Teechur

Thanks Julian. About a week ago he had another stroke behind his left eye and lost most of his sight in that eye. They have no idea why it's happening. He doesn't have high blood pressure and there are no aneurisms. I think he needs better doctors. He's seeing one of the same ones I see just for Botox treatments. I think he needs a neurologist who is more up to date, and I think I've finally convinced him of that as well.

You are really coming along Julian!!!! Love it! So happy for you!

Carolyn, my Stars and Stripes buddy, I too am extremely positive. Being positive does not mean we don't feel our feelings. Not in any way. It means that we acknowledge them, but still choose to soldier on and be thankful for each day. I'm not necessarily yet thankful that this happened but I am thankful for every good day I have and for the amazing life the Lord has bestowed upon me. Even my neurologist remarked on how much my positive attitude has benefited me. She gave me a big hug at my last appointment and told me she was proud of me because most patients she has with my condition are home in bed and not working. 

One thing that I have started to realize is that things do happen for a reason and that the reason for this is coming clear slowly (that has been part of what I've been frustrated with). My nephew has been suffering a series of small strokes and these strange migraines that mimic strokes. Sometimes he'll be paralyzed for a few days. It's really scary. He has, from all of this, chronic daily headaches! Welcome to the club, nephew! When he is at his wits end, he has me to turn to to listen. I let him vent and I I understand and we always come to laughter because you have to laugh because you can't cry all of the time! He is way worse off than I am. Poor kid. He's in his early 30s.

I'm sorry, Win. I do love your sunny attitude and I don't want you to change for ANYONE, especially not for me. I guess what I was trying to say, in a not very eloquent way, is sometimes we have to feel what we feel and not try to gloss over it because it's important to let out anger or frustration when it is there. Then, at least for me, it is SO much easier to get back to life is good .Because it really is.

I am a WAY more glass is half full kinda gal, even if it doesn't seem like it. Had a good day yesterday, but today we're in the midst of three big storms and the barometer changes are wreaking havoc on my head.

Macca that is scary! I did email my doctor on Monday but she hasn't replied so I don't know if she got it or not. I'm not sure what to think. I wonder if it's medication side effects cropping up. I am on Duoloxatine (Cymbalta) and one of the side effects, which is rare, is amnesia. So could be that, I suppose.

The weakness in my jaw could also be related to that medication. Scares me because it's the only thing that's worked at all, but I don't really want to get lost driving home from work, or lose the ability to chew my food because well...that would be embarrassing!

Oh Carolyn, owie! That totally sounds like something I would do! Be careful! I'm assuming that, like me, you do NOT have six dogs to trip over. I'm amazed I don't fall more often at home. I am running a race this weekend where, last year, I fell flat on my face without breaking my fall and got a concussion. So I'm hoping that will NOT happen this year.

On 12/6/2014 at 19:20, Winb143 said:

My Surgeon was very good, he is matter of fact ie no chit chat, just the facts. 

 

He knew what he was doing, thank goodness he kept a close eye on me.

 

He told a nurse "I do not want that bedsore turning into a four".

 

My hubby had a male nurse he could ring when he was worried about me.

 

So listening to you all I was lucky perhaps it was the ventriculitis and sepsis I got

while in hospital that I got and needed extra care.  My poor family suffered xx

 

Let's all get better and when we have bad days say to ourselves "Life is Good" 

and smile xx

Be Well All

 

WinB143 xx

I believe I had a great surgeon, but I think she just didn't have a great bedside manner. I also think that, in part, I minimized so much and kept such a happy face when I was feeling horrible that I communicated that I was better than I was. 

I had EXCELLENT nurses throughout. I can't complain. I had a bedsore during another health issue from the lack of care of one nurse (the only one I've ever had bad care from) and it was horrible. Those things last for a long time. I had to have it debrided weekly for months because it was on my coccyx and I'd lost so much weight I had no fat so the bone was coming through. Sexy!

No offense, but it's very nice to say "On a bad day say 'life is good' but that takes away our right to have a bad day." We have to all heal emotionally in our own time. That is like others telling us to be happy we're still alive. We do understand that we are lucky to be alive, however we are still allowed to feel frustrated on bad days, and upset that this happened to us. I know that you suffer a great deal and I appreciate your always up attitude, Win, but sadly not all of us always have that.

