Teechur

I don't mean to harsh your mellow, and everyone is different but I'm over six months post SAH and I have had a headache every single day since Spidey-Fest (my special name for that special day).Nothing seems to help. I'm a teacher and I went back to work way too soon. Love my kids, they're the greatest (high school nerds, mostly boys), but they just sucked the energy out of me). I agree with Carl, I wish someone had given me "permission" to stay out of work longer but my doctor on releasing me said "Do you want to go back to work Monday?" so I thought that meant I was good to go back to work Monday! I ended up going back a week and a half later (because after one day I realized there was NO going back to work Monday and called her crying). Then saw another neurologist who had me take another two weeks off and half time for two more weeks, and I still didn't make it through a full week. Thank GOD I have amazing staff mates who donated sick leave. I have told my doctor about my headaches. Initial reaction was "They'll be gone in 4-6 weeks." Then it was "They should be gone by now, so I'm sure they'll be gone soon and I'd rather you didn't take anything." Okay cool. You're not the one trying to think around this giant ball of pain every day. Finally I got Topamax and was told it would take a month to kick in. It's been 6 weeks and it isn't doing anything for me. I have another appointment on Friday and will PRAY that he has something else for me to try. I'm on summer break right now so at least I can take each day at my own pace, but it hasn't diminished the headaches any. I did have two good days this week, but today I'm sitting around a level 6/7 all day. Prior to Sunday and Monday I had 8 days in a row where I didn't fall below a 6 and a few days where I considered going into the ER just hoping they'd give me something so I could have 3 or 4 hours without pain. Like you, super duper active, Type A, teacher, run my own coaching and personal training business. I'm an ultra marathoner so I have a SUPER high tolerance for pain. (Trust me, you run 50 miles without stopping, you learn to live with pain.) So just putting it into the context of "I'm not a whiner and I'm doing everything to fight succumbing to being 'that person' who is defined by her affliction." (Not that I'd say that of anyone here.) I have a friend who had her SAH just over one year ago, younger than me, an ultra marathoner, on her honeymoon, about the same size (both of ours were pretty small, good outcome expected), and she still gets daily headaches although they have diminished in intensity. She's back to running marathons. I have been able to walk a half marathon (two weeks ago) and have walked a 5k and am going to try run/walk a 5k tomorrow. I have been walking about 20 miles a week lately, so it feels good to be getting back into a fitness routine. It is discouraging that she's still dealing with headaches, but at least she's back doing what her and I both love to do...running.

Well personally, Cat, I think it's okay to be ticked off because it's not fair. I'm a little older than you (47) but really in the best health of my life. I used to run about 50 miles a week and in a split second all that stopped so I TOTALLY feel your pain. I wish I'd had the opportunity to take more time off. I think that would have helped with the healing because when my second neurologist saw I went back to work a week after getting out of the hospital (so four weeks after) he literally said "What don't you get that your BRAIN BLED?!?!" and made me take two more weeks off. I didn't know! My first doc said "You want to go back Monday?" on my discharge day (Thursday) and I'm like "Uh, okay!" Well one day out and I knew that wasn't happening so took another week on my own (called her sobbing) "I can't go back...so tired...can't do it..." I was freaking FALLING DOWN multiple times a day! Not in the hospital because I was IN BED and when I walked I had an IV pole and someone's arm to take. Okay I'm getting worked up. (calmblueocean calmbllueocean happy place happy place). Anyhow, I know that on days I'm stuck inside I do get a bit (okay, more than a bit) depressed watching my athletic friends post about their races and their workouts knowing that if I am having a good day I'm limited to a two mile walk, using a jog stroller (and honestly, I love it). But on good days that doesn't depress me because it's a GOOD DAY. On bad days I don't WANT to be out there because I feel like . We'll all get a do-over, I pray. And I know we'll never take another good day for granted. We get this blessing of knowing how much people care. But right now, it's okay to feel whatever we need to feel at any given time and if someone else doesn't like it, that's THEIR problem, not ours.

