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mom2allyson0526
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New here with questions
« on: Oct 15th, 2004, 12:17am » |
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I'm new to this board and am hoping to find answers to some of my questions and get some support from people who know what these headaches from hell feel like. I'm a 27 year old woman who had my first episode when I was 19. At the time I had no idea what they were. All I knew is that one side of my face hurt, was swollen, my eye looked weird, and I would have shot myself if someone had given me a gun. It horrified my college roommate who thought I had a brain tumor or something.
I've had them on and off since then but they have come back with a vegance since I had my daughter. I went three weeks getting them every night, at the exact same time. It was horrible trying to care for my daughter--who is only 4 and a half months old--while having one of those headaches. Needless to say it was a relief when her bedtime rolled around. When I get them, it starts out with pain at my left temple and behind my eye. Then the left side of my sinuses gets congested and clear drainage starts pouring out of my nose. My face swells up, my eye droops and swells, the pain becomes so excruciating I just want to walk the floors and hit something against my head, and then my sense of balance gets thrown off. I start walking basically like a freaking drunk. If I lay down, it hurts worst. If I stand up, I can't half walk.
This went on for three solid weeks before I went to the doctor. He told me it's not a sinus infection, it's not an inner ear infection, but what he called "severe migraines known as cluster headaches." He prescribed Topamax to take on a daily basis, Frova to take when the headaches hit, and told me to get off birth control pills. I quit the pills and they quit for a while, but guess what showed up yesterday afternoon and this afternoon? You guessed it! As I told my husband, they are worst than labor. He says I say that because I've forgotten what labor felt like. If that's the case, I'm not sure I want another kid. 
Anyway---I will admit that I haven't started the Topamax yet. I'm scared of the side effects I read about. Does anyone here have experience with that drug? He says it's better than Imitrex. I don't know enough to know if it is or not. My parents called tonight and told me that they read it helps to avoid certain foods. I ate three pieces of pepporoni pizza yesterday prior to the first headache. They said a preservative in the pepporoni can trigger cluster headaches according to a medical book they have. Has anyone heard of that?
Anyways---thanks for reading and any responses. Right now I'm just getting really frustrated. Like I said, it's pretty hard to care for a baby when you feel like half your face is going to explode.
Becca
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thudpucker
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There's a shadow hanging over me.
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Re: New here with questions
« Reply #1 on: Oct 15th, 2004, 3:49am » |
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on Oct 15th, 2004, 12:17am, mom2allyson0526 wrote:My parents called tonight and told me that they read it helps to avoid certain foods. I ate three pieces of pepporoni pizza yesterday prior to the first headache. They said a preservative in the pepporoni can trigger cluster headaches according to a medical book they have. Has anyone heard of that?
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I can't say much about meds--surely others will, or you'll check out the other threads--but I've learned that a Chinese meal-sized ingestion of MSG is a guaranteed headache for me, and I read that nitrates, which are used as a preservative in such things as pepperoni and smoked meats, may trigger a ch too because they lower blood pressure. I wouldn't be a bit surprised to learn that your pizza was laced with MSG, either.
thudpucker
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BobG
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Re: New here with questions
« Reply #2 on: Oct 15th, 2004, 6:20am » |
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Quote:| He says it's better than Imitrex. |
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Comparing Topamax with Imitrex is like apples and oranges. Topamax is a preventative. Imitrex is an abortive. Different drugs, different purposes.
Quote:| I will admit that I haven't started the Topamax yet. I'm scared of the side effects I read about. |
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Side effects? Yes there may be some some. But, you won't know until you try it.
If you try it it may make the headaches go away. If you don't try it you will still have headaches.
If you are afraid to try a drug because of some unknown (to you) side effect then your headaches are not that bad (yet). Make a choice.........headaches or pain free with possible side effects.
MSG has been reported many times as a possible trigger. I don't know, I can eat anything. The only way to find out if the pizza was your trigger is to go try it again. And again.
Having to give up pizza would really suck.
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don
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Re: New here with questions
« Reply #3 on: Oct 15th, 2004, 7:28am » |
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Get a referal to a cluster educated neuro.
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kissmyglass
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Don't Mix Triptans
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Re: New here with questions
« Reply #4 on: Oct 15th, 2004, 7:47am » |
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Don is right...you need a new neuro who knows about clusters
The best thing you can do right now is read read read this site.
good luck,
Kev
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Bob_Johnson
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Re: New here with questions
« Reply #5 on: Oct 15th, 2004, 8:03am » |
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Let me "amen!" BobG.
Lists of side effects are required by the Feds and they list "possibilities" and not "predictions". Your best protection is to be aware and report to our doc if any of this side effects appear.
If your doc doesn't know the difference between Topamax and Imitrex--in terms of what they do--I would not be comfortable continuing to let him treat your clusters.
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Bob Johnson
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eyes_afire
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Re: New here with questions
« Reply #6 on: Oct 15th, 2004, 7:09pm » |
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Hi Becca,
I agree with BobG... Topamax and Imitrex serve different purposes.
And yes, it would suck to have to give up pizza.
For a few clusterheads, MSG may aggravate their CH situation. If you're really interested in avoiding MSG, you'll have to closely read food labels.
These things contain (or are) MSG:
glutamate
glutamic acid
gelatin
monosodium glutamate
calcium caseinate
textured protein
monopotassium glutamate
sodium caseinate
yeast nutrient
yeast extract
yeast food
autolyzed yeast
hydrolyzed protein
hydrolyzed corn gluten
These things often contain MSG:
textured protein
carrageenan
vegetable gum
seasonings
spices
flavorings
natural flavorings
chicken flavoring
beef flavoring
pork flavoring
smoke flavoring
bouillon
broth
stock
barley malt
malt extract
malt flavoring
whey protein
whey protein isolate
whey protein concentrate
soy protein
soy protein isolate
soy protein concentrate
soy sauce
soy extract
Also, MSG can be a natural vegetable by-product. For example, as a tomato ripens, the level of glutamate rises. Glutamate can also be the by-product of a fermentation process such as with aged cheese. The body processes artificial MSG and natural glutamates in the same way.
--- Steve
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thebbz
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Re: New here with questions
« Reply #7 on: Oct 15th, 2004, 8:39pm » |
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Steve listed all the good stuff I like to eat.  No trigger for me there, the alcohol though,stress,anything that makes me relax, fatigue,hunger...and a neuro that compares topomax with Imitrex...get another..please. 
BB
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SeVen
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Re: New here with questions
« Reply #8 on: Oct 16th, 2004, 2:35pm » |
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For me, as well as many, many others, Imitrex is the weapon of choice. Since it is not a narcotic, it is free from being addictive. It is however, not recommended for ppl who have arrhythmias or blood pressure problems.
-Imitrex pills are useless for most, since the attack is usually over by the time the pill gets into your system.
-Imitrex nasal works for most in 15 to 20 minutes.
-Imitrex injectable works for most in 5 to 10 minutes..WOO-HOO!
There are several brand names of Sumatriptan which are of the triptan type (Imitrex).
By all means necessary, get to a doctor or ER and ask them to help you with Imitrex
It also seems that from what I have been reading these last 2 weeks, that the British are quite up on the CH thing...they are especially keen on the "prevention" side of it....
Luck be with you in finding the 'magical doctor.'
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