My daughter suffered SAH two years ago and suffers chronic headaches at levels of 6-8 daily. She is about to have Botox for pain relief and was curious if anyone else has had this done and how did it work?
I wish her every bit of luck with the treatments. I had three aneurysms and a SAH five years ago and suffer the headaches as your daughter. I just tried Botox 2 1/2 weeks ago and had a terrible allergic reaction to the injections. My eyes took the worst hit. My doctor said the affects would wear off in two weeks, and for the most part, she was correct. Sadly, the Botox did nothing to help my headaches.
When I first looked into the treatments, I posted here just as you did and there were people who had very positive responses. I think my troubles are pretty rare.
I hope your daughter finds relief. The endless pain is difficult to bear every day.
Julie
I used Botox twice for cosmetic purposes and had severe headaches and flu-like symtoms for 3 days afterwards. Warning- Headaches are a side effect of Botox which is , in fact , botulism. ive found it ironic that its now being advertised and used extensively for treating headaches! The botulism paralyses muscles which is why you get that expressionless " Android " look if you use too much on your face.LOL!
I know one friend who has had positive results with Botox for Migraines. But for me, its not an option.
Look up Trudenta.com for another approach to neuro-muscular headaches. I’m doing that now with very positive results- Post Craniotomy and unruptured Annie. My headaches have been reduced by 80%.
You may have a dentist in your area thats trained to use that approach. AND its non-invasive.
Have had 8 brain surgeries and suffer from extreme pain. Botox did nothing and hurt like a mother going in…I don’t recommend it.
I've had Botox injections 3 times, for vanity reasons, since my SAH 10 months ago with no ill effects at all. I would advise that you go to plastic surgeon or other medical doctor as opposed to a nurse or dentist.
I have also had Botox for neuropathic headaches. Same deal as your daughter. I had my SAH three years ago and have had a headache ever since. I get Botox four times a year and it helps to a small extent but it won’t be a “to da you’re healed” thing. It takes three or four times to notice anything.
It is not botulism but a synthetic form of botulitim. It’s not the cosmetic kind either. While it may cause a rebound headache, I’ve had that happen two times, they don’t last the entire three months. I get 32-36 shots on forhead, traps, neck, temples, and skull. It barely hurts going in most of the time.
No personal experience of this, but it sounds like a good use for Botox! I wish her all the best. I did suffer bad daily headaches for quite a few months after my discharge from hospital, but in my case they gradually backed off.
I would just reiterate that she is getting this done through a neurologist who is trained in using this type of Botox for migraine headache pain relief.
I am also, empowered is the only word I can think of, to hear there are other people who still have a bad, constant headache even years after the initial SAH, aneurysm and treatment. I find that my doctors all seem amazed that I am having so much head pain as a result of my aneurysms and treatment.
Does anyone else on this comment thread meet with such astonishment from their doctors?
Cindy, please let us know how your daughter does with her treatments. My neurologist only sees people with headache pain and she has found the Botox treatments to have helped about 30% of her patients with at least some level of relief.
Yes, unfortunately folks are often amazed. I am treated by some doctors like this is irregular (like I am part of the 1%) although I have found good doctors that are willing to try to treat! My surgery was in September 2013. Botox has been recommended but despite the pain I have I am still very afraid of this treatment. This post has helped me hear about some.folks trying it. So, thanks for this
I had surgery in March 2012 for an unruptured aneurysm. …10 hour surgery for clip, ICU for 10 days then another week in the hospital… I had a traumatic brain injury prior to the surgery so things were complicated and since the surgery I’ve had severe headaches 7-9 pain level everyday 24/7. I’ve tried just about all medicines for treating headaches and had horrible side effects, allergic reactions and ER visits. I had 32 injections of botox. It didn’t do anything to stop the pain and I was so sick from the botox I just couldn’t go through with another round. The pain management doctor wants to try a trigeminal/mandibular nerve block with possible radio frequency ablation. That maybe something good to discuss with your doctor as well. My neurosurgeon said my headaches are from how my body responded to what it had go through. I still have hope for a way to at least reduce the pain. I’ve been on the comprehensive elimination diet for almost 2 years. I honest think the body heals in its own way in its own time. I hope your daughter finds relief.