When I am suffering from a bad day I can't simply say "Life is good" and take it easy and go back to bed. I have to still go to work and be a teacher and be up and caring and notice when  child is having a hard day, and keep my temper even, and respond to emails and work stress so it's hard on days like that to say "Life is good" because while, overall, it is good when I feel like garbage, it doesn't feel very good at the time. To suggest I shouldn't feel lousy about my situation on days I don't feel well is to take away my right to deal emotionally with how I am feeling; with how any of us are feeling.

I'm not a Debbie Downer, trust me. I think it might be because I was told I was fine in the hospital and maybe because you were given honest answers that you are able to have a better outlook. I was told I'd be completely normal and all my symptoms were mostly from the meds I was being given and anything I was dealing with was just temporary and would go away. Yet I am still coming up with new things.

My latest fun thing--I have started to forget what I'm doing while I'm doing it sometimes. It's happened 3 or 4 times in the last 3 months and it's scary as all get out! Happened yesterday on a run. I suddenly found myself crossing a street and didn't know where I was, why I was there, or what I was doing. I had to talk myself through it all until I could remember I was on a run. I started to have a full on panic attack because I was completely "lost". So that is officially Not Fun and not something I can say "Life is good" about because it scared the poodles out of me!

I feel like I can't LIKE your post because I agree you.  All levels of neurosurgeons (1st, 2nd and 3rd) should have been more honest or kept their ill informed opinions to themselves.

 

How can this be allowed to happen today?  All they need to do is record a video, update it every quarter to take into account any advances the establishment makes in treating SAH then give patients a link to it and this forum.  Done.  No time wasted.  No false hopes created. Realistic expectations set.  Helpful support ensured.

 

Grrrrrrrrrr.

I agree! My current neurologist, who is at the University of Washington Medical Center in the Headache Clinic, and continues to her  education CONSTANTLY could not believe that A) I was given a timeline for any kind of healing. She said the brain heals at its own rate and there is no "typical" way anyone heals. Bones heal at a typical rate. Brains do not. that I was told I could resume my 'normal' life because there is never any guarantee with a brain injury that a person will return to the life they lived prior. They may be impacted in some way forever, or they may have, in some way, a better life. 

I swear if I were independently wealthy I would start a TBI outreach for patient advocates. I remember a nurse practitioner coming in and giving me some information on vasopasms, which I really appreciated. She also gave me information on my bleed that helped me to understand what was going on. My neurosurgeon was not happy about that. She said it shouldn't apply to me because it probably wouldn't happen and I shouldn't even worry about it. Well then why was I in the hospital and being doppler tested 3x a day if not for vasopasms? I am not a stupid woman, so don't treat me like one.

My current doctor actually assigns reading, gives me books to read (medical books for med students), and knows that I want to participate in my healing, not just sit there and say "Fix me." She knows that if I am given an assignment, I will follow it but if I have a question, I will ask it. I just wish that someone had been there to say "Wait, she needs to know this about her situation..." because the only people who told me anything were here and my PT who had worked with TBI patients, but that was well after I was out of the hospital and completely confused with what was going on.

LOL Iola; literally LOL. My memory is SO bad since the SAH but it might be the meds (Topirimate). I agree that I had every single one of the epiphanies you had and feel EXACTLY like you. I am closer to God, I see beauty in everything. I seriously NEVER sweat the small stuff any more.

One of the eternal blessings of this situation is that I simply can't give in to stress and drama, even though I worry that sometimes on this board I come across as negative. I tend to come here to vent because all ya'all "get it'. If I get stressed, my head hurts worse so if it starts I just say "Tory...let it go!" and I do! I am so freaking calm I'm almost TOO calm at times, but it's wonderful. I don't often snark, I rarely lose my temper, I am just zen. 

But like you I just don't feel like me. I remember asking a friend who also had an SAH about a year before mine, when she started to feel normal again and when she said she still didn't, it really was an eye opener. She still has headaches as well and she's almost four years post.

I am SO glad you're doing so well Julian!! Love reading your progress, even if your photo squicks me out a bit every time I see it.

Neither my consultant/surgeon (with whom I never actually spoke 1 to 1), any of the doctors/consultants at the hospital or my own doctor from the local practice has said anything about expectations of what I should be getting back in terms of life.  Nothing.

 

Only behindthegrey forum members have shed light on that murky subject.

My original neurosurgeon and my second and third neurologists both said I'd be completely normal and I believed them. I wish they'd been honest when the reality is that only 15% of people return to a completely symptom free life. I think if I'd been told from the start that I might not return to my previous state of health I might have been more realistic in my expectations. At the same time, that probably would have just made me more driven (because I'm like that) to return to normal. I do live a pretty "normal" life for most people. I am way more active than the average American, which makes me doggone proud!

