The Fabulous Migraine Underworld
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migraine makes me want to die

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Post  777Trinity Thu 05 Jul 2012, 11:10 am

Today, migraine from hell. I really have had all I can take. For the last 6 1/2 years the increase is 12 -17 migraines a month now.

The last 12 days in a row I have been in migraine.....GOD help me.

I have had everything done to fight this monster over the last 7 years, occiptal lobe injections, cervical facet injections, oblation of the gangion nerve at C-2 on both sides, that one was the worst, it just pissed off those nerve's so bad I was in agony for a year. I have had numerous "preventive" meds, abort the migraine meds and pain meds. So much for "pain management".

My "go to" meds, like Relpax and xanax won't break this monster. Did Stadol nasal spray, made me sick but migraine is still here.

I am done, if I thought I could kill myself and still get into heaven I would have done it a long time ago. Does anyone have a treatment plan that actually works??? I'll let you know if I have already tried it.
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Post  sconesail Thu 05 Jul 2012, 2:17 pm

Hi,

I'm so sorry that you are having such a rough day. I have been in your situation a few times with the migraines. I am glad you posted though. When my migraines became chronic and intractable when I was 17 my parents said, "If you ever reach the point where the window looks good, tell someone."

Have any of your rescue meds helped at all? If not, I see a few options.
Option 1: Try to get in touch with your dr and see if he has any ideas- even if he isn't there due to the holiday, a neurologist should be on call. It is possible that he could call something in for pain, have you come in for injection, or at least notify the hospital if you need to go to the ER.

Option 2: Go to the ER. I know this is a last resort, but if this is one is bad and nothing is working, then it might be time to go. They can give some meds IV that may help.

Option 3: try to rest?

My treatment plan for the bad ones is currently either a course of steroids or an IV of Depakan, benedrul, and phenergan that is given at the IV center. For bad times at home, I have ultram and tylenol 3 for breakthrough as well as klonopin. These, alsong with an implanted stimulator help keep the edge off.

I am so sorry you are having a rough time. Feel free to vent or post anytiime. Also, the options above are simply my opinions.

Pain free days,
sconesail


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Post  Cluelesskitty Thu 05 Jul 2012, 5:34 pm

Aww you poor thing, how well I can understand you Sad

I haven't had much success over the years battling the monster until I was in my late forties/ early fifties (I'm 55 now).
Once I hit peri-menopause, the M started being more daily instead of episodic, but then less intense
and more responsive to the meds.
I actually use Topamax 125mg daily as prevention and Maxalt and Percocet at once to abort an existing episode.

hope that helps.

Risa
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Post  777Trinity Thu 05 Jul 2012, 7:26 pm

Thanks everyone for your replies. Some of the meds I have already tried that seem to be working for you. Some of the preventatives I tried had harsh side effects for me and mean ones that I could not live with on a daily basis.

The other aspect is that I am allergic/intolerant of most pain medication, so finding a couple that work has been a challenge.

The vasoconstrictors normally work, however I have Ventricular Tachycardia, a heart condition (sudden death syndrome) so I am already on borrowed time and each time I use something like Relpax, Frova, Maxalt etc. I increase the chance that my heart will stop beating.

Right now I use Relpax about once a week, the rest of the time I try something else in my arsenal Smile

I really do not think the medical community is doing enough research on Migraine. It is a death sentence and most people who have severe migraines have a life expectency of about 10 years. The Neurologist I went to (one of many) just last year said my risk for stroke, brain bleed and coma are off the charts. That diagnosis in his opinion applies to migraine sufferers of over 10 migraines a month.

The whole thing stinks really, I know there is an answer to this, a treatment that would really work...someone has it.
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Post  milo Thu 05 Jul 2012, 8:14 pm

Hi 777, welcome to the underworld. I'm sorry to meet like this. It's so frustrating and I totally understand wanting to die. It's a sad reality some times for us. I'm having the same thoughts right now....just hate it when it gets so out of control and nothing seems to work. There are so many different combinations of treatments to trial but at a time like this it's hard to even think about trying another round. Hang in there!!!
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Post  777Trinity Fri 06 Jul 2012, 2:25 pm

Thanks Milo

I just needed to vent I guess...it does get challenging when "the Monster" comes and wipes out 12 days in a row...ugh. I can't plan anything, ever and really know for certain that I will be able to do it.

I hate feeling like such a loser. This thing has ruined my life, stolen my dreams, I had to withdraw from Seminary about halfway through my M.A. because of the migraines in 2007. I hate leaving anything undone and everything I do manage to do, I want exactly right. Migraines and my personality are not a good fit and causes me to feel anxious and stressed, of course migraines period are hell for anyone who has them.

