Hi...Riane...PM-NASAH June 17, 2011

[Riane]

Hello all, I am so happy to have found you here!

After an emotionally difficult day last Saturday I spent 45minutes searching google, looking for something other than medical reports on PM-NASAH. I was looking for support, I knew it must be out there, but it sure took some teary time to find it.

And, here you are. I am so relieved to not be alone on this journey.

My name is Riane, I am 42 years old. I live on Denman Island, a small island on the coast of British Columbia, in Canada. The resident population of Denman is 1500 people. That number increases by another 1000 in the summer as many people come here for the beauty and the laid-back experiences of nature. I am like most Denman Island residents in that I unabashedly admit to being somewhat of a hippie, and that I am an artist.

I live on Denman with my family which consists of my husband, my 11 year old daughter (her father also lives on Denman and we share custody), our 2 year old daughter and our dog.

As well as being a mother and wife, I am a dancer, dance teacher, sculptor, potter, singer, writer. I am also a gardener with a large garden from which we eat much of our own food. For money I work 3 days a week doing graphic design, on-line publicity, and web admin for a local real estate company. I volunteer weekly at the local elementary school and I am active in various community groups, including producing various shows.

At least, the above paragraph was true up until June 17th. Since then, my activity level has gone to nil, what I can do and the way I think of myself has changed. No doubt this is familiar to most here.

On the morning of Friday June 17th I was making love with my husband when I was hit with the most excruciating explosion of a headache, nausea and leg seizures. One of the local GP's came to our house and gave me a shot of morphine, thinking that I had a migrane (though I have never had one before) or a pinched nerve. Then he left. (One day when I am feeling stronger I will follow up with him and let him know how angry I am. Thank God my bleed wasn't an aneurysm).

A couple of hours later I told my husband to call the doctor again, there was something really wrong. Luckily there had been a shift change and the GP who was then on call knew right away what was going on with me.

By the time he saw me at home he was sure I was having a SAH. He sent me by ambulance to the local hospital where I had a CT scan which showed that I had had a SAH. I was then airlifted to Vancouver where I got my second CT scan. By then I was on quite a bit of morphine, the pain was easing and I was responding well to the questions that kept being repeated to me.

On Saturday morning I got an angiogram. On Sunday I was finally given the information that no aneurysm had been found. By that time I had already come to the realization that things were likely ok, due to the way the nurses in the ICU went from being very attentive to not having much time for me. I figured, rightly, that if it were an aneurysm there wouldn't have been a delay with getting information/treatment.

While being kept in the dark was annoying and scary for me, I also understood/stand why it was that way as I was able to see that many of the people around me in the ICU were in very dire straits, and the staff was busy with them. Also, it being the weekend, there were not many neurologists working.

On Monday I had a quick visit from the chief of the Neurology dept. who told me that other than having an interesting brain (apparently I have branches in my brain where none are expected, and no branches where they are expected) and the evidence of a bleed, there is nothing wrong with me. He told me he would like to see me after 3 months for a follow up angiogram just to be absolutely sure there is no aneurysm, and that's it. I was free to go and get back to my life. I could return to light duty at work after 2 weeks, and expect to be totally back to normal after 3 months.

I was given the choice of going home or being transferred to another ward for a couple of days. Since I am somewhat paranoid of all the germs in hospitals, I decided to go home.

I came home 5 weeks ago. My mother was here for the first two weeks to help around the house. My two year old goes to daycare 5 days a week. My husband is doing double duty as parent in the evenings and on weekends. My 11 year old has been having to take on more responsibilities around the house, but everytime she goes to her father's then comes back, we have to go through the process of getting her to remember that she can't make the same demands on Mom that she is used to doing.

I returned to office work on Saturday the 16th of July - one month after my "event", and two weeks after the doctors advised me to. I did a 6 hour shift. The first 3 hours were fine. The second 3 hours I worked with a wicked headache. The next day I was pretty toasted. I worked again on last Saturday - another 6 hour shift. No headache...hooray! But, I was very "hungover" yesterday.

In consultation with my hubby, we have decided I should cut my shift back to 4 hours, and stay at one day a week for now. The work that I do is a lot of "coding" in html and other information manipulation/transfer. It's not long into that work that my head starts to hurt again.