Sometimes it felt, to me, like someone was pouring water slowly over my brain. Other times my head felt detached. I remember I was eating a Peep shaped like a rabbit (marshmallow candy covered in sugar because after my SAH I craved sugar like a BEAST). I took the head off to eat it and looked at it, laid the head down about half inch above the body and took a picture and posted it on Facebook to share that it was what I felt like. I found that sometimes things like that, images, helped others understand.

For awhile, a long while in fact, I couldn't stand to be touched. Even my clothes bothered me. My husband could touch me if I initiated a hug, but if someone came and hugged me the surprise touch would literally burn. It was a form of parasthesia (strange sensations felt on the skin) that was no fun at all. I had to communicate to everyone not to touch me. I felt bad because, of course, everyone was glad to see me and wanted to hug me and had in the hospital. In the hospital it didn't bother me! I was on a lot of painkillers in there, though. 

I'd cry out of the blue, but was told that was very very common in traumatic brain injury. I found that odd since I (I insisted) did not have a TBI. I also had these strange tremors and spasms. I thought it was the meds. I couldn't talk without seizing up. It was so strange. Fortunately that lasted only about a week or so. I didn't want anyone to see me during that time because I was in so much pain. It felt like I was having charley horses throughout my entire body. 

All of this, Ms. Denial assumed, was due to medication. I fell a lot when I got out because I was clumsy...went through physical therapy for about a year. It's all gone now, just the headaches and the imbalance! I always was a dizzy blonde, though.

It does get better, though. I promise!

That is an excellent idea, Kris. I used to keep a headache journal but when every day is " Yes, I have a headache and it hurts...today it's a level ouch. Today is ouchier. Today is less ouchy" and then no one looks at it, it gets old doing it. However, maybe an hourly where I just log headache and energy with a mark would be very helpful throughout the week. 

Great idea!

My doctor told me 12 to 18 months to feel "normal" again but not to compare to who you were because you were no longer that person. Well, 18 months has come and gone and I'm not who I was in many ways. You will begin to discover this new person you will need to get to know.

When my doctor told me this it absolutely devastated me! I really did think I'd get back to my old life. I am accepting it more that I may never be that old me, but part of that life I absolutely want back. I particularly want back my Sporty Spice part. That's my main focus because my running feeds my soul and my doctor supports it. In fact, it is part of my prescription. She encourages all of her patients to run and lift weights as part of their self care program. 

Welcome to the club that no one wants to be a part of, but all of us have been relieved to find. I had an unexplained SAH in Jan 2012 and am still recovering. Much like yours bad headache, three weeks in the hospital, and then "Take it easy for a few weeks, then go ahead and go back to your normal life. Headache? That should be gone in 4-6 weeks." We are now...hmmm....148 weeks and 5 days later (not that I'm counting) and I still have a headache.

If I hadn't found this site I don't know if I'd still be here because I am not sure I'd have been able to handle what was happening to me with as much humor and class as everyone here has. See I was healthy, physically active, and took (take) exceptional care of myself. I did everything to try to ensure I wasn't going to deal with any lifestyle related illnesses. I had lost 100 pounds in 2002 and there was NOTHING that was going to drag me back into living a sedentary lifestyle ever again.

So when I got out of the hospital with just "go back to life" that's completely what I expected, that I could go back to my life exactly as it had been before I left. I planned to return to work the next week (I got out on a Thursday). I returned to my coaching duties as a marathon coach that weekend using a walker. I did not cancel any of my upcoming races (although I had to cancel most of them, but I did complete a half marathon in June using the walker). Needless to say when I did not return immediately to my normal life I was one P-Oed girl! Learning that what I was experiencing was normal helped SO much. At first I was very happy, just felt lucky to be alive, like the world was my oyster.

Since then the limitations sometimes get me way way down. I am not as limited as I could be so for that I am thankful. I am back to running and it is the only time that I am almost always without pain. I am back to coaching, although my time is slower, I can still cheer and motivate. My dogs get out running with me a few times a week, which we all enjoy. It's just that work is trying to kill me (I'm a full time teacher) and I'm considering disability or half time at the very least. I love my kids so it is a tough decision to make. 

