Head numbness

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SO, I've been diagnosed with ME/CFS since last year, but probably had it for about three. I've had a lot of weird and unexplainable symptoms but recently I have started getting numbness at the back of my head, normally just on the right side which has been in the right side of my face too once. It comes and goes but often worsens when lying on it, which I can't really get around as I move around and change sides in my sleep. I also had numbness on my right hand side after lying on it earlier today.

like I said, I've had a lot of weird and honestly, terrifying symptoms but this one takes the cake. I went to the doctor about it before along with my tension headaches that I've been getting too but all he did was test me for a stroke and then said it's fine... it's not fine! At this point, I'm afraid to go to sleep incase I wake up numb permanently, or worse, paralyzed.

So, I guess my question is: has anyone else here experienced any scary symptoms like that? Any advice on what to do? I want to go in there and demand he test me further but I am so sick of going to the doctor and feeling like a hypochondriac and then having them not listen to me and say I'm fine when I'm clearly not.

p.s I should say, I also have been diagnosed with fibromyalgia too.

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  • Posted

    Where do I start? As well as the fatigue I have been hit by a barrage of crazy symptoms, including loads of very scary fleeting neurological symptoms, most of the latter largely in the head and face area, however also in my arms, hands and feet. All of these have been "explained" as benign in the sense they are developing into something sinister.....however it doesnt feel like it. So I utterly sympthasise with your terror and frustration. Without saying so I have been told to just live with them. Sounds easy ha ha but my anxiety is through the roof.

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    • Posted

      Thank you for replying. Sounds like a similar situation to me. I can honestly say I have put up with a lot but this is a terrifying feeling and I feel like even if it were "benign" they should be checking these things to make sure? When you have illnesses like M.E and/or fibromyalgia they just say everything's that, god forbid you are on your death bed (which is what it feels like!) and they just let you die.

      Have you thought about going back to doctor to press them further? What kind of neurological symptoms are you experiencing? If you don't mind me asking. Not sure how much more I can take with it, personally. I am young, live alone and have little support and it's such a scary situation to be in.

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  • Posted

    hi there , sorry to hear that you have been suffering for three years now. I have been diagnosed with CFS ME and the first thing I went to the GP about was numbness in my face and hands mostly on the left side . I was tested for s stroke and MS and had an MRI of spine and brain as I lost alot of weight . this was 18 months ago I am very much improved but I still have numbness in my left side face arm and down my, left leg. The best explaination I have found is possible damage to the mylin sheath that surrounds the nerve done during my initial virus which started me on this journey . this explaination makes the most sense to me. hope this is of some help , if only to reduce your fear . I think numbeness and tingling is quite commmon in ME

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    • Posted

      Thank you for taking the time to reply. I hadn't heard of anyone having a symptom like that before with M.E so that's good to know.

      I lost a lot of weight too, as it happens. Strange all these things happening, but they've never pressed further. Thought M.E was diagnosis of exclusion and they could only diagnose you with it if they ruled EVERYTHING else out.

      It's a very scary symptom, how are you coping overall with it? Are there any treatments or relief? And thanks, it has helped a little. Although, naturally I still worry. I think I will go back to doctor and push him to look further with it if only to ease my mind.

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    • Posted

      hiya, I dont worry so much now as I have had all the tests to rule out any other nasties and have been scanned from top to toe , they kept me in hospital for 4 days initially when Icould hardly walk , speech was tricky as much of my mouth was numb. I now take nortryptilline at night for the buzzing /discomfort I get from the fibromyalgia as my dr calls it , it helps somewhat and it helps me sleep which is a biggy as I was lying awake trying to curl up in a ball to get rid of the sensation. I also eat a diet high in vegetables and natural foods ,fermentated foods for my gut, non processed organic when I can afford it . gluten and dairy free and minimal caffiene ...I let myself have one real organic coffee a day it is such a joy , but if I have anymore it triggers my nerve pain and is difficult to settle it down again .. I also try to avoid refined sugar. I say try as I occassionally succumb to milk chocolate , whereas usually I have the odd square of dark. I struggle with temperature regulation, I am always cold.

