3 ms·

I've had a chronic headaches for over 20 years. Actually just one big long two-decade headache, it's never gone away and nothing, including painkillers, really

I've had a chronic headaches for over 20 years. Actually just one big long two-decade headache, it's never gone away and nothing, including painkillers, really helps. Three things that I do to deal with this: - ignore: most of the time it's not top of mind; I can feel it always but don't think about it always. - keep up some hope: every few years, I go through the usual rounds with my GP and other specialists to see if there's anything new that can be tried to mitigate it. This is something of a double-edged sword though, as it is eventually paired with another crushing disappointment. - remember there is a natural end to this: one day I'll be dead and it won't matter any more, it's temporary in the same way that everything is temporary. And if I get fed up with it all and want to leave early, it's doable as a last resort. A literal last resort, really. I've also developed chronic lower back pain and tinnitus in the past 5 years and deal with those in the same way.

s5300 6y ago
Hi - I'd like to go into a bit more detail than just mentioning this out of the blue - unfortunately in a bad spot to do that right now. On the rare chance you for some reason haven't heard of it already - look into Cerebrospinal Fluid Leaks https://rarediseases.org/rare-diseases/spontaneous-intracranial-hypotension/ https://rarediseases.org/rare-diseases/spontaneous-intracran... https://youtu.be/QyvWxobqKrc https://youtu.be/QyvWxobqKrc https://www.mdedge.com/neurology/migraineresourcecenter/article/132780/headache-migraine/when-suspect-csf-leak https://www.mdedge.com/neurology/migraineresourcecenter/arti...
blamestross 6y ago
It probably won't help you diagnose yourself but my 8 year long migraine was PSVT and having a very unstable blood pressure as a result. Neurologist asked how often I had a migraine and I said "once" and then he asked how long "4 years so far". The cardiologist was much more help when we figured it out eventually. Heart surgery fixed it. Chronic pain on that timeline does a lot of harm to your physical and mental health. I'm still re-learning how to relate and respond appropriately respond to pain as a stimulus. I'm dangerously used to ignoring it. Empathizing with other people's pain took years to re-learn despite recognizing my failure fairly one in the process. Feel free to email me ect if you want somebody to talk to. brendan.benshoof@gmail.com
throw982739182 6y ago
If you haven't tried it already, given that you also have lower back pain, try a posturologist, if you can find one... It's hard to find much info/practitioners. I'm also not sure how legit some are. Usually I would avoid non-conventional treatments (though I have been taken by family to everything from osteopaths to chinese medicine practitioners), but previously similar fields (e.g. chiropractors) had sort of helped, so I went. It has literally changed my life. I had chronic headaches since I learned how to speak (they were not so often then). Me and my family had tried everything. I had progressed to the point where it was 24/7 pain, highly depressed, could not work/go to university. Within the month my pain was down 25%, within a year I was 50% better overall, no more 24/7 pain, started studying. Now I'm about to graduate. I still go once a month but am 90% better. I'm also not downing pills like crazy. I was on 3-4 a week (this was just to numb the bad episodes), now down to 2-3 a month (mostly due to me overexerting myself). It does not work for everyone (it helped some family members with back pain but not others or not immediately so they stopped going), but can't hurt to try. It is very similar to going to a chiropractor but "softer" is how I would describe it. There is not as much cracking and popping. Half is stretches. There's lots of checking specific points for pain, also the whole body is looked at. And unlike chiropractors or massage therapists there is a noticeable change in mobility and posture and other things (for me decreased light sensitivity) after a visit.
- throw982739182 6y ago
  I meant homeopaths, not osteopaths. Osteopaths might actually be quite similar to what I'm talking about but am not 100% sure.
mosseater 6y ago
I had a chronic headache that lasted 17 years, so I feel your pain. I know you probably tried everything, but it might be worth trying the random thing that ended up getting rid of my headaches completely. 30mg of melatonin every night. Yes, this is 10x the recommended dosage of 2-3mg. But it turns out there's some random chemical imbalance in my brain causing these headaches. It's not that documented but there are studies. This worked for me almost immediately after the 2nd night. The euphoria of not being in pain lasted months. From one person who lived in constant pain to another, don't give up!!
thorin 6y ago
Given it's been 20 years I'm sure it's not anything obvious, but the main reason I get headaches is dehydration or blocked sinuses. Other likely reasons would be caffiene/sugar spikes. What is your general state of health and diet like, and stress levels?

