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i need some answers, cluster headaches

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l13891
l13891

hello everyone.

i just registered because i am trying to do some research. i am sorry if this is the completely wrong place to post this and if this is not allowed, but i feel i need some answers.

four weeks ago i got an emergency appointment with my doctor because i had had a red eye for a week and i was very sensitive to light and looking at anything bright would send a shooting pain through my eye/head. moving my eye hurt, and i occasionally would get headaches on the right side of my head.

the doctor was a question mark after he tested everything neurological and he sent me straight up to the emergency room where they admitted me, took more neurological tests, blood tests, urine/stool samples and eventually a CAT scan. that same night i needed to have a spinal tap and all these tests were completely fine.

i stayed overnight and i got put on oxygen in the morning when i had an "attack", which did not help. then the pain just went away, and they diagnosed me with cluster headaches.

i luckily had my friend with me and she commented on the fact that my eye had been constantly red throughout the week, when as i understand it, the redness should go away between attacks if it is in fact cluster headaches. i then got checked by an eye doctor and he looked at it and said that i had iridocyclitis.

they then said there were some inconsistencies with my diagnoses, and said that there was a good chance i had both cluster headaches and iridocyclitis. i got sent home with eye drops and an eye cream that i was put on for three weeks. the pain disappeared the same night i started those, except for small pains in and around my eye occasionally. 

long story short - i got diagnosed with cluster headaches and then iridocyclitis and then the possibility of having both. pain went away. 

last night i had the same exact pain again, and my eye turned slightly red, just as before. i talked to my doctor who sent me to the eye doctor, who confirmed that there was no sign of the iridocyclitis anymore, and that i then most likely have cluster headaches.

my questions are, as i understand it the pain is unbearable during an attack if it is in fact cluster headaches? i have looked around and tried finding stuff on the internet and it seems a million times worse than what i have. my eye/sometimes head just hurts when i look at light, and i occasionally get headaches but those are all over, and not localized to one side of the head. i also, like i said, was put on oxygen in the hospital but that had little to no effect on me.  granted, cluster headaches can be "mild", but i would say the spinal tap i had was more painful than my "attacks". i should also say that i have no visual problems during these "attacks".

i am just at a loss and do not know whether i have it or not. if anyone could shed just a little bit of light and share some experiences i would be so so so grateful!

0 likes, 7 replies

7 Replies

  • wendy80842
    wendy80842 l13891

    Posted

    While I can't offer any information about cluster headaches, I do know what it's like to be in 'limbo'. Not knowing what's happening, health-wise, is really hard. Keep good written records of any and all symptoms, effects, questions or concerns. It can be useful when dealing with medics. If possible, have someone with you, when seeing Dr's, too, as it can be useful, afterwards, to chat to them about it. No, you needn't worry about being in the wrong place, you're looking for answers, this seems like the right kind of place, to me.

    Good luck.

  • sunct7
    sunct7 l13891

    Posted

    Hi, your story sounds very familiar to me. I started to have sharp stabbing pains 3 years ago after dental treatment but eventually I was diagnosed with SUNCT which is something like cluster headache (CH) but also maybe trigeminal neuralgia (TN). I also have these pains, a red watery eye all the time and I am sensitive to light on that side. Light can trigger the pain (as can cold wind, chewing etc. but sometimes it just happens out of the blue). Have you ever suffered from migraine? There is an overlap between CH, SUNCT, TN and Migraine and headches can change over time. If the pain comes back, push for a referral to a neurologist who can diagnose you better. Try the ouchuk website, my thoughts are with you!
    • l13891
      l13891 sunct7

      Posted

      thank you so much for your reply, i'm glad i'm not the only one that has this. do you have pain all the time? how long do your "attacks" last? is it painful or tolerable? 

      i've suspected that i have migraines for years now but it has never been pain like this. my doctor shrugged it off and told me they're probably just tension headaches. 

      i'm on day two of this "attack" now, and my eye is still red. i'm gonna call my doctor tomorrow and see if she wants to refer me to a neurologist. 

    • sunct7
      sunct7 l13891

      Posted

      How strange. I have had migraines on and off all my life but I thought it was sinusitus until I had a camera put up my nose (not very pleasant!). I've been told that what I have can happen to people with 'migrainous biology'. I have between 5-30 stabs of pain every day, usually lasting just a few seconds but it can be very intense. I take Lyrica which helps a lot but it has unpleasant side effects. Like you, my eye is red and waters all the time but I think there are variations in these types of headache. Do try to find a really good headache specialist.
  • l13891
    l13891

    Posted

    i talked to my doctor today over the phone as my eye has been painful constantly since sunday. i told her that last i did try using the same eye cream that i had been prescribed for the iridocyclitis and the redness and pain went away by morning but she explained that was probably thanks to the cortisone in it and that that might be what's causing my current pain. she told me to stop reading about cluster headaches because while i don't have the typical symptoms, or only have "mild" symptoms, i might still have it. i was told buy some sort of salt water solution (since my eye might be infected because of the eye cream) and to try that this weekend and if it didn't help then i basically just had to go to the emergency room on sunday. 

    i'm so confused, i don't know whether i have a regular old eye infection or cluster headaches or none of them, and i don't know why something that's supposed to help would make it worse, and i don't know why a kind of eye infection would have the same symptoms as what i've had before i even got it. this is so frustrating.

    sorry to ramble on, if you bothered reading all of this, thank you.

    • sunct7
      sunct7 l13891

      Posted

      Hi again. Please ramble on, I know what it's like to chase a diagnosis! I was diagnosed by a really good oral surgeon and referred to a top neurologist. Given your history of probable migraine and photophobia with the pain, it sounds as though it is more than an old eye infection.  You know when something isn't right and bottom line, if you are still in pain, you shouldn't be! Be strong!.
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