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Hey everyone. So gald I found this forum. I had my PSAH (will have my 2nd angiogram tomorrow to see if an aneurysm shows up or not as the first was negative) on 7/18 after I came off of the field playing in a soccer game. After a CT, LP, CT angiography, angiogram, MRI, and MRV the docs diagnosed me with a perimesencephalic SAH. Doing fairly well, been home 5 days and taking it very easy. Headache is mild at best, but do have that "fuzzy" feeling in my head, some tinnitus, a "stopped up" feeling in my left ear (feels like I have a hangover and water in my ears). Moving quickly is not fun, but getting better. The worst pain I have now, which can be intense but brief, is a pain along my sacrum and both buttocks that is throbbing (and corresponds to a similar throbbing but mild in my head) that lasts for 5-10 seconds after I stand up from sitting or lying down. Anyone else have / had this? Hope my test tomorrow comes out well. Just found out from my GP yesterday that my first CT scan that they thought was negative actually showed the bleed in retrospect after the MRI/MRV results. Up until now the LP was thought to have been positive only due to the trauma of the test. I look forward to chatting and sharing with you all. Oh, I almost forgot - also have a lot of adverse nerve tension in both legs - can't raise them straight up, straighten out my knees when sitting, or bend over yet. And, last but not least, straining in the bathroom is met with the same sacral / buttock pain.

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hey ericy, i had a perimesencephalic SAH about a year ago. everything you are experienceing sounds normal. you'll find most people on here have similiar stories. is your next angiogram the catheter type or a CT angio ? The chance of them finding an aneurysm is very very small so dont worry about taking either test.

The good news is the long term prognosis of this type of bleed is excellent. The chance of it ever happending again is between 0 and less than 1%.

Take everything very slowly for the next few weeks and rest alot and relax alot.

The back pain will resolve over time, probably in the next 4-8 weeks. I found that short slow walks helped alot.

Remember though that recovery from these bleeds is a long term process so dont get discouraged if you have some set backs.

Good luck with everything.

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Hi Ericy,

Wow, that's a recent bleed. I'm amazed you're on-line already. Welcome to BTG.

I had my bleed a month before you, on June 17th. They sent me home from the hospital three days later on the 20th.

I spent a lot of time lying down the first two weeks, since my head ached so much and I couldn't move my neck much at all. As a result of that I had sacrum trouble. At least I thought it was because I was lying down so much (I was very active and had trouble sitting down pre-bleed). When I got up to go to the bathroom or change rooms, my sacrum would painfully sort of "catch" and I'd have to walk in a funny position that reminded me of my grandpa his last few years of life. That cleared up after a few weeks as I increased my activity.

Hmmm...I still can't bend over without almost toppling over, it makes my balance go all wonky.

I can however go for a walk most days.

I don't know where you are located, but here in Canada there seems to be a belief that one can/should start back to work several weeks post PMSAH. I'm getting the gist that there is a different approach in the UK. Sounds like things are very civilized over there.

Take time to heal Ericy. Listen to your body. Come here when you need to give yourself permission to not acheive what you did before.

Riane

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hey ericy, i had a perimesencephalic SAH about a year ago. everything you are experienceing sounds normal. you'll find most people on here have similiar stories. is your next angiogram the catheter type or a CT angio ? The chance of them finding an aneurysm is very very small so dont worry about taking either test.

The good news is the long term prognosis of this type of bleed is excellent. The chance of it ever happending again is between 0 and less than 1%.

Take everything very slowly for the next few weeks and rest alot and relax alot.

The back pain will resolve over time, probably in the next 4-8 weeks. I found that short slow walks helped alot.

Remember though that recovery from these bleeds is a long term process so dont get discouraged if you have some set backs.

Good luck with everything.

I have a catheter angiogram. Thanks for the reassurance.

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Hi Ericy,

Wow, that's a recent bleed. I'm amazed you're on-line already. Welcome to BTG.

I had my bleed a month before you, on June 17th. They sent me home from the hospital three days later on the 20th.

