Karen's Story

July 25th 2005 – My SAH

After a week of going backwards and forwards visiting the Doctor with a seriously bad headache and pain over my right eye, I had my SAH. My GP at the time had asked me if I had “personal problems” or “did I think that I had a brain tumour”, I was in tears at the time, due to the pain and he made me feel even more stupid after I mentioned that I’d had a probable small bleed on the brain, 4 years earlier and I was worried.

He made me feel like a neurotic middle aged woman. He sent me away with a prescription (their new computer system had printed my age down as 103 and not 42...I remember laughing at it and then bursting into tears) for yet more painkillers and promised me that he would phone me the next day to see how I was doing and if I was still in a bad way, he would refer me to the hospital for tests.

He phoned the next day, as promised, but said that he was happy continuing the course of treatment prescribed and wasn’t going to send me for any tests. I was angry, but in too much pain to argue and couldn’t believe what he had just said. So that was that.

4 years earlier, I’d had a probable small bleed on the brain, but the MRI results were inconclusive, it might have been or might not have been etc. and I was basically told just to get on with life (No other tests were given).

This event had prayed on my mind for a good year afterwards and I gave up my job, as my GP seemed to think that the stress wasn’t helpful. I also had a problem with my right eye and was told not to drive for a while.

After the first three months, I started to return to normal, but a little fearful of the future after I had read up my symptoms on the internet. I wished sometimes that I hadn’t, but looking back, I’m now thankful for doing so, as when it happened again I pretty much knew what I was having.

On the evening of July 25th 2005, I sat on the settee and felt so awful, wondering how much more pain I could take. (I had visited the GP again that morning) I felt as though my head was going to blow and suddenly felt and heard a “whooshing of air” through my head (the same as I had 4 years ago.

I shouted out to Eric in sheer panic, as it was the same symptoms of my warning bleed 4 years earlier. This time though, I lost all feeling down the left hand side of my body and I couldn’t feel my leg or walk. I knew that I was going to be sick and asked for something to be sick in, I couldn’t move.

Apparently, I then had a seizure and I can remember Eric talking in the background and calling for Chris to phone for an ambulance. Little did I realise at the time that I had peed myself as well. I must have been drifting in and out of consciousness. I remember pleading with them that I didn’t want to go into hospital.

My daughter was in her bedroom when the Paramedics turned up and I remember her sobbing as they took me out of the house. I was conscious at this point and able to shout out to Chris to take care of her for me. (This still reduces me to tears, just writing it down, as I still hear that fear in her voice.)

I was put in the ambulance and went on to have another two grand mal seizures on the way to hospital and they put the blue light on.

I can’t remember anything at this point and on reaching hospital, I was given a CT scan and it was confirmed that I had suffered a SAH. Eric tells me that I was still able to answer the hospital staff, but I can’t recall anything.

When I finally came to, I was in a hospital bed with a Nurse inserting a catheter and commenting “Oh, you poor thing, you’ve started your period as well, it must be the shock.” My first thought was, great, ****** brilliant!

I also couldn’t open my right eye; there wasn’t any pain, so I didn’t think too much about it at that stage. At least, I was still here and my thoughts were only of getting myself “fixed” and my survival instinct kicked in. I then drifted in and out of sleep, just so grateful that I was alive.

The next morning, I was transferred to the Neuro Centre at Southampton, but I didn’t have a clue what was going on, even though they had probably told me. It seemed as though my body had shut down and I had to get through this as I wasn’t ready to leave my kids behind.

Whilst I was awake, I felt mentally strong and looking back, I don’t know where this strength came from. I had no tears, just a sense of determination that I would deal with anything that needed to be done.

I arrived at Southampton and was put in the High Dependency Unit, where Eric and Lauren were waiting for me. The Nurses were great, but it all felt so surreal and I felt so weak and tired. I was given an angiogram and a MRI and was told that an aneurysm had ruptured on my right post communicating artery and it would need to be coiled.