~Roberta
I’m scared to death to try Botox. I think it’s to soon n not enough proof it will do the trick. All of us still have migrains. Floricet helps mine very well
I believe each and everyone of has a DIFFERENT experience…so in my opinion …your daughter should give Botox a try and see what it does for HER…wishing her the best of luck!!
I have had success with Botox injections, post SAH in February of 2014. I have them done by my neurologist. Can be done every 3 months. My injections take a week or so to start feeling the effects. I must say that I still get headaches but I have fewer auras, which is great for me. I agree with Joy when she said that we have our own experiences. We are not all cookie cutter but we can also learn from other survivors positives. Good luck!
My annie was discovered while investigating extreme light sensitivity and pain that mostly feels like it is from squinting due to the light problem. The annie is at the junction of my ophthalmic artery, right beside the optic nerve. Every doctor has said they are unrelated. I started botox a year ago, since none of the drugs I tried helped. It does take it down to a dull roar. I don't have episodes of severe pain, just a constant muscle fatigue sort of pain. The injections didn't hurt on the non-involved side the first time, but terrible on the side that is already in spasm. On other occasions, they have hurt all over. The migraine ones are given in over 30 different spots on the head, as opposed to less than a dozen for cosmetic reasons. Mine are done by a neurologist.
I got a PED put in the annie in January. I have had one botox treatment since, and it certainly wasn't pretty, due to the blood thinners. The doc put lots of pressure on my forehead to stop the obvious bleeds, but I had some on my scalp that neither of us knew were bleeding until I left the office and scratched my head. Each place where a needle went in my forehead had a small bruise.
So far, I'd have to say everyone was right. I won't know until July or so if the annie has been shrinking like it should, but I can say so far, treating the annie hasn't treated the pain. Anyway, although the botox hasn't cured me, it has made the constant pain more bearable.
I had headaches for another unrelated health issue, they worked for me. The injections itself hurt when being administered, but it did worked. Within hours of the first injections, my headaches were gone. We did monthly for 6 months, then went to 2 months, then three months, then four. When we went to 5 months, I forgot my appointment, so it went to 6 months, my headaches came back. We did every 3 months until I had surgery for an aneurysm, to this day, I remain headache free without injections for 4 and a half years now.
I have suffered chronic migraine for 20 years. I have had ruptured aneurysms and clippings. Last year we found a new aneurysm. But I have continued with these horrific migraines, a lot of them were for a week or more at a time. We tried so so many treatments, nothing helped a lot worsen them. In the last year I tried the botox treatment, every 3 months. At first it was hard to tolerate because you can feel so horrible after you get your injections ( can get headache, sick to stomach and neck and muscle stiffness) But it does pass after a week or so, then you start to feel good with less migraines through the 3 months. Each treatment gets easier and I have felt better. I am going to have my 4th coming up end of the month. Doctors say to please give it at least 3 treatments so you can see improvement. I have seen great improvement in 3 treatments. I am so thankful for this treatment. I have a lot of my life back. You have to suffer some at first but it is definitely worth it in the long run. Experience is definitely different for each individual. The bad symptoms also have lessened with each treatment which has been great.
Best of Luck for a head pain free life for your daughter!
After spending the past 5 years trying every combination of medication and continuing to have chronic headaches I am set to try Botox next month...I am at the point that I will try just about anything!
I get what I refer too my "mega nasty" headaches 2 or more times a week where I have to really ask my self "is this it, is this another rupture?" It scares the life out of me, these headaches last 24 hours and can not be stopped nor have I the doctors found anything to make the pain during one of these more manageable. Oh how I wish there was a solution even if it was temporary.
I am not sure if any one else experiences thease but I would love to know what if anything you have tried!
I haven’t had any luck with Botox.