Can't remember life before nummular

[nolifenow]

Hi my husband has suffered with nummular headaches for 4 years. Excruciating pain that nothing seems to ease. Every single night he is woken up by this pain then feels dreadful the next day and not wanting to go asleep again because that's when the pain starts. He used to see Dr Crossburn at Poole but now sees Dr Vajramani in Southampton. He has had a few treatments but still suffers nightly. He's had scans etc. Our lives are on hold and we cannot make any plans. Sometimes they come on during then day, even when he is totally relaxed at the beach, out walking etc. Seeing him in so much pain is dreadful and so frustrating because I cannot do anything to help him. Both neurologists have told him there is no known cause, nor cure. I feel for all those who are suffering these life destroying headaches. Unless you know someone who does, you simply cannot understand the intensity and power of this pain. I cannot imagine what they are like. You'd think that in 2017 someone somewhere would have come up with a solution. Here's hoping.

[Cb1963]

Hi nolifenow, sorry to hear that your hubby has these cursed headaches, I've been suffering with what I can only describe as skull crushing headaches for around the same time, and they are so powerful that they wake me up, just had a ct scan recently so waiting on the results, but in between I've been prescribed a drug call ritratriptan, and for me it stops the headache going into the full blown version, the headache always starts in the same way and the pressure is unreal, and even my eyeball "squeaks" with pressure behind it when I press it, and my nostril gets blocked, I know when the headache is going as my nostril starts running, always the same side of my head and always the same place, and I can get 3/4 per 24,hours, so yes they cause so much havoc on day to day lifestyle and sitting at the end of my bed rocking with my dressing cord tied from my jaw to the top of my skull, with tears running down my face with the pain, and I think I might of taken an accidental overdose with to many over the counter remedies last year, as I was taken into A&E with an internal bleed, so your quite right for your poor man to feel for him,I'm a male in my mid fifties and feel the pain factor is right at the top end of the scale,so my symptoms are very similar, but the medication does seem to stop it getting into the mother of all headaches, best wishes to you both, and I'm not going to say man up about these headaches as they are brutal, so sympathy to your fella, ttfn

[nolifenow in reply to Cb1963]

Yes your symptoms are very similar and I cannot imagine the pain. My husband takes zolmitriptan which if taken immediately does stop him pulling his hair and banging his head hes ib his early sixties and was first diagnosef with cluster headaches but more recently nummular a little known head pain. Known cause and no known cure. He's having another treatment friday so fingers x it works.

[Cb1963 in reply to nolifenow]

Just written a monster reply and it seems to of disappeared, I've been trying to do so home work and I'm currently having to have vitamin b12 injections, I believe this can be relevant to headaches, but I'm really clutching at straws, so maybe get his blood checked regarding vitamin b12, I'm no further forward regarding any diagnosis,and at the moment I'm headache free, but they just come on out of the blue, so tablets are always to hand, sorry that you're fella is suffering and these headaches go to the very top of human pain threshold so it's a horrible situation and my sympathy to him, it's up there with any pains that I've had before and cause it doesn't present any visible effects people think your just trying it on, NO WAY! suffering like this is a pretty miserable existence and can drive you to the very edge of life, so it's a serious situation, so only those closest understand, so I wish my best to you both under difficult circumstances and hopefully not to many attacks, take care, best wishes

[nolifenow in reply to Cb1963]

Hi

I know it's been ages but I was wondering if you are still suffering those indescribable headaches.

My husband is unfortunately

Regards

[Cb1963 in reply to nolifenow]

Only just got my phone back from repair, yes I'm headache free, I'm confident that it was the vitamin B12 injections that has "cured" my problem, I haven't had a single one since I have been having the injections here started, hey I'm sorry to hear your fella is still suffering, man he must be at his wits end with these brutal headaches, ive had various illnesses and this is the top of the list for pain that got my crying, absolute agony, my best wishes to you and regards to your husband it's a minefield trying to get some relief, I wish him a headache free future if at all possible, ttfn.

[nolifenow in reply to Cb1963]

Thank you so much. I am SO pleased something is working for you at last. Long may it continue!

[lupus_01]

This sounds more like tri geminal neuralgia. My husband suffered for a few years with this before having surgery which cured him. He was suicidal before the surgery.

[nolifenow in reply to lupus_01]

Hi

My husband still suffers excruciating nummular headaches. Did your husband have an implant? This has been discussed at Southampton but nothing more has been said since the new year. I am so very pleased your husband is now pain free and yes my husband too has felt suicidal with the pain.

Keep well

[lupus_01 in reply to nolifenow]

Husband had what was described as a clip implanted in the back of his head and it cured his tri geminal neuralgia. Apparently it is the "gold" standard treatment for TGN.