Karen's Update

[Karen]

Hi to all,

Just booked in to see the Doc at the end of the month. He's good, hence the waiting time! Have been wildly searching on the net for an answer to my ongoing problems. Hate doing it, as makes me feel quite scared at what I find sometimes. Often don't feel as though I have a choice, as the medics don't seem to have any suggestions.

I have occassions where I feel as though I might be going into a seizure. weird head pain/pressure, weak leg, muscles spasms/twitchy muscles, dizziness. Still, find it all very frightening when it starts to kick off.

Anyway, to cut a long story short, I did wonder whether my sodium levels were getting low. I remembered that this did happen just after I had the SAH and I went into a seizure. So, after searching the net with my symptoms etc. it came up with dehydration and lack of sodium. (I do drink lots of water anyway.)

Today, I decided to take a Lucozade Isotonic Sports Drink with electrolyte to see if it helps. So far, so good, not sure whether it's purely coincidence or not, but it's certainly perked me up....... anyway, it's worth a try and I will drink a bottle a day to see if it does the trick!

Just hope that it's that easy, but not holding my breath!!

Take care all,

Karen x

[Skippy]

Hi Karen

I'm new to all of this, but did you have siezures before the SAH? I only had mine three weeks ago and am still very much in fear mode - ie it will happen again even though they've told me it won't etc. I just have tired headaches at the moment and still feel very depressed and scared to be alone. Any tips on how long these feelings are likely to last?

[AndyH]

Hi Karen,

I havent been on for a while due to ongoing issues around my darling Heather!

How are you? Hope things are settling a bit. I know what you mean about digging for info on the net. I scared myself silly when Heather first had her bleed. Luckily all the stuff I found was worst case scenario and fortunatly we managed to avoid all that!

Well on to the dehydration and sodium stuff. Last year (2005 pre-bleed), I went to Thailand for a month. I was out there doing Thai Boxing, training twice a day in tropical heat! I soon began to feel very ill and experienced massive bouts of lethargy coupled with very painful headaches. When it got really bad one of the other westerners asked me if I had been taking any salt supplements. I told him no, that I had just been drinking water. He then produced some packets of electrolyte salts and told me to have 2 a day. I had one immediatley and within 30 mins I felt 100% better.

When I went this year I didnt suffer at all and I think this is down to the fact that I was having electrolytes twice daily! Anyway, thought this might help.

Take care.

Andy

[Karen]

Hi Andy and Sami,

Thanks for your replies.

Andi - How's Heather going? I know that you said that she had picked up and was taking more care of her appearance etc......that must be a good sign in itself? It was really interesting to hear about your experiences in Thailand re: dehydration.......I've only been taking the Isotonic drinks with electrolyte, for a couple of days......but they do seem to help.....not sure whether it's purely coincidence or not.....but I will keep going with them, as I certainly feel as though I have more energy if nothing else!! Do you think that there's something in this or not? Oh well, watch this space!! How are you coping with everything? It must be so hard tryng to juggle everything.

Sami - No, I didn't have siezures before the SAH. On the night of my SAH, I had 3 Grand mal seizures and a seizure after my coiling op, due to low sodium levels. Did you have seizures before or after your SAH? I've found it very hard to come to terms with and still worry about having a seizure now, even though I've been seizure free since the SAH.

Don't be to worried about your feelings about being left alone. It's perfectly normal, you are so early on with your recovery that you are bound to be feeling as though everything is up in the air. Honestly, it does all get better with time and even now, when I'm having a "bad day", I still don't like being left on my own. Do you have family around you? I used to have many days when I would just sit and cry. Cry out of tiredness, the trauma, fearful for the future and cry that my kids might have lost their Mum. I seemed to have a million and one things to cry over.........but it does get easier with time. Don't get me wrong, I still struggle now, especially with the physical stuff that I'm left with, but it does improve. Just be kind to yourself, listen to your body and talk!!!

Hope that the day has been kind to you both,

Take care,

Karen x

[andyp]

Hi all-I remember feeling that I didn't want to be left alone-my confidence went out of the window and my wife says I became like a scared child.