s5300 6y ago

Hi - I'd like to go into a bit more detail than just mentioning this out of the blue - unfortunately in a bad spot to do that right now. On the rare chance you for some reason haven't heard of it already - look into Cerebrospinal Fluid Leaks https://rarediseases.org/rare-diseases/spontaneous-intracranial-hypotension/ https://rarediseases.org/rare-diseases/spontaneous-intracran... https://youtu.be/QyvWxobqKrc https://youtu.be/QyvWxobqKrc https://www.mdedge.com/neurology/migraineresourcecenter/article/132780/headache-migraine/when-suspect-csf-leak https://www.mdedge.com/neurology/migraineresourcecenter/arti...

blamestross 6y ago

It probably won't help you diagnose yourself but my 8 year long migraine was PSVT and having a very unstable blood pressure as a result. Neurologist asked how often I had a migraine and I said "once" and then he asked how long "4 years so far". The cardiologist was much more help when we figured it out eventually. Heart surgery fixed it. Chronic pain on that timeline does a lot of harm to your physical and mental health. I'm still re-learning how to relate and respond appropriately respond to pain as a stimulus. I'm dangerously used to ignoring it. Empathizing with other people's pain took years to re-learn despite recognizing my failure fairly one in the process. Feel free to email me ect if you want somebody to talk to. brendan.benshoof@gmail.com

throw982739182 6y ago

If you haven't tried it already, given that you also have lower back pain, try a posturologist, if you can find one... It's hard to find much info/practitioners. I'm also not sure how legit some are. Usually I would avoid non-conventional treatments (though I have been taken by family to everything from osteopaths to chinese medicine practitioners), but previously similar fields (e.g. chiropractors) had sort of helped, so I went. It has literally changed my life. I had chronic headaches since I learned how to speak (they were not so often then). Me and my family had tried everything. I had progressed to the point where it was 24/7 pain, highly depressed, could not work/go to university. Within the month my pain was down 25%, within a year I was 50% better overall, no more 24/7 pain, started studying. Now I'm about to graduate. I still go once a month but am 90% better. I'm also not downing pills like crazy. I was on 3-4 a week (this was just to numb the bad episodes), now down to 2-3 a month (mostly due to me overexerting myself). It does not work for everyone (it helped some family members with back pain but not others or not immediately so they stopped going), but can't hurt to try. It is very similar to going to a chiropractor but "softer" is how I would describe it. There is not as much cracking and popping. Half is stretches. There's lots of checking specific points for pain, also the whole body is looked at. And unlike chiropractors or massage therapists there is a noticeable change in mobility and posture and other things (for me decreased light sensitivity) after a visit.

throw982739182 6y ago
I meant homeopaths, not osteopaths. Osteopaths might actually be quite similar to what I'm talking about but am not 100% sure.

mosseater 6y ago

I had a chronic headache that lasted 17 years, so I feel your pain. I know you probably tried everything, but it might be worth trying the random thing that ended up getting rid of my headaches completely. 30mg of melatonin every night. Yes, this is 10x the recommended dosage of 2-3mg. But it turns out there's some random chemical imbalance in my brain causing these headaches. It's not that documented but there are studies. This worked for me almost immediately after the 2nd night. The euphoria of not being in pain lasted months. From one person who lived in constant pain to another, don't give up!!

thorin 6y ago

Given it's been 20 years I'm sure it's not anything obvious, but the main reason I get headaches is dehydration or blocked sinuses. Other likely reasons would be caffiene/sugar spikes. What is your general state of health and diet like, and stress levels?