Happydawn

Hello, Does anyone have a taste problem? Nothing taste good.

Hi

I didn't like a lot of thing after the SAH. I hated tea and coffee. It took weeks of keep trying it before I enjoyed it again. i have never liked the taste of wine since, but it saved me some money.lol

Also i like walnuts and I never liked them before, strange the little things that can change.

Hope it not bothering you too much.

Take care

Dawn

Hello,

I just had an SAH, non aneurysm on May 2. Although I am somewhat medically competent, I am feeling a little overwhelmed right now. I am hoping someone can help me with a time frame for recovery? My doctors say I can go back to work on May 24, but I feel emotionally ragged, am having excruciating back pain (which all the nurses thought was unusual) and I feel totally unready to return to work in about one week. Is this normal? Should I be feeling better? The headaches are better, but the back and leg pain are disabling.

I just want to make sure I am not just being a wimp. I am scared to death to be dependent on pain pills.

Thank you if any body has advice.

Carolyn

HI

Everyone is different and only go can say how you are feeling. I took months to go back to work and had lots of pain in my head and leg. It took time for this pain to go. So just take each day as it comes and your not a wimp.

Take care

DAwn

It would be interesting to know how many of you have suffered from fatigue since having the SAH. You can just say a couple of words, like "I do or I don't" and say what stage you are at post SAH. It can be as brief as you want it to be or you can say how much of an impact that the fatigue has had on your day to day life...... Thank you, Karen x

I do suffer fatigue,but has got better with time. 5 years post SAH

Just curious about the sizes of people annies and how many you have and which 1 if any burst etc etc

sorry for been nosy:oops:

donna

I have 2 one coiled which was 5mm on the anterior communicating artery and one untreated 2mm not sure where

I have two also. one on left which is small and one on the right half coiled. Not sure of sizes

Hope all goes well Karen xxx

Hope it goes well. I'm in some international study and it will be another 3 years before I go for the MRI again. It is always nerve racking as you want good results.

Hi everyone,

Wondering if blood pressure is considered a cause for an SAH or is it just something to be monitored after an SAH so as not to stress the body systems further? Does everyone who has an SAH have high blood pressure generally?

I was asked to monitor my BP for a few weeks after my PM-NASAH and it would be high sometimes but generally it was really good. I was fitted with a 24 hour holster and wore it while I had returned to work. It was a very stressful time, I wasn't feeling well, my brain was not working, and my boss had an important meeting that day in which I had to provide some information which we didn't have ready yet. Very stressful but the BP report came back ok. In fact the BP report said it was good. However, my GP said the neurologist might want my BP lower than the general 'normal' because I've had a brain bleed.

Is this a 'what comes first, the chicken or the egg' question?

Sandi K.

When I have attended meetings with Consultants in Neuro, they seem to believe there is a link with b/p. I have a b/p monitor and find it good to check for myself. My GP check it every six months as recommended. I never suffered with b/p before the SAH it was always good when it was checked. My b/p was higher after the SAH and I required b/p tablets for years until know when its about back to what it was before the b/h. Hope that helps

Can anyone help with a possible epilepsy question please?

I have an appointment on Wednesday with a neurologist regarding possible epilepsy. I am very worried about this as I don't want to lose my driving licence (on top of all the other stress). Can any one tell me how the test is carried out and will it say I definitely do/don't have epilepsy?

I do not have full on fits, I fall over a lot (I think this is related to my balance?) and am not always sure how I fell and quite often 'fade out', where I think I have just been daydreaming and am surprised that people are looking at me, waiting for a response from me. I am sure this doesn't last more than a few seconds? I am almost 3yrs post SAH and have always thought these falls & daydreaming episodes are just par for the course after SAH. I would be really grateful to hear if anyone else has experienced the same without being diagnosed with epilepsy.

