Teechur

I'm 2.5 years in and while things are definitely better, I'm to the point where I've told my husband that if next year doesn't get better it will have to be my last year of full time teaching. We have 12 sick days a year so I am missing too many days without pay. I still have too many days I can't get out of bed. Yet most days (4 out of 5) are manageable and I love my job. My kids are awesome, my staff is good. I'm sure some talk behind my back but I don't worry about it. I know my symptoms and my life so I can't let that bother me. (I still say the very best part of the SAH is my totally laid back attitude that came with it.)

I do sometimes get concerned that the administration will, at some point, say "Uh, okay. We can't carry you any longer." but when I start to worry I just remind myself that I can't control that. I still have so many blessings the main thing that makes me sad is that I hate the idea of leaving the classroom. Teachinig isn't only what I do, it's who I am.

Which part of my experience? I've always had the runner's high to some extent once running got easier. I just enjoy it. Because at one time I was very overweight and out of shape, running was something I never dreamed I'd be able to do so I have always found it very empowering. Once I hit that place where it no longer was super hard every time, I've always found something in every run to love about it.

I do think that now there are times it seems harder because of the headaches so starting out can seem a lot harder because it takes a bit to get warmed up and into the grove of things. Once I'm there, though, it is so amazing to feel like me again I just sometimes want to keep going and going and going and never want it to end.

I do crash harder after, though, but I don't care. I haven't actually thought too much about it because if I rest up I'm fine. My doctors don't think I need to worry about that; it's not doing any damage. She did say it might slow complete recovery to some extent, but that the payoff of having some normalcy right now along with the benefit of the healthy body is probably more important than a few extra months it'll take for recovery.

I do think our bodies are very intersting post SAH. I can walk and be very stumbly, yet run even run on trails and be very sure-footed. It's almost like how a stutterer can sing and not stutter. I find relief, massive relief, in fact, from a lot of my neurological symptoms from exercise if I can do it in a session that lasts a minimum of an hour. I tihnk part of it is muscle memory, part is definitly adrenilen and part is just the runners "high" that is so elusive to scientists. A runner is who I am. It is a big part of my identity.

I may pay for it afterwards, but I also pay for it after a weekend of going to the theater and going out. Does that mean I'm going to stop living? Heck no!

I haven't had neuropathy tests, but I wouldn't be surprised to find some there because I am stumbly and often have to balance myself. There are days I considering pulling out my cane, and I am always still looking at a path from point A to B to see what I can grab onto if I have to. On bad days I walk near a wall just in case. My coworkers know it's a bad day if I'm being a wall hugger.

Wow. I was very fortunate. I didn't go in right away because I thought I was being silly to go to the ER for a stupid headache even though the pain was excrutiating. When I did, within ten minutes they had me in and within 20 minutes I was getting a CT scan and was immediately admitted. Such a blessing that they have a good neurology program at Providence Hospital in Everett, WA. I even had a former student perform the CT scan and she was an A+ student so I know she did an amazing job.

I guess if a person were considering a lawsuit they'd have to weigh the benefit vs the stress. Compared to some of you I am doing fantastic, but that kind of stress would send me off the deep end. I don't think it would be worth it, although I wouldn't want to see it happen to anyone else. It's a hard call.

A very happy re-birthday! One blessing of this whole scenario is that we DO get a do-over and it gives us insight into things that others don't get. You are so right. We don't have to do anything to to be worthy, we simply have to be.

One of the things my PT said to me is that through all of this one blessing is that I got to see how much people cared about me. So true. We see that in our real lives. We see that here from members who return, like you, to share how far you've come and to see others through the beginning stages after the SAH.

Happy happy birthday!!

Thanks everyone. My current neurologist completely believes it is related to the SAH so that's not a problem. I think I worry about those shows where they do the gotcha "This person is living on disability but look at him lift that tree off of his truck!" i.e. "She can't teach (spelled it teech the first time, ha) but she can run 50 miles! What's up with that?" It's thinking...thinking and having to make fast decisions coming at me all at once K I L L S me! I love it. Love my kids. They are my heart and soul during the day and are so VERY good to me.

