Teechur

Oh Sweetie! I thought the same thing. I'm special. Mine isn't bad. It's just a little bleed. What am I whining about? That was underscored by tons of friends thinking that they were helping. "You're a fighter! You are so strong!" I appreciated it, but it also put pressure on me to "get better now". After all, I've overcome a lot in my life and I always bounce back! Well this girl tried the bouncing back, and then said "Okay God. Tell me what I'm supposed to do." I went back to work a week after getting out of the hospital as a full time teacher, and went right back to running my small business as a weight loss coach, personal trainer, and running coach. I tried to get right back into fitness, but at the level I was trying I would backslide. Finally my physical therapist said "Your brain will only bounce back so many times before you end up with permanent brain damage". That scared me straight. I saw another doctor who immediately pulled me back out of work. I rested and relaxed. I had people take over my training classes. I cancelled all of my summer classes (that had me teaching 2-3 fitness classes per day). Your brain bled. You are still dealing with that effect. For me it felt like I got a lot worse before I got better. I needed naps daily, and still, 14 months later I am dealing with excruciating headaches. I understand that I'm still healing and I need to take time off. Unfortunately I'm out of sick leave for the school year so I suffer at work. It is what it is. Some days I go home early and am in bed by 3:00. Other days I feel great and can workout with a client and then go for a five mile run. (Today is a horrible day, but yesterday was a great day where I did a hard core strength routine with a client and then ran 5 miles with two others.) I just try to take it a day at a time. Sounds like kids are wandering in and lunch is over in one minute. Take care and just let your body heal.

OH and I'll add that I have found ice helps my head a LOT! I have this ice cap I wear, and right now (I'm at work but due to snow I have no kids right now and it's almost lunch time) I am leaning back on an ice pack. It really does help, although it's only temporary.

Have you tried wearing sunglasses indoors? I do that all the time at work and sometimes I get teased, but I don't care. The fluorescent lights KILL my head. I do have a dimmer, but even with them dimmed as low as they go, if my head is hurting it kills me. As for your cow-orker how dare he tell you to stop talking about it! I know that we may get "old" at times, but darn it you are living with a chronic condition that can change day to day. I have headaches every day, usually ALL day, with 3 or more "bad" headaches per week. Anyone who doesn't like it is going to get a kick right be...well. Ahem. Be a lady, Tory.

I really like the ice cap I got from Amazon, and plan to order another one. My husband says I look like Magneto and offers me spoons to bend, but I don't care. It helps the pain. I'm at work right now, miserable, and wish I had one. I'm a teacher who teaches a half day program for students who want to start their careers in IT. We had snow today so late start so I'm here with no kids. My afternoon kids will be here in 45 minutes. I really just want to go home and go to bed. Do you notice any difference when the weather changes? I had my SAH in Jan of last year and weather changes KILL me still.

I'm so sorry, David. As you know I'm a teacher. I have the best teenagers in the WORLD in my class, but there are some days it is so hard. I am blessed that my kids understand that if I'm wearing sunglasses I am not feeling well and they support me. Great kids. So tired of this, though. I felt last year like I was so blessed to recover quickly and get back to work (although I never made a full week of teaching). Now this year I'm just frustrated and angry that I'm still dealing with these soul sucking headaches with tinnitus. It's snowing here today and my head is at about an 8. I want to go home (I had no morning students due to late start), but I am out of sick leave so going home would mean taking unpaid time off. Last week I was in the ER with head pain. I didn't think I was having another SAH I just wanted relief from the horrible headache I was having. Our changeable weather in Washington state is just what's trying to kill me this season. Summer I felt so good when we had a stretch of good weather with no changes. Winter was hard and spring is like looking into the depths of a den of hungry lions, and no way to stop moving closer to them. I've looked into disability, but no one is going to okay disability for chronic headaches related to SAH.

How very scary! I'm so glad you are okay. Anything since then?

Thanks for the support. I know I don't always post on this group, but I read quite often. Today is worse than yesterday so I'm in bed. Part of it is definitely new environment. I had interviews for next year's students and that meant meeting a lot of new people, so I think that's part of it. The weather has changed daily here too. If it will just choose a weather pattern and STAY THERE I will get some relief. Going off all my meds is not an option. I teach full time and am a personal trainer, so it's a HUGE blessing that I'm able to do that. However, that means I can't play around with seeing what happens if I go off meds. I am titrating down from one medication right now and trying another. It'll be the fourth or fifth headache medication that I've tried. I'm still on Amitryptiline, and then Verapamil was added to that. Now I'm titrating off Verapamil and will try Propanolol. If within a few weeks that doesn't help, then we're trying Botox injections. I guess we'll see where that takes me!

