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Introduction...Botox...etc

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pen
stephgood
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Post  stephgood Wed Jan 12, 2011 10:04 pm

I have been a member of this site for a while now. I am shy, I guess. I read posts, and sometimes I reply, but mostly I'm just quiet. Anyways, I was just wondering about other folks that have tried Botox. I have been getting it for a couple of years now. It has helped me greatly. It hasn't "cured" me by any means, but has greatly improved my quality of life. As in, it gave me one! In fact I was mostly resolved to the fact that I would never be having children because my pain was so bad for many years. Well, now I have a 20mo old.

I get my cycle every 3 months. It takes a week or so to fully kick in. It also seems to wear off about the last 2 weeks before my next appointment. With the FDA approval and the standards they have set, I actually get more of a dosage than before. Meaning, I get more pricks in more places! woohoo! My Neuro and I are trying to see if this has any positive effect on the longevity, and relief from the injections compared to what I received before.

I have been on disability for several years. I was pretty much homebound for a good 3&1/2 years in there. I have tried just about everything. I have been to Dr Saper in Ann Arbor and in their in patient program. I now am going to the Cleveland Clinic. I still have daily pain, but the level has dropped considerably from before Botox. I am now functional. I cannot do most of the things I did pre-migraine, but I can do some and I have found new things that I am able to do and enjoy that are just different. I rolled through a huge bout of depression and picked myself up off the floor after a few years of having migraines, and for the past 4 years things have been better.

I am wondering how many people have tried Botox, and if it worked for you. Also, like I said I have tried pretty much everything, as Botox was petty much it for me. If anyone has anything they would like to ask...well this is me opening up! Sorry it took so long.
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Post  pen Thu Jan 13, 2011 7:20 am

HI there and congrats on your "opening up"... Very Happy
I was being offered Botox in late february, but not sure it will happen now due to cuts in funding.
Also bit unsure as most of the feedback is pretty negative.

I am now getting daily migraines and a lot of the pain is in back of my head and in my neck.
They got worse as December came and I cant shift them, but no idea why.

Living on Triptans and not at all happy about that.
They are iffy in their efficacy and side effects vary.

It sounds as if you have had maybe the most positive effect I have heard of Steph.
How great is that...

Pen

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Post  Migrainegirl Thu Jan 13, 2011 4:55 pm

Hi Stephgood. Have to say I love the picture. What a cutie.

So glad to that you were able to find such good relief with the Botox.
My understanding is that it works best for people who's migraines are centered in the forehead.
It did not work for me, but mine tend to be centered in the back of the head or behind one eyeball. The trigger point injections did not work for me either, so I guess I'm not a good candidate.

But it's good it is working for you. It seems like different things seem to work for different people and they have no idea what will work for whom.
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Post  pen Thu Jan 13, 2011 5:08 pm

Is that right Migrainegirl, the forehead? If so, that's no use for me anyway.
Mine tend to be everywhere but there.

Back of head, occipital, and one side or other, usually on brow bone.
But forehead, never.....thanks for posting that...

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Post  sherri b Thu Jan 13, 2011 5:47 pm

Hi Steph,

That is awsome news! And glad you opened up and shared.

I tried the Botox 3 times, I had them injected all over my scalp, back of my head, and my hairline on my forehead, all it did was give me a terrible stiff neck. So my neuro figured no sense putting me through that anymore.

I also had nerve blocks done all over the scalp, basically the same places as the botox. It was a combination of Steroid, and Anethestic, it didn't work either.

Glad it worked for you.
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Post  Migrainegirl Thu Jan 13, 2011 6:04 pm

I could not find the original article I read, but in the research they included only people who had migraines in the frontal region and excluded those who had prior neck injuries from the trial.

The below is a good review of the Botox approach, including discussion of research that finds it does little better than placebo in some studies. BUT there is also discussion that it seems to work well for some people and not at all for others. Second link to study on these differences is really interesting. It talks about it helping more for "imploding headaches" than "exploding headaches". I have never heard of this differentiation before.

http://www.relieve-migraine-headache.com/botox-for-migraine.html

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1831831/
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Post  jwar Thu Jan 13, 2011 7:35 pm

I've heard the headache differentiation before. Mine are definitely imploding headaches. It's like someone's claws are boring into my skull.

I am waiting for my neuro to finagle my insurance approval for Botox. I am hoping it comes sooner than later.
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Post  stephgood Thu Jan 13, 2011 8:15 pm

The Botox is definitely a last resort for me. There was just nothing left to do or try. I know how odd that can sound, but I am sure you folks understand what I mean. When you say that to a regular, never had a migraine person, they say something like, "Did you try Imitrex?". I am always thinking...what part of I have tried everything don't you understand?????

