Another problem

Hi have not been on for a while, the person i am going to talk about has N.E.A.D they are still the same the attacks she has been this way now for eight years, she was diagnosed last year with joint hypermobility, which does not help when she twists during seizures, this has done more than usual damage to her joints, she has now also been told she has fybromyalgia ( chronic widespread pain and fatigue ) she is in constant pain, tired, even to the touch of her skin it is painful, now we have been told for the past how many years N.E.A.D is all in your mind you do not come to any harm and there are no long term effects to having it so someone please tell me why the pain, why the damage to joints muscles nerves, is that all in your head as well, and all they can offer are medication to make you pain free but a zombie like state, physio which you can not do because of pain and talking, talking about how your pain makes you feel, how not having a social life is, and not sleeping, and how people in general do not understand, its just one big vicious circle you can not get out of....

Well said.

hi misty,
i was at an appointment on thrusday with my family and advocate, and they said the same thing, i will not do any damage or harm to myself in an attack, i said the same as you said, why am i in pain and why do i hurt in these places, the woman just looked at me and shrugged her shoulders and said i dont suffer from NEAD ok, then carried on talking to her assisstant who was in on the meeting. i came out of the meeting feeling more angery and let down than i did before the meeting. garry

Hi Garry
It's Marie here. I have developed another problem in my vision where things become blurred and I can't see words clearly. With having these attacks for over 2 years now is this related to the nead. The attacks are still happening every day. Have you or anyone else on this site having the same problem.


Thanks

Hi Gary and Marie and Misty,

I can totally relate I have had NEAD for nearly 3 years now and have both seizures and blackouts every single day - the newest symptom I have had in the past five days is after a blackout I have a period of temporary blindness of between 10 to 30 minutes and this has been happening every single day - after the period of temporary blindness I have blurred and double vision which has not recovered yet. I am going to see my GP hopefully this week as I still need results from my recent EEG (this is the second EEG I have had in two years) but feel that I will basically be going round and round in a vicious circle as I also have fibromyalgia, disc protrusion in my back which will never recover, shattered knee caps, osteoarthritis and severe arthritis everywhere else.

I did ask another question on a different forum on this website to ask because of the temporary blindness will I be registered partially sighted as I also have light sensitivity.

Hi Becky
The blurred vision has only started happening within the last month or to but I never gave it any thought. I didn't put it down to the Nead until I read about some people were the same. I do have epilepsy and now have developed Nead. Consultants told me nead doesn't register on an EEG whereas epilepsy does. I was in 3 hospitals one after the other the last one videoed me,scans and EEGs, the first EEG I had a nead attack in it and pulled all the wires out of my head, they did a second one and they glued the wires to my head I took another attack and pulled some of the wires out. When my consultant looked at all the tests he came and told me it was nead. I am going to get in touch with my epilepsy nurse and see if she can tell me about my vision and see if this is to do with nead. Having these attacks are disrupting my life and not for the good.

Hi,
It amazes me that people cannot understand that falling down and hitting the floor several times a day Is going to hurt.
My son has joint hypermobility also and when blacking out he more often than not disslocates one or more joints. Your body is not designed for this kind of treatment. He is finding it harder and harder to relocate things himself, but is terrified of people and if anyone touches him he blacks out.He is only 23 and in pain most of the time. He also has light sensitivity especially after a passout, and eyesight problems and memory problems

Only someone living with this condition or a carer seems to fully appreciate the problems

I totally agree with you nobody knows what it is like having this condition. They can get on with their lives as normal but the likes of us have to live with it. all people round a bout me are getting on planes can go different places and I have to sit in the house. Even taking a shower or washing my hair brings on attacks and because they say its psychological I can't figure out what the connection is. I have. Attended different psychologists and still am to see if anything has happened earlier in my life that could cause these I could come out of all this counselling still taking these because I am not coping really well. It is making my depression worse.

I have seen my GP and had the results of my EEG and they have come back as possible water or blood on the brain however the GP has also told me that once I have this corrected that because I already have NEAD that the blackouts and blindness will still continue for the rest of my life

So I am back to square one and feel that I am getting no answers whatsoever.