One year and one month and I'm still dealing with headaches and am so tired of it! I feel like I've tried everything legal. I was just put on another medication today; a beta-blocker to lower blood pressure, although I do already have low BP. It may or may not work because at this point we're all guessing. Is this an SAH problem or have I awoken migraines due to the SAH? I've had CT scans, MRIs, MRAs, Angiograms, and sonograms of my major blood vessels. I do have a secondary finding of Fibromuscular Dysplasia, but that isn't what is causing the pain because it's minor and I have great blood flow. Inside I look as healthy as a 20 year old; brain has no blemishes, all of my blood vessels are completely clear of plaque, my flow is only impacted in one small spot in the carotids, but that's compared to the rest of my body and when compared to the average 47 year old is normal. My blood pressure is low, I have a resting heartrate of about 45 (was 40, but I'm not as fit as I was pre-SAH). I've tried Topomax, Verapamil, and am still on Amitryptiline and now Proponolol (that just looks like it's laughing out loud at me). Next step is Botox. At this point, shoot with neurotoxins or elephant tranquilizers! I am very thankful to have most of my energy back and am back running. I did finish my first full marathon a week ago Sunday in less time than I expected, and feeling pretty good! I teach my bootcamp and running classes, and have added a weight loss class to the mix. It's just that I do this with the understanding for all involved that on any day I may have to call off and spend the day in bed wearing sunglasses. I have headaches all day every day that are light, and one to three headaches a week that are serious. Sunday we had tickets to see the play "War Horse" but I couldn't go. When my head is bad I can't handle bright lights or loud noises. Even now I'm home because I had a doctor's appointment, and am dealing with a nasty level 7 headache. Ideas? Anyone else deal with this? Any ideas? Any ideas about relieving the pain without pills (since I can't take pills during the day when I'm teaching and OTC pain medications don't help)? I feel like a broken record every day. My husband no longer asks me if I have a headache, just "How's your head?" because he knows that the answer is always "Yes, I have a headache." (A side effect is that my house is now infested with dogs. We took in two rescue dogs over the summer/fall because apparently I have lost the power to say "no" when someone presents a needy pet to me. I am now not allowed to even look at dogs because we have five...and I loves them all!) I worry sometimes about that statistic that only 15% of people completely recover with no impact on their life. I just assumed I'd be one of the 15% (because I'm 'special'). <said with tongue firmly in cheek>

There is something so clarifying about a serious health issue. I had my first one in 2003 when they found a pre-cancerous tumor in my pancreas on a wonderful fluke of luck (if you can call kidney boulders a fluke of luck). I spent all of 2003 dealing with that. As I was recovering after three surgeries, including a Whipple Procedure, my district went out on strike. Having been very close to knocking on heaven's door, though, I felt so free. I didn't worry, even though my husband and I worked the same district and we had no income and not a whole lot of savings. All that stuff didn't matter. I was alive. I had survived a failed enucleation, a Whipple (look it up if you're interested, it's called the Grandaddy of all Surgeries), a blocked bowel, and internal bleeding that took me right up to the door mat. That's all I cared about! I was alive with my husband and my dogs and my friends! The things I used to worry about were gone. Well THEY weren't gone, but I felt like if God could see my way out of that, he'd help us deal with the "longest teacher's strike in Washington state history", bills, etc. When this happened I really struggled to understand why. I still don't. I feel like my lesson back then was "Life is for living, don't miss a moment." It encouraged me to keep my body healthy (I had lost 100 pounds and hit goal literally 3 days before I found out about the tumor), to stay active, to not wait for but create memories. But the SAH, I'm still not sure about. I know it will come clear someday; maybe I'll help someone through something. Who knows? Maybe there is no lesson...but I think there is.

I am feeling almost human today. Good heavens I do not wish this illness on anyone! At least it's short (about 3 days). One year is a big milestone and while sometimes it feels like I'm treading water, in reality I have done a great deal of healing over the last year. Outside of headaches, all of the symptoms from the original bleed are gone and I am thankful to be alive. I would have liked to have celebrated with a little more than a bowl of lucky charms and almond milk...but maybe we will celebrate this weekend!

Thanks Sandi! So I celebrated today in bed, and not the good way. LOL. We have a HORRIBLE norovirus going around here and it finally got me. All day in bed with five dogs and a cat. I'm just starting to feel a little better and may even try food. All I've had so far is soda and pain pills for the headache. Good times!