I'm on week five now and so far no love, but I'll see my doctor in two more weeks, so that will have been seven weeks and I think that should be enough time to evaluate it. Today's headache started out very light and I was doing the happy dance, but now it's back up to a six. I'm still happy because I took my student to Gameworks (video games) and tonight we're here until midnight (in my classroom...fortunately I have the quiet room) so I am not surprised it has boiled up a bit. So glad it wasn't like yesterday (all day in bed...what do you call it? A duvet day?) A "friend" had the audacity on FB to give "It could have been SO much worse, Tory! Geez!" get over it comment yesterday. Fortunately one of my rabid real friends chewed her up and spit her out, then ran over her with a truck, threw her in reverse and ran over her again. (Not that I condone that sort of thing, mind you.) But that's kind of the thing that irks me. Yeah, I know. I get that. Yup! Could have been and you're right. I should be skipping around (holding my painful head, picking myself up off the ground every third skip because I'm such a klutzy little nut), and tossing rose petals over my shoulder singing the Hallelujah Chorus no matter HOW I feel! What is the MATTER with me!? The nerve! Good things today...no sunglasses indoors, lower headaches, actually had an appetite (Topamax takes it away and I've eaten less than 600 calories a day the last two days, which isn't great) and enjoyed pizza and a sandwich, kids had a great time, ran into a friend in Seattle out of the blue (we live nowhere near each other, but are both athletes and "run" in the same circles so we never run into each other randomly in "real" clothes), and Dot (dog in picture with me) is here with me tonight along with my husband until midnight hanging out.

LOL I know all ya'all would understand. Why can't the doctors just say "We don't know how long it will take for you to feel normal again, so don't put a time limit on it. Let's see each other again in xx weeks and lets evaluate where you are and take it slow because we want to see slow and steady progress."?? Is that so hard? Actually that is what my PT says. He's not a doctor, but of course he works closer and more often with patients. My last doctor's appointment I got topamax and "come see me in two months. That should be enough time to see if this will work." Yikes! Two months? I moved the appointment up, though, because the headaches are still debilitating. I only have five days of school left, yet I'm home sick AGAIN today. Oh well. It is what it is. Still looking forward to summer. We did get a tandem kayak so we'll do that (make the man work harder this year, normally even in a tandem I'm captain).

I was on a support board on Facebook the other night and they were posting the stages of grief, which I appreciated because I think we all go through that. With me I went through things a bit bass ackwards because I didn't get it at first and kind of accepted it very early on as just this 'little thing' that happened to me and I was going to breeze through and handspring out of, sticking a perfect 10 point landing ta-da! So right now I'm kind of in the anger "I hate my life stage". Not all the time, of course. I tend towards being that annoying Pollyanna type who generally looks on the bright side, but I never dreamed it would take this long, or I'd have an 18 week headache, or be looking into summer still with major limitations on exercise (which for me is huge as I'm a fitness trainer and coach and has resulted in having to cancel my summer classes). We've changed vacation plans because Disneyland (favorite place) sounds painful, flying sounds excruciating, etc. Not allowed to run, bike (balance), swim (balance, vertigo), kayak (exertion), trail run, bootcamp, etc. my summer IS all those things and more. But I digress. Anyhow, so I share on this site that I'm in the anger phase and I'm frustrated that my old life is temporarily gone and from the (moderator) I get a well intentioned "what we lose sight of is that we are still alive." You know what? I get that. I know that. I understand I am blessed to be alive. You think I haven't read the stats? Do you think I haven't prayed thanksgiving numerous times? Haven't felt guilt because I am angry? But at the same time grieving a loss is a process. Why does everyone tell me to slow down and not rush my physical healing, but damned if they don't want my emotional healing to be done right now. Everyone I have dealt with (a good friend recently suffered a skull fracture and is dealing with very similar symptoms) I have said, "it is okay to be mad. It's not fair. We have the right to be angry. We don't want to wallow in it for the rest of our lives because that's miserable, but feel free to cry when you need to, laugh when you want to, and just feel whatever you need to feel at any given time. This isn't easy and trying to deal with brain injury and please others with your emotions is just way too much!" I know others on here had a worse SAH and I do have guilt because I am angry right now, but I left the hospital with, 'go back to work next week, no exercise for a few weeks, you'll be fine.' When I was still having headaches 8 weeks out my neurosurgeon was perplexed as if that never happens! Made me feel like I was wrong or hypochondriacal. I had to ask my new neuro (who at least was NOT surprised I still had them at 8 weeks) for medication at 12 weeks and he doesn't want me taking pain pills despite pain every day. Holy god people! I'm going insane and I think I have the right to be ******!

