Hello everyone… I joined BAF Support many months ago, then fell off as I began trying to deal with what I have discovered is Persistent Post-Craniotomy Headache. I ended up in the ER one night because my headache pain was nearly a 10 out of 10 (not a thunderclap tho) where they administered a migraine cocktail, diagnosed me with tension headache and finally referred me to a neurologist.
So nine months after my surgery I got to see a neurology team and they began treating me with tension and migraine therapies because they couldn’t succinctly pigeonhole my symptoms. In a nutshell, nothing has helped. My SO found a research paper on PCH and Botox and after reading it, I found it described my symptoms to a tee. I messaged my neuro team about it and eventually got a referral to the Pain Clinic… my appointment is a virtual visit in February 2027.
Yesterday I went to the ER again due to the new symptom of pain and pressure in my eyes along with “dancing eyes”. After 7 hours I was seen… 4 different neuro docs, a couple of nurses and a general doc… 5 hours later I got an MRI… 2 hours later I got a sympathetic dismissal… they saw nothing wrong and the doc literally said I was dealt a bad card but I am strong… no thoughts, ideas, suggestions of relief for my symptoms. I almost feel like they are saying it’s all in my head (ha).
I feel abandoned, given up on. I’ve been missing a lot of work (which affects me psychologically in a completely different way), I’m tired of being in constant pain and not being able to do simple things like drive to the store to buy cat food. My Father (!) is suggesting I try THC for symptom relief.
Has anyone else had experience with chronic post-craniotomy headache? I’ve tried the cold cap, TENS unit, massage, meditation… to no avail. Any responses are appreciated! PS- I’m back here as part of my Don’t Lose Hope to-do list and intend to become a good community member
My goodness SaraJane, you certainly have had a difficult journey! I don’t know of any members who’ve had such bad headaches and other issues after a craniotomy. We have members who have endured some odd feelings and headaches, perhaps they’ll come and share what they’ve found that worked for them. We’ve had members who had migraines prior and for some, those went away but not for all. There’s also been a few who have allergies to nickel which may have been something that was used in clips years back. I know there’s been a few who have had follow up angiograms to see what’s happening. Has your neurosurgeon suggested an angiogram?
Of course I’m going to remind you to hydrate properly and eat protein, rest as needed because those things help. Often times when we are in pain or generally not feeling well we forget to do the simple things because how we are feeling in the moment gets our full attention. Don’t give up on doing relaxation breathing exercises. Whichever one you have chosen takes more than a couple weeks to really be a good tool in your tool box.
Many times we identify ourselves by our career choice. A few years after I ruptured, I realized I would no longer have my career choice as part of who I was and it hurt emotionally. Sounds odd that it would take so long, right? Having no affect stopped emotions and my brain had to heal. We are so much more than our careers.
Remember we are always here; however, no one individual has to be here all the time. We love when other members contribute their experiences and knowledge. We do look forward to seeing you helping as much as you can. February is not that far off, hang in there!
I am so sorry to hear about all you have been going through! You have had a lot on your plate to deal with, not feeling well, and then to not get any answers!
I basically had endovascular surgery for my aneurysm so I can’t speak to the clipping experience. Wanting to help in some way, I searched old posts, and there are quite a few results ((clipping headache) seemed to be a good search). I am linking to one that had a number of posts, but you may want to review other results.
Please don’t give up! If you aren’t able to get answers from your medical team, maybe it is worth a second opinion??
This is long so main point is start using a Headache Tracker app on your cell phone. Everyone is different but here’s how I was able to get my headaches post craniotomy under control. I’ve had major headaches since I was a child but never diagnosed as migraine until my post craniotomy. My aneurysm ruptured in 2013 and was coiled, coils compacted so had same aneurysm clipped in 2017. My headaches were worse after the coiling, kept getting more severe, then I switched neurosurgeons and he recommeded clipping. The MRA’s between coiling and clipping showed everything as stable. During the clipping the Dr discovered the coil mass was very unstable, it was fused to the optic nerves and with every heartbeat it pressed against other nerves. He clipped the aneurysm but did not remove the coil mass because it would have made me go blind in that eye. I had told him in advance I didn’t want that. The hope was I could get my headaches under control. It took about 2 years but they are even less now than before the rupture. What I did: I saw 6 different neurologists/headache specialists. Unfortunately they have a list of treatments for migraine and they just start trying each one down the list. This took way too much painful time for me. I had intractable chronic migraine at this point. I made it my mission to figure it out. I researched as much as I could find. The biggest help to me was tracking my headaches daily. There are many different headache trackers, some free and some cost. I found a free one that I put on my phone. I entered my head pain (or not) daily, pain locations, meds I took, sleep, activities, weather, etc. A pattern started. Weather: dropping barometer/rain worsened & high heat & windy also bad; poor sleep was bad; sugar was bad, caffeine I had to stop completely, started yoga which helped. I started taking high dose of magnesium + CoQ10. I tracked everything in my headache log and started noticing pain lessened as I made changes. Then during the Spring I started taking Zyrec for my allergy symptoms. I tracked this also and started noticing my headaches getting less and less. Allegra & Claritin did not help, just Zyrtec. I kept making changes watching my headache log and noticed the numbers kept dropping. I’m now 9 yrs since clipping and 2 yrs since I started tracking headaches and I now only have about 5 headaches a month and with much less severity (unless it was one of the strong triggers I had identified by tracking) and I don’t use or take any migraine specific medicine. Moral of my story, take control, and work with your doctors. Good headache trackers let you print out everything. The more info you can give them, the better and quicker they can help you. I wish you the best! Hang in there!
@2hotinPHX please don’t get overly concerned… of the hundreds and hundreds of craniotomies my surgeon has done, I am only the 3rd person who has reported such symptoms. I’m sure the reason for your surgery is more important to be addressed than a slight chance of an after-effect!
@Moltroub thank you so much… I appreciate the time you took to reply… and this is why I’ve come back - and will give back - reading your words makes me feel like I’ve been wrapped in a cozy blanket and I’m safe… just having people like you around eases my anxiety
@viv22 holy moly! yes, long post but so worth the read! Thank you for taking the time to share your experience - I will certainly take your advice about the tracker… we haven’t been able to identify any triggers yet, so this may help! I too was “labeled” with something intractable… you are absolutely correct that we have to advocate for ourselves! I’m sorry about your migraines, but so very happy that you’ve found a life changing formula that works for you!
