Teechur

My goodness Louise! I'm surprised you haven't grown horns and have steam blowing out your ears from the frustration of waiting so long! Congratulations, though! What a relief. It is this that scares me when I consider going on part time disability, even though I have paid for disability insurance. I wonder if the stress will be worse than the stress of working and running out of sick pay. I do every year. I still love my job, though, and don't want to lose it but would like to go to half time. So happy for you and bless you for hanging in there!

How horribly sad. I can't even begin to imagine the pain of losing a child, particularly when it was so preventable. I was SO blessed that I went in and said "I feel dumb, but I have a really bad headache and I don't get headaches. This is the worst one of my life." Within ten minutes I was triaged, and five minutes later one of my former students was leaning over me saying "Mrs. K!? So nice to see you! Only wish it were under better circumstances!" Within half an hour I had a diagnosis of a small hemorrhage. Just a simple, relatively (as medical tests go) inexpensive and quick CT scan would have showed the blood on her brain immediately. Scan machine broken? Give me a break. Send her to another hospital, or use another machine. It sounds like she had a lot of trauma. If they could see mine with a simple scan, even an x-ray would have picked up hers. Oh the student was the radiologist and was one of my best students. Love that girl!

You're right behind me Tony! So glad you're finding your way. This is such a strange journey to navigate and most of us aren't given a broken compass, much less a map or guide! Sometimes I wish my doctor would tell me to stop working because I am EXHAUSTED! But I keep keeping on and I love my job...

I can "hear" the relief in your writing. I just hate that this happened to all of us. Every step is a victory so take "only" out of your vocabulary. It's hard for us busy ladies to hear this but do remember that this can be two steps forward, one step back but it IS forward. Some days you'll feel like a million bucks and others like gum stuck to the bottom of a shoe. That's all normal. Everything is normal yet nothing is normal. It just is what it is for now and soon it will go back to what it was, hopefully. Or it won't and if it doesn't you are strong, obviously, and you will find a way to make your new life just as awesome as your old one. (I'm still working on that, but I'm stubborn.)

Yay Clare! I'm a runner too. I have found my times have slowed dramatically and I can't seem to figure out why. Headaches get in the way of my runs, but not so much that I can't run marathons. I am up to 109 marathons or ultra marathons. My headache doctor (she is a neurologist with a specialty in Headaches) prescribed running as part of my treatment plan because of the way it helps to release serotonin and dopamine for natural pain relief. It also exposes us to Vitamin D, which we need for healing and more help with serotonin creation. (Well exposes us to the sun which allows the body to make Vit D.) When I run I feel like the real me. I actually ran with my walker. (I always worried that someone was driving by and thought, "That lady stole a walker from some handicapped person!" Haha!) I love nothing more than getting out in the woods with my dogs or with them and my friends. I actually feel like I think clearer when I'm running.

John and Clare You are very right that you cannot compare brain healing to any other type of healing. It's like a roller coaster, only with no rhyme or reason most of the time. Some days you can feel like you're finally getting back to normal, only to have three days of needing to be in bed or even UNDER the bed. Nothing is normal, but everything is not abnormal, if you know what I mean. You will sometimes feel like your skin is crawling with spiders, or not. At times it might feel like someone is pouring water over your brain, or not. You may find yourself fatigued from a simple phone call to a stranger where a visit with a friend that is three times as long is fine. A "quick run to the grocery store" in your old mind is nothing. To your new brain (or new for now) it is a bombardment of colors, sounds, feelings, tastes, smells, and people that simply won't compute. It's also multiple decisions that must be made that may take much more time than it used to. This will pass, but for now don't fight it, give into it and let it wash over you because adding frustration to the frustration only makes it worse. For me, I can run a marathon and feel great but have a conversation with someone on a stormy day and be slurring my words and have to hang onto walls. On a stormy day on Saturday where we literally had every type of weather except snow, I ran with a headache for 11 miles Saturday (I'm a running coach), but as soon as we finished I went home to bed. It was horrible. As for doctor's plans, listen and take notes. Write down questions (or have someone do it for you) and take them with you. Remember, though...YOU ARE THE ONE WHO HAD THE SAH. With very very rare exception, your doctor has not. One time my husband said to me, "But the doctor said your headaches would be gone by now" and I finally had enough of hearing that and said "Roy, the doctor has not had an SAH. She has only treated them and let patients be discharged. I have had one and am living with it. It doesn't matter what she's said or not." They can tell what to expect, in general, but since the brain has a (har) mind of its own, it will do what it will do. For most of us, life gets almost back to normal. I have a few deficits after three years of a minor bleed. I have a rough time with math, when it used to come easy. On a very clear head day I can do math in my head, but not most of the time. No big deal. I'm better off than most. I also still have a headache. That's worse, but it is what it is.

