Chronic migraines in MS patients

[JennyO63]

Why has nobody addressed this topic yet that I can see?? Every MS patient I have met at MS Society meetings have varying degrees of migraine, but are not taken seriously. My SPMS patient has daily frontal migraines that no med seems to be able to touch. He has had a fresh MRI about 5 months ago with slightly more lesions. I have only mind over matter techniques to share with him, making him watch alot of silly cartoons and comedy everyday as tears run from his eyes. I've had a quack neurologist tell us that "Paul would be a waste of my time as well as my research facilities' time. It doesn't matter that he can walk with a walker 60 yards each day~he's in a powerchair! Take him home, give him the remote, and let him live out whatever life he has left". Since he was the only doctor in Paul's state that was performing MBP8298 study, we are stuck with possibly flying him back to HUP to Dr. Markowitz from Nevada. Keeping hope alive for Paul is a fulltime job! Can someone please address HEADACHE in MS patients,please?

[Dr. Daniel Kantor, MD]

I completely feel for you and you have touched upon my particular specialty and interest.

I specialize in MS and Migraine -- both separately, and more interestingly to me, the combination thereof.

There are 40 million Americans with migraines (of which I am one) and 400,000 Americans with MS. This means some people are going to have both by chance and then there is a question of are they associated or not.

It seems clear that migraines do not cause MS, but can MS cause migraines? A lesion in certain areas of the brainstem responsible for migraines (e.g. the periaqueductal grey matter) can cause migraines and in some people optic neuritis mimics migraines (some people have the pain from optic neuritis even years after the ON).

Migraine is the first symptom of MS in 4% of patients.

Also, medicines used in MS treatment may trigger migraines in people with a predisposition to migraines.

The most common reasons, however, for "chronic" migraines (chronic daily headache) in the entire population is overuse of over the counter medicines (like acetaminophen, ibuprofen, naproxen etc.).

I am very concerned by the uncaring remarks you received from the doctor -- please remember that there are many of us caring neurologists and Dr. Markowitz is a good example. You don't however have to travel quite so far in the cold -- there are MS neurologists in Nevada.

Also, you may want to consider seeing a headache specialist as MS specialists aren't always experts in headache as well.

[Lulu54]

Hi Jenny,
I can hear your frustration in the words you have written here.  Paul is fortunate to have such a passionate caregiver to look after him. I'm sorry I can't add anything to your headache question - I do have MS but I don't experience migraines.  I honestly can say I have never had a migraine in my life.  

May I suggest that in addition to waiting to hear from Dr. Kantor, you repeat this question over on the patients' forum - its here at
http://www.medhelp.org/forums/show/41

Someone on the regular forum will have suggestions for you and Paul.

My best,
Lulu

[Heather3418]

I had migraines for exactly 13 months just before I was diagnosed with MS.  I had never had trouble with headaches in the past, before I woke up one day with a headache almost beyond description.  It lasted 6 days.  I stayed in a darken room, except to take care of hygiene needs, only drinking sips of water.  I wasn't able to tolerate food at all.  I went to the doctor on day 6 and she thought I had had a small stroke.  I was in a Neurologists office that afternoon.

I had the auras at the beginning of the headache.  When the auras stopped, my vision suddenly blurred, then the drastic headaches began.  This went off and on for 13 months.  One day, I woke up and the migraines were gone, just as suddenly as they began.  

In all these years after, I have had only 3 migraines.  I truly believe that this was the start of "the MS."  I don't think anyone could convince me otherwise.

During that time I was put on a beta-blocker and a pain medication called Esgic.  Back then, nothing really helped the pain, but an ice-pack to that one side of my head.  It was always on the right side.  Today, most of my MS symptoms are on the right side.  My spinal lesion happens to be on the right side of the cord in my thoracic area.  Don't know whether they are all connected.

I feel for those that suffer from migraines.  They are definitely life alterting.

Heather

[JennyO63]

Yes, I had that experience with my patient Paul and a Neuro in Nevada as I explained. Paul has had MS 26 years now and at 47, can barely throw his legs off the bed with his arms and throw himself into his powerchair against his bed. After the negativity from Neuro from hell, Paul has given up trying to walk,has had two hospitalizations while I was off his case last summer with MY chronic migraine syndrome! Fill in homecare left Paul with infections in his bowels, kidneys,and bladder as well as a gouge in his side. The gouge was a screw loose inside the Jazzychair's arm. I have been tryting to get MY migraines stable, much less see him suffer everyday.
I never thought about lesions on his brainstem!! His pain is right across the forehead, moving from there.
Thank you, everyone for understanding! Being a homecare hospice aide/patient advocate for MS while having chronic daily migraine is no walk in the park! Nosebleeds and nausea while changing someone with bowel incontinence~ NO EASY TASK!
To all those with MS~ have mercy on your caregiver! I got in trouble with Paul for oversleeping after a two day migraine!! Ease up! Treat your caregiver with respect and friendship, don't kick us when wer'e down! We know MS is a horrible disease~ we are human, too!!
I noticed that the Beta Seron 1b 0.3mg also can cause headaches. Just what Paul uses! Any news on MS & Migraine, please let me know!!!

                    Thank you so much, doctor!!!

                              JennyO63

[ChunkyMonkeysMommy]

I am a migraine sufferer. I do feel that mine are related to the MS, but can't prove the correlation, obviously. I have had migraines so severe that I basically felt like a vegetable. There have been times that they have rendered me immobile, unable to even lift my arm/hand to wipe the drool that I could feel running down my chin, unable to respond when spoken to, unable to get up and walk. There have been times that I have had such horrible migraines and tried to go to work anyway, only finding myself being forced to go home due to the inability to concentrate and it only worsening my pain, then not remembering how I even got home - I DROVE MYSELF. Yes, that was stupid on my part. There were other times that my co-workers and boss wouldn't let me drive because they could tell that I was in no shape to. They actually thought that I was having a stroke. Yes, I completely understand the frustration. The only relief that I have ever found was strong pain medications that would at least help to knock the edge off and allow me to sleep, usually through injections at my doctor's office (a cocktail of demerol (sp?), phenergan, and toradol. And it often took 2-3 injections to even come close to helping. When I get them, it usually lasts for a couple of days, then the third day I'm usually just exhausted, like the migraine has taken every ounce of energy from me. It's absolutely horrible and the worst pain I know.

[biowham]

This is an interesting question. I have no history of migraines, but last week had a major aura with no associated pain. It was apparently just a classic migraine aura, with the scintillating scotoma, etc. Lasted about 30-40 min, then went away, with no apparent sequelae except an almost post-ictal enervation. It was truly bizarre. I didn't see a doctor about it because it really was just what has been classically described as aura.

I'd be interested to see how many of our dx'd posters have migraines, too.

Bio

[JennyO63]

My migraines started when I turned 30. I never had such a headache before, but saw my friend's mom have cluster migraines in the eye. My migraines are almost always left sided. When I have aura with no pain , I know one is on its way within 24 hours or less. I felt like I had a tumor in my head. Cat scans & MRI's later~ show a slight pinch in my neck, but not enough to cause this much pain! My neck has lost most of its curve. I am 46 now, and when all else fails, it's ER time for barbituate shots!!  Can't wait to learn craniosacral massage techniques in advanced massage class coming up!!