andyp

This is a quick message to all those who post on this site and were at the meeting in Lambeth a few weeks ago..It was great to meet you guys and interesting to see that we had a lot in common in our experience of SAH!

I thought that Alison had done a brilliant job of pulling together around 30 different viewpoints and sensitively compiling the various chapters.

I am sure that the book will greatly help those who are struggling out there for information.

I met up with several contributors and their other halves including Dave, Wendy and Rosie.

If you post to this site please do reply and keep in touch!

Best wishes

Andy P

Hi Pam-that throws a slightly different slant on it.

I would ask what are your employers policies on being referred to OHU?

Ours are I think now 6 days in a year-although there is some degree of flexibility depending on circumstances.

From what you are saying you have not taken excessive sick leave.

I also think you may have a right to see your personal file for yourself?

I think I would still comply with the request-after all you have nothing to hide!

Have you a union to consult if you need to?

The issue is that your boss has to treat you fairly and not single you out for any different treatment to anyone else-so he had better be damn careful about what he is up to and why ...if he is overstepping the mark!

I would also make sure you document anything that is requested and any background conversation.

Yes-I agree that the stress of this can have an adverse effect and it could be percieved as a bullying approach if it is not clearly explained.

I would look carefully at your employers capability proceedures just to be sure what can and can't be done by them-I think it is worth explaining to your boss the effect it is having on you and see your GP too.

It may at the end be nothing to worry about but better to play on a level field from both sides.

I hope you get it sorted soon

Best wishes

Andy P

Hi Pam-I was looking at your posts and feeling great empathy with your situation.

I was also trying to look at it as a manager -I have had a few medical issues with staff to deal with! Some very genuine and some doubtful.

You shouldn't be worried about going to your Occ Health people because they will probably have to consult your GP on the matter and may ask your permission to access your medical notes.

You have every reason to fully comply with their requests because your situation is 100% genuine!

I am sure that they will realise that a possible weakness plus excessive physical stress can equal a haemourrhage.

If I were in your position ,which I guess I was when I first went back to work, I complied knowing I was right and had my GP and specialist backing me up.

No one is likely to make up such a story and your employer has a duty of care to you as a valued employee.

They have to make reasonable adjustments -and no lifting is reasonable!

I am sure that they will be sensible and actually they will have to be very careful as to what they expect of you-Did you have a return to work Drs note-if so that should have stated no lifting or whatever other adjustments were necessary.

If you are concerned then I would go back to mt GP and let him know.

Anyway-it hasn't happened yet so maybe you are racing ahead with your thoughts??

Best wishes anyway-and try not to fret about it.

Andy P

Hi Donna-I remember back when I was at your stage..and I had lost confidence in myself in many areas.

Going out for the first few times was actually very scary-I felt the buzz of people in crowds frightening and the noise (I was very sensitive-even to the noise of a kettle boiling) of many things was difficult to bear.

It isn't unusual to feel like this.

You have had a real shock to the system don't forget.

Don't worry about being on Citalopram -many people need anti depressants etc after an SAH!

You are quite likely experiencing an aftershock to the events you have had and quite understandably you are worried of a recurrence..but actually you may be less likely to have another than the average person in the street who is walking around with undetected aneurysims!

It may be a long slow road to recovery where self doubt creeps in very often..but you are not unusual in this!

Keep asking questions ..take each day as it comes..listen to your body..set realistic goals...and keep in touch with those of a like mind on this site and at your support group.

You will get through..eventually.

Best wishes

Andy P

Hi Donna-it is still very early days for you-I remember feeling panicky not wanting to be left alone..suddenly bursting into tears at times-even many months later!

It is a traumatic experience..but one you have survived!

I would never pretend it was easy and you will experience a huge emotional range-but you will get better and more able to cope.

Many SAH'ers will have had anti-depressants-that is quite "normal"..the best thing is to get into a local support group if there is one -as you will relate to these people (as we do on this wonderful site!)

Take each day as it comes-listen to your body-talk with others who share your experience.

It is also a very difficult time for spouses and family-they can't quite appreciate what you have gone through-but they are valuable in suporting you through it.Take care

Best wishes

Andy P

Hi Donna,

please can i encourage you to go to the support group??

These are people who will relate to you and will hopefully allay some of your fears.

I found that meeting ad talking with others was a real help-after all who else really understands what you are going through?

This whole thing can make us more anxious..but I will bet that if you make it to one meeting that will break the ice and you will find some help there!

Best wishes

Andy P

Hi-I can relate to what you are experiencing as I had problems 10-12 months after the bleed.

I am not sure if it was triggered by being told by the neuroconsultant how bad things had been but I was awaking at night with panic attacks and my sleep was very poor.

