Nummular Headache is hell

Has anyone else found a solution for this hell

my grandaughter has it and nothing touches it day after day she is suffering and it disturbs and sleep too

she is like a crazy zombie on gabapentin or amitryptaline

is awaiting 2 round of Botox but 1st round had little effect

.if we cant find a solution i am really scared for her future

there so little written about it on internet and what there is makes it sound trivial and easy to treat which clearly is total nonsense

20 Replies

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  • I've never heard of it. Can you tell us more ?

  • Never heard of a Nummular Headache either RFU123.

    Has she had her bloods checked for deficiencies ? also vitamin, mineral deficiencies ? (Just a thought.)

    Also brain fog (as in B12D or low thyroid) can be likened to a constant headache.

    Again just a thought.

    Also check Grandaughter's medications ? (all medication has side effects,)

    Hubby was taking an Asthma drug to help his asthma and it was making his asthma worse.

    What has her Doctor said about it ?

    Coast.

  • Has your Granddaughter had an MRI or CT scan to diagnose the Nummular headache?

  • Nummular headache is very specific "rare form of headache " also called coin shaped headache because it normally occurs in a small coin shaped area on the pareital area of the skull giving a non stop dull headache interspersed by sessions of "fireworks " where the nerves fire off for minutes or hours and wake you from what sleep you might get . Not one single pain killer or anti epileptic meds etc touches it and the only thing you can do is lie down and wait for the fireworks to stop meanwhile life is down the tubes .Its happening almost every day now

    What little there is in research is only available via impossibly high paid subscriptions to Neurolgy publications

    It hit her at age 16 immediately as a result of being hit on the head in that spot

    She has had every test , CT scan MRI scan going over course of 3 years

    The paediatrician even apologised for the hopelessness of entire medical profession to resolve or even diagnose it ,,,,,,,,,,that really is a 1st

    It took me 6 months to find out the name of top Neuro Consultant to get her referred to

    but irrespective of all that a teacher dared to tell her "its all in your mind "

    She also has Hashimotos hypothyroid to contend with and should have been going to Oxford to study in 2016 but that's in very serious jeopardy now.

  • So sorry to hear about your Grandaughter's plight RFU123, that is a tough one and certainly not 'all in her mind.'

  • Massage the muscles on the head and neck. The tiny muscles on the head need to be uncontracted to allow proper flow of blood through them.

    If you have not learnt how to massage then find a local course which can teach you the simple techniques. I have mentioned one possible cause for the symptoms. There are other possible causes which lie in the area which needs input from a medical person. So be safe and make sure that a doctor checks the condition to make sure that nothing untoward is causing he problem.

    Hope this helps.

  • Hi,

    I have, what I believe to be, the same issue. I got into a car accident two years ago which caused my head to hit the drivers side window. 6 months following the accident I've had this pressure in certain areas in my head on the side that was hit. It kept me from sleeping and was just overall uncomfortable everyday. At times it felt like my head was going to burst open. I began to massage the area, and though it helped, it didn't bring as much relief as I had hoped it would. I eventually bought a knobble after continuous reading on the internet. I found one person with a similar issue and they said that they used it on their head and it brought them releif. For $9 I figured I'd give it a shot. It's been about a year since I've gotten it and used it everyday and I have to say it really saved me. My head feels so much better that I am extremely grateful that I came across that post. I know what the pain feels like so when I read your question I felt that I had to sign up just to pass along the info. You can find one here

    Make sure to apply a steady pressure and find the tender spots on the head. When you find the spot massage it out, dont press hard though. Allow your head to do the movements as you hold the knobble. Over time the spot may bulge a bit, each one of my spots did, but eventually it will go down and the pressure should subside. With time and a lot of patience it should help. I wish you luck!

  • We are in the UK and theres loads of different ones on Amazon.co.uk and typically they are way more than $9 but that's the UK

    Which one did you buy ?

  • I got the knobble ii. They are on eBay as well

  • If you can't get the knobble I also found that the eraser end of a pencil works well too, as silly as it may sound and look. Find the sensitive spots and apply pressure. It's definitely worth trying. Keep in mind that she has to do this for a period of time before she sees results. Like I said it's been about a year, and though it's improved significantly, I still feel slight discomfort. I figure another 6 months before it's gone completely.

  • Not content with the Nummular headache now she is told she has a neuroma as a result of the head injury

    She cant sleep

    Nothing touches the headache

    She is extreme pain

    The medics are totally and utterly useless

    Her life is in ruins and the idiots who caused the injury really do not care

  • I have had a Nummular Headache, mine involves the trigeminal nerve, I have had the most success with Tegretol.

  • Tegretol is Carbemazepine she has tried that and is very ill on it

  • Now I really will scream ..........she saw another neurologist this week who rudely told her

    Primary stabbing headache is common after concussion .....JUST GET ON WITH IT YOU HAVE IT FOR LIFE take a cocktail of the drugs you have already tried that made you so ill with all their horrendous side effects

    You are NOT TO TAKE pain killers .....the only one that works is morphine !!!!!!!