On school breaks I have a single focus and it is so nice. I wake up, I go for a run, it's at my pace. I know we ALL wish we could do that, but the difference is when the head is bad I can control the rate at which I deal with things. I do still have bad days where I might have to spend the day in bed. Right now we have decided that I'm going to work next year and give the treatments another year, but I do have LTD insurance and we're continuing to investigate it. I'm out of sick leave as of the end of February so I'm going to attempt to limit days at home as much as possible.

On a good note, spring is here, the days are longer, I had my meds adjusted and woke up two weeks ago one day without a headache for the first time in over two years!!! That has made me so hopeful. It lasted for about 90 minutes and gave me some real hope. It hasn't happened since, in fact I had three full days in bed last week and it was awful but still...yay!

Sometimes I feel like I feel "wrong" if that makes any sense.

I know I am so blessed that I did not die, that I don't have any more deficits than I do. But I am so tired of being in pain every moment of every day. I mean there is not one moment in a day that I do not have a headache. Some days are better than others where my head is only at a level 3 or 4. It hurts but if someone asks it isn't really so bad that it is front and center in my day.

Right now, though, 5 out of 7 days a week my headache is so bad that I can't focus. I still work full time as a teacher and love it. We talked about me going down to half time, but teaching doesn't make it worse. It would just add financial stress and the headaches are just bad or not bad regardless of what I do. I can sleep and that helps, but it's not healthy for me to do that. I can't be sedentary because a sedentary lifestyle is so unhealthy so I can't do it. Plus I'm a personal trainer, and while I do have a helper who takes over if my head is bad and I listen to my body, I have that small side business to run.

I feel like I should slow down, but I don't know how to because financially, I can't afford to. It is also very hard in the US to get disability for migraines. I do have long term disability insurance that would pay 70% of my income, but again it would be hard to get it.

I'm just so tired of the pain. I am considering seeking out a psychologist who deals with chronic pain issues. I worry that this will be the rest of my life and I just get nauseous thinking about it. I am such an up person by nature and thank God I am! I'm not sure I would have lasted this long otherwise. But I can say that now I am really starting to deal with some depression and I'm just so damned tired.

My neurologist who is a headache specialist says this isn't forever, but it's so hard to believe at this point.

I'm so sorry you had to take medical retirement, John. As a teacher, I know how much my role in the lives of my students defines who I am.

Now you have a great opportunity to redefine yourself as a new person. It might mean you find a way to mentor as a volunteer, or you go into a whole new type of life. I don't know, but it sounds like you took some time to mourn and you're ready to move forward. I envy you in a way. I love who I am and what I do, but sometimes I feel like it is slowly killing me, but not enough to take disability.

I'm so sorry you're in pain. There could be a lot of reasons that aren't another SAH that are related to your headache. I also get gripping headaches, and have since my SAH over two years ago. My doctors have diagnosed it as pain neurons that are overactive and will, eventually, settle down. I've had many MRIs, MRAs, CT scans etc and everything is fine. I understand how scary it feels, though, to have head pain.

I have another friend who had an SAH about 9 months before me who also has daily chronic headaches, and Wade who is also here on BTG gets them as well.

I'm not poo-poohing your pain, so please don't think I am. I'm trying to reassure you that I understand how worrisome it can be, but it can also just be left over from the blood in the CFS and part of the healing. Do go see the doctor, but don't borrow worry. Healing from an SAH takes time and we all have many different sensations including pain (gripping, burning, pounding, cramping, etc.)

I was on a BIG dose of Amitryptiline and it caused me to gain a lot of weight; like 9 pounds in a week. I fought to keep it below 15 pounds overall (I am a personal trainer and weight loss coach so that was important). When I changed neurologists she immediately lowered my dose down to 25-50 mg per day (I was on 100-200 per day) and she said she never gives female clients that much because of the weight gain. I also hated how tired it made me. Now I'm on Topamax, Gabapentin, Ami, Lexapro (to slow the uptake of serotonin) and a bunch of supplements trying increase the production of serotonin and other natural pain killers, while calming my pain neurons. My current neurologist is a Headache Specialist and she says that the pain neurons are on overdrive and we have to calm them down and it might take a very long time.

