Cervical spine botox

[Hipshot]

Here goes:

I have had 100%success with nerve blocks in my cervical spine ( occipital Facet)The problem is it only takes my screaming headaches away for a week or so. It is also a steroid which Has terrible side effects for some.

I had the standard Botox treatment years ago with no success.

I was up two weeks ago after my usual 3:30 am whammer. I have had THREE BAD ATTACKS EVERY NIGHT FOR SEVERAL MONTHS.

I had an epiphany during one of my horrible nighttime attacks after I saw a fellow clusterheads post on FB About his Botox treatment. (the standard migraine treatment)

I called my pain doc in tears and told the nurse I wanted them to give me a BIG shot of Botox in EXACTLY the same spot in my neck where he gives me the nerve block.

I told the nurse to tell the doc I don't care if it paralyses me, and if it kills me, that would be great.

The doc, who has a very busy practice, told the nurse to tell me to come right in.

The doctor shot 200ml of Botox in muscle infour different spots in my cervical spine. From the bottom of my neck up to the top at the base of my head. ( my cluster knot)

Botox takes 3 to 5 days to take effect.

The first night I had my regular hell with 3 major hits. My nighttime hits are at a kip 8 by the time I wake up screaming.

The second night I woke at my usual 12:30 with a mild hit taken away with 02 in 5 minutes.

The third nightI slept through the night completely pain free.

I HAVE SLEPT THROUGH THE LAST 13 nights in a row without any head attacks!

I have had a headache in the late afternoon for the past several days, but daytime hits are a walk in the park vs night hits.

I would give my treatment at least a 90% success rate.

Who knows, maybe a tad more Botox would make the treatment 100%. Perhaps the shots in a slightly different place.

The muscle in the right side of my neck is totally relaxed. I can feel my neck with my hand, the left side the muscle is hard as a rock while thr muscle strap on the right side is totally relaxed.

I hope another chronic will try this treatment to help verify my theory.

I can send more info if anyone is interested.

I go to bed now unafraid . That in itself is priceless!

PF wishes to all my friends.

Dan

[CHfather]

Infinite number of  :)s here.

[Bejeeber]

You've.....pioneered a new treatment....and it's seriously actually working.

That's not exactly something that happens every day. Dam snazzy!  [smiley=thumbup.gif] [smiley=thumbup.gif]

Big big Kudos to your doc for recognizing the critical nature of your CH, getting you in there immediately, and being willing to do what it takes.

[alleyoop]

Big big Kudos to your doc for recognizing the critical nature of your CH, getting you in there immediately, and being willing to do what it takes.

For sure, and of course BIG, BIG Kudos to Dan and his epiphany!  I am very, very interested in the longer term results,          but am also very impressed with the results that he has had thus far!

[spiny]

That is wonderful Dan!!

I go to bed now unafraid . That in itself is priceless!

Yes it is! [smiley=tekst-toppie.gif]

[GeorgiaLamar]

Hipshot I am glad to hear you are feeling better.  Sleeping at night without fear is a big deal.  My doctor does those botox shots but he says that they don't work on Clusters?  I will surely let him know what they have done for you.

On a side note,  I recently watched the Nat Geo Video...Alleyoop turned me on to it.  I wanted to tell you that you did a great job and no doubt that video has helped a lot of suffering Cluster Heads including me.  Thanks And Pain Free wishes for all of us.

[Bejeeber]

My doctor does those botox shots but he says that they don't work on Clusters?

From what I understand, your doctor is right in the sense that when the shots are administered in the usual, conventional location(s), they are known to be ineffective for CH, but reputedly can work for migraine.

[FunGuy]

I am just so damn happy right now for you Dan.   :-)

If there is anyone that ever deserved a break, its you.

OK, a lot do.  We all do.

But I'm still damn happy.

[alleyoop]

Amen FG, amen!!

[Hipshot]

Thank you everyone. I'm 15 nights perfect sleep.

BUT

Im still getting one hit every afternoon or evening.

Seems like I'm close, but far away from pain free.

Two weeks of sleep is worth a million dollars but I'm hoping to feel good enough to know for sure that others might benefit from the neck Botox treatment.

And a correction: I should have said NECK rather than spine.

I asked the doc to hit me in the facet joint right where he hits me with the nerve block.

He explained that Botox works on muscle, so he soaked the sweet spot deep next to bone, however it was muscle that he injected.

It's not the fix all that I had hoped for; but if there are any bad chronics about to go crazy for a lack of sleep, it is a lifesaver.

Botox may last up to six months, so I'm anxious to see how long my perfect nights continue.

[freester]

Hi Dan,

I'm glad this is working for you.  I would like to try it, but I need to know the exact locations where the injections were given.  Do you think your doctor could specify in medical terminology exactly where and how much botox was given?

Thanks a ton,

Kev

[Hipshot]

Thank you everyone

Merolamar, that's the kind of response that makes me really proud.

I didn't expect a thanks from anyone. Everybody does their part.

I continue to get "thank you"s" from all over the world.  It was filmed 3-2011

Freester, I will be delighted to get the procedure put in doctor language and get back with you.

If I could figure out how to post a pic that is on my phone to this forum, Lee Ann took a pic of the band aids. I will get her to figure it out and I will post it.

If you look at a neck: one big shot at the very bottom, where the lumbar and cervical meet.

One big shot at the very top of the neck, just above my hair line...where the scene of the crime seems to be. Cluster bump, some call it. Then two BIG shots spaced evenly between the top and bottom.

He also shot several smaller shots around the right side of my head, running above the ear ant to the temple. Then I think it was two small shots above each eyebrow. He treated the other eyebrow "so you won't look funny"

I still haven't been hit whatsoever during sleep. That goes for naps too.

