I need some help and advice, I'm so w... - Fibromyalgia Acti...

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I need some help and advice, I'm so worried that something is seriously wrong

nikki56
nikki56

I am a avid reader of this site, but have only posted on it a few times, but i am so worried at they moment that I feel I need to seek as much help from many people at the same time.

10 Replies
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Do ask us and we will try to help is there something specifically you are worried about?x

YASMINTINA
YASMINTINAFMA UK Volunteer

Please do ask we wil try and help and listening too don't suffer in silence it helps to talk xxxxx

I have a number of medical problems, so for a long time (15plus), some more recently, such as the fibromyalgia, which took a long time to reach the final diagnosis.

Just over 2 years ago, completely out of the blue I suffered 3 seizures in the same night, which eventually ended up in ICU. I was extremely lucky that my husbands was home that night, when he should have normally been at work. I was feeling well that day, and had been doing something as simple as loading the washing machine, and my husband thought I was hysterically laughing. After calling my name a few times, he came through to check and found me fitting on the floor, and then going completely ridged. By the time my husband had phoned the ambulance I had started to come round a but, but not making any sense ( and I had no recognition of this), and then as I was just about to leave the home, they ad offered my parents a chance to say hello. It was then that I had my third seizure, to which I was blue lighted to hospital, and the next recollections I have was 3 days later wakening up in ICU, not knowing what the hell was going on or where I was. Once discharged from the hospital, I was seen by the neurologist and they said that there should be no further issues. I was told not to drive for 12 months but as long as i had no further episodes I could carry on my life as usual.

literally 3 week before the end of my year long wait, I ended up being rushed into hospital again, in the middle of the night. From what I have been told from my husband and also by what the paramedics had passed on to the doctors, it seemed liked that I had had another type of seizure. This was different to the others as this was more a very vacant stare, unable to interact with anyone else, so again I was taken to a&e and given a battery of tests and scans, again most of which I cant remember. They kept answering me the same questions, and the worst of it was I couldn't even remember the names and ages of my own kids, which broke my heart. Slowly over a number of hours things started to come back and I believed that I had only been there for an hour or so. It wasn't until I was taken to an observational ward that I realised that it was daylight outside and it had been over 12hrs since the last thing I could remember.

as you can imagine I was completely freeked out on why it would have happened, especially after such a long time since the last episode, and also because it was so different from the previous seizures I had.

YASMINTINA
YASMINTINAFMA UK Volunteer

Hi again must have been very frightening I am hoping you have ongoing medical support and check ups ? Think that's very important don't every think I won't bother my surgery for the doctor keep them on their toes what I do now is when I see my doctor he pre books my appointment so im on his patient list they get to know you better that way,have you a good doctor you feel comfortable with ? You have 15 things? One of which is fibro xxxx

thank you for your kind reply, I may see if this might be possible to do this with my GP, that way if I cant speak to my usual gp, we don't spend half the consultation time just going over the history of my problems and actually deal with the matter I've called about in the first place. As you can imagine different doctors have personal preferences in their beliefs in fibromyalgia/chronic pain issues so can be quite difficult to get somewhere with these medical professionals. It may help if i could get a recommendation from my GP of another doctor in the practise that trusts will be fair to if I had to speak to them if my usual was unavailable that day.

Oh my goodness, that sounds very scary. I can't offer any advice I'm afraid as I've had nothing like it ... other than to say it does sound neurological. Are you being seen by any one at the hospital? Having tests? Or have you been left under your GPs care? I would be demanding every test in the book to find out what is happening. MRI scan I would've thought at the least!

Hope you find out the cause and it can be sorted. :)

Have you had blood tests for thyroid function and for levels of B12, ferritin and folate? Can you post copies of these test results with ranges? If they haven't been checked please ask for them to be done, if only to rule these out as possible causes. Low B12 is very significant in neurological symptoms.

Very best wishes

MariLiz

Hi nikki56

Seizures are not something I know much about so I can't give you any specific advice.

I'm not surprised you're worried though, that sort of thing must be very scary if you don't know what's going on. Sounds to me like no-one has properly explained to you what is going on or tried to put your mind at rest over things. You have every right to ask your GP to either help you put your mind at rest about whether or not you could have further seizures and what to do about them etc. And if your GP doesn't know then I would suggest you get them to refer you to someone who does know more about it.

Like a say I don't know about seizures but from what you describe that second episode sounds to me like an absence seizure. Don't take my word for it though, that's what a doctor should be explaining to you.

Good luck honey, hope you can get some proper support and advice soon.

Gentle hugs, Margaret. xxx

Hidden
Hidden

Hi Nikki.

I am so sorry for what you have been going through the last couple of years. Have you spoken to the doc about epilepsy?

The fitting you had initially sounds like grand mal seizures and the latest one a petit mal seizure.

Your neurologist would be the best person to talk to about it and at least to rule out epilepsy.

Take care of yourself and i hope you get answers very soon.

Victoria xxx

Thanks for all your messages, it’s so kind off you all,

I wish my family were as supportive as you all, my mother is blaming me, she thinks I purposely took an overdose, even though the hospital doctors have told us that it happened because I wasn’t passing urine for 2 days, which led me to have a build up of medication in my kidneys and they believe that caused it,

I now have to self catherise myself to.stop this happening again.

The second one was I took a reaction to new medication and that basically turned me into a zombie, when my husband could communicate with me and had to call an ambulance. It took 13 hours for me to be able to have a proper conversation with the hospital doctor.

Again my mother was not supportive and actually had a argument with me on the ward,to the point she was asked to leave the ward as I was getting so upset. I didn’t hear from her for over a week and even then she was being nasty. My husband actually took the phone of me and hung up on her after telling her what she thought of her, and that f she couldn’t be helpful or supportive.

My siblings had did what my mother did, luckily my husbands parents are so supportive and I feel much closer to them than mine.

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