Thank you

Michelle

Hi

I know exactly how you are feeling as I went through the same thing a few years ago. I had strange headaches and then my voice would go. I went to a Neurologist as my consultant thought it was a form of epilepsy. I then went for a EEG at the hospital and was later diagnosed with complex partial epilepsy. The EEG is a cap with electrodes on it and measures your brain activities as far as I know. It doesnt hurt. It sound like you have absenses as well. Prepare yourself as you could well lose you licence for a while. You can try some of the drugs available to correct this. I'm able to drive again and I don't seem to have episodes at the moment. I don't work though and I also try to keep my stress levels in check. I hope it goes well and will be think of you

Dawn

Hi All,

Some of you who were lucky enough to have critical illness insurance will hopefully already have claimed on that insurance. You may also be able to claim on a personal accident policy, you may have bought it yourself, or it may be one of your employment benefits like mine is.

The upshot is that dependent on the policy wording of your own particular insurer, you may well be able to claim against it in respect of your SAH. The important point is that the haemorrhage is spontaneous, and causes physical damage (ie burst artery), these points allow you to describe it as accidental injury rather than illness.

This is not true with all insurers, some of them have cottoned on and incorporated exlcusions into the policy wording, examples are "excluding injury attributable to Cerebral vascular accident", this catergorically takes it out, another exclusion which may still allow wiggle room is "excluding natural causes".

Not all insurers have these exclusions, from my research I would estimate that somewhere in the region of 30% of them don't have the exclusions and as such should be open for a claim. Don't expect an easy ride, they will fight it, however without a suitable exclusion, you should be able to succesfully make a claim.

Do please give look out your policy, I am proceeding with mine, the claim should be worth 3 times annual salary, so it's worth a fair bit of effort on your part.

If anyone needs any specific advise I am happy to help.

Regards

Adam

PS, I've spent 25 years working in insurance, at least the tedium has finally paid off

Hi

I have claimed a critcal illness insurance and I also work for the NHS at the time. Do you think that it would only cover me if it happened at work?

Thanks

Dawn:shock:

I don't think that we can be 100% better, having a SAH is quite traumatic.

When I had my SAH in 2008 I was left with many problems, ie balance, nausea and a weak left leg, I just had to get on with it but I knew I can never be the same person, before the SAH, I was fairly active in everything, after the SAH I remember how people use to see me when I was outside and felt sorry for me because after 10 minutes or so I would be extremely tired. I hardly had time to get over the first SAH then my second surgery last year really bought me down both physically and mentally, I still suffer from left side weakness on my leg and also my arm now, before the second operation I could at least walk but now I have to use a wheelchair if I am to go for longer periods outside.

I have to agree with Maggie, it does take a lot of courage to accept the changes, I know I had to twice over, I keep giving myself talks about staying positive but I have to be honest, it's not very easy, I don't like my new life at the moment, I am grateful to be here but the quality of life for me has changed drastically.

Sorry to be honest about it, but that's how it is in my life but on the other hand it may not be for some others, I say embrace the new you and come to terms with it as I am dearly trying to do so with mine.

We are all survivors and unique.

The problem with this condition is there is nothing visually to see and that what people go on, that you look alright. I think you get better each day and everybodies recovery is different, it depends on how bad your SAH was. These stupid tests they do have nothing to do with your emotional state and at the end of the day its' not like breaking a limb. I was advised to have the happy pills as well and I refused. I didn't get counselling either. Just enjoy every day.

Angela said:

It took me a full year to get back to work. I work with care of the elderly which is very heavy and the ward that i work in is very fast paced.

 

I did'nt think that i would ever be able to return it. when time came for me to try and get back to work my employers were very hesitant on me going back into the wards But it was what i wanted. they offered to train me up for admin work, which would be lighter

I asked them to give me a chance to try the ward again.

 

I was sent to occy health, numerous times and they agreed i could return but it would need to be a phased return and that i would only work 4 days a week. I dropped my hours to 25 doing 6 n a quarter hrs per day

 

I have managed to keep working, somedays i struggle if my shifts hectic, i'm tired and my head bangs,i try to slower the pace

I usually have to rest up when i get home

Take care x

Well done for managing to return to work. Don't try and do too much.

