Teechur

So much good information in these threads, and lots I've experienced too. It especially hit me that headaches coming from "over thinking." Never in my life did I think that in reality, thinking would hurt but it DOES! Recovering from a brain injury is not a straight road. It seems there are lots of fits and starts, and two steps forward, two steps back, three steps forward, two steps back. Overall, healing is happening, but it doesn't happen the way an orthopedic injury (in an otherwise healthy person) happens. One blessing from this is that, as a teacher, it has given me a glimpse into what it is like to deal with high distractibility like my kids with ADD and ADHD. (I'm like the dog in Up, I swear.) I also understand what it's like to deal with cognitive disability; not being able to remember things, not being able to recall as fast, trying to understand something and it just doesn't work. As a doctor, you have the blessing of knowing what it's like to be a patient and what they worry about and how hard it is, sometimes, to trust that things are okay and your body is doing what it's supposed to be doing. Has your weather changed at all? I'm dealing with worse headaches since the weather changed here. If it stays the same for three days, I feel fine the third day with light headache, or just here and there headaches. Maybe start journaling every hour and see if there are correlations to weather, food, etc. I wish we all could wave a magic wand and be back to where we want to be! You're going to be an amazing doctor again with a whole new perspective.

I've noticed bags under my eyes. In general, I feel like I look 20 years older than a year ago. I feel like on bad days I have it written all over my face. I tend to be happy go lucky, smiling all the time, happy with life. It does frustrate me that I look older and crankier! Oh well...I guess the alternative is looking dead and peaceful.

I wasn't able to finish the marathon, unfortunately. I did finish the half, so now that just means I have to go back and run that one again to redeem myself! I really really can't wait to have ALL of this behind me!

Haha Mary! I was thinking of you yesterday. I went out for a run in the morning and the weather changed, bringing with it a LOVELY headache! As I was finishing up my run and on my own block, I found myself closing my eyes and still running. Fortunately there's a path and a bike lane and I did NOT run into traffic! I know I'm blessed to still be able to run on many days, so I'd better not push it by running with my eyes closed!

I agree. I read this and it helped me immensely. I also read "Left Neglected" which has nothing to do with SAH, but had everything to do with a super busy, active woman suddenly being left with a different life experience. It was, of course, WAY worse than my situation but it helped me get some perspective. (Unlike others, I resent that my life is not what it used to be because I loved my 25 hour a day life!) I also read "Where is my Mango Princess" which was interesting, funny, and probably a good one to read to get the POV of a carer. I started "Rebooting My Brain" but at that point felt I was over-focusing on being "sick" so took a vacation from all of it hoping to move on.

Thanks for the input, everyone. I saw my regular GP on Friday. He could see no reason why I couldn't have pain pills, so he wrote me a prescription for pain medication. He's referring me to a headache doctor, since I feel like I'm getting nowhere with the doctor I'm currently seeing. I mentioned that he'd increased my dosage of Amitryptiline, but didn't update the prescription so I ended up out without the ability to get a refill because it hadn't been 28 days since my last refill. I went down to 50 mg for one day and felt awful, and was more than a little irritated that I couldn't get the refill. Thank goodness I checked a few days early. That wasn't a fun day. It wasn't the headaches, it was the withdrawal. Hoping the new doctor will find something that works! My husband has arthritis in one knee and his knee is a barometer as well. I really feel for people with fibro, RA, and other things where it just causes the whole body to ache. It's only my head, but that's bad enough! It's really singing opera tonight, even typing this note and looking at the screen is hurting. (Wouldn't you know, I'm a computer teacher. Good thing I can touch type!) Oh and Kris, I agree! Maybe I should live on a cruise ship! That was so amazing. I've never been on a cruise, and it was SO amazing to be running the deck of the ship and see whales in the distance! WHALES! One does not generally see whales on your everyday run!