These days I am mostly fine, it doesn't hurt to think the way it did a few weeks ago.

But, my thinking is slow and gets confused sometimes. I get really frustrated at times. I am more emotional than ever these days (I've always been a bit emotinal) and I cry at the drop of a hat. I was crying like crazy as I kept googling, and googling trying to find a group like I have found here at BTG. I am also noticing what I think may be some symptoms of PTSD (Post Traumatic Stress Disorder). And, I am adverse to making love again - what was a previously much enjoyed activity, now terrifies me.

The garden is overgrown as various crops are being taken over by the weeds. I cant' do the weeding, and when my hubby is home he's parenting our 2 year old, so he's not doing it. Crops that we have are not being harvested on time as again I can't do the work. I was out there picking raspberries this morning, thinking I don't have to bend over, nor lift my hands above shoulder height, but even then I got a nice crick in my neck and headache. I finished the job and got 3 good buckets into the freezer, but I'm afraid I'm going to suffer for it tomorrow with another "hangover".

My GP is a great mechanic and while he knew right away what was happening to me back in June, he figures that I should be more on the mend and that I may need to consider psychotherapy, as he believes that I should be back to more work and my other activities.

I have no energy for artistic pursuits which is very depressing for me, but the cement sculpture I was in the middle of doing is too much physical work for me these days. Same for working with clay. The September 2nd stage show that I was working on will have to go on without my assistance, as I'm just not up to choreographing and working with people.

I used to be very outgoing and social, but now I get anxious when I am around people that I don't know. People I do know I can handle in groups of 5 maximum. More than that and I'm overwhelmed, anxious, tired and unable to communicate.

Even writing isn't working for me as my thoughts go around in circles and are difficult to keep on track.

I've been reading posts here for the past 2 days since I found BTG and I think that you who are reading this may identify with so much of what I'm talking about.

And, reading those posts I see how minor my own difficulties are. I didn't have an aneurysm (as far as they know), it is expected that all will return to normal for me within some months, and I am so lucky to still be here and be Mama to my beautiful girls (even if Mama to my 2 year old consists of morning cuddles and bedtime stories, these days). Even with my minor challenges, I am so very grateful to continue to enjoy this gift of life.

Thank you for reading some of my story.

Riane

Edited July 25, 2011 by Riane

[Sandi K]

Riane, I felt the same as you when I found BTG. There just aren't that many people with subarachnoid hemorrhages on Vancouver Island (and definately fewer on Denman!) and PM-NASAH is very rare. Its so rare and because we are expected to recover and never have a repeat bleed there is almost no information on what recovery is like for us.

What I've realized by being a member of BTG is that we are very similar to those who have had aneurysms but our recovery moves faster in many ways. In others, such as fatigue we seem to be the same or similar.

I will come back on and write more later. Hubby just came home and dogs are going crazy.

Sandi K.

[goldfish.girl]

Rhian & Sandi - so glad you found each other!

I don't really see why non aneurysm makes a difference (I wait to be corrected the damage done to your brain by a bleed does not discriminate what the cause of the bleed was - it was a bleed which would have interfered with the flow of oxygen around your brain surely? - not that i'm a medic ....but....isn't it obvious that the cause doesn't change the outcome?????)

Anyhoo - glad you found each other & BTG, hope you are 'chatting' while UK sleeps!!

Michelle xx

[Bill B]

Don't be too hard on your doctors.

We are the Cinderella condition of the medical world.

SAH is the last thing anyone suspects, everyone on this site will tell you the same.

Wait a minute,.... no,... In my case, it was the first thing they suspected....but everybody else!

I can relate to the loss of creative drive, as apathy and social isolation invade your waking hours.

BUT.... here's a thought that may help.

The darkness that occludes the everyday fizz of your former life, can be turned into a new creativity, removed from former thinking, but empowered with a new drive, based on the very lack of motivation that formally drove your creativity onward.

Make your sculptures, but make them damaged and incomplete. Reflect the reality of where you are now.

Since my SAH, I have written Two albums and two plays, all influenced by my SAH.

