Anyone who has tried botox for migraines/headaches please tell me it works???? I had a SAH 11-2-2012 experienced severe vasospams and was released from the hospital with vasospasms. Since then, I suffer from chronic to severe daily headaches and debilitating migraines. I have been to the er a few times just to break migraines that have lasted for days (I really want to go again atm but am fighting not to). My nuero doc has tried a few things and said this has worked for some of his other patients who suffer from migraines. He said it may not get rid of the migraines but may make them tolerable. Anyone with experiences with botox please let me know if it works. Thank you. VJ
Hey VJ,
I too suffer from chronic severe daily headaches. I have been on a trial of Botox and for me, I sorry to say, it has not been the miracle cure I was hoping for. My understanding is that it assists with reducing muscle tension. I do not believe my headaches are related to muscle tension and due to this is why the botox has not worked. I did however notice the tension in my neck reduce, just not the headaches. I call them 'headaches' others say migraines. Mine are mind numbing, nauseating headaches. Is that the same as a migraine? I'm not sure
I found the treatment itself to be rather painful indeed, with injections made in my face, forehead, neck and shoulders. So far I have had 4 treatments of around 20 injections each. I take my wife with me so she can drive me home as I would not be safe to drive after treatment. She wants me to stop the treatment as she finds it difficult to watch me go through it. But I don't want to reject ANY treatment without trialling it. Hell, one of them might work, so I'll trial anything. But for me botox does not work. I do however know of others who swear by it, I'm just not one of them.
Sorry
Merl
Oh Merl I am so sorry. I say it is a migraine when noise and light sensitivity is present or when the pain is so excruciating chopping off your own head sounds like a good idea. I have days where it feels like pressure like my brain is trying to push through my eye or out my skull. Then I have says where all I can hear is my heart beat in my head and it hurts so bad above and behind my ears and up to my temples. Then I have days where everything hurts on my head including my hair. Then days where it feels like something is crawling all over my head. Then of course the days where light, noise, my own heart beat bothers me. I use to have at times the feeling like my head was on fire but I can not recall when the last time I had that. At this point I am on the same page as you. I will try anything if it means it may just may take the pain away. So botox it is. My dr said 30 something shots. I hate needles so if it says anything it says I am willing to go to the ends of the earth for relief. Good luck Merl I hope you find some relief.
Merl said:
Hey VJ,
I too suffer from chronic severe daily headaches. I have been on a trial of Botox and for me, I sorry to say, it has not been the miracle cure I was hoping for. My understanding is that it assists with reducing muscle tension. I do not believe my headaches are related to muscle tension and due to this is why the botox has not worked. I did however notice the tension in my neck reduce, just not the headaches. I call them 'headaches' others say migraines. Mine are mind numbing, nauseating headaches. Is that the same as a migraine? I'm not sure
I found the treatment itself to be rather painful indeed, with injections made in my face, forehead, neck and shoulders. So far I have had 4 treatments of around 20 injections each. I take my wife with me so she can drive me home as I would not be safe to drive after treatment. She wants me to stop the treatment as she finds it difficult to watch me go through it. But I don't want to reject ANY treatment without trialling it. Hell, one of them might work, so I'll trial anything. But for me botox does not work. I do however know of others who swear by it, I'm just not one of them.
Sorry
Merl
VJ,
Just wanted to give you an update on my wife's progress with EEG Neurofeedback. As I explained in a previous message to you my wife suffered similar daily migraines. No medication worked effectively at reducing these severe migraines for over 18 years. At the suggestion of a VOC councilor she was set up with a provider that used EEG Neurofeedback for migraines. She went from 27 migraine days and she is now down to 5 monthly. There was no other change in medications only Neurofeedback. Her neurologist was surprised at her last visit that she didn't need refills of migraine medication. Going from an average of 27 migraine days down to about five and having that stay that way for months on end has been life changing for my wife and me. I have so much more of her back.
Look, there is an old saying, "you can lead a horse to water but you can't make it drink." This isn't some sham treatment. It is based on the fact that just like a stuck record album that keeps replaying the same track, so it is with patients with metal brain implants. The brain gets stuck and can't get past the presence of a foreign material and it want the body to get rid of it. The brain has a strange psychology all its own. I am so happy to have more of my wife back because she is so functional due to the EEG treatments. I'm sorry to say that no medication will restore the brains ability to get past the new implants but for some reason for which medical science doesn't understand, EEG Neurofeedback helps brain implant patients overcome a large majority of their migraines. If you would want more information I will be happy to provide it to you but you have to want to do this. Give it some thought.