The GP said he half expected it as I had not shown any real sign of shock or depression much earlier on.

I did have some mild anti-depressants ,although to be honest I am not sure if they did a huge amount.

I had a lot of issues which bothered me and it took quite some time for things to get back to "normal".

I actually went for some private counselling and saw a cognitive behaviour specialist before this ..to help me get back to work at 3 months then a more conventonal counsellor about a year later.

I realise now that a lot of this was most definitely a post traumatic stress issue.

Only you know how you truly feel -but I would talk to my GP first about it.

Talking with like minded people does help because you realise that you are not unusual and that there is a light at the end of the tunnel.

The tunnel can at times be a horrible place to be.

Can you go to a local SAH help group??

I found some books helpful but it is a process of coming to terms with what happened to you.

Best wishes

Andy P

Hi Karen-welcome.

I caught the bit about driving..do be careful because I was told no driving for 3 months and I had to tell my insurers.

I voluntarily surrendered my licence and that way it was easier to get it back.

I am pretty sure in the UK the DVLA will insist that you don't drive for 3 months or until your GP says you can.

You may not be insured if anything happens.

It will change your life and I am sure you will re evaluate a lot.

Unpleasant as it is there are good things that will come out of it.

All the best

Andy P

Hi Anne-I went back 3 months after I had the SAH and I struggled.

I was keen to get things "normal" and I was supposedly on a phased return..but once people know you are at work they don't think phased so much and I found I was soon doing more hours.

It was much too soon now..which I realised to my cost.

I had all the emotional stuff to deal with and as you mention the terrible tiredness.

When you feel you want to return be very strict on yourself..don't over do it gradually build it up and if you get too tired ...hold off /go home earlier .

No one really knows how you feel... except you!

I think nearer normallity was probably 15-18 months for me but I wouldn't have stayed off too long because there is a point when you have to try and get back as the longer you are off contemplating things is a huge shock in itself- I think.

Best wishes

Andy P

Hi Ann-you are quite normal and it does sort of make sense that the neuro consultant will await the 2nd angio result before he sees you.

It is a while to wait but it is highly unlikely that there will be anything to see.

The second angio is really a double check but you will want lots of reassurance because they didn't find anything and in some ways if there is something found you can at least give it a cause,

You are in the best group in terms of recovery.

I am sure I also had a 2nd MRI and I felt quite abandoned waiting many months to get the results.

March will be here soon-so try not to worry!

Best wishes

Andy P

Hi Cal-yes it has repaired itself.

They put mine down to a congenital weakness.

I think as we mentioned before that having had no treatment you are left feeling uncertain about things as there is nothing to show for it as it were!

Don't worry though-it is the best possible outcome.

Best wishes

Andy P

Hi Cal-I was at work 3months after the bleed...too soon!!

Don't let Jim underestimate things -but each to his own.

Listen to your body.

Gradually build up fitness-that can be difficult due to the overwhelming tiredness that it frequently leaves you with!

I chuckled at Jims job title-I thought of someone actually wiring up heads!!

I have coped with help from my wife,family and friends.

This site is excellent and you will find help here from many of the members if you need it.

Someone is sure to have experienced what Jim is going through.

For me the mental issues are more difficult-and getting your head around what nearly happened is a huge issue and for me a fairly constant reminder.

That said-life is for living and it will no doubt cause Jim to re-examine a lot of things in life.

Best wishes

Andy P

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Hi..yes it should have shown up which is why 2 angios are more often done for reassurance-The chances of having another bleed under these circumstances i was told are much less than for the average man on the street.

No aneurism is pobably the best outcome you could hope for..albeit something of a mystery!

Best wishes

Andy P

Hi-I had the same scenario and it makes you wonder because you sort of think there must be something to see that caused this bleed.

The Angio utilises a radio opaque dye so that it should be apparent if there was an aneurism.

The blood may well be around the brain from the prior bleed, but given that the weakness has theoretically healed, then the blood in the arteries is sealed off from that which is still dissipating in the subarachnoid or other intracranial space .

The contrast medium therefore could only appear in the blood surrounding the brain if there was still an haemorrhage.

Hope this makes sense!

Best wishes

Andy P

Hi Kaj-It seems it never rains but it pours sometimes!

That said ....to have no brain damage really is good news!

At least hydrocephalus can be addressed if necessary.But lets hope there isn't any.

Hope all gets bottomed out soon.

Best wishes

Andy P

Hi-I am sorry to hear of your problems Reme.

I can speak from experience of having tegretol and Gabapentin which I currently on for neuralgia.

I had an SAH no cause found in 2004 but the above happened a year later after a lot of dental problems.

