Jump to content

Taking the Botox plunge


mit12
 Share

Recommended Posts

I have decided to take the plunge and try Botox to try and get my migraines under control. I feel that if I can get my migraines under controll I will be able to put a cap on my clusters. The reason I feel this way is because I have migraines at least 3 times a week and I have never had a cluster event without having a migraine. I go for my first treatment Monday, I will give updates on what happens.  

  • Like 3
Link to comment
Share on other sites

....good luck! years ago i was the patient of a research neuro that did early studies on botox for migraine. she told me they were delighted with results. had asked to be included in the study....cuz why not?.....she told me "oh sorry, it doesn't work for CH". i sadly smelled money as the market for M beats CH....sigh. keep us informed, i have heard of it helping some of us.....

Edited by jon019
  • Like 1
Link to comment
Share on other sites

  • 2 weeks later...

A little update. I was having migraines everyday for about 2 weeks before the Botox. After the Botox injections I had some small headaches but they never got bad and went away on their own. Sunday night I did have my first migraine since the Botox injections. I think it is to early to call it a success, I will keep updating weekly. 

  • Like 2
Link to comment
Share on other sites

  • 2 weeks later...

Update number 2. The botox has changed the area that my migraines hurt, they have always been very intense in the eye much like my clusters are just not as intense. Now the migraines are more spread out over and around the eye. A little less painful but still there. I had a three day migraine which is not uncommon for me and it changed sides toward the end of the third day and went away some time in the night. They say that I need to give it 3 treatments before I can make a definitive its working or not so 90 days is the target. The fact that it has changed the pain from intense eye pain to around the eye is encouraging. 

  • Like 2
Link to comment
Share on other sites

  • 2 months later...
On 5/22/2021 at 10:34 PM, jon019 said:

....good luck! years ago i was the patient of a research neuro that did early studies on botox for migraine. she told me they were delighted with results. had asked to be included in the study....cuz why not?.....she told me "oh sorry, it doesn't work for CH". i sadly smelled money as the market for M beats CH....sigh. keep us informed, i have heard of it helping some of us.....

Uff.. I know this is old but I was just set to try this out on the 28th not the actual just a consult.. Just because.. Well because I'm a chick in her 40's and I thought well maybe??? Plus if a few diapering wrinkles resulted too.. uh ok cool.. Don't care enough about the wrinkles as I hate needles so if its a no go.. its a no go but you did mention different folks different folks? So maybe?  

Link to comment
Share on other sites

....a consult can't hurt....i'd ask their experience (success?) with CH patients....then weigh that alongside your willingness to bear the out of pocket costs. various types of nerve blocks do indeed work for some, personal belief that the skill of the practitioner at least as important as procedure itself...

..have had 2 ONB's, neither of which had any effect, but don't regret the attempt. keep in mind that the potential side effects of botox are more significant...

...never tried a SPG  block...

  • Like 1
Link to comment
Share on other sites

As another chick in her 40’s I considered the Botox too, but my fear of needles outweighs the potential benefit.  I did read recently about success with Botox for CH but not traditional Botox.  Apparently they stick the needles up your nose to hit nerves in the head……the thought turns my stomach so I would probably have to be knocked out to even consider that……..but for those less squeamish it might be an option

  • Like 1
Link to comment
Share on other sites

15 hours ago, jon019 said:

 

5 hours ago, Ganuchi said:

As another chick in her 40’s I considered the Botox too, but my fear of needles outweighs the potential benefit.  I did read recently about success with Botox for CH but not traditional Botox.  Apparently they stick the needles up your nose to hit nerves in the head……the thought turns my stomach so I would probably have to be knocked out to even consider that……..but for those less squeamish it might be an option

Wow ok then.. I did not know that...And that's a bit of a game changer.. I think that changes things from a maybe to a hard no.....

 

Link to comment
Share on other sites

7 hours ago, Ganuchi said:

As another chick in her 40’s I considered the Botox too, but my fear of needles outweighs the potential benefit.  I did read recently about success with Botox for CH but not traditional Botox.  Apparently they stick the needles up your nose to hit nerves in the head……the thought turns my stomach so I would probably have to be knocked out to even consider that……..but for those less squeamish it might be an option

Hi Ganuchi,

Are you sure about the up the nose thing? I looked it up and this is what I found: The guidelines recommend Botox is given as a series of between 31 and 39 small injections. These are given under the skin or into the muscles in and around the head of the forehead, above the ears, and into the neck. The person doing your treatment will have been trained to provide Botox for chronic migraine. (Now mind you this was a not an in depth search just a quick google). I too am super scared of needles so I don't know that I could last through the series of pokes but I do tell myself that I've made it through a 6/hr. CH so maybe I could but could I survive all that spider poison ? IDK...

Link to comment
Share on other sites

It was actually a new experimental treatment specifically for CH that I was reading about that showed promise for those willing to endure it…..

 

If you google “Botox for cluster headache” you should find the article from “medical daily”…..tried to put link but it wouldn’t work (probably user error….LOL)

  • Like 1
Link to comment
Share on other sites

43 minutes ago, Ganuchi said:

It was actually a new experimental treatment specifically for CH that I was reading about that showed promise for those willing to endure it…..

 

If you google “Botox for cluster headache” you should find the article from “medical daily”…..tried to put link but it wouldn’t work (probably user error….LOL)

Oh I see. And no I don't think I could do the needle up the nose.. That sounds awful! 

