Super Mario

Hi Momo

It is difficult to come to terms with losing a chunk of your life. I totally lost about 2 months and only have vague memories of the ensuing 6 months or so. I only know what I have been told by my family and I suspect that has been edited. They have told me some of the funny things I used to say and do though. For example, I said that the staff were poisoning me with the food, then I promptly offered my then 6 year old grandson a piece of cake from my tea that I didn't want.

My advice is to just look forward, the past is over and done. The blessing is, you are still here.

Welcome!

You will find lots of support from this friendly place.

I had a seizure at the time of the SAH and was weaned off the drugs some weeks later.

I have not had any problems since.

Each person is different and only time will tell if the seizures will continue.

I have not got a card. When I asked about one I was told that they had stopped doing them as people lost them. Hubby keeps meaning to make me one with date fitted, where fitted with a contact phone number for the hospital, type and setting but it hasn't appeared as yet.

I have got and carry cards for all my cardiac stents so I would have thought it prudent to have one for the shunt, especially as I travel overseas quite a lot.

IB finished last year unless you were already on it or had an underlying entitlement. It is now ESA and to be called for a medical is more than often the case. Was the form you filled in an IB50?

Look up ESA, if applicable, on the DWP site and it will explain it.

If you were on IB your stamp should have been credited.

Find a Welfare Rights Adviser to explain it to you, look under Welfare Rights in the phone book. If you are in Derbyshire they are based at Ripley and usually attend Dr's surgeries otherwise CAB could help or sometimes your local Law Centre has WRA's. To find an adviser locally you could also look on The Community Legal Assistance site. The link to find an adviser in your area is at the bottom of the page on the left hand side.

IB was not means tested as such but any pension income over a certain amount reduced it, eg £5 for every £10 over the limit. The only exception was if you got DLA HRC, when then you received the full amount

Be wary of the medical as the doctors from ATOS will twist what you say, they will ask catch questions as well. It has been known that their reports say the opposite to what you have told them.

As a note, I have a friend who taught and got her pension from County on ill health grounds. She does not get IB because her pension wipes it out but her stamp is paid.

My shunt is very sensitive to heat and cold and the area still hurts if I lie directly on it. This is 6 years down the line.

I have balance problems and continuous dizziness that are so bad I have to use a walking frame. I walk as if I am drunk all the time unless I have support. I find if I am somewhere where there is movement round me it makes me worse so I don't go anywhere when it is busy because of movement passing by me.

When I travel I have to keep my eyes on a fixed point, the same as when I am walking about, that does help. Also looking left and right makes me so dizzy I find it almost impossible to cross a road and for this reason I am not allowed to drive.

It is as if my brain can't catch up with what my eyes are doing.

I was led to believe that it couldn't have been the SAH that caused this and it was my existing medication that I have taken for years, I was not convinced because prior to the SAH I had no problems.

Reading other peoples experiences, I am now sure that my problems are due to the SAH regardless of what the medics say.

I wouldn't even dare go through a car wash unless fixing on a focal point would help and that I can't say unless I tried it.

Yes she does get high care component. Will that make a difference then?

No, I just wondered if she was getting the correct level of care.

Mum does go out Penny but only when she is hoisted into the wheelchair and took out by either me or my sister etc because she can't push it for herself. Do you think that will make a difference?

That shouldn't make any difference. If I remember rightly there is a question about walking and your mum is unable to do this. DLA is about the help needed, therefore she could in theory be paying someone to take her out.

Just make sure you get the GL 24 form back withing 28 days and you could put further evidence/information to follow later. That is allowed. Also collect as much evidence as you can from GP's and Consultants and make sure that they realise the severity of your mum's problems as often DLA will contact to them.

The appeal process is a long drawn out thing and it may be months before the appeal is held, unless the award is altered on reconsideration. If it is successful all monies will be backdated to the original application.

Please be aware that they can look at the care component as well. A qualified WRA will be able to ascertain if the care award is "safe". In my opinion, and I am not a professional, it should be, but who knows how their minds work

Sadly Karen is right and even people who deserve DLA are having to fight for it.

I personally think you need to find a WRA that is not from the CAB because I have heard that they are in league with DWP, may or may not be true. You do not need legal help but help from an adviser trained in Benefits.

From doing a search for your area your Law Centre has specialist welfare benefits advisers.

http://www.communitylegaladvice.org.uk/en/directory/directorysearch.jsp

I hope to post this link is permitted.

Hi Laura Ring DLA and tell them you are going to appeal and to send you the GL24 form I think it is. You must register your appeal within 28 days of the decision. You need to opt for an oral appeal. Once you have done this you have to prepare a submission.

Really you should have gone straight for appeal as the decision is looked at again as part of the appeal proccess, thus saving time.

You will not get high rate mobility if your mum doesn't go out.

Does she get the care component?

You really need help from a Welfare Rights Adviser. You may find one at the Citizens Advice Bureau or your County or District Council may employ them. Look under Welfare Rights in the phone book. Appeals with the help of a WRA have a much higher chance of success as does an oral appeal.

