Mystery illness

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Hi folks

Im 32 and for the past year or so I've been getting lots and lots of weird symptoms and despite numerous specialists and visits to my GP they haven't cured me. I've posted on a few different forums and a few people have said it could be an autoimmune disease so I'm on here to see if anybody has experienced the same symptoms before I can and see my GP.

So no two days are the same. I get good days, bad days and very bad days. Lots of weird symptoms which I'll list. Generally I get some version of what I call weirds every day. Sitting and then out of the blue my brain will start doing weird stuff. Very hard to explain but it's like a woooooo feeling in my brain? And a feeling that something is wrong. Most of the time it's intermittent. In and out. Can get like 30 of these per day. Sometimes none per day. Brief less than a second. If I get a bad one then it will be full blown and last for about a minute which is then followed by sweats and bad nausea usually where I b sick and diarrhoea and then I b shattered and need to sleep. It helps if I take diazepam and a cyclizine (anti nausea). Then I have the other version of it where I get random stabbing pain in my head, nausea, weirds, pressure across my nose and eyes, stiff and painful neck and extreme sensitivity to motion eg going down in a lift, lift jerks at the bottom and then it feels as if I am free falling. Lying in bed with my gf and she moves and it feels like I am on a boat in a storm. I would get a feeling of my right arm is being grabbed, sorta nervy type and then my left leg,

pins and needles and feels numb. I would generally always be shattered and I'm sleeping a lot more than I would do.

General symptoms.


Random pins and needles.

Pins and needles in my face usually right side.



Random pain, generally the random stabbing in my head.

Extreme sensitivity to motion.

Legs feel unsteady.

Pressure across my nose and eyes.




Electric shocks across my torso which make me jerk.

Lack of sleep and stress and temperature seem to be a factor.

So since this has all started. I have had multiple referrals. Heart has been tested and is fine. Neurologist seemed to think it was seizures and put me on anti seizure drugs. NHS being what it is I'm 3 months over due to see them again. Anti seizure meds didn't work. I've had my stomach checked out and I have a large hiatal hernia which can explain the torso shocks -oesophageal spasms. Have been referred to ear nose and throat department as it could be meniere disease. Still waiting. I have disc trouble in my lower back and i do seem to be worse when I am in work (desk job) so could it be posture related? Allergic to work? Something to do with the pc screen? GP has said the bad headaches are migraines so could it just be as simple as that?

Any help or advise greatly appreciated as I'm at the end of my tether with all this and in the morning I am ringing in sick to work as I've had enough



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  • Posted

    Many of the symptoms you are describing are similar to chronic migraines.  I have been having multiple symptoms for 10 years which were finally diagnosed as 2 conditions - chronic migraines and psoriatic arthritis.  'just' migraines can be completely debilitating if you dont realise what is going on.  I was a Principal of a large secondary school 11 years ago - since then I have been only able to work 3-6 hours a week.  I am often home bound.  Not knowing for 10 years was very destructive - i wondered if it was all caused by my head - a psychiatric condition with any lables - then I was finally diagnosed and put on medication for both.  My journey is still pain filled but now I have a bit of control re drug taking and so it feels less awful.

    ?I had never in the 10 years thought I was victim to 2 conditions.

    ?I was shocked and completely unaware that migraines could happen like I was experiencing.  Nor did I realise there are medications that can be used to control them.  I have gone from migraines 4 - 5 times a week, to, at the moment 2 weeks clear of a migraine

    ?PA is less under control but at least I know what is happening.

    ?So my response to you is listen to your body seriously - dont underestimate migraines and keep persuing medical avenues to find out what is wrong. 

    ?If it is worse at work, it may not be the job, it may be that your health cant cope with what you are trying to make your body do.  Giving up my career has been one of the hardest things for me..... but in the end, I had to let go

    Be kind to yourself....

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  • Posted

    Free falling sensation is usually anxiety.  Can't speak to the other symptoms but wonder if you have some sort of inner ear problem.

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  • Posted

    Some of these do sound similar to anxiety and panic attacks . Wondering if you are feeling fear that's causing some of your symptoms . The shot of adrenaline that brings in panic attacks can have significant symptoms that you describe

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