Because I have epilepsy I have a neurologist and a specialist epilepsy nurse. They had changed my epileptic meds shortly after this these attacks started. My neuro sent me to Belfast city hospital were another neuro seen an attack and kept me in. I was sent over to the royal hospital iin Belfast were after doing different tests told me I had nead. I came out of hospital knowing wat was wrong with me after 2 weeks. My neuro was very thorough he even checked if it started of as a seizure and then became nead. I had 2 EEG and that was the result I was given. He explained everything to me about nead. Sometimes it goes away on its own but it is psychological there is no meds for this. I am currently going down this route cos I have to try and get rid of these cos I don't have much of a life. Two years on I am still taking them but it is a case of ruling out things that have happened in my life. My epilepsy nurse even got me moved up the waiting lists I was at the end of my rope and my depression didn't help matters. Maybe your doc might be right or try getting sec opinion. This is to let u no how mine was diagnosed I was even videoed in the attacks. Do you think yourself it might be nead. The only hard bit would be them doing another EEG when they have already done that. Maybe you could mention this site and ask if its possible it could be nead. I don't know if me telling you how mine was diagnosed helps. But I do hope u can get things sorted. If it turns out to be nead I would advise you to start seeing counsellors straight away. All the best

Hi Marie, thanks for your answer - my neurologist has already told me that I have NEAD and have had it for nearly three years now it just seems to be getting worse and I have had another EEG which shows there is something on the brain activity which my GP thinks could be water on the brain and I might need to have a shunt in my lumbar region.

Hi Becky
Has your neuro or anyone else suggested seeing psychologists. I got and appointment to receive cognitive behaviour therapy but it didn't work for me. The attacks were bad so while I was waiting on getting appointments I went privately. With having depression I have low self esteem so am now seeing a community psychiatric nurse thinking maybe this could be the reason for the attacks. Counsellors seem to have a way of getting things out of you that could have happened from being a child which is what has happened to me. I am now seeing a different counsellor in relation to what happened me when I was younger and she is brilliant I can open up to her no problem which is what you need if its find out answers. If this new person im seeing doesn't get rid of these then I have to try something else. Next would be bereavement. I lost my mum 16 years ago I know that sounds a long time but the problems can go that far back and shes the only person I want. I was with her when she died and I was 6 mths pregnant with my second child so she wouldn't let me help her. I was told near 2 years later my second child had autism and learning difficulties so my life revolved by having to teach her everyday at home before she was even 2. Getting her into the right schools and the right help. So they aare now saying I haven't had time to grieve for her properly. If after all that these haven't gone away I wont know what to do. It probably seems a long route it is and I hope its worth it cos what im doing now is not living. I still would suggest this because it might help and don't give up. I Hope you get sorted with your other problem so you can try and get back to normal. All the best and take care of yourself.

Hi Marie,

thanks for answering so promptly - you sound very similar to me because I have now been referred to a psychologist and had my first appointment last Monday. It was discussed that when I told him I was married before at least 20 years ago that I never achieved closure from that relationship. The reason for this is I went through an abusive physical and emotional relationship which had a significant impact on me up to the point that I am still having nightmares about this relationship. My psychologist says that there is still the 19 year old girl inside me that still feels guilty and blaming myself for this past relationship when it isn't my fault.

With regards to the other medical problem I got some communication from my GP saying that the results for the EEG I had were wrong because he was sent somebody else's report and my results came back as normal which has upset me because I thought I had a solution for my blackouts and temporary blindness and my GP says it is most probably associated with my non-epileptic seizures and I will probably have them for the rest of my life.

Hopefully this psychologist might help me manage the seizures, blackouts and possibly temporary blindness however am going to see opticians this Tuesday to see if there are any other problems with my eyes but probably not and probably another thing associated with NEAD.

Hi Becky
I am glad that you are starting to see a psychologist and this helps you now and hope that these problems get sorted out. My problems went way back til I was 14 yrs of age and am now 48. I am seeing a counsellor that specialises in particular areas and helps me deal with this problem before I move on to another for the loss of my mother and that was 16 yrs ago. They think I might not have grieved for her properly. I was 6mths pregnant when she died, I was going through changes in my epileptic meds and when I had my child before she was 2 was diagnosed with learning difficulties. I had to do work in the house with her, take her to speech and language therapy and make sure she was in the right schools. I have been told things will get worse before they get better
and this is true. It is a long process but I hope in the end I can get out and about again. If you're psychologist doesn't work for you don't give up stick at it. Try different counsellors til you find ones that suit your needs. My doc told me of ones to try.

I hope you can get all worked out.

