Don't quite fit in

I had a sudden subrachnoid hemmorage 2 years this past march. No known cause. I’m 55 have copd as well as numerous other health problems(most recent SVT). I had no luck finding a support group for what I had and this is the closest I found. I didn’t have any problems after at first but have found it stressful to have 2 loud noises going on at once. I get little pains on my scalp occasionally which is nerve racking but find rubbing that spot helpful. I occasionally struggle to find a word while talking. Im very grateful to the Lord to still be here. I have many grandchildren I would like to see grown…but at times I get scared I won’t. Its hard to communicate this to family. Thanks for listening(or reading lol)

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Hey Leslie,
Welcome to Ben’s Friends.
Those fears are normal, well, that is, they were the same for me. Initially, post surgery I had this weird whooshing sound when walking, add a loud noise to the mix and my balance was affected something horrible. I mentioned this to the medicos and they looked at me like I was imagining it all like “How can a noise affect balance? That can’t be right” but it was.

Aphasia or trouble finding words is common depending on which parts of the brain are affected. I find the first words that often come to mind can be a little too direct (some would say offensive), so I have to take the time to select more appropriate language. By taking that time, some people interpret this as me being ‘slow’ and some people try to take advantage of this and that annoys me, which only brings the less appropriate language out quicker. It can be a real battle for me to hold my tongue.

Trying to communicate the realities of it all is near on impossible, even to those we love. Some people find it difficult to understand it all (as if we, ourselves, can understand it all) but the reality is we have no choice, no control over it all. We have to adjust where we can and live with it all. We all understand this because we live it too, so come talk to us.

Merl from the Modsupport Team

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Welcome @Leslie! I’m sorry the doctors could t figure out why you had a SAH but from what I understand it can just be a spontaneous occurrence. I found this Subarachnoid hemorrhage - Symptoms and causes - Mayo Clinic

I think you fit in fine here, no worries. Your resulting symptoms from the SAH are the same as those of us who ruptured and I hope you will be able to find a lot of ways to deal with them here.

I also have SVT, diagnosed for decades as a matter of fact. I control it best with deep breathing as it allows more oxygen to enter my blood, thus keeping my heart more relaxed. Many people have to take medicine for it, I’m one of the lucky ones in many, many ways.

Having fear or anxiety following so many health issues is very understandable. As Merl said about aphasia, I fit into his category as well. Some things that help to keep me relaxed is of course the deep breathing, Speech Therapy also taught me to take a breath before speaking and tot at a rhythm which was to control the stutter, but helped my brain find the “right” word. If I can’t think of the right word, I describe it. It has improved over time, years, not months or weeks. Do word games, word of the day from one of the online dictionaries…it’s all about rebuilding the connection that was lost due to the SAH.

We are a good group of people who definitely understand what you aren’t able to communicate to your family.

Again, glad you found us!
Moltroub

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Hi @Leslie!

Welcome to the BAF community! How frustrating to have had an SAH with no known cause! You have found a wonderful place of support and caring. We are hear to listen and help each other as much as possible.

I agree with @Moltroub that your symptoms are very similar to those of a ruptured aneurysm. Healing takes time, and the path for everyone is different. Please be kind to yourself and remember that you are not alone…

Kim

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Hello @Leslie, you do fit into this group and are most welcome! It is stressful dealing with the ups and downs of our brain injuries. I went through a rupture 14 months ago and for the most part, I still get neck and headaches with the occasional dizzy spell, though that is less and less frequent. Exercise has gotten me through the hard times. When I have a good or really good day, I jog even further. It helps in all kinds of ways…I’m happier, less stressed and anxious and feel stronger than ever. In other words, just do what YOU love to do as often as you can…coming back to this support group now and then will give you hope, make you smile and also realize that you are far from alone in this, we are there for you friend. Cheers!

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Sorry you have been going through all of this. I too had a spontaneous subarachnoid hemorrhage. They found an aneurysm at the time so I ended up having open clipping done. I struggle finding my words and my memory is bad. I am grateful for the fact they found it and I got treated. Nice to read tour story! Keep on keeping on!

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@Leslie
Welcome Leslie. Grateful for you being among us. You are with an amazing group here. Sending well wishes and prayers your way. Gods Blessingz!

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You fit in here. I’m glad you are with us. Enjoy those grandchildren.

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I was pretty much the opposite after my rupture. I remember the shoulder and neck pain when I stood up to go to bed. Then I remember that headache. I crawled to my couch, sat down then fell over and off the couch. That’s when I called for help… to go to bed. I was apparently having normal conversation with everybody and just kept telling them “I had the worst headache I have ever had” (sound familiar). But I don’t remember anything and mean nothing from the time I was on the floor and I suddenly saw a group of people going by telling me I was doing great. That went on a while and I remember they started asking me what date it was and I didn’t even know what year it was. Most of what I know came from reading doctor’s reports and patient portals. I never tried to explain anything to anybody because in my memory and in my mind, it never happened. Other than here, I don’t talk about what happened because I don’t know.

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@Mary it can be very difficult for us to explain to others about a rupture. I think everyone here in the support group who have ruptured certainly know that thunderclap headache! As Merl often says, people don’t see what happened because we don’t have a broken leg, or anything else that can show them unless we have a craniotomy. We are glad you have found a safe place here to tell your story and what you can remember.

Best,
Moltroub