Allow me to introduce myself. The name's Tim Jude, True Romantic. ^.^

I'm new here, and actually stumbled across it from the Wiki of Cluster Headaches. (Who knew people would actually click on the link from there? Have you seen that wiki page? There's over 50 links! lol)

Anyways, though my specialist diagnosed me with Cluster Headaches, I can't help but think he EITHER matched a few symptoms and just labeled it as this, or mine just haven't progressed to your all's level. Or maybe mine's a bit different, iunno.

I don't have a beast. I've always thought of it more like a shadow itself. (Sort of like, the 'shadow' warnings are just the CH getting into position for a precise strike.) I don't get cycles. I have a constant headache. 24/7. When I go to sleep, wake up, work, eat, play video games. It gets better at times, it gets worse at times. That I can get use to. I'm almost 20 and I've had it since I was 13, so I've grown accustomed to a little pain in things. But it's the, what I've called, Headache Spikes, that have been issues. They sound more related to everyone's "Cycles".

I've tried the Imitrex (Way too expensive to keep up on) and I'm on Propanolol as a preventative... However that lowers blood pressure, and mine's down to... Well iunno. 120/80 is normal. I was at 80MG and my blood pressure was 80/64, and I've gone up to 100MG a day, so it'd be even lower... I've only almost-passed out once, but I usually always have caffeine at my side to help counter-act that.

Anybody can ask questions or feel free to comment, or PM me. I'm here more for others than myself. I hate telling friends specifically because it feels like I'm being the stereotypical teen with the whole "Look how much pain I'm in, pity me and give me attention and drugs" and it bugs me, so I'll tell it publicly in a society that everyone understands! =)

Oh, and btw, I'm a True Romantics because Love is my entire life, and my gf is not only understanding of this pain, but is extremely worried and tries to do anything in her power to help me... She's so awesome. =)

Hello Tim, nice to meet you but I'm sorry its here!
Where are you, in the world I mean?! It will help with telling you how to go about treatment etc.

I'm concerned that what you have doesn't sound much like clusters.
Can you describe the spikes a little? What happens?
How long do they last?
What if any autonomic symptoms do you have?
Have you had an MRI?
Do I ask too many questions?!
You don't HAVE to answer that last one!

Seriously though, the MRI is essential. Are you seeing a headache specialist neurologist?
What other meds have you tried?
I am quite sure we can help with advice you can discuss with your doctor. We aren't doctors but we ARE expert patients. We don't know your medical history and we can't give diagnosis but we can help with suggestions and avenues for you to explore.
We can give both you and your girlfriend a lot of support too so bear that in mind!

Sure, Ripley NY. Close to Erie, PA.

Headache Spikes are intense. Lights and Sounds sometimes affect me horribly, or sometimes don't make a difference at all. I'll usually curl up on a couch and grip the blanket while crying and wait for it to pass by. They can last a good hour or two.

Autonomic symptoms would be runny nose, and tearing, and that stuffy nose basically. It differs at times. What's odd is that I'm rarely ever sick, so for me to have runny nose's and watery eyes was really odd, until I read it was a symptom, and then I told myself "Yeah, I guess that helps promote his diagnosis.."

I've had CAT scans, blood work done multiple times. This did start when I was around 13 and I've had a lot of tests and scans so I'm not sure if MRI was one of them or not. Seeing as how it's a big scan, I'm sure I had it at one point.

And no, you aren't asking too many questions. =P Though I am seeing a "headache specialist neurologist"

And as for meds, I couldn't tell you other names besides the one I'm on now, Propanolol. But I can say that I've only tried a couple others. I didn't want to resort to meds, seeing as how I'm a teen and didn't want to be seen as some druggy or pill popper.. I still feel guilty getting 3-month supply from Wal-mart of the Propanolol. I can say that we've tried a lot of other things. Diets of what to eat and what not to eat, seeing if I'm addicted to caffeine or not, ect.

