Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Botox & Ch...
        
(Message started by: firecracker7481 on Mar 4^th, 2007, 2:30am)

Title: Botox & Ch...
Post by firecracker7481 on Mar 4^th, 2007, 2:30am

Ok as previously mentioned...My neuro got me started on the Medrol dose pak which has been great thus far....I have not had a single attack since starting but I have had shadows...but I have been able to keep up with my daily routine and it has been great!!!

However, he is now recommending currently that I do a botox treatment... He was telling me that is a new trial that seems to be having a lot of luck in regards to treating CH??? Part of me is extremely skeptical as I am 25 and have no need for botox...but if it will keep me from having another 6 weeks of my life disappear, I would be willing to do just about anything...

My other big concern is how my HMO would be able to cover it...If insurance refuses to pay, it would cost me 425 for the treatment...

Any thoughts on the subject would be greatly appreciated!!!

Title: Re: Botox & Ch...
Post by chewy on Mar 4^th, 2007, 7:25am

Ask him to show you the results of that trial.

Title: Re: Botox & Ch...
Post by Paul98 on Mar 4^th, 2007, 9:05am

I would be very skeptical of botox working. It is a "local" treatment meaning it isn't going to have an effect inside the head unless it is placed there and I would not let any Dr. inject potent neurotoxins within my brain.

As Chewy said, ask for trial results.

-P.

Title: Re: Botox & Ch...
Post by kayarr on Mar 4^th, 2007, 1:01pm

If I am asking a redundant question I am sorry. My work hours are long and I have a lot to do and not as much time to wander through the archives as I'd like.

Would something like Botox work as a pain signal disruptor? Kinda like a spinal block during labor. Is there such a thing that could be strategically placed at the beginning of the nerve line? Or do the nerve receptors pick up signals randomly and not in a line like electricity?

Title: Re: Botox & Ch...
Post by firecracker7481 on Mar 4^th, 2007, 3:43pm

From the research I have done along with my friend who is a neuropsychologist, it appears that it reduces the inflamation of the nerves along with paralizing the muscles surrounding the nerve thus alleviating the muscle/nerve irritation "causing" the pain...

All of which makes sense in theory with my throbbing temple...it is not injected into the brain but the muscles surround the agitated areas of the h/a which for me would go up the back of my neck the bottom of the scalp through my temple....

All n All it is definitely a scary thought...but the research I have seen only shows about a 50 -65% rate of helping but then again...that seems all that any treatment can do...

Title: Re: Botox & Ch...
Post by vietvet2tours on Mar 5^th, 2007, 11:37am

Some oxygen might be in order

Title: Re: Botox & Ch...
Post by Bob_Johnson on Mar 5^th, 2007, 1:01pm

Cephalalgia. 2002 Nov;22(9):699-710. Related Articles, Links

Treatment of headache with botulinum toxin A--a review according to evidence-based medicine criteria.

Evers S, Rahmann A, Vollmer-Haase J, Husstedt IW.

Department of Neurology, University of Munster, Munster, Germany. everss@uni-muenster.de

The aim of this review is to evaluate the studies available from reference systems and published congress contributions on the prophylactic treatment of idiopathic and cervicogenic headache with botulinum toxin A, and to classify these studies according to evidence-based medicine (EBM) criteria. The studies were analysed with respect to the study design, the number of patients enrolled, the efficacy parameters, and the significance of results. We used the following classification of EBM. I: randomized, controlled study with sufficient number of patients; II: well-designed, controlled study (or randomized, controlled study with insufficient number of patients, no exact diagnosis, missing data of botulinum toxin A dose); III: well-designed, descriptive study; IV: case reports, opinions of experts. For tension-type headache, two studies were found with negative evidence of I with respect to the primary endpoint. There are about as many positive as negative studies with evidence of II or III. For the therapy of migraine, one study with both negative and positive evidence of I, one in part positive study of II, and three positive studies classified as III are available. Two studies on cervicogenic headache with evidence of II and III are contradictory. In addition, we found several positive case reports. For patients with cluster headache, there are positive and negative case reports. We found one positive case report for the treatment of chronic paroxysmal hemicrania. As a result of this analysis, we consider no sufficient positive evidence for a general treatment of idiopathic and cervicogenic headaches with botulinum toxin A to date. Further studies are needed for a definite evaluation of subgroups with benefit from such treatment.

Publication Types:
Review

PMID: 12421155 [PubMed -

Title: Re: Botox & Ch...
Post by Gator on Mar 6^th, 2007, 3:49pm

There's not a lot of research out there on botox and clusters. I'd also like to see the results of this "new trial." So far, what I have found shows it to be a crap shoot with the odds against you. Here's one on Botulinum Toxin B:

Botulinum Toxin Type B for Refractory Cluster Headache
Lawrence Robbins, MD, Director, Robbins Headache Clinic
Posted May 2002

http://www.headachedrugs.com/archives/botulinum_toxin_typeb.html

Quote:

SUMMARY OF RESULTS:
For chronic cluster, BTB was ineffective for 3 patients. Moderate relief was obtained by 5 of the chronic sufferers, but this was short-lived in 3 of these patients. Complete resolution, with no recurrence, was reported by one patient.

