Hi everyone.. Firstly I want to apologise for this long post.
I guess it all started roughly 16 years ago and to this day, for me 2009 only had 363 days I day as completely gone from existence. The symptoms I experienced then and still continue have are, severe headaches everyday which only increase, my controllable ones are tension and mild migraine. Shooting pain which start from between the shoulder blades shoot up the left side of back of neck then into the head feels like electric shock, sharp stabbing pain then across the back of head. Strange sensations from head to toe for example touching left side face, the sensation is on right side. I know I’m weird right.. lol! Anyway back to these symptoms vertigo and dizziness, nauseous, constant room spinning, blurred, double and triple vision. Tingling and pins and needles, severe tinnitus ( ringing, buzzing and clicking in the ears ) and balance problems walk as if I’m drunk. Weakness on the whole right side. And many other symptoms, everyone thought I had a stroke including the ambulance crews, I was admitted to hospital and all scans: CT, MRI, MRA came back clear, which is of course good news to hear that no stroke was there. I had lumber punch, EEG, again these were clear. Neurologists at that time told me that I have chronic migraines and prescribe me all types of antidepressants, amitripaline, nortripaline etc sumatriptan, etc nothing seemed to touch these headaches. So I stopped taking the meds. I’m also hard of hearing which I lost my hearing due to the attack back in 2009.
so for nearly 15 years I have managed and and tried to control them which is very difficult to say the least, I’ve tried various pain management, CBT therapy, emdr therapy these again have not helped me either. Then last July I was admitted again into hospital for suspected stroke again this time a whole lot worse compared to 2009, I could not communicate at all as my vision was completely blurry, my speach was slurred, weakness again on whole of right side, I couldn’t write, I couldn’t use British Sign Language either. Again ambulance crews and nurses including several neurologists strongly suspected a stroke but again all tests clear. I was in hospital for 2/3weeks, pain medication was morphine paracetamol, antidepressants. But nothing touched these headaches. The neurologist told me that I have FND, demyelination disease, chronic migraines, referred my to a different neurologist who recently diagnosed me with Hemiphlegic migraine, Vestibular migraine, Ocular migraine and silent migraine. He also said that demyelination disease is not present. And don’t know what the shooting pains are but I need more tests. I again am taking meds gabapentin, which I have been told to take maximum dosage 900mg, paracetamols,ibuprofen and aspirin on a bad day. But I have 4/5 bad days so I guess I’ll be walking round and looking like a zombie.
I am so sorry for this long post.
I wanted to ask and see if anyone here as had similar symptoms especially the shooting pains.
I have been doing some research and come across occipital neuralgia and also FND which has made come here.
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FreesignerRichie
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Exactly like my wife mate one night out the blue in January 2021 it was like she was having a stroke I was so scared rushed to hospital all test came back clear and she was good to go. She has numbness down her whole right side constantly her balance issues are awful. 2 years we waited to see a neurologist and he said it was down to migraines I was so angry the July 2023 I took a loan out and we went to a private neurologist he had her diagnosed with fnd within a few hours. Bloody scary but it kills me watching her everyday seeing her symptoms and no one helps it's awful. I've been really ill too In the same te so it's been even.more of a hell man I'm so sorry you are going through this
Hi Brian, I was wondering if a compression garment would help bit I found out it depends on whether additional proprioception is need or she has a gravity issue:
"According to some researchers, the skin stimuli caused by compression garments would benefit much more people who rely more on gravito-inertial information (dependent on gravity) than on proprioceptive information (dependent on support). Because people who use a gravity-dependent strategy adopt a more exploratory postural behavior by increasing the body's sway to obtain vestibular information (dependent on inertia and gravity)."
thank you Brian, sorry to hear this as well with your wife.
The thing that I’m finding with neurologist not one of them correspond with each other. For example neurologists who are so called specialise in headaches have diagnosed me with chronic migraines, I went to a top headache clinic a few months later to get the right treatment and management in place. They wrote a letter my neurologist stating that I don’t suffer with migraines at all and that they should look into doing tests on my CNS ( Central Nervous System. ) nothing as ever been on this. Which is quite bizarre to say the least.
Does your wife ever had or get the shooting pains into the her head? I’m struggling with these mainly and can’t not get on top of them.
I haven't had the shooting pains. I have had migraines. I noticed you tried sumatriptan did you combine it with Aleve? If you didn't take that cocktail you might want to try it again. Sumatriptan doesn't work on its own for me but combined with Aleve it is awesome.