Praise the Lord! Definitely give it to God. I'm not good at that. I do give it to Him, but often I wrestle it back from Him. He understands. He made me stubborn that way. However I find when I finally do just give it up in exhaustion, it is such a relief. So thankful you can rest easy now.

You know Louise, I like the person I am too! I never thought about it that way. I may miss the life, but I do like the person. I'm way more chill and laid back. I don't sweat the small stuff because it's all just small stuff. I like that about me now. I do wish I didn't have to lay down in bed for two days a week sometimes (this week has not been good, but today is) but I like me. I'm going to hang onto that! I do not know what we're doing. It's a surprise! Oh, I am doing a race, not running it although I am running part of it. Every year for my birthday I organize a race. It started with 11 people and is now over 200 people. We raise money for someone in the community to change their life in some way. This year we're getting a racing wheelchair for one of my former students who is paralyzed from the waist down. I'm very excited for that!

The business has actually dropped because I have let parts of it go for now because I can't keep up with it. I know I will be able to at some point, or I won't. I'm okay with that. The part I let drop off is the part that was most emotionally draining; working one on one with weight loss clients. I love love LOVE them, but it did mean taking on other people's emotional problems and I find that kind of thing the most draining. The fitness aspect is actually the least draining. I can let my mind just go and exercise (although I've learned not to look over something and believe I will remember it when I get to class...good thing I can laugh at myself). One thing that is a total blessing is that my ability to stress is just gone. Is it all the meds I'm on? Did that part of my brain die? I don't know. It's probably a good thing I don't take care of the bills, though. Ha! I am actually at a teaching hospital and have never stopped seeking out new junctions (that word doesn't feel right) for treatment. I'm currently being seen by some doctors at the University of Washington. I have some ideas to cast my net further afield once summer hits, so I'll start coordinating that soon. I guess if I ever do go on disability I won't lack for paperwork! Win I love you to pieces and will even put you back together again, on a good head day. On a bad head day you're on your own. I always tell my husband I plan to torture him until I'm 99 and then I'll stop and reevaluate my future so he's STUCK with me! Haha! I actually do have a sunny outlook, which is part of the reason why the depression is freaking me out! I've always been called Pollyanna (sometimes not in a nice way). You know, one of those people who is a morning person and whistles a happy tune at 5 a.m.? Yeah, that's me. Well, maybe 5:30... Not sure about pain management. My neuro tells me that it will only cause more pain in the long run. On the one hand, everything I research says the same thing. On the other hand, sometimes it would be nice to take a pill and just feel good for a little while. The running is like a pill. I have a plan for the summer; run every morning for at least 10-20 miles to see if I can disrupt the pain signals and maybe "retrain" my pain neurons. At this point, it couldn't hurt, right? Low pressure front coming in tomorrow, and I have a 12 hour race which is a training run for me for my 50 miler. I refuse to let it stop me... Daff I love what you have to say. I haven't, obviously, let what I have going on stop me from doing much of what I do. I still have to work every day and be there for my husband and my students. I just feel like if I could just get over this mental hump, maybe not spend so much time being mad at myself...I don't know. Maybe I am mad at myself for not accepting and moving forward. It just feels like there is this obstacle and I can't get over it or around it so maybe I need to wish it into the cornfield and run past it.

