk or any milk byproduct, I got a vomiting migraine within 24 hours. If I touched anything with milk or any milk byproduct, I broke out in hives.
Fast forward 30 years. I have been on EVERY migraine preventative, migraine abortive, and migraine homeopathic/alternative there is, with little or no success. I outgrew the milk allergy at 12, but I am still very careful of milk, especially aged cheeses. As a child, my parents were anti-medication, so I tried feverfew, white willow bark, all sorts of migraine homeopathic remedies. Mostly, I suffered at least 1 migraine a week for about 6 hours with hot foot bath, cold neck rag, and peppermint tea. <--- How I wish I could go back to those days!
In my teens, I started the prophylactic and abortive medication route. Fioricet (butalbital, caffeine, acetominophen) works the best for me, as I am severely allergic to all triptans and ergotamine. While living the in US, I took Topamax with mediocre results after trying Lamictal, Neurontin, several beta blockers, and several others whose names I have forgotten. Here in Japan I have been on Migsis, also with mediocre results. I have also tried acupuncture, acupressure, shiatsu massage, and biofeedback with very limited response. Please note that I didn't try these things ONCE, I tried for at least 3 months.
Well, "normal" for me on prophylactics is average 3 migraines/month. In January of 2011, I began having about 10-12 migraines/month. My neurologist discovered that Topamax and Lamictal had just become available in Japan, so he switched me to Topamax. There was absolutely no reduction in migraine frequency or intensity. I was switched to Lamictal, with the result that I had a 2 month long migraine of varying agony. I lost my job, naturally! (Two months of either not going in at all or going in for an hour, then vomiting and leaving will cause you to get fired.)
MRI done in September of 2011 - perfectly normal. I was referred to a neurosurgeon who knew more about migraines. He said that I was abusing my pain medication, so I completely stopped taking it for one month. Talk about agony! But I made it the whole month! Then the neurosurgeon decided to get to the root of the problem. His first guess was chronic dehydration. This seems to have some merit, as after getting an i.v. of saline, I didn't have a migraine for 4 days. But I can't do that every day or even every week. I drink TONS of water, but for some reason that doesn't work. I drink oral rehydration solution, but haven't noticed any improvement.
At this point, my neurosurgeon can't see me again until April. I have at least 3 migraines a week, lasting between 4 hours and 2 days (depends on how quickly I give into the urge to take Fioricet). I keep a migraine diary and a food diary, but can't see any correlations. My life is almost completely paused - I can't make plans with people, because most of the time I have to cancel. Fortunately, my husband and his family are pretty understanding and helpful. I go to psychotherapy once a week as long as I don't have too bad of a migraine. I do think I am taking too much Fioricet again, although I don't take it until I absolutely can NOT stand the pain another second. I've tried to ward off the migraines with Tylenol as soon as I feel pain, but that was when I really started abusing meds, so I don't want to go that route again.
I know that I am certainly not the only migraine sufferer, nor the worst! But at this point, thoughts of just ending it are really strong. I really need the help of a supportive community of fellow migraineurs. Any recommendations welcome, but please keep in mind that a LOT of therapies are simply not available in Japan.
Family history: Paternal grandmother, mother, father, brother all suffer(ed) migraines, but to a lesser extent.
PS... I am going to a retreat for meditation in May or June. I am also going to try yoga, but not sure the best way to go about that. Do I need to attend a class or can I use a video and just do basics?
Sorry... this was NOT brief! Embarassed

Nekoha

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Re: Lifelong (almost) migraines

Post by Tee on Tue Feb 14, 2012 8:06 am

Hello there are welcome........... so sorry to read you have had these for so long and have now gone chronic............

What was happening in Jan 2011 - did anything trigger the chronic start?

What type of migraine do you have?

Taking too much Fioricet, is not going to help - but you know that - too much and you will go into rebound....

I have been chronic now for 6 years and have to say meditation and Beuyok breathing help loads so the retreat sounds wonderful....... re the yoga I would say a small class would be good as you will be guided and should be able to relax more.

I wish I had the answer - but I can only go on experience and I manage it via small changes of avoiding triggers - ie no chemicals in the house, online shopping - do you know what your trigger are?

Tee x


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Re: Lifelong (almost) migraines

Post by Nekoha on Tue Feb 14, 2012 5:19 pm

Hi Tee,
Thanks so much for the reply!
We haven't been able to figure out what happened in January last year to trigger the chronic migraines. The only guess we have is that maybe it has been building up for a while?
I have classical migraines - no aura. Until I was in my late teens, all of my migraines were in the evening/night. We figure that is due to childhood abuse I suffered at night. But now I get migraines any time, all the time.
As for triggers... just about anything can be a trigger. It is really frustrating, because I seem to accumulate triggers. So, I can eat cheese if I am well-rested and not feeling stressed and I will get no migraine. But if I eat cheese after a bad night when I am also feeling stress, I will always get a migraine. Figuring out the "recipe" for migraines is such a long, grueling process! One sure trigger is too much TV or computer. I have a very strict regimen usually, but now that I am home all the time I sometimes go over without noticing until my eye starts screaming. (All of my migraines involve the optic nerve, and the first sign of a migraine is when one of my eyes starts killing me and the vision goes a bit blurry - then the other symptoms start.) Yes, chemicals are a big trigger for me, too! Anything that smells chemically will give me a migraine. The only housework I can do right now without triggering a migraine is laundry, cooking, and cleaning the dishes. Japan is not big on unscented cleaners, so I have to buy imported (AKA expensive) stuff. Fortunately, my husband is really kind and has become more and more understanding as this long year has gone on!
One question I have that maybe you or someone else can answer. Every doctor I have been to here in Japan has told me that pregnancy is a panacea for migraines. "All my patients with migraines stopped having migraines when they were pregnant!" My migraines are not linked to hormones in any way, so I don't see how pregnancy would help. Has anyone had the experience of a miraculous cure of your migraines during pregnancy?
Carla

Nekoha

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Re: Lifelong (almost) migraines

Post by Tee on Wed Feb 15, 2012 6:08 am

Hello

Yes, is the simple answer - I was migraine free while pregnant - it sone reason I have 4 kids lol _ HOWEVER not everyone is the same and I do know of people whom get worse when pregnant and some like myslef who went chronic following a birth............ the one big thing is that migraine is not a one shoe fits all illness.....