I haven't posted a lot lately but have lurked. Quick recap: Had a perimesemphalic SAH in January. Spent three weeks in the hospital. Told to go home and take it easy for a few weeks, and sent on my way. Anyhow, long story short, over the summer I was changed from Topamax for headaches to amitryptiline (which is also known as Elavil). In July my husband and I went on a cruise, my dose was set at 75 mg, and it seemed to do the trick. My headaches went from one long headache that had lasted since the day of my SAH to periods of no headache, and lots of light days with maybe one or two bad days a week. Not ideal, but liveable. This continued for the entire month of August and to the end of September. I went back to work, as a teacher is wont to do. I also returned to my personal training, coaching runners and my own training during August and Sept. Suddenly end of September the headaches returned full force. I moved my doctor's appointment up and told him. He hmmmmed and hawed and said what always makes me want to give him a good swift kick in some painful place, "You know I still think these will just go away!" That is very helpful.... He said go home and if they still were bad in two weeks, call him again and he'd increase my dosage. Increased dosage to 100 mg, no change at all. Headaches that are bad more days a week than not. No days of no headache but sometimes days with period releases. I have already missed work a few days. The difference? The weather! I live in the PNW and we had an unprecedented warm summer that started, you guessed it, mid-July! When I got home from our cruise, where the weather was very stable, we had the longest stretch of days with no rain in 90 years. Now that we're into Fall weather, EVERY ****** TIME THE WEATHER CHANGES, I get a headache. Our weather is much like London...rain, fog, with sun breaks. I was having a light headache day on Tuesday, so I went out for a five mile run. While I was out the clear sky started clouding up, a storm started brewing and I could lliterally feel the change in my head. Looking at the barometric patterns later, I could see why the last mile of my run was very hard. Do others find this to be correlative? I have started tracking barometric pressure and 29 is my bad spot. Guess where it is right now? Sudden raises in pressure or drops and I note it. I'm a walking human barometer! If you also suffer from headaches that are weather related, what can you do for relief, if anything? I think the Elavil isn't helping do anything but make me gain weight. (I am a Weight Loss Coach along with PT and I track every bit of food that goes into my mouth, and eating at a losing level I have gained 11 pounds since I started this. It is very discouraging.) My doctor won't give me pain meds so I'm out of luck with that (although I am asking my regular doc for a referral to a pain clinic because I'm done with Dr. "I still think it will just go away"). Discouraged in rainy Washington where the weather is trying to kill me!

Mary I'm sitting in my office in my classsroom right now with the lights off, hat and sunglasses on. It's not just you. I carry them with me all the time. Yesterday I forgot them, but one of my students left his in my room so I put them on. He said "Hey? Aren't those mine?" I said "Yes, but I have a headache so I'm stealing them for today if that's okay." He was cool with it. They know what happened and are very respectful. One of my favorite things has always been to turn my face to the sun, close my eyes, and just soak in the rays. Unfortunately I can't do that often any more. I also walk with my eyes closed! LOL! I thought I was the only one who did that. I also go into the bathroom on my lunch break and turn out the llights because it has no window and gets pitch black. If I can have a few minutes on a bad day, it really helps.

