Migraine

Hello again! Thanks to all of you who were so helpful in my intro thread. We are getting so frustrated!

After waiting a week for the Topamax authorization, and calling the doctor two or three times with no return phone call, Luke finally heard from him last Friday. He said he had spent 15 minutes on the phone with the insurance company, who in the end stated he did not have coverage! We have paid 3 months' worth of Cobra,and had already been through this with them prior to the topamax even being prescribed, during which time they said they had updated their records and had him back on coverage.

Anyway, because of this, the doc changed the order to amytriptyline, since it was cheaper, and changed the pain med from Vicodin to tramadol. I was hoping that some of this was MOH, but he had several days with no pain med and the headache did not get any better and, instead, came back with increasing migraine symptoms (eye pain, excruciating head pain, etc). So...we've pretty much ruled out MOH at this point; the tramadol is helping some but, of course, is not as strong as the vicodin.

He also started going to the chiropractor, but the chiro's about ready to give up on him, as it doesn't seem to be helping.

One of the biggest problems he is having is this extreme persistent vertigo...even worse than the pain. The pain ebbs and flows, and sometimes gets somewhat better on its own, but the vertigo is becoming such a problem. He's now been off work for five weeks. The chiro told him today he thought he might have Meiniere's, but his symptoms don't quite seem to fit; while he's had some tinnitus, it doesn't seem to be unilateral, and the vertigo is not coming and going but is constant.

So...questions...I searched amytriptyline here and saw some of you had some success with it. He took his first one night before last, and promptly threw it up (whether from it, or the tramadol, or the dizziness, no one is sure). He took a second one last night, and has seen no change, but of course things like this take a while. For those of you who had success, how long did it take before you noticed a difference? For those of you who didn't, how long before you gave up on it?

Also, if any of you have had any of this kind of extreme, consistent vertigo following or during a prolonged migraine attack, I would really appreciate any advice you could give. Was there any med that really, really helped with it? He's tried otc dramamine, which didn't help. He also takes zanaflex with the tramadol to keep his neck from spasming up, as he does have a lot of tightness in his neck muscles. That alone can cause dizziness, but he has it the same even when he hasn't taken any zanaflex.

He also mentioned that he sometimes gets a crawling sensation along the base of his neck, on one side or another...I assume this is a nerve irritation from the tight muscles. The chiro told him to ice his neck, which he has done a couple of times with no noticeable change.

Sorry to be so long-winded...and thanks to any of you who read my novella and might be willing to respond! We are supposed to call his doc back on Thursday or Friday and let him know how things are going, but at this point we have made absolutely NO progress.

Donna

Hi Donna,

I can relate to the run-around your family is getting from the insurance and docs. I'm on a two-year uphill battle to resolve migraine/heart issues. Just when I think it's worked out, I go another 3 months with no answers and pile up some useless tests on top of it. I can only imagine how end-of-the-rope you feel, and your son feels, right now.

I did not take Amytriptyline, but I was on Nortrytipline for a while. It did not work for me. Let your son know it may be 4-8 weeks before he notices an improvement while on any of those meds. It can take a long time for any anti-depressant to begin functioning noticeably. Some of us will actually be on more than one drug for prevention of migraines. It can, unfortunately, take years to find the right med combo.

As for the vertigo...Wow. I feel for him, but I can relate. Unfortunately there are not very many good meds to take for it without an Rx. I have a lot of vertigo with my migraines but I just have to ride it out; I don't take medications for any of it. Sometimes I wake up with the ceilings spinning and my bed jumping around. At work I've put down by a few severe spells that lasted for days. I haven't been tested or questioned about Meniere's, but tinnitus and hearing loss are all part of my migraine syndrome. The crawling symptom you described...many of us get that too as part of aura or during the migraine. Mine occurs on the top of the head, as if someone were dribbling a melting piece of ice over it...If a cold pack doesn't help him, many of us here have had success with microwaveable heating pads. Not for the creepy-crawly sensation, mind you, but for the head pain itself.

Vicodin and tramadol...Can he take any of the abortives, like the triptans or DHE? I take vicodin, Toradol injections, and DHE. Long-term treatment with pain meds isn't suggested because of the MOH factor, but triptans can also contribute. Triptans or ergot derivatives, however, will abort the attack rather than masking the pain like narcotics will.

