SAH Survivor newbie-doobie-doo

Hi!

My name is Tory and I had a subarachnoid hemorrhage about 8.5 weeks ago (January 28). I was standing in the lobby of a movie theater holding a Large Coke Zero (tm) and I heard a strange pop and said, "Oh wow. I have a horrible headache! Oh man Roy! I have a HORRIBLE headache!"

So like the intelligent woman I am, rather than go to the ER with the worst headache of my life, I went in to see the movie (although I did hand over the large soda because I nearly dropped it) I just sat there grasping my head, trying not to throw up, and wishing they would turn the lights down and the sound off. Eventually I laid back because it seemed to feel slightly better when I did that and reasoned, "Well I can have a headache at home, or I can have one here. Roy wants to see the movie."

Before anyone thinks "What kind of husband!!!!!!!!????" he actually offered twice to take me home, I thought I said "take me to the ER" but it turns out I didn't say anything. when he said ...take me home...the second time I said "No, it's okay. I think I'll be okay."

I went home, straight to bed, then after hours of nothing working I posted on FB, "I have the worst headache of my life. Do you think I could be getting my first migraine?" (I'm posting this with all the lights off, the brightness down, whimpering, squinty-eyed, ear plugs in and yet I did not think anything was "wrong".) A friend saw the post and texted me (the ding literally caused an explosion in my head) GET TO THE ER NOW!!!! After a few feeble arguments, I went out to the kitchen and asked Roy to take me to the ER. I am an ultra marathoner with a pain threshold like that of Thor, so he turned white, literally dropped what he was doing and ran out the door....came back to get me, and drove me in.

Now I swear I wear a permanent PSA "If you ever have the 'worst headache of your life' do not pass Go, do not collect $200, go directly to the hospital!"

Long story short (too late)--19 days in the hospital. I got out with VERY little information, just "take it easy for 2 weeks, don't exercise for six weeks, and no strenuous exercise for six months".

...and that means?????

Tried to go back to work the Tuesday after I got out (so 23 days after the event) and found that even being home was taxing, so I called my neuro sobbing (sobbed a LOT those first few weeks) and she put it off another week, so four weeks after I returned to full time work as a high school teacher...because THAT'S relaxing!

I had NO IDEA what had happened...was in such denial it isn't even funny. I literally thought all the neuro symptoms I had in the hospital were from the drugs. Everything "went well" in the hospital, but I've since learned that "going well" doesn't mean "healed" and that brain healing takes a bloody long time!

On top of teaching, I am a personal trainer who teaches two classes Saturdays and two bootcamp classes during the week, as well as working one on one with clients. I have stepped back QUITE a bit from that, as it's simply not reasonable for me to work 7.5 hours and then go home and do a workout with a client. This week I've been at bootcamp (actually did try to participate my first week out...oh simple simple silly girl), but haven't participated because my replacement has been gone.

I really really miss my old life. I want it back, but am finding that nothing that used to work before does. I miss getting up, working out with my husband, going to work and being "on" all day, then going home and running five miles and then teaching a bootcamp. I miss "Do you want to run that marathon on Sunday?" being like an invite to coffee, "Sure! Why not?" Now I can't even reasonably say yes to an invite to coffee without doing a personal inventory of how I'm feeling, what I have to do tomorrow, how much will this wear me out? Is it worth it? (And I'm actually not joking; I'm in a group called Marathon Maniacs and have run 71 marathons since 2005, so literally if I have no Sunday plans and there is a local marathon, I'm there!)

Anyhow, that's my story. I know I went back to work too early and am still considering short term disability. I'm going to look on that over Spring Break next week. I find that lots of people want to listen, but no one who hasn't been there "gets it". This is like nothing that's ever happened before. I know how a sprain heals, I know how a surgery heals, I know that it's generally a very linear process, and even setbacks can be linear. Brain injury is NOT remotely linear. I can have a fantastic day one day, then need to leave mid-day from work the next. Monday was awesome....totally felt normal. Tuesday I left mid-day and the headache was so bad that not even morphine worked. I slept over 12 hours that night, stayed low most of the day yesterday and am doing on a scale of 1-10 about a 5 today, with a slight headache, and only a few spiders in my brain. (That tickly brain feeling I call "spiders".)

I look forward to getting to know people, and am interested in people who have progressed further than I have an how that's gone. We're all different, but it is at least reassuring to see someone back at their old life with vigor. Can't wait to get there...but really worried that I never will.

