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5 years of a constant headache

I have had a constant 24/7 headache for over 5 years. The first year the pain was horrible and then my Neurologist started me on botox and along with topomax and varapamil the pain level has been reduced to a level I can live with most days. The doctor thinks I have a rare form of migraine. I have been to a headache specialist with no luck and had an MRI, spinal tap, etc. My question is ....Has anyone else had anything like this? I have forgotten what it feels like to not have my head hurt.

  1. Hi Lenna,

    Thank you for your post. I am so sorry to hear about the pain you have experienced, however it does sound like you have found a treatment which has provided you with some relief, which is great to hear. While I do hope community members will provide you with some of their insight and personal experiences, I thought I would send along a few articles. The first one discusses various types of chronic migraine - The following provide self care tips for managing symptoms while in the midst of an attack -, Also, perhaps you will find these articles informative as well -,, They provide ways to cope with the emotional impact of chronic migraine. Again, thank you for your post and reaching out to us. Please continue to reach out when needed and keep us posted on your progress. We love hearing from you.


    Meaghan ( Team)

    1. Hi Lenna,
      I just read your post and yes I know what you are going through. I have also had a constant migraine for 5 1/2 years. I have tried many things which I am sure you have as well, been to many drs, medications, diets, etc etc.

      I know it has been a few years since your post. Do you still have your migraine or have you found any relief? Also I used to get “regular” migraines that went away, sometimes stubborn ones that lasted a week or two. Then one morning I woke up with this migraine and it has never gone away!

      Thanks for sharing your story and I hope you got relief!

      1. This sounds like what I have had for 70 days (never got headaches before). I’m taking same medicine for four days now without relief. Mine gets better and worse but always radiates from below and behind ears. Have you any advice? I cannot function half the time.

        1. I agree with Holly -- the "nitty gritty" of ketamine infusion you've brought up here is not something we've discussed in much detail on the site yet. We really appreciate you sharing, as I'm sure many others do who are reading along.

          Hey -- my interest is so piqued about nasal oxytocin! I knew of it and its functions, but never considered it could be given medicinally. Makes sense, considering other hormones are used in various forms all the time. Would love for you to break open this topic in more detail once you get started. Fingers crossed and sending peace to you! -Melissa, team

        2. Yes- I'll share how the oxytocin approach goes, for sure. Thanks and have a great weekend. Warmly- Holly team.

      2. Thanks for your reply. I am just coming to grips with this. I never had much in the way of headaches until July 29 of this year (I got what turned out to be a bacterial infection in Mexico which started with a sore throat three days earlier). My head has not stopped hurting since. I've also had hot flashes, imbalance, throbbing, eye pain, you name it. It took my until a week ago to get CT and MRI and to stop thinking the doctors would find something. Someone on this site told me yesterday I may be suffering rebound from 10-15 aspirin and ibuprofin a day so I cut back yesterday and I hope that helps but I'm not too optimistic. I'm still a little in denial. When I wake (and I don't sleep more than a couple of hours) I feel like there is a clamp behind by ears. It is usually just there on waking but it spreads all over. I get that this is inflammation and the only thing I can do it counter it with diet, cold, meditation, relaxation, etc. (ice pack on neck helps when it is there)

        I haven't tried Ketamine or anything.

        I wish I had more faith in the doctor who prescribed Topamax four days ago. He didn't examine me or ask me, tell me anything about Migraines, my lifestyle, etc. I told him I'm going on an open water swimming for a week in Croatia and then trekking starting in a few days and that I planned to take Scopamine (I was worried about inner ear issues) and he said no problem - ironically, the Topamax literature says there may be problems with overheating and swimming because of seizures but I don't have time to see another doctor. Its the first time a doctor used the work migraine with me but he didn't say anything about Migraines other than "I'm giving you Topamax" and "Topamax has these side effects." Nothing about effectiveness, lifestyle, prognosis, etc.

        I had to vent.

        Thanks for writing me

        1. Oh my word, I am so sorry! I dont think the drs need to throw medicine at you and hope for the best, it seems like you need testing and bloodwork done to see whats going on. If you cant get help from your regular dr or a neurologist maybe try a functional medicine dr?
          Did they give you medicine for the infection? Antibiotics…prednisone??
          I hope you get some relief!

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