Community, Coping, Reader Stories

Headache Forums

If you’re looking for a way to remember that you’re not alone and that it’s possible to find a way to deal with your pain, online forums are a great place to go. Even if you don’t you want to post, you can learn a lot from reading. Topics range from personal stories to drug side effects to treatment options. Some posts are rants about being miserable and others celebrate victories like positive test results or a new medication that gives relief.

There are four active forums that I know of and, even if the title includes “migraine,” they all address various types of headaches. Some focus on exchanging clinical information while others are more about creating relationships. Don’t be embarrassed to read without posting, to only write occasionally or to vent. All the forums are different, but they’re all made up of caring people who understand your frustrations.

14 thoughts on “Headache Forums”

  1. Hi,

    Problems getting a definitive diagnoses re headaches.

    Assumed to be cluster. Many docs don’t know anything. Others form an opinion based on my own assumptions.

    After 10 years of headaches varying in levels of severity & frequency prescribed Venaflaxine for supposed depression.

    It stopped the headaches for another 10 years. Then required increasing doses to maintain effectiveness.

    No side effects while using 75 mg/day.

    But, doc says risks if increase dosage.

    Now stopped this medication and back to putting up with cluster (?) headaches.

    The Venaflaxine is a SSRI.

    I have wondered for years if an imbalance in my serotonin levels causes the headaches. And if there is a better fix than continuing with an SSRI such as Venaflaxine?

    PS hope this Organization is still current.

    1. many years ago i was experiencing severe headaches from time to time. at my home. when this would happen i would do what people would normally do and what doctors would tell people to do. take some type of pain medication and rest until it gets better. after about 1-3 days the severe headache would stop and i would get on with my life.
      till one day while i was at home and a severe headache started. this time i had something that i had to do that required me to leave my home. about 45 minutes after leaving my home the severe headache stopped.
      the next time it happened i left my home to check if it wold go away and it did.
      to sum this up… i found out it was some type of electronic device causing the severe headaches.
      all those prior times it happened if i just left my home it wold have gone away and i wouldnt have wasted my time assuming i was really sick, taking pain medication and resting till it went away.

  2. Dear The Daily Headache,

    An interdisciplinary team lead by Drs. Patrick McGrath and Anna Huguet, working at the Centre for Research in Family Health ( at the IWK Health Centre ( in Halifax, Nova Scotia, Canada is currently developing a distance psychosocial intervention for adolescents and young adults with recurrent headaches. This intervention, called the Wireless Headache Intervention (WHI), will uniquely be delivered entirely over the iPhone and the computer.

    They are now testing one of the components of this intervention as the iPhone headache diary (the WHI diary). This diary is intended to help headache sufferers become more aware of their headache patterns and monitor their progress over the treatment. They are now testing the diary and recruiting participants anywhere in the world to take part in the online study. Individuals between the ages of 14-28 with recurrent headache problems and who have an iPhone are encouraged to participate. You can see more information about the study

    I am writing to ask if you can please help disseminate information about the study to your members, colleagues and any individuals you feel may be eligible to participate. We would like to provide them with some information about the research as well as the link to the website so that they can be informed about the research before deciding to participate or disseminate this information.

    Feel free to also post about the study on Facebook, newsletters,
    mailing lists, and your website (if applicable). If you would like a copy of our paper posters or brochures please, with your preferred mailing address and a proposed number of materials that you would like sent. Do not hesitate to contact us if you need any further clarification.

    Please click here to view the interview CBC did on our Wireless
    Headache Intervention project:

    Thank you very much and have a nice day.

    Kind regards,


  3. Hello everyone,

    Do you track your headache? What do you use?

    We are researchers at the IWK Health Centre in Halifax, Nova Scotia. We’re interested in hearing whether you track your headaches, their features and related symptoms, and would like to know what you use to do this. We’re wondering, because we have developed a headache diary for iPhones. We’re testing this diary now in a 2-week study. If you would like to learn more about your headaches, or test out our application, or learn more about what we do you can view our website for more information and to sign up for the research: You can participant and access out iPhone headache diary app from anywhere in the world. The study is entirely electronic for your convenience. Participants will be reimbursed for the 2-week participation with a $20.00 gift card. Please contact us if you would like more information! Looking forward to hearing about your experiences using headache diaries.

    Thanks and have a nice day.