And thanks for the welcome, though yes I wish it was somewhere else as well.. =/ This place makes you want to say "Oh yeah, and sorry, I know how you feel though." After every post. >.<

Welocme to the board! Yeah an accurate diagnosis, especially for a young man like yourself, can be tough. In my late teens my attacks were relatively mild, the cycles weren't easily identifiable, and I wasn't diagnosed until my early 20's.

Stand by to stand by because if it is CH there's a strong possibility they'll gain in intensity as you age. Suggest you read the oxygen info link on the left and discuss that option with your doc. If that proves effective it'll go a long way towards confirming the CH diagnosis.

Joe

I have to say that despite the autonomic symptomes which can be misleading, it doesn't sound much like cluster's. Most people with CH rock or pace but not all. That isn't conclusive by any stretch. What bothers me most is your continuous background headache. Does that ever go away? I mean do you have like a week or month or a time period with continuous headache and spikes and then it all goes or what?

Being sick isn't a normal symptom with CH although, sometimes the pain is so severe it can make me sick. Nausea is more commonly associated with migraine.

Please note, I'm saying "usually" and "commonly" - having a symptom that falls in or outside the normal range doesn't make it any more likely or unlikely. One of the most difficult things about CH is it's ability to morph between us, it's like the ultimate designer headache. We all have one of a kind, different treatments, triggers and ways of coping. Our aim is to help you find what works for you.

Incidentally, for ch'ers, caffeine is a godsend. CH is a vaso dilating headache disorder and caffeine is a vaso constrictor. That's way it can give people headaches but for us, it works in a similar way to imitre and red bull in that it constricts blood vessels thus reducing the pain.

I forgot to ask earlier - where is the pain? Is it one sided or on both sides of your head? Where exactly does it hurt?

There are other headache disorders which can be continous with spikes such as Hemicrania continua.
I'd like you to have a look at this link and see if it describes how you feel.
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I also found this which may be of interest.
"
Long-lasting autonomic symptoms with hemicrania (LASH) is the rarest of the TACs, and has been only recently described. Patients suffer attacks of autonomic symptoms such as ptosis, eyelid edema, lacrimation and nasal congestion which precede headache by 3 - 4 hours. This is then followed by severe side-locked headache, with continued autonomic symptoms. Unlike the other TACs, there are migrainous features like nausea, vomiting and photosonophobia. These attacks last much longer (1-3 days), and may occur at a frequency of once per week. Unlike migraine, these attacks are completely responsive to indomethacin, but show no response to verapamil, oxygen, sumatriptan or opiates."

"Seeing as how you're a teen" - I hadn't realised that before. I am a CH sufferer and a mother too. My son also has CH. I know this pain from all angles, as both a sufferer and a supporter. Not only do I know what you are going through but your parents too. If they want anyone to talk to please send them along. I would be more than happy to give them support and feed back too, in fact we all would

You're one of us now!

Helen

WOW!!!  He bows, he's a true Romantic and he's from New York?????    Sorry I couldn't resist that, but I'm just teasing you a little. 

Like Helen, What you describe doesn't sound like CH to me either, and maybe you can feel grateful for that.  Please give that girlfriend a huge hug from all of us here.  She is worth her weight in gold for being so supportive.

Anytime someone as young as you comes here, most of us go into protective and motherly mode. You siad you've had many MRI, Cats scans and the like to rule out other possibilites, so that's a good thing.  Are you in a postion to change Neuros?  The one you have,  seems like he's feeling his way around in the dark and doesn't have much education regarding headaches. 

Please keep coming back here to report.  We care.

Linda

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Houdy welcome. Here are some common treatments.
the bb
Look into high flow 02 :D

Linda_Howell wrote on Nov 3^rd, 2009 at 1:55pm:

WOW!!!  He bows, he's a true Romantic and he's from New York?????

