"Just as sure as the sun comes up, a person living with chronic pain will have good days and bad days. The good ones are good but the bad ones,
...Oh Boy!
Chronic pain consumes your every thought, your entire being.
Nothing hardly can enter your mind but getting this beast under control. Control is what the chronic pain sufferer is seeking and nothing else.
You are desperate for others to understand what and why this is happening.
They think that you are faking or that you are seeking sympathy because you can’t be hurting for that long and have tried everything the doctor has given you.
It makes you feel lost, disconnected or even alone.
Chronic sufferers aren’t mad at you, it’s the pain they are angry at. They lose so much of their own identity."*
*http://www.families-and-chronic-pain.com/whatischronicpain.html
I cannot believe it’s nearly been three years.
In the past few days the headache has increased to a 4/5 out of 10. For the first time in months.
Why?
And as usual one forgets what a bloody nuisance it is having a strong headache. How you think about it every second and how it gets in the way of what you’re doing. How it makes you more tired. How you just want to lie down and close your eyes and hope the pain will go away. Hope that the bitch of a headache (excuse the language but this is what I refer to It in my thoughts) goes away.
I have tried being ‘nice’ to It, tried being ‘friends’ with It as I was advised to do a couple of years ago. ‘Befriend the headache!’ Well, I have tried and it makes no difference. It is driving me up the wall. I cannot stand it anymore. I hate it. If it were alive I would shoot it. Squash it. Kill it.
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Hello, I just found your blog linked from reddit.com. I've had a permanent headache now for over a decade, and I must say your site is quite the inspiration. Years ago I gave up and decided to just live with it, seeing as nothing worked to get rid of it. But now I think I may try again. Thank you.
ReplyDeleteSorry to hear that:( But once it has already been much better, there's hope it's goona be much more bearable again!
ReplyDeleteHey, how do you get through your days? That's inspiring. Laying down makes my headaches worse and reading or studying or playing computer games makes it feel worse too. I can't do anything. I'm just a kid (well, 16 in a few days) and I want to do so much with my future but my head makes me feel so doubtful and useless and worthless.
ReplyDeleteI'm getting a C.T scan on my birthday though (few days) but I'm afraid that will show no results. Hmm. Hope you are coping well and getting better. Take care.
I've had a headache every second of ever day since February of 2010. I am not sensitive to light or sound nor do I throwup. I just have a pain in the center crown of my head that will not go away. It has constantly been at a 7, but will rise to a 10 on bad days--like weather changes. The pain has never gone away.
ReplyDeleteLooking through your blog, I've gone through much the same stuff as you have. I've been tested for most of the things you have, including having spent 9 days in the hospital and 4 rounds of botox and TONS of medicine. Most ALL of the things you have done or been tested for, I have too. Seriously, almost ALL of it. It felt like you were in my head.
Finally.........after all this time......I am getting some relief. I went to see a homeopathic doctor who uses EAV Testing. (electro dermal screening) It tests the accupuncture sites on your hands and feet and shows when something is out of wack. I could actually see on the screen when something in my body was screwy. The medicines for homeopathy are all natural too, which was a nice change. Now, after going only three times (my 3rd visit was 4 days ago) my pain level is at a 2 for the last few weeks and overall I'm just feeling better. I'm confident my headache will be gone or at least at a 1 by my next visit in 6 weeks.
This is truly amazing because it's the first time anything has ever, EVER helped my pain in like 19 months. I'm only 22 and was thinking my life was over. Now it's not. :)
I hope you try it out. Your site has really helped me, and I hope your headache goes away like mine is hopefully.
Hi, thanks so much for sharing. How curious to hear that you have been tested for most of the things I have (what a nightmare, hey!)
ReplyDeleteI'll definitely look into EAV Testing (hadn't done that one!) - out of interest, may I ask what the outcome of the session was? What did they say was the main problem? Which acupuncture points?
Are you based in the UK or in the US? If in the UK could you kindly tell me where you went for the testing?
Thank you!
Three year headache sufferer here.
ReplyDeleteI haven't read through your entire blog yet, but I'm sorry you've had occasion to even write it. Thank you for doing so, however, and letting the rest of us know we aren't alone.