I am more proud of work post SAH, than anything I produced before.

Write about your circles and endless dead ends, with your new insights.

You will emerge from all of this with a new perspective on life,....or I'm an unfinished concrete sculpture!

Probably am....what do I know?

Non of our (BTG People) events are minor, we all know the debilitating effects of major or minor bleeds.

The medical world dismisses our fatigue and encourages us all to return to former lives.

But, we, on this site, all know , that it takes years to return, to even part, of what we once were!

Welcome to BTG, Riane,

you are amongst people who understand the individual, crippled path that you have to travel.

I hope your creativity smashes through your block.

All the best ,

Bill B. x

[Sandi K]

Riane, I have pm'd you. I'm so glad you found BTG, it really is the best support available. These people are warm and caring and going through it too.

Michelle, I think you are right in that we've all had bleeding on the brain so we are all recovering from that.

And yes, nice to have someone join who is in the same time zone as me! Its too bad that the reason we are talking is because we had brain bleeds!

Sandi K.

Edited July 26, 2011 by Sandi K

[tracy]

Hi Riane

Welcome to the site, My SAH was a NASAH too, but im the same still so tired and can only do small activities.

Well we have few canadians on site now so you can all chat while we in Uk are sleeping.

Hope to hear from you soon

Take Care

Traci S xx

[Louise]

Hi Riane

A warm welcome to the site, Im glad you found us....

[winter]

Welcome Riane,

You'll find the folks at BTG very supportive and full of information. I'm glad you found this site so early into your recovery! The people here have been my lifeline for the last 1 1/2 years

I am always shocked at the way medical professionals seem to think those of us who've had SAHs should just go home and get on with life, as if nothing much had happened! I do understand that the majority of doctors (throughout their entire practice) will never actually have a patient who's had a sah. Wouldn't you think, though, they would take such an opportunity to learn as much as they could, when they are presented with such a case?! Ah well....

Hang in there sweetie! As the others have said, you're not alone in all this. We're all here to help each other get through these new chapters in our lives.

Hope to hear more from you!

Carolyn

[Skippy]

Hi Riane

Welcome to the site and to the family.

Nothing of what you have said will be alien to people on BTG. All of our symptons mirror each others in varying degress with or without an aneurysm. PTSD sounds vry likely - I had this and seeing a counsellor really did help me in my recovery - even more finding BTG has helped me come to terms with a lot more.

You are VERY early in your recovery and it angers me that Docs seem to think that cos we're "mended" then there shouldn't be anything else wrong. I was lucky enough not to have a heap of lasting effects, but there are still things that I cannot cope with that were second nature to me before. I do push myself sometimes and there are times when I pay for it the following day - but there is light at the end of your tunnel and you will come out the other side.

Bill gave some brilliant advice - he is a very wise man full of great advice.

Look forward to talking to you some more.

[Riane]

Hello all,

Thanks for the warm welcome. I am really so very happy to have found you all. Thank you Karen for creating this site, it really is a godsend right now.

Sandi, I'm so happy there is someone in my own time zone and in my own west-coast cultural context. I'm looking forward to connecting with you more.

Bill, thank you for your perspective. I think I'm finding my way to a similar place - it seems to me that I'm going to have to engage in grieving who I thought I was, to make room for who I will become. I have read your story and some of your posts, it seems that you have taken the opportunity presented by your event to remake your life. I trust that I will get there and will find a return of my creativity. It's difficult for me to take on my former pursuits as they are taxing on my body or brain and I need to rest right now.

Having said that, as I was taking my daily walk yesterday it occurred to me that perhaps now is the time for me to get back into photography, which I haven't had the quiet time and space to indulge for a few years. Today I will take my camera on my walk with me. Maybe I'll take broken photos

Tracy, when did you have your NASAH?

Thanks for the welcome Louise.

Carolyn and Skippy(?), How come the medics say we should be back to normal in a few weeks/months? Did they ever talk to people who had a SAH? I just don't get it.