Mine did have an accompanying bang-o of a headache, but I didn't go into the doctor right away. I went to a movie (I was at the theater and we'd already paid for tickets, so even though I felt like someone had literally shot me in the head, I closed my eyes and sat through the movie.) I went in later in the evening when a friend from across the country threatened to come over and beat me senseless if I didn't go to the ER. No known cause for mine either. I had two angiograms in the hospital and no aneurism. Had doppler daily for about two weeks, and then was released after all fear of vasospasms was passed. When I got out I was in a lot of denial and planned to go right back to working full time as a teacher, and part time as a running coach and personal trainer. Apparently the brain damage I suffered took all my common sense. I had serious memory issues where had I not had an iPhone 4s and Siri, I would have burned the house down multiple times because for some reason during my sick leave at home, I felt the need to make 2-3 loaves of bread every day. There are two of us in the house and we don't eat much bread. I had a lot of tingly feelings on my head as if water or spiders were crawling or trickling over my brain. Very odd sensations in my arms and legs to the point that my clothes sometimes hurt. I had to tell people not to hug me because it was such a disconcerting feeling. My skin was hypersensitive. I had a massage (as an endurance runner, I have a standing appointment monthly) and it felt horrible, like someone was...hard to explain, but rubbing me with sandpaper. It wasn't really that sensation but it was a very rough and uncomfortable feeling. I still get serious headaches, mine was Jan 28 or 29...can't remember right now. Odd. I still lose words, but not nearly as often. The odd sensations are mostly limited to my head now, and generally only during bad headaches. For example right now it feels like my brain on my right side "itches" and I can't scratch it. Or it'll feel like I'm wearing a hat, when I'm not. I feel very very blessed to be alive and to have returned to mostly normal life. If I could just get someone to figure out the headaches, I would be ever so thankful! I'm not sure if that helps, but I did also find that tingling feelings were worse when I was over-tired. I think there is no one straight path that says "When you are recovering from an SAH or any TBI, this is what happens" and that's probably, for most people, the most frustrating thiing of all. Brain injuries are not like orthopedic injuries. I break a leg and I get it set, I'm in a cast, it will ache and hurt, but every day heal a little more, and after x weeks, cast is off, I do a little PT to regain strength and bam, back to normal life. Here is what others on here used to say to me, "You are still very early in your recovery, so take it easy and let your body heal." It is very hard for me to take it easy (although I'm better now), but truly that's what is needed. Rest, low stimulation, and permission from yourself and others to call your own shots. (Oh and if you can make others not give you constant unsolicited advice, that would be a bonus, but good look there!)

Totally normal. The frustrating thing is, the doctors make it sound like you're "fine" and can just pick up life where you left off. I will be perfectly honest. I thought that is exactly what would happen. Like maybe I'd have to take it easy for another week or two until the medications I was loaded with in the hospital were out of my system. All of the feelings I had in the hospital, I thought, were from the meds. I have a very very active life; runner, teacher, personal trainer. I tried to go back because the doctor said I was fine, that my headaches would go away within 6 weeks. I went back to teaching after 4 weeks (3 in hospital). I went back to training too soon and had a MAJOR setback. I then saw another neurologist because my head was not getting any better, I was stumbling, had to walk with a walker or cane. He said "What don't you get that your BRAIN BLED?!" He made me take two weeks off then go back half time. Even that was too much. I managed to make it through the rest of the school year, but didn't work an entire full week. I took summer completely off, sending my poor business into the toilet. But, I built it before I can build it again and fortunately I do not have a payroll, loans, or a location to pay for. I work out of my home and coach running classes, teach bootcamp in the park. I'm back at work now after a lot of fits and starts. I'm rebuilding my business. I still get nasty headaches, but not every day. I am running, although I ran a marathon today and had to "call it" at a half marathon. In other words, it will take awhile for your life to get completely back to normal, but it will most likely. You may have some lingering stuff for awhile, but you'll be mostly normal most likely within a year. I'm 9 months out. I have no more neurological symptoms. I do get bad headaches and have tinnitis that gets worse when my headaches are worse. Concentration, problem solving, and even math are all back except when my head is really bad. I'm on 75 mg Amitryptiline nightly and it seems to have lost its effectiveness. I'll see my doctor this week. Do NOT be afraid to call and ask for an earlier appointment if you want one! I wasn't supposed to see him until next month, but in the last two weeks my headaches have ramped up and I think my meds aren't working as well any more. I won't lie. This has been one of the most frustrating experiences of my life, but surrounding me with positive people, asking for help when I needed it, and learning to take things a little slower has definitely helped.