I was given a diagnosis of Hemicrania Continua. I was previously given a Trigeminal Neuralgia diagnosis, as well. I suppose the docs really just want to give me a name for it because I keep asking for one.
I don't think there will ever REALLY be one.
Indomethacin and Topomax has been what's worked for me, which has given me the HC diagnosis. It has only worked about 80% but that's the best result I've had so far. It's WAY better than previously, so I'll definitely take it!
Good luck - and please keep sharing!
I'm the poster from earlier that is trying homeopathy....
ReplyDeleteHaha, I've been on Topiramate for the last 19months and I've never been able to tell a difference being off or on it. (generic form of Topamax).
"what a nightmare, hey!" And yes, Permanent Headache, a complete nightmare! and eerily scary how similar we have been. Sometimes when my mom asks me how I'm feeling about something I'll just point her to your blog. ha!
Well, of course with our bodies there is never going to be ONE MAIN PROBLEM that just started it all. Yes, probably something that triggered the headache to start suddenly but things in the body had to accumulate and build up to eventually all point towards it. When I was 13, my spleen enlarged to 3x the normal size for 6months before getting to normal and they NEVER found out why. When I was 18, I had bells pallsy on the right side of my face for a few weeks. Maybe these were just a few signs of 'something' in my body malfunctioning but never fully triggering until my body finally reached that level and the Headache happened and continued to happen.
When my homeopathic doctor tested me (she tests accupuncture points in the right hand and foot) some of the main things she found out of wack were my gallbladder, heart, brain, adrenals, pituitary, lymph, and liver. She also checked for toxins. Surprisingly, one toxin that popped up was neurotoxin in my brain from Vaccinations as a child. Also, I was high in copper. I have been taking homeopathic medicines and remedies for the organs and detoxing for the things she's found, and like I said--I am so much better. The last few weeks I have been a level 2, and surprise, the last couple days a 1 & 2. :) I even went to a concert on Friday!
It kind of makes me upset because I thought there would just be that ONE ANSWER as to why I got a headache that would never go away, and this seems like an accumation of things. I'm still upset about that because I still want an answer other than 'everything finally piled up and hit at the exactly the wrong time altogether'....but you know, I think I'll just have to let this one go because I truly am so much happier feeling better even if it's still in the process of going away and I'm still taking 16 pills a day and 60liquid drops. Because I feel better! =D
I'm in Southern US, sorry. I hope you are able to find something to help you like I have, because your blog has helped me. And if you do find someone who does EAV Testing, I hope they actually DO it and aren't a quack because mine sure isn't.
So I wrote that ^^^^ a few weeks ago and it wouldn't post for some reason. An update though...I have been a little worse the past 3 weeks and my meds have changed now so I should be back on track again. But I do have to say: The WORSE I have been recently is BETTER than my BEST before I started doing homeopathic medicines.
Hi Tardis2007, thanks for your all your comments - do keep on sharing. So glad to hear you're feeling better and that the homeopathy is working for you too.
ReplyDeleteI don't think there ever will be just one answer.. part of me believes I will find one but deep down I know I won't. I think it's a combination of things that have ended up causing a horrible headache that is set to stay.. let's just hope they leave us soon.
Let us know how you're getting on!
I first came across your blog more than a year and a half ago. My headache history began with migraines in high school (ten years ago) and continued in the form of brain fog and dull pain around my eyes. I've tried many of the remedies that you wrote about and saw a variety of practitioners, but nothing could get rid of my mysterious malaise. Last week, I redeemed a Groupon for a chiropractic wellness exam and massage, and after getting X-rays taken, the doctor told me that I had a subluxation. Basically, my atlas (first bone of the neck) was dislocated, and after just one adjustment this past Tuesday, I could suddenly see and think much more clearly. My doctor said that she also used to get headaches but haven't had one in the seven years following her own adjustment (this prompted her to enter the field so that she could help others). Anyway, I remembered your URL and wanted to share this information with you. I haven't re-visited this site in a year, and I'm sorry to find that you're still in pain. If you haven't tried chiropractic care yet, then please consider it. I hope it works for you as it did for me.