I spent a lot of time lying down the first two weeks, since my head ached so much and I couldn't move my neck much at all. As a result of that I had sacrum trouble. At least I thought it was because I was lying down so much (I was very active and had trouble sitting down pre-bleed). When I got up to go to the bathroom or change rooms, my sacrum would painfully sort of "catch" and I'd have to walk in a funny position that reminded me of my grandpa his last few years of life. That cleared up after a few weeks as I increased my activity.

Hmmm...I still can't bend over without almost toppling over, it makes my balance go all wonky.

I can however go for a walk most days.

I don't know where you are located, but here in Canada there seems to be a belief that one can/should start back to work several weeks post PMSAH. I'm getting the gist that there is a different approach in the UK. Sounds like things are very civilized over there.

Take time to heal Ericy. Listen to your body. Come here when you need to give yourself permission to not acheive what you did before.

Riane

Thanks Riane. I'm actually in North Carolina, USA. The doctors have basically just said to not strain, lift, work for 2 weeks and then slowly get back into activities with symptoms being my guide. Really hoping the angiogram tomorrow shows no aneurysm. I can see that this forum is going to be wonderfully supportive and reassuring. God's blessings to you.

Eric

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Hi and welcome to BTG!

I had a PM-NASAH in November last year. Like Rianne I thought my bum/back hurt from lying down or sleeping while sitting up (I would get dizzy if I laid flat) but I now know that what was really happening was the blood from the bleed was being absorbed through my spine. And wow could it hurt! Almost as bad as the head explosion. Mine lasted for a few weeks and since then off and on I've been battling a ball of fire in my upper back on my spine.

Surfer is right, all is normal but if you feel like something doesn't seem right don't hesitate to go to your doctor.

Sorry to hear you had a brain bleed but I'm glad you have found us so quickly. Anxiety over the unknown doesn't help recovery! Much better to 'talk' with people who have been there.

Sandi K.

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Welcome to BTG Eric.

You are doing well to post on here so soon after the event. Personally I didn't suffer the symptoms you mention, but I'm glad others have given you reassurance with this. I hope your angiogram goes well and I'll keep my fingers crossed that they don't find any aneursyms.

Take care,

Sarah

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Hi Ericy

Welcome to the site and the family.

Even though they didn't find an anuerysm on your first scan I'd still go for another just to make sure - its better to be safe than sorry.

Fingers crossed that all goes well.

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Hi Eric,

What part of North Carolina do you live in? I've been to Wilmington, and my sister and brother-in-law live in Carolina Shores. My mother-in-law lives in Myrtle Beach, SC. We try to get over there every year to visit her, but I don't know if we're going to make it this year. I live in British Columbia.

I was told pretty much the same thing as you when I was sent home from the hospital. I can't speak for your situation, but in mine I've discovered that it's total BS!

One thing that I've been wrestling with the past couple of weeks is wondering what's wrong with me that I'm not doing as well as they led me to believe I would be doing. Thank everything that is good I found my way here to find out that the only thing that's wrong with me is I had a PM-SAH and the North American expectations of pick yourself up and back to the grindstone is absolutely insane!

So, go easy on yourself. Yes, by all means listen to your body, it's going to have a whole lot to say to you in this journey. Throw out any ideas/expectations (from the medical community or from yourself) of when you will be "back to normal", grieve what you have lost so that you can eventually make room for whatever your new normal is going to be.

I've had some developments in my world in the past 24hrs, but I'll post them over on my intro thread.

Ciao for now.

Riane :-)

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Thanks guys, it realy does feel like a family here already and I can tell you are very supportive of one another. I thank God for finding you. Angiogram today was normal!! So I guess I am officially a NA PMSAH' er. Resting comfortably. Little more of an overall mild-mod headache today. Still with fuzzy, "clogged head" feeling. Tinnitus when it's quiet. Seems like my hearing is a bit off too, like I don't have a really keen sense of hearing; can't quite hear the rubbing of my fingers across my pants, things like that. But I feel blessed to have no neuro deficits and the pain is really controlled. A bit of anxiety about resuming exercise and things like that but I am determined to go slowly. I have a great wife and kids and tons of support from friends and family. I work as an orthopaedic manual physical therapist and generally have a pretty physical job so I am not planning on going back to work until 8/8. My bleed was on 7/18. Any thoughts?