      I cant say I cope with it well but on a good day I am upbeat and generally a very positive person , but when I have a run of bad days where I can do little but watch the world go by I sometimes visit a very dark place in my mind and feel hopeless. I am a Christian which brings me comfort , I also have an incredibly supportive husband I am blessed. it is so powerful to be able to share stories and feelings with one another as isolation and the feeling of going insane is relieved when you hear someone else describe your symptoms . take care , let us know how you get on . Im A Brit living in New Zealand and there are no specialists here at all I hope you live somewhere a little more helpful . hey but we do have a great ammount of sunshine hours which is awesome :0)

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    • Posted

      I also think you should push for an mri and full blood works to rule anything else out as many conditions can give similar symptoms and so check would be wise in my opinion

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  • Posted

    Hi there,

    I agree with Jan here that numbness/tingling are common symptoms for some. I get numbness in my arms and hands, I have had it in my face and at one point around my mouth where it felt like when you have been to the dentist and you can't feel your mouth because of an injection? That worried me as it creeped in from nowhere. I thought maybe I had something worse but then it went. had it twice in my 7 years of cfs/me. I can't remember having numbness in my head but I have had that weird liquid feeling? like your head ( on top of the skull not inside) is covered in liquid and it goes cold. I also get horrible 3 day headaches, neuralgia and other wild and wonderful symptoms that tests come back negative for.

    You are right in that there is no specific test for cfs/me but, I believe that the diagnosis is after other things have been ruled out? as well as a trigger : virus/trauma etc usually being apparent? I have, like Jan, had MRI of head and now entire body. Nerve conduction test, ECG and blood tests all normal.

    My own journey into cfs/me is from a car crash and I had a fractured spine so , many of my investigations have been from worries about nerve damage etc not being able to lift my legs etc.

    Could you request an MRI for peace of mind? if you do, bear in mind that the machine is very cramped and can be anxiety provoking on it's own. I would recommend earplugs too.

    The downside of a lot of symptoms is that being scared by them adds to them? Working on bringing down the cortisol and adrenaline could help. It is a huge challenge to do this. If you are in the UK ask to be referred to the IAPT service. They can help the psychological side.

    Hope this helps

    Beverley

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    • Posted

      I'm sorry that happened to you, I hope you're feeling somewhat in a better place now.

      I personally think I should have had an MRI years ago, but I do live in the UK and funding for these things is so frayed at the moment. However, if I don't have these other tests I feel as though they're not ruling out other potential causes. It's just so weird how it seems to only affect one side and all the way down to my stomach area. I'm more worried about my head, but it's all worrying.

      What you describe is exactly the feeling. When my face went numb before it felt like I had just been to the dentist. Such a strange sensation, and worrying without knowing the cause for sure.

      Thank you for the suggestion, I will give that a look over when I get the chance.

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    • Posted

      Hi again,

      Yeah, am kind of used to it now I guess? when you say only one side, nearly all my symptoms are on my right apart from the walking issue where it changes 😃 I get a burning ear, cheek on the right sometimes. It goes bright red and is visable to others. my nose and right foot go freezing cold and I noticed a couple of times my right hand/forearm did the same. this was on warm days and I was cooking but the nerve conduction tests come back normal and it isn't a circulation problem. As it's not permanent and nothing shows up, there's not a lot can can be do an expert told me. He was the one who sent me for a full MRI.

      I know it is hard to get referrals for tests sometimes but you can but ask?. that's how I got my referral to the cfs/me service.

      I wish we didn't have to advocate on our own behalf so much. Good luck with it and let us know how you get on?

      Beverley

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  • Posted

    Hi there,

    I have areas on my lower leg and hip (about the size of a side plate) that are permanently numb. It started out with pins and needles that came and went over many months before going numb. My face, feet, back and head go numb, like having had local anesthesia. I visited the Dr on numerous occasions and was checked for a stroke.