Diduck--I would highly suggest sunglasses and ear plugs. Even just a set of ear buds without music going into them. When I went back to work teaching I wore sunglasses all the time. Still do, sometimes. If I didn't have them on, everyone knew I was feeling better. If they were or are on, they knew I was having a hard day. Instead of saying "I'm tired" I say "I'm struggling today" and with my students, "Zombies are eating my brain." I even refer to my headaches as "Spidey" (because it used to feel like spiders were crawling over my brain. Using terms that others don't associate with "Me too" really helps because they can't say "I have Spidey too." It also cuts down on "Have you tried Excedrin?" I joke now "Look, I've tried everything short of meth...trust me." Last school year I actually would put a slide in my daily PowerPoint of agenda and announcements, a barometer of how I was feeling so the kids knew. I feel very strongly you have to advocate for yourself and if you can find humorous, but specific ways to do so it's better. Of course there are some who won't get it. I have a local client who is just "different" and felt it was her personal responsibility to find a "cure" for me. EVERY day she'd send me information, post things to my wall on FB, etc. I finally after saying no less than six times "I have a medical team and I trust them. I know you mean well, but please stop." I had to block her on FB. After a few days of her FREAKING out over it, emailing my husband, texting him "What did I do?" and a long whiney email about how she just wishes something like this would happen to her :crazy::crazy: I responded with "I'm sorry, but you aren't getting it. Please just stop."

I truly do want my life back. I want my business to be heading back in an upward trend. I want to be able to make plans and not cancel them because of a bad headache. I want to not think twice about going out for a run whether it's 3 miles or 33 miles. I want to spend my weekends running with my friends and helping people reach their goals. I want it all! LOL

Bless you! I hear you big time (but not too loud, please) with the headaches. I'm 9 months or so post and I am still dealing with just nasty headaches. Have one right now. Seems I always head over here whenever I'm dealing with something. Congratulations on your son, but he didn't have to make QUITE that exciting of an entrance! My kids are either of the fur kind (that's Dot in my picture, and I also have three other dogs and two cats) or the someone else's kind. I'm a high school IT teacher aka "Nerd Herder."

I was standing in a movie theater holding a diet coke when I suddenly got the worst headache of my life. I have a HUGE pain tolerance, so I ignored it, went and saw the movie...even though the light and sound made me want to throw up and I was in so much pain I could hardly breathe. I didn't want to inconvenience my husband. Took me a number of more hours before a friend finally threatened to beat me with a stick if I didn't go to the ER. I just assumed I was getting my first migraine or something. Silly me!

Carl--totally the same thing happened to me. I thought I was fine because the doctor said I was fine. I dont think she understands what that word means. I am very blessed to have made two wonderful relatively local friends through this. One lady I met online when I saw she had posted in a FB group I belong to "Just ran my first marathon since my SAH almost a year ago." I immediately friended her and felt like a Grade A Dork, but finally said "Hey, same here...help a sister out." She is much like me, a runner, close in age, no risk factors, sudden onset (she was hiking in Mexico and was in the middle of a river when it happened...on her honeymoon--oiks)! She has been such a valuable resource for me. She fully understands my need to get out there and get going again. At first it was sort of depressing because she was still (and is still) dealing with horrible headaches and I really expected mine to just "go away" like the doctor keeps saying they will. But I learn from her on what to expect, how to handle things, and I love what her doctor tells her. He seems much more in tune with her and her needs. Yes, there are active people out there, but most active people don't run four marathons in a weekend over Thanksgiving just to say they can do it. Doctors don't really know how to handle that kind of active. (When my doctor released me for running he said I could go back to half of what I'd been doing before the SAH. Two weekends before I ran two marathons back to back, for a total of 52.4 miles in two days. I don't think he meant to REALLY go back to half, but he was just telling me what he normally tells active patients.) The other is the sister of a friend of mine. My friend, Michele, lost her sister Nanette to a SAH a few years back. They had planned to run the Portland Marathon together, but she died right before it happened. The next year I ran with Michelle in honor of Nanette. I learned her other sister, Bethany, had also had an SAH. She is also like me, but not quite as active. Hers was much worse than mine, but she never lets me get away with "I know yours was worse, and I feel like I shouldn't complain." She has been a true advocate. She lives about 5 hours away, but I do see Sarah at races quite often. I've also found a few others who have had TBI with excellent information. In return, one great running friend of mine had a very serious TBI when she was thrown from a horse into a tree and fractured her skull. I was able to help her quite a bit because I was "ahead" of her in recovery and was able to explain things like "Why when I drive 4 miles to the store and get 1 bag of groceries, do I feel so completely wiped out and need to sleep the rest of the day." When someone pointed out to me on here (or maybe to someone else) the kind of focus it takes to drive a car and be in a place with multiple sensory activities going on, it helped me so much to understand that not driving was the safest thing. In addition, another friend had a stroke and I was able to help her daughter through it. One of my runners, also had a stroke (embolic). It was minor and she's doing great, but again it was great to be able to say to her "Slow down, relax, let your brain heal." I hope you can find someone because you need that "Okay, am I crazy" sounding board. Then in return as you are further along in your recovery you can help someone new. You already do help a LOT of people. You certainly helped me when I showed up after my brain-explosion! I've spent a lot of time on why. I feel like there must be a reason or a purpose behind this, and maybe it is just that I can be there for someone else to help them through it. Or maybe the reason hasn't been revealed to me yet. I guess I need it not to just be some random event that had no purpose.

