Chronic fatigue

Hi everyone. I am diagnosed with non epileptic seizures and wasn’t aware this was a sign of FND, my neurologist discharged me as soon as he found out it wasn’t epilepsy so I’ve just been left to get on with it since 2017. I have seizures at least twice a month and occasionally clusters where I will have multiple a day for a few days in a row. My other main symptom is chronic fatigue. That’s what affects me most really. I am absolutely physically and mentally drained everyday. I’m waiting for a referral from my GP to a FND specialist to get an official diagnosis and hopefully some kind of treatment. I was wondering if anyone’s ever been given any medication to help with chronic fatigue. It’s got to the point where I cannot function anymore. All my uni is online with the Open uni and I lost my part time job just before lockdown because of the amount of time off I was having to have. I’ve even found myself looking at how to buy adderall online (I’ve never actually done it and won’t) but I’m just so desperate to have the energy to live a normal life. I’m 25 and I feel like if something doesn’t change soon Im going to spend my life like this. I’m glad to have found this support group. Thanks, Cat.

[Keeponfighting]

Hi Cat I am sorry for your struggles with FND. I never had an epileptic NON seizures and I guess. But I had struggled with pains, weakness to my limbs especially both arms, tremors and fatigue. These is it self can be disabling. I did my social work degree being ill and at time I hadn’t yet received a diagnose of FND. When I finished the the degree in 2014 I couldn’t work until 2 weeks ago when I started my job. The Dr prescrbed to me pregabalim for pain and fatigue but all it does is makes you sleep and eat more. I’ve gained 20kg being on these medications since 2014. I stop taking them in January and I lost the weight, Please don’t be so hard on your self and watch the stress you are taking on cause it can have major impact on your symptoms. I am coping with work but I had to buy loads of vitamins and vitamin B12 is a God’s send for fatigue. It reduces your fatigue drastically. It is available on Amazon for £12 I think. I also take multi vitamins , CoQ10, and vitamin B comlex. These are helping me managed my symptoms while I do my busy social work. I advise you to try vitamin B12 to try to beat fatigue. Let us know how it goes. All the best.

[fredsmummy]

Hi cat,

I have non epileptic seizures too. I was diagnosed last year with FND and a couple weeks ago I was diagnosed with fibromyalgia which sometimes goes hand in hand. This is also associated with fatigue.

With my FND they prescribed sertraline which is actually for depression and anxiety but it also helps with pain and seems to help people with FND. I too take pregabalin but for my fibromyalgia but that does make you more sleepy

I would speak to Gp about chronic fatigue as they should be able to help you with this. There are certain antidepressants (used in our case for FND) which have more of a stimulant effect rather than sleepy effect and can perhaps help with your symptoms at the same time. I have hardly any seizures now since getting used to my medication

Sending you lots of luck

[Dugstar in reply to fredsmummy]

Hi I was just wondering what dose sertraline you take ? I'm taking 50mg but only been on it for 3 weeks still having seizures so do I need higher dose ? Also does sertraline help with the sensitivity to lights &noise which are some of my triggers xx

[fredsmummy in reply to Dugstar]

Hi dugstar,

I’m on 100mg but started on 50 too. I do think sertraline has helped with my FND symptoms but neurologist did tell me it doesn’t help everyone. I know that it Particularly helps those who previously suffered with anxiety .

I’m still sensitive to light and noise but I do have less migraines.

I also take magnesium and b12 which I definitely think helps. Some also have tried cbd oil

Good luck x

[Dugstar in reply to fredsmummy]

Thankyou I will start taking those as well xx

[Van604]

The B12 connection is interesting. I was having total collapses and the hospital found I was very deficient in B12. So I now take a supplement and have upped my intake of animal products. I'm now very careful to manage my fatigue - I'm a total Type A so it's hard, but I force myself to relax and just let things go as much as possible. I can't get on with traditional meditation, but reading a good novel or watching the birds and squirrels in the garden works for me. I wish you all the very best. I wasn't diagnosed until my 50s so I feel for you getting this so young. My best advice would be to try lots of things and then do what feels best for you. This isn't a one-size-fits-all kind of thing.

[DNE92 Moderator FND Hope UK]

Hi. Seizures are a nightmare - I take several per day. I was first diagnosed in 2013 and the seizures were not as frequent. They just escalated over time and then last year I got hit with dreadful fatigue. I haven't found any medical professional to prescribe anything for the fatigue - I just get told to "pace myself" which isn't very helpful when you can barely make it out of bed some mornings. Nor has there been anything offered to tackle the deteriorating seizures. Sorry I can't be helpful. As for antidepressants I would say that some can cause significant weight gain. I hope you get answers and help.

Cheers

Lou

[cocoferraro]

Hi cat,

I have had FND for 6 yrs and have had the best treatment, if you have got a good doc then they should refer you to rehabilitation classes, which helps a great deal, look at it as a brain injury ,and that the brain needs to be trained so that it works like it did before. take all the medication that is offered to you and also ask for PREGABALIN-A NON EPELEPTIC MED which helps a great deal with our symptons. Take it from someone who knows and has been to hell and back- SOMETIMES IT GOES AWAY AND NEVER COMES BACK, SOMETIMES YOU HAVE IT, IT GOES AWAY AND THEN YOU CAN RELAPSE AT A LATER DATE, AND LASTLEY, IT NEVER GOES AWAYAND YOU HAVE TO LEARN TO LIVE WITH IT.

IF YOU GET IT, AND UNDERSTAND WHY YOU HAVE IT, THEN YOU HAVE A MUCH BETTER CHANCE OF GETTING BETTER,

I am so sorry for all the misery and pain etc that this Disease has caused you, and send the biggest hug to you.xx