Triggers are a nightmare to work out............. So I do feel for you... re the chemical stuff can you get Method stuff out there? There is a long thread on here re chemicals and loads of helpful links to website - not sure if that will be of any help? I now do clean, but we use a lot of vingear and Bi carb of soda, fresh lemon etc........ we are chemical free know........ hubby has even binned his aftershave - bless him Smile

One thing that did come to mind from your post is you mentioned your optic nerve - Have you ever had a GONB (Greater Optical Nerve Block) Its an injection given in the back of the neck?

Tee

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Re: Lifelong (almost) migraines

Post by Nekoha on Wed Feb 15, 2012 7:32 pm

Tee,
I have asked my neurologist and neurosurgeon about 50 times to give me a GONB! Actually, before I lost my job, that is what I was insisting on, because I thought it would probably save my job. Unfortunately, I have met nothing but resistance from every doctor I have consulted. Either they refuse outright or tell me it is not something done for migraine patients, etc. My neurosurgeon decided to try to find the root cause of my migraines instead of just blocking the pain, since by the time I saw him I had already lost my job. It is really frustrating, as I have heard they don't always work and/or don't completely work. I don't see the harm in getting one and seeing if that will let me take less medication, at least! But apparently it is not covered by insurance in Japan for migraines, and doctors simply won't do it, even if I pay 100% of the cost. Sad
Thanks for the heads up about the thread on cleaning! My husband will be grateful! I have never heard of Method, but I can try to see if any of the import stores or websites carry it. I do know that Comet cleanser doesn't bother me TOO much - I can at least clean the shower every once in a while, but I need something that doesn't bother me AT ALL!
I do wish that migraines were a little more one-shoe-fits-all! It is so frustrating never to know if something will cause a migraine.

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Re: Lifelong (almost) migraines

Post by Tee on Thu Feb 16, 2012 2:40 am

Oh bless that is so frustrating - a GONB is standard practice here for chronic migraine - as you say it is hit and miss - but some get complete relief from it........... maybe your doc could contact other docs?? Their is a Proff Goadsby now in the USA that gives GONB all the time. Botox is the other thing I would advocate.

I will try and find that chemical link for you Smile

Method stuff is good - but I would avoid the mint and methol scents - They still effect me - the fruit and herbs ones are much better Smile

Fairy washing powder is the only one I can use re washing.

But I now use white vinegar and water on windows and kitchen units. And Bi Carb on metal works a treat Smile

The only thing I am still struggling with is a good toilet cleaner, as we live in a hard water area and so get a lot of lime scale - but that is now a Hubby job Smile

Make up and toiletery are another thing you may want to look at - I am now useing a lot of Green People stuff. http://www.greenpeople.co.uk/?gclid=CJDhyJWooK4CFcEntAodzxsf3Q

x

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Re: Lifelong (almost) migraines

Post by Tee on Thu Feb 16, 2012 2:40 am


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Re: Lifelong (almost) migraines

Post by Tee on Thu Feb 16, 2012 2:42 am


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Re: Lifelong (almost) migraines

Post by Nekoha on Thu Feb 16, 2012 8:27 pm

Wow! This is some very interesting stuff! I am very curious as to what chemicals are in my laundry detergent, etc. Japan is notorious for being strict about the chemicals they allow in all cleaners - to the point where a lot of the stuff that is sold in stores does NOTHING to actually clean! LOL. They don't sell white vinegar or straight bleach here in stores. I have to go to specialty import shops to get anything that actually cleans the bathroom. I wonder what is worse - short term contact with harsh chemicals (imported American cleansers) or long term contact with weak chemicals (takes me more than an hour to scrub the sink and shower with Japanese cleansers)?
One thing I love about Japan is how fresh everything is! I don't use frozen or canned food here, and even dried food is pretty rare in my kitchen. Lots of seaweed, so lots of iodine. It's so funny, but when I travel back to the US, I am always shocked at how "chemically" the food tastes!!! I can't eat anything processed anymore. Used to adore Pasta-Roni, Spaghetti-O's, canned soup. Now they taste like a mouthful of chemicals and I am horrified at what I put into my body for years! I am sure that there are still lots of things I can improve on, but I am proud of the improvement I have already done!!
I also wonder about how much damage I have done to my body by working in a laboratory for so long. I always used the best technique possible when handling chemicals, but my coworkers took many shortcuts and I often had to clean up spilled chemicals after they were done. I guess some people can get away with such stuff, but I am beginning to think I am a sensitive person when it comes to chemicals. Makes me sad to think that I might never be able to return to laboratory work! But I would be much worse off if I just let my health go down the drain!

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Re: Lifelong (almost) migraines

Post by Kala on Thu Feb 16, 2012 10:02 pm

Just to let you both know a GONB is a greater occipital nerve block, the occipital nerve being in the back of the head, whereas the optic nerve is the one found in the eye.
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Re: Lifelong (almost) migraines

Post by Tee on Thu Apr 05, 2012 1:07 am

Thanks Kala x

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