Last night, the Huntington Medical Research Institute (HMRI) hosted a presentation/reception/wine and cheese thingy (red wine, which a lot of migraineurs can't drink, but their spouses can). I went because I wanted to learn what I could.
Actually, I went because I want to get off of these drugs. If learning will help, I'll do that. If driving backwards down Colorado Blvd. will help I'll do that, too.
Little is known about migraines, yet there's enough to say about them that we could talk about them for weeks. Among other things I learned last night, one of the most surprising is that very little research is being done into this disease suffered by 30 million Americans. But aren't we lucky? Of the very few facilities in the United States studying migraine, one of them is right here in Pasadena.
And last night's wine and cheese was all about recruiting migraine sufferers to volunteer for research.
Hmm. They have to extract spinal fluid. You know--a spinal tap. Our host Larry Wilson, Public Editor of the Pasadena Star-News and a migraineur, said that when these specialists tapped his spine he "didn't feel a thing."
I have a very low threshold of pain.
Do you think I signed up?
18 comments:
No way!
I would guess you did. A spinal tap might fall into the "driving backwards down Colorado" category? I get them too, but they have lessened in recent months (althought
they've always come in clusters). When they were at their worst, I would have done anything at all... Good luck with whatever you chose. What a hard choice to have to make!
I had a girlfriend who suffered from migraines.. what worked for her, she took a tylenol and a pseudophedrine..
Another friend took tylenol-sinus...
Yes.
It sounds like you've tried all the available fixes already and found them lacking.
Feel better.
Of course you did. Few things are more painful than even a regular, garden-variety headache, so I can only imagine what it's like to get a headache that aspirin can't control.
It isn't a commitment yet. I signed up to interview and find out more. If and when I commit, I can always change my mind.
Unfortunately for me, but (I hope) fortunately for the migraineurs of the future, volunteering to be a guinea pig for these guys is no guarantee I'll find relief. But if it helps them figure this thing out, I'm all for it.
To be clear, I have a handle on the migraines. It's the in-between drug, what they call the "prophylactic," that I find so hard to deal with.
I was going to guess that you did sign up. Glad you have a handle on the migraines. What's the issue with the in-between drug?
I like the pink atrium.
Susan, the drug I take, an anti-seizure medication called a topiramate, has been helpful in decreasing the frequency of my migraines. But it makes me sluggish, stupid and forgetful. The memory problems are the most upsetting.
Alternatives I haven't tried are anti-depressants and blood pressure medicines. All the "migraine preventers" were created to do something else and only sort of help with migraines. There are no drugs created specifically to prevent migraines.
I live in a natural state of a topiramate which is why I'm on methylphenidate.
Your photo reminds me of James Turrell's Skyspace at Pomona college. Take John to dinner at Walter's and when it's dark, go search out Skyspace. It's a transformative (maybe thats a bit strong) experience
your welcome
My guess - you'll decide to do it
It's hard for me to fathom you being sluggish and stupid. You manage to be productive and brilliant despite the drug.
PA, that's right up John's alley. Birthday date night, July. Thank you.
Kind words, Susan, thank you. I'm better now than I was. For a while there I couldn't work after about 1pm because I was so worn out. Now I have more time in the day thanks to hormones. Yippee!
Your photo is a beauty.
I can see why you'd check out being a guinea pig for this research. It's about time some research is done to try and find the cause(s) and some healing solutions.
Thanks, Ms. M. I was surprised how many people suffer from migraines and how little money goes to the research.
I've had what the Drs. call Classic Complicated Migraine since I was 7 years old. They were debilitating headaches. The last 15 years or so I've not had a headache, except the garden variety kind. About five months ago I started getting the tingling in the fingers and the aura again, but not the migraine. Then about 6 weeks ago, I got the aura and just a 'normal' headache. I've tried several medications, none of which make much of a difference. According to some MDs, this is not unusual for older people who have a history of migraine. I did have an MRI and nothing abnormal showed up there, so I sleep easier. I have a family history of stroke, so that is always on my mind when one of these
aura incidents happen.
That's very interesting to me, Bayside. Gives me hope that my migraines will go away. My mother had them and hers went away. My sisters had them, too, and as far as I know they've gone or diminished. Our father had a stroke--something to keep in mind.
I should start making a list of the things I want to tell these doctors. Apparently they spend a lot of time on the initial interview, getting family history and health info.
Am catching up on posts.
I've had spinal taps. Uh, yeah, I handle a LOT of pain and I'm not sure I'd volunteer for another one unless good knockout meds were involved.
A number of my friends have had migraines (hummn, pretty sure I am not the x-factor in this equation!). I, thankfully, have had bad headaches that aspirin can't touch, but I wouldn't classify them as migraines. However, every last friend has told me that various things seem to help a bit, but the ones who have tried beta blockers have ALL had their migraines cease. Finito! One gal had had them for decades. As soon as she went on BB's for slightly elevated blood pressure, the migraines stopped. It wasn't the BP that was the issue, she isn't taking enough of the med to seriously drop her BP, but it did the number for her head! Numerous others have said the same thing.
Obviously, I'm not a physician, just passing along the info from several friends who have traveled the painful path of migraines. Talk it over with your docs to see if it is right for you. Am just sharing because of the total relief everyone I have spoken with has achieved, which seems so simple. Then again, if it solved EVERY case, I would assume they would have made a much more whiz-bang version of beta blockers so they could charge $100/pill for said relief!
Good luck!
They could get $100 a pill for it if it was a surefire cure, Trish. But I haven't tried beta blockers and will be asking my doctor about them. I'm now armed with a little list I didn't have before.
When Imitrex first came out, I think they WERE $100/pill...and yet, Viagra is still covered by insurance? I digress....argh. The good news is, most BB's don't cost much and you don't have to wait to be in pain to take them!
Hope there is a pain-free solution for you!
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