There were 4 episodic cluster patients. Three experienced no relief, while one reported moderate relief that lasted the duration of the cluster cycle.

It may be something to try if the standard therapies do not work, but my first shots would be with the more tried and true and working my way to the more obscure stuff as things fail.

As far as your age or your cosmetic need (or lack thereof) for botox - that is not an issue to consider. We are talking about treating CH, not wrinkles. Don't let vanity get in the way of pain relief.

Title: Re: Botox & Ch...
Post by EDHASFORDS on Mar 7^th, 2007, 3:15pm

BOTOX

I have had one treatment! It worked for about 2 months! Tomorrow, I go in for my second! I will keep you posted!

Eddie

Title: Re: Botox & Ch...
Post by froggy on Mar 7^th, 2007, 9:43pm

We just talked with our neuro about the botox (along with a few other options) and bottom line is $900 is a pretty hefty price tag for a shot in the dark.

He's claiming his best result comes from a patient who only needs a shot once every year and 1/2.

From what he explained, the Botox is suppose to deaden the feeling (paralyze if you will) the area where the pain occurs on the head.

Not for us.

Title: Re: Botox & Ch...
Post by EDHASFORDS on Mar 9^th, 2007, 2:37pm

I promised a follow up after my Botox Treatment yesterday and I must say (so far so good)! Not even shadows! I know many of you will remain septical as I do until I have had several weeks of being pain free!
By the way, my insurance is paying for it! Treatments every 3 months!
I promise not to over amp my progress as that will not help anyone!
[smiley=cool2.gif]

Title: Re: Botox & Ch...
Post by Gator on Mar 9^th, 2007, 2:59pm

No one here is going to begrudge you some pain free time. It's exciting to hear of someone else finding something that works for them. There is always a degree of skepticism, healthy or otherwise, when someone talks about something new or different. Sometimes, I think we tend to maintain a degree of skepticism as much as a defense mechanism as anything else. Kind of like, if you don't have great expectations to begin with, you wont be as disappointed when it doesn't work.

So, how was the Botox done with you? Where were you injected, how much (if you know), any side effects that might keep someone from wanting to do this, just give us a basic run down on your experience with this, if you would be so kind. Every little bit of knowledge helps.

I hope this is your magic bullet and that you remain pain free.

Title: Re: Botox & Ch...
Post by EDHASFORDS on Mar 12^th, 2007, 4:31pm

Sorry for the delay, I just got back on line!
To answer what it was like, the simple truth is, not very complicated! The injections were around the base of my neck, temple, over my eyes and the count was 25 total!
The pain from the injection was no worse than a Imitrex injection! Except that it was through thinner skin.LOL
So far as any Clusters, I have not had one since the treatment! A few times I had a little pressure or Slight shadows but I attributed that to working in my yard!
And putting in a over the range micro!
If I did any manual work it sometimes would trigger clusters!

It's been 5 days and the Jury is still out! But no pain since the treatment tells me something!
[smiley=cool2.gif]

Title: Re: Botox & Ch...
Post by LeLimey on Mar 12^th, 2007, 4:47pm

Hi Ed,
Can you find out if it was injected into the Occiptal Nerve area? (at the back of your neck)

That would be of interest as nerve blocks ARE given there as a CH treatment but aren't always effective. I think a large part of whether it works or not (the GON injection) is based on the skill of the person injecting and it sounds very much as though this is the case with your doc.

Actually, out of interest if you get the opportunity can you ask if he gives Occiptal Nerve Block injections too?

Thank you!
Helen

Title: Re: Botox & Ch...
Post by UN solved on Mar 12^th, 2007, 4:55pm

None of my neuro's thought Botox would be beneficial to a CH patient.

UNsolved

PS. Ed, were there any steroids in any of those injections ? Goodluck !

Title: Re: Botox & Ch...
Post by EDHASFORDS on Mar 12^th, 2007, 6:32pm

I will try and get an answer on the Optical nerve injection! I do believe that the way the Dr. moved skin on the back of my neck was a good idea he was looking for something!
Also, their were no Steriods!
[smiley=cool2.gif]

Title: Re: Botox & Ch...
Post by Gator on Mar 12^th, 2007, 10:38pm

on 03/12/07 at 18:32:40, EDHASFORDS wrote:

Occipital, not Optical. Thanks for the updates and information.

Title: Re: Botox & Ch...
Post by EDHASFORDS on Mar 13^th, 2007, 1:41pm

Thanks for the correction!
I have trouble with big words! LOL [smiley=cool2.gif]

Title: Re: Botox & Ch...
Post by Karla on Mar 14^th, 2007, 6:07pm

I was told sometimes it can take 2 or 3 x for it to kick in and work. I have had it done several times. It works to prevent my migraines but does not do anything for ch.