The GP that gave me morphine and left has called and left me a message and wants to talk to me, but I just don't have the energy to deal with him right now. He's a fairly young doctor and is very, very sure of himself, we've had some incidents where we don't see eye to eye, in the past - mainly because he has told me, the patient, that what I am experiencing is not what I "should" be experiencing. I hope that this has shaken him up a bit and perhaps he will be a little more careful in the future. Maybe he'll consult more with the other, more experienced GP's in his practice.

The GP who diagnosed me trained in neurology, so I lucked out on that one, that's why he know an SAH when he saw it. However he has taken what he learned about SAH to heart, namely that it should be cleared up in weeks. He's an excellent "mechanic" - his approach being that if there is nothing showing up on a CT scan then there is nothing there. He thinks I should be back to me, and if I'm not it's because I have some deep seated emotional block that should be dealt with by a counselor. I have done talk therapy before and while it was useful then, it just doesn't feel right for what I'm going through right now.

Don't get me wrong, it's great to be here talking and getting affirmation that what I'm going through is normal and acceptable. But going to a counselor who will help me uncover the emotional causes of why I'm so emotional just upsets me furthur. I'm emotional because things are different in my head. Please don't shrink it, 'cause that will only increase the pressure.

Luckily, I have other options. On Friday, I am seeing a Doctor of Traditional Chinese Medecine (who looks at the body in a wholistic way rather than just a mechanical entity) for accupuncture and perhaps some herbs. I am also working with a yoga teacher who does restorative yoga.

For all my complaining I actually live in an amazing community with lots of support. And, it's amazing to find you all here and expand my community connections. Here I dont' have to explain why I'm feeling how I'm feeling.

You get it. You live it.

Thanks again for the welcome.

Riane

[kempse]

Hi Riane,

A warm welcome to BTG. So glad you found us all so soon after your event - being amongst people who have experienced the same awful event is a great aid in recovery. It appears you are already discovering that how you feel is actually quite normal after a sah and that things can and do improve over a period of time. I'm sure it must be frustrating for you to see your garden suffer especially with all the hard work that must have gone into it.

You sound very creative so photography seems like a good starting point - also seeing how well you write, maybe that could be something for you to continue, although I would imagine it could be quite tiring for the brain.

I wish you well in your continued recovery,

with best wishes,

Sarah

[Karen]

Hi Riane and welcome and thanks for your thanks!

Non-Aneurysm SAH normally has a very good prognosis and you may feel like kicking me, but you're honestly very early days into recovery and you're going to have to be good to yourself and give yourself some time to recover from the bleed. The earliest date that most people are given for recovery in the UK, is 3 -6 months (which can be very unrealistic) .... and believe you me, a few of us, don't make that six month date, as to complete recovery, depending on the brain damage due to the bleed ... which can feel like a kick in the teeth.... however, recovery does and can, continue to take place over many years, which is something that I've experienced myself.

There are many people on here who have found the mental issues difficult to deal with, especially "will it happen again?" ... many of us have experienced emotional lability, anxiety and depression. Don't believe that you should be "back to me" within a few weeks or months and yes, you're right that many GP's can deal with the mechanics of a SAH, but not the emotional issues, fatigue or short term memory problems ... we know that these exist, as most of the members here, have experienced them. We've currently got a survey/questionnaire running on BTG, from Kings College London about these issues and we're hoping that this research will help to push the mental health/fatigue issues further forward.

I was once told, that a GP knows a "little" about everything, rather than expecting them to be able to specialise in every subject ... may be, you can, over the next few months, "teach" them your own experiences?

I'm sure that once you manage to regain some energy, that you're art will start to resume .... don't put a time scale on it, as at the end of the day, you're the most important thing to manage ... it really does, all get better and just give yourself and your brain, some time to heal....xx

[jess]

Welcome to btg sorry you have to be here. Drink plenty of water and rest as much as you can and try not to stress. Look forward to chatting sometime. Jess.xxx

[Bill B]

Riane.

Forget the chisels, forget the clay, pick up thy camera, and walk!

I know it's hard, to let go of the deeply embedded certainties of life.

We all see our lives mapped out in some, fragile vision of what we hope will be our future.

We, however, and by "we" I mean, some of us on this site, know, that the projected, mythical future is only going to be , what we decide it's going to

be.

Many people on this site are not of an artistic persuasion.