Take Care

HI

Social security dept are ridiculous!! They make you do all these physical moves but they don't ask you about your emotiional state, or your memory. When most people struggle remembering things and I would think that, to work you need to be able to know what your doing. This does not seem to matter to them and theres too many people with emotional problems after SAH not being addressed at all. It make me so sad that people are put under so much unnecesssary pressure. Hope you get sorted soon:frown:

winter said:

Good thread going here! I went back to work WAY too soon. The neuro surgeon told me I needed to stay home for at least a month, maybe longer. Neurologist told me, at 7 weeks, I could go back to work - see how it goes! So I did. I did go back slowly, a couple hours every other day. Did that for a few weeks then added more days and hours fairly quickly.

 

I'm a massage therapist and the constant leaning over and exerting pressure was doing me in. I felt ok as I was working, but would come home shattered, massive headaches and would sleep for hours. I was very emotional and became more depressed as I seemed to be digressing. About 2 months of that and our receptionist was fired and I took her position. Headaches got better and the fatigue also lessened somewhat. Increased my hours once again, but that proved to be too much as well. Using my brain, multitasking was almost harder than the physical work I'd been doing! Cut my hours back to about 20 a week and improvements were better.

 

Did this until end of Dec. when I was laid off! Now looking for another job - has been a struggle and I feel as though I've slipped backward once again. Confidence is not there, but I'm working on it. I no longer have health insurance and am not getting healthcare as needed! I am receiving unemployment comp. and this is a help, but am struggling financially, as many of us are. I know things will get better eventually and just have to keep at it.

 

The previous posts have been encouraging and well written. We can only do what we are able and must come to terms with it and move forward with what we are capable of, whatever that is! Our health must always come first. Good for all of us for the decisions we have made to stay well

Carolyn

It seems that finance comes in the way of your health and its like walking a tight rope at times. I do hope that you can get a balance with work and finance.I know it can be a struggle at times:frown:

I had to quite my old job, i worked 50 to 70 hours a week, just can't do it after the sah, i used to be a landscaper for 14 years prior, i am going back to that, i can set my own hours etc. what gets me is the fatigue, just don't have the stamenia like i used to. I wish you the best, it takes time, i am at 8.5 months, and the headaches are finally going away, thank GOD for that!!!! The key is just do what you can, don't push yourself!!!! take care chris

HI I think your right about fatigue, no-one warns you that it goes on for years to come. You can become more able as time goes by, but you still have to pace yourself as it creaps up on you.

I had a headache non stop for 5 months and it took two days to realise it had gone. I only drink de-caff drinks and I rarely have headache know.

Just take your time it's early days

Forgive me for writing but I was hoping for some more reassurance.

My wife continues to improve. It's been 7 weeks since the SAH and coiling.

She's up all day, uses the computer, goes shopping, and takes care of our daughter - all the normal everyday things. Gets a bit of pressure on the top of her head when she's tired but apart from that she's completely normal, she takes about two paracetamol a day.

The only subtle change I've noticed is that she less patient than before the SAH and gets frustrated easier. This we can cope with as everyone used to say she was so laid back about everything so now she's just considered as normal

I on the other am a total nervous wreck. Still can't leave her for the fear of something happening. I arrange for someone to be with her constantly when I'm not there, be it her Mum or a friend. I am so scared!!!!

I wake up in the night just thinking about it and to check she's OK.

Every noise in the house panics me and I shout her name to check she's OK.

What I said earlier is possibly wrong. She understands my fears and need to have someone with her, so I guess she has still got the patience of a saint!!!

I'm constantly looking on the net for reassurance although sometimes the amount I read just puts the fear of god in me!! I want someone to say she's going to continue to get better, she's going have a normal life expectancy and everything will be OK. Although I know this and even the Specialist Nurse told me this, I still want to hear it all of the time.

