Hope everyone is staying healthy
I’m new here. This is a great support
I had a SAH Sept 2018 then coiling and pipeline stent Sept 2019. Just had follow up angiogram was advised that coiled aneurysm looks good but still I still have a small unchanged one they are watching will have another angiogram in a year.
Through all of this I have been having bad headaches, numbness, depression and to be honest have not felt myself at all since this all began. Has anyone else felt this?
Welcome Quindaylay! We are really glad you found us!
Headaches are quite common after SAH. You will find that our members have tried everything from A - Z to get rid of them. Unfortunately, there’s no one fix for everyone. The first thing you will need is a Neurologist. Neurology deals with the central and peripheral nervous systems, think brain and spine. They are not surgeons but will refer to a neurosurgeon if need be. One thing I’ve learned is hydration and protein are crucial to healing after rupture as well as overall healthiness.
The numbness could be lots of things, we aren’t doctors…well you may find one or two, but no licensed medical person will give medical advice on this site. We can share our personal experiences. You might want to add where the numbness is. Things like foot drop are common. It’s where one foot doesn’t respond like the other and it seems like your dragging it. For instance, my rupture was on the left side and my right foot falters when walking. It’s like I’m stubbing the ball of my foot on whatever surface I’m on. The more tired I am, the more it happens.
As for depression, many members go through this, some are diagnosed with PTSD. Some of us had our lives changed abruptly and it takes time to get used to the new road we travel. Most folks aren’t keen on change, but a rupture will sure teach us to be patient with ourselves. Look for a good Cognitive Behavioral Therapist (CBT) or someone who specializes in Strokes. Since the effects of ischemic or hemorraghic strokes are similar, they should be able to help. Looking for a therapist Is like looking for a good pair of shoes, you need to look for one who will ask why are you here (meaning your goals), someone who will encourage growth and give you skills you can use outside of their office. A good therapist will tell you or encourage you to tell yourself what you need to hear, not necessarily what you want to hear.
As for not feeling yourself, this is also quite normal for folks who ruptured. What has happened is blood has gotten into the Subarachnoid space, thus the SAH. This space is between the arachnoid and pia matter of the brain and continues through the spine. It’s what is filled with cerebral spinal fluid. When we rupture, the blood enters this and mixes with the CSF. It takes time for the body to remove it from the CSF. Depending on how much blood sorta dictates how much time it will take, different for everyone. Anyhow, the rupture has destroyed the Neuro pathways that send messages around your brain, I liken it to a map with many roads. You knew the path to take, but suddenly there’s a road block and you can’t go that way anymore. It’s ok, our brains will build a new road or pathway. It takes time. Be patient with yourself.
Whatever you do, never give up! Right before I ruptured, we had some training at work on brain injuries. The thing I remembered in ICU was that the study she was discussing indicated that no matter how old we get, our brain can heal from injury.
Thanks Moltroub - I read your posts to others they always help me too. It’s nice to know that I am not crazy, or that it is all in my head (well it is, but you know what I mean) .
Welcome Quindaylay! Each if us if different but so many similarities read through these and know that we’ve been there or someone has. It is nice to be able to help someone else and you’ll get there too.
Heal well, take your own time and know that you will continue to improve, but this is now the path you are on. Don’t fret the little things, look for and enjoy the improvements.
Hi Moltroub - I am new here too. This is the first time to
write a bit on the discussion group. Thank you for the good
thoughts to help Quindaylay. They were helpful to me also.
Thanks so much for this! This info helps a lot
I am seeing a neurologist who has prescribed Topamax 50 mg at night which I stopped because I felt it wasn’t working then with COVID pandemic I haven’t been able to get another appt so I decided give Topamax another try and add Melatonin (I’ve researched that it helps with it). Feels good to know that I am not alone In the way that I feel.
This is really a journey
So glad I found this support group.
Welcome Gardenpeas! This is a really great group of folks. Not only do we often learn from them, but we get to share our experiences. When you feel like it, ask questions, or just share. Start a New Topic by clicking on it up at the top right side.
Thanks so much for the kind words everyone, it truly means a lot!