Title: Re: Botox & Ch...
Post by ndshrubs on Mar 14^th, 2007, 7:10pm

on 03/12/07 at 16:47:24, LeLimey wrote:

Hi Ed,
Can you find out if it was injected into the Occiptal Nerve area? (at the back of your neck)

To respond to LeLimey's question, I've found several references to the use of botulinum toxin (A and/or B) being injected into the neck with a goal of affecting the occipital nerve, either through proximity or via a "blockade".

There is currently a clinical trial under way in Norway (Phase II) testing the "blockade" style. Readers should note that the intent of the treatment is for cervicogenic headache (steming from the neck). The following paragraph was excerpted from the website address to follow:
"Botulinum toxin injection in muscles have for several years been used in conditions with pathologically increased muscle activity, such as spasticity and dystonias. Gradually, it has also been used in many pain conditions, among them headaches. One case history (5) and a randomized placebo controlled, double-blind study (6), have shown effect in cervicogenic headache. The latter study had some methodological weaknesses, since it was small, only 26 patients, and the placebo group had prior to treatment only half as much pain as the group receiving botulinum toxin treatment. In addition, pain was not registered daily, but only before (prior) treatment and after 3 or 4 weeks. A review considers the documentation on treatment with botulinum toxin in idiopathic and cervicogenic headaches to be inconclusive (7). "
http://clinicaltrials.gov/ct/gui/show/NCT00184197;jsessionid=7DA995B51D714A481B09A3DB4BF19DCD?order=21

Further, a small scale study in San Antonio attempted to inject botulinum toxin near the occipital nerve. From my reading of a news article on the topic, it appeared that treatment benefited 66% of cluster headache sufferers, as opposed to 50% w/ placebo. Amusingly, the article is titled "For Migrane and Cluster Headaches: Most Anything is Worth a Try".
http://www.medpagetoday.com/HematologyOncology/ClinicalTrials/tb/3295

In Germany (2004), a study was performed on Botox and chronic headaches. The CH relevant paragraph follows:

"Cluster headache
The application of botulinum toxin for the treatment of
cluster headache was published only in case reports
(Table 4 [44–46]). One author treated four patients with
chronic and two patients with episodic cluster headache
[44]. Two patients experienced abrupt pain relief, two
patients had a moderate effect with a reduction of attack
frequency, and two patients had no effect. Another study
reported four patients, of whom two had a benefit after
injection [43]. Of two patients, one was pain free after 6
days and the other was pain free after 9 days [45]. One
successful case report on the treatment of chronic paroxysmal
hemicrania was published [46]."
http://robotics.me.jhu.edu/~rothbaum/Articles%20to%20read/Botulinum%20toxin%20and%20the%20management%20of%20chronic%20headaches.pdf

Hopefully, that helps clarify some of the references to studies of CH or Headaches and Botox.

GOOD LUCK! :)
-Scott

Title: Re: Botox & Ch...
Post by EDHASFORDS on Mar 15^th, 2007, 3:42pm

Thanks Scott!

You have done your homework! I appreciate the time some of you spend in digging up the actual cases that in some people have worked good and in others , not so good!
Any time the percentages are 60% positive or better I will look very close and see if it is for me!
I never want to say anything that will cause people to jump on the wagon until it has been proven!
By the way, it has now been 8 days and no BEAST! Knock on wood!!!!
[smiley=cool2.gif]

Title: Re: Botox & Ch...
Post by EDHASFORDS on Mar 16^th, 2007, 2:47pm

[smiley=cool2.gif]
I told Lelimey that I would find out where my Botox Injection was placed in the back of my neck!
And it was the Occiptal nerve area!
SO FAR SO GOOD![flash=200,200][/flash]

Title: Re: Botox & Ch...
Post by firecracker7481 on Mar 19^th, 2007, 8:16pm

I would definitely love to try it my Neuro thinks I would be an excellent candidate however my insurance won't pay for it and at 420 a session I can't currently pay for it...so I am not now 3 1/2 weeks into my cycle and am celebrating as it appears to be winding down with thanks to the topamax...

Hopefully next time I will be able to try this and see if it will work for me...

Title: Re: Botox & Ch...
Post by Samiam on Mar 20^th, 2007, 7:23am

file an appeal. Don't let the insurance company just say no and not do anything about it. Use your appeals. Insurance companies bank on people not doing the appeals and most don't. So they win.

I'm waiting on my request now and if I'm denied I will appeal their decision. If you don't speak up then no one else will.

From what I understand once this is on your record then you won't have to go through this again when and if you cycle again. I'm also waiting to see if they will grant me more Imitrex. Right now I'm allowed 18 in 30 days this is OK for migraines but not OK for clusters.

It can't hurt to ask the worse that can happen is they say "NO"

Sami