Any Chronic Migrane Sufferers here?

[AndOne]

Hey ya'll

I'm just looking for some support here. My wife is a chronic migrane sufferer and was admitted into the hospital on Christmas Day for swelling of the brain - caused by a migrane that had been steady for about a month. She had been in and out of the ER for at least a dozen times in a month and they finally admitted her when she exhibited stroke like symptoms - numbness in the arms, face, and fingers. They put her on an intraveinous anti-inflamatory steroid to stop the swelling which seemed to do the trick.

I got her out of the hospital the Friday before New Years - but she went back to the ER today because it just got to be too painfull for her again. No rescure meds seem to work - you name it - she has probably tried it - imitrex and ambusol for example. She is also on the pain inhibitor meds topamax and Gabapentin. seems like the heavy narcotics are the only thinkg that nock them down but once they wear off she is back in pain. The stuff never completely takes the pain away either.

I'm just looking to see if anyone has dealt with them to this extreme before. My wife has had the headaches since before we were married (17 years ago) but she has always been able to keep them under control with meds until now. I'd like to know if anyone else has had to deal with this and had any success.

Thanks.

 

[LibertyChic]

Please forgive me for stating what may be the obvious, but has she had an MRI to check for other brain problems (eg, tumors and the like)?

I'm sorry your wife is suffering so terribly. I have chronic migraines, but not that chronic. I do hope you are able to find some answers for her.

 

[livingword26]

I have to agree with the MRI. She also needs to see a Neurologist if she hasn't. Most importantly she needs intercessory prayer.

 

[s_gunter]

As a migraine sufferer myself, all I can offer is this:

But, she should also be checked for other things too. Me personally, I've been hooked up to so many machines, I've forgotten what all the tests were. They came up with nothing, other than I just get those terrible headaches called migraines.

 

[vespasia]

This sounds similar to the situation of 'stasis migraine'. Its horrible to be in as the pain never stops no matter what you do. Three years ago I spent from early december untill the middle of January unable to do anything, eat or even cry. All I wanted was someone to shoot me dead and stop the pain.
In my case the drug treatment used was morphine and enough drugs to sedate me out cold for three days. Getting trapped with not sleeping from pain made it harder to break the 'pain cycle'. I was also assesed for menegitisis and had a full check up run by the neurologist to asses for any other hidden underlying causes.
Turned out it in my case it was all the neighbours twinkling christmas lights that caused it (EEG)! I now wear specialist prescription leneses which reduce the problem considerably and can use the health and safety acts/ disability descrimination act to avoid working in 'hazerdous' envioronments.
In the Uk any migraine headache that lasts longer than 72 hours is sent for assesment.
Severe headaches are always referred to A&E if they are 'unusual' to the pattern normally experianced.

One can take one type of preventative for a number of years and then need to change for another.
There are a number of differant 5HT atagonists on the market now and what suits one person does not suit another. Its trial and error to find the right relieving drug for each person. I have had to change the ones I use over time.
Some are available as oral 'melts' and a couple are now available as nasal sparys. Sumitriptan (imigran) is the only one I know of that is available as auto-injector.

It is worth going back to the neurologist with a full migraine diary. It may be this is another form of 'headache' other than migraine. Their are poor folk out there who suffer more than one type of 'headache' although cluster headaches desrve the title 'suicide headache'
I have severe photosenstive triggered migraine that mimics 'TIAs' and that can be scary.

It has taken over 20 years to get control thanks to a combeination of A&E, a team of specialist neurologists and an expert team at the regional eye hospital.

Another thing to watch out for is 'rebound headache' if a personis taking anelgesics almost every day for a priod of time the headache can over-run you. You take more pain relief and that in turn can be the cause of the headache from hell that no pain relief can touch.

And please push for scans to be done ASAP.

 

[AndOne]

Yea - she's had the full gambit of tests done - CAT, MRI, MRA, even a spinal tap - all negative. We were thinking that there might be a food trigger - but the EEG thing is an interesting prospect. Will be interesting to see if they taper off now that everyone is taking their lights down...

 

[Scandia]

mainly in the winter months for me. sun helps me.

 

[lavenderskies]

has she had allergy testing? My migraines get much worse with some foods. maybe keep a food diary and look for a pattern. I am praying

 

[miniaturepanda]

I can't believe there's someone out there like me. I knew there had to be! I have had a migraine now for two years... or more? I too have tried it all in terms of medication and it has drained my bank account. Narcotics are the only thing that even touches the pain for me as well. I've been on Hydromorphone for more than a year and I only just turned 24. We just kept bumping the dose because it was no longer effective. And I was recently switched to Oxycocet. I also battle coccydynia (chronic tail bone pain) and that's that only thing the doctors can link the migraines to. If nothing else, I empathize and am here.

 

[AndOne]

Mini -

I have had my wife hooked in with the Jefferson Headache Clinic now since I made the original post a couple of years ago. I highly recommend you find a Doctor who has some experience in Migraines.