I have started to see a therapist, who deals with chronic pain, for my headaches. This Winter has been extremely hard because of the weather. I've kept close track of my triggers and pressure drops seem to make it way worse, and pressure rises make it kind of worse. Well we get three days of rain, then about day three I'm getting used to the drop and we get three days of cold and clear. Just when I'm starting to feel like life is awesome again, the pressure drops and I want to jump off a bridge. When I started having "Maybe it would have been better if I hadn't made it..." thoughts I knew it was time to talk to someone. First I tried my husband, and while he's a great and supportive man, this topic really freaked him out. As a friend said "Don't go to the bakery to buy a hammer." I realized I needed someone who was more qualified to deal with my depression. What I "want" and what is reality are two different things. I want my old life back where I got up at 4:45, went to the gym, then off to work, came home ran 5 miles, then taught bootcamp. My days were full of activity and I was full of energy. I had no desire to slow down or change my life at all. I had a business that was growing every year, and the best teaching job in the world! What I have is headaches every day. I rarely work out every day of the week, but I am still very blessed that I'm back to running marathons. While my business has fallen to an embarrassing level, I still run it and I love the people in it, and cherish the friends I make through it. I am starting back at the gym with weight lifting and am averaging one day a week. Hopefully I can go today. So it isn't what I want, but it isn't bad. I want to want what I have and I want to stop being angry at what I lost, and depressed over the pain. The pain wears me down...just wears.me.down. I'm sure some of you can relate. My therapist suggested two activities: 1. Take a specific time to mourn my old life and then let it go. Say to the people in my life, "I am going to be sad/angry for two weeks" (or a weekend, or five days, whatever I decide) and then take that time to cry or rail or whatever I need to finally say "That life is gone" to allow me to move on. 2. Write a letter to my body telling it how angry or disappointed I am in it. I did tell her that I almost felt betrayed because my healthy lifestyle was purposeful. I chose to exercise every day with a goal of keeping lifestyle related illness at bay. For some reason I am finding I can't do these things. I don't know why. I know this is all a process, but I really feel like I should be ready to move on by now. All you all seem like you are so much more accepting. Part of me feels, I think, like if I do that I'm giving up.Then even as I think that, a little voice says "Giving up what? It isn't like if you learn to accept your limitations that these are your limitations forever! These are just your limitations for now! So it's like I have all the right words in my head, but my heart isn't following along like it "should" and then every time I say "should" I hear my therapist say "There is nothing you 'should' do right now. You suffered a loss and you can take as much time as you need to mourn it." AIGH! Being an adult is hard!

Thanks. It is a good opportunity to keep my position and what I love to do. Hopefully next year the Winter will be easier. It's more like Fall this year so maybe it'll be Wintery where usually we'll just have a lot of cold days one after another, as opposed to three days of clear followed by three days of rain. My brain can't get a break that way and get used to the weather pattern. I've made it to work every day this week, but it's been hard and has required me to go home and go to bed immediately twice. I hate that, but oh well. Hopefully we can move in a few years or even better, I'll heal up!

I did the denial thing too, but it was because I'd never had a headache so bad and had never heard that "the worst headache of your life" can be the sign of a stroke. I actually sat through a movie, went home and tried to take a nap, and all the while I was completely in so much pain that every beam of light and every sound made me want to vomit. Looking back it made no sense to NOT be alarmed. If I hadn't posted on Facebook "I have the worst headache of my life, is this what a migraine feels like?" Thank God among the suggestions to take Excedrin and drink coffee were people in the medical field saying "Go to the hospital! Go now!" and one of them started texting me furiously. So I finally did, six hours later. So thankful I did. No telling what the outcome might have been. I find it interesting that studies show that most people have a good outcome. I've always wondered what that means? To me a good outcome is no deficits or impact on their lives. I know my neurosurgeon thinks I had a good outcome but she has no idea that three years later I'm on medication (I never was on a single thing before) for chronic daily headaches. I don't consider that a good outcome. She hasn't bothered to follow up. It seems from here and the people I know personally, that there are a lot of not great outcomes. Not necessarily HORRIBLE outcomes, but not "good" outcomes.

...and Iola, I hear you. There are sometimes when we have stable cold weather (hot works too, but no rain is what I need...high pressure) and I feel good for a few days in a row. I still have a headache but no dizzies and the pain is light, really bearable. When that happens I get hopeful that maybe it's changed and I'm healing. Then it's like the other shoe falls and the pain returns. I am so disappointed on those days. You'd think after three years I would recognize the pattern and not get my hopes up, but I still do. (I mean I do recognize teh pattern, but it doesn't seem to matter.) I'm just really having a hard time coming to acceptance that this is it. I'm entering my 50s (ack) with a perfectly healthy body but this neverending headache that may very well be NEVERENDING! Poo! It's not that I want to give up hope, but I want to, but don't know how to, get to acceptance without it being "Well this sucks but I guess this is my life now, woe is me." I want it to be "Okay, this is my life and I can deal and I'm so blessed in so many different areas that I can handle this with grace and laughter and lots of appreciation for what I do have, not mourning for what I don't." Normally that's who I am (the latter) but for some reason I just canNOT get there yet and I don't know why my brain is being SO stubborn on that front.

