Any other long term sufferers of migraines?

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Lorraine
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18 Jul 2008, 5:31 pm

Chiropractors treat people who experience migraines without the use of medication.



anbuend
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18 Jul 2008, 5:44 pm

KingdomOfRats wrote:
have the doctors ever offered surgery for the TN?
am have never been offered surgery,and have had TN since 2000,it's also been difficult to control with medications,yet have heard of some being offered surgery within the first year.


No surgery that I know of has been offered.

However, what they have done, is they block off the nerves. They first did some test blocks to make sure it was the right nerves, and then they used a technique called radiofrequency ablation to deaden a piece of the nerve so the signal can't get back to the brain.

This had partial success -- there was still the ongoing pain, but it was less severe, and the TN attacks vanished altogether until the nerve began to wake up again. (The attacks were when I would feel like the worst pain I've ever felt in my life was zapping through my head, it'd often come in clusters like lightning or something. Like it'd go zz-zz-zz-ZZZZAP, with the three little ones being like a buildup and then one big one almost knocking me over. And then that would repeat. It felt like the time I poured water over an electric fence without realizing it, only far more painful -- I either pass out or just go blank at the worst, I don't know which.)

I wish there was a way to do long-term numbing instead of just long-term killing a small piece of nerve. I wish this because when I have had short-term numbing, from injecting a numbing medication (usually more of it than usual since I'm under-sensitive to them) into the nerve directly, then I feel like part of my face belongs to me again. Then as the numbing wears off, it feels almost like pain has staked out a claim on it and it is like a wall slamming down between me and the rest of the world. It is very strange to me that feeling numb feels more "me" than feeling all that pain does, but it's true. (I guess because without pain I don't generally feel my face anyway unless something touches it.)

Also I am on Trileptal (oxcarbazepine), which works pretty well as well as treating the exact kind of seizures I have, along with Lyrica (pregabalin) (both of which treat both seizures and neuropathic pain -- I discovered Neurontin, originally, when it was prescribed me for complex-partial seizures and it also treated neuropathic pain that I'd had all my life before that; later was switched from Neurontin to Lyrica). Only danger is that it is probably what caused me liver problems recently so they are doing regular bloodwork and reducing my dose now.

I've had TN since I was 12, that I remember. I first experienced it while traveling, and then only in the form of attacks sometimes. And then as I got older I had permanent severe pain in that region (but not as severe as during attacks), and occasional attacks that gradually got more frequent. All of which was misdiagnosed as a combination of migraines and toothaches until last year.

Edited to add: In a time when it's very hard to be a pain patient because of doctors fearing prescribing to people who want to misuse drugs, I am sometimes relieved to have a kind of pain that is best treated by anti-convulsants and nerve blocks and other non-addictive treatments, that way I don't get the kind of treatment some of my friends do who are treated like criminals for wanting adequate pain management.


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18 Jul 2008, 6:20 pm

I've had migraines since middle school. I had tried many medications over the years but last year I finally found something that works: Amerge. I highly recommend it, it allows me to function in a way that was never possible before.



anbuend
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18 Jul 2008, 6:24 pm

A thing to note about that: There are several triptan drugs:

Maxalt (rizatriptan)
Imitrex (sumatriptan)
Amerge (naratritan)
Relpax (eletriptan)
Zomig (zolmitriptan)
Frova (frovatriptan)
Axert (almotritan)

That's roughly the order I tried them in.

Only Axert worked for me. It took trying every single one before I found it.

So if one of them doesn't work, try the others. They're all very similar in chemical structure, but for some reason some of them work better for some people than others. So sometimes you have to try all of them before you find one that works.


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ericksonlk
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18 Jul 2008, 10:25 pm

I have severe migraine crisis, this last for days, but the pain is a minor part of all picture. First I have the blinking dots in my visual field, then everything becomes brighter and I can't see very well, can't read for sure. There is some kind of movement blindness too, I see picture-to-picture movements.
Sometimes pack-man appears in my visual field as a halo of light, that resembles the pack-man...
After a hour the visual thing is fine but the pain and nausea begins, the pain takes something like 12 hours to be fine, the nausea, two days. I feel very irritated, I don't understand the things well, change color names, speak sentences without grammatical sense, everything becomes very annoying for a week.
Stress is the problem, so if I care to not take so much stress during the week, I will not have a migraine in the weekend (yes... always in the weekend)
I am fine, almost two months without a migraine.
I take Zoloft 50mg, Carbamazepine 200mg, and clonazepam 0,5mg, This medicine are for my other problems (depression, social phobia, meltdowns) but also controls my migraines. :D


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anbuend
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18 Jul 2008, 11:21 pm

Yes, I've found the pain is definitely not the worst part of migraines. My parents routinely have migraines with no pain at all, and yet have severe enough cognitive and visual symptoms as to be incapacitated. I have varying degrees of pain in mine (from none to a good deal), but even in the severely painful ones the bigger problem is usually the other symptoms.

TN on the other hand, can generate pain bad enough to make me truly fear it in the same gut-level way I'd fear someone coming at me with a powerful torture device of some kind after having just used it on me. I detest migraines, but I fear TN attacks, if the distinction makes sense. The worst migraine pain I've ever had can make me cry while it's really bad, but the worst TN pain I've ever had can make me cry just anticipating it.

I don't want to sound like I'm belittling migraines, I'm talking about distinctions within the category of really awful experiences, not outside of it. And since pain is almost completely subjective (and how bad it feels can actually depend on how bad you've ever felt) I wouldn't presume to talk about anyone else's experience of it.


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roche12
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18 Jul 2008, 11:48 pm

Ibuprofen if I think its my neck, Benadryl otherwise. Benadryl can make you sleepy which is good and have an effect almost like an antidepressant. Other then that cold cloth or icepack to the head can help sometimes. Sometimes high protein food helps, others just vomiting is a major relief.

What to use as treatment would depend on what is causing the problem. I have been getting them since I was 5, about 1 a week.

From what I understand if you dont mind breaking the law marijuana is a good way to relieve pain. Also handy that you cant overdose on it.