Hi everyone,
I'd like to thank you all for answering my questions in my previous blog regarding my wife's Shivering symptoms and burning sensations.
She gets headaches with FND, but this time, she's had one since Sunday, which tends to come and go during the day.
She's being referred to Rheumatology due to muscle aches, to rule out Fibro myalgia.
Does anyone get long lasting headaches with their FND and what's your advice?
Thank you so much.
Best Wishes!
Tony and Kim Xx 👍
My son has fnd ,now for3 years , he suffers from terrible headaches, it can last a few days , and go away again for a few weeks,he gets strong painkillers from his doctor ,hope this helps you a little
dear tony and kim
its so nice to hear from you guys.
I'm sorry Kim is having headaches i do get headaches all the time and some make me collapse or even be sick i have been know to have little fits with them.
im having another mri next couple weeks.
i now wear glasses this helps a little but i find stress really affects me and my headaches so i try and stay stress free
when im bad my wife puts me to bed and i tend to sleep for hours this helps a little but sadly the headache is always there but at different levels .
i wish this was a more positive reply for you both but your not alone
we can fight this Kim
hugs to you both
tabey
Hi yes the headaches could be associated to FND , As long as all other causes ruled out. I to suffer from horrendous headaches that can take days to clear and only get better if I have total bed rest, I listen to my body and when I have a relapse the best medicine for myself is rest. Always remember it’s what works for your body ,
Hey LEE - I have headaches that are ongoing and get worse with physical and/or mental activity. My MRI’s are clean as well as other tests. The doctor tried a few things which didn’t work. He then tried me on Gabapentin which I understand is for seizures but has an “off label” use for headaches. I’m on a low dose which works to lessen my headaches. I tried higher dosage but it made things worse which didn’t come as a total surprise to my doc. So if all else is ruled out it might be worth a try to at least take the edge off and make the day a little better. Best of luck.
Yes l do have headaches l have mine every day , l also get a terrible pain at the back of my eye l only take paracetamol as I'm on to many tabs already
I hope has helped you xx
Hi Tony & Kim I started with really bad headaches/migraines now 4 years ago and was diagnosed with FND 12months ago been migraine free now nearly 12 months since they finally trailed me on topiramate when I was diagnosed. I also have MS so was already under a neurologist treatment for headaches and neurological problems but nothing seemed to fit but finally my backpain and headaches are getting under control. I was also suffering from severe chestpain before diagnosed, struggle to breath
It’s important that Ehlers Danlos Syndrome (EDS) and related cerebral spinal fluid leaks (CSF leaks)are excluded properly - which can be hard. The defining trait with these headaches is that they alleviate lying down and are bad again when sitting or standing or with any strenuous activity.
Also headaches can commonly be caused by spasms or degeneration in cervical spine and are called cervicogenic headaches. I’ve suddenly developed orthostatic headaches age 56 with photophobia and nausea. I failed to mention these to my doctors because I assumed they would be thought functional - so delayed reporting. They are now being taken very seriously by my neurologist - who knows that I hated her FND diagnoses and is trying to win back my trust!
Have a look at cluster headaches - they are not migraines and don't really respond to pain killers - I had one GP who gave me steroids for them, I don't think I ever needed to take a third dose to stop them.
My cluster headaches feel as though someone dumped a ton of bricks on my head, the pain is the whole head and feels as though it extends beyond my skull - beyond my nose even! I don't get them even more as I am on melatonin for insomnia - it inhibits cluster migraines as a very useful side effect.
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