Well I just can't seem to pull the trigger. I am now seeing a chronic pain therapist and trying to figure out how to work all this out. She does think I use all of my spoons on other things when I should be saving them for myself, and to an extent I agree. Selfishly I wonder who I will be if I stop teaching. I am not a mother so I don't have that. I am not particularly talented at anything except I am a very good teacher, guide, and motivator and that's about it. Oh I guess I can write as well (just don't base that talent on my writing here because I tend to write more "stream of consciousness on the forum). So if I did leave teaching I am afraid I would feel like I had nothing to offer the world and if I paired that feeling with the depression from the pain I just worry I wouldn't do well. I don't know. It sounds silly when I write it out, but it is in my heart. So the plan is that next year my students who are in the second year program will do a test of being off campus two days a week out on their school sites as IT interns. I will go and check in on them every now and again, but they will otherwise by supervised by the technicians there. If that goes well the next year all students will, after the first maybe half quarter, be on campus three days a week and off on internships learning on the job two days and those two days I am released to check up and them. This was my administration's idea as a way to keep me able to work and have the option to rest if needed, and then supervise and check on them as needed. So I may not need LTD. I'm very excited about it, but it does take some energy to plan so I'm trying to be more cognizant of my spoons.

Sending love to you and prayers for a steady hand and laser focus to your surgery team.

Carolyn You don't have to be a rock at every moment. This is a huge decision and you will make the right one. You'll question it, but ultimately it sounds like you are in great hands! A doctor who cares is so important! The device sounds fascinating. Is there any way to hear about the prognosis of the other recipients? Imagine if this could just waylay all of your worries...wouldn't that be a wonderful thing? I will keep you in my prayers. Macca--doesn't sound boring at all. I love teaching and also love creating curriculum. I never used "canned" because I always feel I know my students better than someone somewhere else.

I did go in. Getting to see the actual doctor is very hard, but I did see the ARNP (not PA, I was mistaken). She took a full hour with me and answered a lot of questions. Long story short, there is still some things we can try and they aren't dumping me. No real explanation about why she said that the first time. I felt better when I left about the situation, at least. Increasing my Duoloxatine and late Gabapentin. Hope it helps. Ponigirl I did have some innacuracies on my records too. I "had cancer" and was a smoker. NO! That's why I didn't get life insurance! I had them fix it. I did have a tumor removed that would have been cancer, most likely, if left in there but it wasn't cancer. I never even had chemo or radiation. I never smoked...okay that ONE time when I was 17 but I threw it out the window after three puffs because it was awful!

I did ask for one more appointment to have them review my medications and see if there is an adjustment that can be made. At that appointment I will see the PA and ask her about things. I agree, Macca. I think that since my situation is uncommon, it would be interesting to see how it all pans out. She may be right. I may need to move and darn, I'd hate it to have to be to Hawaii! When I've been at appointments I have seen her notes on me and they have been very positive. Her descriptions of me as a person have been complimentary. So I don't think that it's personal or that she has found me annoying. I've only emailed her a single time. I haven't sat in her office and whined. In fact last time I was feeling better, as it was the end of summer. Sometimes I feel ready to give up. But then what? It's like give up to where? Iola, that does make sense. Your body keeps on coping until it simply can't any more and then you relax and the headache comes on. Often my worst ones come at night because my body's defenses are gone. Then all I want to do is go to bed and cuddle my dogs. I hate that. I used to stay up until 11. Now I'm look at the clock at 7 and thinking "Is it too early for bed?" LOL! Last night was actually a good night but I try to remember not to waste my spoons on good days. I did teach bootcamp and felt great, but made myself get into bed at 10 for a solid 7 hours of good sleep. Woke up with a headache again today, but it is what it is and at least I wasn't groggy and my cold is almost gone! Yay for that!

