status migrainosis

This is my first time in a forum like this and I don't quite know what I am doing, but I am pretty desperate at this point. I am 63 and have had migraines since I was 6 or so. It is familial, apparently plaguing in the women in my lineage. My migraines have gotten longer as I have aged, but I have managed to deal with them with the help of triptans, which get me through the work day. But I now am in my 19th day with a migraine that I simply cannot shake. Meanwhile, taking a maxalt every day seems like a particularly bad idea for the long-term, because the drug was not designed to be used on a daily basis. Has anyone else got any tricks for breaking out of an unending migraine?

are you taking a triptan everyday?? they will cause a rebound headache, get off all the meds for the pain and youll break the pain cycle. take care

Well, I take a maxalt most days at around 4:00 am and that gets me through. However, for the sake of my heart etc., I do force myself to do a maxalt holiday every 5 days or so and I get through those days using codeine (tylenol #3). I have never felt I got a rebound headache from maxalt and would really hate to go totally cold turkey.

Hi Clarice,
Do you see a neurologist? Another triptan or maybe a preventative might help. Codeine causes rebound in a lot of people. You can try some OTC magnesium now to see if that helps, but it won't be a long term solution.

Right now I just want to get out of this particular migraine. It can't be rebound from codeine, which I use very sparingly. Thanks for the magnesium suggestion. I may give that a try.

I forgot to answer the question about seeing a neurologist. I was once referred to a sweet neurologist who did a laying on of hands ritual (really!), which had no effect, and prescribed daily gabapentin, which made me dumb as a stone and didn't help. So I am not optimistic about what neurology can do for me.

If you are this sick and your meds aren't working look for a good neurologist.

Clarice, first I want to welcome you to our forum, glad you found us.
I am sorry about the pain you are in - do not despair, we get into those states somehow, but we usually manage to get out of it.

I agree, that you are probaly in a rebound with maxalt, which means your body go use to it and is not responding but "demanding" more.

You do not need to go cold turkey, what you probaly need is to get a help from your doctor to break this current cycle of pain.

The quickest way is probably to ask for a course of prendisone, or a similar steroid, for 5/6 days, which is very effective for breaking that pattern of pain.

However, yYou must make sure that it is all right for you to take it as if taken too often this can cause serious s/effetcs. But as an occasional rescue it is of great help.

Or, you can have a course of DHE45 injections, but this must be done under strickt supervision, in case you get bad reaction.

After you break that pain cucle,t you will need to re-structure the way you take your medication, by limiting it to twice a week, no more.
You can also try a different triptan like Imitrex/Imigran.

There are some other pain control methods tried and tested by many of us here, but let us know how you get on with the above solutions, and do not panic - you will probably soon find something that works for you.
Each of us is different, so do not get discouraged. But then you must know how it is with migraines. It changes, and we need to be ready to change with it.
Good luck and keep in touch.

PS YOUmade me smile with the lying of hands! If only it was so simple.
He was probably nice, but as lost as you were, and did not know what to do. BTW Gabapentin might work if you are on the right dose, but yes, it makes you sleepy specially in the beginning.

Check on internet in local hospitals for some reaputable neuro's who specialise in migraine. Ask before you make appt, if they are migraien sepcialists.



T

Hello Clarice, Welcome.

I just recently went through a month and a half of daily migraines. It turned out to be rebounds from the T-3, Ibuprophens, Triptans and whatever, even through I thought I was being smart about alternating painkillers when I took them. This may not be the case for you, of course, I'm only tossing it out there as a consideration. It just sounds like it could be if you are taking an abortive everyday, you are likely taking painkillers everyday also. You may have been caught in that trap.

For myself, I had to confess to myself, and then to the doctor (I came in exhausted, pale and in enourmous pain) and he put me on propanalol and gave me Toradol (NSAID) for pain. I first got myself off of the codeine and tylenol as it is the rebound worst culprits, but there is struggling there for a week. (Only two days are bad).

Today I still take my triptans but am real hesitant to take pain killers unless I really need them. Codeine only if it is a #8pain and I can't stand it anymore. Last night I had a #4pain and took a triptan, and went to bed with an Ativan to sleep instead of a painkiller.

I admit, I was afraid to let go of my painkillers. I still have them, but I decide when to use them. The triptans I continue to use. No one takes those away from me. These migraines are too painful to go alone.

When I got rid of the painkillers, the headaches stopped coming every day and I did not need the triptans daily, but I am on Imitrex and not Maxalt. There is conflicting information out there as to whether triptans cause rebounds. My experience showed that my triptans did not cause rebounds on me.

