Welcome to our group @Matti! I totally agree with @Ginger_E, make sure you are doing your follow ups! I’ve never tried Botox, so can’t speak to it personally. Some of our members have reported it helps and some have not gotten relief with it. I think all of us who’ve had the migraines that come with a rupture will try anything to get rid of them. The things that help me are proper hydration and eating protein. Early on, I had two SPG blocks, the first was a miracle for me and 8 months later, I went for another, it hurt like the dickens. That neurologist had tried me on all types of meds, most for epilepsy, and nothing was working. He also had me take an OTC as he felt Americans did not get enough manganese in their diet. My body didn’t tolerate the amount he had me take and I had to keep reducing. Apparently I was still having vasospasms, which is why follow ups are so very important.
Do a search here in our group, and you will find numerous things that have worked for some members and things that didn’t. What works is all based on an individual it seems.
Good luck and again, welcome, we are glad you joined!
Moltroub
Thank you Ginger . It’s good to hear what worked for you. I will ask about Ubrelvy. I have had Botox suggested but had never known anyone who had taken it.
Unfortunately, I’m one who hasn’t gotten relief from Botox. It was explained to me Botox is a neurotoxin that stops the nerve messages to the muscle. If the headache/migraine/head pain is caused by muscle tension, then Botox may assist. The theory given to me was that we often store our stresses in the muscles of the neck, shoulders and face. By stopping the messages, this prevents those muscles from tightening and reduces the headache.
BUT, if, like me, you’ve had neurosurgery, Botox may not be the ‘Magic Bullet’ some profess it to be. During the surgical process the micro circuitry of the brain and the blood flow of the brain has been disturbed and changed. For some, these changes can be minimal or ‘easily’ manageable, but for some of us these changes can be life altering. This is not a muscle tension type problem.
Headaches are NOT a ‘one-size-fits-all’ sort of scenario. Some people can manage quite well with something like OTC Paracetamol or Tylenol and if I’m honest, that use to be me. Sure I got headaches but these were more like a niggle in the temple type headache, take paracetamol and it’s all good. Then they operated. ‘OHH WOW’ I have NEVER felt pain like it. I went through a process of elimination, if a dr suggested a treatment, I tried it. From different therapies like massage to manipulative physio therapy to hydrotherapy to acupuncture. From all sorts of medications like pain meds to epilepsy meds to heart meds to psych meds etc and of course the Botox, if someone suggested it, I gave it a go. But the pain meds seem to be about the only thing that assists, for me.
It really can be a case of trial and error to find what works for you, what may be the key for one person maybe of very little use to another, so trial them all, you never know, that one thing you think 'Nahh, that’ll never work…" could well be your key.
Best of luck with it all and please let us know how it all goes. You might just find the answer someone else is looking for.
I have headaches quite often as well. My neurologist who specializes in headache treatment has suggest Botox for headaches. I an currently taking Amtriptyline along with 3 other meds for anxiety and one for high blood pressure. Dr wants me to try Botox to get me off of so many oral meds. I’m still considering Botox. I don’t have a headache everyday but on average about once a week.
Hey Susan,
Welcome to Ben’s Friends.
It seems that the use of botox for headaches was found by accident. People who were getting Botox for cosmetic purposes had reported a decline in headache frequency. I believe that headache triggers can be numerous, for some it can be a light sensitivity, for some noise, for some it can be sleep (or lack of) related etc And for some it can be muscle tension related, in which case Botox may well assist.
If someone suggested facing north, hopping on one leg, singing Kumbaya all at the same time would help, I’d give it a go, even just as a trial. My view was ‘Well, what have I got to lose by trialling it…’ or more to the point ‘…what have I got to gain…’??
Welcome to our group @susanr! I remember the excruciating headaches quite well and like Merl I was willing to try anything. Seems we do what we can to get relief. The first few years I couldn’t get away from them and of course my neurosurgeon kept telling me to eat and hydrate. I’m one of the oddballs who don’t eat when I’m in pain, never have. It was so bad in NSICU, they threatened a feeding tube via my BH. The RNs would literally separate my food and tell me I had to eat x amount, just like my mom did when I was little. It made me laugh. I also just found out from my Neurologist’s NP that basically I’m not normal. Normally people who suffer from headaches or sensory overload, will go into a quiet, dark room and lay down. I tend to do something physical which had become a learned behavior due to my career choice. I have a couple of suggestions, ask if whatever the doc suggests can it be reversible, meaning if you try it and it doesn’t work, what harm if any can come from it? The other thing would be how long or how many will it take. We do have to weigh what we try to any adverse reactions.