Lisa I know EXACTLY how you feel...I'm right there with you, but I've had some glimpses of the old me so I know she's there and she'll be back. So will the old Lisa. She might be a little different and might redefine some of her passions, but that's okay. It's just part of the evolution of you.

I'm so sorry Carl! My boss just took the letter and said "Okay! We'll work it out." My doctor put me on two weeks off then on half time, and it's up to me to decide how that half time works. That is how it should be! You know they're just trying to push you out early. Grrrrr.

As someone who was very VERY high energy and now is pretty sedentary due to my SAH (which happened in January of this year) I can tell you that I look fine. I might not look tired, but the effort it takes to initiate something can literally "hurt". I know that sounds odd, and to me it is odd. I go between accepting it and being angry with myself that I know I need to do A, B, and C and I have the time to do it, but I'm not doing it. The fact is, when I try to force myself into an action that isn't laid out before me, I don't do a good job because my brain cannot actually wrap around it. I'm very intelligent; an IT teacher who can explain to my high school students how to subnet a network and get them ALL to understand it...but at the same time I can sit and look at the kitchen not able to make a decision about lunch. The difference is, my curriculum is written (I wrote it myself and have taught this subject for years) and the PowerPoint is right there and it spawns me to action...to give the lecture in a clear way. I am going to be tired afterwards, but I don't have to bring up the energy to get started because I've laid out my curriculum very clearly. (Thank God! I happened to have had a long term illness in 2003 that took me out of the classroom, and since then I have been very clear on my curriculum 'just in case' I can't teach for awhile.) But lunch...too many decisions, and it's a real challenge to put those things in order. Same in the bedroom department. I want to initiate, but honestly it's that "getting started" thing again. There are times when I am clear and I can get SO much done...it's amazing. Unfortunately those times are few and far between. This makes it challenging as a teacher and a small business owner. Not a help, just an explanation. I would say that he is what and who he is right now and you can either fight against that and be irritated, or just accept it and move forward as a couple. Nothing wrong with being frustrated, but unfortunately it won't change his behavior. Sickness and Health sometimes is challenging, isn't it?

Just a quick update. Saw a neurologist on Wednesday and he felt I had gone back to teaching way too early, and the amount of stress caused by teaching and my side business is slowing my recovery. I have nothing "wrong" with me, just need time. So he took me out of work for two weeks, and then I go back half time for two more weeks and we evaluate at that point. I can't tell you what a relief that was. Not only because I did feel work was slowing me down, but because he acted like something serious had happened to me, where my neurosurgeon (I felt) never really did. She just said "Take it easy for a few weeks". She asked if I wanted to return to work the Monday after I was let out of the hospital. I didn't know what life was going to be like after I got out, so I agreed and realized that I couldn't do it, so postponed it for a week. She felt I should be completely recovered by eight weeks and was surprised I wasn't. I am so glad I "met" this board of wonderful people because it helped me to advocate for myself and seek a second opinion. My new doc said all the things I've been reading; I'm early in my recovery, I will get better but it takes time, rest is my best friend right now, I'm overdoing it. So since last Thursday (my first day off) I have rested, napped, and not doing anything more than go for walks (which he said was the best exercise right now, and all he wanted me to do). I am in touch with my kids. My sub did call me Friday (and I was kind of irritated...you are doing the job right now, so do it...what don't you get about me relaxing...well I think she doesn't get that problem solving is REALLY brain intensive, and it's SO much harder by phone). I just hope to start recovering again. Feel like I was doing the roller coaster thing, but making some headroom and it just stopped about 3-3.5 weeks ago.