    This poor kid is 17 years old and to cap it all the lousy rotten idiots whose negligence caused the injury who were repeatedly asked for their insurance details over many weeks after the incident have not told their insurance co so no compensation for all the costs , medical bills or the hell her life will be and no chance of a job will result

  • I've been getting these headaches for 23 years when I totaled a car in a rear end collision. The accident was my fault and I've been getting these headaches ever since. Lately, they've increased in frequency and duration coming on gradually as a tingling sensation behind/above my right ear (something that I now know is the beginning of a crummy day) that over the course of a couple of hours progresses and escalates to a level 9 if I so much as touch my ear or mess with my hair. For me what works is 10mg Valium, 10mg Flexeril, and Fioricet which is 50mg Butalbital, 325mg Acetaminophen, and 40mg caffeine. I then lie down with the right side of my head on an ice pack and give it an hour. If I'm fortunate enough to fall asleep, I may awaken to discover that it's gone but I end up feeling exhausted for the remainder of the day. On the plus side...I sleep very deeply those nights. Understand that I've had a 17 year doctor-patient relationship and these medications aren't doled out willy-nilly. He trusts me not to abuse my medications and I don't. Finding a new doctor who understands is challenging as they don't understand the frequency of this type of headache and seriously underestimate it's ability to sideline your whole life. If I had all the money from missed work time over the years, I could go to Fiji. I'm not recommending this for anyone, I'm just stating that it works for me. Best of luck.

  • sadly the stabbing pains that my granddaughter gets are several times every single day along with a background 24/7 headache that has morphed into a 14 week long full status unremitting migraine complete with vomiting so severe she had to be admitted to hospital for 3 days each time and put on a drip

    She has tried a selection of meds but she is either suicidal or like a zombie on them and the Top Headache expert in the world has effectively banned her from taking them as they would wreck her brilliant brain

    Botox injections make no difference

    a special way of doing an occipital nerve block has alleviated the migraine a bit for last 5 weeks

    lidocaine infusion stopped the stabbing pains for a short 48 hours

    now waiting for IV DHE which its hoped will work but we do not know for how long

    and in all this last 2.5 years the idiots that caused the injury are still trying to claim its not their fault !!!!!!!!!!!!!!!!! If only it was their daughter who was suffering they might see the other side

  • I wish I could tell you I wasn't familiar with Nummular Headache, but I was diagnosed in May 2015.

    I had a very sudden onset about a quarter in shape over my left temple of a stabbing pain. My baseline pain level is a 2 but I can flare up to 8+.

    I've tried many meds but unfortunately- had very poor response. I've had 5 Botox treatments and my last one my neurologist put 35 units over the area of my headache. It's been the exact same spot for over a year never radiates, moves, or changes except in severity.

    I was inpatient for 5 days with IV DHE with no response.

    Nucynta is a narcotic aimed at nerve pain (used often for diabetic neuropathy) and it helps keep me out of ED for pain relief. Also infusions of Toradol, Magnesium, Phenergan, and Benadryl help as well. I usually get an infusion with severe flares and also proactively once a quarter.

    Mt. Dew and icing also helps to keep flares at bay, but it's had a severe impact on my life as well (I'm 32). I'm treating at Mayo Clinic- and unfortunately there's just not much known.

  • very depressing that's for sure

    but I understand nummular will be in parietal region not left temple

    Grandaughter now diagnosed as Post Traumatic chronic migraine whether that's right or wrong who knows ....DHE infusion planned so we shall see

    Only thing that aleived the stabbing pains was IV lidocaine but only for a couple of weeks

    The other meds you mention not available here in UK and she has had such horrendous reactions to every other neuro or anti depressant med tried that she has been told they are not to be taken

  • I don't know if you are still reading these but I have had this for three months (just diagnosed) and have been put on Topiramate which is an epilepsy drug and accordingly to my Neurologist I need to get up to 200mg a day gradually before the pains will go and then stay on them for a further three months to ensure they stay gone. He has had great results with this and has seen several cases of nummular headaches he even gave me a quick talk about them and I had to go back and explain what they were to my GP - no idea whether the pills are going to work as have only been on them for 3 weeks and the pains are still the same but he did give me confidence. Sending my love and support to your Grandaughter and hope this information helps her. My Neurologist name is Dr Mark Cossburn who specialises in migraine and neuro inflammatory disorders and works out of Poole and Bournemouth Hospital in Dorset - hope this helps.

  • She has tried Topiromate and was like a zombie !she has reacted very very badly to every single so called neuropathic drug there is

    She is under the worlds top headache guy who insists its Post traumatic chronic migraine

    She underwent a week of utter hell on Intravenous DHE probably as bad or worse than chemotherapy but its made no difference she has a 24/7 mgraine 7/10 severity accompanied by the bouts of stabbing pains which wake her from what little sleep she gets

    She should have been starting a law degree at the top university in the country but right now everything is out the window because she has no semblance of life only unremitting pain 24/7

    No idea about the consultant you saw but her sister has been treated very very badly by that hospital

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