People who desire creativity are blessed, because, the motivation to create is a fantastic aid to recovery.

People of faith, or strong views, in any sphere, are also very lucky, as the frameworks in their particular circumstances will support them.

Artists, on the other hand, have to face these realities alone.

It's very cold out here, where no one else has been.

No religion - crutch, no groups of like- minded people affirming your vision of reality.

You said you were a Hippie, well so was I.

The high water mark of the Hippie revolution was 1970. Joplin, Hendrix , Morrison....after that it all began to unravel.

What remained, after the carnage, was the universal message of love.

We live our lives in fear, or in love.

It's a choice, it's always a choice, fear, or love.

The circumstances of your event have led you to this point.

You are tired, confused, and unable to pursue the former daily tasks or artistic directions that fulfilled your needs.

Yet the desire to be artistic remains, of course it does, because it's part of what you are.

I don't even need to say it, do I ?

Expression is a need, the means of expression is irrelevant.

Art is!

It just is.

If you are part of it, you will find an outlet for expression.

Pick up thy camera, and walk Riane, or return to previous endeavors, but don't give up on your art.

Money comes and goes, but art, once created, lasts forever.

(Can you tell, I teach creativity?)

Rant over, embarrassing ex-hippy knows when it's time to shut up.

I looked at your location in my atlas.

You are so lucky to live in such a beautiful place!

From the heart of Nottingham, I wish you peace and fulfillment.

All the best.

Bill Bx

[Riane]

Hi Bill et all.

Yep, I think I'm starting to get it. Let me recap...

Boom! Thuderclap. Emergency. Scan. Scan. Stand down. Go home. Recover. Recoup. Regroup. Get back to life.

Wait....it's not working. Cry. Rail. Get mad. Cry more. Get scared. Damn my head hurts. Sleep. Sleep. Sleep. Wear sunglasses and a hat everywhere to keep the light down. Don't leave home without earplugs. Don't be home with kids without earplugs. Grieve.

Grieve.

Grieve.

Lift head up and find some little thing, some small thing, any little bitty thing that brings a small glimmer of joy and spend little bits of time with it. Forget artistic obsession 'cause that only brings the hangover the next day. Listen to the early warning signs and pay attention. Stop. Drink 3 litres of water a day to keep the headaches down.

Reach out and find others who have already/are walking this road. Know I'm not alone.

Become an annoying advocate for my own health. To the medical community, to my family, to myself.

Heal.

Be grateful.

Walk.

[Riane]

Yesterday was a difficult day. I didn't leave the house. Couldn't even make it out for my walk. Stayed in bed all day. Had the laptop with me and did a bunch of research on PM-SAH.

Ha! There is really very little research to find. All the studies talk about the "excellent prognosis" and how the patients have such a great quality of life after 36 months. Where did the doctors get two-three weeks from?! Where is the information to fill in the blank of that 36 months?!

Sorry, my outrage is a little over the top right now.

I'm so glad to hear that the British medical system is more civilized in their approach to allowing the space and expectations for recovery time, unlike here in North America.

But, all that research and hearing from you folks over the pond about how things are done in the UK has galvanized me.

I called my doctor today. We had a long discussion. He has agreed to - send a referral for a follow up four vessel angiogram; give me the necessary notes so I can claim medical disability; give me a referral to a counselor (which I have now agreed to see).

I am realizing that I'm going to have good days and I'm going to have bad days, and what I need right now is to have the self-centred time to be with whatever kind of day I have.

Thank you again to everyone here for being here. It makes such a difference to hear your stories/experiences and know they are a reflection of my own journey. It has helped me to come to terms with where I am...at least for today, it has.

R:-)

[jess]

Hi glad we could be of some help. It is a hard thing to come to terms with noone can see our brains noone can understand how hard it is recovering they don't understand about the what if it happens again the things you can't stop thinking about. Well hope you feel a bit better since finding us and hope we continue to be of help through your recovery. Jess.xxx

[Janet]

Hi Riane

Belated welcome to the site so glad you're finding it useful. You have already been given lots of good advice so all I will say it take it day as it comes be kind to yourself and try to listen to your body and rest when you need to. Wishing you all the best for your recovery.

Janet