Another new symptom , Non epileptic seizures 😩😖😔

[Jayd100516]

After experiencing stroke like symptoms on and off I'm now experiencing seizures too and to top it I also have fibromyalgia so I'm absolutely exhausted and my poor partner is having to care for me 24/7 I'm really struggling with my self esteem cause I use to be a woman who'd love to look her best , be out going , independent ect and now I need to either use a wheelchair or walking cane and just brushing my hair exhausts me and then there's the side effects of the medication I honestly feel like a zombie now days and no matter what I take my pain is never under control! Sorry for the rant I'm just so fed up I'm a young mum who's 24 and I can't even hack sitting and reading with my daughters without either stuttering , slurring my speech or feeling so exhausted just reading a sentence it's just not fair

[JessicaIndo]

It just really sucks sometimes. I'm 34 years old.

I feel for you but try not to beat yourself up. Im very newly diagnosed but I am starting to think acceptance of this horrific disorder is a huge point. I don't want to accept it but recognise that stressing is only going to make it worse.

Yesterday I attempted to return to work only managing to make it to the car park then a colleague had to bring me home. My stomach and chest pain was incredible and brought me to tears. Then my face started tingling and I always know then it's downhill from there for other symptoms to come on. One of my main symptoms is loss of use of limbs, particularly arms and stuttered speech.

We have good days and bad days. I really appreciate this site for being able to rant in our lowest times. You can feel like no one knows what your going through. I can only imagine the distress it causes when caring for a young one but remember she loves you and is happy with you by her side whenever possible.

I'm determined not to let it ruin my life. My mantra today is a Japanese proverb:

'Fall seven times, stand up eight' .

Xx

[kjkla85 in reply to JessicaIndo]

JessicaIndo I like the mantra. And take getting to the car park as a success...next time you might make it inside. I hope your workplace are supportive and understanding x

Jayd100516 it's a really tough road to be on. Feel free to rant away! There's comfort in sharing with others who have similar experiences. I am 31 and have two young girls. They try to understand but I'm sure it's incredibly frustrating for them. I can't read/talk at times and my eldest tends to read the words for me bless her. It's hard not being at to do all the things you could before/want to. Give yourself time and be kind to yourself. I'm sure your daughters are happy just to see you and have a snuggle x

[DNE92 Moderator FND Hope UK]

I'm so sorry for all you are experiencing at such a young age. My symptoms started in my 20s (e,g. random drop attacks that were sore and came out of nowhere) but things only started getting really bad over the last few years but I'm in my 40s and have not had the experiences you are experiencing at such at young age. I too know the stress of not wanting to have to make my husband a carer - I'm mobile and we have just up business together, but know how you feel about always having been independent and when that starts to go your self-esteem plummets. I've a physiotherapist (which I pay for as the NHS can't supply it for me) and sometimes my therapist and I arrange for my husband to see her privately to explain how having this condition makes me feel and also I want him to get any carer fatigue out of his system. Do you have any chance of something like that? it's not a panacea but does help me to get across to him from a professional where my pain, fear and stubbornness comes from.

Sorry I can't say there is a magic silver bullet to this s*** disorder.

Cheers

Lou

[Jayd100516]

