Non-stop 24/7 "migraine" headache for 4 years. New development

Posted , 18 users are following.

Hello my name is Dylan. I'm 18, and have been suffering from a constant "migraine like cluster-headache" for the last 4 years. It all started when I got sick with the H1N1. I was assumed to have the H1N1 based on my symptoms, although a test was never done, and I was prescribed tamiflu. I went through months of constant fevers and colds as well as bronchitis. Throughout it all I had bad headaches, but nothing I'd remark as abnormal given my health at the time, they were just "bad headaches".

3 months into the H1N1 flu I went to watch the movie Avatar in 3D with my family. At this time I still had a bad daily headache but it was manageable with ibuprofein/tylenol. When I got home from the movie my head was absolutely killing me and so I went to my room, applied ice, took tylenol nothing helped. The pain kept climbing and I ended up screaming in pain into my pillow and was in agony. I'm not one to show pain, but it was like nothing I had ever experienced. I'm not sure if it was right after that, or in the coming month, but at some point the headache was always there and always at a high pain level. It NEVER went away, and never has once gone away in the past 4 years. The pain back then was all around my head, everywhere, I couldnt pinpoint where it was when asked because it simply hurt everywhere.

Fast forward to 3-5 months ago, I started noticing that the pain had centralized around my temples. The level of pain has not gone down, and I'm not even to sure when this change occured, but I was now sure that most of the pain was emenating from my temples.

Fast Forward to a few weeks ago. I have now noticed that the pain, while being in my temples, also seems to reside along my upper cheek bones. And having these bones massaged seems to aleviate the pain for a short while. I have also noticed I clench my teeth a lot. I have started wearing a sleepright dental guard at night, and have found that I wake up in less pain, though this could be placebo. I say this because my pain usually starts off low in the morning and rises as the day progresses.

So what I'm asking your advice on: Is this new develpmont of the pain residing in my upper cheek bones/temples possibly mean there is a solution to curing my migraines?

Now, I have never once thought this migraine would be curable, simply because it never felt that way. I have had a CT-scan, MRI, and X-rays a few years back, however they never found anything out of the ordinary. However now that much of my pain has moved into my upper cheek bones I wonder if there is a possibilty of it being something else thats causing these migraines.

My neuroligist check me for signs of TMJ a few months back when I mentioned about my temples, but found no signs of it. I also don't have clicking of my jaw or lock jaw, or much discomfot in my jaw to begin with. I still have my wisdom teeth in, and my parents are scheduling to have them removed, however I don't believe this is the cause either through internet research (gums not inflamed/hurting, no signs of wisdom teeth emerging, and the type of pain.) I looked into Trigeminal Neurolagia, but the type of pain and attacks didnt match.

Symptoms of this "migraine like cluster headache":

- I get a migraine aura when the pain spikes. Light sensitivity increases, sounds become distant and my motor function becomes impaired. I also seem to have "blue field entoptic phenomenon", as I see stars in the sky all the time, this started a year or so ago, but is probably unrelated.

- Pain starts off low in the morning (generally), and rises as the day progresses.

- Pain increases a lot from Motion Sickness and loud noise. If left untreated will turn into a full blown migraine attack.

- Alchohal/caffeine/cannabis have been used for pain relief. I used to rely solely on cannabis, however, it started creating rebound headaches so I have moved to rely on caffeine and alchohal.

- Impaired memory. While the use of cannabis may also have affected my memory, I feel a lot of the loss is on account of the daily pain I put up with.

Anyway, this is just the tip of the iceberg, there are many things not covered (hard to believe with that writeup, I know lol). This post is a novel as it is, so I think I'll cut it off there razz. The line in bold is the question, does anybody have any ideas as to what this new develpmont could mean? Thank you for your time, I apoligize for the length of the writeup, and understand it could be hard on some people's heads.

Attached is a little diagram I annotated with the new pain areas I'm referring to. Blue= specific point, red= ecompassing pain.

2 likes, 20 replies

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  • Posted

    Hello. I have had very simllar symptoms for past 8 months and like yourself had scans and so on and nothing could be found. To make things worse none of the medication given to me works on the pain. Just recently I saw another neurologist and he did several blood tests one of which was for diabetes which it turned out I had. This can be the cause of severe pain and perhaps it would help to ask your neurologist or doctor for the test. Thanks.
  • Posted

    Hi. I believe that you may be suffering from Migrianous Vertigo. I have suffered from regular migraine symptons all my life ( since a child aged 7). I have always taken pain killers or migraine and just tried to cope with the symptoms. However 4 years ago....(im 51 now) my syptoms became much worse and the light & sound intolerance, dizzyness and rotational sicknesd (vertigo) pain in my eyes nose prevented me from going to work. At one point I was so dizzy and disorientated I just fell to the ground. After lots of Gp / psychiatrist appointments I was diagnosed with Migrainous Vertigo.

    My symptoms are-tinitus (ring in the ears) dizziness sleeplessness pain in my eyes nose,brain fog, unable to concentrate intolerance to light and sound(I wear tinted prescription glasses all the time to help, depression, nausea, my brain is always over stimulted (my head has a feeling of fuzziness) severe head pain (migriane attack about every two to three weeks, pain in my jaw...i do clench my teeth at night now, somtimes I cannot drive due the the felling off falling. I experience these symptoms most days.

    My treatment is Pizotifem 1.5mg. I take it ntil the symptoms calm then stop for a while. I would take it continously however there is severe weight gain as a side effect. My weight has increase by 1 stone in a short petiod of time...so i try to lose the weight and then return to the tablets. Some people report having increased their weight by 2 stone in a matter of weeks without over eating. I personally ddon't wish to become the size of house lol....therefore limit my use of the tablets.

    Hope this helps.....hopefully your symptoms may have already reduced or you are on the appropriate treatment. Regards Wendy

  • Posted

    Hi I'm bhargav suffering from severe pulsating headache on both sides of the temporal part which occurred continuously since 4 years ago till now it has no end I had undergone several test like blood test ,CT scan, MRI scan, master health check-up, EEG, ECG all are normal it started with pulsing as my day started increasing as the day occurs high at mid afternoon, I didn't notice any migraine symptoms like nausea , vomiting, unilateral headache and now taking treatment for miagrane but I had headache on both sides it effects quality of my life so please suggest what might my problem was and how can I overcome this

    • Posted

      Has your symptoms got any better? I'm suffering from something very similar and have been since last July. Just don't seem to be getting anywhere with the specialists.

  • Posted

    Hi, I know this post was a long time ago but did you ever get any answers to what was causing your headaches?  My Daughter aged 7 has had a constant headache for 8 months (all physical testing done and nothing found), so I am searching to try and find answers.  Thanks. 

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