Status Migrainosus & Cluster headache

[mle134]

Have been putting up with a constant headache since December - many times so severe I can't function- have been hospitalized 2x to try to break the headache and was diagnosed as status migrainosus mixed with cluster headaches.  Have tried many different treatments, none successful so far.  Wondering if anyone in this community has had experience with successful remedies for a similar condition.  

I have had migraines for 28 years, but they always followed the same pattern, until this looooong headache which medication just can't seem to kill!  I am finding this increasingly disabling and feel my pain tolerance is being affected by too much pain too long....

Any ideas/suggestions would be appreciated.  Thanks!

[mle134]

Thank you (and all here) for their kind recommendations and comments.  I have finally been seen by headache specialist, and have been diagnosied with hemicrania continua and been given an increased dose of indomethacin.  I am hoping this will fix my problem!

One note - I did find the biofeedback training and the associated exercises very relaxing, and have set aside some time each day to practice this.  Unfortunately, the relaxation did not help the pain, and I find it difficult to concentrate on the techniques when in severe pain.  Perhaps repetition will help or with the new dosage of medication I won't need it.

[car1955]

Yes alot of people call it dopamax,I take only 75mg.I would like to try to go off of it when I recover from this surgery.Check out the botox even though its very temporary.It took me 3 times on and off to get used to topamax I was so desperate.I always have less headaches when I eat right(thats not so easy to do)Good Luck!

[mle134]

I took Topamax for around a month, but as the dosage increased had great difficulty with balance and eye pain.  I couldn't walk a straight line, and was to put it gently kinda goofy on it.  I also started to develop double vision with it - all disappeared after I stepped down off of it.  Just not the medicine for me I guess!  I guess for me it was dopamax, because I was sorta dopey on it...

[car1955]

Maybe give topamax another try it took me a few times.It does help your weight,I'm about 25 lbs less since taking it.I also watch what I eat.Yes it was major surgery,I'm still out of work 3 months and will be for many more months.I go to physical therapy.I believe it has helped my headaches,but the topamax has been great.Botox like I told you only one HMO paid for me 4 years.When I had to switch insurance they would'nt pay.Most won't some will.Check with your doctor.I may have my doctor appeal it again.What do you mean you can't tolerate it,the pins and needles in your hands goes away after a month.It takes a month or two for it to work like most meds.

[mle134]

Tried Topamax last winter, but I wasn't able to tolerate it. I was sad because one of its side effect is weight loss, and after taking a lot of steroids I certainly needed the help!

I was checked for neck problems and fortunately I didn't have problems like yours.  Disc replacement is a major operation.  Did it help your headaches or was the damage already there?

My neurologist is thinking about having me do another DHE infusion cycle.  I had a four hour pain free period during one, which is the only pain free time I've had in 7 months.

I will ask further about Botox.  I'm on an HMO, and they are not inclined to approve expensive treatments tho.....

[car1955]

I have had migraines for 17 years.Botox helped but after four years my insurance company stopped paying for the shots.So I stopped getting them because they are too expensive.I believe it is not FDA approved for migraines,it should be.I take Topamax 75mg. a day for the last 2 and 1/2 years and it has worked great.Some people take more or less.I still get a few migraines and take imitrex.Do you have cervical disc problems?I did ,I had two discs replaced three months ago.But ask your doctor about Topamax.

[DrNoopurMD]

Hi,

You are right when you say you need to be careful with the amount of pain medications that you take, as pain medications if taken in excess over long period of time can cause rebound headaches. I wish you all the best with the biofeedback therapy, although you can try simple breathing exercises also simultaneously.

[mle134]

I tried an occipital nerve block and trigger point injections - the consensus was if these didn't help (which they didn't) it was doubtful that Botox would help.

Do you think there would be a difference?  I'm not sure what exactly Botox does....

Thanks for your suggestion!

[fearlessone]

Have you tried Botox injections?

[mle134]

Thank you for taking an interest half the world away!  

My old triggers for migraine seem not to change this headache, nor have I been able to identify new ones (even weather!).   Since I am in constant pain, with exacerbations every so many days that lead to disabling episodes, I may be experiencing triggers and not recognizing them??

I am starting biofeedback training (which is similar to breathing excercises and meditation) next week, so maybe there will be some success.  I hope so.  Darkness helps my light sensitivity and the less stimulation from the environment the better when the pain is at its worst, but the headache has a mind of its own and does not decrease in pain without medication at this time.

I have had DHE in infusions (with not much success), but injections have not been mentioned.  I will ask my neurologist at the next opportunity.  I have been extremely careful not to over medicate (not wanting to make a bad problem worse!) but not enough pain relief is just about as bad....

[DrNoopurMD]

Hi,

Have you been able to identify a trigger for your migraine attacks? It could be a food item like caffeine, chocolates, processed meats or simply a change in weather or environmental stress. I would suggest you to sit in a quiet dark room when these attacks occur. Try doing some breathing exercises and meditation. In some cases dihydroergotamine injections helps. You can discuss this option with your treating doctor. Good luck!