Good for you, Mary! Perhaps you need to remind them that not everyone they are dealing with has the capacity to drop everything. I would explain, if it were me, that I had a stroke (or brain hemorrhage...I find those make more sense to people) recently and that means that I am not firing on all pistons. I would also point out that it seemed like he turned abusive when you wouldn't do the $1000 worth of work that your mechanic said didn't need to be done. They do make most of their money in the repair department, so that's why they push it. I'm sure no small part has to do with the fact that you're a woman. Want to lose my business, go right to my husband when we're shopping (as happens all the time if we're looking at anything related to technology...and I am the IT teacher. He knows NOTHING about computers.)

Welcome John! I had mine on Jan 28 and this place has been a godsend! I can't see your original post, but I'm sure it'll show back up. Finding something you CAN do right now and feel good about really helps. I started a sourdough starter before I had mine. I managed not to kill it while I was in the hospital (I gave my husband instructions for feeding it, apparently). I am NOT Suzy Homemaker by anyone's stretch, but for some reason bread baking has been very therapeutic to me. I think it's because when I got out I could follow simple, linear instructions. In fact I got a little obsessed and we had sourdough bread coming out of our ears. Hey, it felt good to beat up on some bread every now and again and watch the "mother sponge" grow. I am finding it helps now to focus more on what I can do and try not to be too disappointed about what I can't. Today I can say that. Tomorrow I might very well be feeling sorry for myself again. (I am a teacher full time--off right now to try and recover some more-- and a fitness trainer/running coach to adults so my life WAS very very active and I miss that. But right now I'm focusing on "Can I get out for a walk today? Yes, then that counts!") You're going to like it here! If I hadn't found this group I would have gone nuts ages ago.

Welcome Tim! I had my NASAH on January 28 and I am SO glad I found this. I was released from the hospital with literally the words, "Take it easy for a few weeks. We'll do an MRI in six months." I had no idea what I was in for, what had even really happened. I was standing at a movie theater, suddenly was struck with the "worst headache of my life" and life has changed dramatically ever since! Fortunately I found here and I found some material from some UK resources (I'm in the US) and they described, to a T, what I was experiencing. "Take it easy for a few weeks" doesn't really cover all of the things you end up experiencing during recovery. If I never had found this I would have literally thought I was going crazy. No one I know personally has had this experience (a few friends have had strokes and one was a similar situation but caused by a vasospasm when he was in his 20s). Some treat me like I'm made of glass. Others treat me like "What? You're fine now, right?" Through these people I learned to advocate for myself. I saw a new neurologist last week who took me out of work (I went back after four weeks to teaching full time), told me to drop my classes I teach (I'm a teacher and personal trainer/running coach), and said REST! "Your brain BLED! What don't you get about that?" were his words. Wow, now if only my original doctor had just said "Your brain bled. You must take it easy! You will recover, but it will take awhile and the more you push it, the longer it takes!" What a concept! you're going to like it here!

For some reason I have been fascinated with true crime and true medical shows since getting home. I think it's because they follow a certain pattern and it interests me, and if I fall asleep...no biggie! There's always a new murder or something on in another 20 minutes. When my doctor told me to take off two weeks my husband said "Wow! Now you can stay home and watch Discovery ID all day every day!" I did find a show yesterday that was fascinating, but found I could only listen and not watch because it had too many quick cuts and "fake" TV interference. So I put in my ear buds listening to it and took a nap while episodes played on Netflix. Maybe I'm just a glutton for punishment, although I really prefer NOT to watch the news. Maybe it's because the shows I watch all are resolved. Most of them actually catch the person who did it. The news doesn't work that way.