Tory

Hey Tory! Welcome!!! The people here are amazing and most really can "relate" to what we have been through, but they also have!! I am a bit ahead of you (December 30th) and was 19 days in SICU, 1.5 days in a regular room and home. I would like to tell you that my "extra" month of recovery has made amazing changes, but that would not be true! Everything is still exhausting. It still take so much extra time just to clean up around the house that I often find myself giving up on the task at hand. I haven't even attempted "exercise" other than walking at this point. I keep telling myself I will get into the routine, but have yet to even try it. Part of that is fear that the other aneurysm might burst or the coiled one might get a "hole" in it, etc. and the other part is that my body just doesn't seem to think it is "ready" for all of that.

I, too, tried to go back to work too soon and was left feeling frustrated when it overwhelmed me! I am now able to work the entire week but it is so exhausting that I have slept the past two Saturdays until 11:00 a.m. I just don't WANT to get up! It is very frustrating to feel great one day and think the other is behind you and then find out the next day that it was all a fluke, but we are very NEW in the recovery period I understand.

Above all the thing I hear is the "new normal" and I am not sure that any of us will ever be exactly as we were before so the "new normal" is who we have to learn to be! God bless you....and I pray that both of us, and the others here too, will someday have our "old life" back!!!

Tera

Hi Tera! We are now "stroke sisters". :/

As for exercise, I find I'm okay with light light lifting as long as it doesn't stress the back of my neck. I was doing 15 pound dumbbells but now it's 5 and no more, sometimes not even that. I just demo the move and let them do all the work. (Must admit, it was fun not having to run up the hills yesterday, but instead getting to stand there and yell "Go go go! Hills build buns of steel! If you can talk, you're not running hard enough!" I don't call it "booty busting bootcamp" for nothing!)

Anyhow, I did try to run a few weeks ago and found that the actual act was very freeing and felt "right" but every time I stopped, even for a stop light, I would get light headed and have to hang onto something. I ran to the store .8 of a mile and had to lean on a cart in the store the entire time. A car roared an engine and I went "blank" (not having that as much...sometimes something would startle me and everything would kind of go black for a few seconds, almost like a tiny shut down). Realized that as much as I wanted to run, it was not a good idea. I ran a total of 1.67 miles with a break in between and it put me in bed for 2.5 hours afterwards. Crazy as the day I had my SAH I ran 5.5 miles and when asked if I'd done anything extreme that day, said no!

Fortunately I've solved the house cleaning thing...it takes very little effort to write a check. ;) I have a wonderful house cleaner who comes once a week and sprays "anti-sty" and puts little triangle folds in the toilet paper and makes me happy. (Unfortunately this week I canceled her because I went home early sick.)

Yes, new normal...do not want, but don't suppose I have a choice, huh?

hi tory-tory tory tory-love your sense of humor your story is fascinating &quite shocking-apparently there are different levels of severity with the sah-every other line i did a wha,wha what?i.e. 3 weeks& back to work-Great,that's awesome,your worried you won't get your old life back & i totally relate i worked 13 years as a painter in a retirement home only to be told by my mortgage man-"i got the letter from your dr to give to the lender-it says your permantly disabled!!!!! wha,wha,WHAT? i was shocked-it was actually good news to get the mortgage they "like" to hear this to secure the loan,anyway i wish i could tell u i have healed 100% but i have not-i know u need a miracle story to inspire you.Maybe someone else can-hope so.my sah was almost 3 yrs ago,my family was told by the nuerosurgeon that i may never walk again &best scenario would be a nursing home for the rest of my life-but he was wrong! i'm home &I can shower,cook small meals,etcbut i can't drive.they say the first year you heal the most so u got time-if anyone gets back 100% it will be you.I'm sick of worrying if i'll get back to work-after 3 yrs I'm tired of worrying but i will never stop trying & i know u wont-keep up that great spirit & sense of humor.annie can't take that away -God bless you &yours- hope your headaches stop

Tory,

Can you indicate whether you were clipped or coiled?

I would recommend that you collect and keep somewhere safe all of your medical records related to your episode. If your short term disability becomes long term for some unknown reason you will have the necessary records, especially while everything is still fresh in the minds of those who treated you. You might also discuss with your Neurologist to have a Neurospych exam completed so that your deficiets are noted early on. As time goes on memories fade and recalling events becomes much more difficult. I know this because I am collecting all the records of my wife's rupture event 18 years ago as we now have learned what is causing her disability just in the last two years. Fortunately I know where to obtain the necessary records but many have been discarded by her specialist. They only need to keep them for 7 years.

Tory, welcome; and I compelely agree with Ed's suggestions...

I ruptured, was coiled, and was in 3 letter words a long time...

Healing requires rest...and, frankly I am shocked that a neurologist did not address the healing process; unless (s)he did not have your full records...And, this is all just my personal opinion; non-degreed and non-licensed.

