Hi everyone,

Very glad when I found this website, as I think it might be the answer I'm looking for.

The past 2 months have been sheer hell for me. It all started with my eye...My right eye would get red and painful (but not conjunctivitus red...i can tell the dif). Whatever it was at first went away after a few days...and then about a week later started up again. I would wake up around 4am unable to keep sleeping and notice that my right eye was red again and later in the day there would be horrible throbbing pain right behind it and at my right temple.

These symptoms have continued up until now. I've had at least 1 headache a day for the last month at least, and occasional red eye and blurry vision. Last week I experienced the worst headache I have ever had in my life - I couldnt sleep, couldnt move, couldnt eat, couldnt do anything except lay there with a bad of frozen vegetables on my face/head.

The only other weird thing about it is that my lymph nodes behind my right ear and on the back of my head are also swollen...

I'm turning 25 next month and I read that most people experience their first cluster headache at this age.

I'm just curious if this sounds like a cluster headache...there are some symptoms that dont add up...I dont wake up with the headache like everyone else seems to. I do wake up early for seemingly no reason, and then the headache kicks in 3-4 hours later. Some of the headaches arent as severe as others, just consistent. I've only had sinus blockage with one of these headaches too.

Thoughts? I am very appreciative of all help and advice  :)

We're not Dr's.  Go see a headache specialist.

          Potter

I'm fairly new to the CH scene so may not be the help you need! However you are in the right place, these guys are all extremly helpful and I'm sure will help guide you in the right direction.

As potter said were not doctors and I would recommend you book an appoinment with your GP.

Your symptoms.... one thing that stood out to me is the fact you can lie still, I believe most us cluster heads can do anything but. Also the throbing pain, I have a general 'headache' all day long this feels like a constant burning pain I then have about 4 'attacks' during the night and they wake me. This pain is un describable.

I recommend Reading alot, you will learn loads and I'm sure you will be able to informally make a descision. However your GP is the best starting point. They may refer you to a Neurologist which would be a good step in the right direction.

Good Luck

Hi
Not that I've had much experience with CH my self but in the one cycle that I have had I was never woken up by the beast, not that I won't be.
from what I've read here first cycles can be a bit random, I would have text book regular hits for a day or two and then nothing for a few days , it went on like that for about 5 months and then slowly disappeared ,now I just get those annoying "shadows"(the eye thing ) on a daily basis, but not everyone gets that.

what potter said in his usual brief way is absolutely right you do need to find a specialist, all-tho it is not easy .
Try looking at the OUCH link to the left it has a list of specialists which could be useful .
read all you can here cos there's lots of information on this site.
When you feel your headache starting try drinking a can of red bull , sounds odd but it might just help.

I'm sure some one with more experience will be a long soon, until then welcome , and good luck.

Nigel

ps. as katie posted while I was righting this I would like to point out that I could still lay down through mine for the first few weeks till the kip level got higher(see the kip scale to the left ) I've only got as high as a K8 so far.

No question you have a lot of symptoms of CH. Hope it's not! ;) They totally suck.

Obviously anytime you experience a sympton this extreme, it's time to beat feet to the doctor. A lot of diagnosing CH is eliminating a bunch of other stuff. While my suspicion is you may be a CH'er, it's critical to get an accurate diagnosis as there are hundreds of headache  types, and meds that help some, are useless for others.

For now. Start a diary, as detailed as possible. When they start, how fast they build, how high the pain builds, how long it  stays at peak pain, how fast it goes away, describe the pain itself, stinging, stabbing, boring, throbbing etc. Is your eye always red or just sometimes? Do your sinuses dry up or run? Try and identify triggers: foods, alcohol, sleep cycle issues, hunger etc. So much of an accurate diagnosis is in the details, a good diary is a great diagnostic tool for your doctor.

Get some energy drinks, I like Red Bull sugar free but any containing the combo of caffeine and taurine seem to be effective. At the first sign of an attack, chug one down, many can abort or reduce an attack that way. Help to tide you over until a doc can start getting you figured out!

And it's possible you have CH even if all your symptoms don't line up. I never had a wake up CH the first 20 years I had them. Those didn't start until I hit my 40's!

Please let us know what you find out either way. If it is CH, don't lose this website, it's a life saver! Good luck.

Joe

Thanks for the advice and replies!!

I'm hoping to see my doctor soon and she'll likely refer me to a neurologist...the only reason I havent gone yet is because my boss makes it very hard for me to go to appointments...

Because you all have mentioned that medication for migraines will be completely useless for cluster headaches...that was the biggest thing I noticed the other day when I was in severe pain. I was taking my migraine medication and it didnt do anything at all...didnt even numb the pain in the slightest, so that would explain why.

I'd try the redbull thing but I'm allergic to caffiene...in fact caffiene itself triggers regular headaches and migraines for me. So I guess if caffiene is a remedy for this I'm screwed lol.

MOST migrain meds don't work for CH, there are some crossovers! Imitrex, either the injection or the nasal spray is effective for CH. The pill form generally does not work for us as it takes too long to get into our system.

If it does turn out to be CH, Oxygen, through a non re breather mask, at a flow rate of at least 15 LPM, brings relief for CH'ers in less then 10 minutes. If you turn out to have CH, insist on oxygen.  ;) Good lcuk.

Joe

I can't better what Potter and Joe said.  I'll just reiterate it.  Reread what they said and start now.  Your boss cannot deny you going to the Dr if you get an appointment.  It may be difficult, but so is a brain aneurism or tumor.  No, I don't think you have one, but there are a lot of things that have similar symptoms of CH and you need to be sure.  See a Dr, preferably a HA specialist, get an MRI, and go from there. 

In the meantime, stick around and read!  There is a tremendous amount of info here.  More actually than in most Drs offices.  YOu need to educate yourself and take control of your treatment whether it is CH or not.

Jerry

Quote:

Because you all have mentioned that medication for migraines will be completely useless for cluster headaches...

I must be blind as I dont see that posted anywhere. In fact many migraine drugs DO work for CH only at differant dosages.

Curious, what Migraine med did you try on you headache?

Don

The migrain drug they tried me on early on was Midrin. Worthless!!! :)

Chaos Cat said he tried a med but didn't say what...

Don

You need to see a headache specialist, regardless what your boss says.

Remote diagnosis is impossible, especially in early stages of CH. CH can take years to cristalize into very clear symptoms, so right now you are looking at one of dozens of possibilities.

Although I was lucky to be diagnosed correctly pretty early, compared to many here, looking back, I went through years of precursory symptoms that were nothing like the full feature film.

As others have said, keep a diary, become conscious of your triggers and read all you can in here before going to your appointment.

Hope it's not CH and that your appointment goes well.