Yeah, I think I'm going to ask my family doc about it. If she can't prescribe it, I imagine that my neuro can have his secretary call it in if she feels it would be beneficial.

Uggg....headaches are one of the worst MS symptoms I've had...and definitely the longest lasting....the headache started in January when I first got sick....and I can't say I've been 100% free from it since then!

I tried Topamax....but the cog fog got increasingly worse while on it - so I stopped and things got better. They do use it for seizures...tho the list of side effects can include numbness - which I already struggled with when I started taking it back in February.


I think the other med they sometimes rx for it can be neurontin. Years ago I struggled with migraines and they gave me neurontin for that and it helped. (I believe this was before the newer migraine meds hit the market.) They use it for nerve pain, too. I think lots of people here have used it or currently use it.

Both of these have their own downfalls. I've also tried painkillers....finally landing on percocet - the only one that made any dent in the pain. I am not able to take the percocet post HiCy YET (not allowed any tylenol, advil, acetaminophen, etc. until my blood counts come back)...so right now I have oxycodone without the acetaminophen. I would really like to see if Tylenol can kick the headaches now - but I just have to wait. Unfortunately, I don't like being on pain meds, so I wait until the pain gets to a 7 (on scale of 10) before taking the meds...whereas, I would be trying tylenol much sooner.

Anyhow, I share your pain.... headaches can be so debilitating. I hope you find some relief!!

~Keri

I agree that we should never assume ANY symptom to necessarily be related to the MS, and in this case the potential treatment would likely be the same no matter what the cause anyway (Topamax for severe migraines).

Remember the story about my daughter and caffeine causing migraines . . .? She told me yesterday that she tried another coffee a few days ago, and had the same results. Sometimes we do need to use trial and error to see if it is something in our diet causing this too.

Having said that, migraines are recognized as rare symptom of MS. I think the stat is something like 15% -58% of PwMS experience migraines, which is much higher then the general population.

As I said earlier, luckily I don't normally feel the extreme pain that most people talk about with my migraines, so I just have to shut myself in a dark room to get rid of the other symptoms.

I have a very high tolerance to "normal" pain though, but nothing helps the neurological pain I've experienced. People with spinal cord trauma/injury, which is basically what we have when we have activity in our spinal cord, can experience central pain. This can manifest itself in many ways, and for me, I get those "spinal headaches" occasionally. Fortunately I've only had them twice, and they lasted for 3 - 4 weeks each, but it is obvious that this is related to some sort of inflammation going on.

Cherie

The past 2 days have been gloriously headache free, finally! This includes the pain in the left side of my head finally being gone. I think getting out and doing some grocery shopping and running around may have helped.

I think MS or no MS, I'm just a migraine sufferer. The migraines have been there longer than the MS has (or is suspected to have been).

I have had migraines since I was a child, although the first time I remember vomiting from them was when I was 15.

My dx of MS came in 2007, and prior to that I had stopped working since 1999 because of what I was told was Chronic Fatigue and Fibromyalgia along with some unknown causes of pain in my legs and arms. (Now it's known it's been the MS all along)

My neuro can't say whether or not my migraines and MS are linked as she has both patients who have both and patients who suffer from only one or the other.

I tend to lean toward the possibility that they're linked. I'm not a medical professional but the fact that they've both been a huge part of my life and are both neurologically stemmed says something to me, and I don't think it's just coincidence.

I have a friend who is a neurologist specializing in migraines. She's told me that migraines can absolutely be a secondary MS symptom.

She also told me that although not frequently, lesions caused from migraines and ones from MS can resemble each other. (She's seen this happen in her own practice.) In general though, MS lesions tend to be deeper in the white matter.

Beary, you rock. You know that girl?

I have no doubts that migraines are, in those with MS, frequently a resulting "symptom" of MS.

When headaches/migraines are mentioned in MS discussions, I tend to pay close attention. It's really no surprise to see folks who never suffered migraines before suddenly experiencing migraines with MS.

In any event, I get all types of different headaches and migraines. Sometimes it's hard to really evaluate it and say, "This is a headache. This is a migraine. Well, I'm not entirely sure what this is because the pain is not typical of headache or migraine!". I've had the regular old headache that I can take a couple Tylenol and rid myself of in 30 minutes, but then I've had the headaches that come on gradually over the course of a day, and no matter how many pain medications I take, the only relief is from sleeping them off.

I've had periods of being 'headache free' for months on end, and then suffering back to back headaches for months on end. It wears on you, that much is for sure.