Most of the time I'm okay with that, but on super bad days I get pretty bummed out. Yesterday was really bad. Had to go home from work and lay down in bed all day grading final projects with dogs sitting on them. It wasn't restful, but at least I got to lie down and binge listen to the show "Girls" and relax until I had to go to bootcamp, where my partner in crime (who is literally about to have a baby any day now) sent me home.

Today is an okay day...headache at about a six, but it is what it is! Moving forward!

Two years ago I was going in to see the movie "The Descendents". I was holding a diet Coke and had just finished talking to a friend. I turned around to follow my husband into the movie and it felt like someone hit me with a 2x4 in the back of the head. I grabbed my head and said "Oh my God Roy. My head! Something is wrong!" Then I felt stupid and stumbled after him. I don't think he heard me. He said "Are you okay" and I said "I think so" and thank GOD the theater was right near us. I went in and sat down and thought I was going to throw up, it hurt so bad. I thought I might pass out, it hurt so bad. I was doubled over. I started to say "I need to go to the ER" and I heard Roy say "Do you want to go home?"

Then I thought, "This is stupid! Grow up! It's just a headache." I said no and laid back in the chair, pulled my hood down and tried to breathe through the pain. (I know. Stupid.) I stayed. He stared at me and then asked me if I was sure. I said I was. Of course it was dark, so he couldn't see I was sweating and probably pale. When we finished the movie I told him I wanted to go home to bed so I did wearing my hood. I took two vicodin we had left over from an injury and tried to sleep the pain away. Finally I pulled out my laptop and turned the brightness down and typed on FB "I have the worst headache of my life. Is this what a migraine feels like?" Within moments my friend, Amy, who was an EMT, started texting me to go to the hospital. As people replied to my FB update, everyone with a medical background was saying the same thing. When Amy threatened to call Roy, I said okay. Stumbled out to the kitchen and told him, "I think I need to go to the ER." He literally dropped what he was doing and off we went.

I felt stupid going to the ER. I had never heard it could be a sign of a stroke. Thank God our ER has a good neurology unit. I was admitted and stayed for three weeks.

It wasn't a bad bleed, thank God. Most of my symptoms are gone. Because I started in excellent health (I'm a marathon runner and personal trainer), my blood pressure and heart rate was super low and they figure that's why it wasn't worse being that I waited six hours to go in. (Since I sat or laid down the entire time). Unfortunately, I live with chronic dailly headaches. I have not had a single pain free day in the last two years...not one. However, I am back to running marathons and ultra marathons. That is a HUGE blessing.

I have learned to embrace life and to let go of stress. Stress causes my headaches to shoot up, so if something causes stress, I let it go. It's lovely. I haven't learned to slow down and I may never, but I have learned to ask for help. I have become slow to anger because anger really is an issue for my headaches, so everyone benefits from that.

Still frustrated at the thought of living with headaches for the rest of my life. Haven't found anything that helps except, curiously, long distance running and eating. Both work for a short period of time. I've tried nearly everything else; elimination diet, pain medication, supplements, relaxation techniques, acupuncture, massage, etc. I've been inundated with ideas from well meaning friends who don't understand that it is NOT caused by gluten and no it isn't the same as when your 92 year old father in law had a stroke. After awhile I just want to scream SHUT UP! But I don't...although at least once a year I have to remind people that I understand they mean well, but I prefer to take advice from my medical team.

I do appreciate that I'm still alive but I also will admit that I get depressed more as the time goes on and the head keeps on banging! Could be worse, though and most of the time I'm still happy clappy.

Someone who listens is SO important! We are not patients, we are people. Even though they have heard it all before, we have not experienced it all before. There are many things that are life changing in people's lives. When it happens we don't know so much...why it happened, what is next, what it means for the future. We need somone to listen and reassure us, but also to be honest. If they don't know, tell us.

Mary I am so glad you got what you needed. Life is too short, it should not be spent in pain and frustration. It should be spent with your puppies and your family!

