hello! newbie with some questions

[linnbakk]

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 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!

[jms]

I am certainly not an expert on the subject but I'll give you my observations. My son has had CH for about 14 years. The pain is on one side only, not the entire head. The pain can shift sides but it is usually localized. His eyelid droops and the eye waters but I wouldn't describe it as "red". I don't recall the term "mild" ever being used to describe CH although the severity of the pain can vary, but this is serious, debilitating pain. Oxygen is one of the few things that actually does help alleviate the pain. I hope you can find the answers you seek. It can be frustrating dealing with these conditions because the symptoms often change and what works for some people doesn't work for others.

[Bejeeber]

Hi linnbakk,

 

I can see why you have questioned the CH diagnosis, as there is hardly anything CH-like about your symptoms as far as I can tell. Agreed with jms that the eye is known to droop and water during an attack, but turning red is not a symptom I recall hearing of.

 

A whole lot of us have come to realize (the hard way) that the one and only type of doc whose diagnosis can be trusted is a genuine headache specialist neurologist - I hope you can get to one of those (not a garden variety neurologist, as they're all too often ill informed).

[CHfather]

Just adding my agreement to what jms and Jeebs have said -- from the symptoms you describe, it does not sound like you have CH.  That oxygen didn't help is also a clue, but since oxygen is often administered ineffectively for treating CH and you don't say how it was administered to you, we can't rely on that.

 

Red eye is very commonly reported as a symptom of CH, although like Jeebs, I haven't heard about or seen much of it in actuality.  This is from Harvard Medical School, for example: >>The eye on the painful side is red and watery<< (http://www.health.harvard.edu/pain/headache-when-to-worry-what-to-do); and this is from our own ClusterBusters website: >> On the same side as the pain, the eye may become red . . ." (https://clusterbusters.org/about-cluster-headache/).%C2'> There are plenty of others that can be found from googling "red eye" and "headache."

 

But red eye does not equal CH, and nothing else you describe sounds really CH-like to me.

[CHfather]

Just adding my agreement to what jms and Jeebs have said -- from the symptoms you describe, it does not sound like you have CH.  That oxygen didn't help is also a clue, but since oxygen is often administered ineffectively for treating CH and you don't say how it was administered to you, we can't rely on that.

 

Red eye is very commonly reported as a symptom of CH, although like Jeebs, I haven't heard about or seen much of it in actuality.  This is from Harvard Medical School, for example: >>The eye on the painful side is red and watery<< (http://www.health.harvard.edu/pain/headache-when-to-worry-what-to-do); and this is from our own ClusterBusters website: >> On the same side as the pain, the eye may become red . . ." (https://clusterbusters.org/about-cluster-headache/).%C2'> There are plenty of others that can be found from googling "red eye" and "headache."

 

But red eye does not equal CH, and nothing else you describe sounds really CH-like to me.

[Laura401]

My initial instinct was SUNCT but, after re-reading, I am unsure if the headache is actually localized behind the eye. Was your CT with angio?

[linnbakk]

thank you all so much for your answers, i am glad i am not the only one who doubts this diagnosis.

 

my eye does water when it hurts, but only occasionally. the oxygen i was given was through a face mask, and the CT that was taken was without an angiogram.

[Bejeeber]

And thank you CHf for the diplomatic adjustment to my statement of not recalling seeing red eye described as a symptom. More evidence that just because I don't recall seeing something, doesn't mean I haven't seen it, numerous times. DOH. 

[linnbakk]

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.

[CHfather]

gosh, this is horrible.  i have no idea what to say about your eye or your pain, or why someone at the ER would be expected to figure out what's going on.  CH pain certainly isn't going to be continuous, and relatively mild, for five days.  has this doctor prescribed anything for your (supposed) CH? 

[linnbakk]

gosh, this is horrible.  i have no idea what to say about your eye or your pain, or why someone at the ER would be expected to figure out what's going on.  CH pain certainly isn't going to be continuous, and relatively mild, for five days.  has this doctor prescribed anything for your (supposed) CH? 

 

i know! i got prescribed 600mgs of ibuprofen (which, if i understand correctly isn't even supposed to work with cluster headaches?) and a nasal spray if those didn't work. i haven't used any of these prescriptions as i haven't found it necessary.

[CHfather]

yes, you're right--ibuprofen won't touch a real CH attack.  the nasal spray might be sumatriptan, which actually can help with a CH attack.  if it is sumatriptan, i suppose you might try it and see what happens.  i have never heard of CH presenting with such mild symptoms that a person doesn't even bother taking meds to try to relieve it.  most people remember very well their first CH attack, and there was nothing mild about it.  then again, i think i know a lot about CH, but i was surprised to see a red eye listed as a common symptom in so many places, so i can't say for certain that your doctor is wrong, as much as i think that she is.