    Eventually I saw a neurologist who diagnosed CFS and sent me for nerve tests. I have small fibre neuropathy which can go hand in hand with CFS/ME. I also get a burning feeling on the soles of my feet!

    It all used to frighten the life out of me but five years on I just except it for what it is, know I'm not going to die from it and occasionally moan about it to my husband 😂.

    Sarah

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    • Posted

      Oh wow, that sounds so scary. What tests did you have to have done to diagnose something like that? Any suggestions on what to say to doctor?

      I am very concerned of the possibility of being numb permanently, especially in the head area! It's not like it's painful, obviously, just a horrible sensation. Do you have any coping mechanisms/treatments you use?

      Thanks for replying!

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    • Posted

      I had pads with wires attached stuck on my legs and arms. An electrical current was sent through the wire (not painful, just a weird feeling) my arms and legs then flexed of their own accord which was very strange to see, my body moving without me controlling it 😂.

      The time it takes for the response from shock to movement is timed (on a machine) This rules out conditions like large fibre neuropathy.

      I then had a small biopsy done on my ankle, that tissue was tested (the nerve endings in it) and it showed nerve damage. It was explained to me exactly what the damage was but as is common with CFS I had a complete brain fog day and didn't absorb all the info!

      I don't have any coping strategies. On a good day I laugh it off, on a bad day I cry.

      Sarah

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  • Posted

    Well this is quite amazing. Beta Blockers gave me a whole host of permanent symptoms one of which I described to doctors as :- "You know the numb feeling you get in your gums when the dentist injects you with local anesthetic?, well it feels as if somebody has given me an injection in the back of my upper neck, I get a spreading numbness that goes forward into my head so that my whole head feels numb".

    This isn't from sleeping on it or lying funny, its always there.

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  • Posted

    Hello,

    I'm sorry you feel so unwell, have been diagnosed with M.E/CFS and Fibro' and that your Doctor has been so insensitive and dismissive.

    I hear the panic in your voice. But, you are no one's fool.

    Please be assured, you are NOT a hypochondriac! You are NOT imagining anything. And as difficult as this will be for you to accept right now:

    You are NOT going to become paralysed.

    You have presented with a very complex set of problems. And we cannot separate -any illness - M.E or Fibro' - from the 'whole' of YOU. Fundamentally, YOU and your illness must be looked at together. This is Holistic philosophy. We must TREAT THE WHOLE PERSON.

    You do not state your age but I'm hearing, you are relatively young? (compared to me: 60) So Holistically then, how you live your life: diet, drugs, alcohol or other, previous illnesses, family history etc must ALL be accounted for. And this is not the platform for that.

    Anyone here will empathise with your desperate need for a solution or at the very least an explanation of sorts? Your recent experience has understandably, frightened and overwhelmed you. Sufferers of M.E do not have the energy to engage at length. . . Mental energy can be more precious than the physical. And at this moment, I feel like you are drowning in your own anxiety. This is what you must first deal with before you can deal with M.E.

    You are frustrated, anxious, and frightened to 'go to sleep' but this will only worsen your symptoms.

    You are in a rotten, vulnerable place right now and cannot see this but . . .

    Take a deep breath! Take heart!

    I will tell you a what I can today.

    There is always HOPE.

    I understand how the complex and random symptoms that flare-up can overwhelm you.

    I have experienced similar to you except it was my whole body that 'froze' from the waist upward:

    In bed, alone, last summer - I awoke at 5am to numbness and pins and needles in my hands, it traveled up my arms, my torso and across my chest. I was unable to move for around 1 - 2 mins. This was so very frightening. Like you, I thought that I was having a stroke or heart attack but also, that if the numbness spread any further up my neck - I would choke.

    It happened to me twice within a few weeks - then not since.

