Discussions By Condition: I cannot get a diagnosis.

Bizarre head sensation attacks

Posted In: I cannot get a diagnosis. 1 Replies
  • Posted By: Yagottalovejables
  • December 2, 2010
  • 11:22 AM

First of all, I do not expect to get a helpful answer at all, but I figured there's no harm in trying. This thing is a mystery. Please read!

I'll start off by describing the sensation: There is no pain and no real visual disturbances*. It's kind of like what I imagine a horrible (but not too intense) drug trip would be like. They occur instantly, like something in my brain throbs or pulsates (once) aggressively, then again, then again.. With less intensity each time, about 4-6 times (over the course of about 5 seconds altogether). I consider this the beginning. Things then calm down in my head, but then I start to feel an uncomfortable sensation of something building up. And what this sensation is building up to, is another throb. This process then repeats itself over and over for anything from 3 minutes to just over an hour (I'm not entirely sure how long the build up to throb process usually lasts, 1-3 minutes I'd say). The change that occurs throughout the course of each episode, is that towards the end, I sometime think it's gone. But then I get the sensation of the build up (It's very subtle to begin with, this sensation) again. I find that part very frustrating, because I usually think 'okay, it's gone!' But it's not. Eventually, during the build up sensation, it'll quickly dissolve/fade away and I'll be back to normal again. I usually concentrate on what sensation I can feel, just to make sure it's gone.

*If I were reading, a throb would normally make me lose my place.

I can get an attack when I'm watching TV, playing guitar, listening to music, studying, reading, playing sports, drunk (I'm more inclined to get distracted and forget I have one when I'm drunk), sleeping (They wake me up), whatever. I am sure there is no obvious trigger, if there is any trigger at all. They are completely random.

I used to obsess over how long one would last, because it's usually a fair indication of when the next one will occur.

I'm 20 years old now, and I've been getting these 'head attacks' since I was 12. Back then, I thought I was dying and they were the scariest thing in the world. Years of anxiety and psychological trauma followed (nothing too severe - I can go into detail here if needs be). I was at my worst during bouts of these attacks. I've been depressed, anxious and just plain freaked out by them, but I've learned to live with it. It took so long, but I'm in a safe state of mind now. It's still extremely unpleasant and a giant pain in the **s though.

They used to occur randomly over the course of 2 weeks (USUALLY 2 a day) over a 9 month period (these are approximations). The odd time, I'd get a random one. Although the attacks themselves have not changed, I've been getting them pretty much everyday since February 2009 now, every 2 or 3 hours.

I have been to doctors, neurologists, hopsitals, hypnotherapists. I have had EEG and ECG scans. There is no physical thing inside my head. I am not dying.

Diagnosis' that have been pondered were vertigo, migraine associated vertigo, ocular migraine etc. Nothing I have ever read describes what I feel. I call them 'migraines' due to my mother suffering from classic migraine when she was my age, but I have no idea what they are.

By the way! I have been prone to headaches my entire life. Perhaps that's unrelated, but just in case..

If you took the time to read this, thank you very much, if I gain any more insight to what is wrong with me, I will be on top of the world!


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  • HiI can identify with a lot of what you wrote. I was ill about ten years ago with a mystery kind of illness. After a year off sick I had to resign from a job I loved. To start with I had a vertigo attack and thereafter had a lot of dizziness, more vertigo, head aches, strange sensations in my head, tinnitus, etc. At first they thought it was Menieres disease, but it wasn't. Then they thought it could be a type of migraine. I saw several specialists, had MRI etc. but at the end of the day I never had a diagnosis. The best specialist said, What you have is outside of medical knowledge. He helped me deal with it - no caffeine, no late nights, no alcohol. Bright lights and busy supermarkets etc. were impossible for me at that time. I have gradually improved and now I rarely have a day when I have any 'bad' or scary sensations. At times I have thought this was psychological, but to be fair the medics never doubted my symptoms were real and that there was a real cause. Anyway, my GP said whether it was in my head or in my body, it was real to me and I needed help to find the cause and the relief. Acupuncture helped. I can now drink a little, can cope with most of life's situations - but caffeine makes me feel very odd and spaced out, and I easily get so I can't sleep as if I have an overdose of adrenalin! A quiet life is definitely best, but boring! Like you, I find distraction good, and like calm music on in the background. Good luck with it all. Yoiu may never know the answer, but just think of it as being beyond medical science and beyond medical help!
    Anonymous 42,789 Replies
    • December 2, 2010
    • 08:56 PM
    • 0
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