Connect
24/7 Headache for 13+ years, only getting worse as the years pass
Hello,
I'm hoping reaching out to a community like this may help me find a solution or at least some relief, as multiple doctors have yet to crack the case.
I'm a 38 y/o male and have been suffering from a 24/7 headache for over 13 years now. One day, I woke up with a headache and it just never went away. I wake up with a headache and go to bed with one, some days worse than others but it's always there. The only relief I have is sleep, if that's even possible nowadays. I've seen 3 neurologists, multiple general practitioners, an ENT, a cervical chiro and even tried acupuncture. I've run out of options unfortunately, aside from some experimental surgery (which is a no from me), so here I am.
At first, the headache was bad but manageable, now it's so bad I'm losing my short-term memory, finding myself not being able to finish thoughts or sentences at work and in social settings. It's holding me back from achieving what I believe I can be in life and what I want from it.... not to mention the crippling pain at times.
Anyway, long story short, I am seeking help from people who may have dealt with something like this or know someone who has suffered from this, since doctors have come up with nothing.
Thank you and bless you all.
Like
Helpful
HugInterested in more discussions like this? Go to the Headache & Migraine Support Group.
Connect
Hi there
I sympathize as I have also suffered from headaches 24/7 for about 15 years., and have tried EVERYTHING out there. You did not mention the neurologists trying Botox, CGRP’s, or sending you for an MRI of your head.. If this did not happen perhaps those avenues could be investigated. I have to admit they did not work for me - but they might for you! Do you grind your teeth at night? THAT could cause the headaches. A dentist could possibly help by making you a mouthguard. So, the way I cope is to allow myself one Tylenol3 two days per week - two days of relief - no more than that to not cause habituation or actually make the headaches worse. If your doctor agrees to prescribe this, do not cut the tablets into smaller doses in order to cover more days as my neurologist said that it is NOT the dose that counts but the number of days that you take the medication. I truly hope you find a solution, or at least some relief! Better luck to you.
My headache is almost 7 years. Has any doc considered CSF leak? I am having a mylogram/spinal tap and then a blood patch in my spine in August. Docs think a hole in my spine. This will be the 7th blood patch, but this is a new procedure. Where do you live and who are you seeing for treatment? You need to go to one of the major headache centers. I go to Philadelphia.
@richardfrancine thank you for the reply. I have tried Botox, that was my most recent neurologist’s last shot before offering the experimental surgery. I’ve had a few MRIs, CT scans that show up nothing. I do grind my teeth at night and have been wearing a mouth guard ever since realized this hoping that was the cause, but it’s not. I use to take Tylenol everyday until a doctor told me to stop taking it everyday unless it helps, which it never really did.
@mikaylar the doctors haven’t mentioned that, I will look into it!
@zsum06
Could you please tell me what experimental surgery you are referring to? Thank you. Dry much
@zsum06 hello, i have chronic migraines and botox does work for me, but I also have to take topirimate 150mg every morning and 200mg nightly and i take a cocktail when i do get a migraine which is about once a month now when it was daily. do you have a migraine cocktail by chance? have you tried medical marijuana? that does wonders for my migraines and other chronic pain, and if you do not want to smoke there are edibles and even if you dont want to do that the cream even works on the head
@mackvogt13 also sometimes food is a trigger. like my triggers are lights and sounds, sometimes peoples are food and smells. have you ever identified any of that? or possibly been tested for an aleergy or hormone issue?
@mackvogt13 I’ve tried a ton of different cocktails, nothing yet. I wish I could try medical marijuana, but my state won’t allow me to have a card and own guns, and I enjoy hunting.
@mackvogt13 I’ve asked about allergy tests but they said unless I’ve had a known reaction, insurance won’t cover the test. And hormone levels are in the normal range supposedly.
I’m so sympathetic, as I sit here holding an ice pack to my head. I have occipital neuralgia on the left side. I take Celebrex and Tylenol, and get some relief from my NALU nerve stimulator. Headaches are the pits! Best wishes for relief.
-
Like -
Helpful -
Hug
1 Reaction