Last Wednesday my neurologist called me at work because I'd emailed her back in December about some concerns I've had. She hadn't replied and I just figured my email had gone into her spam folder. I was right, it had. She wanted to make sure i knew she wasn't ignoring me so she called me directly when she found it and talked to me about these symptoms and asked me how I was doing. I explained that it had been a rough Winter, because it has. We've had a very "mild" Winter here with lots of rain and lots of changing weather. We've had windstorms, heavy rain storms, sun at very strange times, very cold days followed by strangely warm days. The barometer has been all over the place so my head has as well. I told her I was doing everything she has asked me to do; that the Cefaly device didn't work. I used it daily for two months for 40 minutes twice a day, but it didn't help and it was $400 so I returned it. Let me say that I have really REALLY liked this Doctor. I've felt very supported and like she really was trying to find a resolution. She told me up front that it would probably take two years, that was a year ago. So while we were talking she said "Often people think they are doing all they can do but they aren't." I assured her that I am because I truly am. I take every supplement. I exercise; both cardio and weight lifting as she has instructed. I have a SAD lamp that I use at work all day, I drink the tea, take the medications, did the acupuncture, get the sleep, read all the books, and even sought out a therapist for chronic pain. But she really acted like she didn't believe me and in the end she said, "I don't know if there is anything else we can do for you..." So is that it? This is from a teaching hospital/clinic. I went there specifically because I hoped that they would try a variety of things and would not give up on me. I am not, believe it or not, a whiner. I am very pro-active about my health which is why I am a runner and eat clean and am so frustrated to be in this positition in the first place. I am used to being able to find a solution to my problems. I spent the rest of the afternoon trying not to cry in front of my students. The only real solution she gave me was to move to Hawaii, which is not reasonable right now. We have discussed that moving might be in our future and we are putting a five year plan in place. I just felt that it was very unprofessional to give me this news over the phone, especially since she has only seen me in person three times (I've seen PAs the other times). I also think that since she said it might take two years that it confused me that she'd dump me after only one. In addition, she really was acting a LOT different than she'd ever acted like maybe she was having a bad day or something and I got "fired" because of it. The last time I saw her she told me how proud she was of me that I wasn't just laying around accepting my fate because a lot of other clients she had who were my age where on disability, but I was working full time and actively participating in my own healing. Uh, where is THAT doctor and can I have her back? So right now I'm very confused, and of course after an afternoon of feeling sorry for myself I realized I can just go find another clinic but darn it...that was painful!

Oh yes. When I fly if we land in Colorado, within five minutes of getting off the pressurized plane I am in screaming pain. Driving over the mountain passes is very hard as well, although the focus it takes to drive can be a diversion and of course we aren't on the highest peaks. As for the skiing, you are out in the cold and releasing endorphins and dopamine. For me that is a magical combination that helps me to feel better. I can be having a bad headache and go out on a run in cold weather and within 40 minutes feel better if the weather is nice and cold. I also wear a cold hat (helmet, dork-hat). I bet that was part of why you felt good while skiing. Unfortunately it only lasts so long so I can be out running for 5 hours and feel good for most of them, but the last hour or so the headache will return. That's one of the reasons I love distance running. And yes, as Kris and Sara point out, sometimes I pay for it. I've realized that some of my long runs repay me with bad headaches. However, if I didn't do them I'd have a bad headache anyhow during the time I wasn't running. Plus I wouldn't have that time of no pain during which I feel like my old me which I rarely EVER get any more! So it is worth it to run marathons and ultra marathons, or for you to go skiing for the day to be me again!

Yay! We had ours around the same time and I have always been SO happy for you and inspired by you.

