mit12 Posted May 23, 2021 Share Posted May 23, 2021 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. 3 Quote Link to comment Share on other sites More sharing options...
jon019 Posted May 23, 2021 Share Posted May 23, 2021 (edited) ....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 May 23, 2021 by jon019 1 Quote Link to comment Share on other sites More sharing options...
mit12 Posted May 31, 2021 Author Share Posted May 31, 2021 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. 2 Quote Link to comment Share on other sites More sharing options...
mit12 Posted June 9, 2021 Author Share Posted June 9, 2021 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. 2 Quote Link to comment Share on other sites More sharing options...
spiny Posted June 10, 2021 Share Posted June 10, 2021 Nice that you are getting improvement Mit!!! Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted September 4, 2021 Share Posted September 4, 2021 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? Quote Link to comment Share on other sites More sharing options...
jon019 Posted September 4, 2021 Share Posted September 4, 2021 ....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... 1 Quote Link to comment Share on other sites More sharing options...
Ganuchi Posted September 4, 2021 Share Posted September 4, 2021 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 1 Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted September 4, 2021 Share Posted September 4, 2021 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..... Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted September 4, 2021 Share Posted September 4, 2021 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... Quote Link to comment Share on other sites More sharing options...
Ganuchi Posted September 4, 2021 Share Posted September 4, 2021 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) 1 Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted September 4, 2021 Share Posted September 4, 2021 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! Quote Link to comment Share on other sites More sharing options...
Ganuchi Posted September 4, 2021 Share Posted September 4, 2021 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 Quote Link to comment Share on other sites More sharing options...
jon019 Posted September 5, 2021 Share Posted September 5, 2021 (edited) 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 September 5, 2021 by jon019 2 1 Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted September 5, 2021 Share Posted September 5, 2021 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!! Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted September 5, 2021 Share Posted September 5, 2021 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.. Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted September 5, 2021 Share Posted September 5, 2021 2 hours ago, jon019 said: I wouldn't have been able to do the the b shots on my own I commend you. I'm a woosie!! Quote Link to comment Share on other sites More sharing options...
jon019 Posted September 5, 2021 Share Posted September 5, 2021 .....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... 1 Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted September 5, 2021 Share Posted September 5, 2021 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! Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted September 5, 2021 Share Posted September 5, 2021 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!! Quote Link to comment Share on other sites More sharing options...
Ganuchi Posted September 5, 2021 Share Posted September 5, 2021 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! 1 Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted September 5, 2021 Share Posted September 5, 2021 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! Quote Link to comment Share on other sites More sharing options...
mit12 Posted September 17, 2021 Author Share Posted September 17, 2021 Well I called the place that I got the Botox injections and the doctor that she used to give here the injection sites had to retire because of cancer. I am now looking for a different doc. Quote Link to comment Share on other sites More sharing options...
Sue mcdonald Posted January 22, 2022 Share Posted January 22, 2022 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 1 Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted January 22, 2022 Share Posted January 22, 2022 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! ^^^ - and indeed a real world example of how sometimes a strategically placed woosie admonition by the right person really can end up being helpful. 1 Quote Link to comment Share on other sites More sharing options...
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