I “wasn’t” myself after my coiling/ stent and I knew something was off. I made an appointment with a psychic and during session I was told that my spirit had gotten trapped outside my body during the surgery. So as strange as it seems, get yourself a tune-up / chakra cleansing. I left after ONE session feeling like YES, I AM BACK! Best mind & body healing thing I did. My “incident” was March 2011
Hi there. Our situations feel very similar. I had the same treatment and also took a long time to get back to what I call feeling “Cathyish.” It did come back, but have also dealt with anxiety due to worry about the untreated aneurysm. I did EMDR with a naturopath and it helped enormously to let go of the fear.
I have started a blog on Facebook called Noggin Notes. It covers ‘aha’ moments in dealing with the new normal (far less ability to focus, fatigue, symptoms kicking in and laying me out for days etc). During Covid I am doing nightly walks to take in the sunset. It helps to centre me and find my gratitude for still being alive. I have found gratitude to be so important in resetting my view of things. I beat the odds and am so happy to be here still for all of it-- good, painful, humbling situations; whatever comes.
Warmest wishes to you as you walk this path.
I had SAH 15 years ago. I had craniotomy and clipping for the ruptured one and 3 others on the right side of my brain. 4 others were found in the left side, and I had another craniotomy and clipping to fix 3 of them 6 months later. The last one was very small and in a difficult spot, so it was decided to monitor it. It was monitored for 14 years before it finally started to grow. It has now been coiled. I did have headaches and exhaustion for some time after the SAH. It’s difficult to be patient, but try to be. Your brain will heal, but it has it’s own timeline . The idea of a neurologist that others suggested would be a good idea! Be well.
I had my SAH in October 2011. Since then I’ve had a second bleed, & 2 stents placed, also have about 14 coils where the rupture occurred…
I too suffered severe daily headaches for about 8 years. I went to about 6 neurologists after my initial rupture with no success, they all insisted I didn’t have headaches. I’ve written about my frustration on this site several times. Finally my neurovascular surgeon referred me to another neurologist. We tried different medications that didn’t work, I finally agreed to try Botox. It has helped. I still have an almost daily headache but they’re not as severe & taking an over the counter pain reliever seems to take care of it.
I wish you lots of luck with your search for relief I totally understand your frustration. We all have different ways of finding what works for us. Hang in there & keep searching
Wow! This info and hearing these experiences are so very helpful. I will learn be patient with healing and with myself .
It is a comfort to know that my feelings are not unusual.
Great suggestions from others who have been through this. I have never experienced anxiety till I was diagnosed with a small aneurysm 7 months ago. I found some comfort knowing that I was not alone and things will improve with time. Anxiety classes and a good mental health therapist was also helpful.
So very glad to Know that others have same feelings and have solutions and great helpful tips and coping strategies
How severe was your 2nd bleeding?
My daughter had SAH 18 mos ago. Beside aneurysm, she has a huge AVM on the other side of the brain. She has been going thru the Gamma Knife radiation treatment and embolization for her AVM. Unfortunately, somehow, somewhere, her brain bled a week ago, which caused Interventricle Hemorrhage. Over 10 days already, and she hasn’t shown much of neuro activity. The blood is draining still and Dr expected the total in ICU may be more than 3 weeks. So sad and so scare of what condition she will be in. Physically, she got some mobility on her right side, now her left side got impacted. Her short term memory was still whacky before being bled the 2nd time. Just curious, how long did you stay in ICU for the 2nd time? The recovery for you must be so rough, too. Thanks for sharing!
So sorry to hear about your daughter.
I was in ICU 14 days when my first one ruptured, I had 9 coils put in to fill the ruptured area. After a couple of days I was pretty much aware of my surroundings & nurses, I had debilitating headaches 24/7 which continued for the next 8-9 years. I continued to do all my follow ups with my neurosurgeon. Last year after a routine angiogram he noticed something behind my first rupture so we scheduled surgery for him to go in and take a better look. When he got in there the second one ruptured, So he had to repair the new one. My first one had been leaking so he also added additional coils to both of them and put in a stent so blood flow hopefully will not go in that area. For the second one I was in ICU for 10 days and to this day I still don’t have any memory of it. I was then put on a regular floor for 6 more days. I have to say the second one has been harder to overcome than the first one. These are hereditary, my dad had 4, his last one was a double, he passed away after 2 weeks and didn’t know who we were.
I wish you both the best in her recovery, just let her know life as she knew it may be different now, and it’s perfectly alright. I had to retire early because of mine. I’m very lucky to have a husband that’s been very supportive and understanding.