Teechur

I'm laying in bed, where I've been since about 1 this afternoon, with yet another headache. Well, the same headache but a bad head day. Fatigue, burning ears, tingling scalp, and low concentration with short temper. I just sometimes feel like I can't imagine going on like this. Yes, I know I'm "lucky" that it isn't worse, and I do feel very blessed that I have good periods, and that I can do all that I can do. I am just so very very tired of making plans and then having to cancel. It's the end of the school year, so things are insane. I have a field trip to an arcade tomorrow (loud music, lights, Im bringing my headphones), after that we have a LAN party that runs until midnight. I am registered for a race that starts at 7:30 the morning after. It's a practice race for my half marathon class, so I am meeting them at the halfway point and running in with them, then driving them back to their cars. I have two weeks left of school and in that two weeks we need to reimage all the computers in my class, set up the other classrooms for the summer school courses, I have to grade my finals, and of course close out my room. Summer starts and I am scheduled to teach up to three fitness classes on three days of the week. Why did I do that? Because when I had to make the decision in January about my summer program, I was optimistic! Yet I have had absolutely NO reduction in pain or frequency of headaches. I am just so tired of having to cancel plans, or having the inability to cancel plans and having to suffer through things. One of the things I let fall by the way side is setting up the programs for the Fall/Winter and part of me is saying "Good...maybe it's time to close" but then that's my business. I can't close my business. I love what I do. I'm just so exhausted and frustrated. I have to admit I am not embracing this new normal. I don't WANT a new normal. I can't figure out what the lesson in this whole thing is, although I have a suspicion it might be "You are not in control, so let go." Kind of hard for someone who has been a Type-A control freak for 48 years. I literally have zero desire to slow down or change my life. My perfect day would be described as busy, physical, and challenging. Yet here I am, another day in bed. Sigh. It isn't that I want ideas, I just need a place to vent where other people understand. I know a lot of you have embraced your new normal. I just don't like my new normal and I feel like that makes me look like a child having a temper tantrum. My neurologist no longer says he thinks my headaches will go away. I think that right there scares me more than anything. What if this is it? What if I'm stuck for the rest of my life in this limbo where I am not really ill or handicapped, but I'm also not able to perform at the level I desire or my life requires?

Recovery from an SAH is maddening. It's not a linear recovery unlike other health issues. So glad it turned out to be nothing, and that everyone here was able to calm you. I am also very glad that you have such a responsive GP. That definitely helps assuage the fears!

Gill, I take Amitryptiline too. Do you take it for headaches? That's why I take it but I'm not sure it helps at all. It definitely makes me sleep HEAVY. If I take it too late I can hardly get my eyes open the next day. I used to sleep 5-6 hours a night and be cool with that. I'd get up at about 4:30, be at the gym at 5:00, swim or lift for an hour, then shower and off to work. Right after the SAH I needed a LOT of sleep, often. Makes sense since recovery happens during sleep/rest. I was dealing with restless leg syndrome for about a month and I think the Topamax might have brought that on. I was taking magnesium supplements as needed so I wasn't doing a jig in my sleep every night. Once on the Ami I have only had it (RLS) once and it wasn't bad at all. I look forward to getting off the Ami. I would like my old sleep patterns back, please.

That is fantastic, Mary! Things we used to just take for granted are now such blessings. I didn't drive for about 6 months outside of down the street to the park or something. I remember driving to work in September and feeling so free. I love my husband, but it was nice to be alone in the car. He still drops me at work if I'm having a bad head day, but not bad enough to put me in bed. The one thing I hate about that is that I have to get there an hour early and stay almost an hour later., I always get a lot done, though.

Bless you Lynn and welcome to our little corner of the net! Definitely this is a long recovery and it can get us so down sometimes, but the positive spirit is essential. You had a long haul in the hospital! I bet it feels so good to be home. I still remember being there like it was yesterday. I had excellent care, but wow I couldn't wait to get home to my husband and my dogs. I only was there three weeks! I don't know how I would have made it through with my sanity intact had I not found this site! Everyone on here is so wonderful, and just having others who understood was a HUGE benefit.

Hahaha Mary! I love you. You make me smile at least once a day. (We are FB friends.)

I am definitely having moments of forgetting. The main remaining issue is the chronic daily headaches. There are good days and I feel like the old me, but when the headache comes back it feels like I just come crashing down. I am very VERY thankful for good days. Even with the daily headaches (they vary in intensity) I still do more than most people do but I miss the old me where I would get up and go to the gym, swim a mile, go to work, come home and run 5 miles, teach bootcamp. I can't do that any more because I can't use up my spoons in the morning before work. It just is so defeating. I keep saying "I am so over this!" Guess not! LOL!