With time it does improve-confidence will return-I hated crowds and was so sensitive to noise for several weeks too.

I think everyone has varying degrees of depression-some are on pills very early on ,some later and some not at all-Any of these are possible!

Best wishes to all

Andy P

[Karen]

Hiya,

Well, 14 months on and I'm still ultra sensitive to noise, still hate crowds etc. (Probably because of the dodgy eyesight and find the movement too much!)

Does anybody else find this?? Could this be depression related or just the SAH aftermath?

I'm not quite so jumpy now, but when I'm having a "tired" day.....anything that moves frightens me out of my skin!

Love Karen x

[Skippy]

Hi Karen, Andy

No I didn't have siezures before the SAH and as far as I know I didn't have one during and I know I haven't had one since.

Bright lights and sudden noises are the worst for me. I'm trying to stay upbeat and positive and try to look forward - something to aim for but realistically.

When I get down I look at my beautiful daughter and realise how lucky I am to be here still and instead of dwelling on what could have happened I try to look forward to getting completly better so that I can start to do more things with her again.

I've found a support group in Nottingham where I live and my husband, my daughter and myself are going to give it a try next month - I'm just scared of facing the worse case scenario and feeling so lucky that my SAH was relatively small.

Anyway guys, thanks a million

Sami xxx

[andyp]

Sami I am sure the support group will be of great help..you need to talk to as many people as you can who have had a similar experience!

My daughter was 6 (8 now) and that is a real encouragement in itself to keep going.

There will be times no doubt when you may feel really low..but there will be times when you have moved on too!

Keep a daily diary and I believe that will help you chart your progress.

Family and true friends are so important at this time too-their support will see you through.

Above all as Karen says ..listen to your body..don't overdo it and don't be hard on yourself.

You will come out of this stronger ..but it all takes time!

Best wishes

Andy P

[Skippy]

I think I learnt this weekend that I really do need to listen to my body more. The family and friends I saw this weekend have really cheered me up and Sunday was a lot better than Saturday. I still feel that I need to have some one to talk to on a professional level as, like I say, i have received no information regarding the SAH, recovery, emotional issues or anything.

I have my diary and am going to keep track of the good, th ebad and the ugly!!!

Saturday was the lowest point I have reached yet and although the emergency Doctor was fabulous and did everything he could to get me seen that day - the crisis centre and therapists didn't want to know and I was sent home with the advice to come back if I got worse. Talking to my sister in law and getting the information I needed from her (she worksat a hospital) was all I needed. Will let you all know what the Doc says this afternoon when I get back

Sami xx

[Karen]

Hi Sami,

So very sorry to hear that you've been through the mill this weekend.....good luck with the Doc today and let us know how you get on....will be thinking of you.

Your experience of the lack of aftercare, post SAH seems to be the norm. Personally, I think that there should be follow up care for at least the first three months, if not longer. It seems to be that once the hospital have "fixed" the problem, then your basically just left to struggle on, not knowing what to expect or what's normal in recovery. I have obtained more info off the internet than anywhere else.....when I've asked the medics the questions, they just haven't been able to give me the answers. They say simply "that they do not know" or aren't qualified in this area. When you're struggling with the physical and mental aftermath it's just not good enough. Hence the need for sites like this one.

Anyway, keep banging on their door and if you're not happy with things, knock a little louder!!!!!!!!!! At the end of the day, the medics can walk away, but you have to live with what you're experiencing and you shouldn't have to struggle.

Take care,

Love Karen x

[Skippy]

Hi Karen

I will knock as loud as I have to believe me. Today I'm having a really good, positive and happy day. I feel normal as almost as if this hasn't happened to me. I know that my SAH was minor compared to most but the depression that overwhelmed me on Saturday was scary. Yesterday we tried to do what we normally do on a Sunday. My husband runs a football team so we met them after the match at the pub and I saw friends that I'd not seen since before the SAH and we had a great time, we then met my husbands parents in another pub and had a meal with them.

Today I feel almost on top of the world and am left wondering whether Saturday was the worst of it and it only gets better from now on. The headaches are getting better and I haven't had to take anything yet today or have a lay down. So in Samiland all is well at the moment.