I'm desperate for her 1st MRI/Angio to take place. just so I know all is OK with the coil (7mm rupture/puncture on the right anterior communicating artery - SAH grade 2).

I try to stay positive and I'm fine when I'm with her but when I'm not, I'm so scared.

My problem is our 3 year old daughter and I was with her when it happened. We are good and try to make light of it all with my daughter now who seems to fine with everything now and even does impressions of Mummy throwing up all over Daddy but I still re-live every day. I even get dark thoughts of life without her and then I have to kick myself out of it again. I hate it when that happens.

I worry about the coiling. Is it OK, will it last? has it a scar now so it's safer??

My wife on the other hand has such a strong positive attitude. She's of the opinion she’s here with no deficits/problems, she got through it and she can't worry constantly about what could happen and wants to get on with life.

Life is wonderful with her and my daughter right now but I sometimes have this terrible guilt in me that I shouldn't take any of this for granted and must always remember what happened and treasure her because something can take it all away again and this just stabs me in the heart all of the time. I don't seem to be able to accept it the way my wife has.

As you can guess, I love her so much and we have had so much bad luck these last 6 months. In Sept last year I too was rushed into hospital and diagnosed with a condition called ITP. Platelet count down to 2 (should be 150 to 400), haemorrhaging and ended up in and out of hospital and on lots of steroids and a splenectomy. Just got our lives back on track and was being tapered of the steroids when this happened. But hey - we're still here!!!

Sorry for going on XXXXXX

I.m a SAH survivor for five years. My husband found it very difficult at the begin and I would text him regular throughout the day to reassure him I was fine.

He still worries but not as much these days, but it still remains at the back of his mind.

I can understand that he feels like that and maybe its a natural reaction to a terrible event.

Just take one day at a time and enjoy being together.

Take is a great healer.

I think your wife is recovering really well.

agnes m said:

I went back to work on rehab hours but felt like a fish out of water that was in May 2010. Still feel like a fish out of water so im back off at present. I used to work 37 hrs then after 3 months of rehab i changed to 30 but find that is too much because im so tired and crabbit. Its not easy and people dont understand.

When I first went back to work I was shocked as to how much work I did. Getting back into doing all these tasks was difficult. Keeping focused on things was difficult and when the phone rang I would say the first thing that came into my head. I would answer the call and mention the wrong depot. Then apologise and remember were I worked.lol

I struggled with lights and then epilepsy. I was finished on ill-health about a year from starting back.

I'm glad that I was as I just couldn't keep doing this job everyday as so tired.

I love my voluntary work with the EPP through the NHS and the Health Peer Mentoring with NHS

So don't beat yourself up like I used to do. It's only a job after all.

Take care

Dawn, I've been wondering the same but was afraid to ask.

I'm still new, next week will be three months. I sure hope to get back full time but don't know if I'll ever juggle the same load again. My boss is offering to get me two assistants, one technical (I'm an I.T. Manager) and one to help with dispatch/schedules and budget. I'm very lucky. I'm just beginning to accept this whole thing and give up some control. I have to, I can't keep up.

I'm part time right now and have applied for insurance benefits.

Sandi K.

HI, its great to hear that you will be getting help. Use the help as much as you can and don't over do it at first.

There are a lot of people who have been able to get back into work, but most are really tired at the end of the day. Pace yourself and get as much sleep as you can before going back.

You will enjoy getting back with friends.

I wish you well.

Let me know how things go.

Lin-lin said:

I do not think it reflects negatively upon anyone if they have been unable to return to work. It is rather an acknowledgement of how our conditions make the workplace challenging.

I resigned from my job six months after my sah and commenced voluntary work at the CAB two months after that.

 

Voluntary work prepares a person for the workplace. Athletes don’t turn up for a race without any preparation and it is the same principle for a person who is off work. We need to build up our stamina and get ‘work fit.’

 

Next week, I commence further voluntary work with the Shaw Trust who are a charity who help people with incapacities/ disabilities return to work.