Thank you Daff! I also have become very interested in Neuroscience. I believe we know so little about the brain, and in a way I also find that comforting. I just find it all very very fascinating. I think I have a very good neurologist right now, but I believe the more I learn the better I can advocate for myself.

What a great thread!

It's been two years and I need to work on two things; gratitude for where I am and I need to give up going back to the old me. I am SO lucky I can do almost everything I used to do, I just can't AS much all at once. I am back to running.

I want to be back to the person who got up before work and went to the gym, worked all day, came home and ran 5 miles, and then taught bootcamp. I may not be that person again, but I can run 5 miles after work, which is more most people can do. I can still teach bootcamp, even with a bad headache...I can dissociate for an hour and then go home and go to bed.

So I need GRATITUDE AND ACCEPTANCE!

Sue... Living the good life and thankful for good days here. Still searching for answers on the daily chronic head pain, but am doing as much as I can naturally to deal with it.

Yay Sue! I think of you often! So glad you're doing so well. You helped me through some very dark times. You had yours shortly before mine. I am so thankful that you're doing well.

I dodged a Pancreatic Cancer bullet in 2003 and spent a year recovering from that, so I already had the "appreciate every moment and take a bite out of life" thing going on. I already appreciated my life, and I already took very good care of myself and never EVER took my health for granted. That taught me first and foremost to put my health and well being first. It also taught me not to sweat the small stuff and gave me a lot of zen. I came out of that a much nicer, better, and stronger person.

I think that's part of the reason I am having a much harder time coming to terms with this situation. I "got" the message before and I was already taking such good care of myself. I did nothing to put my body in any situation that would make it likely for me to have any kind of a stroke. I was already zen, and kind, and never took any day for granted.

But it did teach me a few things that I missed before.

1. It taught me to be more patient with people who might not move as fast as I'd like since now I don't move as fast as I'd like.

2. It gave me a deeper understanding for my students with information processing issues.

3. It has forced me to slow down even though I don't always like that.

4. It has forced me to ask for help more often, and I don't always like that.

5. It has probably taught me more humility than I like.

I'm almost two years post, so I hope to the good Lord above I am not done healing and I also hope I'm still discovering the purpose because for someone who usually makes Pollyanna look like Debbie Downer, I can feel pretty dark at times!

I worried about it quite a bit, but have had very few problems with it. Maybe a slight increase in headache if there is also a storm going on (but that's normal for me).

Exercise, no matter what kind (doesn't have to be strenuous) has a highly beneficial impact on building neural pathways so adding even a small amount into your day is useful. If you did even small amounts of PT you might have done things that seemed "odd" that had the purpose of rebuilding or stimulating neural pathways. It is also beneficial when you're trying to learn new material to do it while moving (most of us are kinesthetic learners, so pairing trying to learn something with movement helps our bodies make a brain-body connection).

There is nothing wrong with using things to help you remember. I used my iPhone to remind me of things ALL the time when I first got out, and still do. At 7:00 every Mac product in my house says "Take your medicine" so even if I'm not in front of a computer or holding my phone, I'm going to remember doggone it! Roy got me a pill minder to sort the pills when I'm feeling good so I don't have to think when I'm not feeling good.

Other things that help...dog feeding, put the bowl upside down after cleaning it. If it's upside down you haven't fed the dog. Before the pill holder thing, I'd put my pill bottle upside down so I knew if I'd taken the morning dose. Hang things I need to take to work on the door. I also set "time to leave" alarms and things like that.

So well said Kris. I just got a message on another board where I was looking for someone, anyone who had ongoing headaches after an SAH (a SAH...gah). Of course no one else had had one, but the good thing is someone else just DID have one and he found me and I pointed him here. He's been reading *waves at Mark* and I hope he joins.

We need each other because there aren't other support groups out there or ribbon campaigns or 3 day walks. Don't get me wrong. I am not against ANY of those things and I am glad that they are there to support my mom on her issue right now but at least there is a light in the distance when you are thrown into that scary ocean of "cancer...now what?"