One thing we have learned through Jefferson - ALL NARCOTICS ARE BAD for Chronic Migrainers. It wasn't until my wife could stay away from them until she saw any real improvement. The Narcotics give you the quick fix to take the pain away - but every time you go off of them you will get what is called a "rebound" headache and will cause the migraine to come back - and is in my wife's case (and it looks like yours) it will stay and only grow worse over time. My wife was hospitalized and put on Dilodin for a week straight - worst thing that could have happened to her. When Jefferson got a hold of her they had to put her back in for 5 weeks to repair the damage that was done.

They finally have gotten her on some stuff that seems to really be helping her. If you want more info on our nightmare with migraines and perhaps some help and advice please PM me. Good luck - I'll be praying for you.

 

[Ladybug4Jesus]

I began suffering from some really severe migraines my freshman year in high school. The first bad one I had blinded me as I was walking down the hallway at school (that was a real treat). That one lasted for almost a week too.

Anyways, I soon did some research into migraines and found out what a lot of the triggers are. My worst ones are aspartame, skipping a meal, light, and heat. After I began eliminating these things, my migraines reduced in amount and severity. I barely get one a month any more, and maybe once a year will get one that lasts any more than a day. And they are never so severe that I can't function, like they used to be.

Just my 2 cents.

 

[kaykay9.0]

Mini -

I have had my wife hooked in with the Jefferson Headache Clinic now since I made the original post a couple of years ago. I highly recommend you find a Doctor who has some experience in Migraines.

One thing we have learned through Jefferson - ALL NARCOTICS ARE BAD for Chronic Migrainers. It wasn't until my wife could stay away from them until she saw any real improvement. The Narcotics give you the quick fix to take the pain away - but every time you go off of them you will get what is called a "rebound" headache and will cause the migraine to come back - and is in my wife's case (and it looks like yours) it will stay and only grow worse over time. My wife was hospitalized and put on Dilodin for a week straight - worst thing that could have happened to her. When Jefferson got a hold of her they had to put her back in for 5 weeks to repair the damage that was done.

They finally have gotten her on some stuff that seems to really be helping her. If you want more info on our nightmare with migraines and perhaps some help and advice please PM me. Good luck - I'll be praying for you.

Glad your wife is getting some help with this. I never had them this badly, but I did have them pretty frequently (about one every 7-10 days.) Imitirex worked on mine, but the thing that seemed to work the best was when I began seeing a chiropractor for my neck, it seemed to also cure my migraines. Now I only have a migraine, maybe once or twice a year as opposed to almost weekly before.

 

[manchambo]

I have certainly never had migraines nearly that bad. But I discovered something interesting when I started taking Lyrica for back pain--my migraines stopped completely. I see that your wife has tried gabapentin, which is related (Lyrica is the next generation, called pregabalin). Might be worth a try if she hasn't tried it yet.

 

[Mito]

I feel your pain, I've have migraines frequently (multiple times per week usually lasting a day or more with rare occasions of lasting months). however I am never without a headache nor have I been for 10 years. Pain meds do nothing, including morophine (they gave me the gambit last time in the hospital). Mine was finally diagnosed to be part of a disease I have. I've always had multiple health problems, just docs always zero'd in on my migraines and missed the rest. For whatever reason pain meds, and Migraine meds typically do nothing for me (something to do with my disease I beleive).

 

[AndOne]

I feel your pain, I've have migraines frequently (multiple times per week usually lasting a day or more with rare occasions of lasting months). however I am never without a headache nor have I been for 10 years. Pain meds do nothing, including morophine (they gave me the gambit last time in the hospital). Mine was finally diagnosed to be part of a disease I have. I've always had multiple health problems, just docs always zero'd in on my migraines and missed the rest. For whatever reason pain meds, and Migraine meds typically do nothing for me (something to do with my disease I beleive).

Sorry to hear you aren't getting any relief, Mito. Do you mind if I ask what your disease is that is contributing to your headaches?

 

[Mito]

mitochondrial myopathy. its a degenerative neruo-muscular disease. The cells of my body don't produce enough energy to feed themselves. It has various effects on all systems of the body. Biggest being my muscles, along with my migraines i deal with very bad muscle pain. My muscles are slowly wasting and I can barely walk at this point. MDA lists it as a type of Muscular distrophy. Its a rare disease most doctors never have heard of. I actually have to teach my docs about it lol.

 

[AndOne]

mitochondrial myopathy. its a degenerative neruo-muscular disease. The cells of my body don't produce enough energy to feed themselves. It has various effects on all systems of the body. Biggest being my muscles, along with my migraines i deal with very bad muscle pain. My muscles are slowly wasting and I can barely walk at this point. MDA lists it as a type of Muscular distrophy. Its a rare disease most doctors never have heard of. I actually have to teach my docs about it lol.

Thanks for the info - at one point in my wife's case I thought she might have had something similar going on. She was showing signs of MD symptoms - but ultimately the doctors kept saying the migraines can be bad enough to produce those types of symptoms. After numerous tests I tend to agree with them.

Again thanks for sharing - and I hope you feel better soon...

 

[hopefullady78]

I used to get terrible migraines to the point of having to be in bed for days with the curtains and blinds closed. I have found that skipping meals and certain foods are a trigger for me. So I have improved my eating habits and eliminated the foods that cause them. I still get migraines, but they have lessened in frequency and duration. When I do get the odd migraine, I take Excedrin Migraine and lie down for a while.