I also had no risk factors outside of the xx chromosomes (slightly higher risk in women then men). I always say I had a brain hemorrhage. I used to weigh 100 pounds more than I do now. I am a long distance runner (76 marathons or ultra marathons since 2005), a personal fitness trainer, a weight loss and wellness coach, high school teacher, and am extremely fit. Don't drink or smoke, never have. Sometimes it "just happens." I did use stroke at first because it was easy, but it also tended to scare others as in, "if Tory can have a stroke, what about me???" I just tell them that it can happen to anyone, but the blessing of being healthy going into it is that there was only a single issue to deal with (the SAH, no underlying problems or other illnesses to contend with), and perhaps I might not have made it had I been dealing with high BP or heart issues. What we had is sort of a kind of a stroke, but there is not a blockage. We leaked blood into the cerebral spinal fluid and damaged the area surrounding the bleed.

Another teacher! Yay! I know just how you feel about coming here and finding out "Oh good. It isn't just me!" That was how I felt. I thought I'd had a little thing, nothing important, and that I'd go right back to work on Tuesday after a long weekend. I got out of the hospital on Monday. Went back two weeks later and never made it an entire full week all year last school year. Had to go back on medical leave in late March (SAH was Jan 28). So our experiences parallel to some extent. Neck--yes, moreso earlier on about the time you are in recovery. I still get times where my head feels extra heavy, or like it might just topple off my neck and roll under a chair (which might be an improvement). It gets better. As for teaching with this, I don't know about you but I really felt like I've been letting my kids down. I teach high school college level IT class. It's a half day program for students who want to work in Information Technology (nerds, I am the nerd herder). Last year I returned before my brain did, LOL, and I'd literally be talking to one and lose my train of thought. I would just stand there and stare. I joked about it, told them my brain was rebooting, but it was disconcerting! This year I'm out of sick leave so trying to work every day if possible. Today was a hard day but I felt like I did a great job for one kid and that makes me feel good. Blessedly I have a supportive administration. I worry, though that at some point they will say "Okay, we really need you to be here every day." I feel like they don't know the real me because both of my administrators were new last year and hardly got to know me as the high energy, awesome, hard working teacher that I am.

I am so very sorry, Rachel. There is no reason, sometimes, for these things to happen. I had mine at the age of 46 and I am/was exceptionally healthy. I run marathons for enjoyment. Yet in June an acquaintance, who also runs marathons and ultra marathons, had a headache, went into the hospital and he never went home. He was 44, in fantastic shape, and he left two little girls and a wife. I had survivor's guilt over it. When I was told I cried for a few hours. It's just not fair. That doesn't change the outcome, but it isn't. At least her last moments on earth she was laughing and enjoying her honey.

I had BAD sweets cravings. One of the things I ate almost every day for the first few months was Peeps. I don't know why. I do know that one of the headache medications I was put on (Topamax) made everything taste horrible, especially soda (you can't taste the carbonation but you can feel it--really strange). The worst part is that it made coffee taste bad and my blood is half coffee. It was horrible (although I did lose 7 pounds while I was on it because I didn't want to eat). (Un)fortunately my next medication made me regain all of that within a week, plus 4 more pounds.

I didn't lose consciousness. I was standing in the lobby of a movie theater and it felt like someone had hit me in the back of the head with a 2x4. I went into the theater with just screaming pain, and when the movie started it hurt so bad that I doubled over, choked back vomit, and thought right then I might just die.

Like Mary, I don't have any wise words. I'm about 16 months out and still deal with daily chronic headaches (I wish there was a more descriptive word). It has changed my life dramatically. I don't feel like the same person and I miss that old person. I was pretty sure I was going to be completely back to normal within a month or two, max. Because of that I think I had a much harder time accepting the fact that I had been through a serious health crisis and it wasn't going to be over any time soon. I am more to an acceptance level now. I try to be sure to do what I can on good days and enjoy every moment of it, and feel no shame in saying "I'm having a hard day". I'm still trying to do all the things I used to do before the SAH (full time teacher, run my own small business as a running coach, personal trainer, and fitness class instructor, as well as do my own exercise). Some days I can do that with little slowing down, other days it's take to the bed, try not to think about the money I'm losing, but rest rest rest. I think you should at least go see your GP. Most major medical issues do carry with them emotional and mental impacts that can be longstanding and can make the physical symptoms more of a challenge. PTSD after a stroke or SAH is very common and talking to your GP or a neurologist can go a long way towards helping you figure out why you're still feeling this way, and how to move forward.

