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Why a sleeping EEG?

13 Feb 2016 08:14

My daughter is under a neurologist following a series of fainting fits (usually 3-5 years apart) although the last one was classed as a seizure (March 2015).  She has had various scans including MRI and EEG and when she had her follow up appointment in December 2015 she was told there was no sign of epilepsy but the MRI showed a tiny cyst 'outside her brain' which they would keep an eye on. Naturally she had her driving licence revoked until investigations are complete.  Her neurologist said he would send appropriate paperwork off.

Now, out of the blue she has received a letter saying her EEG was negative (no other information) and they have recalled her for a 'sleeping EEG' plus another MRI to check on the cyst. It's her birthday tomorrow and this was not the way we had  expected to celebrate it. I am so concerned that the stress of this letter and now the inevitable wait for new appointments to come through could cause more problems and wonder if there is anything practical I can say or do.  Thank you. Jules

Re: Why a sleeping EEG?

13 Feb 2016 10:30 in response to jules54

Oh sorry to hear that jules. It's weird she gets all these scans they say no sign of epilepsy and then out of the blew she gets this letter. Like you said the stress could cause more problems. I wonder what's taking them so long to figure out what this cyst is IR what they should do about it. I feel sorry for your daughter that this is happening and she's got her birthday round the corner not good isn't it. The practical thing you could do is its always said but be there for her and tell her everything will be just fine I know from experience that's a lot coming from there mother hugs -Diane x

Re: Why a sleeping EEG?

13 Feb 2016 13:16 in response to Diane1946

Thanks Diane; gave her all the re-assurance chit chat yesterday when we spoke and there will be plenty of hugging going on tomorrow when we gather for her birthday.  It's just a little hard to switch the inner thoughts off but, of course, we all know about the waiting and wondering!

Just got in from my morning out and about and not amused to find a letter addressed to hubby asking if he still required the 'bed' on loan - speechless does not cover it!!  Jules x 

Re: Why a sleeping EEG?

13 Feb 2016 13:30 in response to jules54

Well at least you had a little chat. That's shocking they sent that letter surely they would of been notified oh his death. I would give them a ring and tell them what happened and why they sent he letter a year later -Diane x

Re: Why a sleeping EEG?

13 Feb 2016 14:37 in response to Diane1946

Yes, Diane, notified by me so that could come and collect the bed! Would have phoned but they do not work Saturdays so have returned their form duly filled in on his behalf!!  Jules

Re: Why a sleeping EEG?

13 Feb 2016 16:46 in response to jules54

Oh Jules,

Have just found this post of yours and wanted to reply to you. I am so sorry to read about your daughters latest news. It must be very worrying for all of you. In one sense its good that they are keeping a close eye on her condition But can also understand your concerns they are not giving out any information as to why the extra tests are needed.

I was also disgusted to read about the letter concerning the hospital bed. That must have been very upseting for you. I know mistakes happen but you seem to have suffered so many. I hope your reply to them makes them feel ashamed.

Take care of your self and I hope the rest of the weekend passes by without any further problems, Take care; sending hugs, best wishes and kind thoughts, Brian

Re: Why a sleeping EEG?

13 Feb 2016 17:22 in response to woodworm

Thanks for your kind words and hugs Brian. Life seems to throw us all curve balls and challenges from time to time. Whilst I feel a little  drained just now I have popped the letter back in the post with suitable but polite comments.

Just hoping that when my daughter has this 'sleeping EEG' is can answer all our queries and in the meantime will do all I can to support her and give her a good birthday tomorrow. Her boys will lift the mood and the eldest will no doubt tell his Mum there is nothing to be scared of (he had the same procedure last year). Can only hope that she is blessed with a good outcome in the longer term.  Hugs returned. Jules  

Re: Why a sleeping EEG?

13 Feb 2016 18:58 in response to jules54

 

Hi Jules  -  so sorry to hear of the rotten time you and your family are having at the moment.  I hope tomorrow goes well and am thinking about you all x

Re: Why a sleeping EEG?

13 Feb 2016 19:03 in response to max56

Thank you Max, your kind words are so appreciated.  You and your own family have my best wishes and sending hugs. Jules xx

Re: Why a sleeping EEG?

13 Feb 2016 19:28 in response to jules54

Hi, Jules, this in some ways mirrors my son's problems.  Since he was about 16 he has had times when he has been found unconscious and he has had all scans and tests over 30 years and they have never found anything.  On Monday night my 45 year old neighbour was found unconcious on the floor.  She was taken to hospital where they thought she had had a seizure.  She had a brain scan and nothing showed.  They are doing a few more tests but don't believe they will find anything.

My daughter, who is a paramedic, said that it is believed that everyone will have at least one seizure in their life but probably wont even realise itI do hope that your daughter's tests will prove negative and that life looks up for her.  With best wishes.

Re: Why a sleeping EEG?

13 Feb 2016 21:07 in response to Pauline4

Thank you so much for your response Pauline. It is somehow comforting to know that others have been or are going through similar situations.  Fear of the unknown is somewhat disconcertin g and it is at times like this that my missing 'rock' is felt greatly. My thoughts are with you and your kindness  in helping others is so very supportive and we all hope for a good outcome at the end of the 'testing' road. hugs. Jules x