My advice: Rest as much as you can. Do NOT go back to work too early. I mean it. I did and ended up having to take two more weeks off, then go half time. Now each year I use all my sick leave and go into unpaid leave. My health is more important, though. Don't try to be Superman. You will look healed on the outside but people will not understand that on the inside you have at least a full year of healing to do, if not much more. You may feel great tomorrow, that does not mean you should go out and try to conquer the world. It means you should enjoy it, do a BIT more, but save some in the tank for the next day or it might put you into bed three days following.

Be thankful and happy when you're feeling blessed and thankful and happy, but it's okay to be down and to feel that way because there is no way that this doesn't suck at times. It's okay to say that out loud and it's okay to feel mad, just don't wallow in it. We've all vented on here and I promise (or at least hope) that none of us will give you the "But you're lucky to be alive" line because you know that. We all know we're lucky to be alive but there is nothing lucky feeling about getting up, managing to brush our teeth and take a wee and put on half our clothes and then be ready to get back in bed for the day! 

Go stand in front of the mirror and practice this word, "No." "No, I'm sorry, I can't." "I'd love to, but I simply can't." "I'm sorry but I can't." 

You're going to need those phrases a lot because your old noggin will not let you do some of the things you would have said yes to without hesitation in the past. Bites the big one, but it's true. Knowing that in advance prepares you. Much like the family vacation where you had already committed, there are things you might not be able to get out of but at least if you can't, go knowing that you need to be rested and not expend too much energy.

I'm not saying you're made of glass. It's not that. In fact one thing I have noticed is that physically I can do nearly as much as I used to do, but mentally things exhaust me more. We just had a four day weekend in the states for Thanksgiving and I ran a marathon and two half marathons. Two of the days I had a bad headache, the third I did not once I was about 45 minutes into the run. That did not wear me out as much as today at work did because of the mental and emotional interaction with my Nerd Herd (I teach IT). I will go home and get out for a run and that will help for this evening to keep me from truthfully wanting to go straight away to bed, plus it will clear my head some. It's very cold today, and clear, which makes for good running weather for my head. 

Now granted the Thanksgiving before my SAH I ran all four days, four marathons for a total of over 108 miles and came out feeling great and I'm just not there right now, but I will be back there if it KILLS me! But for now, I am not advising any marathons for you!

I sleep at an angle every night due to lower back issues and I haven't found it to be a benefit at all to my headaches. Of course by now the blood in the CSF would be gone. You'd also have to know how the CSF and blood interact. Is the blood heavier than the CSF so does sleeping at an angle cause it to move downwards? That's an assumption, not a known. I'm not sure, but for me standing tends to make the pain dramatically worse. Sometimes I'll think I'm feeling much better in my prone position and then get up and "Nope..." as soon as I stand, the brain pain returns.

In short, I guess what I'm trying to say is your hypothesis is interesting but we all have different experiences. It might be worth a try, but just sharing that in my situation it hasn't been a benefit to sleep at an angle. I sleep  in almost a sitting up position and have for years because that, along with good exercise, has almost completely alleviated lower back pain.

I had a bear of a time sleeping when I first got out, even though I was always so tired. I did fall asleep a lot during the day but never for very long. When I was put on Amitryptiline that ended the issue, but that medication didn't work for me. The sleep was too groggy, too. It wasn't refreshing sleep. Now I'm only on 25 mg of Amitryptiline (thank God because it made me gain a lot of weight that I couldn't lose no matter how hard I tried, and I honestly tried) and my doctor also put me on Melatonin and that helps. You might ask your doctor about something like that. It doesn't make me groggy in the morning, which is good since I have my students. I also need to be able to get up and take the dogs out without walking into walls at night and I'm able to do that.

At this point, though, try to not stress as much as possible. Just let your body do its thing because its going to whether you stress about it or not. Stress will only wear you out and slow down your recovery. For me, it also made (and still does make) my head hurt worse when I stressed or got emotional. 

Welcome to the club you never wanted to join! At least you're in good company!

That's the scary part--getting turned down. I have to be off the job for 60 days before I can apply and then, from what I understand, I will probably be turned down. I read horror stories on the Internet and think "Maybe I shouldn't even do this" and then I come to work ready for the day and within an hour I'm dizzy, my head is swimming, and I'm in pain and I think "This is getting worse every year." I just don't know how to keep going but I just do. I don't hate my job by any means. I actually love it. I love my kids. I enjoy interacting with them. I'd love to find a way to keep doing it without having to leave. 

Last time I went to my Neurologist she gave me a hug and told me how proud she is of me that I keep on working and don't just give up. On the one hand I appreciated that. On the other it puts pressure on. Some days I just want to give up but then I'm no longer the go getter. I miss that. I love being the go getter who can do it all! 