I don't think there is any "wrong" way to celebrate or not your SAHnniverary. Mine was Jan 28 of this year and I'm not really sure how I felt about it. When I had my SAH I suffered from being the Queen of Denial. I wrote emails saying "It's nothing serious. I will be out of the hospital in a few weeks. Fortunately I feel fantastic." Not sure who that woman was, but that wasn't remotely the truth. Even when I got out my expectations were that I'd go right back into my old life 100%. I've always been a "Let's just GO for it!" kinda gal and I thought I could do the same here. Ha! Nature has a way of saying "Neener" when you least expect it. I am thankful to have lived, but don't understand why me and not the guy from our running club two years younger, just as healthy as I was, didn't. He left two daughters and a wife. I would have left 3 dogs and a husband. I still do question the purpose of it. I had had a big health issue earlier in my life and it was both the worst and best thing to ever happen to me (pancreatic pre-cancerous tumor). I learned to never put things off, that the body is an amazing work of art and we have the responsibility to feed it the best food and move it every day. I never ever took my health for granted after that. It was a full year of recovery but the recovery was very normal (better today than yesterday all the way through). So yes, I get it. Why us? I know--why not us? What's the lesson? I got the "take a bite out of life" lesson, so far maybe the lesson is "be patient, you're not entirely in control, so stop being so controlling" or maybe there IS no lesson. And like others, I thought by one year it would just be something bad that happened a year ago, but instead it's something bad that I'm still recovering from. We may never know why, and there are days when platitudes are meaningless (yes, I get that I'm lucky to be alive...if you say that one more time I'm going to give you the same experience if I allow you to live). Other days we're the ones saying "Such a blessing to be alive and out here and able to do what I can do!" And like celebrating an anniversary, I think we should feel okay with feeling whatever we are feeling at any given moment...good, bad, angry, sad, thankful, ticked off. It's all okay. After all, no one would ever tell us to heal physically faster or in a certain way, so there is no reason we should be pressured to heal emotionally faster. This entire thing was a mind-blowing (heh...truly no pun intended) experience. In a way it's has made me fascinated in the way the brain works. In another way, I'd just as soon go back to running every day, teaching, running my coaching business, sleeping 5-6 hours a night, and travelling all over the country for races...please and thank you.

I completely agree. I think it is ridiculous that if you're ill in the US you need insurance or you can go without treatment, but you can't get treatment unless you have insurance, and you can't get reasonable insurance unless you have a full time job. I do hope the Affordable Care Act will help and that in the years to come, they can move closer to a single payer plan. I was listening to a man on the radio the other day who used to work as a Lobbyist for insurance companies. He had a crisis of conscience after watching the companies WORK to deny coverage to people who had paid their premiums. He just could no longer do it. He realized that the way we do health care (or really, sick care because until the ACA there was little coverage for wellness care) was not only bad for the nation as a whole, but that people he loved were being impacted by it and he was helping the companies try to push legislation that was in the best interest of the corporate profits. He was actually one of the authors of the AFA. I had scans on all of my arteries a few months ago because I have Fibromuscular Dysplasia (discovered during one of my angiograms). It was in my best interest, but also the insurance company's to determine if it was present in any other arteries. It was only in the vertebral and internal carotids, but it's most common in the renals and can lead to renal failure. I paid the lion's share for that even though I have fantastic coverage, supposedly. If I didn't have it done and my artery resected and I didn't die, that would cost insurance so much more than the cost of the scans. Yet they determined it was not necessary and thus wouldn't pay for most of it. Just paid the office call portion. They aren't interested in making sure I stay well, they are interested in making sure they make money off of me. That's just plain wrong. Ah well! Life goes on and the blessings outweigh the frustrations by far.

My body is an oxymoron (no cracks...). I really think it's the mental stuff that gets me WAY more than the physical stuff. This weekend the weather was GREAT on Saturday. I woke up with just a small headache. I had registered for a 12 hour race--yes, that is what it sounds like. You run or walk for 12 hours. I completed a total of 42.71 miles. Yet later in the day we went into a "Brain Puzzle" shop and trying to puzzle through some of the activities (the shopkeeper was showing me some games and I didn't want to be rude and say "You're giving me a headache!") made my head immediately start hurting. I know you all understand, but others are like "What?" Yes, it hurts to think sometimes. Sunday the weather was overcast and the barometric pressure had dropped. If it was just "all in my head" I would have been GREAT on Sunday because it was my birthday, I'd slept well in a hotel bed (Westin--husband gave me the "gift of sleep" after my race), and we were just chilling. We went to the EMP (Experience Music Project--sort of a music museum) and the Sci Fi Museum (where a child was overheard referring to tribbles as "What are those puff balls for?" Poor poor uneducated child). We had to go home early due to my stupid headache. Today another weather change and right now my head is exploding. I should stop using the computer as it does not help. Because physically I can do a LOT on a good day, I doubt anyone would feel I qualify for disability. I do think that part of the reason I can do a long run like that is endorphins, which unfortunately don't show up during a teaching session. I have been watching the online high schools for jobs, but I don't think I'd enjoy that as much. I like who my kids are and how I get to know them, so I don't know that I'd enjoy that online lack of personal relationship.

