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        New Message Board Archives >> Medications, Treatments, Therapies 2002 >> Anyone tried Botox?
        
(Message started by: notseinfeld on Jul 15^th, 2002, 8:32pm)

Title: Anyone tried Botox?
Post by notseinfeld on Jul 15^th, 2002, 8:32pm

Read what little info there is in connection with CH and I'm quite curious to see if anyone here has tried/considered it. If you have, please post the results, good or bad and any info for further study.

Thanks,

nots

Title: Re: Anyone tried Botox?
Post by rick on Jul 16^th, 2002, 2:02am

Nots,

How you doin'? Is "therapy" still working for you?

-Rick

Title: Re: Anyone tried Botox?
Post by KarynG on Jul 16^th, 2002, 1:13pm

There is a muscle in the back of my neck that if I press on during a cluster, the pain and pressure fluctuate behind my eye. I asked the neurologist at my headache clinic to inject it with botox in an experimental procedure. He did, along with a few forehead muscles so we would know when it wears off. This is the first year that I have been cluster free since becoming afflicted. I still have the nasal conjestion (my nostil always swells shut during a cluster) and small shadows of the other symptoms but no pain requiring medication. If you would like to know anything else, please let me know.

Title: Re: Anyone tried Botox?
Post by notseinfeld on Jul 19^th, 2002, 5:10pm

Heya rick!--still doing the old therapy with intermittantly positive results. How are you?

Karyn:

Am I to understand that you only had 3 injections? I'm curious as to the amount, frequency and placement of the injections and perhaps how long the relief lasted (or is lasting).

The study group of Botox recipients apparently had 12 shots---8 posterior and 4 contralateral. The results were mixed with 1/3, 1/3, 1/3 complete relief, some relief, and no change respectively.

Any and all the info you care to share warmly welcome--the more details the better.

thanks
nots

Title: Re: Anyone tried Botox?
Post by KarynG on Jul 20^th, 2002, 2:22pm

nots,

Please bear with me. Although I have checked out this website for a couple of years, I don't normally post.
Okay, am trying to make out the doctors notes so excuse the atrocious spelling. The mistakes are mine. It says:

80 IU of Botulism toxin Type A was injected as follows
10 IU proceras = 10 IU
10 IU bilat. prontalis = 20 IU
10 IU bilatateral temporalis = 20 IU
15 IU bilat. cervical paraspinals = 30
80 IU total.

I have had a bout of clusters every year since 1996, lasting for six weeks each time with the exception of 1998 when I was pregnant and did not get them. I have been hospitilized and given numerous meds, DHE, etc. Have had oxygen and other treatments and have complete sucess with Imitrex injections every time. The reason I think the botox might be helping (hopefully optimistic, not certain) is that I have had nasal conjestion (one nostril swollen shut) a few times daily, tiny shadows and I have been waking up at night not feeling right, but not in pain. Also, so far I have not experienced a bout of clusters later in the year than the second week of August so... fingers crossed here. Okay I hope that makes sense. I don't want this to be a book, so please let me know what details you would like and I'll be glad to provide them. Oh and I am 34 years old. Take Care!
Karyn

Title: Re: Anyone tried Botox?
Post by gtarman on Jul 22^nd, 2002, 2:05pm

Everyone - I called a Dr. who does botox injections about 2 weeks ago (as soon as I heard about the possible headache benefits) and was told that they'd had no success with CH. I'm reluctant, even as bad as my CH's are, to shell out that kinda dough without some more favorable evidence of it's effectiveness. It's a sure bet that nobody's phys or neuro is gonna prescribe it so that insurance will pay!
But let's keep the thread going in hopes of some more favorable input...

Title: Re: Anyone tried Botox?
Post by rick on Jul 23^rd, 2002, 1:33am

Nots,

I'm great thanks to the "old therapy". Good to hear from you again. Would love to see an update on your "Mambo" thread, whether postive or negative, if you could.

Wanna go to the Dominican Republic next year 8)?

