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So happy to find this forum!


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Wow! Having a NASAH has really made me feel like a crazy person at times since it seems not that common. But in reading about your experiences here, I don't feel so alone! My experience is very similar to many of you. Three months ago I was sitting at the kitchen table having a conversation with my son. He got up after the conversation and at that moment my head felt like someone was intensely squeezing it. Shortly after, I got the worst headache I have ever felt. For some reason, right from the beginning I identified it as a stroke (I think Dr. Jill Bolte Taylor had something to do with that since I had heard her speak and read her book). Even though the fire department, ambulance personnel, and hospital staff all told me I was having a migraine. Somehow I knew I wasn't, even though I had no idea what a migraine OR a stroke felt like! Thankfully my son believed me and advocated for me to be taken to the hospital. Unfortunately, I then sat in the waiting room for about 5 hours before they finally gave me a CT scan. It was about 9 hours after I got there that they finally did the ventricular drain tube to release the pressure. I spent two weeks in the ICU and then finally came home. I am still having daily headaches, PTSD and some short term memory issues but feel incredibly lucky to be alive and doing so well.

Did anyone else have trouble getting people to believe what was happening to you? Have you had any luck helping the Emergency room staff treat these non-classic stroke symptoms a little quicker? I am located in the US, by the way. I just feel that part of my responsibility in all of this is to help the next person who goes to the ER with my same symptoms so they can get treated faster. The PSA's on stroke all say that "time equals brain" - well, I got to the hospital quickly but they didn't seem to adhere to the same idea! What are your thoughts about this?

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Welcome!

Glad you found this treasure of a site. Good thing you knew about that Jill Taylor Bolte lady! I had never heard of a SAH or NASAH before but I knew something was terribly wrong and I needed help. I happened to get the same ER Dr. 3 times and the 3rd times after I was released from a 2 day stay I was back and he had Neuro in a bigger city studing my Scans and transfer me to a wonderful neurosurgeon who met me at the door at a bigger hospital.

I had daily headaches for 5-6 months than they stopped and returned when I returned back to work- go figure. Rest & drink plenty of water. Keep that brain hydrated well. I wish I would of taken a walk daily outside. But than again I had broken my foot shortly after the head thing and it was winter as well. But that is the only thing I wished I would of done differently.

I think we may all have some PTSD - for me it was a traumatic thing where I cannot stand to see football or cringe at things that make you hit your head. I am not sure if I suffer worse than that or not. I would have a really hard time if my boys were younger and in sports still.

Memory has improved but there are many 3 steps forward 4 back. I noticed the other day I was able to finally tell how fast a car is coming before I pull out. I normally just wait until the road is empty. I live in a small town.

Do you have any fatique? That is one of the issues that many of us suffer from. I still am fatiqued often needing to totally be alone and sleep. Noise? Super sonic hearing?

Welcome and feel free to ask away! The Green Room is for daily what you are up to & you know how to post a question already ( good for you it still takes me forever to recall how to do that!)

Maryb

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I use to work with the lowest and highest children in school 5-6 years olds as an aide. I loved it when that light bulb moment would hit them and they grasp something new. I feel that way now; I look at in amazement when I suddenly can do something that I could not figure out before- like cooking took a year. It is very interesting how the brain works and feeling those light bulb moments. You want to share it with people the whole experience and it is really cool that there is a video of Jill Taylor Bolte describing her event. I do find this whole thing fascinating sometimes when I am not so tired I could sleep for a week!

Maryb

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Hi and a warm welcome to BTG. Sorry to hear you've had the misfortune of suffering a NASAH, but glad you have found this forum where there is a lot of advice and support.

Regardless of which side of the Atlantic you are, it appears that the emergency response is not always what we would hope for, or expect. I, too had an unacceptable experience. At the time of mine (Nov 2008 ), I had not heard about Jill Taylor Bolte, but like you a 'stroke' came to mind and whilst it was happening, (with hindsight I could actually feel the blood escaping in my head) I called 999 sensing I was about to pass out. I did not pass out, but told the operator to hurry up as I thought I was having a stroke. The ambulance arrived within a few minutes, but the paramedic, after a few checks, left me at home:frown:

I knew that headache was not normal and over the next few days I called the Doctor to the house, visited the doctors surgery, rang NHS Direct (a telephone health service in the UK), visited the optician on the advice of the doctor and then finally it was my parents who rang the gp and persuaded him it was serious and needed further investigation.

So, six days later, I got an appt at a neuro outpatients clinic at the hospital and like you, I had a five hour wait before I was seen.

In fact I think I was quite lucky even at that point to get a scan, as the consultant commented "well, I'm not sure which box to tick, so I'll send you upstairs for a CT scan". I didn't get out again until 11 days later having found a ruptured anneurysm. As a result of the delay I suffered severe vasospasm (apparently the worst my radiologist had seen or so he told me on a subsequent visit) and I also have a small area of infarction. Whilst I was very fortunate that none of this left me physically disabled, I do wonder if the residual symptoms I have had were caused by the initial delay. The only thing I managed to achieve following this, was to get my gp to write to the ambulance service to point out this mismanaged incident to the paramedic in the hope that he may not make the same mistake again.

I didn't have the energy to do much more at the time.

Wishing you all the best in your continued recovery,

Sarah

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c-fos

I also knew I was having a stroke and luckily, they took me seriously. However, when once they decided that I was non-aneurysmal it was like 'no surgeries no fun for me as a doctor'...so you can imagine the rest. ICU for a week, Stroke unit for another, and inpatient rehab for another week and a half.

I shoveled my driveway today and felt perfectly fine...like normal. However, at night I turn into a drunkard although I never have a drink. My speech slows, I laugh/cry and the darnedest things, and my legs shut down. I have trouble sleeping about 2/3 of the nights even as I am so tired. I still get back/neck pain and then I burp and it's gone. Weird.

My subconscious brain is in control now and I never know what it'll throw at me when. The concept of arms began to fade the other night even as I could move them fine.

If you expect the unexpected and you'll do great.

Post any and all right here.

Oh, and an even better book is 'A dented image' it is well worth the price!

~Kris

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