Things I miss: 1. The ability to be completely spontaneous. 2. Being thought of is the "one who had the stroke" and not as the crazy lady who runs multiple marathons. 3. The feeling that my best years of new things were ahead of me and I could do or be or try anything. Things I like: This is hard because I will admit I have been dragged kicking and screaming to acceptance and I'm still not there yet. 1. Having an excuse to slow down when I just need a break. 2. Less of a feeling of needing to prove to everyone that I'm the best. Not going to be the best, so no point pushing too hard. 3. A greater understanding and feeling of being in touch with my body. Since I'm very athletic, I have a good understanding of my skeletal and muscular system, but now I know a LOT more about my brain, nervous system, and all of that. I've enjoyed learning more about my body.

Michelle I wish I could go down to half time. That's actually been my dream for a long time, but it WAS half time teaching, full time as a personal trainer and weight loss coach. Now I'd like to go half time just to make it through the week intact. When we were on a cruise over the summer with no schedule outside of eating, and I was able to rest if I wanted, run if I wanted, see a movie if I wanted, I was so much happier and healthier! Well it isn't like I'm not happy now, and of course we probably can't live on a cruise ship. I never thought I'd want to have the option to slow down, but now I do. I'd really just love to get back all my energy I had before. If this does continue past year two, we may have to discuss part time teaching.

I always say that they are trying to kill me with brightness. It's kind of sad, though, because one of my favorite things to do was to stand outside, face to the sun, eyes closed and just drink in the sun. If I do that now it hurts so bad. My friend took her son to Disneyland for the first time when he was a little guy. She convinced him to go on a ride, it would be fun! He hated it and said "I don't want to be on this fun ride any more!" That's how I feel. I don't want to be on this fun ride any more.

I remember my neurosurgeon mentioning that she had read a study that people who had had an SAH could be more sensitive to changes in air pressure. It's gotten so bad we've talked about saving to move. Like most people in the US right now, unfortunately the housing market is so poor we'd have no equity so we'll have to wait.

Blessed is what you are, Dan! Well, we are all blessed because not everyone walks away from this. My very first thought when I read your post we "Small airplane? My head would explode!" since pressure changes are very painful. But really, I stay pretty active; work full time, coach runners (adults, new to running), and teach bootcamp. I just try to take the good days and go with them, and as much as possible when the body says stop, I slow down and rest. Welcome to the club...we're VERY exclusive. We don't let just ANYONE join, you know.

That's wonderful Mary because your name is a mouthful! I always want to give a gold star to anyone who manages not to turn me into Kelmensteen or Klemenstine.

I normally HATE being cold, but the ice cap helps immensely. I am always cold, especially hands (I have Reynaud's Syndrome) and I noticed that I was always putting my cold fingers on my head whenever it got bad so I decided to spring for the ice cap. It was recommended to me about 8 months ago but I didn't want to spend the $41. So now when I use it at home I put it on and get under a blanket. I think I'll try the heat tonight too. At work today I got the nurse to give me an ice pack and it made work more bearable. Yes, when days are really bad my balance, thinking, talking, it's all impacted. LOL and while I may be guilty of Workaholic, I'm pretty sure I'm not an ALCOHOLIC! You guys made me laugh and smile. Thanks!

Oh and thank you for the heated bean bag idea. I've been doing an ice cap, but I wonder if I alternated the two if that would work. I have a fridge and microwave here at work. I can't lay down with the one on my eyes, but I can at least try the bag on my head. (Kids are used to me looking like a fool. Doesn't phase them at all.)

I try to roll with it too, but there are times it puts me in bed. I take Amitryptiline but I don't think it is helping. I think the next thing my neurologist is going to try is Botox. I went to the ER last week, it hurt so bad. Can't roll with those headaches. Drives me crazy that none of the doctors I've seen have acknowledged that my headaches are very serious or related to the SAH, yet I have a friend who had hers 6 months before me, both of us share the same types of headaches with the same triggers. I think it was my last appointment where finally the doctor said "So you get headaches daily?" "Yes, I have maybe an hour or two of relief once or twice a week, but otherwise it's all day, every day." "And bad headaches three times a week?" "Yes. At least one day a week, but usually 3 days." Really? I have been telling you this for a year and you're just NOW figuring it out? I think it's because I moved to another doctor (who said all of my problems were from running and I needed to stop--besides, I was GETTING TOO OLD TO RUN). I think he understood that I was seeking a second opinion because of the severity of the pain. Look, I run ultra marathons for fun. There is no small amount of pain involved in that. I am not a pain wimp. I work as a full time teacher and running a fitness business on the side. I'm not some wilting flower taking to my bed with a case of the vapors. I am a healthy, hard working, driven woman and my life is severely impacted by headaches and I am SO OVER IT!