Hello all, I’m Nami and currently in Thailand. I found this platform yesterday and joined in. I had Endovascular coiling last week Tuesday. I have experienced headaches but seemed to be easing as the days go. I was prescribed some medication (ortrip) but it has me feeling worse the next day. It’s been hard to fall asleep and I’m looking for tips… I’m just nervous about recovery, I am mostly laying down and walking around the house as this is day 6 post surgery. I have a follow up appointment next week Friday and I’m wondering if there’s questions I can ask my neurologist because they did not give me much as to what recovery looks like,.. since my aneurysm was at the onset of the optic nerve, I’m wondering if I should see an neuro ophthalmologist just to see if my left eye is A-okay. I am just nervous, I miss working out and cooking and just being able to be with my children, it’s almost a week but I am struggling. Please help.
Welcome, Nami!
It looks like you found my response to Ann about what recovery looked like for me - again, take it with a grain of salt because we do have folks here who recover quickly from their procedures - bodies are different and healing looks different for all of us.
You’re still very close to post procedure so I hope you get rest, hydrate and protein and that it keeps getting better and better each day.
(I have a migraine today, so apologies that my reply is not longer.)
Wishing a speedy and full recovery for you,
Kaile
Yes! It’s been great going through past commentary on different issues. My goal is hydration, rest and more protein. I’m thankful o found this community when I did. Thank you so much.
Thanks for starting a new topic! Excellent!
Great goals in my experience Nami! It can be very difficult for folks who like to keep busy to come to what feels like a screeching halt. Try to look at it as an exercise in mindfulness.
For questions, I’d ask about weight limitations. Since the WHO recommends a higher amount of protein than what is recommended here in the States, I’d ask about that as well. Also ask about hydration, just in case it’s a different recommendation than the 8 glasses. When I worked, I had trouble falling asleep and often drank some Tazo calm team I like hot tea, Calm is a chamomile tea. (Hot tea also brings back good memories of my Grandma so I starte each and every day with Lipton. But because she’s been gone many decades, I get the first cup from the bag.
)
It can take awhile for us to get adjusted to medicine, but perhaps reach out a let them know now instead of waiting for your appointment might be warranted.
Thank you so much for starting a new topic. Hang in there!
Hey @una1021 ,
My name is Merl I’m a member of the modsupport team here on Ben’s Friends.
Welcome to our network. Something I have found is that some people can come through it all really well. For some, they can have a few issues and then for others it can be life changing. I’ve required a few neurosurgeries, the first couple were shocking, but I recovered fairly well. I had those pesky headaches, but with a bit of management around medications vs activity vs rest and learning to listening to my body when it told me to stop. I got back into life. I had 12yrs of ‘manageable’, not great, but manageable.
Then the wheels of my little ‘life’ cart really fell off. I required 3 further neurosurgeries and each surgery hit me harder and harder. That was back in 2013 and I still get weird and wonderful (NOT) side effects today, every day (including those damn headaches).
Here’s my recommendation:-DON’T DO WHAT I DID!!! I ‘tried’ to force my recovery, make it happen quicker. Hint: You can’t recover quicker than your body will allow. That question of ‘How long?’ (which we all have, well, I certainly did) can be very variable.
Start slow, don’t push your limits.
Now is a time to be kind to yourself. Let’s face it, you’ve just had brain surgery. Give yourself the time your body needs and not just the time your own mind thinks is enough.
That thing called “Recovery” is NOT a straight line of progression. I have good days, bad days and those sorts of days you wouldn’t wish on your worst enemy and I just never know what today will throw at me. I need to be prepared to manage what the day throws at me.
Try to learn your symptom triggers and avoid them. For me bright sunlight can be a trigger, so where possible I stay out of the sun. I wear dark sunglasses. I have some awful issue with body temperature regulation, so I hibernate inside in the heat of the day.
When it comes to medications we strongly recommend you speak to your treating medical team, someone who knows your medical history. Some medications can have some awful side effect, which needs to be managed by a professional, your dr. The side effects of ortrip and other meds of the same class can have a large range of effects. I can’t tolerate these meds. If you are uncomfortable with these effects, many of us are, you need to inform your Drs, so they can find an alternative. I have been trialled on a vast range of differing medications from heart meds to nerve meds to psych meds to epilepsy meds to find what works best for me. Please, don’t get me wrong, I don’t have all of the answers. Sometimes my management of it all works well, sometimes it all manages me.
Hope it helps
Merl from the Modsupport Team
Hello @Merl Thank you so much for writing me back, this is a wonderful advice! There’s that temptation to “speed up” recovery and I’m learning to listen to my body. I have been able to shower by myself since yesterday without feeling like I was holding shopping bags from the store. I am able to eat well and sleep well when I finally shut my eyes. It’s been hard not to do the things I like but I have adjusted. The headaches are better but the emotions are up and down.i can walk around the house for a bit, just so im not laying down all the day. It’s slow but necessary.
My main caretaker is my husband and he works full time but has been allowed to work from home- he does his very best and I feel for him between work, kids and me. It’s be great to receive meals from members of our church and friends who take care of our children. It will definitely take time and I just have to be still and allow my body to heal.
And if you can accept that, you’re 1/2 way there already. I didn’t. I took what I call the “Caveman mentality” ie “I man. I strong. I can beat this”. But the more I pushed, the more my body pushed back in agony. I didn’t want to accept THIS, so I ignored those signs taking the attitude “This thing’s not going to beat me” and pushed some more. Something went ‘POP’ and I found myself back on the neurosurgeon’s table requiring another operation, hence me saying:
Even years later I still have somewhat of a battle with that ‘acceptance’ thing. I want my old life back, but that’s long gone.
Merl from the Modsupport Team
I hear you Merl. It’s a constant battle. Although it is early days for me, it feels so weird. The longings of the days ago are always near and it’s frustrating that they may never be or they are further away. Hugs to you 
Just a little housekeeping @una1021, I’ve moved your topic to be under General. Hopefully more will respond.