ReplyDeleteThanks for your kind words and for sharing your experience.
ReplyDeleteI saw an osteopath at the very beginning but I didn't see any results. I also saw a family friend who is a chiropractor and who couldn't see anything wrong with my joints either - nothing connected to the headache as far as he could see.
The kinesiologist adjusts my back/shoulders/neck when I see him - he always checks that everything is in place before starting to muscle test me. I had dislocated my shoulders a few years ago and had considered that to be a possibility but as time goes by it seems less likely..
Will you let me know how you are once you've seen the doctor again? I'd be interested to hear if the headaches, brain fog and dull pain around your eyes do go away completely. I am so glad to hear something is working for you - hopefully I will be able to say the same again soon! All the best.
Hello, I just found your blog tonight. My daughter has been complaining about headaches off and on for more than 10 years. They started when she was 4 years old. CT scans, sinus scans, MRIs, steroids, Topomax, Aleve, Immitrex... all have been useless in finding the cause of these monsters that interfere with her life every day. The mystery is, every time she eats ANYTHING, she gets a headache within 5-10 minutes. Now she doesn't eat in the daytime at all so she can concentrate on her school work. I've been frantic. Disillusioned. Pissed off. Worried. A rabid researcher. Glad to have company. Thank you for your blog. I hope we can all find the causes. I'll post if we find anything that helps her.
ReplyDeleteSure, I'll keep you posted. I'm scheduled for bi-weekly appointments until mid-December. Before last Tuesday, I used to feel dizzy and experience blurry vision after every meal because all the blood would rush to my digestive system. It's been almost a week, and I haven't felt a trace of discomfort since.
ReplyDeleteWhatever is ailing you, I hope the root of it is revealed soon. I feel emotionally connected to your well-being because I found this site out of desperation; my friends were sympathetic, but there's no way for them to understand what I was going through. Keep searching for clues; I honestly believe that the answer will not elude you forever. Meanwhile, all of us here will keep supporting you from afar.
Hello Kristi,
ReplyDeleteI am so sorry to hear about your daughter. I can't imagine what it must be like suffering from a headache at such an early age - people find it hard to believe it when I, an adult, tell them I have a constant headache; I can't imagine saying that as a child being any easier. Poor girl.
I am certainly no expert but given that the headache starts as soon as she eats something, it seems it must be connected to her digestive system. Have you tried any detox programmes/vitamins and the likes?
Hello- bless your heart for answering! We went to a chiropractor/meridian doctor today. He suggested several tests: for H. Pylori, delayed food sensitivity, hypoadrenia and a liver/gall bladder issue. We don't eat fast food- usually just fresh, homemade meals, so toxicity is questionable, but I'm willing to look at anything. He said I'd be hard-pressed to get an MD to order any of those tests, but I'll ask this Thursday when we see a pediatrician. Thank you for the thoughts, I think you are right- and suspect that it has something to do with hormones released on food intake.
ReplyDeleteDoes your headache get worse with food, or is it just at a constant 4/5 regardless of your activities?
Here's to health and wellbeing!!!
Hi Kristi, I actually had H Pylori (have a look at the links on the right - I wrote a post about it), although I have now got rid of it and the headache is still there.. so not sure if it's connected to that.. but certainly worth checking if your daughter has it.
ReplyDeleteMy headache is now at a 1/10 or 2/10 which is amazing - sometimes it gets a bit worse, 3/10 or 4/10 but now that only happens quite rarely (thank goodness). At first I did notice that when I ate the headache got a bit worse.. but sometimes it gets better when I eat so it's hard to say. The kinesiologist does think it's related to my stomach so it would make sense that its intensity changes when I have an empty or full stomach.
Have you looked at kinesiology? I don't mean to keep on going on about it but I really found it to help me - it's completely non-invasive and the kinesiologist can tell pretty quickly which part of the body is causing the problem by muscle testing. He then looks deeper into things and goes from there but at least you have a vague idea from the beginning...
Are you UK or US based? If the former happy to recommend someone.
This means a lot to me, someone that can relate. take a look at my blog sometime please.
ReplyDelete