I’m just passed 5yrs post SAH and still suffering from bloody awful headaches every day, I currently take Pregabalin and co codmol 30/500 and on occasion Tramadol. In the past I have tried Gabapentin (high doses) Topiramate, Beta blockers, I’ve even had Botox! I can’t remember all of the drugs that I’ve been prescribed but either they did nothing or the side effects were very bad.
3 years ago I had to go without pain killers for a month to see if the were causing rebound headaches and I can tell you it was a hard moth for myself and my family, anyhow the headaches persisted so proving that they were not being caused by rebound/medication. My worry is that I’m getting headaches everyday but only use painkillers when I get the headache so surely they are still not causing the headaches or maybe they are! I couldn’t manage a month without pain relief it would be hell but I’d like to understand if others have had similar experiences to me?
My Neurosurgeon has told me that the headaches are caused by damage from the SAH and that this may well be as good as it gets 
I'm only 2 1/2 years since my Annie with SAH. My headaches are horrible everyday. The only thing that helps are pain killers. I hate taking them everyday but the alternative is horrible. I have talked to people who don't get headaches and other people like you and me that get them everyday. I'm told the headaches are because of the SAH. But no one can tell me exactly what they do to our brain. You are not alone. Do you notice that if you have to think about something you get a headache. If we go to the store we get a headache. If people are loud around us we get a headache.
I have accepted that maybe I'm going to have to take pain killers for a long time but they do hrlp. They are the only thing does!
It sounds just like me... I have stopped everything for about 2 wks so far and one day without pain. I have tried different medication and I don't like my self even more. I am going to doc today and ask them if I can try acupuncture. Norco and Tramadol are good but too good so I don't want it. Apologize for writing... Aphasia makes me talk funky. Anyway, my pain is like a 2-5 every day and then 6-9 when migraines. Normally, I just keep doing what I do everyday and like you said... this may well be as good as it gets.
I had an SAH in 2013 and my headaches were bad but have decreased. Ocycodone worked until I suddenly became allergic to it. Have you been seeing the same physician or going to same practice this whole time? I’m just asking because sometimes it can be good to try someone new who can look at your situation with a fresh perspective. Also, maybe for you, medication alone is just not going to do it. Maybe you will need to explore other things, like a major change in what you eat, or acupuncture treatment, or something else. I’m no expert in any of those alternative things but I’m responding to what you are saying about trying so many meds with no result. Hopefully there will be a physician who can think outside the box and help you find some relief. Best of luck!
Thanks for the replies, I have a team of physicians ranging from my surgeon, neurologist, general practitioners and pain therapists. I’ve tried yoga and practice mindfulness which is very good for the mood. My theory and based on discussion with the neurosurgeon is that my brain is damaged by the haemorrhage, because of this it has become delicate and as it is delicate it is susceptible to many things but most of all fatigue. This in my situation is very apparent as I can have some good mornings. I don’t have caffeine or alcohol and do not smoke, I don’t eat anything with gluten and take care of myself by swimming 3 times a week. Can I ask if anyone has trouble sleeping? I’ve had sleeping trouble since the SAH and have to take sleeping tablets just to get to sleep that does not last more than a few hours?
Thanks for the replies.
Simon
I’m in the same boat…SAH / clipping survivor going on 10 yrs. I have had a strange tingling biting ache in my head and body accompanied by nausea all day every day. I’ve tried several meds, specialists, diet changes, and exercise etc. nothing works. I am 42, have a career and a family. I’ve just accepted the fact that this is my new normal — it’s horrible. I think the worst part is that no one has given me a good medical explanation as to why - can anyone explain why a craniotomy can cause pain so many yrs later? All MRI/mra’s normal
The sad truth is that it’s probably damaged brain tissue, I’m not a neurologist but I am someone that has experienced a SAH and had a variety of specialist look at both myself and numerous scans without giving a clear explanation as to why I still get headaches/fatigue/clumsy moments. That is apart from Mr Umang Patel (Neurosurgeon) whom stated that they are a result of damage caused by the SAH and will probably be a part of me forever. I’m now trying Pregabalin 150mg three times a day but it’s not proving very good!
Keep well.
Hi All ! I don’t know if my experience will help but I am post SAH and clipping from April 2014. VP shunt was placed at that time. Terson’s syndrome lasted for 7 months. Anyway, the headaches were horrendous. Tried opiods, Tegretol with no relief. Finally, my neurologist sat and looked thru every slice of my MRI and saw where my brain matter looked ‘dense’ at the affected site. She recommended Tizanidine/Zanaflex (which is a known muscle relaxer) 2mg when needed. Up to 6mg/day. I can tell you that although the headaches still come they have lessened in their intensity. This whole thing is a mystery to me. I am glad to be alive tho. Love and prayers to all !!