Maybe I'll feel different once the weather changes. This has, I'll be honest, been an incredibly difficult Fall. Normally my base headache is about a 2-3 all the time with a few bad days per week, but not "shoot me in the head for relief" bad. Since October it's been more base 4-5 so I'm just kind of "getting along" more than "living with a headache" It's way worse than last year.

I'm ready to close my business and just give up on that, but then I'm afraid if I do and I do go out on disability I'll need it. But then if I go out on disability I worry I'll be doing it (exercise alleviates, doesn't exacerbate my pain and the doctor can attest to that) and they'll see me doing it and decide I'm lying. 

I don't know. Maybe it's not worth it. Lots to think about and even thinking about it is hard. Gosh life was so much easier before that stupid headache! LOL!

I had not had any headaches to speak of before the Big Bang, and since then I rarely have more than mere moments without them. 

It's been almost three years and I do believe I have given returning to work as a teacher full time the old college try, but I'm ready to wave the white flag. The problem is, I can't actually just quit. I did buy a Long Term Disability insurance (searches for word...loading...loading...I got nothing) THING two years ago when our union changed insurance.

Unfortunately it's so scary to do that. What if I leave my job and it turns out I'm turned down? It pays 60% of my pay, which we can get by on (with Roy's full time pay) but not if we're turned down. If I give up my job I can't just go out 90 days into the school year and get another job. I can substitute teach but that won't make up enough of my pay, and I'd have to work full time which defeats the purpose of my taking off.

Just typing it out makes me nauseous. If I give up this job, which I do love, and I have to go back to teaching I couldn't do a regular teaching job.I currently teach two half-day classes. I can apply for online classes, I guess (online teaching) which I think is doable because the main thing I find exhausting is the not having the latitude to take breaks and having to be "on" for 7 hours straight with just one break. 

Unfortunately I have applied a number of times and have not been hired, but that doesn't mean I won't keep trying. 

Has anyone dealt with LTD insurance that is NOT the government based insurance? I will meet the guidelines of having paid in for two years and having been under doctors treatment during that entire time. I just worry they won't believe me.

A friend did ask if I felt like I was "letting the headaches win" and in a way I do feel that way, but I truly have done everything the doctor ordered. I am in pain all of the time and there is always at least one day a week that I need to spend in bed. Some days I drag in anyhow and spend the day just feeling horrible and trying not to let anyone see it, then go home and go straight to bed. Other days I just can't do it. I'm just so over this and ready to move on.

You may  never get a reason, Shaw. I did a stress test on Monday and I ended it at 16 minutes only because I had another appointment but I really REALLY wanted to go for the record and break it (21 minutes). The doctor told me I had the cardiovascular system of a 20 year old at level 5 and I finished level 6. Why did I, at the age of 46, a marathon runner who lived an extremely happy, low stress (although very busy) lifestyle, who takes exceptional care of herself have a subarachnoid hemorrhage? Because, according to my neurosurgeon "Sometimes these things just happen and we don't know why." Why, three years later, do I still have ongoing excruciating headaches? I don't know. I do everything right. I follow ALL doctors orders. 

I am at peace, at this point, with not knowing. It is what it is and if we dwell too much on the why, it doesn't allow us to move forward. I know it didn't allow me to for a long time. I'm now facing that this is my life now and I'm ready to make some changes, thanks in no small part to April and some of the others on this board. We are where we are and we don't have to give up living a wonderful, amazing life because of our issues. We just have to form a different amazing and wonderful life.

I think different things will work for different people, although I am SO ready to try April's way. I have not had a day without a headache since Jan 28 2012. (I think that was the day.) I know I say very hydrated, try to make sure to eat regularly. I take all the medications and supplements my doctor (Neurologist with a specialty in headaches) tells me to. I exercise regularly both cardio and strength (again, doctor prescribed) although I can't on bad head days. I do not go to anaerobic levels because that raises my heart rate too high and I can pass out. It also spikes my headache so bad that I'll be in bed the rest of the day so running a race is fine but racing a race is out. Boo!

I, personally, cannot do yoga. If I go upside down it hurts too much. However, I can do SOME yoga for stretching and the like. I am also one who can't quiet my brain, never could. I always found yoga way too stressful, however running is an activity that calms me like nothing else. I can be hopping mad (or could, BS--before SAH), go out for a run and completely forget what I am so mad about within the first two miles. I even remember times TRYING to stay mad at my husband so I could give him what-for when I got home from the run. But I'd get home and not remember what I was mad about when I left!