For someone to help with the appeal if you are finding it difficult to find a WRA you could look on the Community Legal Advice website. There is a link at the bottom of the page on the left to find an adviser in your area. They will only help over the phone if you are eligable for legal aid.

I could direct you to a website for help if you do it yourself but there is a membership fee.

Hope this helps.

I have to rely on public transport because my license was rescinded and the disability the SAH left me with means I will never get it back.

Never mind, I cope.

Hi Sarah, I was also in the Hallamshire, were you under Mr Patel? When I go to OP now I use the tram because of the parking there. Bit of a haul from the uni stop but I can do it very slowly with rests on the way as it is all uphill.

I always start with Paracetamol and if it hasn't eased within 30 mins or so I top them up with Tramadol. Usually works.

I prefer to take the lesser of two evils first knowing I can take the stronger one on top of them if needs be.

Ramipril is a long term medication but it may be changed for an alternative or withdrawn if BP becomes too low with them or within normal limits without them. Be aware that one of the common side effects of Ramipril is a dry tickly cough which can appear after quite a long time on them and it is very annoying.

Sorry can't answer the other part of your question.

I have had 7 angios in total, cerebral and cardiac, they all used the same entry site. It does ache for quite a while afterwards. It feels like deep bruising. If a plug was used in the punctured artery to seal it you can feel a hard lump until it dissolves.

How pig headedand ignorent are your employers, don't they realise that epilepsy stops you from driving.

It appears that they want you there full time and will not allow a gradual return to work, that is very wrong.

I would let them take advice from a doctor, but make sure it is from a specialist who knows about SAH. Non specialists seem to be very limited in their knowledge of "after effects"

Are you in a union, they could help. There is also an adviser at Job Centre Plus who can help with back to work issues including Access to Work where DWP provide and pay for taxis to get you there and home.

If you are going to use the discrimination route, try your local Law Centre, the work on discrimination issues free of charge.

I have always been clumsy but much worse since my SAH. My coordination is "off". I often miss my mug when putting boiling water into it. I have learnt the hard way to keep my other hand away from the mug.

I really think you should see your GP as it is too easy to blame everything on the SAH, there could be an underlying problem because it has appeared so many years later.

I think he then has to apply for ESA after SSP runs out. Your best bet would be to ring the DWP helpline or your local Job Centre plus for advice. If you do it now before they shut it will put your mind at rest for over the weekend.

I always swear by Contact 400. They alleviate all the symptoms. You must check with the pharmacist first though.

Please be aware that for DLA you have to have had the condition for 3 months before you can claim that.

Hi Nightingale.

You may be able to get some income support to help out. Contact the helpline for DWP and they should be able to tell you what you are able to claim. Alternatively try the Citizens Advice Bureau and they should be able to help you with entitlements.

If you want I can direct you to a forum that will also give you general benefits advice. Just pm me.

It may as well be double dutch to me but at least you seem to be making some inroads into the causes of your problems. Often neurological problems can take years to diagnose and I certainly hope this is not the case for you.

Thanks for the links Janet. They make interesting reading.

I had loads of the tests listed, to no avail, and was eventually referred to physio who other than giving me a walking frame did not really help.

My neurosurgeon, in the end, blamed my problems on my heart meds, but I know that is not right because I had been taking them for a few years prior to my SAH and never had any problems at all.

I think that was just a "get out".

I also felt that the powers that be thought I was making my problems with balance and dizziness up. I wish.

I would really like to be "normal" and be able to do all the things I used to before the SAH.

The brain is so complex that no one knows it all, even the experts, and as research continues even more will be learnt.

There is hope yet.

Hi Leo

I also hate the noise at the gym. I blank out and use earplugs. I am benefitting though. Lost inches not weight, my lung capacity has increased and as I also have quite severe coronary heart disease I am hoping it is increasing my heart fitness. I have to use my GTN spray before I do anything though.

Balance problems I also have and it does make the gym interesting, in I go with my walking frame, park it at the side of the equipment I am using and clamber on using my arms and anything I can grab onto to keep me upright. I now do 15 mins on the recline bike, 20 mins on the treadmill, 15 mins on the hand cycle, go round all 6 exercises on what they call the easy line circuit and two lots of 10 at 10 kilo on the abdominal crunch. It has taken me 6 months to increase to this and it takes me about 1 1/2 hours to do my program and in the next few weeks hoping to add another exercise in. Difficult but I manage.

"Where there is a will there is a way"

Hi Vicki The poor vision due to the blood in your mum's eye is called Terson's Syndrome if it is the same as mine was. I was operated on and the blood washed out and this gave me my sight back. I hope it is the same for your mum.

I have a shunt fitted but now, 5 years down the line, it is no longer checked. I have been totally discharged with the instructions that if I get any of the symptoms of shunt failure to go to my local A + E. A fat lot of use that will be methinks.