Eric

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Hi Eric,

What part of North Carolina do you live in? I've been to Wilmington, and my sister and brother-in-law live in Carolina Shores. My mother-in-law lives in Myrtle Beach, SC. We try to get over there every year to visit her, but I don't know if we're going to make it this year. I live in British Columbia.

I was told pretty much the same thing as you when I was sent home from the hospital. I can't speak for your situation, but in mine I've discovered that it's total BS!

One thing that I've been wrestling with the past couple of weeks is wondering what's wrong with me that I'm not doing as well as they led me to believe I would be doing. Thank everything that is good I found my way here to find out that the only thing that's wrong with me is I had a PM-SAH and the North American expectations of pick yourself up and back to the grindstone is absolutely insane!

So, go easy on yourself. Yes, by all means listen to your body, it's going to have a whole lot to say to you in this journey. Throw out any ideas/expectations (from the medical community or from yourself) of when you will be "back to normal", grieve what you have lost so that you can eventually make room for whatever your new normal is going to be.

I've had some developments in my world in the past 24hrs, but I'll post them over on my intro thread.

Ciao for now.

Riane :-)

I am in the mountains of Western North Carolina. Thanks for your insight. I don't have any preconceived notions for sure. I have gotten more info from an article one of my best friends (he is a rheumatologist) gave me and from you all here. Take care of yourself, I look forward to our chats Riane.

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Hi, I'm glad to hear your angiogram went ok.

I had hearing issues for a couple of weeks after my bleed. I had super sensitive hearing. For months now loud noise has bothered me and I can't stand having the TV on when people are talking but the first couple of weeks was so sensitive that I could hear the plates touching each other in the kitchen cupboards. Perhaps the tinnitus is numbing your hearing and giving you the opposite effect? Hopefully it's temporary as mine was.

Go back into your normal routine very carefully. Be gentle with yourself. Imagine how you would treat a family member who had a sudden and serious health scare. Treat yourself as well, care for yourself. Everyone here told me to rest and not push myself too hard too fast. They were right.

Sandi K.

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Hi Eric! I'm so happy for you that you found this site so quickly!!! WOW - good for you! Sorry it's under these circumstances though.

I'm in Florida and it appears that the US medical professionals seem to know very little about the after effects of SAHs! Honestly, the folks I've corresonded with from US, have all been told pretty much the same thing. Rest for a few weeks, drink lots of water and then resume normal activities as tolerated. I was told no driving, working, strenuous activity for 1 month, maybe more. I had expectations of going back to work at that 1 month mark. Spoke with neurologist who told me to go ahead if I felt comfortable with it and play it by ear. I wanted to get back to work (Lic. Massage Therapist) and went back at about 6 weeks. Started out very slowly - a couple days a week for only a few hours at a time. Over the next 2 months, I gradually increased the days and hours. Much to my dismay, I was having migraine headaches - almost daily, extreme fatigue - I would come home completely spent and sleep 3+ hours afterward, with little energy later to do anything. Constantly being bent over while doing massage and exerting pressure, would cause my head to throb and become full feeling along with ringing in my ears and sensitive to noise and distractions of machines beeping, etc... I became very depressed about how my body was reacting to all this, not to mention the extreme fatigue. I kept at it for almost 2 months. Then, our receptionist was fired and I offered to take that position, knowing the physical aspect of massage was not working for me. The reception work did ease some of the headaches, but I found it very taxing to multitask, constantly having to think ahead, and was easily distracted by the constant noise and disruptions. Headaches and fatigue kicked in again. I continued on for another 6 months, when the owner of the company decided to eliminate my position, saying she had to make cutbacks! So I was then laid off. SORRY to have gone on with all this.