Hi sorry to hear you are going through this, it’s a total nightmare, when I read your post I thought you were talking about me, I experienced all these symptoms, my headaches are always across my eyes and my head feels pressurised like it could explode the constant tinnitus and hearing loss I now have hearing aids, stroke like symptoms also temporarily lost my sight in left eye which they are treating as a tia and put me on clopidogrel
No support anywhere before I had my diagnosis my gp told me I was a mystery came out of there so deflated, neurologist saw me once arranged all tests 1st mri showed white matter on the brain he said it was down to old age 😡 im only 59 had other tests done he said were clear which confirmed his diagnosis
I find it helpful being on this site as we are not alone, because its so scary when all these things are happening and dont no if there life threatening or not
Sorry for long reply and really hope things do calm down for you.
Hi alwayspink60, firstly no apology needed for your long post. I found most intriguing to learn that someone else out there as the same symptoms as myself. Has I was and have been thinking to myself maybe the doctors are right, that it’s in my head. But right now that thought can take a runner..
I agree that it is scary, especially when we get told things like: oh there’s nothing wrong with you or, us doctors think it’s in your head or even, it’s what we call a medical mystery as we can not find anything. There’s many more that we have all heard at some point. I can honestly say this to one of their points and that is they are 100% right about it’s all in our head. Because we are the ones having to re change our life around because of these head pains and what we think or not normal symptoms and also what we or our family think are life threatening to us. we all know our bodies which is better then the texts book these doctors have learned and we’re relying on them to work with us.
I know now that since joining here that I’m in and also come to the right place. we’re all in this together.
Correction: most of the symptoms you seem to be experiencing are all in your head, FND isn't 😊, its real and diagnosed by "rule in" signs (not exclusion anymore).
Hi, my son has had various headaches over the years, some from falls, some tension headaches, currently having electrical shocks constantly.
Apart from medication have they referred to OT or PT. Compression can sometimes help for weaknesses, and weighted aids for dizziness and proprioception.
You sound like you have had a lot to deal with. Some medications can cause side effects, so its risk verses reward.
Hi Lady4, thank you for both of your post reaponse. I will check that article out thank you.
I have not listed or mentioned all of my symptoms as I think I’ll be here until next Xmas…lol.
My neurologist stopped all my so called pain management meds because of the same reason you mentioned about the possibility of them having side effects.
All meds that have been prescribed to me I’ve tried but failed to help. So I stopped them. That’s the same for the most recent too.
Also there is the factor of other medical conditions that I have that require meds, but I have valid reason to of why I don’t take any meds. And I know that I do need some form of meds
I have a unique case that involves communication being the key part, and I can not be dazed, drousey, spaced out etc etc.
I’m partially deaf and use British Sign Language which is why communication is key and meds can not have an impact on this.
yes I was referred to SALT, OT and PT. Doctors and neurologists aren’t listening me has their too focused on my speech, but the funny thing is my voice/speech is never used in my Home environment because I’m only using British Sign Language. OT and PT has not helped.
There is also the school of thought that suggests that pain is generated by the brain, and does not correspond to a physical cause other than that. That does not mean it is not real or 'all in your head' with the derogatory meaning of 'imagined'. For more info, see the Guardian article on the mind body connection (link below) , also the work of Alan Gordon, and maybe in a more digestible format from one of his followers ( an acupuncturist ) at the 'beyondpain' clinic in Bristol.
Hi shimmyaway, thank you and I will certainly have a look at the link.
Tbh, I’m quite surprised and shocked atm with what I’m learning in the very short time since joining the groups.
Please everyone with what I’m about to say so far in what nearly 3 days of joining this site I’ve noticed that this looks like it’s more common in females then males, of which I can fully understand of why it’s more common in females. And please I don’t mean anything sexiest, negative but I mean it sincerely. All responses so far is females. I can honestly say that I’m 100 million % male lol, which I’m thinking it’s more rare in males or us men don’t want to openly speak out about anything like this. I would be very interested if they’re are any men out here are in the group to share they’re insights with symptoms or experience.
It appears more common in women, so the data says but if you take it back to the history books, men we just overworked and stressed, no offence. There are some males in this forum and like you say, I don't think some may want to speak openly about it or maybe not seeked out a diagnosis/answers or not acceptanced it yet.
My son was dx with CRPS and FND, yet I struggle to get him to watch the Education videos I have paid access too, 10 mins of 4 classes on Motor Control (each of 50 mins), so far comes to mind. Refused to attend the last doctors appt, but compromised on a telephone call as it was a new symptom and had been going on for weeks.
Thanks, watching the videos was part of the recommendations from his Re-Active wellness one to one, they are my homework too. When I logged on to do the autonomic class last week to find an answer for another member, I found there were more than 4 for me 🤣
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