I had this treatment done Thursday, one day before the convention.

Caveat : I still get one hit in the afternoon or evening. For the life of me, I can't figure out why ...but I'll take a day hit vs a night hit every effing time.

[Hipshot]

AND

My pain doctor, whos normal day consists of performing nerve blocks and stimulators from the minute he gets to work, to an hour after he closes :

He shows my treatments as cervical stenosis. Neuralgia....and Etc

Medicare always covers his treatments, but he doesnt treat me for clusters 8-) per se

Most of his procedures are done using fluroscopy. My Botox treatment was to be done using fluroscopy in my VISION , but he did it right there in the room. No versed, o r other sedative was used.

I must say, when he buried the needle at the base of my head I felt like he just stabbed the demon and I said fill that spot, that IS the sweet spot.

I ALSO MY DOCTOR (Angel) "  I'LL MAKE YA FAMOUS!?

[CHfather]

If I could figure out how to post a pic that is on my phone to this forum, Lee Ann took a pic of the band aids. I will get her to figure it out and I will post it.

  Dan (and others), I can tell you how I post photos.  I might be doing it in a very clunky way, and I'm sure there are many variations on this, but this works.

1. Join www.photobucket.com. (Free)

2. Upload your photo (or image) to photobucket. (In this case, Dan, you will have to email it to yourself first from the phone and save it on your computer, or get it from the phone to the computer in some other way (synching)).

3. After it's uploaded, double-click on the photo in your photobucket "library."

4. To the right of the photo, you'll see a heading that says "Links to share this photo."  Go to the fourth item, IMG. Left click once in the box after IMG. A yellow notice will show up that says "copied."

5. In the message space here at the CH board, either right-click and hit "Paste," or hold down the CTRL key as you hit the letter "v"  Your image will appear. (It won't appear in the area where you compose your message, but it will show up in "Preview" and when you actually post it.      . . . .        I hope.

[Vickle]

I see Dr.Robinson in December.  I would love to talk to him about doing this.  I haven't slept through the night in a while.

Thanks Dan, pfws.

[Hipshot]

Things are getting much better. No headache at all the last FOUR DAYS and no attacks at night in three weeks or so.

One situation: the muscle on the left side of my neck is now responsible for holding my head up. It has hurt and Charlie horsed a time or two. I just have to be careful and hold my head straight up as to not overuse the muscle...if that makes sense.

I painted a room in my house, big mistake 

Otherwise, 100% pain free for several days... 100% zero shadow

Dan

[CHfather]

When my neck acts up or when I'm doing something that's likely to cause it to act up, I wear one of those soft cervical collars you can buy at a pharmacy. Helps me.

[Bejeeber]

100% pain free for several days... 100% zero shadow 

Whaaa??!! That is thoroughly AWESOME. Finally your way past due karma for helping so many CH'ers on Nat Geo has kicked in.  [smiley=thumbup.gif]

These new botox jabbing locations you've innovated are becoming interestinger and interestinger. Maybe your neuro oughta do a medical journal write up or something. Or maybe Dallas Denny and some other Texans 'round there oughta try the same treatment from him. Aw DAMMIT I just remembered Denny moved and is Oklahoma Denny now. "Oklahoma Denny" doesn't have the same kind of ring to it.

[Vickle]

So incredibly happy for your pf time.  breaking out the happy dance.

[Australopithecus]

I am new here, but I wish to extend congratulations on your pain free days, Dan. From the comments, it appears to have been a very long time for you.

It seems that you knew well the dangers going into this procedure, as you stated if it paralyzed or killed you, that you accepted that risk. I would assume you exhausted any other options before reaching this conclusion. I don't wish to sound like a nervous nancy, but I can't help to express the dangers of experimentation with botulinum toxin. I don't think it's a decision that should be made lightly. There is a high amount of risk associated with high doses of botulinum toxin. It does seem to migrate to other parts of the body and to the brain. Botulinum Toxin type A does not seem to be attributed to neuron death by itself, although it's blocking of neural activity can cause adverse effects, including death.

I understand completely the desire to stop at nothing to silence the beast. But I do feel that Botox should be regarded as one of the high-risk options and I would encourage anyone interested to do research and weigh the risk before proceeding. That of course should be said for any medication, food, or even lifestyle choice for that matter.

[Bejeeber]

Austral, while I too of course completely understand and relate to the desire to stop at nothing, I appreciate your cautionary note and your advice to do some research and some risk weighing when considering this and all other CH treatments.

[Hipshot]

THEY'RE BACK

had two hits yesterday and an unusually early bad hit at 1pm today.

Has the Botox worn off?...

Double damn.

....onward throu the fog

It's been way worse

[didgens]

So is it correct to say that the Botox is causing the muscles to relax and stop putting pressure on a/some/one nerve ??? if that is the case cant your doctor isolate which of the shots and what nerve/muscle group is the culprit ??  finding the root is so very important.  just sayin maybe your doc would be willing to work with you for the sake of all to find the magic bullet as it were ?

thanks sooooooo much by the way ~!

[Hipshot]

The Botox worked for three weeks.

It quit as soon as it started.

Back to the drawing board, but very grateful for three weeks PF

[didgens]

it did SOMETHING ,, doctors need to figure out what the SOMETHING is.  Botox will wear off. the body assimilates it . thats why women of the OC have to go for regular injections. but knowing what muscle group it relaxed and relived pressure off of what neves is important.

per your first post you say 

"The doctor shot 200ml of Botox in muscle infour different spots in my cervical spine. From the bottom of my neck up to the top at the base of my head. ( my cluster knot)

"

and you state exactly where those injections were placed please ? thanks so much.