I am certainly not wanting to discourage you in any way, just sharing my experience and that for me - I went back too soon with expectations that, unknown to me at the time, were simply unrealistic. We all heal at different rates and there are many on this site who've been able to resume their previous work, athletic activities and have gone on to make astounding recoveries! Hopefully you will be one of those people :biggrin:

Being there is little to no after care here in the US, read as much as possible, surround yourself with positive, caring people, and above all, listen to your body and what it's telling you. There is a wonderful post (somewhere on the website? somebody help with location please :roll:) called A Letter to Your Brain. It's beautifully written and helped me to understand a little more about what the brain has gone through and how we should care for ourselves.

Ok, I 've rambled on for some time here:shock: (always got in trouble at school for talking too much!). Congratulations on the clear scan for no anni! Do take care Eric, and wishing you a speedy recovery. Look forward to hearing more from you as time goes on!

Hugs to you my fellow American,

Carolyn

PS: Love the mountains in NC, beautiful country :biggrin:

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Hi, I'm glad to hear your angiogram went ok.

I had hearing issues for a couple of weeks after my bleed. I had super sensitive hearing. For months now loud noise has bothered me and I can't stand having the TV on when people are talking but the first couple of weeks was so sensitive that I could hear the plates touching each other in the kitchen cupboards. Perhaps the tinnitus is numbing your hearing and giving you the opposite effect? Hopefully it's temporary as mine was.

Go back into your normal routine very carefully. Be gentle with yourself. Imagine how you would treat a family member who had a sudden and serious health scare. Treat yourself as well, care for yourself. Everyone here told me to rest and not push myself too hard too fast. They were right.

Sandi K.

Sandi:

That's the strange part, I DO have that same level of intolerance / sensitivity to loud noise (sometimes tough with 4 daughters!) in addition to the inability to hear really faint sounds. Crazy, huh. My wife and I are quickly realizing that there are no specifics from the doctors in terms of return to activity and it seems like "listen to your body" is the best advice. Of course, we are concerned with returning to work, exercise, sexual intimacy, yard work, etc. Nothing really concrete from the docs.

Eric

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Hi Eric! I'm so happy for you that you found this site so quickly!!! WOW - good for you! Sorry it's under these circumstances though.

I'm in Florida and it appears that the US medical professionals seem to know very little about the after effects of SAHs! Honestly, the folks I've corresonded with from US, have all been told pretty much the same thing. Rest for a few weeks, drink lots of water and then resume normal activities as tolerated. I was told no driving, working, strenuous activity for 1 month, maybe more. I had expectations of going back to work at that 1 month mark. Spoke with neurologist who told me to go ahead if I felt comfortable with it and play it by ear. I wanted to get back to work (Lic. Massage Therapist) and went back at about 6 weeks. Started out very slowly - a couple days a week for only a few hours at a time. Over the next 2 months, I gradually increased the days and hours. Much to my dismay, I was having migraine headaches - almost daily, extreme fatigue - I would come home completely spent and sleep 3+ hours afterward, with little energy later to do anything. Constantly being bent over while doing massage and exerting pressure, would cause my head to throb and become full feeling along with ringing in my ears and sensitive to noise and distractions of machines beeping, etc... I became very depressed about how my body was reacting to all this, not to mention the extreme fatigue. I kept at it for almost 2 months. Then, our receptionist was fired and I offered to take that position, knowing the physical aspect of massage was not working for me. The reception work did ease some of the headaches, but I found it very taxing to multitask, constantly having to think ahead, and was easily distracted by the constant noise and disruptions. Headaches and fatigue kicked in again. I continued on for another 6 months, when the owner of the company decided to eliminate my position, saying she had to make cutbacks! So I was then laid off. SORRY to have gone on with all this.

I am certainly not wanting to discourage you in any way, just sharing my experience and that for me - I went back too soon with expectations that, unknown to me at the time, were simply unrealistic. We all heal at different rates and there are many on this site who've been able to resume their previous work, athletic activities and have gone on to make astounding recoveries! Hopefully you will be one of those people :biggrin:

Being there is little to no after care here in the US, read as much as possible, surround yourself with positive, caring people, and above all, listen to your body and what it's telling you. There is a wonderful post (somewhere on the website? somebody help with location please :roll:) called A Letter to Your Brain. It's beautifully written and helped me to understand a little more about what the brain has gone through and how we should care for ourselves.