I’d also suffered third nerve damage to my right eye and that’s why my eye remained shut. It was at the point when the Consultant mentioned that I probably wouldn’t be allowed to drive for 6 months to a year.

The following day, I had my operation and I can remember asking the surgeon to please make sure that I was asleep before they started. The op went fine and the next day I was put onto a normal neuro ward.

I was now extremely weak and tired and trying to eat or drink anything, was nearly impossible as I didn’t have the strength to move. It probably didn’t help with just having the one eye to use.

The only food that appealed to me was the jelly and ice cream, but I’m not sure how the nurses expected you to eat when you were lying down and couldn’t feed yourself!

I had severe lower back and leg pain and this continued for the next few weeks. I was told that the cause was the blood from the brain draining away down the spinal cord and irritating the nerve endings. I found this pain to be more severe than the headache and was given liquid morphine to help, it was worse than childbirth.

As the day progressed, I felt worse and worse. I was in agony and didn’t know where to put myself and I was drifting in and out of sleep. Eric and Lauren came in to visit me and could see that I was in a bad way. I was talking to them and suddenly a strange feeling came over me and I started to feel shaky. I had another seizure; apparently my sodium level had been allowed to go too low and I was transferred to another ward and given oxygen. That was probably my worst day.

Over the next few days, again, I just drifted in and out of sleep, in-between bouts of severe head and back pain. I could barely hold a conversation when people came into visit and the fatigue was overwhelming.

I was given a black pirates eye patch to put over my bad eye, as it had started to open and I had bad double vision, even so, I was still feeling so very grateful that I had survived.

A day or so later, I asked the nurses if they could remove the catheter so that I could go to the loo by myself. They helped me walk to the loo with my drip and I couldn’t believe how weak I was. It took the next few days for me to be able to walk to the loo myself with the help of my fluids stand.

A week later I was deemed well enough to be transferred by ambulance to Poole Hospital, which is only a couple of miles from my home. What a great feeling it was, to know that I would be closer to my family and even though I was sleepy on the journey, I was able to spot each landmark as I got closer to home. It was such a good feeling and a step closer to going home.

A week later, I was allowed to go home. Eric had put up grab rails in the loo and bathroom, as my strength had been zapped from my body. Thank goodness we lived in a bungalow, as I wouldn’t have been able to cope with stairs.

It was such a good feeling though, to be home again and my spirit immediately picked up. At first, I could barely shower or take a bath without feeling worn out. Getting dressed again afterwards, was particularly hard work as I just couldn’t get my body to move. It felt as though my muscles had completely wasted away. Walking from room to room was the most that I could do. I could barely pour cornflakes into a bowl without having to sit down.

A good friend gave me the loan of a wheelchair, as I could only walk a few yards unaided and so at least I was able to be taken for a walk outside in the fresh air.

I felt a bit of a fraud sitting in it, as during the walks, I would get out, walk, holding onto the wheelchair as an aid. As soon as I got tired, I would sit back in it. I felt like the character from “Little Britain”!

It didn’t help having double vision and wearing glasses that had been patched. It was like looking through Vaseline and I also couldn’t judge distance or height. Walking was a nightmare.

Bad head and eye pain persisted for quite a few weeks and the lower back pain was still a problem, but it seemed to be gradually easing. My appetite was still very small and the weight was just dropping off me.

Night time sleeping was a big problem for me. I couldn’t sleep without a light on; I was scared of the dark. Sometimes my dreams were so weird and vivid, that I didn’t know whether I was asleep or whether I was awake.

Some nights, I could be awake until 4.00am, I would have a ringing in my ears and my legs would be jumpy and twitchy. I felt as though I would go mad! Looking back, I suppose the cocktail of drugs that I was taking, could have been the cause of some of these problems.

For the first couple of months I wasn’t able to deal with very much at all. Form filling etc. my Husband had to take care of anything like that, as I couldn’t manage it.

