Have DID and recently diagnosed with FND

[Krystal_System]

So, we have been diagnosed with DID since 2007. Our body is 37. There are at least 11+ of us in our system. Its complicated to explain unless you are familiar and we are mostly educating our treatment team as no one in our area specializes in dissociative disorders, just Trauma/EMDR (which doesn't tend to help DID)...so now we are diagnosed with FND which no one in our treatment team knows how to treat that either. We are all learning together. At least they are willing to learn and not one of those "I know everything about DID/FND..."

Is anyone here diagnosed with both DID/FND? We are looking to find/give support to those who understand this complicated dual diagnosis. Also, we are looking for any informational sites on FND that we can read and share with the treatment team as we need to research FND and its relation to DID...if anyone has articles, or websites that'd be great! ty!

[Shimmyaway]

The most informative site , headed by the chief guru of FND, Jon Stone, is neuro symptoms.org.uk. Also try St Georges Hosp in London ..you will find videos there. The book Reset and Rewire, (USA) gives practical self help strategies.. better than any live advice received from medics in most cases. FND is a slippery beast, which few medics can pin down, and as patients we can't pin down those few medics who are familiar with it. Happy learning journey...it is a bumpy ride.

[Krystal_System in reply to Shimmyaway]

Thank you for the information! We'll look it up!

[AlteredWorld]

I don't have DID but in my experience the best way to mitigate FND symptoms is rest - yeah, I know, impossible when coupled with certain conditions, I'm in an online peer-support group and the general consensus is use spoon theory to best effect so you can have some form of a life rather than constantly battling against symptoms. FND being such a weird one, I need to clarify that the main symptoms two of us are up against was the total body paralysis aspect - and ironically rest was required because we were collapsing from brain overload and or stress.

Guessing DID would be tiring on the system could be why FND has become part of the mix. There's nothing I can take for my symptoms but rest and staying hydrated helps as well as support from friends and family, including physical support as well as keeping an eye out for debilitating signs, to get me somewhere fast to support my body e.g sit in a car

I have many other symptoms, but this one is my main concern.

[Shimmyaway in reply to AlteredWorld]

I'd be interested to know how you found the EMDR, if you wouldn't mind. I don't have symptoms as severe as you, mainly shaking and hypersensitivity to some sounds and touch... barriers enough to a normal life though.

[Krystal_System in reply to Shimmyaway]

The EMDR wasn't conducive for those with DID. If we weren't plural, it's supposed to work well for trauma, but since DID is a dissociative disorder as is, you just dissociate during the EMDR which prevents it from doing any good.

[AlteredWorld in reply to Krystal_System]

And you may end up with a +1 to cope with the treatment. When EMDR isn't the solution, avoid it.

[Krystal_System in reply to AlteredWorld]

yes, tried it once and it was a disaster! Wasn't about to play with fire!

[AlteredWorld in reply to Shimmyaway]

Unless EMDR treatment is conducted by someone with a great understanding and a lot of years practice - don't go near them. It needs an expert if you have multiple traumas.

[Shimmyaway in reply to AlteredWorld]

Thanks for the advice .. am still deliberating.

[Krystal_System in reply to AlteredWorld]

yes, EMDR doesn't help usually for CPTSD either (could be wrong), but hear its great for single-event traumas.

[Krystal_System in reply to AlteredWorld]

100%

[Shimmyaway]

Training course in FND available at futurelearn.com/courses/fun...

Also suggest online training at REACT ..clinic in LA. Google Dr Julie Herschberg

Dr. Julie Hershberg PT, DPT, NCS (she/her)

Board Certified Neurologic Clinical Specialist

Founder + CEO [e-mail]

I am unclear what' We are 37, plus 11' means. Are you in the US?

[Krystal_System in reply to Shimmyaway]

Yes, in USA. We appreciate all this info! It deff gives us a place to start!

[Lady4]

Hi, I noticed Shimmyaway has given you lots of resources already. I noticed your diagnosis was recently, can I ask what FND symptom you are experiencing. I know there is one types of dissociative seizures and looking back in history there was thought to be some connection.

[Krystal_System in reply to Lady4]

Hi. Have gone to DR and cleared all medical reasons for the symptoms: strokes and seizures (apparently called functional dystonia). Also having severe vision problems where it gets tunneled and some object is close and everything around and behind it is blurry and distant. Those are the bigger ones, then there are some smaller indications that its FND. EEG came back normal, and the MRI's normal. We did a neuropsych evaluation and they said its FND.

[Shimmyaway]

There was a recent post on here saying that cutting out sugar can reduce the seizures. Another contributor tried it ..and reported it worked, reducing seizures to zero. Bingo!

Before modern drugs epileptic seizures were controlled via a ketogenic diet (no carbs) ..although I know FND seizures are not the same and do not involve extra electrical activity.

[Krystal_System in reply to Shimmyaway]

They ruled out epileptic and decided the are NES's. Then eventually came to the FND diagnosis. Cutting out sugar though couldn't hurt. Maybe our body will lose some weight....

[AlteredWorld]

It might just help, I was diagnosed with NES's... Non-epileptic epilepsy also non-diabetic diabetes, there were other 'non's too but tbh I gave up trying to remember them all - instead I just think of it as a condition that mimics everything else! It's difficult to treat "nons" and difficult to know when I'm 'genuinely' experiencing really damaging conditions... I did eventually become type 2 diabetic, but it's in my family and turned up 9 years after being in the 'non' group and it took me months to decide it was real and get checked out for it.

so, yeah with the body being 11+ it's going to be more challenging to work out what's happening and being able to monitor the weirdnesses of FND in conjunction with DID... I'm only 1, and it keeps me busy every day!

I wish you all the best, you could be the test case for DID's and help others around the world with the support behind you all xxxxx

[Krystal_System in reply to AlteredWorld]

we would love to help other somehow, esp with DID research. Not sure where to go to hook up with something like that! We would deff keep them occupied (joke, kinda). Thanks for your kind message!

[Shimmyaway in reply to Krystal_System]

You could keep an eye out for clinical trials .. some for FND are put on FNDHope ..not sure who your medical 'warriors' are for DID... but as you will know much funding for medical research is being withdrawn in the USA. The authors of 'Reset and Rewire' are FND researchers at the children's hospital in Texas and university of Colorado.