Ok, I 've rambled on for some time here:shock: (always got in trouble at school for talking too much!). Congratulations on the clear scan for no anni! Do take care Eric, and wishing you a speedy recovery. Look forward to hearing more from you as time goes on!

Hugs to you my fellow American,

Carolyn

PS: Love the mountains in NC, beautiful country :biggrin:

Thanks for the hugs and right back at ya! This sight is wonderful and is already proving to be a Godsend. I will look forward to the article you mentioned. I think that I previsouly stated I was an orthopaedic physical therapist (physio for all of my Canadian and UK friends :-D) and am a bit concerned about the physical nature of my job. Plus... Drum roll please......... I am the owner, so mulit-tasking in the extreme is my norm. I addition, I am the Grand Kinight of my Knights of Columbus council (just took over in early July), I am the race director of the Waynesville Main Street Mile (www.waynesvillemainstreetmile.com) charity road race (to be held on 8/12 :crazy:), and have 4 lovely daughters ages 8 mos, 2 years, 8 years, and 9 years. Stress had to play a role in my bleed, didn't it? Maybe it was just a freak occurrence? Too many questions....

Eric

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Hi Eric,

Man, can I identify with the high level of activity you had pre-bleed!

I have two daughters (ages 11 and 2 years); was volunteering (with 2 year old in tow) at our local elementary school which is in crisis and threatened with closure (took a min of 10 hrs per week of work at school or in meetings); worked at the local real estate office 3 days a week doing marketing, graphic design, website based work (extreme multi-tasking involving multiple web-browsers, with average of 8 tabs apiece), and keeping track of the details, details, details...of contracts etc for the Realtors, important dates, multiple pages to be faxed off and signed, submissions to lawyers, etc, etc; was building a very large cement sculpture with the kids at the local elementary school; was working on choreography for and performing in an upcoming show on September 2 and a different one November 11; came home and cooked dinner most nights; have a huuuge garden (that's going to weeds right now); and am a potter in my spare time.:lol:

I totally think/know that stress played a role in my bleed.

Pre-bleed I was saying for months that I was doing too much and had to slow down before life made me slow down. I had a bit of an emotional break-down about 3 weeks prior to my bleed and came out of it with the plan to go away, all by myself camping for 4 days and 3 nights.

As planned, I did just that. I camped in my van, beside the ocean. It was lovely, and quiet and peaceful. I had only myself to answer to and no-one asking anything of me. It was my first time alone in 3 years! I came home on the Wednesday night. And in the middle of the night on Thursday night...boom!

And now, everything has slowed down. I have hours and hours of alone time each day. My 2 year old is in daycare 5 days a week, and when she's home so is my husband. Frankly I just can't parent, and cook dinner, and arrange playdates, and deal with squables, and talk logistics with my husband all at the same time - like I used to.

Now, it's one thing at a time. The detail person that I used to be is gone (for now?) and has been replaced by slow going, one-thing-at-a-time, I better write it down so I remember - New Me.

But, again, that's my story. Yours is going to be different with, no doubt, some similarities along the way.

Good luck to you, your wife and your kids. It has definitely been hard on my family...but then they still have me which, I believe, makes the extra burden they (my hubby especially) have to bear. I think they would agree with me on that point.

Be well, and do drink the 3 litres of water each day that I read somewhere else on this site, what an amazing difference it has made in taking some of the pressure off my head.

Riane :-)

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Hi Eric

Welcome to the site - I don't appear to have said hi before...

Sorry to hear you have suffered SAH also, and it would seem from your posts that stress may have indeed played a part!! Wow, you and Riane sure know how to fill your lives :shocked: Did you find any time to sleep??...

I do hope you continue your recovery well and find a way to ease back into your work when you are able to.

I still try to ensure I have approximately 3 litres of water a day, and I switched to decaf teabags early on to limit caffeine/dehydration effects - it definitely has a major effect on wellbeing and reducing headaches

Take care

Kel x

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Hi Eric,

I know you have been told by others take it easy...but do as they say...... listen to your body.....plus if you do not

do as they tell you they will pounce on you..... lol J/K

Keep well and smile

Regards

WinB143 x

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