Howdy gang! One year ago today I was blithely going along through life with no idea that it was going to change the next day. On January 28 my husband and I were in the lobby of a movie theater. I was talking with a friend and he walked up with the giant bathtub size Coke Zero and handed it to me. We started to walk in and suddenly it literally felt like someone had hit me in the back of the head. I stopped and said "Wow! My head hurts! Take this (handing him the soda), My head hurts!" I hadn't felt pain like that ever, but I still went to the movie theater. Thought I was going to throw up a few times, the light from the movie made me want to scream. He asked me if I wanted to go home and I thought "I can have a headache here, or a headache at home and he really wants to see the movie." Long story short, I spent three weeks in the hospital from a little brain bleed. I was in a lot of denial. I truly thought it was no big deal. A year later at times I feel like I've come SO far. At other times I feel like I haven't come far enough. However, I am no longer wobbly, can drive again, can think and read without pain. No more walker or cane, at all. I'm back to running again, but not quite at previous level. I'm back teaching bootcamps at previous level. All that I'm left with is ongoing headaches. I've seen two neurologists and a vascular specialist and there does not seem to be an answer for them. I do have Fibromuscular Dysplasia, but it's very light and non-consequential right now. (It's rare--causes the body to deposit nodules of muscle fibers in between the walls of arteries. I have it in my cranials, but nowhere else. It is not thought to be the cause of either the SAH or the headaches.) I'm going to seek a third opinion on the headaches (since the last doctor told me it was all due to my running and I need to stop as I am 'too old to run anyhow'. ) I really am frustrated with the ongoing headaches, but when I look back I am amazed at how far I've come. I feel blessed to be alive most of the time, and am thankful that life is almost back to normal. Impact of the SAH on other areas of my life? I lost a lot of business and made less than half what I made in previous years this year. I lost a lot of clients due to having to cancel classes. We added two dogs to our home. In June when I was really depressed over the issues I was still dealing with a new dog wiggled his way into our lives giving me something to focus on that wasn't dependent on my health. In November another one found his way into our home too. Our savings account is kaput, but our marriage is stronger. That's a good trade off! My husband has been so patient and supportive throughout this. I've made new friends, on here as well as locally. Just having others understand is HUGE! All in all I'm not yet to the point where I'm thankful to have had this experience, but I'm getting there.

Well I have yet to do a full marathon. However, over New Years I did two half marathons; one on the last day of the year and one on the first day of the year. I am registered for a 50k next weekend, but not sure I'm ready for that. I continue to suffer from horrible headaches. Today, for example, I planned a long run of 15-18 miles, but my head is bad so I spent the day in bed instead hoping to rest up enough to deal with it during work next week. I suspect it'll be a 25k next weekend, but then two weeks later I'll run a full marathon. I will get there! I am back teaching bootcamps two days a week, and running classes on Saturdays.

Amen to that!

This post makes me want to hug you and cry for you and for me all at the same time. Monday is my one year "bleed-a-versary" and I'm sitting here with yet another searing headache that no one can find answers to. I'm so so sorry you're still suffering. I sometimes feel like giving up on doctors, then I have a day so bad that I am in bed the moment I get home (I teach and I'm out of sick leave with three left through June so staying home isn't an option). Other days I feel almost "normal" and am so thankful! Over the summer I learned on an acquaintance ran a 50k on Sunday, had a major SAH on Monday and passed leaving behind two daughters and a wife. I had a lot of survivors guilt (we both are in a group called Marathon Maniacs). I don't have children just four dogs and a husband...no five dogs (good Lord...I can't even count). So unfair. So I try to remember, when I'm feeling despair over headaches to respect the memory of Pete and try to be thankful I'm alive. Don't get me wrong. I think we have the right to mourn our previous lives, but it's just what I do for me because I don't want to spend two or three days a week in a funk. Maybe there is a way you can pamper yourself. When I had to literally drag myself to work before summer (end of school year), I would stop at Starbucks on the way home every day and get a tart and an unsweetened green tea lemonade. It gave me something to look forward to on the days I was barely able to function, much less teach. God bless my amazing students who were (and still are, even the new group) so patient and adaptable.