I had a bad reaction to Tegretol (I am told 1 in 10 have it ) and my immune system dropped right out after about 3 months..I had a terrible rash and struggled to fight off a flu bug.. I went on to Gabapentin which has after 9 months given me no side effects.

We are all different so don't think what happened to me will affect you!

The above are commonly used for epilepsy treament very successfully.

Are your SAH and the seizures definitely linked or could they be totally seperate??

Best wishes

Andy P

Well-I actually missed it by a day!! (7/11/04)

I was a bit pleased about that cos I thought I would never forget the date!

So after 3 years how do I feel and what has changed?

Well...I think of the SAH every day ..still.

To answer a few other posts I am not the same person that I was 3 years ago and I never will be..and I don't want to be!

I realise something of what is important in life-I have experienced a range of feelings and problems that have I believe made me better for it.

No-I really wouldn't ask to have them again ..but I can see the positives.

I still value my family-I value life -especially my wife and daughter-but I need to show it!

I think I am a little more in touch with myself.

My faith is stronger-I have risen to a few challenges and come through.

Life has still thrown quite a few bum deals to me... but that is often what life is..a series of problems!

This year I managed to study Human Biology with the OU!!! And passed!

My brain still works!

I sometimes find myself doing things out of character..but with a renewed strength that I never had before.

Do I have issues?..You bet I do still!!

I still struggle with lots of things...I found my mum had taken an overdose

about a month ago....not good!!!

I got involved in an Anthony Nolan clinic in the middle of this and could easily have chucked it all out the window..but someone carried me through.

I still question..life, The Universe and everything....

I still want to make a difference.

I still remember the coldness of the angio suite.

..and I have met some great people on this site!

Andy P

Hi,

I guess you are in the Portsmouth area as I am.

I am always amazed at the occasions that a bleed is not diagnosed sooner!

Vomiting/pain/sickness and photosensitivity are all classic symptoms of a bleed!

When I was in QA in 2004 the CT scanner was actually broken .

I can relate to the loud noise and crowds though and the fitness issue will take time-so consider something slow and gentle to ease yourself into things when you feel up to it.

The loss of driving feels like your independance has gone too!

Anyway-welcome to the site -I hope you will find comfort here when you need it and that you will be able to pass your experience on to others!

Best wishes

Andy P

I had to reply to this..and I am only speaking for myself!

The SAH has given me a reason to value life more-to value my family and my friends.

To know what is important and what isn't-what is transient and what lasts.

To examine myself and see where I am lacking.

To reaffirm my faith.

A sort of second chance-I wouldn't want to experience it again -but in a strange way I wouldn't want to turn back the clock.

It has been the hardest time of my life-but enriching in many ways.

I am on a journey and this is a key moment in that journey.

I am still struggling with many issues -life isn't easy-but that journey continues...

Hi Andy and Heather-I saw your interview and thought you both handled it very well-congrats to you both and may things continue to improve.

I thought that Eammon Holmes was a bit of a prat at one point but nothing you can do about that.

It will have certainly raised awareness of this particular complication and in SAH in general.

Anyway -well done to you.

Best wishes

Andy P

Hi Jayne-Welcome!-Like the others have said you are really at a very early stage in your recovery and you are doing really well to be able to get on a keyboard so soon..it all seems a lot to bear...but you will recover!

It must be very difficult for you being a single parent but you will have to really take things easy and listen to your body...rest as much as you need and try one small step at a time.

You will I am sure experience a whole range of emotions -as we all have-but it is quite normal.

The head pains can be weird and the blood which would have surrounded the brain at the time of the bleed does cause the brain to be irritated.

If you have any concerns then i am sure someone here will be able to reassure you.

Best wishes in your recovery

Andy P

Hi Wendy-great name by the way..my wife is a Wendy and yours is very memorable!

Welcome to the site-It would be great to hear of your experience when you feel like it.

I hope you find the site useful (I know you will)

Best wishes

Andy P

Hi Ursula-I am really sorry to hear of your troubles.

Losing the result of an MRI and then 5 months later to tell you that you need some further treatment is very poor.

When you say a remnant has grown-do you mean that the original aneurism has extended ?

I am assuming that you are likely to need some further coiling work.

Surely the neurospecialist should be chasing this up not the GP?

Anyway-at least they have found a cause for the continuing headaches and I hope they can sort you out soon to give you some relief.

All the best

Andy P

Hi Jess-You are one of about 26 then!

I guess you will know that Alison has finished the writing part now and has a manuscript ready.

The plan is that it will be out next year..and she is suggesting a meet in London when that happens for all who took part!

I am sure that will be a blast!

Hope to meet you there!

Best wishes

Andy P

Hi Pat..and Brian,

Thanks for clarifying things on the AVM front..that does answer a few things on this particular situation.

Best wishes to you both

Andy P