Ed
Hi VJ, sorry to break this to you but you don’t have migraines so the Botox will not help, we have the same condition and its brain damage from the sah. I had to almost drag this from my Nuerosurgeon that the headaches are caused by the damage from the sah. He tells me how lucky I am to have everything functioning properly and the headaches are an after effect. Also I am told that little or no research is done to discover the source of the headaches as so few of us are alive to warrant money being spent.
I had two rounds of Botox with absolutely nothing in way of benefit. But it did hurt!
I’m sorry that I can’t give you positive news but would be interested to hear if you have found any medicines that do help.
Good luck
Simon
To All,
I am so convinced about EEG Neurofeedback and its effectiveness for post surgical SAH head pain that if I were of wealthy means I would personally pay for VJ and other members here to try about 10 sessions of this technology. Treating the brain with select micro low electrical frequencies that the brain generates itself, as it does when we are in various mental states, is so intuitive and it is why it has worked in my wife's case. A chemical means to solve a electrical problem is no solution. As Simon mentioned, if you really push your Doctor, they will admit they have no answers. The Doctor who administers my wife's EEG Neurofeedback is just as surprised that this treatment works as it does because there was absolutely to study he could read about using it in a clipped patient. There simply is no medical research to help BA survivors simply because so few survive relatively intact. The solution to this painful syndrome will come from the families of survivors, not so much the medical or pharma industry.
Ed
Hi Simon,
I currently take gabapentin 1200 mg 2 x's a day. I think that is what has curbed the fire and crawling I believe. It still occurs but nowhere as frequent as before I was taking it. I have fioricet for my migraines but I try to not use it as much as possible. It is hit or miss when it works too. So when I get to a level 8 or 9 I start taking it. If 1 or 2 pills do not work off the er I go (as this is what my nuero dr to me to do.) Then I am at the mercy of the er dr's to break my migraine. I live in the constant pain level of 5 or 6 now. It is rare for me to get to a 2 and even rarer to have no pain at all. If I forget to take my meds OMG takes forever for the pain to back down. I still question whether or not I am having vasospasms as I believe the places where I have severe pain is where I had vasospasms and was ballooned when I was in ICU. Sorry I am not much help Simon as I am still suffering.
VJ
Simon said:
Hi VJ, sorry to break this to you but you don't have migraines so the Botox will not help, we have the same condition and its brain damage from the sah. I had to almost drag this from my Nuerosurgeon that the headaches are caused by the damage from the sah. He tells me how lucky I am to have everything functioning properly and the headaches are an after effect. Also I am told that little or no research is done to discover the source of the headaches as so few of us are alive to warrant money being spent.
I had two rounds of Botox with absolutely nothing in way of benefit. But it did hurt!
I'm sorry that I can't give you positive news but would be interested to hear if you have found any medicines that do help.
Good luck
Simon
Thank you Ed. I am going to ask my nuero dr about this. It looks very promising.
VJ
Ed Dunlej said:
To All,
I am so convinced about EEG Neurofeedback and its effectiveness for post surgical SAH head pain that if I were of wealthy means I would personally pay for VJ and other members here to try about 10 sessions of this technology. Treating the brain with select micro low electrical frequencies that the brain generates itself, as it does when we are in various mental states, is so intuitive and it is why it has worked in my wife's case. A chemical means to solve a electrical problem is no solution. As Simon mentioned, if you really push your Doctor, they will admit they have no answers. The Doctor who administers my wife's EEG Neurofeedback is just as surprised that this treatment works as it does because there was absolutely to study he could read about using it in a clipped patient. There simply is no medical research to help BA survivors simply because so few survive relatively intact. The solution to this painful syndrome will come from the families of survivors, not so much the medical or pharma industry.
Ed
Even though some of you said it did not work for you I still have to try. If there is some hope it may work I am going to try it. If this does not work next step is what Ed suggested EEG Neurofeedback.
VJ
VJ, I had the same headaches as you, my neurologist said they were migraines, but there are so many types, I don’t remember which type they’re under. I was prescribed many different meds and nothing worked. He did have me start taking magnesium oxide and then suggested a SPG block with a device that goes up your nose and shoots lidocaine onto the ganglia. They used to go through the skull and I wouldn’t have agreed to that. But the syringe method is safer. My headaches all but disappeared. I told them if I could get the headaches down to a five, I would be a happy camper. I get them occasionally now but not to the point they were at. I still take the magnesium oxide. Whichever route you take, make sure you are aware of the possible side effects. Even magnesium oxide can have side effects.
And remember many of the medications we’re given can cause secondary headaches. The neurologist I first saw took me off all medication, tramadol and NSAIDs, the second neurologist and the one I still see concurred and I have to tell them when I’ve taken anything. Oh and I am allowed to use my Atarax if I need to. One thing I was taught and had difficulty learning, was to take the medication before it got too bad, as you already pointed out, it’s hard for the meds to play catch up.