 

Giving up work and not returning to the same job, is not a weakness on my part. It is just me adapting to new circumstances. I look upon it as nothing more than that.

It is different for us who are not returning to the same job. In returning to the same job, an employer must make reasonable adjustments.

 

When searching for a job whilst suffering with a condition, we are competing against healthy people. Employers, by and large, prefer to employ healthy people, so it is all the more difficult.

It is for this reason that I am going to request help from the Shaw Trust. They are the ‘experts’ in dealing with sick/ disabled unemployed people. Their entire task is to find work for sick/ disabled people and help alleviate some of the difficulties we face.

 

I agree with Louise, who asked you not to beat yourself up about not returning to work.

Some people have returned to work quickly and how fantastic for them, but I do not compare myself with anyone.

 

Similarly with those who cannot return to work. I am pleased they have made the right decision for them and hope they have secured the quality of life they deserve.

After doing voluntary work for a while, you will have a better understanding of what you can and cannot do; and it will become clear whether paid work is realistic for you and if so, what type of work and hours.

 

It is a massive achievement that you have commenced voluntary work and what worthwhile projects you have chosen. In the short term, just try to maintain what you are doing, and in a few months, either increase or decrease your hours; see how you feel.

Lynne

Thankyou for being so positive

This is a timely thread as I'm starting a phased return to work on Monday, 3 months since my craniotomy. I'll be doing 2 hours a day to start and building up to 37 over 12 weeks if I can.

I work for a very large IT company so fortunately can work from home during this period and for 4 out of 5 days once full time. I think it's achievable but I won't really know until I try. The rehab plan can be adjusted if I struggle so I'm really lucky in that respect.

If it was up to me I'd stay off longer but unfortunately there is a big round of redundancies coming soon and it may help my case to be seen to be on the road back to work.

I hope you are successful in returning to work, but just make sure you health doesn't suffer. I like you couldn't wait to get back to work and also the financial side played on my mind.

Take it slowly as you can over do things at first and become really tired.

Let me know how you go on.

KelBel said:

Hiya

I went back to work 11 weeks after being coiled! I now cannot believe I went back so soon, but was being told at the time, by friends, family and my GP that I needed to get back to normal!?!... yeah ok…

My work were going to allow me to do a 2-week phased return ( )

Week 1 – Mon to Fri 9 til 1

Week 2 – Mon to Fri 9 til 3

Week 3 – back to full time

I didn’t think that would be possible… what I did manage to talk them round to was;

Week 1 – Mon to Weds 9 til 1, Thurs & Fri holiday

Week 2 – Mon to Thurs 9 til 3, Fri holiday

Week 3 – Mon to Weds 9 til 5.15, Thurs & Fri holiday

Week 4 - Mon to Thurs 9 til 5.15, Fri holiday

I then continued to take a days holiday each week for a number of weeks.

 

I struggled with the full-time hours and had migraine aura daily, and had to sleep an hour or two once I got home before I could even think about cooking dinner etc…It took me about 7 months post SAH to get back to the gym too.

 

I also struggled with a difficult colleague for 2 months after my return to work. He was very difficult about my need to have the blinds shut, because of light sensitivity, as it ‘could’ make him depressed not having natural light. The fact that it was highly likely that I ‘would’ get a migraine with the blinds open and be unable to work at all didn’t click. It ended in a mediation meeting with 3 managers present, and didn’t really resolve anything. I had to try to keep some of the blinds open. Like that helps… (yes I am still bitter about it all, even though he has left the company!).

 

I did get a fit note from my GP ay the end of May to reduce my daily hours by 1 hr per day for the month of June, but it didn’t make that much difference, just to my pay! So I went back to full time…

I still struggle a little with doing everything, but I live alone and have no kids or animals so my flat doesn’t get too untidy (luckily).