One of the reasons I liked to have a cane around is that while I was still in that "no one come near me because you might knock me over" stage it was a signal that something was wrong and I needed space. It is hard to come out and tell people but I think you did the right thing. You advocated for yourself and got what you needed. She may have been ticked, but so what? She'll live! I'm back teaching and it's hard with my new kids because they know what happened, but don't really understand. They didn't experience me any differently than I am now. Today I had a horrible headache and was feeling pretty blech. I explained that I had a headache and I'd try not to be cranky, but they could help by keeping the noise down. My returning students were great. They understand. The new kids don't. Can't blame them, they're kids, but it is hard to get them to understand it's not "just a headache" it's "A MOTHER FREAKING BULLY OF A HEADACHE". Just keep educatin' 'em, I guess.

Kind of a funky club to belong to, but welcome! I had mine in January and am now almost nine months out. No known cause for mine as I have/had no risk factors outside of that pesky XX chromosome! I am on medication for headaches. I wouldn't be able to function without them, and even with them I still get at least one excruciating headache per week. As with others...very little information in the hospital, found most of it myself, great resources here. Prior to my SAH I was a marathon runner, personal trainer, teacher and mostly healthy eater. I'm still all those things, although I've yet to run a marathon (I have one this weekend, though...we shall see)! I'm back to most of my previous levels of activity and just have to listen to my head and slow down every now and again. Most other symptoms are gone except ringing in the ear, which mainly is there the worse my head is. Very blessed to have had this happen and made it through it pretty well off. Others are not so blessed. If I forget to be blessed, the headaches remind me by smacking me upside the back of my head and shouting "Be blessed, darn it!"

I agree Sandy. Your post stuck with me and as soon as I was off school my goal became walk every day regardless of how I felt. It made a huge difference in how I felt both physically and emotionally. Now I'm even running again a few times a week. Still rocking nasty headaches, but my balance is better, almost everything else that was attributed to the SAH is gone. Now if we could just adios this six and a half month long headache.

I love how everyone is sharing. I didn't entertain the thought I might die for a moment. I was really in a lot of denial and literally thought I would leave the hospital and just continue where I left off. I think that's why it has been so shocking to me. However, while there are still blue times I am feeling very positive lately. I know a lot of what I missed was the ability to say, "I think I will go... (for a run, ride my bike, to the store, visit a friend, etc.)" and not give it a second thought. Now, as a teacher, on break with my husband I can do that again, just not with the same intensity. I'm feeling more 'me'.

That's near where mine was on the right.

Yes, it is very frustrating. I am a LOT better. I'd say 90% better but that doesn't mean all better and I think people don't understand that. I so appreciate people who take the TIME to really look. Yesterday a friend invited me to stay for a BBQ and I said I was sorry, but my head was really going off. She said "Yeah, I can see it in your face. Your eyes give it away." I really wanted to stay, but I knew it would be so hard that I wouldn't have been fun company. I appreciate that she takes the time to "get it". My husband is awesome, he gets it and will say "No, you go lie down I have this." or "Are you sure you're up to this. You look like you're not feeling great." It's such a relief not to have to say "But really, I'm not feeling well" (hahaha...my little dog is running back and forth down the hall and it's making me laugh") Well off to PT! It's going to be a lovely day here in the Pacific Northwest!

