SteveK

Hello everyone. I posted for the first time about a week or so ago. I had my NASAH 3.5 years ago (no known cause) and have been doing fine except for short, stabbing headaches now and again, sometimes often (daily), sometimes a few times a week. They always scare the heck out of me even though they only last a few seconds, and they leave me pretty shaken (PTSD I suppose), but I continue on with my day and forget about it eventually. About 12 days ago I got a headache that is very persistent, along with a tight feeling in my head and nausea. The nausea isn't enough to keep me down but it most definitely slows me down. The headache is very steady, sometimes enough to wake me up at 3am in a panic. I had an MRI two days ago, my first since the original bleed. They found nothing. No hydrocephalus either. Though I'm not sure an MRI is the best test for hydrocephalus. I'm glad I got the MRI, it went a long way towards reducing my anxiety, I could have sworn I was having another bleed. But, the headache and nausea are still there. If I take 4 ibuprofen every 8 hours it keeps the pain at bay, but I don't want to keep taking so much. And the head tightness, pressure, and nausea are still there. Has anyone else had these symptoms, and for this long? Any idea why? I'm trying to think of some cause, a change in my activity level or something. I mentioned in a previous post that I'm very active, 70-mile road bike rides on a regular basis, etc., and I did a two-day 135-mile ride with 16,000' of climbing a few weeks ago. I felt fine during the ride. But I started having the symptoms a few days later. I of course thought maybe I pushed it too hard and started another slow bleed. Some people have posted that after pushing it too far they pay for it. If that's the case with me then this is the first time in 3.5 years that it's happened, which is why it scared me so much. My doctor 3.5 years ago said I could return to my normal activity level once I felt up to it. Maybe that was a mistake. Of course the headache and nausea could be from something else altogether. Sinus infection? (no congestion, though) Meningitis? (no stiff neck or fever). A two-week headache is pretty tough to take for people like us, it's hard not to think the worst. Thanks for reading this. Steve

Kris, Thanks for writing. And thanks for telling me nausea is common with these headaches. It's been over three years with occasional, sometimes frequent headaches, and I think I've done pretty good dealing with the PTSD moments that come up with the bad ones, but lately I've had a persistent headache with nausea and this is something new to me. I've been nauseous for almost a week now, with a headache that ebbs and flows but doesn't completely go away, it's not enough to keep me from functioning, but it's starting to scare me. I'm staying away from the hospital mostly because my neurologist from the original NASAH said not to worry unless the headache builds and doesn't stop. And from what I've read about shunts I guess I'm trying to avoid being told that I may need one. I don't want to jump to conclusions but I want to understand why after three years of carrying on without much difficulty I'm suddenly having these issues now. I've read that people sometimes feel they are going backwards, maybe I'm just starting one of those periodic slips backward, and it will pass soon. I am thankful for this forum and people like you. Finally there's someone I can talk to about this without worrying who I am going to affect. I'm home with family for Thanksgiving and I finally had to tell my brother what was going on and now that the rest of my family knows I can already sense that they are worried about me, something I wanted to avoid. Thanks again. Steve

WinB143 I like your attitude. Yes, laughing helps . . .

MaryB and Michelle, Thanks for the encouragement. I have been carrying on for the past 3 years as if nothing has happened to me. As I mentioned I occasionally have instantaneous splitting headaches (the quick stabbing kind) or sometimes a more dull, drawn out episode, usually accompanied by nausea. I'm not sure if the nausea is a result of the headache. I also have that weird head feeling that some people have mentioned, a bit dizzy, tight, a feeling of internal pressure, etc. I have felt pretty lucky, and thankful, to have been able to return to life as usual, I have been mountain biking, road biking, backcountry skiing, going to the gym, all the things I used to do, to the same intensity I used to do them. I work as a wilderness guide and am pretty much constantly exerting myself. So far it hasn't affected me. Until now. For the past several days I've actually been woken up early by a long lasting, medium level headache that has been persistent, plus the associated nausea. I'm still able to function, going about my life without anyone noticing a difference. But I notice a difference, the nausea, the constant background headache that rises and falls but never really goes away, and the nagging feeling that I should maybe go to the hospital and get things checked out. To be honest, though, I'm a bit afraid of finding out I have hydrocephalus or perhaps something else, and if my choices are to go through a potentially risky operation, or, just deal with what I'm feeling and bear it, hoping it will resolve itself eventually, I think I'd rather choose the wait and see solution. Some people have mentioned that they have similar episodes, and that they come and go. As long as I could convince myself that this will pass I think can deal with it. I have to say that I've never really had a prolonged headache that has lasted days, though, along with the weird tight head feeling and nausea, this seems to be something new. Once again, I can function just fine, but the feeling that I "should" maybe get checked out is nagging at me. I'm not asking if I should go to the hospital, I think I'll figure that out for myself based on how things go in the next few days. I guess I'm asking if anyone else out there has experienced this type of prolonged episode plus nausea. And did it pass on it's own. If this is common, I won't worry so much. It's nice to be able to air my concerns like this, to people who understand. Thank you.