I will keep you posted this afternoon tho as to what the response from the Doc is and what information I'm given.

Take care and lots of love to all reading this

Sami xxx

[Karen]

Hi Sami,

So glad to hear that you are feeling much better. It seems to be the thing with SAH recovery, that it's very up and down, both mentally and physically. Most of us liken it to a Rollercoaster ride - one day up and the next down etc. My recovery has been like that all the way along.....you do gradually get better, but I found that the milestones were so slow coming, that I really didn't notice that I had turned a corner.

Sleep and rest appear to be a key player in the recovery......so please make sure that even if you don't feel like taking a nap, that you will put your feet up and watch some daytime tv or something!!! You are still very early on with recovery, so don't overdo things even though you may feel up to it.

Speak to you later,

Love Karen x

[Skippy]

Hi Guys

Just got back from the docs. He was brill. he gave me all the information about my case that I had not been given. My SAH was 2cm in diameter and was coiled successfully causing a slight grazing to the front right temple area where the blood reached - this explains the frontal headaches at least. My notes also said that I would receive an outpatient appointment in 6 weeks but other than that they are very happy with my recovery. On the mental/emotional side the Doc referred me to their in house counsellor who is specially trained in dealing with emotional trauma of all kinds.

I feel so elated coming from the Docs - i feel normal.

Its my mothers birthday tomorrow and I even managed to go and get her a present from the city centre - hubby was with me. Am now eating lunch and then I am going to have a rest.

The doc gave me an alternative to paracetamol too so I now have more power keeping the headaches at bay.

Hope all is a good as can be with everyone else today.

Lots of love and thanks for the support

Sami xxx

[Karen]

Hi Sami,

I'm so very pleased that you've been able to obtain some info from your Doc.......you seem a lot happier and hopefully he/she has pointed you in the right direction! Sounds as though you have a good one! Wish all GP's were as helpful as your's!

Well done, you've probably achieved something that takes the rest of us months to do!

Hope that you had your rest/nap.......? Do take it easy though, no matter how you feel, it really is essential to take a rest, especially with kids!

3 new people have joined the site today, so really pleased! Did wonder whether this site would work out.....but I think that being able to talk is really good and essential with recovery.

Anyway, so glad that you've been able to get some help,

Love Karen x

[Skippy]

Yeah I feel happier that I've heard what I needed to.

Karen this website is a god send. It gives hope, support and information. You and Andy have been just what I needed to get through this.

I feel lucky and feel that I have achieved a lot this weekend but I also know that my situation is very different to others and that I have, by comparison, had it easy. I feel very blessed and very lucky to be where I am today as far as recovery goes.

I'm lucky in as much as my husband and I run our own company and that I can do little bits each day to keep me sane. We have a bed set up in my office and when I'm tired I lay down on it and sleep.

This may sound mad but I believe my Guardian Angel has had a lot to do with it, as well as knowing that you guys are here.

Going now as I'm gonna have a nice relaxing bath tonight and an easy night in front of the tv.

Catch you all tomorrow

Sami xxx

[Karen]

Hi Sami,

You're doing really well.......keep positive.....so glad that today has been good...............hope that you have a nice relaxing, bubbly bath and a chill out..you deserve it.......remember, be kind to yourself!

Speak soon,

Love Karen x

[Skippy]

Hi All

Had a lovely bubbly bath thank you.

Not such a good nights sleep though. I keep worrying about siezures. I've not had one and according to my Hubby the docs said thats what the Nimopodine I was taking was to prevent and that I won't have a siezure now.

Still feeling up beat and positive today though, its my mum's birthday today so I feel that's giving me something to be happy about in a weird kind of way. My friend is getting married on Friday so I'm aiming to go to the reception on Friday night and thats giving me something to look forward to aswell.

I'm trying to do normal everyday stuff in the morning - like straightening my hair and putting on a bit of makeup - the stuff I used to do before the SAH. Came to the conclusion that if I can look nice then I'll feel good - touch wood its working at the moment!!!