Happy brainaversary to me, January 27. yay... Three years post and I never thought I'd still be dealing with this, but I guess that's how brain injuries are. One person gets a nail gun to the brain and walks away fine, another person slips in the bathroom and doesn't. You just never know. When I was in the hospital I literally thought it was a minor deal. I never lost consciousness, didn't think I had much in the way of impact (outside of, apparently, denial). I was told it was "just a little brain bleed...not to worry" from my lovely German Neurosurgeon and that all would be well within four weeks. I won't repeat my complaints about not being prepared for the realities of recovering from an SAH. We've all discussed it before and will, I'm sure, discuss it again. If I ever get the free time and money to become a patient advocate volunteer in neurology I swear to GOD I will help people deal with the aftermath! I guess, in a way I do. Four times since people have steered friends with strokes or concussions to me and I have gladly talked with them, often for months, as they worked through recovery. Even just someone to say "Yes, I've been there. That is normal. I understand." is a huge blessing. In fact in my FB update every year so far I put a PSA about "the worst headache of your life" along with my story of the day I had mine. Someone asked if they could repost it, said they would take my name out if I wanted and I told her no, please feel free to leave it in and in fact if anyone ever had a friend or loved one who needed support, to please send them my way because the people who helped me through my first year were such godsends. I always wondered why this happened to me; not so much in a "why me" way but more in a "What is my lesson to take from this?" and I think maybe the reason is so I can help others with it. I've had a similar experience with infertility. God did not bless us with children, even after treatments. It's okay, He blessed me with the best husband for me, ever. Just seriously, an amazing man and I've always said if that is all I get out of this life is a man who loves me, supports me, and dotes on me, then I am more blessed that I even deserve. So I'm okay with it. But when my sister-in-law married the first thing she wanted was to have a baby and, unfortunately, she too struggled with infertility and sadly was NOT blessed with a wonderful husband. (He is better now, but he was not supportive through the infertility ordeal at all.) She came to me and I was able to be there for her as only someone who has been through it can and I was very thankful, then, for my experience. So here I am three years later...still alive. Still have a headache...but still alive!

I teared up reading your post as today is my third year. I got out of the hospital so full of optimism because, in my mind, I was going to be back to normal in four weeks. I might as well have put it on the calendar and circled it in red. Three years later I have too many days were I think "Maybe it would have been better if I hadn't made it" and I hate that dark place. I'm so tired of having a headache. Tired of coming home and wanting to take a nap, or going straight to bed only to get up and try to make it through another workday. I miss running my business, which has dwindled to next to nothing. I miss the old me. I am angry every time someone tells me to just be happy I'm alive because I am happy I'm alive and in fact understand I'm super lucky! I love my good days, but when bad days follow it's so depressing. I am very proud of myself, though. I reached out to a therapist who helps people with chronic pain with the strong support of my husband. I also am looking into a pain specialist. I think I'm finally accepting that this is the way things are and maybe that will help!

Caffeine dehydrates, but coffee does not as there is WAY more water than caffeine in coffee. However, caffeine can cause headaches so imbibe with care. Darker roasts have less caffeine and more flavor. I really like an espresso roast with a little frothed half and half in the morning and one in the afternoon.

I am SO thankful you can still ski!! Taking away your skiing would be like taking away Win's singing or my running. When I got out I literally thought I'd go straight back to running. My bleed, I was told, was "no big thing" so when I got out I had none of that feeling of being lucky to be alive. My neurosurgeon, in fact, minimized it to such a point that she had me back at work teaching full time the week after I got out of the hospital. I got out on a Wednesday afternoon. On Thursday I tried to get dressed on my own, halfway through I was in tears because I not only was so exhausted I couldn't finish, I also couldn't remember how. She "gave" me another week off, but I think she thought I was overreacting. It wasn't until I saw another neurologist who said "What don't you get that your brain bled and you could have died?" None of it. Didn't get that from anyone!* When I realized that it was as serious as it was, I was SO thankful that I could still run, even though I still have a headache every day, all the time. In fact, the only time I don't have a headache is when I run. It is when I feel like "me". It doesn't always work, but it works most of the time on long runs of at least 90 minutes or more. So I understand 100% what your skiing means to you. I was out running with friends today and took a tumble. As I was falling my first thought is always "Don't hit the head" and second is "Are my legs okay??????" because the thought of not being able to run for more than a few days just makes me queasy. *To be fair, I minimize everything and no one was asking me to do long division in the hospital, or put together a salad. While I did dress myself, it was always just pj bottoms and the same old hospital top so not exactly anything complicated. Put together a salad was the second thing I remember crying over when, the second night home, my husband made a dinner salad he makes often and I didn't know what to put on my salad first and burst into tears. Poor guy. So maybe had I told my doctor that I wasn't able to read, that tv shows confused me, and things like that...or maybe they should do some simple tests like have a person add or something, then my doc would have known I actually had brain damage. I could talk to you like I was fine, but I then middle of the conversation my brain would reboot and I'd forget what we were doing. Of course the doctor would see me for like 2 minutes a day, so how would she even know?