Mentally, I felt all over the place and it seemed as though I could only cope with thinking about getting better again. Nothing else seemed to matter.

My short term memory was awful and I couldn’t absorb any information. I felt as though I was now living on a different planet. I could swing from laughter to tears of despair.

My first visit to a Supermarket was traumatic and I didn’t cope at all well. My eyesight was awful, my legs weak and my brain went into overload with the bright lights, piped music, door alarms going off, children crying and people walking at me. It was all too much and I had to leave and sit in the car whilst my Husband finished the shopping. I cried my eyes out in desperation and wondered what the hell was happening to me.

I was worried at first, about being left on my own in the house and the thought of “is it going to happen to me again” started to creep back. As the weeks passed, I became more confident being by myself, but I still had uneasy days if I was experiencing a bad headache.

I had days where I would feel so low with trying to cope with the physical aftermath of the SAH that I would just escape to my bedroom and cry.

Some days my legs were so weak that I could barely put one foot in front of the other, coupled with double vision and dizziness, I was a mess. I would become inconsolable and cry tears of frustration. I felt so frightened, so alone and felt as though nobody could help me. I always tried not to let my children see this, as I didn’t want them to worry.

My Daughter Lauren had been very affected after my SAH and I didn’t want to cause any more pain. For the first few months, she talked endlessly about the SAH and its trauma. I could see her pain. Life at home was very different during the first 3 months, it certainly wasn’t normal.

I cried buckets of tears over the thought that my children could have lost their Mum and I feared for the future. I felt like a different person now and wondered whether life could ever be the same again.

I tried to return to work 3 months post SAH. I must have been crazy, as I wasn’t well enough physically or mentally. After 2 hours of hell, I left. What was I thinking of? Trying to work in front of a computer screen with double vision and telling everybody that “I was fine”. I wasn’t fine.

I felt like a complete and utter failure that day. I went home in tears and it dawned on me that my recovery was going to be a lot longer than I thought.

It was at this 3 month stage that the DVLA notified me to say that I could drive again, providing that I used my eye patch. I was over the moon, as I was told to expect a suspension for at least 6 months. Not being allowed to drive had felt like I was being punished and my independence completely taken away.

I didn’t drive out by myself for a couple of weeks, as I still didn’t feel as though I was in control of my mind or body. When I eventually made my first car journey, literally just driving a few blocks away, I had to drive with the air conditioning blasting my face; I needed to feel the cold, needed to feel awake.

It felt so very weird and also very scary. Even my feet didn’t feel as though they were part of my body. I seemed to over emphasise every movement that before the SAH, would have been so normal that I wouldn’t have had to think about what I was doing.

May be it was the drugs blowing everything out of proportion, but I just didn’t feel in control, it wasn’t “me” in this body that I had returned home with.

Looking left and right was so difficult; my eyesight was all over the place, due to the nerve damage, I carried an assortment of glasses, cotton wool patches, not knowing which one to use or to make things feel better. God, I was a mess.

Lots of times, panic would set in and I could feel almost a shock sensation searing through my feet. I would have a ritual of playing some favourite CD’s in my car, knowing the words to lots of the songs; I knew that I could sing along to the tune and hopefully divert my mind off the driving and stall my feelings of panic.

It was at this point that I also discovered how bad my singing voice had become since the SAH. It wasn’t perfect before, but it was now horrific! I’m not sure if any other drivers, ever noticed me singing my head off, but I must have looked like a complete nutter, especially when I was wearing the eye patch!

My short term memory had also become very bad. I would walk from one room to another, forgetting the reason why I went in the first place. I had to start to make lists to help me remember.

My brain seemed to be on meltdown and was reluctant to absorb any information. Sometimes, I found it hard to think of the correct word to use, when I was speaking, that was so frustrating. I would also forget a conversation very easily.

One of my biggest fears after the SAH, was being by myself, in the Supermarket and experiencing a seizure.