I did rupture, and, unfortunately, coiled.

Prayers for your pursuing short-term disability and please consider the neuropsych testing for setting a baseline for you.

Pat

Housekeeper???? That SOUNDS like a wonderful thing to have, except I couldn't get my house clean enough to invite a housekeeper over!!! LOL!!! We are "sisters" through this and there are MANY of us sisters and brothers here. I was trying to explain to my husband yesterday how my body just shuts down and refuses to move forward and he tries to understand but just doesn't get it....I'm glad there are people here who DO...makes it so much less frustrating!!!

Tory...Your "sense of humor" will get you far in healing and at this site...hahahah...~ what did I say about George Clooney being good eye candy?

Don't overdo...truthfully your brain is still healing...it takes time...and rest...

Have a Beautiful day ~ Cyber~healing vibes your way ~ Colleen

Hi Tory- My, I thought I led an active life (well, more than most...) but you...well, I don't need to say anything-

I, too, miss my "old" life-- it seems like alot of people feel I should be "happy" that I survived, and not just survived, but am doing as well as I am- it seems to be a real miracle- I do have neurological issues that I (hope) my brain will be able to adjust over time.... I hate the fact that I can't even walk, like I used to- heck, I can't even remember what it feels like to "walk normally" (I have grown to "cringe" at that word, normal--what the heck is that?)

I try to go to the gym 5 days/week, work out with a trainer 2 days/week and go to physical therapy around once a week- I have really learned to listen to my body-

I also had no idea what happened and was in completed disbelief/denial for many months, especially for most of 2010..Heck, I still have a hard time believing that happened to me! (...also that I spent 4 months hospitalized! I became a resident of CA by virtue of being in the hospital so long---really!) Please look at "my page" - the story is a brief synopsis of my SAH and subsequent battle for life

Dana


I was neither clipped or coiled, and I only had one neurologist who saw me from day one when I went in. I do see her again on Monday. She's a renowned neurosurgeon, but as I've noticed from surgeons, many of them don't address recovery. I did see another one but can't remember her name, who was there to try to determine why I had such severe myoclonus and cramps. She was not a surgeon and had more information, and then there was a really good nurse practitioner who gave me good information when I first got there, but I don't remember any of them. I honestly don't remember much from being in the hospital except snippets, and one mad episode of Cupcake Wars.

Which means, they might have sat me down and told me soup to nuts what to expect with charts and everything. Roy doesn't remember that happening, but then of course he's the type who goes to the doctor and comes back with "Huh? Oh. Nothing. It's fine." where I'm usually able to quote, verbatim, what the doctor said to me. The information they sent me home with told all about my medicines, had a "heart healthy diet" (I'm 125 pounds and extremely fit), and information on hemorrhagic stroke but really all it said was "Don't expect to do too much too soon." This is why I went back to work (plus I was out of sick leave, although I did have some donated to me that rounded it out, thank heavens). I love my kids but really, I needed to not go back to work so soon.

My sense of humor definitely helps. It's hard to have one about this, but I did type this on a good day. Today is a not so good day and my sense of humor is hiding behind the wall. My headaches I get now (still) are all in the back of my head and in my minds eye look like a 2.5 inch thick wall that bisects my brain front to back. All my reasoning and thoughts are behind the wall and they have to make their way around the wall in order to come out. I hate it. Today the headache is about a 5-6 (on the 1-10 scale) so for the most part, they're able to make it around, but I did ask if the refrigerators in the dishes were clean this morning, and confidently stated that 10-2 is 7 to my students. (God bless them that they know I have the brain damage.) It's amusing at times, but it's so darn TIRING. I got to work today and before the kids came in, I laid down on the floor and slept with my dog (who was here for a spa day in our veterinary tech program).

Does everyone find that simple math can bring on brain pain? It's the most amazing thing, but right now even thinking about the math I did today (that HUGE 10-2 problem) gives me a headache. I suppose it's dependent on where the bleed was.

Wow Dana! Intense! I will go look at your page.

My walking looks normal for most people, but I was explaining to my PT yesterday that I feel like my left leg does not respond normally. Like I tell it "step over that" and I step WAY too high or way too low...so my proprioception on the left is all off.