If I hadn't gone out on the net on my own to try and figure out what in the WORLD was going on with me after I got out of the hospital I would not have found sites from the UK (thank the good Lord above) and ultimately this site.

There was nothing from the US of any help whatsoever that I found beyond a few lines in stroke information. Even when I recently took my First Aid certification I had to raise my hand during the "recognizing signs of a stroke" part and say my personal PSA "The worst headache of your life" and the guy who was teaching it sort of responded as if I were criticizing him, "Well we're only allowed to teach what the material tells us." Uh Dood...whatever. I am telling you that one of the signs of one kind of stroke is the worst headache of your life, don't quantify my input. Say thank you and good point and write that down.

It is all oxymoronic how we feel. I feel great how far I've come, but resentful I haven't come full circle. I'm glad that people treat me like I'm normal, but sometimes want them to understand I'm not. I don't want to talk about it, but I want to be asked about it. Don't give me advice, just listen. Don't ask about it, but do.

I've finally come to the conclusion that however we feel at any given moment is right...there is no wrong way to feel. So if you feel at any given time:

Proud

Sad

Angry

Victorious

Depressed

Like Singing a Song (Win)

Like screaming

Like taking life by the throat and showing it whose boss

Like crawling under the bed and hiding

Like telling the next guy who walks into you as you're struggling to regain your balance where to go and when to get off.

Like helping someone else across the street because you get how it feels to feel imbalanced

Happy

Snarky

Funky

Fluffy

Like running a marathon

Like vegging with the telly

IT IS 100% OKAY (although it's probably not okay tell the guy where to go and when to get off 'cause he might deck you)

It is so interesting how collectively we say how we are all feeling at times.

What really hit me was the comment about the wheelchair. I was having a really bad day on Sunday and I really just wanted to stay in bed. However, we were celebrating my husband's birthday. I was angry because, once again, my head was intruding on my ability to make plans and execute them.

I told him that in some ways it felt almost harder to have this sort of healing because some days I'd be able to do things, and then people would think I should be able to do them EVERY day. Then on bad days the depression can hit SO hard.

We used to joke that my "Lifetime Movie" would end with me crossing the finish line of the New York City Marathon but the truth is, there are days that are great and I'm out there doing stuff and feeling like "suck it brain!" and then there are days where I'm shuffling along hugging walls wearing sunglasses wondering if I should shutter my business and quit my job and how would we live if I did that. I had to laugh, then, when I saw you guys writing about "Oprah" moments. Nope, it isn't like that.

What's it really like? It means your loved ones have to upend THEIR lives and put up with "Not today and maybe not to tomorrow and probably not the day after" and thank heavens if you don't have kids because it's hard for them to understand. I find myself resentful that someone in my family right now has (thank the good lord) a very early caught form of breast cancer and the entire family is wearing pink ribbons and I'm thinking "Where was my red ribbon?"

A friend reminded me that I didn't complain, and in fact understated it and kept saying it was all okay, nothing, in fact. People "get" breast cancer is bad. They don't get "brain bleed" or "subarachnoid hemorrhage". That sounds like a pregnant spider or something. They assume that if you're talking to them without drooling, you're okay.

Often I tell them, and they immediately say "Oh but it looks like you're fine now..." so then it's "Do I say, 'for the most part' or do I really tell them or does it matter?" and of course what they WANT to hear is yes because they don't want to hear that a super health conscious 47 year old could have a stroke, especially if they are NOT super health conscious.

It's having a million things to do and the brain power to barely do two. It's trying to figure out when in your week you can slow down, realizing you can't, and just powering through anyhow. It's having to call for a ride because it's not safe for your to drive. It's being thankful you're alive one minute, and wanting to kick the teeth out of the next person who tells you "You should just be glad that you're alive." because it's not for them to tell you how to feel.

Then it's feeling guilty for feeling that way. It's all the little things you can still do like snug your puppies and enjoy your husband and the changing of the seasons and good friends.

It's just life, but with some extra spice thrown in. Sometimes I love it and sometimes I just want to go jump in a creek. Fortunately most of the time it's the former.