I wish I had better answers for you..Hopefully someone here will have better advice for you.

I just wanted your son to know he's not alone.

I don't blame you all one iota for becoming so frustrated. I think pretty much anyone that has gone through all that your son has in the last few months has more than every right to be frustrated. Insurance is such an ugly thing to have to wade through when you're dealing with more than you have the reserves for anyway. Sigh.

Has his doctor ruled out MOH? One thing I can tell you from experience is that when you go off the offending pain meds, rebound tends to get worse for a few days before it gets better. It's a persistent thing, and when it's constantly screaming, "Feed me!" while you try to ignore it's pleas, it can get rather ornery and snarly for a bit before it gives up. Been there, done that. A few days without meds might not be quite enough to tell whether it's really rebound or not. Some people need longer to work through it than others.

As for the chiropractor, if said chiro is ready to give up this soon, then maybe he's just not the right chiropractor for your son. Not every technique is a perfect fit for all of us. I've learned that personally. The first one I saw several years ago was the grab and twist really quick kind, and it goobered up my neck, triggered me fiercely, and was a miserable experience. The chiro I've got now, though, is phenomenal. She doesn't believe in the brutal twisting and cracking techniques. She uses gentle actuator tools, massage, and gentle manipulation. It's a bit slower of an overall process, but it's perfect for my needs, and it's making a huge difference. Just something to think about if your son feels like he doesn't want to give up on chiropractics just yet~he might want to ask around and compare techniques.

I've not had vertigo with migraine, but I have had a good friend go through weeks of vertigo with hers. There's not much they can do, beyond look for other issues. They sent her to ENTs and audiologists and the like to make sure it wasn't an underlying inner ear thing. Beyond that, she just had to try and be patient and work through it. She still has issues, but she's learned to work around it pretty well.

As for the the how long it might take for the amitryptiline to kick in/notice effects/etc., that is so very individual. A fair trial of a med is considered to be at least three to six months. Another rule of thumb is that it can take three to six weeks before you start to notice a difference. It takes time to build up, and then time to even out. With differences in metabolism, absorption, and other chemisty things, there's really no way to compare experiences and get a true picture.

Last but not least, as for the crawling sensation, I think I'd be for getting that looked at and diagnosed. By all means, get the chiro's input on what he thinks it is, but also ask the doctor, too. It doesn't hurt to get another opinion.

Thanks to both of you for your replies. The doc called yesterday and said he will refer him to a neurologist; we're going to check to make sure that the neuro has some good headache experience.

I'll have Luke read this, and see if he has any more questions...thanks again, so much! I think it does really help him to know he's not alone!

Oh, I do know that he found some information on headache and magnesium supplements. Anyone find that it really helped you? What dosage did you use for max benefit?

Magnesium dosage is very variable. I take 400mg of magnesium daily for migraine prevention, and it seems to work pretty well for me. Most people that take it for migraine take much more than that, though. Most of us that have shared our dosages land in the 1,000-1,200mg range, I believe. Usually magnesium is taken with calcium, too, since they work together. I can't seem to ever find a calcium supplement I can tolerate, so with my doctors' collective okay, I skip the calcium, other than what I get from food.

I've got fingers crossed that the new neuro will be very helpful. It wouldn't hurt to ask about magnesium at the first appointment.

Well, we just saw the neurologist for the second time today...he scheduled Luke for a lumbar puncture in the morning, to check pressure for pseudotumor cerebri. He said it is quite rare in males; he's had maybe one other 15 years ago, but sees one or two cases a year in females (still quite rare). He told us if the pressure was normal, he was going to admit him to the hospital for an overnight stay to treat him with IV meds and get the pain cycle to stop.

We are so relieved that at last we have someone who is actually DOING something! I've already searched for "pseudotumor cerebri" here and read a few posts...will be heading on over to some of your links now for further research. The doc told us if he'd been a woman, he would have ordered the LP immediately when we saw him two weeks ago...he does seem to have a lot of the symptoms. Hoping this is the case, as it is treatable.

Thanks to all for your help here!