I have seen a vascular specialist who is knowledgeable about FMD. He told me at my first appointment that it was highly likely that it was a misdiagnosis, since the condition is very rare. Friday I had a full body ultrasound. The good news is they did not find any evidence of FMD in my other arteries. No such luck on the misdiagnosis, though. It's there in my vertebral and carotid arteries. I see the doctor again on Monday to find out what it all means. I truly pray it is the answer to my headaches. The tech told me what she found and I'm so thankful that was allowed. I hate getting tests then having to wait! I am hoping that it's going to be a situation where I have to get scans once a year. It is not curable but in some situations it doesn't get any worse. Hope that will be the case!

Took me a long while to realize it too! I ran with a friend who came to visit me in the hospital and she shared with me how scared she was when she saw me. I was saying everything was fine, it was no big deal, but I was surrounded by machines and monitors and in CCU. I truly had NO idea what I was in for! A year out, just about, I have regained most of my life, but I had to take a lot more time off than I had planned. I am a full time high school teacher, and work an additional 8-20 hours a week as a personal trainer, bootcamp leader, and running coach. I had to step WAY back from that and am now building those hours back up again. The best thing you can do for yourself is give yourself the latitude you need to just heal. You will be back to normal faster if you do that. The best thing I did was take the entire summer off to listen to my body. As a teacher I was off already and I canceled all of my classes except my running classes. I supervised those on Saturdays so I had six days a week to rest and heal. I do still have to listen to my head as I get terrible headaches. But I ran 31 miles this week, and 14.5 miles today alone. I feel good about that because for a time I worried I wouldn't ever get back.

Congratulations! My anniversary is coming up on the 28th. I am looking forward to having this chapter way in the rear view mirror of life!

Hi Scoobs! I had my SAH about a year ago. I'm older than you, but like you extremely active. A "normal" weekend for me would be coaching my running group on a 15 mile run, and then Sunday running a marathon (26.2 miles). I taught bootcamp 2 nights a week, taught school 5 days a week, coached new runners on Saturday mornings, ran myself about 40-60 miles a week. I swam, biked, and had the 2012 goal to run a 100 miler race and complete at least three half Ironman competitions. So as you can imagine after having an SAH I was really chomping to get back into exercise. A lot of who I am I have defined by my activity level (personal trainer, ultra marathoner, "that crazy lady we see running everywhere"). In addition, a lot of my social life is running with others and it would be SO depressing seeing photos on FB from my friends at marathons I had registered for and had to give up. As of now I am almost all the way back to previous fitness level. I still deal with nasty headaches but energy and fitness capacity is back. Sometimes the headaches will go away with a run, other times that's not a good idea and I adjust accordingly. I will say though that I have found that I have a condition called Fibromuscular Dysplasia in my vertebral and carotid arteries and they might be why I have the headaches. (It was found on one of my angiograms, but was just revealed to me in December. I had scans that confirmed it on Friday.) You'll get there! I know how frustrating it is, BELIEVE ME, I feel you but you'll get it back. It may be slightly different, but I doubt it. I have a feeling you will not only come back, but your story will motivate so many others. My husband always jokes that when they make my lifetime movie, I'll be crossing a finish line. Last weekend I ran a 50k relay with another friend who had an SAH six months before me. Both of us are in the group Marathon Maniacs and both had hoped to do the whole 50k, but our heads had another idea. So we teamed up, she did 15 miles, I did 19 miles ('cause I got lost...shhh). We were team "Brain Explosion." Don't give up hope. Hers was MUCH worse than mine, but she was 29 when she had it. Your age is a benefit and you'll be back in business. I'm sure of it.

Are we sisters, Bev? This was my problem from DAY ONE. I literally thought I'd get out of the hospital, go right back to teaching full time, go right back to training for races. And even after I said I got it, I still didn't get it. Heck, I probably still don't get it! It all takes time to sink in, to heal, and about the time you really start to get it, others think you're fine and all those people who offered the help the first month, are now wondering why you're not helping THEM and are making it even harder. It's also not linear. It's not like you get a little better every day. You get a little better, then something else might crop up. Something you did fine last week, you may not be able to do this week. It is one day at a time, but if you judge your recovery from how you felt yesterday as opposed to today, it's very defeating. Rather you have to compare how you are doing today from three or four weeks ago.