Maybe the high sugar cravings post SAH is that it's the brain's fuel is glucose and when it is healing it requires more. When I first got out I seriously wanted to mainline sugar. I don't know if you have Peeps in the UK but they are sugar covered marshmallow or in other words, sugar covered sugar. I wanted to INHALE those things following my SAH.

In addition, I went on a medication for my headaches that caused me to gain 9 pounds in one week. The only good part was that prior to that I was on a medication that made me not want to eat (Topamax) and I had lost 7 pounds so I was at a good weight. Unfortunately I gained another 4 pounds. I'm down about 4 of those 11 pounds, but still can't seem to get the others to budge, and I do watch what I eat very closely. I journal my food and exercise almost daily (unless the headache makes it impossible, so a few days a week I may not be able to).

So I feel your pain in the gain department. A few pounds up (I want to be 125, I'm 132) may not seem like a lot, but I'm a personal trainer and weight loss coach and it's a little embarrassing not to be able to get those last 7 pounds off. However, it's all medication. I'm still on a lower dose of the amitryptiline and it just hates me. I wish I knew what was making it do that.

This should be stickied because I think it is so beautifully put.

We are not statistics we are people. Every doctor needs to hear that again and again and again. A few things I would love to be required to be removed from all doctor's vocabulary:

"You should not be feeling ____ at this point."

"I don't know why this still hurts." unless followed by "but I'm sure as heck going to find out what's going on!"

"None of my other patients have had ___ this late."

It makes you feel like you're "doing it wrong"

I also wish that people would understand the pressure they put on us to "feel better" when they say things like "Well it could be worse!" or "At least you can still ____"

Yeah, it could be worse and we know that, but doggone it takes a long time to mourn what we're no longer able to do. Plus, I don't know about you guys but I seriously DO feel guilt at times because I know I'm lucky to be able to do the things I do but at the same time I still am frustrated at the limitations I have.

Like I should feel lucky ALL the time.

But they mean well so I don't blame them. I'm just happy we have here to learn from each other because it helps when you get out and you have no idea why you feel the way you do, and the doctor releases you with a "Ciao" and "see me in six weeks" and "go back to work next week" and no information about what it's like after a stroke. Then you have one doctor who says yes you had a stroke and another says, it wasn't a stroke, and you just want to say galloping ghost on a great white! Call it Jehosaphat for all I care, I have a headache and I keep running to walls! Then that doctor is too busy following protocols to bother to ask you if it even HURTS or how or where or why or when.

Keep looking for a good doctor. They are out there. I think I have one now, thank heavens.

The hardest thing for me was when I had to cancel all of my fitness classes the summer after mine. I felt like I was admitting defeat. (This was because I had been told I could return to full time teaching four weeks after my bleed so figured teaching summer class, five months later, would be no problem). I just did not expect I'd need to do that and I felt like I was letting others down, losing business (I lost a LOT of business as well as some long time customers who suddenly decided I was 'milking it' when one of them had a TIA and decided it was the "same thing"), and costing us money. Plus I was angry that my body was letting me down.

It won't be forever! I wish I'd slowed down sooner. You're being smart!

How dare a doctor tell you that you don't have headaches! Excuse me??? Do you not live inside your body? I'm okay with a doctor saying "I don't know why you still have headaches" but to say "You can't be having them" is ridiculous.

Yes, you need a new neurologist. And I absolutely refuse to believe that living for the rest of our lives with chronic pain is our new normal. We have to keep seeking treatment and advocating for ourselves. Maybe it WILL last forever but we can still try.

The problem with Florocet is that it can in some cases cause rebound headaches. Because of that, my neurologist does not want me to take it more than once or twice a month. (We call it Vicodin here.) The goal is to calm down the pain receptors and because the Vicodin can cause them to actually be hyper-sensitive I can't take it too often. Plus, I really can't take it while teaching.

You're so early in the recovery no one should be saying you should or should not be feeling this or that. My new neuro said, in fact, that there is no "timeline" on brain injury recovery and was surprised that my first neurosurgeon said my headaches would be gone in 4-8 weeks.