FND related headaches

[Simona35]

Is anyone experiencing migraine like headaches with FND? I have some very bad days, brain MRI was normal

[Jofisher]

Yes they’re horrendous

[Simona35 in reply to Jofisher]

Thank you Jofisher

[Jofisher in reply to Simona35]

I’m under st Thomas’s in London I’ve tried all sorts of preventive medication the last thing I’ve tried was occipital injections but they made them worse so now I need to try Botox. At present I use sumatriptan injections for the bad ones in the night and then tablets in the day if I can catch them quick enough. Check out these podcasts bbc sounds Heads up they’re very good.

[Simona35 in reply to Jofisher]

I'll check them thank you very much. I'm taking tablets but they are little to no help, I've also LBP daily, nothing helps 😔

[Jofisher]

low blood pressure? Is it postural hypotension? Check out fibromyalgia as I have that as well

[Simona35 in reply to Jofisher]

Blood pressure ok, I was told LBP is FND symptom, spine MRI normal. Do you receive any treatment for FND? I was paralysed waist down, start having full body shakes when start walking again, physio helped me with mobility, but it seems this is all what can be done, I just have to live with the rest of the symptoms, do you feel the same way?

[Jofisher in reply to Simona35]

Not really had much help neuro physio had to give up as they just made me worse. Tablets turned me into a zombie so stopped them so it’s just migraine stuff and I just try and manage and do what I can. Pacing is really important good sleep hygiene reducing stress healthy diet and avoid adrenal drainers and learn the word NO your needs are just as important as others. Concentrate on what you can do and not what you can’t and build from there. These are the things that have helped me.

[Simona35 in reply to Jofisher]

I know we are all different and we all have good and bad days but at the end we're all in the same boat. I've found neurologist who specialise in FND will try to get an appointment and if anything good will come out of it I'll share with community. All we can is support and help each other

[Jofisher in reply to Simona35]

All the best and remember where you are now doesn’t mean it will always be that way. I was housebound but not anymore.

[Jellofabulous]

Yes, I have struggled with almost daily migraines, for years. They are a huge trigger for my fnd symptoms so it’s important for me to keep them at bay. I use a combination of meds, lifestyle/diet. Recently I’ve gone gluten free and that has cut them down by 90%! It’s been incredibly helpful. I also need to manage my stress and get plenty of rest.

[Simona35 in reply to Jellofabulous]

Hi Jellogabulous, thank you for sharing. Are you allergic for gluten, that's why decided go gluten free? I've always lived an active life and eat healthy, was doing pretty well since my first symptoms in September, obviously had bad days too, but just recently had a huge step back due to work related stress I think this could be my biggest trigger, I've developed new symptom, I can't eat, simply can't force myself to have a bite, thought of having food in my mouth makes me sick, sometimes with certain distractions I can have a little bit of food but moment comes when it feels that valve have closed and that's the end of eating.

[Jellofabulous in reply to Simona35]

I went gluten free after my doctor suggested I try it. I also had other fnd friends say that it helped their symptoms as gluten can cause brain fog and headaches for some people. And I’m sorry you’re struggling with eating. That’s been a big issue for me as well. Learning to manage my stress and protein drinks have been super helpful. I often don’t have an appetite or struggle to chew/swallow and being able to just drink my meals has been helpful.

[Simona35 in reply to Jellofabulous]

Thank you for advice, I'll definitely consider both, I loved coffee, could have one after another now even this is a struggle, I'm happy if I get half cup, but water is a different story I'm constantly thirsty so maybe could have protein shakes, no smoothie although I liked them too just a thought of it now makes me nauseous

[Van604]

I had a weird episode where it was like the left side of my vision shattered and I could see prisms. Opthalmologist said it wasn't my eyes - probably an aura. Neurologist didn't have a clue. Only happened once, but I have had a ton of other symptoms. Overloading my brain seems to be a factor - psychologist said I could be "a bit autistic". Don't disagree that I'm not neurotypical!

[Simona35 in reply to Van604]

Hi Van604, thank you for sharing. I know there are many cases when diagnosis taking years, and I feel so sorry for those people, they have to live with all the symptoms not knowing what's wrong with them, I was lucky in this case, was diagnosed in second hospital, although was send home from the first one in around 24h, was told there is nothing wrong with me, n9 diagnosis, but I was paralysed waist down!!! Left hospital in a wheelchair, dad had to carry me to the house, overall I was very active person running 5-10k and suddenly paralysed but told nothing wrong with me, so I know the frustration, but there is so difficult to find the specialist who knows about FND that's why hospitals are sending us home as they can't find anything physically wrong

[Sarsoura91]

Are you sure what you have is FND and not a type of migraine? I'm not sure what symptoms you have but have a look into it.

I was told by two neurologists when tests came back clear that my symptoms were FND. My uncle, who's an experienced GP, later listened to my symptoms and said they fit hemiplegic migraine (I don't always get head pain btw). And he was right- coffee helps my symptoms subside, as does high does 900mg aspirin. Magnesium helped my intense muscle aches from the involuntary spasms, and daily ginkgo (which functions in a similar way to aspirin in increasing oxygenation to the brain) has acted as a moderate preventative.

I mention this because when I was told I had FND, I thought nothing could help me, no less an over the counter medication. I was stunned when high dose aspirin, at the suggestion of my acupuncturist, helped me as an episode came on.

I have unilateral weakness and numbness as my primary symptom occurring with extreme sensory sensitivity by the way, but other autonomic symptoms as well.

As I said, I don't know what your symptoms are, but check to see whether migraine might be causing it, as there are many types.