-Rick

Title: Re: Anyone tried Botox?
Post by notseinfeld on Jul 23^rd, 2002, 10:05pm

Will Do--Rickster. Let's get to dominica--I believe we have living quarters they with our mutual friend eh?

bottoms up!

nots

Title: Re: Anyone tried Botox?
Post by ScottL on Jul 27^th, 2002, 1:32am

I am a chronic Ch sufferer. Two years ago, I had Botox injections (Dr. Robbins, Chicago Area) and they stopped the CH cold for several months. When the CH returned, I had the injections again with no relief. Recently, Dr. Robbins told me that the injections are given at about 3X the dosage I was given before. If things get bad enough, I will try it again. The cost is probably less than all the other triptans and such I am taking and the action is local with no real risk of side effect. However, that is IF they work. I may be going in for some soon and will post + or - results.

Title: Re: Anyone tried Botox?
Post by KarynG on Sep 5^th, 2002, 1:28pm

Just an update. I had my botox injections done at the neuorology clinic on 6-12 and again on 8-28. On 8-30 I got a CH and have had one every night between 11:30 and 12:30 with the exception of last night. I started Verapamil on 9-2. I don't know if the reason I am only getting one CH per twenty-four hours(as opposed to 4) has anything to do with the botox or not but I thought I'd pass along the info. I had six weeks of shadows which I haven't experienced before so initially I thought that might be my cycle, now I don't know what to think. I am using an imitrex injection each night and they are working as usual. I've decided not to be in the capsicium trial as I can't tell whether I am in the beg/mid/end of a cycle or what and it would be hard to know whether it worked it not. All I can say for sure is that this is the only year that things have not been the same as all the previous years. Okay I'm stopping now, this is a grammatical mess, too much time with my three year old!
Karyn

Also, I quit smoking in March after many, many years. Maybe that helped a little. Who knows?

Title: Re: Anyone tried Botox?
Post by Samiam on Sep 6^th, 2002, 7:53am

Hi everyone, Yes Gtarman my neuro did do the botox and my insurance did cover it.....I've gotten I think 8 shots. 2 in each temple, the back of the neck and the base of the skull.....I also had nevre blocks done also, alone the nevre blocks didn't work but I swear the botox has helped alot, I'm also on Klonopin at night which I think also helped. I think if a neuro does the injections you have a better shot of it being covered then a plastic surg. also the placement of the shots I think matters.....I didn't get shots anywhere that could be used for wrinkel reduction.....Then again I have not wrinkles...LOL....I also used DHE Nasal spray when needed along with stadol.....I'm one of the rare ones that they can't find a preventive for so I just have to abort them when I get them.....Hope this helps.....oh I know I also used the type A botox.....Sami

Title: Re: Anyone tried Botox?
Post by Karla on Sep 7^th, 2002, 1:59pm

I have an apt sceduled in Nov. to have botox inj. done with my neuro. My insurance is covering it. I was told it could be repeated every 3 to 5 months as needed. Also I was told they would start with a low dose and if that didn't work to not be to disapointed that they would up the dose on the second one and go from there. And ajust as needed like you do on most any meds. I am not to convinced it is going to work and I hate the thought of needles on my face and head. But I am despirate and will try about anything right now. I will let you know how it goes and post again about it in Dec. or Jan and let you know how I faired.

Title: Re: Anyone tried Botox?
Post by KarynG on Nov 17^th, 2002, 2:42pm

Okay, another update unfortunately. After my last post, my clusters disapeared after a few days so I discontinued the Verapamil. I assumed that the reason I had such a different cycle (mostly shadows, few true clusters, lasting about six weeks) was due to the botox. I had botox on 6-12 and 8-28. My doctor recommended not repeating it again if I was past my usual cycle time until the following year. Well, I began a cycle on 11-11 and it started out every night between 1-2 am for the first five days and this weekend it is up to about every eight hours. The intensity is back to maximum. The last two times I used the imitrex my heart raced and skipped beats for about four hours so I was up most the night and morning fairly frightenend. It figures now that I can get unlimited amounts covered, it will probably cease to be an option. Anyway, just wanted to pass the info along, don't really know what it says about botox. If any questions, let me know. I'm exhausted so hope I got everything in here. Take Care. Karyn

Title: Re: Anyone tried Botox?
Post by dtruett on Nov 17^th, 2002, 4:12pm

See my follow up post down the page under "I have been Botoxed" the thread started by me. I have had great relief, but am not sure whether or not it was the treatment. I'll take it anyway.