Catch you all later xxx

[Karen]

Hi Sami,

I'm having a tired day.........should really start taking my own advice re: resting up!.......have done too much in the last few days and my body is paying for it today. I liken it to somebody flicking a switch in my head and turning me off! There's never too much warning when the fatigue decides to kick in again. I still can't believe that 14 months on, I can still get so tired, it feels never ending.

Had a good mate over for coffee this morning.....it was great to see her and catch up with the news......but she went on early, as in the end I couldn't even hold a conversation. Anyway, just had a 2 hour nap!

Try not to worry too much about having a seizure.......like you, I've constantly worried about having one, especially after coming off the seizure drugs. I'm calmer about this now, but worrying about seizures also caused me to have anxiety attacks and I was put on to Beta Blockers. Try your best to divert your mind from thinking about them. I know its hard......but don't end up like me!!

No, there's nothing wrong with doing the normal stuff.....such as hair, make-up....... I think that if you look a mess (like I do at the minute after napping with hair sticking up etc and panda eyes!) it doesn't make you feel good. So, if I'm up to it, I always try to "put a face on" etc.....it's good for the spirit!

Good also to hear that you're making plans to get out and about, which is great. You're doing really well!

Anyway, still so tired, (lying down on sofa with my laptop) It's going to be beans on toast tonight for dinner or any other toast combination.

Will look in again this evening,

Take care,

Love Karen x

[Skippy]

Hi Karen

Have just got up from my rest and the sun is still shining so am going to go and stand on the doorstep with a coffee in a minute and enjoy it while I can.

One of my friends is hinting at coming over but I don't know if i can handle visitors at the mo - its alright when I go over to them because at least I can leave when I've had enough but not up for the whole people over to see me thing yet.

I'm trying to count my blessings when I get down about the whole thing and realise that I am vry lucky to have recovered so well in such a short space of time. The emotional side is the hardest to cope with but I'm keeping score and its 3 - 0 to me at the moment and I don't intend to start losing to the bad days. I have to realise that before this happened I wasn't in a good mood everyday and its Ok not to be in one everyday now. Just keep smiling and appreciating things to get through.

Beans on toast sounds lovely by the way - what time shall I be over???

You rest up and take it easy - you're like mother hen telling us all to make sure we listen to our bodies etc - now take your own advice and have some you time.

Take care and thank you so much for being here xxx

[Karen]

Hiya,

Well I'm going to have a quiet day today...still in my pj's and still feeling tired and headachey. It's nice to know that I haven't got anything planned, so I don't have to do anything unless I feel up to it!

Just over a week now until I see the Doc.....but these spells of heavy heads and tiredness just drive me nuts! Definetly going to speak to him about anti-depressants, as the longer this goes on, the worse it is to snap out of the gloom. Hopefully, I will feel a little more upbeat later on.

See you later,

Love Karen x

[Skippy]

You rest up and take it easy. I'm feeling Ok today, slowly realising that I didn't always wake up in a brilliant mood so why should I expect to now. Just wish the heavy head and sick in the pit of stomach feelings would leave me - I know I'm being impatient but until they go I can't start to feel 'normal'.

Do you think that you can feel where the coils have been planted? I constantly have a slight pressure on the back of my head where I had my bleed and Paul (hubby) and I were speculating as to whether its the coils in the anuerysm that I can feel pressing on my head. Who knows, something to ask the Doc at my follow up I suppose.

Anyway, I'll let you go and rest. Chill your boots today sweetie and revel in the fact that we are still alive

Take care xxxxx

[Karen]

Hi Sami,

Glad to hear that things aren't too bad with you today! Just finished some ironing (which is a bonus, as didn't think I was even going to get that done today!) eaten some lunch and now taking a rest. Just waiting for the shopping to be delivered.......thank God for the internet!

Yes, I think that I can feel where I have the coils......some sort of sensation anyway....not all of the time, but it's where I can feel like a heartbeat or pulsing movement. It's a strange feeling....I had my coiling on my posterior communicating artery, so I get the feeling on the right hand side, back of my head. I've also asked the question about this, but so far haven't had it answered. Not sure if anybody else reading this message will be able to answer this for us??

I live down south near Poole, in Dorset and the weather is beginning to look a little dodgy.......apparently we might get the tail end of a hurricane over the next couple of days, but it's definetly starting to get a bit windy. Might see if I can get out in the garden and put a few things away later....jut in case!