David I am so sorry you started out with a good day and it ended on a sour note. A few things I've started doing that helps; carrying sunglasses and foam ear plugs or even just ear buds with me. In stores or even at work I wear the sunglasses when my head is bothering me. I find bright lights, particularly fluorescent, just drain me. One of my friend who had a stroke 16 years ago says he still can't handle fluorescent lighting and wears a ball cap all the time. He owns a running gear/shoe store, so he can get away with it! I just wear my sunglasses indoors and pretend I'm too cool for school. I know we'll get more good days...I've had two in three months (we must have exploded around the same time). I was so excited because I thought that meant I was getting better. I think it did, but it wasn't how I expected it. I'm actually not feeling horrible today. Woke up with headache but decided it wasn't bad enough to keep me inside (weather is AMAZING here today). Got some Costco shopping done when they first opened (much easier, way less people) and then sat in the car while Roy got other stuff. I still use a cane out in public because I can misstep too easily and boom, I'm on my behind. Plus it kind of warns people not to get too close because it's when people get too close that I get kind of nervous that I'm going to be knocked over. When we got home I was tired, but decided I wanted to go on a walk in the sun anyhow so Roy and I walked 3 miles. I used my nordic poles and it felt good. Then I came home and took an iced tea into the bedroom and rested for a few hours. Friday I went out for a walk alone (with my dog) and when I got back my neighbor teased me about the poles (How is the skiing today? Ha. Ha. Ha. Ha.) It embarrassed me, then it made me mad. I was feeling so good that I'd walked the dog on my own without petering out and she kind of burst my bubble. Why can't people just be more sensitive? I think that's what I hate. Sometimes I want to wear a shirt that says "Not firing on all pistons! Be nice!"

Headache is indeed a banger. Still going on today. I have two more weeks off of everything, including my business (I made alternative arrangements). I am to sleep at least 8 hours and nap once a day and not take anything else on. I do have Vicodin for the pain but I don't like to take it. After two weeks I go back part time and then see my doctor. I am hoping that takes care of the headaches and fatigue. My goal for the time off is to do it his way; only walking, not filling my days, naps, rest.

I've tried to convince my husband I should be a stay at home dog mom, but he doesn't seem to understand how much the dogs NEED me.

I'm a teacher. We have to master the snake eye or they won't let us graduate. There's that and the "teacher voice" which literally chills blood in the veins and makes the heart skip not one, but two beats. Isn't it funny how "You look so good" isn't really a compliment right now? I know it isn't intended that way, but it feels like it's dismissive. "If I can decide with my eyes that you're okay, then I don't have to deal with you or try to have empathy any more." Obviously not everyone feels that way. I am blessed to teach at a tech school where there are nursing and medical assisting teachers (who are nurses and MAs themselves) so they get what I'm going through and have never been dismissive. The fashion merchandising teacher was funny, though. Somehow in her mind because I was dressed cute and had a cute pink walker and was walking "faster" than she expected, i was fine! Ah well. Love them for who they are not who they aren't. Had a short little nap and am back in the world of the living for awhile.

Awesome to get an answer! That's often all we want, isn't it? Even if it isn't fixed right now, just knowing there is something that can be done makes us feel more in control. I'm not amazing, trust me. I've done nothing today but work half a day and go to the doctor, and I'm sitting here in my chair so tired I can't hold my head up. Someone is coming to get the key to the barn in a few minutes and when they go, I'm taking a nap. Got answers from my doctor today too...basically he said what I felt; I went back to work too early, I've done too much too soon, and I need time off and more rest. I needed to hear it, though. I also needed him to have my husband hear it (and needed my husband to agree), and needed his note so my boss could hear it. It may not be the final answer, but it's an answer and I'm happy to have confirmation that it is still early in my recovery, and I'm not crazy. (Or at least I'm not any crazier than I started out.)

I'm usually the one getting songs stuck in OTHER people's heads! LOL Sometimes, just to be evil, I play "It's a Small World" over and over again in my classroom. On Friday's I play Rebecca Black's Friday song. Yes, I am the evil teacher.... I sleep with headphones in listening to a book on my iPhone. Usually it's Harry Potter. I already know the stories so I don't get caught up in them, and they don't keep me awake. But if I do wake up, I can listen to Jim Dale's voice for a little while (it keeps me from thinking about other stuff) and he reads me back to sleep. I did this in the hospital and it helped me sleep through the beeping in my room. Every time I'd doze off the heart rate alarm would go off because my resting HR is 40 (or was 40 11 weeks ago). That helps with any kind of repetitious song, thought, or anxiety.

