nero the neuro told me the same and then in same breath said if its a spinal lesion they can cause those ON attacks and or the severe headache

I've never had a spinal MRI. I was just curious what you dr had said. It would be nice if they all had the same (correct) info.

My headaches have been such a mystery for over 30 years. Each doctor I went to would say something different. Meanwhile I still have them. But they do seem to get much worse when my ms symptoms are acting up.

Thanks.

have you poked your head in the ON forum http://neurotalk.psychcentral.com/forum105.html

was just thinking maybe read some of the post and see if someone else describes what you are going through. they have an injection and 8 months ago I knew what it was called, its to help with the ON headaches, I do not get them a lot but when I do, ice is my best friend, my cousin lives with headaches 24/7, it isnt easy,


(sorry for the derailment of the thread, now back to our regularly scheduled program)

Golly, I didn't know there was an ON forum. Thanks, Frank!

I can see how this could cause anxiety in a lot of people a lot of different ways. Gosh, to be treated for MS for years and years, especially taking one or more of the DMD drugs, and then to be told you actually don't have MS but something else would be awful. Then again, it would be good.

In that case, I think I would doubt everything the doctors had told me from day one!

If you want my honest opinion, yes headache/migraine CAN be a part of MS. They can exist independently, however my MS is almost completely sensory, and when I'm in pain it's not below my neck. It's head pain.

I thought it was migraine or headache for so long, and then wondered why it was that taking huge amounts of OTC medications wasn't helping, and the pain would increase as the day dragged on.

Once I was diagnosed with MS, the 2 years of headache/migraine misery disappeared after the steroid treatments. Hrm, interesting.... my last relapse, the head pains returned.

I have head pains now again. I have to take Clonazepam to cut through the pain I have. It does help however, where OTC drugs (Tylenol and Advil for example) didn't do anything to help.

So yes, I do think that headache/migraine can be related to MS, and I'm walking breathing proof of it

Hi Laura,
Where on your head do you feel the head pain? Just curious. I get it on the very top at times, or sometimes in the back of the middle of my head, where the two low skull bones are (and glands under them). It may include the back of my neck (brainstem area) in the mix.

It worsens with a relapse and steroids help after a month. Clonazepam daily helps when it is not too bad.

I always have sinus headaches when they are bothered by infection and twice a year a Migraine that puts me to bed in the dark.

There are so many kinds. Which do you have if I might ask?
Lady

Aren't there newer studies/reviews that say headaches are a part of MS for some people? I've always struggled with headaches and migraines. About 9 yrs ago, a neuro sent me for an MRI of my brain and it showed an "UBO" - unidentified bright object. He dx me with "pseudo-tumor" and told me to lose weight and he gave me meds. No idea if at all related or if onset of MS. Don't remember the name of neuro or where I had the MRI! Bummer, wish I could get my hands on it, just to see if anything else was actually there (well, besides for my brain that is).

~Keri

There's something about the nature of MS that makes the undiagnosed wonder if they don't really have MS, and the diagnosed wonder if what if they DON'T have MS but some other "mystery diagnosis" disease that only 1% of doctors have ever heard of.

It's all so confusing. I can't help but think of the people who will hear about this and start another round of second-guessing. And how many friends and relatives will call their MSrs and say, "I just read this and you might not have MS!"

I agree although as a diagnosed person while I wish I didn't have it there wasn't and still isn't any denying it imo.

My biggest concern related to the article is that those who have not accepted their diagnosis will have this to further muddy the waters.

My head pain most of the time, extends from the top of my skull on the left side, down to my temple (left side) and under my left eye. It can also involve my top row of teeth on the left. I also get similar pain on the right, just not as frequently and it seems to center around the ear and outwards into the temple/eye area.

The left side is definitely the most problematic. I almost never have pain in my forehead. I had a 'true' headache recently and was almost surprised to feel what a true headache feels like... this is quite different.

My dentist diagnosed Trigeminal Neuralgia and I'm certain I had attacks of the 'classic' type years back. Now what I think I'm dealing with (and my neuro agrees) is Atypical Trigeminal Neuralgia.

I'm affected by this type of head pain almost daily. To differing degrees. Since I quit smoking in September, I've been in pain with the head. But at the end of the day, I quit smoking, so I can suck up the head pains and eventually my body will untangle itself