I had told you I was seeing a counsellor for help with my nead and for you to stick it out to you get the right one. The girl.   I am seeing now is great we seem hopefully to have found out what the problem is and we are dealing with it. After just over 2 years I am getting days were I am having no attacks at all. It can be hard work but if it  gets rid of these attacks it is a good thing. I hope you get to the same position that I am at and wish you all the best.

hi all,
sorry for not getting back to you all with some answers, but iv not been to good myself,
tried going on holiday, had attack, losted the holiday memory,
been taken to hospital after another which my partner said was differant form last few, so yes these siezure do change with new things coiming, this time the paramedic said my blood pressure was so high i could have had a stroke at any second,
am now in a battle with the DWP, as they are saying im fit for work, my Dr keeps giveing me a sick note saying im (NOT FIT FOR WORK), have had meetings with 2 back to work departments, now on the 3rd back to work placement program after the others said im not able to work due to heaalth and safty issues, will let you all know how it goes, keep safe garry

Hi, I'm new here. I have been dealing with NEAD for a few months now. I have been seeing a neuropsychologist. I've only been a few times, but I feel like I'm doing something. I have hundreds of small, fairly peaceful seizures a day. They consist of starring, blinking, and rolling my eyes back in my head. Many times my friends, or even I don't notice them, but lately I have been having convulsions. I am only fourteen and trying to get through school while dealing with this and other health problems. I'm hoping for things to get better soon. I have very bad joints. They swell, get stiff, and cause me pain almost constantly. No one thinks that it's my nead but I am making it worse during attacks. I am still trying to tell my friends. They say it's really scary to watch.

hi findmagic,
sorry to hear you are a new suffer, and i hope this site will help you as it has helped a lot of others and we are all here for you and your family at any time,
their seem to be a lot of things that can course these attacks, from trormatic events, to stress, and lots of other things, the hardest thing to find, is the socalled trigger, hopefully you have a good Dr and they will help you, and send you to the right places to get sorted, these attacks can change each time and most proberly will, as for telling you friends, just tell them when you feel up to it, a good friend will under stand and be there for you when you need them, it is very scary for both of you but try and get them to keep carm and they should be ok, if they are at all scared at what to do then play safe and call for help, after a bit of time your close friends will start to get more use to them and not so scared tell a new thing comes to light, i have had NEAD for 4yrs and my partern still finds some time they are scary, if you need to talk you can call me any time and i will reply as soon as i can, there is a young peoples area you can join as well and you will find how other youngsters cope,
Garry

Garry,
Thank you! I have been working on just getting through one day at a time. I guess I kind of have to anyway because my memory is so bad I have to write down everything in my journal or I would have forgotten it the next morning. My family is not always aware of what it's like to have NEAD. I have only had one convulsive seizure so far. When the school nurse told my parents, they didn't really believe her. They've seen hundreds of the smaller ones and they still seem surprised by them. I am trying to make them understand that it is highly unlikely that the big seizure was a one time deal. I think the biggest thing is that they don't understand that my next seizure could be tomorrow. I could have a big one two days in a row. I had to chase after my mom for two weeks after my first convulsion before she even thought about a seizure action plan or telling my teachers. I really didn't want them to call an ambulance because I have already been labeled as "seizure girl" by almost everyone outside my friend group who knows. I was very very sick over the summer after developing heat stroke on a school trip to the point where I stopped sweating. After months of tests, hospital visits, and being sick all the time I am so tired of being another test subject, another number on a doctor's sheet. Developing NEAD has literally been just another thing on my list.

hi findmagic,
it is very hard for the people who care and love us, to come to terms with as they dont want us to be in pain, on this site we all know how each of us are tring to handle this condition, and what we are tring to say, if you can get your mum or dad to read some of the questions and reply that others have sent out, mite help them, and if you want you and your family can privet message me and if they have any questions get them to ask no matter how silly it may seem, if they are concered its the only way we can find out the answers to the questions, taking each day at a time is the best thing you can do,
i have made a grab bag up with stuff i need when i have a seizuer and it goes with my all the time,
this may be hard for you as your at school and carring books and things, but you muy be able to keep some thing in the school nurses room, as for calling the ambulance it may be the school rules and out of there hands, please try and not worry about being labeled seizuer girl as you will be putting presser and stress on yourself, all you have to remember is now you have found this site you and your family are never alone and someone will always be here to help, if you are on FaceBook their is a pervet group you can join and make more friends with NEAD,
Garry

Garry,
Thank you! I'll see if my mom or dad want to come on here. I'm not sure they will. The grab bag sounds like a really good idea. I was wondering if you had any suggestions as to what I might put in it? I guess I never really thought about it before. I think I could put it in my book bag or in my locker.

I don't think school has to call an ambulance anymore because my mom finally got a seizure action plan started. I also have a few teachers who are very aware of the situation. My friends have all been super understanding. I have one teacher in particular who is going out of his way to help me and help my peers so they're not as scared when I have a small or a large attack. Getting school involved has been one of the hardest parts and now I'm finally getting somewhere. I don't have a Facebook, but this website is definitely helping.

hi findmagic,
that sounds like you have most of the bases covered now and with school and teachers helping, i think you can do almost any think you like, and all the best to you, i wil send you a PM as to the grab bag and a list of whats in mine, just remember now you are just 1 click away for help and surpport at any time, and that goes for your family and any friends that need help to understand,
Garry,