My body was so weak and shaky, that when I was asked to enter the PIN number of my debit card, I would have to steady my hand before entering the number. I used to think that I was starting to go into a seizure and would worry also about the fact that I could be incontinent in the middle of a shop. My anxiety attacks started to kick in at this point.

About six months after the SAH, I was told that I could start to come off the anti-epilepsy drugs, as I hadn’t experienced any seizures since my coiling. The big risk of going ahead with this was the fact that if I did experience a seizure, I would lose my driving licence.

I was in turmoil, as the drugs had given me all manner of side effects and I was sure that they were causing me more problems than good, but I didn’t want to lose my licence again.

My anxiety became even worse when I started to slowly decrease the dosage of the AED’s. A week after the initial decrease, I felt physically and mentally ill.

I was even more tired, more worried, that I might have a seizure. I was dizzy and shaky. I thought that I would feel better immediately, once I had started to decrease on the drug. This wasn’t to be the case and it took me just over 3 months to come off the drug completely and two weeks after that, to actually start to feel a little more human. I hated taking the AED’s.

I think that these drugs helped to rob me of any little self confidence that I had left. My anxiety hit the roof and I started to experience panic attacks. I think that I was probably at one of my lowest points at this stage.

I am very grateful to the SAH Support Nurses, Sarah Halcrow and Lesley Foulkes, who would take time out to listen to my ramblings either by e-mail or phone.

Once I had left hospital, I had felt a little abandoned, I suppose. I didn’t know whether I was coming or going and my initial GP was lovely, but seemed to have less knowledge than I did. I also discovered that I should have been having blood tests for my AED levels but wasn’t being given them.

I only realised that I should have been, once the Support Nurse had asked me what my AED level was, after experiencing problems. I didn’t have a clue what she was talking about at the time. She was amazed that in 3 months since my release from hospital, that I hadn’t been given a blood test.

I decided to switch my GP and I’m glad to say that I’ve now got a brilliant one, who has restored my trust and I am very grateful to him.

At this point, I started madly researching SAH, coiling, seizures on the internet. It seemed to be the only way for me to access the information that I was looking for. I read every article that I could, often regretting the outcome of what I read.

May be ignorance is bliss sometimes, but I also felt that knowledge was power. I had already ended up in hospital due to lack of awareness, and I wasn’t going to let that happen again. After the initial feelings of being grateful, I also started to have feelings of anger, that if my SAH had been diagnosed properly earlier on, then I may not have experienced the nerve damage to my eyesight.

These angry feelings did eat away at me for some weeks, but I knew that these thoughts were destructive and I had to put them to bed, which eventually I did.

I have also found that my pre-menstrual tension is a lot worse since the SAH. My emotions seem to be more exaggerated or enhanced than they once used to be. My temper is quicker, but still fair; it’s just that I really don’t want to waste my life with stuff that doesn’t matter anymore. I get irritated when people make a mountain out of a mole hill or kick off about silly things.

I also participated on a SAH Message Board website, linked to Southampton and Salford Hospital. I have found this to have been a Godsend. I really feel that you need to be able to talk to fellow sufferers and share experiences. When I have had down days, there’s always been somebody to share it with and vice-versa, there’s always somebody worse off, than you.

July 2006 – I have just had my 12 month SAH Anniversary. Only now, has my life started to become more bearable. I am now having more good days than bad days and I feel more hopeful about the future.

Earlier this year, I had one good day out of three months. I wrote it on the calendar, “Good Day!” as I felt so happy about it. Three months later, I hadn’t had any more “good days” and therefore decided that when they happened, I wouldn’t mark them down, as I felt as though I was tempting fate.

That was an awfully bleak time for me and I often wondered why I had survived the SAH, as sometimes there was a sea of nothingness and I just felt despair and pain.

