New to this forum - looking for answers

[SteveK]

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.

[Daffodil]

Hiya Steve. Hiking guide sounds like it would be a peaceful job , I think I'm envious. Glad you are doing well apart from the headaches.

I have developed a theory on the headaches and it's just a theory ! I have no medical back up at all. Quite a few patients who have a bleed also have hydrocephalus, I'm one of those folks. Basically the ventricles go aaaaah! Blood! Shut down, shut down! Then the head starts over filling with CSF. It's quite common with SAH or head injury.

Now in my case there was damage which meant my ventricles never rebooted enough to do their job properly so I ended up needing a shunt to manage the CSF pressure.

Here comes my theory. That your lovely ventricles whilst they did a great job of dispersing all the blood over time they might not work as smartly as they used to. I think this might mean theyre slower to recycle the daily CSF level and more sensitive to pressure changes .

My friend has a head injury and gets headaches and we think that could be a plausible reason for why she gets them. Also if my CSF pressure is too high or too low then my BP spikes as well. I learnt all this before I had the shunt placed and had an external drain and then a lumber puncture and became versed in spotting my own signs of pressure.

I keep an eye on air pressure daily because I am learning that if it's very low or very high it affects my shunt pressure and creates worse headaches. I just think it possibly could do the same in someone's fully working yet ever so slightly contaminated ventricles.

Like you I like to understand stuff; i drive my doctors nuts with all these questions. I hoping Kris or Vanessa read your question as they actually understand this stuff and will give a better answer. my theory is probably complete rubbish but thats ok

Daff

[SteveK]

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

[MaryB]

Steve,

Welcome to BTG!

Several on here have had a NASAH Unknown cause & mine healed “itself” as well. I am accepting that it will not happen again. I have studied my scans and reports as well as even making a diagram with cut outs of what the reports say so I can better understand them. I needed to cut and paste literally to see the whole picture and try to understand it. For me I get they do not know why & can say they are 99.9% sure it won’t happen again but I needed to read and study my reports to understand the damage and learn about what happened to my brain.

There is so much they do not understand. How bad are your headaches? I had mine for the first 6 months, they suddenly stopped and now are back again daily. I know they say it is because I over do and I have a full time job of about 35 hours a week in a noisy small animal clinic. I am trying to see a pattern the past 6 weeks really try to track why I am getting them as I get them on my day, when I work, if I sit all day and do nothing or work myself to the bone. It does not seem to matter.

Drink plenty of water, eat healthy and rest when needed. I think we all need to be part of a big research project with spas, healthy meals, yoga, peaceful walks and meditation daily!! If life was stress free and everyday you could devote all the time you needed or had the energy you needed to devote that time to our recovery. Wonder what the outcome would be? Kind of like SAH Rehab a new Realist Reality show perhaps?

My thoughts ~ Good Luck, maryb

[goldfish.girl]

Hi Steve,

I'm another one who likes to know why something happens, not just being told that it does.

I have had constant headaches & head pains since my SAH 4 years ago. The headaches build as the day goes on, they are worse if I have to concentrate too hard or I am upset or angry etc. The random stabbing pains (as you said like a ice pick to the head) are the ones that worry me most. However, they have happened for so long now that I have to trust they are not a bad sign that something will happen again.

Sadly, there seems to be a lack of knowledge or research to explain these things and often we are dismissed in our quests for help to understand the pain or deal effectively with it. I have even been told that it may be 'learned behaviour' After 38 years of not 'learning' to be in pain, I am pretty sure I could've un-learned it over 4 short years!!

The only pain that really frightens me now is the specific pain behind my left eye where the burst anni was when I have a cold/cough or sneeze hard. I know that at these times I am feeling the pain of pressure on the area where the bleed was. I am hoping that one day doctors will learn my behaviour as well as I have and accept that these things happen & also know when it is a worrying problem & when it is an unexplained happening.

Good luck with your further research!

Michelle

[MaryB]

I have a tender head, right side temple and eye, and back of head- so tender the pillow is not soft enough. If I continue to over do it I will get that ice pick pain. I just recently after really bright sunshine hit my left eye was left with 3 days left eye painful headache. That was new to me as my pain has always been on the right side not left.

I do not really think anything horrible is going to happen but if I started to vomit and the headache was like the first time I would freak. But so far that has not happened so I am going with it never will happen.

[Winb143]

When I reply to threads I feel like a character out of Fools and Horses ..Yes Uncle Albert as he always says "Durin the war"

and having my SAH was like being in a battle, I've always had headaches and durin these headaches .(joke) I used to ask my

Husband to hold my neck as I thought I was going to die in my sleep.

When I eventually had my SAH I also got ventriculitus and sepsis, so it was pretty bad. I also cannot walk very far

I have 2 drill holes in head and my head still aches but nothing a paracetamol cannot cure.

I find being happy and singing helps, I am so glad to be alive that I cannot let SAH beat me. I don't make a lot of sense..lol but

keep bright it all helps . Hope head feels well xx

Good luck

WinB143 xx

[SteveK]

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.

[SteveK]

WinB143

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

[MaryB]

Well after 14 months I am in a new world of "What is up with this???" I am getting it checked out next week. I think it is from doing too much but what the "heck". Really???? I am going backwards. I know no one will have any answers unless I get another MRI but I am do for one the first of next year. I am sure it will be normal but I need someone to tell me how far to push it!

Mary

[kpaggett]

Pain was never my area of expertise, and it is very poorly understood. What I do know is that some people who have big injuries have little pain while others appear to have nothing wrong have extraordinary pains.

My best advise is to go to a headache specialist. A general practitioner is not equipped for this type of headache. Since there is very little research on this and NASAH, I think a headache specialist is the way to go, but you could also try a neurologist.

I hope you can find some relief from these headaches. Oh and nausea is quite common with headache.

And just because our doctors could not find a cause, there was one, but we'll never know. Since the stats are on our side, I worry very little about it...and that's in spite of wising I could know the cause as well. My scans showed me where the hemorrhage occurred and the extent, but did not reveal why. I was very healthy before my SAH, so I'm going to keep on doing that. I used to care, but now I just accept that I'll never know.

~Kris

[SteveK]

Pain was never my area of expertise, and it is very poorly understood. What I do know is that some people who have big injuries have little pain while others appear to have nothing wrong have extraordinary pains.

My best advise is to go to a headache specialist. A general practitioner is not equipped for this type of headache. Since there is very little research on this and NASAH, I think a headache specialist is the way to go, but you could also try a neurologist.

I hope you can find some relief from these headaches. Oh and nausea is quite common with headache.

And just because our doctors could not find a cause, there was one, but we'll never know. Since the stats are on our side, I worry very little about it...and that's in spite of wising I could know the cause as well. My scans showed me where the hemorrhage occurred and the extent, but did not reveal why. I was very healthy before my SAH, so I'm going to keep on doing that. I used to care, but now I just accept that I'll never know.

~Kris

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

[Louise]

Hi Steve, welcome

I was like you but decided life was way to short to wonder 'why' 'how come' & why me'

You said it yourself -

science just doesn't know enough about the brain to explain it all.

My only advice would be dont let it eat away at you because it can, maybe you need to speak with someone like a counsellor, Headway is very good...

sorry not a lot of help take care.