I know I was lucky, but as I shared on another thread...I want to kick the next person who tells me I'm "lucky" in the teeth and say "Do you feel lucky? Well I didn't kick you twice. Really, it could have been worse." That doesn't mean I'm not thankful I'm alive and my impairments aren't major, but I would not say that I feel lucky. I think that what people don't get about this is that a brain injury makes you feel like you're not "you" any more. It's not even a matter of what you can't do or can do. It's a matter of not knowing what to do with the new you...like I can't run, so I'll walk. Oh, that put me in bed for a day. Okay, I'll lift some light weights. Nope, bed for a day. Work with a client? Nope. With a broken leg you know "I can't run, but I can still ______" but not with this when sometimes even watching TV is too much effort.

I don't want to sound whiny because I'm not like that...another thing I miss is being "up" all the time. But I am having a rough day today.

oh yeah-math is mind boggling -subtractions on the checking account are mind boggling at times-then to top it off when i built the addition & got the financing i had to do 6 digit numbers!!!!thank God for calculators!!& i don't have the 6 digit problem anymore-the contractors took care of that!!!What helps is for me to write real big but i think it's good therapy,oh yeah my brother in lawsmom had a stroke & she couldn't do math & her young grandsons would help her!!! I'll have to ask her if her math returned-she was always good at math!!!yeah 6 digits look really weird on your bank statement-hope they return also!!!Glad your writing in i think its really good therapy-have a grreat weekend everone!-ron

yes,Dana&Tory-thanks for sharing- i thought i was the only one-sometimes i think i'm lifting my feet real high & I'm almost dragging them-actually just the left foot anyonehave more pain in the affected foot?? i know i do cause about 2 years ago i was in therapy & they would ask me to rate my pain i didn't know what they were talking about-i'd say 0 or1-i think i was just super numb -&now the numbness is declining the pain seems to be more prevelent-nowi would say pain is7 or8 but i'm not complaining-i am the king of pain-not

Tory, If you didn't have clipping or coiling what procedure did you have?

Ron,

You would be surprised as to what goes missing. My wife's rehab hospital and in-house Neurologist tried just a Imetrix for her post-op migraines from 1994-1996. He then told her that give it time and the headaches will go away - they never did. Keep in mind that from 1994 thru 1999 there was really only one migraine med - Imetrix. Fast forward to 2009, we finally figure out what is precisely causing her migraines. She files for disability now that we have fact based evidence. Social Security informs me that her hospitalization and neurologist records don't exist so she is denied. I persistently kept after the hospital medical records and finally they were found on microfiche but under multiple record numbers. Here we are at 18 years fighting to get what she was due back in 1994 but no one kept records from that long ago. The point of all this is to advise aneurysm patient's famlies to keep and hold all records because time has a way of becoming hazy and forgotten memories and just the mere mention of a potential disability raises the hair on my neck. If I would have been some shumuck who decided to abandon my wife (and many do) after a brain hemmorage, I can't imagine the grave situation she would be in right now because she can't work. I might also add that I had a surgery that had a bad outcome but was purposely passed from Physician to Physician to buy time against any malpractice suit which I had no intention to file and run out the clock . I only sought to cure the post-op nerve injury I was suffering from. I ended up protected but only after producing the medical notes proving the injury but it was one hell of a fight. Many of the brain injuried don't have the ability to carry out retrospective analysis of their medical conditions. If I can help one more person with my advice, I can sleep better. Hope this helps explain my statement to Tory.

Yeah, that puzzles me too!

You can hemorrhage and have a stroke without an aneurysm. Mine was a weakened vessel that just popped. Might have been a small aneurism before the pop, but there wasn't any left that could be seen. That's part of the reason I am doing so well. I had two angios, but the damage to the brain was relatively minimal and I don't have the coil or the clip.

Tory,

Yes, wo a doubt; you are first one we know of (a friend's mother had one, but she was mid-80's).

What was done for healing? Was a Pipeline (PED) or other stent implanted? Or, were you left for a natural healing?

The daughter of friend's of mine, had blacked-out at/during her exercise (which she had been doing for years); she was in another hopsital at the same time I was! She was intiially determined to have an aneurysm; and, on her second angio, it was not visible; and, she had not hemorhagic bleed... so it is like it "retracted" on its own...Karen did reduce her exercise and has not had any symptoms return..

You've brought a whole new subject here....

You have been blessed; many prayers for continued recovery...

Pat

ed-sorry to hear all your dificulties with ss,i was competly nieve about your situation- i was permanently disabled & got ss,i should count my blessings but my comprehension is not good so i deleted my comment(sounded a little judgemental or rude) i try to compare my story to others,hope you didn;t take offense- again my apologies.My hat's off to you for fightin the "good fight" Your wife is fortunate in that regard-your love, loyalty &perseverance-thanks for clearing the air-i get frustrated when my compehension is on the "fritz"i'm guessing i don't need my med records since i already got my ss-good luck & may God bless you & yours-your friend ron