Another thing that I found pivitol in my recovery is one of stress. When we are in pain, we clench all day and are likely clenching at night and are not getting a restful sleep, so we wake with continued pain. A muscle relaxant at night will usually help break a bad cycle.

Now if it is not a painkiller issue, then you really must see a doctor.

Best of luck to you.

Let us know what works.

yikes, you have had these monsters longer than anyone here, i think. me......41 years. others that long or longer. it's a contest we do NOT want to win!

i agree that neurologists aren't usually a lot of help, but please don't give up on that route. interview several, if you are able to do so, financially. YOU, the sufferer, should expect a listener who will not make up his/her mind in the first 30 seconds.

that's what happened to me several months ago, and i so appreciated the support when i "ranted" here. truly, i don't know what i would have done without this forum, and i've read it almost daily for 14 years now.

as for daily triptans, i have been forced to take this route for at least the past 10 years, since i have nothing else that works. i want a life. these drugs give me one. they do not take all the pain away, to be sure, but they allow me to be functional and work part-time at age 70.

my heart has been thoroughly checked out, and i have no damage from the massive amount of triptans i take. supposedly. i would never recommend this scenario to anyone. one does what one has to do and so far, so good.

please know you are welcome here, and when your head allows you, do read a ton of past posts. you can glean so many ideas and info. also, the members are eager to answer questions within the scope of our experience.

NONE OF IT is medical advice. dr. larry robbins sometimes posts, and he is a migraine expert. but no one, naturally, can address specific cases without seeing the migraineur in person.

as someone else said, "rebounds" are controversial. the only way to tell is to taper off the possible offender and see if you improve. best wishes, dianne

Hi Clarice, welcome to the forum.

Please remember not to take any of the posts as medical advice.

The last time I was in status the cycle was broken with dexamethasone. Actually, that was the time before, the last time I was in status my pain doctor did facet injections. That and a double hit of some triptan (which I don't normally take because they have very little effect for me and are not worth the side effects for me.) It wasn't instant relief, but neither was the dex...both took a few days but then the migraine eased up.

My saving grace so far has been botox, which is often quite successful for me, and at times can give me 75% improvement for weeks at a time. Daily workouts have also been very helpful, though of course I doubt either of those are an option for you while in status.

I hope you find something that helps you very soon. Know that our thoughts are with you and that many of us know what you are going through.

I agree that an infusion of dexamethasone can help break a bad cycle. My doctor has used it with me several times. But as mentioned it doesn't offer immediate pain relief so I also get Toradol and Phenagren or Demoral and Vistral at the same time and that gives me a break from the pain.

Hi Clarise.

So sorry to hear about this terrible bout. Many people seem to get a shot at the ER to break the cycle for for long running migraines like this. I've not gone that route myself, but I've never had an episode go that long. Maybe the others that go there can tell you what they get.

It does seem you need an immediate medical intervention though. Trying to find a better preventative is for another day.

Thanks to all have replied to me. It is really good to know I am not so alone in this ordeal.

I have a new theory about what is happening. I respond badly to red wine, with a migraine in about 15 minutes. Needless to say, I do not consume it at all. Lately though I have been drinking a really yummy mix of club soda and tart cherry juice. It occurred to me yesterday that maybe whatever it is in the skin of red grapes may also be (sometimes) in the skin of cherries. I have been drinking a bit of cherry juice every day. Today I am stopping it, to see what happens... What do you think?

Hi Clarice, I second the comments of others here. Our posts should not be taken as medical advice. I think that when we respond to posts in a forum it is best to compare experiences and share information. Giving direct treatment advice is always difficult and could be dangerous.

If you've had a 19-day migraine I would be concerned and go straight back to your doctor. Status Migrainosus (or however it is spelled) can be dangerous and needs to be dealt with by professionals. I understand that IV DHE is sometimes used as a method to break this and often works.

I have had constant head pain at some level for ages now. I'm told this is not Status Migrainosus. I take very few triptans as they only work in specific situations for me. It would be a waste of effort to take them all the time. Do the triptans actually work for you everytime you take them?

It seems to me that MOH in general is overplayed. Triptans are just about the only migraine specific treatment there is and I've been told by my neurologist "If you need to take one, you need to take one".

Yes, the maxalt definitely works for me. It takes about 3 hours before it takes effect and then wears off by the end of the day, but it does get me through the day so I can go to work. Otherwise - if I do without - I have to use some codeine.

If three is something new you are doing (cherry juice being the example) it is certainly a good idea to stop it to see if it is making a difference. Given that life has so many variables, it is often hard to know what all could be a factor though.