IN 2016 I had a ruptured right A1 A2 Junction aneurysm. It was coiled, I survived. It got worse, I had a recoiling 15 months later. Here we are just finished year 3.
My headaches are getting worse. I have same symptoms as others here, overstimulation of noise or light increases the headaches in frequency and severity. I also get anxiety - I cannot remember where I parked or sometimes where I am which leads to momentary panic that I can logic myself out of, but it is panic non-the-less. Just had another MRI/MRA, no results yet. I expect to be fine. I am finding it very very tiring to keep on going with these headaches and what I call spikes (very intense, short duration - kinda like stubbing your toe pain - but in your brain and without warming). How can I cope with the pain? How is everyone managing? uhg!
Hey Kparry, you’re back! Good to hear from you. I’m sure your group members will be jumping in sometime soon to put their two bits’ worth in.
Hang in there!
Seenie from ModSupport
I know anxiety! If I can’t find my purse, I go through all the scenarios: someone broke into the house, I left it at the drug store, etc… The credit card companies know me since I’ve reported my cards missing so many times. I know now to call my husband, who talks me down and says he will look for it when he gets home and to not cancel the cards until he looks for it. It leads to insomnia too, since I worry a lot about losing money. I’m impressed you can talk yourself down! I do not get headaches daily anymore, but I just took a plane ride and had a doozy that lasted for almost a day. The time change, the sleep disruption, the lack of oxygen on the plane, the stress—something about flying still gives the worst headaches. I don’t have a great answer for them. I have seizures post op, so I don’t want to take most drugs. I take Tylenol, go to a dark room, have a glass of wine, or take a hot shower and gently rub my scalp. Just to try something to distract or divert attention from the pain. You did the right thing with the MRA, I worry when something gets worse. The headaches have gotten less frequent over time. I had an open craniotomy and an aneurysm clip and I don’t have the lightening strikes of pain you describe. Just continuous tightening of my brain, so it feels like it’s trying to get out of my skull. I hope tomorrow is a better day! Glad you are here!
Thank you Kate3 - I just needed to vent…sigh. Tylenol is my friend but when that doesn’t work I switch to scotch - but just one or two if bad, it helps. A hot shower is a great idea, I will try that. This is great for the support.
Thank you. Just need to vent and know someone understands…
I too have some wicked, wicked headaches with spikes of intense pain post craniotomy. The expression ‘ugh’ doesn’t quite express it adequately, my expressions of it all are full of many expletives
Since the craniotomy I’ve required a few other neurosurgeries and this has lead to a fairly constant headache behind my eyeballs with huge spikes that are nothing short of nasty. At times I’m tempted to dig my eyes out with a teaspoon just to relieve the pressure they are just so intense. I’ve had all of the tests… …Nothing. The dr’s have stated ‘Well, it’s nothing we have done, so it must be you…’ which is about as helpful as a hand full of rocks.
How do I cope? Good question. Sometimes I wonder myself. I have a number of tools I utilise. I have medications (Opiates, CBD/THC oil), a darkened room, I have a hydrotherapy pool, I try to alternate and vary my activities depending on my pain level. My pain varies massively, so trying to make plans can be a huge issue. On a good day I can get somethings done, but if I do too much I pay for it in agony the following day. So trying to pace myself has become a big part of my management plan.
I kept a ‘pain diary’ to assist in looking for patterns, monitoring my sleep, my activity, my diet, my medications and (believe it or not) the weather. I have found that for me it’s not just a one single cause/effect scenario but more a whole combination of contributing factors which can add to my ‘pain soup’. I often explain it not as an A+B=C theory but rather an A + B - C / D x E √ F… with each having it’s own impact. Trying to balance it all can be very problematic and what may work today in managing it all can have very little effect on it all tomorrow. I try to examine what I have done and the way in which I have done it to find what may have contributed, but it can be extremely frustrating when I can’t find a cause/effect.
So, in real basic terms, that’s what I do to ‘try’ and manage. I say ‘try’ because I’m not always successful, but I ‘try’ to manage the best way I can. Utilising all of the tools at my disposal.
I can completely understand and comprehend your need to vent. We all do. So please feel free to vent as much as you need.
Merl from the Moderator Support Team
Thank you so much Merl,
It really does help just to have someone validate my predicament. I think I try too much to be “normal”, to just keep trudging through in spite of the pain. I will try an new perspective and accept my new “normal” and allow myself to take it at a lower pace.
I too have tried to find ‘the’ trigger - but it seems there are many and my experience is similar to yours - but I have been trying to just go on. I will give pace a chance and keep you posted.
Thank you so much for your response.
"It really does help just to have someone validate my predicament."
Ohh hell, don’t I know it. That’s what lead me to Ben’s Friends in the first place, Like “I just can’t be the only one going through all of this %$#@” and sure enough I wasn’t. But prior the medicos had been solely pointing at me when their theories didn’t work. I was juggling enough aspects of life without that lot making me doubt myself even more. My situation may not be like ‘John’ or ‘Mary’ and the medicos theories and treatments may have worked for ‘John’ or ‘Mary’, they just haven’t worked for me. They just put me in the ‘too hard’ basket (which just means I’m a basket case ) But that doesn’t make my situation any less real.
Look, I’m not saying I have the answers, not at all. But if we can all share our theories, our ideas on what has and hasn’t worked for us, then it can only assist ourselves and others on this god damn awful journey. It may be the trigger that helps someone else find their key ie ‘I hadn’t thought of that…’ or at the very least show that there are many more of us out there who don’t have that miraculous ‘All fixed’ recovery.
This ain’t an easy journey. We know it because we live it too.
Merl from the Moderator Support Team
When I learned to properly hydrate and get the proper amount of protein, my headaches came less frequently. I also used an ice pack or slight pressure on my carotid. As I look back, I think they were caused by vasospasms, but can’t be sure as no one did an ultrasound after I was released from ICU, they always did a CT scan as the local ER is always concerned about re-rupture. If I went to the hospital where I had my coilings, they do an MRA. There is also the peppermint oil that I mix with coconut oil, it goes liquid in the warm months, I just keep it in a little jar that fits in my pocket. Ask your surgeon how much protein you need, mine was 90 grams. I had to use a protein shake or bar and chose Premier because it’s 30 grams. Everything else was about the protein level of chicken and it’s not my favorite due to a very bad experience with a cousin trying to feed me raw chicken
Talking yourself through the anxiety is a great skill! Also try some deep breathing. When I’m having what I like to call my “brain damaged days”, I take pictures of where I’ve parked the vehicle. Sometimes I take a picture of the vehicle so I know if I’ve driven the Edge or the Colorado…and I always try to park in the same area if I go to a local place.
Please don’t mix acetaminophen with alcohol…it’s really bad for your liver. Experience talking…I learned the hard way in my 20’s that they don’t mix when I woke up in ICU. The medical field didn’t know much about acetaminophen back then and my doctor had said to drink some wine with my pain pills. It must have been too much, my parents were told to make my funeral arrangements.