Living with Functional Neurological Disorder.


August 2016

Never give up! 

I have been extremely lucky to have a really good rest over the summer holidays. I return to work on Thursday and I am taking on more responsibility and more whole class teaching. There is a mixture of feelings that I am experiencing. I am excited; I have so many new approaches that I can’t wait to try. I am hopeful; I am hoping that by pacing myself, I manage to work and to not fall into a pattern of suffering. On the down side, I am worried. Despite the great rest I have still been experiencing migraines and seizures. They have lessened but they are still quite regular. 

Living with FND has taught me a lot about patience. I am a hard worker, I used to be ‘on the go’ from morning to night. I loved it. I love nothing better than working to my full potential. Now I am learning to be the new me. Part of the old Charlotte is still here and always will be but I have had to learn to adapt myself around surviving FND. Part of this adaptation is learning to be patient. 

Having a chronic illness is certainly life changing but it’s important to not let it become life destroying. I am not willing to let it consume me. Yes, of course, I am worried about taking on more responsibility and the effect this might have on my health but that won’t and never will stop me from trying. The easy option would be to roll over and give in to the pain, the exhaustion but then I would be losing. I refuse to give up and I refuse to lose!

I know that I’m relatively lucky. The fact that I can still work means that I am one of the fortunate ones. If you or a close family member has been diagnosed with FND, please don’t ever give up. You can still be happy and live a good life. It might not be the life you had planned but it can still be great and if you try hard enough it could even be amazing.

Thank you for taking the time to read my story. 

Charlotte xxx


FND and migraines

One of the most debilitating symptoms of FND has to be the cluster migraines. I have been really suffering for nearly a week now with terrible head pain which unfortunately leads to more non epileptic seizures. 
Some of my medication aims to prevent migraines, such as, propranolol and amitriptyline. These have made a huge improvement and have allowed me to have breaks between the pain. However, I can still be affected by normal migraine triggers. I have found triggers can include extreme temperatures, stormy weather and even a full moon?!? (Just like the tides the liquid surrounding our brains can be disrupted by a full moon)

There are a few ways to try and reduce/prevent migraines. The following is a list I have compiled from various neurologists and cardiologists.

1) Stay hydrated – you should aim to drink at least 3 litres of water everyday. 

2) Reduce or stop your caffeine intake – caffeine is a known trigger for headache. 

3) Avoid over stimulating your brain with technology. 

I have tried all of the above and have found them to be quite useful. Unfortunately, sometimes nothing will work and I just have to ride it out. I am meant to avoid painkillers as apparently they stop my other meds working properly. If you haven’t been told this then I would also recommend taking paracetamol and ibuprofen together every 4 hours. Obviously, I am not a doctor of any sort and these are simply my ideas and opinions. I hope that this information helps.

Thank you for taking the time to read my story. Hopefully, my head will improve before I go back to work!!

Charlotte xxx

All for the greater good. 

Living with FND and managing the condition requires me to take lots of different medication. Unfortunately, taking a lot of different medicine has an adverse effect on your body. One of the most noticeable effects is weight gain.
I have just been given a new trial medication to control my fainting which seems to be having a very positive effect,  however, this means that I am having to take even more tablets each day and I’m concerned this we cause me to gain even more weight. I am currently taking 12 tablets a day (I rattle when I walk!)

I have gained nearly 3 stone which is just awful. It isn’t all because of the medication but I am not able to be as active as I was before. I have discussed this with both my neurologist and cardiologist. I explained my concerns but they have both said to concentrate on getting well first and then I can focus on weight loss. I am literally in a catch 22 situation. If I don’t take the meds I will be extremely ill but if I do, I will not lose weight. 

I am so lucky to have Mr Right, I know that my weight gain must be horrible for him but all he does is compliment me all the time. 

In the depths of it all I know that what’s important is me being well. I won’t have to be fat forever and I can start to work on it when my health hopefully stabilises. Just getting through each day and coping with the pain is enough for me to deal with right now. 

If you have a loved one who is suffering from a chronic illness, please try your best to support them. I know that some people gain weight even when going through chemotherapy. What they need to hear is how well they are doing and how much you love them.

Thank you for taking the time to read my story. 

Charlotte xxx

Don’t stop believing …

I have just returned from a week holiday in Scotland with my family. We had a wonderful time and were very spoilt. As a whole my health help up okay. I only had three fainting episodes and my seizures only occurred during the night when I was in bed.

I am meeting with my cardiologist tomorrow to review all my new results as I had several tests carried out during the first week of the holidays. Originally, I was meant to be having my operation tomorrow to be fitted with a pacemaker but just before I went to Scotland I received a letter to explain the change of plan. I was filled with mixed emotions. Obviously, I don’t want to be given a pacemaker at the age of 33 but to be honest, I just want the doctors to ‘fix’ me. 

Over the past three years, I have learnt to live with and understand my brain disorder. I can read my body and know when I’m over doing it. Of course, I would love to wake up one day and not be in pain but I have learnt to accept my limitations. I have forgotten what it is like to not have a migraine, to not have burning pain all over my body but I can accept it. The problem with this new condition is that I can’t just live with it and accept it. I have no idea when I will collapse and I feel frightened and out of control. So I guess what I am trying to say is I really don’t care what the doctors decide to do, I just want them to fix this so I can just get on with my life and dealing with Functional Neurological Disorder. FND alone, is more than enough to deal with! 

I am lucky enough to have been given the opportunity to return to more whole class teaching in September. I will be teaching 2 and a half days a week with rests in between.  I am really excited but understandably nervous. I want so badly to be a full time teacher again. It will help me both mentally and physically. I believe that I can achieve this even if I’m living with FND but my other condition could make it a lot more difficult! 

I am not a religious person, however, I have nothing against those who have faith. I would love to have the belief that there is a greater being. Someone looking out for me. I will always try my best at everything I do. I will never give in to this. I have been told by medical professionals to give up work but I really don’t think that is the answer. If I stay at home each and every day, this illness will consume me. I will continue to fight this and get back to work full time in the future. If  there is a God I hope that he/she would see my struggle and suffering and give me a helping hand. I don’t ask for much, just that my children are happy and healthy and that I can give them the life they deserve. I can only do this if I work and without my health that is impossible! 

If you know someone who is ill or has a chronic illness please always try your best to support them. You may disagree with some of the things that they do but as much as they will probably hate to admit it, they need you.

Thank you so much for taking the time to read my story. I am always happy to answer any questions about FND. 

Charlotte xxx

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