I am actually NOT "peed" off all of the time, and I did unfriend that person who told me it could have been so much worse. I don't owe anyone anything other than to live my life the way I choose to. I don't think making others feel guilty because we didn't die helps anyone, no matter how well meaning it is. I never fail to feel pain for those who have lost a loved one, and I am here to help others who will come after me in this journey, as some have helped me. I think that's part of our purpose. One of the things I do as a Weight Loss Coach is to help people understand that everything they are feeling is okay. I don't judge or tell them to stop feeling this or that, or just get on with it. What I do is encourage them to make positive changes in their life that are sustainable, feel good about those changes, and move forward without looking backwards. That's what I'm doing. But if they have a bad day and want to say "I'm having a bad day and I'm not happy about it" I'm not going to say "Well so and so is having a worse day, so how dare you choose to feel bad today" because that doesn't help anyone! I'm actually a very "up" person and I love life. I've got a fantastic husband who is the world to me, I'm blessed with four dogs, an amazing job as a teacher, supportive friends and family. This "thing" happened and it doesn't define me, but at times it sure gets me down. That's okay. I'm allowed to get down about it. Today my head hurts really bad and it's impacting how I enjoy our holiday here in the good old US of A, but that doesn't mean I'm not having a good day. I ran a 5k this morning with my two Tinies (I call it a Tiny Dog Jog...I run with them in a jogging stroller for balance). I got to see friends and some of my runners, it's a gorgeous day. I've prayed more than one prayer of thanksgiving. My pain doesn't define me, but I'd be lying if I said it wasn't frustrating to have to run with a stroller because my balance isn't all the way back, to run 3 min/mile slower because I've lost a lot of endurance, and to be feeling level 8 on the pain scale which means I've had to turn down an invite to a friend's BBQ. If we're going to support each other I don't think we need to wallow with each other, but I do think we need to allow each other the latitude to have our own feelings, whether they are positive or negative. Don't tell me I owe it to someone else to feel "up" because I'm better off. That just trivializes my feelings and it's unfair. I'd never do that to another person. To me that's no different than saying "Quit complaining about your pain, that person over there has more pain!" Emotional or physical, we all carry very real pain and we all should have the freedom to express it on a support forum without being made to feel like we're wrong to do so.

I understand your fear. I know we were all told there is next to no chance it should happen again, but then my question is "well why did it happen in the first place, and if it did, then why can't it happen again?" I do ask that only in a truly questioning sense. I don't worry about it too much, but there have been times when my headache has soared when it has crossed my mind.

I've felt that way, Carl. I think I've had guilt because mine "wasn't that bad" but, to me, it's been catastrophic (at times). I am feeling positive in lots of ways, don't get me wrong. I do appreciate that I'm not dead (although I could be running some wicked marathons in heaven and wouldn't be sitting here with a blistering headache). I think for the most part my anger is fading, but I don't think the depression is completely gone. I know I had two really great days (Sunday/Monday) and today started good but didn't end well...I still feel pretty good, emotionally but I'm really bummed. I'm just really tired of being in pain, even though it's only been six months but six months of daily pain isn't the fun one would think it might be!

I think that there are a lot of reasons you might feel that way. You have an identity right now and have met a new group of friends here, and getting "better" changes that identity. There's also a fear that getting better might mean people will expect you to "be" better. That's one thing I've found, "You look so good" means "You're all better" when in fact, it doesn't. I know that i see changes myself at times and part of my rejoices, and part of me almost worries...sometimes I don't get that, and part of me is starting to realize it's because a lot of times I'll feel great for a few days and then bam, it's back into searing headache land (I am mainly dealing with the bad headaches, so I'm way better off than a lot of people). I don't think you have to worry about why you feel the way you do. I think it's okay to just feel however you feel. There may be a reason for it, or there may not be. It might still be some of the messed up brain chemistry/damage that is causing you to have inappropriate reactions. If that's the case, it is what it is. Don't apologize, just experience it and let it be.