Daff, Thanks for the theory, sounds plausible. I will do some more research into unbalanced CSF and what types of symptoms it can cause (and what I can do about it). Hope you are doing well, the shunt sounds scary. The CSF pressure/BP link is something I need to look into. I had high BP for most of my 56 years and only started treating it after my SAH, which of course probably led to the SAH in the first place. My BP is under control, more or less, but there are days I have to skip my dose because my BP goes so low, and I'm thinking that since my body has been used to such high pressure for most of my life that when it drops to a "normal" level, or below, I get dizzy, nauseous, "thick" in the head. All of this aside, it's good to be alive, and it somehow helps to know there are other folks out there dealing with similar issues. I am very uncomfortable talking to anyone close to me about this. Thanks again, Steve

Hello everyone. I had a non-aneurysmal SAH three years ago, I spent 10 days in the ICU. It took a long time to get my strength back but I so far have no lasting issues, except for the headaches, which I'll get to in a minute. The cause of the bleed was "unknown" and also "unknown" was how it repaired itself. Not sure about all of you, but this not knowing is the hardest thing for me about this experience. I feel the need to know what caused the SAH in the first place. Was it a deformity? Something that is likely to rupture again? I've read all the studies and I know that statistically these things are (generally) one time events. But, at 3 years out, I would really like to know why I continue to get random headaches - my doctor 3 years ago told me not to worry about headaches, unless I get one that builds with no relief, which of course would mean I'm having another event. Trouble is, every time I get a headache I am instantly transported back in time and place to the original bleed, and I find myself working out in my head how I'm going to get myself to a hospital. I work as a hiking guide and am out in the wilderness much of the time, getting to a hospital isn't always easy, or even possible. I know I had a brain bleed, and I know that when this happens it alters physiology, but I have yet to have someone tell me why I get these headaches. If I understood the physiology, the "why" of it, I would be better able to deal with the aftermath of the recurring headaches. Sometimes they are like an ice pick being driven into the center of my brain, and they last only seconds, other times there's a tightness, pressure, dull but constant pain, dizzy/foggy, associated mild nausea, and it lasts hours. The end result is always the same, though, I am left shell-shocked, I feel quite vulnerable, and I don't want to tell anyone close to me because I don't want them to worry or treat me like I'm a grenade about to go off. I don't like going to bed at night hoping I'll wake up in the morning, not knowing if I will. I'm guessing those of you who have had these know what I am talking about. Can anyone explain to me why we get these headaches? The physiology of it? I honestly think that if I knew the answer I would be better able to deal with the aftermath. The only answer I've gotten that makes some sense is that blood in the brain isn't absorbed over time, it turns into scar tissue. That could explain the pain, perhaps this scar tissue is affecting a related nerve. Maybe my CSF is out of whack, I had a lumbar drain while in the hospital, and maybe since I'm always moving between sea level (visiting parents), living at 7,200', and working up to 14,000', it somehow causes pressure problems. I also have hypertension, which I treat with medication, but my BP is all over the place, maybe as my BP fluctuates it wreaks havoc. I know it's not an easy question to answer. The attitude of some of the doctors I talked to after my event was - "you are here talking to me, you are fine, you should see most of my other patients, consider yourself lucky." Others have been more understanding, but they have told me that science just doesn't know enough about the brain to explain it all. Any insight would be appreciated. Thank you for reading all of this.