Thank you all so much for replying to my post I really appreciate it , I'm so sorry to hear about all your struggles it's just not fair and what angers me is professionals are so ignorant towards this disorder and luckily I myself do have a great neurologist who didn't even have to think twice about diagnosing me with fnd which after 2 years of tests , scans , questions I finally got my answer which at first I was relieved that I wasn't going crazy but he soon brought me down to reality and (lets say he deffinately didn't sugar coat the truth ) said I need to understand that this basically isn't going to go away and that I need to educate myself as much as possible on the disorder so on my next appointment I'm able to understand what's being said and how to understand what my outlook on life will consist of. It's still early days for me as I was only diagnosed in late July. But I wasn't too suprised that eventually I would basically crash as I was ( before massive episode of stroke like symptoms ) coping with all my pain and symptoms and having to care as a single mother for my two children one has severe learning difficulties and the other has a potentially life threatening metabolic disease and major behavioural issues. I would be caring for them taking them to school and nursery , looking after a three bedroomed house , going shopping , attending meetings (with no car so I was always traveling by bus aswell) going to hospital appointments as my youngest with the metabolic disease use to have a permanent nasal gastric feeding tube due to her being a poor eater which is critical that she eats as her condition has the potential to put her in comas or even kill her I'd also try do fun things with my girls and make healthy meals all the time and I hardly had any help so after doing all that for so long my body just said enough is enough. I think dealing with all that and also in the past going through domestic violence and abuse a from a ex partner and also going through it and watching my mum go through it with her ex and caring for her at 14 until i was 21 due to her having bipolar disorder & many more traumatic painful things my brain and body just couldn't cope anymore 😢 I'm not looking for sympathy but I've even had a woman's aid worker say that she was surprised I wasn't on hard drugs due to all I've endured since a little girl. I really think stress and exhaustion really play a big part in bringing the symptoms of this condition on and now I can't even talk to someone without being exhausted or feeling ill and dizzy. I have two daughters and one step daughter who I truly adore and I know this is hard for them to understand and especially my one with learning difficulties. In time I know this will become the norm but atm I'm still overcoming so many bad painful memories which have also left me with ptsd it's just so much to digest and as selfish as it sounds I really wouldn't have thought I could end up this ill at such a young age 😔 sorry for the massive essay I just hardly have anyone to really talk too.

[Hidden in reply to Jayd100516]

Such courage! xx

[AliRT]

I too have a great neurologist. I think we are both fortunate. I have seen of the people say it too but don't ever apologise for offloading on this site. It is what it is for. I had cancer a few years ago and through major surgery, it is now gone, touchwood but I can absolutely say that so frightening an experience had absolutely nothing on F N D and the way in which that has changed my life. I am single but without children so I only have me to cope with, albeit with support of friends and a lot of home help. It sounds from what you say like you do extremely well To cope as well as you do. I do hope you see that. I hope you see how incredibly well you do, rather than just seeing how hard it is and how awful the symptoms are. Have you had any psychological input? After looking into different options, I have been using a company called Insight healthcare which is free through the national health service. I struggle to get to appointments because I can no longer walk and I get so tired that they do offer phone appointments. They are about half an hour each but only every two or three weeks so even if you get very tired talking to people, you might somehow be able to manage this. Maybe it will be worth looking into whether they are available in your area? They are not miracle workers. The past couple of weeks I've had an exceptional flareup of my symptoms, worse than it has been for a long time, but although I know I am a long way off as good as I can get, whatever that is, I am finding the opportunity to talk to them very useful. I know that CBT for chronic fatigue And other neurological conditions often gets a bad press but personally, I would completely recommend it. They are not trying to look into the reasons why I got ill or in any way making me feel like any of it is in my head. They are simply working with me to find management techniques and help me process the experience and try to adapt my mind set so that it doesn't Impact so negatively on my life or make me feel that I have lost so much. I am a very positive person but there are elements of my life that I feel a huge sense of loss for. I have also now written an essay but I do hope the suggestions are of help to you. You will find a way to manage, even if it will take time and probably a lot of help. Take care

[Jayd100516 in reply to AliRT]

Thank you for replying , I definitely will be looking to get support as I have such a low self esteem and am so anxious about going out as I'm scared of being overwhelmed which sets off my seizures. I'm so glad to hear you survived cancer and I really hope it doesn't return. Sorry it's short and sweet I'm just upset atm. Take care x

[AliRT in reply to Jayd100516]

Thank you for your kind words. I am sorry you are struggling with it all so badly. For me, it has got much easier. I don't like it, it's horrid and frightening but am used to it I suppose. I'm quite sure you are right about stress and exhaustion and it sounds like you have so little support and have been through so much. Everyone is different of course. Noise sensitivity makes it harder for me to go out and exacerbates my spasms and so forth but once in awhile I do, just so that I am not isolating myself on top of everything. It is understandable that you are so upset. Seizures in particular can be very frightening. I am fortunate as I do not have them too often and I have learnt thatthey always end so they don't scare me as much like they used to. Hopefully, you will soon get the support you need and it will improve for you to. Lots of luck for the future X