I don’t think words are quite enough to explain how sick I am of this wretched headache. It lurks, it hangs around, it’s always there – what does it want from me? I just wish I had an answer. I still remain firmly convinced that there must be a reason for this pain. If your body is screaming out, it’s telling you something is wrong. But what?
The neck scan I had a while ago came out fine. No surprises there. I have been seeing the kinesiologist regularly and had some ups and downs since one of our most intense sessions a few weeks ago, when doing some work on my jaw. Could it be the teeth grinding? I had my jaw professionally checked years ago at a dentist’s clinic when the headache started. All manner of little prods and machines were placed around my mouth but all the results came out negative. I thought I’d go and get checked again, as after over four years of having a constant headache, maybe something was going to show up.
“Eat softer foods and come back and see me in two months” is what I heard. I nearly asked this “TMJ specialist” who, may I point out, is younger than me (hardly much of a specialist), to repeat. “I have had a constant headache for four and a half years”, I tried to explained to him. “I don’t think it will mysteriously disappear over the next two months, as much as I’d like it to.” And so I left, clutching a pointless piece of paper with an appointment to go back in September.
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Thank you PH for your blog... I belong to an association of french patients (Papillons en cage) generaly suffering from permanent headache, some for very many years. I am Marc and mentioned your blog to our "chairman" Benjamin (benjamin.lisan@free.fr)... relying on my practice of english, he asked me to invite you to contact him if you feel like it, in case you would like to exchange experiences, opinions or feelings... He has written quite a lot on TTH...
ReplyDeletehttp://fr.wikipedia.org/wiki/C%C3%A9phal%C3%A9e_de_tension
We wish you to find a cure or reach to some significant relief...
Your's friendly
Marc
Thank you for your message, Marc. I am just about to contact your colleague. Je parle français donc je vais lui écrire en français! Merci bien.
ReplyDeleteMerci PH, bravo pour votre français... Benjamin m'a mis en copie de vos échanges. Bien cordialement. Marc
ReplyDelete1st I would like to say hello. I have been stopping by your blog since i think around day 10. My clusters started about 5+ years ago now and I found your site one night while looking for more pain info.
ReplyDelete2nd have you ever looked into ketamine as a pain reliever. it works wonders for me and is dispensed at such a low MG dose that it does not interfere with day to day activities. Also if you have not already.. I know you don't have cluster headaches but you should come by http://clusterbusters.com
there is a lot of good info and the methods have been shown to work on all manner of headache not just clusters. Hope you find some help
keep up the blog it has wonderful info in it.
-defective
I was diagnosed with NDPH last year (it has been now over 5 years since it started). I found your blog then (while doing some research) and felt a connection for the way you describe your chronic pain. I would force everyone I know to read some of your passages which describe exactly how I feel.
ReplyDeleteFor the last 2 years I decided to go off meds and treatments after trying a never-ending list of them and having lost hope with the doctors I had been seeing.
After passing the 5-year mark I am inclined to think that I will have to live with this forever and I find that emotionally challenging so I have recently convinced myself to find something that helps me cope with my headache.
I am curious about trying kinesiology and acupuncture but don't know where to start. Most of the support group at MDjunction is based in the states but it seems you are based in London too. Any advice would be really appreciated.
Best wishes,
Luis
Hi Luis,
ReplyDeleteThanks for your message.
Yes, the kinesiologist I see is based in south London - you can contact him at kinesiology@gmail.com Do give it a try for a few sessions - I certainly think it's worth it. Will you let me know how you get on?
I am also about to reach the five year mark - not a happy prospect, but I will continue to search for a solution.
Prostaglandins is one of the migraine causes. Ginger blocks Prostaglandins. It also alleviates migraine symptoms such as nausea and headache.
ReplyDeleteThank you, I will give it a try and certainly let you know how I'm doing.
ReplyDeleteHey, I have been reading your blog for sometime. I can really empathize with you. I have my headache now for nearly three years. It really grinds you down don't it. I am sick to death of the disbelief that I encounter all the time from people. It's amazing how many people think I'm exaggerating, they just don't believe you can have a headache that is 24/7. I like you continue to try to cure my headache, it has cost me thousands. I'm also in the UK, good job I don't live in America as I'm convinced I would have blown my head off by now. Keep up your good work !
ReplyDeletemeet again,
ReplyDeletei tried lemongrass dipped in hot water..or try its essential oil diluted in water and drinked...i fond its calming my headache..google it..
I was recently diagnosed with idiopathic intracranial hypertension. Thought for the longest time i had Sinus related headaches..countless doctor visits n nothing. Then i went for a routine eye exam where they took pictures of my eyeballs/optic nerve. Immediately was sent to an opthomoligist. now i am seeing a neuro opthomoligist. Glad to be finally taken seriously and have a diagnosis.
ReplyDeleteDigital Motion Xray. Atlantoaxial instability. Ligament instability c1 c2. After 2 years of constant pain and countless doctors and opinions. I may have found an answer. Negative in all films and mri's until the digital motion xray found my ligaments had been compromised. Good luck evryone.
ReplyDeleteHello, I stumbled on your blog while looking at Occipital Neuralgia, and I think I may have 4 options that you haven't tried yet. If you want more details or suggested ways to handle any of these, let me know and I'll post some contact info.
ReplyDelete1. Muscle development/atrophy/posture issues: For example, if your Trapezius muscles are significantly underdeveloped it can cause tension in the head, which can lead to long term pain.
2. Muscle Tension: The body has a tension scale which it increases when it encounters or expects pain and damage. If you are at the top of this scale, when you encounter damage you experience the full amount of pain instead of your body adapting.
3. Circulation: If you traditionally have cold hands and feet, you have poor circulation. The body requires good circulation to efficiently heal the extremities and anything considered non vital to live. Without it, just minimal damage repair will be done to get you into a functional state, instead of getting you to a healthy state.
4. Rest quality/Spine alignment: If your headache intensifies as you lay down, you could be putting more than resting strain on your neck/spine/head.
Good luck with the headache!
Another suggestion from me, is that after the 5 year mark, I decided I was spending a lot of time looking for a diagnosis. And it wasnt getting me anywhere. A new specialist suggested why dont I just try a few things, as sometimes your reaction to the curative treatment is just as informative. He was surprised after this long my GP hadnt just tried me on things like a course of antihistamines, a course of antibiotics, and he even tried me on a short course of steroids (as there had been suggestion I could have an inflammatory based illness). Your posts suggest you prefer the natural approach, but after this many years I dont rule many options out. Whatever gets me there. So I tried all these - they gave no improvement at all, but that in itself is a diagnostic step to rule out many things. Why I mention that here is that diagnosis for TMJ is a hazy zone, so I just decided to do what I would do if I had it. I listened to my dentist and got a mouth guard fitted. I tried that for a couple of months, but it wasnt the answer for me. Also I tried some TMJ exercises - this one is simple but I found I really did feel a bit of improvement from doing it regularly: http://www.ouh.nhs.uk/patient-guide/leaflets/files%5C120417tmjexercises.pdf
ReplyDeleteI can feel your pain. I suffered from atypical migraines from a horse related in jury 5 years ago. This was my answer. I wish more people could be helped. I believe in this doctor so much I made a page for him on my website and here it is, good luck.http://enjoyocala.com/blog/dr-joel-franckneurosurgeon-diagnosis-and-surgical-treatment-for-migraines/
ReplyDelete