Link to comment
Share on other sites

My husband fell at work a few years back and literally split his face in two…..they had to put needles in his nose to do the original sew up before the rhinoplasty to actually rebuild his nose/face.   He was SCREAMING from the pain of needles in his nose.  It was awful I don’t think I could bring myself to go for it

Link to comment
Share on other sites

2 hours ago, Ganuchi said:

  He was SCREAMING from the pain ....  It was awful ...

....and very much related....is why, besides the vulnerable feeling, i always hated being witnessed while getting hit....and why i consider our beloved supporters as having it worse than clusterheads....

.....very little to offer re needles ( i still have to keep my eyes closed). but at one point had to give myself B-12 injections. HUGE  needles that have to go into muscle. the very first time took me 2 hrs sitting on the edge of the bed....for many months after it was up to one hr.  eventually got it down to a couple of mins by using the admonition from a young lady doc, who told me: "don't be such a woosie!"......and the realization that sometimes there.just.aint.no.alternative.....

Edited by jon019
  • Like 2
  • Haha 1
Link to comment
Share on other sites

1 hour ago, jon019 said:

....and very much related....is why, besides the vulnerable feeling, i always hated being witnessed while getting hit....and why i consider our beloved supporters as having it worse than clusterheads....

.....very little to offer re needles ( i still have to keep my eyes closed). but at one point had to give myself B-12 injections. HUGE  needles that have to go into muscle. the very first time took me 2 hrs sitting on the edge of the bed....for many months after it was up to one hr.  eventually got it down to a couple of mins by using the admonition from a young lady doc, who told me: "don't be such a woosie!"......and the realization that sometimes there.just.aint.no.alternative.....

ok I suck I suck I suck soo much .. why can we go to space but no one can swap hypyos out yet ? Can I just have a new brain already please and thank you!!! They say defund the popo how bout defund the pharma!!!!!! errrr all kinds of mean!!

Link to comment
Share on other sites

2 minutes ago, BoscoPiko said:

ok I suck I suck I suck soo much .. why can we go to space but no one can swap hypyos out yet ? Can I just have a new brain already please and thank you!!! They say defund the popo how bout defund the pharma!!!!!! errrr all kinds of mean!!

Sorry Jon that was not very kind of me.. 

Link to comment
Share on other sites

.....aint no woosies in clusterville, it's an impossibility...i wasn't calling you one....just relaying what motivated me. guess ya had to be there, but coming from a tiny Russian blonde physician, with a twinkle in her eye,  i was actually amused enough to be distracted. probably her design...

...my main point was to share, since clusterheads are the bravest people i know .... somehow/someway we find the strength to do what needs to be done...

  • Like 1
Link to comment
Share on other sites

11 hours ago, jon019 said:

.....aint no woosies in clusterville, it's an impossibility...i wasn't calling you one....just relaying what motivated me. guess ya had to be there, but coming from a tiny Russian blonde physician, with a twinkle in her eye,  i was actually amused enough to be distracted. probably her design...

...my main point was to share, since clusterheads are the bravest people i know .... somehow/someway we find the strength to do what needs to be done...

I didn't take it that way. But I can be one at times:) I appreciate your share and perspective on things! 

Link to comment
Share on other sites

16 hours ago, Ganuchi said:

My husband fell at work a few years back and literally split his face in two…..they had to put needles in his nose to do the original sew up before the rhinoplasty to actually rebuild his nose/face.   He was SCREAMING from the pain of needles in his nose.  It was awful I don’t think I could bring myself to go for it

Oh my! Sorry he had to go through this!!

Link to comment
Share on other sites

1 hour ago, BoscoPiko said:

Oh my! Sorry he had to go through this!!

It was awful……we say we have seen each other at our worst……he sees me through CH and I got to sit with him for 12 hours with his face in two and then the three subsequent surgeries to fix him all up

 

The plastic surgeon told me all he could say was that he had never seen anyone so jacked up!

  • Like 1
Link to comment
Share on other sites

2 hours ago, Ganuchi said:

It was awful……we say we have seen each other at our worst……he sees me through CH and I got to sit with him for 12 hours with his face in two and then the three subsequent surgeries to fix him all up

 

The plastic surgeon told me all he could say was that he had never seen anyone so jacked up!

Wow. So glad that he pulled through and that you have one another!

Link to comment
Share on other sites

  • 2 weeks later...
  • 4 months later...
On 9/4/2021 at 8:08 PM, jon019 said:

....and very much related....is why, besides the vulnerable feeling, i always hated being witnessed while getting hit....

....very little to offer re needles ( i still have to keep my eyes closed). but at one point had to give myself B-12 injections. HUGE  needles that have to go into muscle. the very first time took me 2 hrs sitting on the edge of the bed....for many months after it was up to one hr.  eventually got it down ...

Did the botox. For abt 18 months. Gave me satanic cult eyebrows. Hated the look. Minimal relief - but cha? Ya take what ya can get.blast time was hell = no more.

Also did B12 shots. I was exact same as u, Jon. ;) now i drink the amazing Monster.. for my B vitamins. Cld i have a part time job promoting their product? LoL

  • Like 1
Link to comment
Share on other sites

On 9/4/2021 at 9:08 PM, jon019 said:

..eventually got it down to a couple of mins by using the admonition from a young lady doc, who told me: "don't be such a woosie!".

Classic! :lol: ^^^ - and indeed a real world example of how sometimes a strategically placed woosie admonition by the right person really can end up being helpful. 

  • Like 1
Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
 Share

×
×
  • Create New...