At any rate, depending on the cause of the headaches, it is really hard to tell what will help them. Some days mine are bearable. I can teach, run, go teach bootcamp, and come home and write newsletters and watch TV with the family (which consists of husband and six dogs. Other days, like yesterday, I spend the entire day in bed with said six dogs wishing death. With me, my neuro believes the pain neurons were overly excited to the point that they are still just firing off like they're on a bender and it's Friday night in Dodge city! So I just keep trying new things, but I'm almost to the point where disability is becoming a reality.

Oh Honey, taking your son to school will be asking WAY too much of your brain. The input of the traffic, the decisions you will have to make, the lights, the sounds...just don't do it. We all wanted to just get back to life immediately but the brain has a mind of its own both literally and figuratively. 

You have suffered a traumatic brain injury. You must remember that and you must act accordingly.

Oh my goodness I could write that post 100 times over! I'm a high school teacher and a personal trainer and running coach. I cut the one on one training out of my business because I can't do it. I multitasked like a boss before, now I can stand in front of my kids and lose words that I used to know so well. I fail them on a daily basis, and yet they forgive (my kids=my students). I work late almost every night. This year I took on another position preparing and managing iPads for Assistive Technology and I just want to cry, yet I know I'm the best person for the job because I'm good at it. I'm also the IT person on my staff and manage the student techs. In addition I took on the CyberPatriot Program so my students can compete nationally in cyber-security.

In short...a lot of us are like you, still trying to live like we did before and feeling like we fall short. We have to learn to forgive ourselves because we are not the same people. Today during lecture I lost so many words it wasn't funny because the barometer is rising. (I had my SAH almost 3 years ago and have had a nonstop headache since then that spikes with pressure changes, up or down.) I'm in a lot of pain and thinking is hard. 

Macca is so right. We need to be kind to ourselves and we need to stop asking so much and stop feeling guilty. I'm starting to consider looking into disability (I have LTD insurance.) I don't know how we'll do financially as it will pay 60% of my current pay, only, but I also don't know how I can keep this pace with the constant headaches and missing an average of 3 days of work per month, and wanting to miss many more (working in great pain).

I hear you. Mine was in Jan 2011 and I still have a daily chronic headache. Sometimes it is so bad it puts me to bed (Monday was such a day). Other times, like today, it's so light as to barely bother me. The only time it ever goes away is when I am running so I am fortunate that I can run again and have actually resumed marathon running. In fact, even on a pretty bad (not a BAD, but a pretty bad) day I can go out for a run hoping to reduce the pain. I have a desire to take a one year sabbatical and run at least 13 to 26 miles a day to see if I can disrupt the neuropathic pain patterns, since no drug has been successful in doing so to this point. 

I hate statistics because doctors who have never had an SAH write them. I heard a scary stat when I was in the hospital that only 15% of survivors lead a normal life after an SAH and I was bound and determined I WAS going to be one of those 15%. Well if anyone looked at me they would think I was one of them. I'm not. I have pain all the time and some days I can't get out of bed. I'm a teacher and some days I am super-teacher, and other days I look at my kids like "Okay, what? Who are you again? Say that again?"

Even simple sentences might be hard to get out and I have to go home and sleep before I can move on with my day or evening. I run a small business as a Fitness Coach and Trainer and I've dropped all personal one-on-one clients and teach only running groups and bootcamps because I can get them started and go home or ask an unpaid partner (who gets free training and my undying gratitude-heh, no pun intended) to take bootcamps. So my business has gone from growing to losing money. 

My doctor told me that in four weeks my headaches would be gone, and to rest for 4-6 weeks and then resume my normal life.  When that didn't happen I felt betrayed. My husband also felt betrayed. I finally had to tell him "My doctor only TREATS brain hemorrhages, she has never HAD one so while she can tell me that things should be fine, she cannot tell me how I feel. Only I know that."

One of the blessings to my life now is that I can't get angry (makes my brain hurt too much) and I can no longer get involved in other people's drama. One of your blessings is that you understand what it's like when a patient's recovery doesn't go for him or her as planned. The empathy for others with chronic pain, also, is HUGE now. I guess I'd rather not have the pain but I'm starting to have peace with it and the gifts that came with it and living my life around it, and my new neurologists still tell me that it will stop someday and I believe them!

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. 

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.