  4. Hi everyone – I hope I can help. I just recently went to a neurologist in NYC who came HIGHLY recommended and who people call the “headache guru.” He is known for coming up with rare diagnoses when other doctors have run out of ideas. I had been told by numerous doctors that I was suffering from migraines yet I had no real migraine symptoms besides an unrelenting headache that was driving me insane. I wasn’t responding to ANY migraine medications and nothing would bring any relief or break my headache. This doctor disgnosed me with a condition called “hemocrania continua” which is a very rare chronic headache condition that he says is very rarely diagnosed as most doctors very rarely think of it. It can have all the same symptoms of migraines (plus a few others that are specific to the condition) but does not respond to ANY migraine medications. It responds to one medication only called indomethacin and once he prescribed it it brought relief immediately. It’s an anti-inflamatory and its literally brought such relief. After years of headaches and every medication under the sun I’m finally pain free. Talk to your doctors, this could be what it is!

  5. GALINA –THAnks for the info. I get severe headaches -in back of neck & mainly back of head.
    i’ve taken numerous painkillers –it helps but only for awhile
    I am interested in

  6. Hello! My name is Galina. I am 28-year-old female PhD student at UCI. I’ve been battling daily headaches for 16 months now, and finally found something that works. I’ve been to at least 10 doctors (including 3 neurologists, a chiropractor, an acupuncturist, 2 dentists, etc.). The diagnosis, at the end of the day was, “daily chronic headache”… NO SHIT! Neurologists offered to put me on “preventative medications.” If you’ve had headaches and been to a neurologist, you know what I’m talking about. They say that they’ll give you an antihistamine, antidepressant, etc. and that this is something you’re going to take once a day for a very long time until you feel better. I didn’t want to give in, but after 6 months of daily headaches, I finally gave up, and started taking stuff. I tried 7 different things until I found one that helped me. I was onElavil for 2 months, the first 2 weeks were awful. You’re not supposed to take any painkillers (because they are cause rebound headaches). Then, I had a month of awesome relief!!! YES!!! I thought it was gone forever. But, my headaches came back only 2 months after I started taking this pill. On top of that, I was very uncomfortable taking these antidepressants. My husband and I are starting to think about having kids, and none of these pills are safe for pregnancy. Anyway, after a LONG LONG search, I found this video: It talks about anti-aging stuff, but I was ready to try anything, and this is a safe supplement that was developed by a scientist at CU Denver, and seemed totally reasonable to me. I’ve been taking the supplement for 2 months now, and I’m off everything else. I feel great, I’m full of energy, and FINALLY headache free. I would recommend this to everyone who has headaches. At the very least try it, it’s only $40/month, which is probably less than what you spend on pills now, and it’s totally safe. If it helps – great, if not – you don’t lose anything. Let me know if you are interested. My email address is:

  7. Weird Headaches – What could this be?

    I’m living in Cambodia and do not have access to adequate health care, so I’m looking for advice on a weird condition I have contracted. I have continual headaches for ten days now. I’m male, 25 years old, in good health and have never had headaches before.
    The headache is on the top of the head, as though something was twisted – not one-sided, no aura, not photosensitive – but sensitive to movement, therefore worse when walking. On the first day, I was vomiting a small quantity which might have been from eating unclean food at a food stall; since then no nausea. It’s coming for half an hour and going for half an hour and is most serious at night; sleep is normal, though. I do not usually take medicines; response to 500 mg paracetamol plus a combination pill with 400 mg paracetamol, 65mg caffeine, 20 mg codeine phosphate improved the condition for half an hour only, i.e. it didn’t work.
    I’m grateful for any suggestions. I have very little funds and have to pay for any test myself, so I can’t just get a general check up, couple of scans etc., apart from the fact that fMRI cannot be done where I live.
    Thanks everybody, Heang

  8. I’ve been usuing detox foot pads from and I hardly get headaches at all anymore. I’ve been a diet coke junkie my whole life and after I cut back and started using these foot pads, I felt so much better that I realized I didn’t know how bad I really felt all those years.

  9. I have been suffering from debilitating headaches for a number of months. they may be a few a week to a few a month. mainly onesided, constant pain around my right eye, Some attacks are less painful while others are devastating with vomiting and neck pain. I have had a ct scan showing nothing abnormal I have tried number over the counter and prescip. to no avail. Im at my wits end. Anyone else with similiar attacks and what did you do.

Leave a Reply

Your email address will not be published. Required fields are marked *