Hi Simon. I'm now 6 years out from my SAH, clipping of a 2nd aneurysm, and finally a shunt. I had headaches constantly, alternating with REALLY bad headaches. I tried gabapentin which did nothing but make me really depressed. A year and a half ago, I found a new neurologist (not a surgeon), who named my headaches migraines by virtue of their frequency. Based on my medical history (she was very thorough with that part), she prescribed amitriptyline, and it works! She started me on 10mg/day, which I was to increase by 10mg weekly, until the symptoms stopped. Mine stopped at 50mg, which I now take every day. It's an off-label use of the drug (which was developed to be used against depression, and as a sedative). I take it about an hour before bed (to avoid heartburn), and sleep like a rock for about 10 hours a night. Early on I would wake with a dull, distant headache that lasted about an hour, but even that doesn't happen anymore. The biggest drawback would be for someone who can't arrange to sleep that much, due to work, etc. I stopped working, for the most part, after my SAH, so that's not an issue for me. I still get "break-through" headaches roughly every two weeks, and she prescribed oxycodone for those. I have a theory that sleep is the most effective weapon against our headaches, because our brains need so much more rest than the average bear. I also saw a documentary some time back that revealed that when humans sleep, there's an actual "washing" of the brain that occurs, sweeping away detritus of the day. My guess is we have either tons of detritus, or our brains wash more slowly now, or some combination of both. Like I said, that's my personal theory! Bottom line is that maybe amitriptyline would work for you, too. Good luck.
Hi All, I’m 5+ years post rupture SAH, I have 9 coils. I too have daily headaches, I have seen three neurologists that have told me the headaches are NOT from my ruptured annie because (according to them) there are no nerves in that area. They have told me they are ‘tension’ headaches, I continued to work for 2 years after my rupture but couldn’t continue full time then after those 2 years I had to stop completely due to the daily headaches. I have never felt these are ‘tension’ headaches, I’m not a tense person. You are fortunate that your Dr’s at least acknowledge your headaches are from the SAH. I have tried acupuncture with no relief, I have tried several medications but the only one that seems to work is Norco, I also take fioricet. I was sent to a pain management Dr. last year that did an occipital nerve block which did nothing, the next procedure was a C2 block in my spine, they actually got worse after that, he would not continue my pain meds, he said they are actually causing my headaches. I did got off all meds for 2 weeks last year after one of the neuro’s said they were rebound headaches, it was a really tough 2 weeks. At this point I don’t know what to do next, the pain management Dr. wants to do more spine injections but I haven’t scheduled those appointments. I take trazadone to help me sleep at night and it seems to work well for me. I also take a nap most afternoons to try and get relief from the headaches, some days it helps slightly. I would love to have a neuro that would acknowledge the headaches are from the rupture & would be willing to help me find something that would work, I feel like I’m banging my head against a wall.
Hi All, I’m 5+ years post rupture SAH, I have 9 coils. I too have daily headaches, I have seen three neurologists that have told me the headaches are NOT from my ruptured annie because (according to them) there are no nerves in that area. They have told me they are ‘tension’ headaches, I continued to work for 2 years after my rupture but couldn’t continue full time then after those 2 years I had to stop completely due to the daily headaches. I have never felt these are ‘tension’ headaches, I’m not a tense person. You are fortunate that your Dr’s at least acknowledge your headaches are from the SAH. I have tried acupuncture with no relief, I have tried several medications but the only one that seems to work is Norco, I also take fioricet. I was sent to a pain management Dr. last year that did an occipital nerve block which did nothing, the next procedure was a C2 block in my spine, they actually got worse after that, he would not continue my pain meds, he said they are actually causing my headaches. I did got off all meds for 2 weeks last year after one of the neuro’s said they were rebound headaches, it was a really tough 2 weeks. At this point I don’t know what to do next, the pain management Dr. wants to do more spine injections but I haven’t scheduled those appointments. I take trazadone to help me sleep at night and it seems to work well for me. I also take a nap most afternoons to try and get relief from the headaches, some days it helps slightly. I would love to have a neuro that would acknowledge the headaches are from the rupture & would be willing to help me find something that would work, I feel like I’m banging my head against a wall.