Teechur

Oh sweetie, I am so very very sorry. You and your family will be in my prayers. There is a hereditary link, sadly. I ran a marathon with a friend in honor of her sister who had an SAH the year prior. When I had mine, her other sister was a great help in my recovery because she'd had one as well. My friend is checked every year. The neurologist told her that there is a hereditary link, as has my neurologist. So while yes, it is rare in the general population, it can run in families. Also, since it IS rare there aren't a lot of neuros who specialize in it. Just take one day at a time. Let your sister be background noise and do not allow her to engage you because your mother is still alive and still has a good chance that she will come out of this fine.

It's been 2.5 years for me and I am actually a lot calmer than I used to be because anger and stress feel like such a waste of precious time and emotion. I do still have daily headaches and am in treatment for them. Fortunately not everyone gets those, although I know of three people who were and are extremely active (like me) and deal with them too. I have minor memory issues. Fatigue, for me, does not come from overdoing it physically, but on a bad head day just having to think and work as a teacher can exhaust me.

I never had headaches prior to my SAH beyond your normal tension headache once in a blue moon. However, once I had my SAH I started suffering headaches constantly and it's been an ongoing battle since then. I rarely do not have a headache. Most of the time I have one that is about a level 4 with level 7 or even higher 2-3 days a week. I generally spend at least part of one day in bed due to the pain. Just to give some context, I run ultra marathons for fun and have a high pain tolerance so have never been one to take to the fainting couch at the first tingle of pain. So if I am heading to bed rather than outside to play, it's pretty darn bad pain. I've tried almost every headache/migraine preventative on the block and so far none have been very effective. Propranolol lowered my HR too low and I could only stick to it about a week and a half. My HR wouldn't go up high enough when I was running and it was causing me to feel faint and sick, which the docotor warned me about. Since it didn't help the headaches anyhow I was given leave to go off of it. Topiramate seems to help slightly when paired with Gabapentin. I'm also on Amitryptiline (25mg) down from 100mg. Stupid man doctor put me on 100mg and I gained 11 pounds in 2 weeks. I am a personal trainer and weight loss coach, so that was super frustrating because nothing I did would take it off. When I changed to a female neurologist she said that she never puts her female clients on that high a dose because of that. It seems to impact us more than men, and the impact isn't worth it. I would suggest that you work with neurologists over GPs. It is not likely that you have migraines. What is more likely is that your pain neurons in the area surrounding your brain have been damaged to the point that they are over-firing and it will take time for them to calm down. This is way beyond the scope of what a GP can do. I'd really suggest a headache specialist, particularly one tied to a University or teaching hospital of some type (I go to the University of Washington Headache Clinic and see a team of doctors). My GP tried to treat with pain medications and it wasn't until I was seeing the headache specialist that she explained that they would not only not work (they don't) but actually slow down healing and cause more pain in the long run. My regular neurologist tried only migraine treatments because that's what he treats. We don't tend to get migraines in adulthood unless there is a family history of migraines. If there is a family history and you have the genetic markers, but they aren't "turned on" (my neurologist explained to me), brain damage from an SAH can cause them to get turned no and you can become a migraineur. However, if you do not have the genetic markers, have no family history, and have never had migraines the likelihood that you will become a migraineur after an SAH is slim. You are more likely dealing with still healing brain and pain neuron damage. I know Wade from here also deals with chronic daily headaches as well. He also had a full workup and got a similar diagnosis, if I recall correctly; over-excited pain neurons that simply need time to heal. Incidentally, it isn't only pharmaceuticals that my doctors have prescribed. I am also taking supplements (magnesium, CoQ10, Feverfew, Alpha Lipoic Acid, B12, B2, and a few other things), have been prescribed daily sunshine or a sun lamp, and daily exercise both cardio (running was suggested as the best exercise, much to my pleasure as I am a runner) and weights. The one thing I get different from you is that my headaches move around. They are not always in the same place. I also keep track of everything and have found mine are very responsive to changes in the weather; when the barometer moves up or down, my headache intensity moves higher. If it stabilizes and we have the same weather for awhile then the intensity drops off. The pain does not drop with dropping or rising of the barometer, unfortunately so it isn't "good weather makes me feel good" or "bad weather makes me feel bad" it's just changing weather makes me feel bad. I live in the Pacific Northwest in the US where the weather changes all the time, often more than once a day, so this is a real challenge for me. It can be barometer rising in the morning as the rain moves towards the mountains, then falling in the afternoon as another rain front comes in from the ocean. A thunderstorm coming will put me UNDER, not just in bed. Today is a good day with a light headache, but I'm awfully dizzy. However I think I will be able to run after work which is a big "yay!" So you might want to also track things like weather changes. Light and sound can bug me too, but they seem to bug me more in response to headache, not bring on headache. They can make a bad one worse, but not make a good day bad.

The odd sensations scared the carp out of me (yes, creepy little fishes were literally scared out of me) when I had my SAH until I found a website explaining that they were normal. Now a lot of my sensations, I think, are due to medications. I am still a dizzy blonde (or really more redhead) because of the SAH, but the Topiramate that I take makes my extremities tingle a lot. It's not a huge deal, so I just ignore it because I do think it might be helping some. It at least has helped with my weight gain from the amitryptiline, that's for sure!

I swear I could have written that, and probably have written something very similar a time or two! I often feel only like "me" when I am running. It still, after almost 2.5 years, is the only time I feel completely balanced (as in not dizzy), no pain, and like a whole human being. My neurologist says it has a lot to do with how endorphins and dopamine are released with the activity but also with the ability to practice dissociation. When we are busy our mind is sometimes able to dissociate from the pain we are feeling and I think of it as almost "rising above" it. Unfortunately we can't do it forever, which is why when we stop or slow down the pain returns and we feel it sometimes worse. My main neuro said there is a psychologist in Vancouver, WA who teaches how to practice mindful dissociation so I'm going to try to get to see her sometime this summer. I would love to be able to do it without having to go on long runs (although I love long runs, and the benefits they bring I can't always do them because the pain is too great or I don't have the time). The weather here has been very changeable lately which means I have been misterable and really kind of hating life and my head and my SAH and the whole enchilada. (Not really, but you know what I mean.) Weather gets me down tremendously because with weather change comes pain and when I can't overcome the pain I get depressed. Really thought I'd be through with this by now since my SAH wasn't a bad one, but I'm not. Pffffffft. Stupid Spidey.

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)