Botox had been suggested to me several times in years previous, but I could not afford it no way no how! So I finally had the coverage and when I tried it, it seems to help. Now...it HELPS. I still have constant daily pain, BUT I can tolerate this much better. I was at a 9-10 daily for over 3 years. During that time I was basically a Hermit (-I prefer that to shut-in, it sounds better to me Wink ) I gained well over 100lbs, mostly due to medication usage and inactivity. I have since lost the weight...well I did!... but then got pregnant! So yeah, but thats ok! Smile

I know a lot of what you all are going through. You feel hopeless, scared, nervous. You second guess yourself. Dr's can be jerks, and then you just feel lost... I had a bad bout of depression for a while. My life went waaayyy downhill. It took my Husband leaving for a week for me to look in the mirror. Not just the mirror on the wall, but the mirror to my soul. (way deep-sorry, but it is the only way I can put it) We both made changes. I had become someone else while I was trying to deal with this migraine stuff. Little by little I re-claimed my self. I was able to salvage much of who I was, and also learned more about who I am and who I want to be. I do not want to be "migraine girl" (no offense to whoever has that screen name), but I was sick of that being the only question people asked me. I had become a condition that was pitied, and not a person who had other interests than migraines! Since that discovery, I heave great relationships with DR's and have made a few blush because I just put it out there. That mirror was a huge thing for me.

For a long time I lived in fear of the migraines. I eventually forced myself to get out of bed everyday and take a shower and get dressed. Then I got a little part time job, and made them well aware of the situation. I wanted to quit the first night, and the second, and every night I worked for the first month. I had lost soooo many jobs before, but then I realized I was waiting for it to happen, and I quit waiting for it. I had that job for 2 years. It was rough, but it also helped me so much. I hadn't realized how much I was missing life, and human interaction. About 6 months before I left the job, I started the botox. So that is it in a nutshell. I may make all of this sound easy, but it isn't. I will admit though, every little piece of me that I re-claimed was a huge victory in my esteem, and outlook about the hopelessness I was feeling about my situation. I hope that something in this LOOOOONNNGG reply can maybe help someone who is struggling so badly they feel lost. It is a horrible way to feel.
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Post  sherri b Fri Jan 14, 2011 4:26 am

Steph,,

You have quite a testimony! I appreciated all you had to say.

I understand the part about, people suggesting Imitrex etc.... they just don't get it, and I hate to keep saying, tried it, tried it,,, they have no clue all that we have tried, including some very dangerous drugs, it's what we do in such a hopeless state!

Glad you "found yourself" Blessings to you girl! You are a fighter!

Hope the Botox continues to help you.

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Post  Guest Sat Jan 15, 2011 8:21 pm

i am glad i read your post. and that you posted. you described your pain as someones claws boring into your scull. i have never heard it worded that way before. that describes mine also. i was beginning to wonder if mine were actually migraine. does it also feel to you as if you must have dents in your head where these pains are....do you have other types as well..i do. i have explosive as well. g

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Post  sherri b Sun Jan 16, 2011 6:36 am

Gail,

I feel so bad for how you are suffereing so!

I have the same symptoms as jwar describes too. I also have other kinds of pain, I believe they are all migraines,

Recently I have even felt what I think might be some mild "cluster" headaches, boy, I hope they go away, they are tormenting from what I hear. I do not want something like that to start.

I hope you are feeling better soon.

Will say a little prayer for you today.

Sherri B!
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Post  jwar Sun Jan 16, 2011 8:27 am

Gail,

I often feel like I must be having cluster headaches, but in my occipital region instead of my eyes. Granted, I have never had a cluster headache and this is just a train of thought I have some time. But if you ever google cluster headache pain descriptions, my pain matches it quite well. They are often described a bit differently than migraine symptoms. My neuro knows that I have migraines but he isn't fully convinced that they are all that I have, because he finds it very perplexing that the pain is always in the same location and never, ever varies.

I get what you mean about sometimes feeling like there are dents in my head where the pain hits. I guess I would describe this as someone's fingers squeezing my head as opposed to their claws digging in. If the headache gets very bad, it is accompanied by a burning sort of pain that encompasses the entire side of my face and head, all the way down through the shoulder. I very, very occasionally get a throbbing, sore-feeling headache, but 95% of the time it is the claws boring in.

I was getting a different type of headache quite often, but it went away completely when I started my medication holiday. So I guess that was what MOH felt like. It is difficult to describe it, but I can if you want.

Hope you are doing all right today,

Jayme
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Post  jwar Sun Jan 16, 2011 8:29 am

By the way, sometimes to deal with the clawing/dent/something is trying to get into my skull feelings, I try to meditate. I breathe in and imagine my skull is become steel and breathe out and imagine the steel is hardening and that the claws can't get in. Sometimes if I can focus this helps me a lot, but sometimes I'm too distraught with the pain to focus. It only works if I'm lying in the dark, I could never concentrate enough to do it if there were distractions.
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Post  JasonRPh Wed Jan 19, 2011 8:18 pm

Hi,

New to the forum. Not personally a sufferer with migraines, but close to some who are. I have been reading the posts. Very great and caring people here. The Botox post jumped out at me, since I'm a pharmacist, and just had to write an article on it. I posted it here if anyone is interested:

http://hubpages.com/hub/WHAT-IS-BOTOX-USED-FOR

Mostly I'll probably just be reading around here, if thats okay. Just looking for info to help me to help others.

Thanks,
Jason

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