Hi that’s exactly my case. Everything they’ve given me just makes me feel worse so I take Tylenol 3 times a day and at least it doesn’t affect my balance or make my dizziness any worse than it already is. Some doctors say I shouldn’t take so many and others so it’s ok.
Some of the alternatives have many more side affect. So, I figure I’ll take my chances with the Tylenol.
The concern with acetaminophen (Tylenol) is the potential liver damage. Back when they didn’t know that much about it I took muscle relaxers with acetaminophen added to it, still a common practice. I woke up in ICU m white blood cells had superseded those of someone with leukemia. Back then, early 80’s, they thought my liver damage was irreversible. I have to have it checked twice a year to this day. So please be careful…
This late reply might help others if you have experienced the same as what I have.
Clipped: 5 years ago. Left Carotid Artery behind eye. (8mm wide neck aneurysm).
I’ve experienced daily migraines after the surgery. Then I visited a neurologist who signed me up for a trial using a ‘machine’ called GammaCore vagus nerve stimulator instead of popping in pills because I am not in favor of taking pills. (even after the surgery, I only took Tylenol once).
It worked wonders (and free at the time). Soon, a year passed and my insurance won’t cover for the cost but my doctor was able to talk to them to loan me for another year, so I used it for two years. Unfortunately, I couldn’t use it when the 2nd trial expired because my insurance won’t cover for it. However, because I have recovered slowly, my migraines appeared lesser and lesser. Now five years past, I probably will have migraines when the air pressure changes abruptly.
I do not know anyone else is lucky enough to try the ‘free’ version of vagus stimulator machine (not sure if it’s one size fits all for difference pains). But if your doctor believe your headache might be migraines, please ask your doctor about it.
Greetings fellow survivor friends! This is my first post. I’m also struggling with headaches whenever the wind blows, whenever someone says something unkind to me, and whenever I have to deal with technical issues. All day, all night, intermittently.
I can’t get over how articulate you all are and how on earth you remember everything! Every time medication is mentioned, I have to get up and look at my pill bottles. And the whole time I’m thinking: Oh, yeah! I have all that going on, too!
I’m not fond of the new me since the rupture/clipping back in May 2022, but every day I thank God for another day to love my family and friends. I laugh at my wobbly walk and I curse like a sailor. I admire how all of you are handling this unfortunate situation and it’s so frustrating! My neurologist has recommended Botox for the migraines and physical therapy, so that is our next plan of action. I wish my memory would improve, but he says all this takes time. All my medical caregivers remind me that I’m among a very small number of people who have survived this, so I’m rethinking how I want to live out the rest of my life. Quality is all that matters now.
Hey DeeCee,
Firstly, Welcome to Ben’s Friends. Lots of good, knowledgeable people around here.
Headache triggers can be very individual. For me bright light, loud noise or lack of sleep or lack of food are my more common triggers. But then at times I can be sitting idle, doing nothing and all of a sudden BOOM, like someone has kicked me in the back of the head. I’ve tried to identify the ‘why’, the 'what have I done to trigger ‘this’? and when I can identify I am a little more accepting, but when I can’t…Ohh that frustration is MASSIVE. Some days I can have such clarity, it’s amazing. But then some days it’s like walking through treacle and I HATE it. I want the old me back, but the reality is that life has gone and I have to learn to accept that. That ‘acceptance’ thing is on a bit of a sliding scale. Some days it’s not an issue, but then some days I don’t want to accept ‘THIS’. The reality is I have no choice but to accept, but mentally…Ohh, that’s a battle.
Your frustration, that’s normal, well, it was/is for me and one of my biggest frustrations is my memory. My memory used to be one of my better assets. Post-surgery, if I didn’t write it down …poof… and it’s gone. I’d often joke with my wife “There’s nothing wrong with my memory…” then turn to her and ask '…but who are you again?" and it was said as a joke, but the reality was all too real. I had bits of paper all over my house with notes, then I’d lose the notes. I got myself a notebook to keep them all in one place. Your neurologist is correct when he says all this takes time. I’m not sure if things have improved as such or that I’m a little more accepting of the reality of it all and put things in place to assist.
And I couldn’t agree more. We know this because we’ve lived it too, so come talk to us.