Kel

HI

I had a lot of problems with the colleages I worked with. I thought they would be a little more acommodating, but no they just sniped all the time. I struggled with the flourescent lights and I would ask if we could switch them off as we had a lot of natural light from the window. As soon as I left the room to do something they switched them back on and moan.

I also struggled to walk and they reported me for taking my time at going to occup health for a blood pressure check. People are unbelievable. They continued bullying until I left as the stress and my health were struggling.I feel sorry for them as the are going nowhere stuck doing the same thing.

I'm enjoying doing my voluntry work as a EPP tutor and now Health Peer Mentor.

I have meet some wonderful people that have encouraged me to do more and I would not have met them if I had struggled on with work. I'm enjoying seeing people come back to life and they have been on the Expert Patient programme by NHS

Take Care

RB-R said:

Hiya Everyone,

I went back to work 3months after SAH it was way TOO early, i only did thursday and friday mornings, im a senior hair stylist, it requires standing and talking to clients for about four hrs, way too much!!! I used to come home and crash for days, it would put me back in bed untill i hasd to go back to work. I was coming home to four kids and a husband, they have been great doing all the jobs around the house.

 

Now 7months since SAH, im still doing the same hrs, i dont crash every time, but still very exhasted after work I still can't do much else, and would'nt increase hrs yet. I used to work 2 12 hr days and 1 8hr day before SAH and there is no way i could do that now:crazy:

 

Hopefully this will improve as just like others has said i need it too because of the money part of it !!! I am getting more energy than before but will have my off days when i just cant do a thing, not even think straight:crazy:

You went back early. When i get back to work i would be in bed early and all i seem to do is work and bed. i felt that my life had been saved for more than that.

it interesting to see how other people cope with work.

I returned to work after 7 months on a phased return after about 6 months had worked up 30 hours but it was too much for me so gradually reduced my hours to 20. Financially I'm out of pocket but I think I have my work/life balance just about right now.

Well done. I tried a phased back to work, which was good until i had further medical problems. Its good to hear about how other people have got on.

This is a very interesting thread! At first I was sure I'd be right back at work within a couple of months. How wrong was I! But like Lynne, I've come to understand that it doesn't make me weak. It's just the way it is. I might regain some energy, I might always stay like this, but at least I know I'm better than I was 6 months ago.

Having the SAH made me wake up and realise that I was letting the bills dictate what I did for a living rather than making the bills fit around me.... I am determined to never go back to working like I was before. We might be poor, but at least I'm not so stressed!

I went back to work part time five months after my SAH.It wasn't a good idea as mentally i was not strong enough to put up with other people and there misconseptions. i found it much to stress full. i was finished on ill health as i was in and out of hospital with further problems. i not bother about work as much as im enjoying my volunteering. You do get stronger with time.

Hi again Dawn.

Incapacity benefit has been replaced by Employment Support Allowance. They will no longer consider new claims for Incapacity. The ESA has a different list of rules for enabling anyone to qualify. I myself have an appeal in progress for it , and I believe Gill is about to do so too. It's an absolute nightmre. They say I'm not ill enough to recieve any benefits, but not well enough to return to driving yet!

Sally x

Not heard about ESA. I know it was difficult at first to receive payments. I have had to go back at times to be re-accessed, but I had more health problems later so I think they just gave up. I got partial epilepsy later,then can't manage to treat.photophobia which makes me struggle in building with strong lights and I can't stay on a computer for long. I have glasses to help me cope better with lights but it still hurts.

Keep plugging away at them and also your GP for support.

Hope you can get a positive results soon, No one needs that stress as well

Hi Merrill had her sah 23 months ago and has never returned to work she had 2 annis 1 clipped and 1 coiled and then a shunt fitted i think for some people recovery takes longer than other and for some complete recovery does'nt happen, but i heard a story on the radio about a lady who had an sah her husband was getting a record played for her and she had that day just returned to work 9 years later, so the moral must be never give up. Best wishes Rod

Thanks for that rod. I'm still hopeful.

But i just wanted to know how many other people have struggled to get back to work.