Eric, Lauren and I, celebrated my anniversary at Lyme Regis. I still couldn’t walk very far, due to the eyesight and balance problems, but brought a fold up camping stool with me in case I needed a quick sit down! (I’ve now got used to people staring at me!!!) It was baking hot and pretty unbearable, but the whole day felt cathartic to me. I had plenty of time to reflect on the past year. It was a good day, I felt as though I was only now starting to make some significant recovery, both physically and mentally.

Finally, my energy levels are returning and the word “fatigue” isn’t dominating my life anymore. The anxiety is still there. It’s a little better, but it’s still lurking away ready to jump up and bite me on the bum.

The Doc has put me on Beta Blockers to help calm me down and to help with my migraines.

I also suffered from an exaggerated startle reflex and I would jump out of my skin at the most ridiculous of things. Even though this reflex appears to have calmed down, I still suffer from it when I’m tired.

There’s not a single day that goes past, where I don’t think about the SAH or my own mortality. However, now it doesn’t overtake my life. I used to liken it to an unwelcome guest that would keep popping “in and out” of my thoughts.

I’ve teetered on the edge of depression and count myself lucky that I’ve been able to pick myself up. Not sure sometimes where I’ve found the strength, but somebody has been looking out for me.

However, each time I’ve dipped in and out of depression, it’s been doubly harder to pick myself up again. I suffered a bout of depression just before my 12 month SAH anniversary and it was unbelievably hard to deal with. I thought that may be this was going to be the time where I wouldn’t be able to deal with it and I might need to seek some help.

Luckily for me, the black cloud lifted and for that, I feel blessed. I have read that many people post SAH are put on anti depressants.

I still can’t make plans. I suppose that having a near death experience changes you. I can’t really see the point any more with planning for the future, as I realise that I might not be here.

To me, it’s a waste of time and energy and I would rather take each day as it comes. I suppose that I realise that I have little control over my life and would rather enjoy what I have today, rather than trying to map my life out for tomorrow.

I used to think that I was an organised person and needed to know what I was doing in the next few weeks etc. Now, I seem to leave any organising until the very last minute and deal with stuff on a day to day basis. This probably does annoy my family, but my brain doesn’t seem to want to function in a different manner. Whether this will change with the passage of time or not, I really don’t know.

My self confidence has definitely waned. I suppose it’s inevitable really, if you can’t get out and about. Your head is a mush. The little things that you used to do and took for granted suddenly become a huge mountain to climb.

Unless, you have suffered a SAH yourself, nobody can understand this. Being frightened still hasn’t left me, I’m not frightened of dying, but frightened of the turmoil that I will leave behind I suppose.

I still become frightened when I have strange pains in my head or the pressure builds up in my ears and I would be lying to say otherwise. However, I know that when I was taken ill, that past the point of intense pain, I felt extremely peaceful and if I had died at that point, I wouldn’t have known anything about it. With that knowledge, I can find some peace.

I have recently discovered that my aneurysm hasn’t been totally occluded and that the coils have compacted. I’ve read many papers on coiling and therefore I know that it’s not an ideal situation. After my Angio check-up several months back, I was sent a letter telling me that the coiling was “satisfactory”.

I was hoping to see the words “excellent” or “successful”, I didn’t want to see “satisfactory”. I suppose that I wanted to be reassured that I would never have to endure this again and that all would be okay and that I would live happily aver after.

I felt frightened at first, but I now think that I’ve reached a point of at least partial acceptance. I have felt so much fear in the last 12 months, that at points I didn’t know whether I would be able to come through it.

I have now decided to just get on with the life that I now have, it’s not perfect by any means, but it’s the only one that I have been given and I can’t change what’s happened. I haven’t got a clue what the future may hold for me and I’m not sure whether or not I would want to.

I’m now at the point where I feel that I can start to re-build my life. I’m so very glad that I didn’t know that it would take me this long to reach this stage. I still don’t feel fit enough to think about looking for a job, but at least I feel more capable of functioning in the home and carrying out the day to day challenges. I’m heading in the right direction and feel so much more positive than I did a month ago.