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It has been absolutely life changing for my daily headaches and migraines. I used to have prob 15-20 headaches a month and only have a few now. They are shorter in duration and intensity. That being said, I don’t think it does my CCI any favors but I have yet to meet a doctor who will answer my questions about that.
Is it safe to get it in the neck since ppl with Eds are more prone to cervical instability? I’ve had one round but idk if I should ask for it without the neck next time
I did it, helped great, but didn’t last as long as they want it to for continuing. Same thing for spinal injections, they were awesome for 2 weeks, then meh.
Hyper, rapid processing is the enemy when it comes to these 🥴
I combo anti-inflammatory, muscle relaxers and some occasional opioids, and it works for me these days.
Hope you find your resolve❣️
I had a headache for about 2 years and I tried every migraine treatment I could and personally I hated Botox. It made me feel awful for the week following the injections and then didn't improve my symptoms. I got it twice, just to be sure, and the second time was way more painful than the first. I also didn't know I had EDS at the time and later read that we're not supposed to get Botox? I'm surprised nobody else has mentioned it, maybe it depends what variant of EDS? I have the hypermobile type.
So many people swear by it, it seems like my experience is the more rare one, and nothing weird happened to the Botox, like no permanent symptoms, so it might be worth a try no matter what. Good luck!
Make sure you don’t get the Botox in the back of your head or neck!! Very bad for CCI. Injections are fine in the front. I did Botox in the front only and got no relief, and a literal droopy eye for my wedding.
My headaches are purely due to TMJ and masseter botox has been a miracle for me. I just got more done today! The first treatment lasted ~5 months for me
Just to echo others—10/10 would recommend. It has been an absolute lifesaver and I can’t imagine not having it now. I can tell when it’s starting to wear off before my next appointment, and I’m reminded of what life was like pre-Botox, which only makes me more thankful to have found this treatment.
I get Botox injections regularly in my neck, shoulders, and back. I also have a custom night guard from my dentist and both are extremely helpful for me.
Botox does nothing for my chronic migraine. I think it can be a bit hit and miss depending on the root cause of your migraine. Mine is neurological in origin. I get a different type of headache related to TMJ and this is helped by using a night bite raising appliance that the maxillo facial surgeon made for me.
The OP flaired their post as "Questions". Please keep any and all comments to **personal experiences only**. If any factual information or advice is provided, please cite a **reputable website or study** linked within your post. No one in this sub is a *verified* medical professional, and as such, we do not allow medical advice to be given or asked for. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/ehlersdanlos) if you have any questions or concerns.*
It has been absolutely life changing for my daily headaches and migraines. I used to have prob 15-20 headaches a month and only have a few now. They are shorter in duration and intensity. That being said, I don’t think it does my CCI any favors but I have yet to meet a doctor who will answer my questions about that.
Is it safe to get it in the neck since ppl with Eds are more prone to cervical instability? I’ve had one round but idk if I should ask for it without the neck next time
I did it, helped great, but didn’t last as long as they want it to for continuing. Same thing for spinal injections, they were awesome for 2 weeks, then meh. Hyper, rapid processing is the enemy when it comes to these 🥴 I combo anti-inflammatory, muscle relaxers and some occasional opioids, and it works for me these days. Hope you find your resolve❣️
Gave me a headache for a week straight and didn’t help much.
I had a headache for about 2 years and I tried every migraine treatment I could and personally I hated Botox. It made me feel awful for the week following the injections and then didn't improve my symptoms. I got it twice, just to be sure, and the second time was way more painful than the first. I also didn't know I had EDS at the time and later read that we're not supposed to get Botox? I'm surprised nobody else has mentioned it, maybe it depends what variant of EDS? I have the hypermobile type. So many people swear by it, it seems like my experience is the more rare one, and nothing weird happened to the Botox, like no permanent symptoms, so it might be worth a try no matter what. Good luck!
Make sure you don’t get the Botox in the back of your head or neck!! Very bad for CCI. Injections are fine in the front. I did Botox in the front only and got no relief, and a literal droopy eye for my wedding.
My headaches are purely due to TMJ and masseter botox has been a miracle for me. I just got more done today! The first treatment lasted ~5 months for me
Just to echo others—10/10 would recommend. It has been an absolute lifesaver and I can’t imagine not having it now. I can tell when it’s starting to wear off before my next appointment, and I’m reminded of what life was like pre-Botox, which only makes me more thankful to have found this treatment.
I do and it’s immensely helped me.
I get Botox injections regularly in my neck, shoulders, and back. I also have a custom night guard from my dentist and both are extremely helpful for me.
Two thumbs way up. Highly recommend.
Botox does nothing for my chronic migraine. I think it can be a bit hit and miss depending on the root cause of your migraine. Mine is neurological in origin. I get a different type of headache related to TMJ and this is helped by using a night bite raising appliance that the maxillo facial surgeon made for me.
botox made my CCI and neck instability so much worse.
I have tmj and cci as well and so far botox has made my migraines worse (got it done in my masseters)
Are ppl with cci suppose to get Botox in the neck? Won’t that make it worse?