Well according to the doctor the headaches like I have should have stopped by now. I did call the new neurologist on Thursday because I was freaking myself out. I could tell she hadn't talked to my original neurosurgeon because she said "I think she did not tell you because you don't need medicine for it." When I asked her what, if anything, should be done she said have an MRA in a year. I asked her about my activity level, since she'd brought it up...is it okay to keep running? She said "No. You need to stop running because you are getting to old for it anyhow. There are many ways to enjoy life so you need to find another, quieter way to enjoy life." Uh...medical opinion or personal opinion? So I asked if she felt the FMD might be causing the headaches and she said no, it's the running. Stop running and it will go away. Wow! Like I haven't tried that! That must be the WHOLE answer! I am not saying she doesn't know what she's talking about or that running isn't a good idea right now, I'm saying it sounded like she was grasping at straws and giving me a personal, not a medical opinion. Of course FMD is rare and I don't expect her to know it all, but is it too much to expect her to delve a little deeper? I even had to tell her that I wasn't going to do the deep tissue massage she referred me to because it's contra-indicated because the arteries with FMD can be weaker. I did find a doctor who works with FMD that is about an hour from me. That clinic is requesting my records, and I got a referral started from my GP. I am less panicky than I was last week. I am assuming that because my NS is supposed to be one of the best, there was not a lot of concern. That's why she didn't tell me. I just don't like all the up in the air-ness about it! It's been almost 11 months since my SAH and I'm so ready for this all to be over. I'm glad I know, I just want a more definitive answer. And, btw, I am not running until I talk to the vascular specialist. I agree that with the knowledge I have it's best to not do anything that might be a bad idea. I can't accept the "You're too old" business. Speaking of business...this is my BUSINESS. I am a running coach, I teach bootcamp, my job is to help others find their athletic potential and I pray that this won't be the end of that. Anyhow.

So as I've mentioned in the past, I have had really bad headaches since my SAH in January. I am on my third neurologist who is also a headache specialist. I saw her on Tuesday for the first time and she was reading my files while I was in the room. She said "Do you remember being told you have Fibromuscular dysplasia?" Uh. No. So she copied and pasted the notation from my angiogram. It said "Evidence of Fibromuscular Dysplasia in the internal carotid and vertebral arteries." The new neuro was honest that she knows very little about it, but would follow up with my original neurosurgeon and find out if it's a mistake or what. The ONLY thing she said to me was "Don't freak yourself out, but we may have to discuss your activity level." She did say that as far as she could recall, it could weaken the vessels. So of course I Googled it and freaked myself out. Anyone else have this diagnosis? Here's what I found: On a more clinical site it did refer to sentinal bleed resulting in "the worst headache in the patient's life" being related to an aneurism due to the condition. It also said that though it can be asymptomatic, the symptoms in the head can include: Chronic headaches (check) Diziness/Vertigo (check, upon standing but part may be due to medication and to my low BP) Neck stiffness (check) Tinnitus (check) Vision disturbances (when my headaches are bad I can have a hard time with light, the reaction of my vision moving between close and far away things, say from cell phone to across the room is VERY long) I'm pretty freaked out, and I'm also pretty angry. If it's an error (that's one thing new doc will find out) well damn! That's a big error. If it is NOT an error, holy cow why wasn't I informed of this?! At the VERY least I should have my other arteries checked. It would also explain the SAH, the ongoing headaches, etc. I just feel like my neurosurgeon felt it wasn't a big issue, but from EVERYTHING I find it is serious, there is no cure only treatment, and it can result in dissection or shearing of the arteries. I should never have deep muscle massage on my neck (I was referred for this by my new doc...I'm declining), go on roller coasters (sad), bungee jump (seriously, sad...something I've always wanted to do), no karate (sad, I planned to get back to it in January), skydiving (I've done that once, have wanted to do it again). I've requested access to all my medical records, so hopefully that will shed a little more light.

Oh sweet baby, how very very heartbreaking. I will keep that family in my prayers.

When you're ready, let me know! I coach people to marathons and I can give you the brain explosion discount! I just registered for a full marathon on Dec 15. That gives me one month to get ready and I'm close to being there.

That is fascinating Mary! I'm very thankful that I seem to have regained all of my cognitive abilities. When the headaches really hurt I am not able to think on my feet as fast, but I think that's more the pain because when I try to force it, it hurts worse. Have you tried the Elavil (Amitryptiline)? My neuro put me on that for my headaches and honestly, I don't think it works for me. I am going to see a new headache specialist and hopefully she will have some answers for me. Until Dec 6, though, I'm still on the Elavil. BTW, I didn't notice it did anything for my behavior, either. I think it was used as an anti-d but wasn't the most effective. You do have to be careful with it. When my doctor didn't call in my new dosage, I ran out and had only half my dose left and had withdrawals. Thank goodness I was able to get my pills that day. If you go off too fast you can have seizures. I was really scared about that! I teach and it would FREAK my kids out and they have already been through enough. They need me to be healthy and sassy!