FND and cortisol

[AjaStar]

I was curious if anyone has checked their cortisol levels since they have been diagnosed with FND. They say FND is stress related and since cortisol is the stress hormone I wanted you guys to post your levels and see if there are similarities.

[CharlieG87]

Yes they initially thought I had Addison’s disease which is related to low cortisol levels.I had a synathagen test to rule out Addison’s disease.I had low cortisol result from my blood tests.I hope this helps

[AjaStar in reply to CharlieG87]

So how do the doctors treat you for your low cortisol and did they say that contributed to your FND

[tabey]

hi nice to meet you i hope your having a nice weekend.

I've had mine done about two weeks ago and it came back as 5.4 which i believe is pretty ok hope this helps and trust me my stress levels are mega at the moment

best wishes

tabe

[AjaStar in reply to tabey]

Thanks for your response, I’m planning to ask my doctor for a test, which they should have already ordered if they thought I was stressed out lol

[sykgirl]

Hi,

Interesting that you should ask this because I'm currently having various hormone levels tested. The general blood test that the GP will give you for cortisol levels is apparently not very revealing or reliable, so you need to request a Synacthen test and a Glucagon Stimulation test, which are apparently preferable. You may need an endocrinology referral to get some tests. That's the waiting game I'm currently playing! However, my FND was caused by my body malfunctioning due to a virus, not stress, so not sure if that makes a difference.

Hope this helps. Good luck!

[AjaStar in reply to sykgirl]

Thanks for the great info! These doctors still don’t know what truly causes this and what the heck is actually happening. They say software problem but we need to know specifically what part of the software Is bad, is it the hormones, neurotransmitters, a tiny tumor that the MRI can’t pick up, adrenal fatigue, autoimmune, negative thoughts, overthinking, our genetic DNA? They still needs lots of research.

[thinkin]

Hi,

FND is not stress related. It is not "all in your head". It is biological not psychological. People with FND have changes to the size of parts of the brain. There is no overlap with people without FND. The amount of this damage can predict who recovers and who doesn't. But saying that, it is recoverable, even after years.

Stress can exacerbate FND and underlying biological properties can make you more prone to feeling more stress which can make you prone to FND too. Many of us have vitamin deficiencies and insufficiency. Not enough of the right type of B6 can leave you with a low mood - just one example.

Things like infection can affect mood and FND. Probably because they reduce the resources available to your brain. Some areas of your brain can be more susceptible to lower levels of vitamins, whilst the rest of you is ok. Your brain is 2% of your body mass and yet consumes 20% of your energy. Levels of vitamins around your brain can be up to 50 times higher than your blood. Your brain is greedy. Stress will also use up these resources, both within the brain and in your body as a whole. So will pushing yourself too much.

The enhanced stress response (or emotional liability) comes from the FND and what ever is driving FND remains often hidden. Stress is a symptom of your FND. It was found that although a stressful event may have been the straw that broke the camels back - so to speak - making it appear the cause, looking back in the year or even years before FND onset there were also biological stresses on the lead up to onset.

If you follow FND Hope and others on Twitter some of the researchers post their findings. There's interesting stuff out there. If your doctors are telling you FND is stress related then you need to educate them. Prof Mark Edwards give a good explanation in his last webinar of the core of FND - it's available on Youtube along with others. The term "psychogenic" is often misinterpreted (even by medical staff), it's why they need to use the term functional neurological disorder instead. He explains it well.

There is no panacea. Even with a main driver identified I still need to follow the advice on the FND Hope website. It's a whole life change. Pacing, sleep, diet and nutrition, the dreaded hormones, optimising all health conditions, taking supplements in the most biological available type, distraction techniques, and yes handling stress - which thanks to the right type of diet and supplements is now back in proportion. I know for sure how much of a symptom it is rather than anything causative.

Prof Edwards told me that I needed to optimise my other conditions in order to relieve my FND - he was right. Start with what you know. Make sure you get the actual levels of your vitamins. The "normal" level for B12 is too low for what we need - there is some advice on the FND Hope website, but you'll have to do some research. If you keep focusing on stress and psychological causes you could be in for a very long journey.

Sorry to prattle on so much. I've made a ton of mistakes over the years. If I can help someone to avoid common pitfalls then I've done my bit. I hope you find your answers. xx

[AjaStar in reply to thinkin]

Wow you have explain this much better than any of the specialists I have seen. I do try to research online, but it can be confusing. You hear that functional MRI findings show people with FND “The results of the study, which compared 30 patients with FND to 30 healthy controls, indicated increased connectivity between motor regions and several portions of the multimodal integration network among FND patients. Not only did symptom severity correlate with increased connectivity between specific network structures, but the study revealed - for the first time - that increased coupling between the insula and the amygdala, a structure key to emotional processing, correlated with improved response to treatment.” Okay so what the heck does that mean to us simple folk? Or should I go with the ancient Egyptians that say I might have a “wandering uterus”? Or with the docs in the 1800s that treated the women with vibrators to achieve orgasm, which does have some merit cause sometimes I have sex to help distract myself and when I orgasm my symptoms sometimes temporarily go away, and then that leads me to check online “okay so what happens in the brain when a woman orgasms” and it mentions many parts of the brain get activated and oxytocin and serotonin is released, so what medicine does that? Well antidepressants help with serotonin but if that is what FND needs then all the people on those meds would have been cured but no they still get symptoms, so no that’s not it, so back to the drawing board. If enough doctors get FND themselves maybe then they’ll be more motivated to do better research.

[Jazymay in reply to thinkin]

That was interesting. Thank you for your understanding of what you have read.

Research, research, research!

[Jazymay in reply to Jazymay]

(I mean we NEED more research, not that you both didn't do yours. Obviously you did. You have read similar articles and studies to me!)