Anyway, feeling better than I did first things, which is a bonus!

I forgot to ask you, how's your little girl dealing with everything? I had a warning bleed when my daughter Lauren was probably just a bit older than your's. I know that this time around, it affected Lauren badly, but she has got used to her Mum not being able to do quite as much as she used to. It's made her a lot more independent, but that's not a bad thing. I still feel as though I have a fair way to go with my recovery and could just do with a couple of good months, to give me a much needed boost.

Speak to you soon,

Karen x

[Skippy]

Hi Karen

Glad you're feeling a little more perky than earlier - I've just woken from my nap taken after a little shopping with my best friend of 25 years, Lisa (she's on one of the photos with me).

My coiling/bleed is in the same place as yours only I never had a warning bleed. I have suffered from headaches for a while before though, but they were always at the front. I've asked if there's any connection and apparently there isn't. I get a slight preessure sensation and the odd trickling feeling in that area - its a little worrying but they hae reassured me that its highly unlikley to bleed again - I had two anuerysms together - one had burst and then a smaller one next to it hadn't so they packed them both at the same time.

My little girl, Siobhan, has coped remarkably well. She used to be quite a mummys girl and clingy but when I had my SAH she had to stop in Cornwall with my parents at my aunt and uncles while Daddy had to go home to run our business and I was in hospital. She grew up so quickly and so well it was unbelievable. I've lavished praise on her telling her that she has made Mummy's recovery so much easier by being so brave. She adopted two ducks in cornwall (my aunt and uncle have a small farm type home) and as they weren't wanted on the farm we allowed her to bring them home - ironic really as she wasn't even going to be allowed to have a rabbit for her birthday in April!!!

I feel very upbeat and positive today - if it wasn't for the slight headache then I wouldn't even know that anything was different. My husband seems to think that I have the right kind of mind set to get through and not let the depression win. And as I don't like to lose an argument I know he's probably right.

My step daughter is 18 at the weekend and we're hoping to take her for a meal on Sunday evening so I have something to look forward to this weekend and keep positive for.

Each day is a new beginning and another reason for me to look to the sky and say thank you.

I anticipate the information that Andy has sent me will be at home when I get there this evening too so I have some light reading for this evening - all 42 pages of it!!!!

Take care, Sami xxx

[Karen]

Hi Sami,

Well, I think that you are doing brilliantly! There's no way that I was able to manage shopping at you stage and still can't most days!.......so you are recovering remarkably! Yep, it's brilliant to have some good friends....like you I'm blessed with a couple and it really does help to lift you.

Did you suffer from migraine heads before your SAH?...I did and lots of people that I've spoken to also used to get migraines. They reckon there's no connection, but it makes me wonder.

What a pretty name your daughter has......she sounds as though she coped brilliantly.......kids certainly make you keep going! Two ducks now, as well to look after.....do you live in the country? I love Cornwall, we had a holiday there just before I was ill, such a beautiful place.

After a SAH, you certainly do take time to listen to the birds and smell the flowers etc.....makes you appreciate lifes small things a whole lot more!

Glad that you've had a good day. I'm feeling a bit better now also, which is good. Enjoy your reading!

Take care,

Love Karen x

[andyp]

Hi sami-just wondered if the wadge of stuff had arrived today?

How many weeks are you Post SAH??

I Looking at your posts it seems like 5..if so i am absolutely amazed at your progress!

I thought i did well to get back working at 12 weeks but you are well ahead of me.

Youth does help though..i think a lot of older people were zonked out for months!!!

Just don't overdo things though!

Do you have a favourite form of exercise?

I got myself swimming after about 4 weeks..very gradually!!!

What is the business that you run then?? interested to know.

I work for Hampshire County Council managing a Highways Maintenance Office ..And we are shorty about to start Winter Maintenance (posh way of saying salting the roads)..It still seems to early and hot for winter!! I bet you get snow and ice more where you are!!!

Anyway all the best for now...Have a great meal Saturday ..and accentuate the positive !!!

Best Wishes

Andy P

x