Thank you so much for that list Macca. I used it last night to organize my feelings and frustrations and it ended up being four pages. LOL. I finished it up with what I need moving forward, and what I think is helping. I'm seeing a new neurologist today. Going on day nine now of a headache, spidey head. Not going to complain, just going to hope for resolution.

I hope I get to that place, but I'm not there yet mainly because I don't have kids and right now my ability to be there for others is so limited. My job as a teacher makes a difference, but right now it's a struggle to get through some of my days. My job as a personal trainer and weight loss coach makes a difference in people's lives, and I miss that impact (although I'm still doing it). I need you guys to be up because today I'm down. I am on day eight of an intractable headache. I am so fatigued. I sat through an in-service that was REALLY good today and got all these great ideas, but feel at a loss to implement them. I feel like I've had no improvement in the last three weeks, or at least no discernible improvement and I feel responsible for it. I'm ****** that at the end of sitting all day I feel tired and just want a nap. I see a neurologist tomorrow (I was seeing my neurosurgeon). I hope he has some answers, but I fear he won't. I just really do want my old life back. So far the new life is not very much fun. (And part of it is I AM SICK OF BEING A WHINER!!)

I hear you Lisa! I'm sorry, but I'm really ****** that all I learned about my recovery has come from experience, websites, and you lovely people. I was sent home with a "rest for a few weeks and do you want to return to work next week?" (Literally three weeks after the event, my doctor wanted me to return to work. When the day after I got out I called her sobbing because I wasn't ready, she gave me two more weeks. Seriously? We don't monitor the patient to see how she's doing? Granted, I thought I wanted to go back to work, but I don't have any experience with brain injury!) I had a headache so bad tonight I called my husband scared because it was so reminiscent of the initial bleed. It's calmed down some, but I feel horrible and IT'S ONLY MONDAY! Wah! Okay enough whining. Because my head feels like it's detached from my body today, I am referring to myself as Nearly Headless Tory. I managed to get through modified bootcamp (my relief instructor was in Seattle and when I texted to find our where she was she said "Oh, I told the girls...sorry" Uh...you said you'd take over my classes on Monday nights for the next nine weeks). I almost canceled but it was pouring down rain and one lady had biked over, another was new, and there were four other hardcore awesome ladies so I felt I should stay. At one point, I wanted to cry my head was pounding so bad and it made me more angry. Why didn't I know this was to be expected? I could have been more proactive about taking proper time off and managing my business to lay off some classes on others instead of this "maybe next week it'll be better..." business. Sorry. Just not having a good night, but am very proud of my ladies tonight who rocked it!

Thank you so much, Laura. I appreciate it. Because I can "make it" through the days I feel like it's wrong to ask for more time off, but when I think about my current quality of life... Still, there is that selfish feeling because I didn't become a teacher to bag off on my kids, you know?

Thanks Skippy and Mary. So appreciated! I feel like I'm whining all the time, but I also feel like here is a safe place to whine. No one in my real life (except my husband and a few friends) wants to hear I'm not 100%. Not even my doctor wanted to hear that (or at least that's what it felt like). What I wish I could do is work Tues-Thurs and rest on Mondays and Fridays...not for an extended weekend. Heck, my current weekends aren't very fun to be honest. But just for a concrete amount of time I could be off, with a concrete amount of time I can lecture, teach, test, etc. and prepare the students for the material. I don't know if that's an option, although I have been gone once a week regardless. Today is Monday and generally it's my really good day! For some reason today it's only "meh" but oh well. Not bad enough to stay home but not good enough to get as much done as I normally do. Just tired already. I have a conference/workshop to go to tomorrow...bets on how long before I fall asleep?

Thanks. I appreciate your input. If nothing else, I am living for Summer break. I work during that time as a trainer, but that's like two hours a day three days a week. I talked to my husband about bringing up more time off if I don't. I am writing down all I need to talk to him about. A note will get me off work. We can't take more than three days in a row without a doctor's note. it may still be no pay if I don't get leave donation. I guess that's a bridge we will cross later.