I appreciate that this "Underworld" is here. I can't really tell people how I feel emotionally or physically, no one here really can...you'd lose "friends" fast.

Anyway thanks for stopping in Milo, hope you are feeling okay today.
777


Last edited by 777Trinity on Fri 06 Jul 2012, 6:04 pm; edited 1 time in total (Reason for editing : spelling)
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Post  Migrainegirl Fri 06 Jul 2012, 4:18 pm

Hi Trinity

You at least have lots of company here. Sorry it has been so rough.

Like you, I tried all sorts of injections eith no luck. I've been unable to take an of the preventatives I've tried. They either didn't work or produced bizarre side effects, usually both. Have you tried any of the natural approaches? Vitamin D, magnesium, and bio-identical progesterone have significantly lowered my incident rate. Not a cure all, but not hurting me either.
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Post  777Trinity Fri 06 Jul 2012, 6:09 pm

Migrainegirl wrote:Hi Trinity

You at least have lots of company here. Sorry it has been so rough.

Like you, I tried all sorts of injections eith no luck. I've been unable to take an of the preventatives I've tried. They either didn't work or produced bizarre side effects, usually both. Have you tried any of the natural approaches? Vitamin D, magnesium, and bio-identical progesterone have significantly lowered my incident rate. Not a cure all, but not hurting me either.

Migrainegirl

Thanks for checking in. I am on Calcium w/ magnesium, D-3, A & E and B Complex. Haven't heard of progesterone for migraine, I will look into that. Those preventatives have some pretty harsh side effects, I couldn't do those either.

Hope you are having a day without pain. This afternoon I am finally starting to feel better....long couple of weeks though Smile
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Post  milo Fri 06 Jul 2012, 6:41 pm

I'm assuming you have heard it all, but am bringing this up just in case.... Have you tried butterbur? It didn't work for me but has been helpful for lots of people. I've only ever heard of a small handful of people who get side effects from it.

The main point of this support board is for us to be there for each other, as it is near impossible for many around us to understand what we go through. There is an awesome group of people here who have been through pretty much every single option out there. You are very welcome here and very much free to vent as much as you need to. No judgments here!
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Post  777Trinity Fri 06 Jul 2012, 8:13 pm

milo wrote:I'm assuming you have heard it all, but am bringing this up just in case.... Have you tried butterbur? It didn't work for me but has been helpful for lots of people. I've only ever heard of a small handful of people who get side effects from it.

The main point of this support board is for us to be there for each other, as it is near impossible for many around us to understand what we go through. There is an awesome group of people here who have been through pretty much every single option out there. You are very welcome here and very much free to vent as much as you need to. No judgments here!

Is Butterbur something from a health food store? I would certainly try it. I'll check into that. Thanks!
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Post  milo Fri 06 Jul 2012, 8:58 pm

Yes, it is a supplement that is definitely worth trying. You need to be on it for at least six months. I bought mine super cheap online from Swansons. Even with shipping to me here in Canada was pretty cheap. If I remember correctly you take 75mg twice a day, but I'll need to dig up my old info to be sure.
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Post  Migrainegirl Fri 06 Jul 2012, 9:02 pm

Good article here on Petodolax. That is the kind of butterbur to buy as it has the damaging ingredients taken out.

http://www.redbluffdailynews.com/ci_20997399/some-herbs-ease-migraine-symptoms?refresh=no&webredirect=&stopvalue=&stopparam=

It also talks about Q10 which I have not tried yet. Has it worked for anyone here?
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Post  milo Fri 06 Jul 2012, 9:45 pm

I did the whole combo, the high doses of vit D, the Q 10, the omega mixes, magnesium and butterbur for a full year I think. It didn't work for me and I stopped because the mag upset my stomach. I hear great things about the combo though, so totally worth trying if you can afford it. Smile
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Post  Sara79 Fri 06 Jul 2012, 11:18 pm

I tried the co-q-10 and magnesium too, and neither did me much good, now the only supplements I take are vit d and calcium, but I have blood tests showing I'm low on both.

btw- welcome trinity, sorry you've had to search us all out, but glad you found us.

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Post  777Trinity Sat 07 Jul 2012, 6:42 am

Sara79 wrote:I tried the co-q-10 and magnesium too, and neither did me much good, now the only supplements I take are vit d and calcium, but I have blood tests showing I'm low on both.

btw- welcome trinity, sorry you've had to search us all out, but glad you found us.

Sara:

Thanks for the welcome and the info! Hope you are well today! I am glad I found you all too!
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