    I was 'lucky' in that, my GP was sympathetic but, he none the less smiled wryly and said, NO, I would not die from those symptoms. That they were more common than we know, and particularly with 'M.E and other neurological conditions' such as for E.g., M.S, Parkinsons, Epilepsy etc.

    WHAT THE HELL IF M.E?

    Put simply: the brain is inflamed. It is OVERHEATING. The immune system is in 'overdrive'. It has malfunctioned and will not switch off. This 'overheating' causes the inflammation and thus the resulting symptoms.

    When you feel calmer and feel able to listen, look at this:

    YouTube: ME/CFS Involves Brain Inflammation, results from a Ramsay Pilot Study. It's heavy info' so I'd advise going in at the 20th minute . . .

    That said, you are at the beginning of your 'journey' and may not be ready to accept any of it. I firmly believe, that we only 'find what we need' when we are 'ready' for it. Perhaps that's too much philosophy - back to reality! 😉)

    I can tell you, that your random and frightening symptoms will ebb and flow, more so after activity: mental or physical. In time - you will come to recognise this - but it will take time. Also, your symptoms may not present until perhaps 12/24/36/48 hrs after the activity!

    THIS IS M.E.

    You have been diagnosed with an illness for which, there is presently no cure. 5 yrs on for me, through being strong, positive, accepting life-style changes, good management, targeted pain relief and holistic therapies, I have improved but yes, plateaued, as is common at the 5 yr mark. . .

    FIRSTLY in the immediate term for you, I would advise medication or, holistic or orthodox therapy to tackle your anxiety and the sleep deprivation you will experience. There is NO QUICK FIX. But, YOU WILL - SLOWLY - MAKE PROGRESS.

    I personally found sacro-cranial therapy and qi-gong movement/meditation to be a brilliant all round help, hard work, hard won. In addition, for sleeping and reducing inflammation 10% CBD oil (expensive but you are worth it!) dropper or spray to suit your needs; or, much cheaper, Valerian (natural vallium) bought in any shop, Oil of Evening Primrose or Star Flower caps also aid inflammation. A 10mg Histamine tab at bedtime - wonderful!

    NB: Some take anti-depressants that may help with pain and sleep but not for me.

    ONLY YOU will come to know what affects you - and what benefits you, through exhaustive - trial and error. It is a long job. There is no way to wrap this up. It will require a huge amount of effort on your part. EFFORT that you will not always have the ENERGY for. And you have to LOVE YOURSELF enough to do this. Be your OWN BEST FRIEND, to get through this.

    What to do right now? TODAY?

    The anxiety which you obviously feel will only exacerbate your symptoms.

    DUMP the anxiety. TAKE CONTROL. BREATH . . . be kind to yourself.

    I hear intelligence and strength in your email - USE IT!

    Medics knows little more than we do. The research just isn't there. M.E is unfortunately used as an 'Umbrella' term for anything and everything that the medics cannot understand - or as yet - prove.

    FINALLY, you are right to say, 'It is not OK.'

    CHANGE YOUR DOCTOR. ASK AROUND to see if any GP near you has researched neurological illness? Look for therapies or classes to alleviate your anxiety TRY ANYTHING, START SOMEWHERE. Is there a support group near you? Join the M.E Association! This feed is all very well, but I feel you need ACTION!

    There is ONLY YOU who can instigate that.

    Writing this has taken me all afternoon. I will suffer for it tomorrow 😮))

    STAY STRONG. AND GOOD LUCK!

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  • Posted

    I also get numbness and always in the same parts of my body - left side of my face, the bottom of my right leg and my left arm. I was told by a doctor that is might be due to nerve damage caused by the glandular fever I had which triggered my ME/CFS. I also sometimes get a peculiar sensation like the top of my head is numb as if I'm wearing a really tight hat. I used to get really stressed out by it but have realised that letting it get me stressed is just draining my energy and doesn't make it go away so there's no point. You could maybe try distracting yourself with something when it bothers you. Try not to worry too much - you're not alone!

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