Greeting back at you! If you could have seen me that first year after rupture, md several years after that, you’d be giggling - no strike that - it would be a load roar of laughter! I promised my neurosurgeon I would not do any research on brain aneurysms for one year and I like to keep my promises. I also promised not to cuss, sometimes I break that one multiple times, oddly I only said one swear word in ICU and the dozen or more medical folks that had filled my little room all clapped for me. They said they had wondered if I knew any curse words of which I replied I had learned more profanity working as a CPS SW than when I was in the USN😂
I think most of us who have ruptured have memory issues. We learn different methods to help, sticky notes, whiteboards, smart phones and now there’s all the smart devices that can remind one to eat, sleep and take meds! I keep a current med list on my phone and it seems I still have trouble during any type of doctor visit to get us on the same page
Walking took me a long time to walk straight -ish. I still walk to port side but not so bad anymore that I need someone between me and traffic when we go into town and I haven’t needed stitches for a few years because I ran my arm along something I shouldn’t have.
Being on a virtual community helps with articulation. When someone can write better than I, I challenge myself to improve…sometimes I have to read, and reread again to make sure it sounds right only to discover the next day my response was way off, words are nonsensical and my structure isn’t correct. It sort of jumps around as much as my brain thoughts do😂
When I write I totally have to read out loud to hear if it sounds right or okay. Another strategy…lol I am so getting used to everything now. Only a month ago, after having the rupture a year ago, I found out with working with my trainer at the gym that I have apraxia in my arms. It is very weird to try and move your arms and there is no signal going to your arms to move. I had to do the movement freely without holding onto a handle several times and then have a small ball in my hands then do the movement. After a few times of this, I went back to the handle, and I was able to visualize the movement and I finally did it a couple of minutes later. I feel with a rehabilitation program on leaving the hospital would have possibly solve this problem. So I am going to become an advocate of a rehab program before people leave the hospital.
In the time of recovery where you are now, I had apraxia of speech and aphasia. Both still show up when I’m stressed or excited. Fortunately, my friends and family altered their speech patterns so I wasn’t as confused.
I think you’re on to something with rehab before being released. I believe at the least, I would have benefited from being checked out with speech, physical and occupational therapy so my Neurosurgeon could have sent the list to my then PCP of what I needed here at home. With the length of time it takes some of us to recover, it would be a start. To this day, I credit the wonderful NSICU staff, especially a handful for the jump start I needed to set me on my recovery journey.
I definitely have headaches a lot of tension ones since my clipping in Aug… doc office also told me it’s not from the clipping. Although the spot that is tensioned is the place where they did the clipping…
Hey Sarah,
Welcome to Ben’s Friends.
Unfortunately your experience with the dr saying it’s not related is rather common. I had one Dr tell me ‘They operated. They fixed’ but it wasn’t fixed. I was told the source of the pain was stress related, past stress, present stress and future stress. It was explained to me that I was storing all of this stress in my neck, shoulders and face. And this was the cause of the headaches. A neurologist told me he had the key… …Botox. I had repeated treatments of 30 injects, 3 months apart, but with very little benefit for me. If the headaches were ‘tension related’ the botox would have released said tension and at the very least reduced their severity.
You state “Although the spot that is tensioned is the place where they did the clipping…” when you say ‘tensioned’ does it feel tight in that region or is that the region of the pain? Also does it feel like its your scalp/skin or further in?
There’s a couple of reasons I ask: When they cut the scalp, they severe the nerves in the scalp. When these severed nerves are pulled back together, the nerves often don’t match directly. To try and re-establish they fire off messages. For some nerves they can connect up fairly easily, for others there can be ongoing issues. If you consider nerves to be like the branches of a tree, damage anywhere along a branch can cause a misfire along that branch. Similar to hitting your elbow in just the wrong spot and getting tingles in your finger tips, you didn’t hit your fingers but, ouch, that’s where you feel it.
Where they bring the scalp back together never feels the same. I’m 10yrs on from my last neurosurgical procedure and my scalp still doesn’t feel ‘normal’ over the scar, but those misfiring nerves have reduced. In saying that it took a good 12mths for mine to settle.
If the pain feels intracranial or inside the head, that’s a bit different. Often some dr’s will say ‘well, it’s not your brain that’s source the pain’ and the reason they say that is because the brain itself has no pain receptors, so it can’t feel pain. Yes, it processes pain messages from the body, but not the brain itself. Inside of the skull, covering the brain is a layer called the meninges and this layer does have pain receptors and nerves and blood supply. When they perform a craniotomy this layer can be disturbed and can cause ongoing issues with headaches.
You state that you had surgery in August and as I said earlier I was still having scalp/skin misfires 12mths on. As for the headaches, they’re a daily thing for me now. Some days that’s manageable, but then some days just WOW intense.