like it says above, i have a permanent headache from surviving my burst aneurysm. does anyone else experiencing this have a medication they can recommend to me>
Seems like, you have tried a lot of different meds. My neurologist put us on magnesium oxide at a dose you had to ask the pharmacist for although it’s an otc. We simply had to provide the neurologist’s name. I cannot stress enough the need to keep hydrated. I just learned Friday from Dr Aseem, a radiology resident at WFBH, proper hydration keeps your BP regulated, if you use an epi pen you go to the hospital in case it doesn’t work so the anesthesiologist can get a tube down your throat, and that anaphylaxis causes a drop in BP. I also learned that some types of headaches are caused by issues in the neck from my neurosurgeon’s NP.
ImHello and I’m sorry your having the headache issue. I was having lots of headaches and my numerologist suggested a monthly injection (Ajovy), it has made a huge difference. I rarely have headaches anymore. You might want to try it. Having headaches is the worst. I wish you the best.
Ms. Jay, Do you mean neurologist?
Welcome to Ben’s Friends.
Headaches?? Hmmm, that can mean SO much. Some say cluster, some say tension, some say migraine and they can all have a different cause/result and differing treatments.
I have endured ‘headaches’ for decades, been told they were growing pains, then tension headaches, then migraines, then cluster headaches and as a result have tried a whole chemist shop full of meds. Everything from heart meds to psych meds to epilepsy meds to migraine meds and of course all of the pain meds.
I have seen many, many dr’s, each with their own opinion and own theory of why the pain continues and how best to treat it AND here’s what I have found:
Some dr’s are of the opinion migraines are an issue with neural blood flow.
Hence the heart meds
Some dr’s are of the opinion migraines are an issue with neural electrical signalling
Hence the epilepsy meds
Some dr’s are of the opinion migraines are an issue with muscle tension
Hence the psych meds, the Botox and muscle relaxants.
For some people these treatments can be the key they have been hunting for, but for some of us, they are not. I’ve gone out and seen audiologists, ophthalmologists alternative therapists like hydrotherapy, acupuncturists, manipulative physio therapists, Bowen (a type of pressure massage) therapists, pain clinics, psychs etc…
But I still haven’t found ‘My key’.
Head pain is VERY individual. No one knows ‘it’ but the sufferer. I’ve tried to explain it, tried to explain it’s intensity, in it’s BAD stages, I simply do not have the words (most of them are expletives anyway). I’ve had people say to me ‘Ohh I get headaches…’ and I’m so tempted to say ‘Not like these you haven’t…’ these aren’t just ‘headaches’
these are explosions of agony sent from the gates of hell", but I don’t, I just ‘try’ to smile and nod in understanding.
But once you’ve exhausted those causes/medications/treatments and the medicos have no more clues, then what??? We have to try and learn what works best for US as individuals, how we can manage the best way we can.
Every person is different, some people and dr’s will say “I have the key” and they may well have their key but that’s not going to be everybody’s key. Some will say “I know what will ‘fix’ it…” and sure for some it may well fix, but for others it won’t. This is by no means a ‘One size, fits all’ situation.
Now, I want to say here, I do not discredit anybody else’s treatment regime, if it works for them then that’s all that matters and if tomorrow someone said there was a benefit by standing on one leg facing north and singing kumbaya, I’d give it a go.
For me, personally, It really can be a case of management. Management of meds, Management of activity, Management of bright light, Management of sleep, Management of fluids (hydration), management of diet, management of stress, management of LIFE and everything that can contain and all of these things are variable.
There is a theory called ‘The spoon theory’ here’s a link https://en.wikipedia.org/wiki/Spoon_theory
It may help explain ‘management’ a bit better. In real basic terms spoons are equivalent to energy 'I have 10 spoons for the day, I use 5 spoons just getting up, showering and having breakfast. That leaves me only 5 spoons for the rest of the day and I haven’t even left the house yet.
Please do try other people’s suggestions, they may work for you. But please do not be placing all of your hopes on a specific treatment. I have before and been sadly mistaken when I have not received the desired result. This is not an easy journey, we know that 'cos we live it too and it can take a fair bit of trial and error and error and err… to find what works best for you, but if we can help, please ask.
Merl from the Moderator Support Team
I can sympathize with you. I have a headache every day. Some days are worse than others. My aneuysm ruptured. They coiled it then added a diverter. In March I had an angiogram and the aneuysm had fallen off. But the headache continues. My neurosurgeon said it could go away soon or later and it may not ever go away. So, what to do? Neurologist said it is a tension headache. They gave me Butalbital-acetamine-caffeine. My insurance company didn’t like it any more than my primary care doctor did. So, my primary care physician says it’s a migraine and his advice is I basically just need to tough it out. I take aspirin for blood thinner. I have liver problems so we have to lay off acetamine and ibuprofen is bad for the kidneys. I sometimes wake up in the middle of the night from the pain and I get up and make a cup of coffee. My grandmother used to tell me her grandmother would give her coffee for “the headache”. Sad as it sounds that is the only relief I can get. I have heard Botox but not interested (needle phobic). Of course I have heard medical marijuana. I didn’t do it when I was young and it’s a little late in life to start now. I totally understand doctors not handing out pain pills but they know I’m not making this up.
I wish I had a better information but I think it is just one of those things we have all dealt with. And so far, I haven’t heard of anyone with a solution.
I also will have permanent headaches from my aneurysm rupture/coiling/clipping. I also have had migraine since childhood that wasn’t diagnosed until after the aneurysm. First thing I did was put a headache tracking app on my cell phone and start keeping track of them. At first mine were every day. I went to 3 different neurologists and tried one of the new injection drugs but had a bad reaction to it. At the advice of my last neurologist I stopped all pain medication to break the rebound headache cycle. That was tough but pain improved in over a couple of weeks. I added magnesium, CoQ10, and B vitamins along with melatonin to help me sleep. I stopped all aspertame. Within 1-2 months my headaches cut to half and with much less severity. I started yoga and get massages when needed. I’m now at 7-10 headaches a month with almost none being severe, and I can live with that. Keep researching and trying to find what works for you but give the changes time before giving up. Best of luck and I hope you find some relief.
I tried many things also and finally found sumatriptans work for me, takes 1-2 hrs to kick in. Ask your PCP about it.
The triptan family of medications certainly have their place as for some they have been known to work very well, but for some the side effects can be nasty. Personally I had issue with hot and cold sweats, dizziness and tiredness from a range of triptans I was trialled on. I believe you’ve got to give them a trial (with a dr’s supervision, of course) because they may work and if they do then that will be a HUGE bonus for you.
Merl from the Moderator Support Team