They breed 'um good there Linda! I can vouch for that  ;)

Lol, aww. Well don't go judging me based on New Yorkers, nor the other way around! I'm a True Romantic, for love is everything to me. The two quotes in my signature are mine. =) No need to apologize for the teasing.. If I could blush, I would have. >.<

Anyways, yeah the autonomic symptoms seem pretty generic. I mean, they are also symptoms of HOW many other virus's and diseases? Even the common cold AND flu. So I know you shouldn't make any final decision based on those alone. I just looked at them and noticed I had a couple. So even if my specialist isn't that educated in this specific field, I can see how he matched a few things and came up with CH.

So he may have gotten CH as just a guess, or maybe he's good enough to see I'm in some early form and it just hasn't progressed this far yet. I did find it odd that my headaches started at 13 and according to Wiki, CH's are mostly diagnosed inbetween the ages of 20 to 50.

So maybe I have it and it just hasn't gotten that bad, or maybe I don't have it at all. In which case, if I don't, I'll still stick around here. Headache Spikes are bad and it's nice to know those that understand headache pain to such a degree.

No, my constant headache may dull to a tiny annoyance, but it's still very well there. Some Perfume's or Nail Polish Remover especially (Live in a house with 2 sisters and a mom) can set a headache spike. But then again those are powerful aroma's that could make anybody have a headache, so I know that doesn't mean anything either. The pain itself (Headache Spikes and the Constant) are mostly on my temples. Headache Spikes have double meaning, both a Spike in the pain, and the feeling of an actual spike. The back of my eyes do ache but get bad only during Headache Spikes. As for sides of my head, I'd have to say it's a pretty even pressure. But if I think about it, it's usually a bit worse on my right side most of the time.

Caffeine, well I love it anyways. I do admit it helps but I usually always have it running through my system anyways, in an attempt to keep me, and my body, awake. To counter-act my preventatives from lowering my blood pressure and drowsiness being a side effect.

Thanks for the link (Both of you) I'll make sure to look into them after this post. And for the record, I haven't gotten sick or felt sick from the headaches. And thank you very much for your support. o.0 Definitely have to say this is one of the warmest welcomes I've ever had. *Bows gently* For that fact alone makes me smile. =)

Just one quick point, the "starting at 20 or 30" is misleading. My son was DIAGNOSED at the age of three and getting that diagnosis took some fighting. Luckily I had the power of clusterville supporting me, I don't know how I would have made it (or cope now) without these guys.

I am aware of more teens than I care to count with CH. Luckily it's not that many at all in the grand scheme of things, but one is one too many for me.

I would definitely like you to speak to your doctor about hemicrania continua. It's so very easy to rule out with an indomethacin trial. Indometacin (or indomethacin as we spell it in the UK) is an NSAID, the same category as Ibuprofen so very cheap and easy to take. It's very quick acting too so if it isn't helping within a couple of weeks - it won't. It's absolutely worth a try however it can be harsh on your stomach so you may need something to protect your stomach if it affects you like that. Not a problem, just something to be aware of.

I'm absolutely praying this could be the answer for you and you can get some decent quality of life back. The idea of your teen years being marred by this just breaks my heart.

Oh? Wow, at such a young age? And your own son? I couldn't imagine how hard that must be. =/ You earn my respect just for still being here! =) I'll do anything I can to help you out, just name it.

Ah, well I'll definately look into that. And after reading that article of the link you sent me, I stumbled upon another link that seems to be closer to what I seem to have. Though this doesn't sound exact, it sounds somewhat closer than CH.
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I'll have to ask him about that as well. The thing about that is "a pressing/tightening (nonpulsating) quality" but it's definitely felt pulsating during some headache spikes, but still worth asking about. Thanks for showing me the link, and for the idea's. =)

Tim, one thing about CH is that it isn't normally a pulsating pain.  22 years of this crap, chronically and it has never been anything but a boring and consistant pain behind the eye, temple, nose and teeth for me.

Keep posting here Tim.  We want to know what that Neuro says the next time you see him and we would love it if your GF posted here so we could collectively thank her for standing behind you in this as well as maybe some of our own supporters here can offer her some of their tips and advice. 

Linda

Hey Tim - if you check in today.. HAPPY BIRTHDAY!!!
Hope it's wonderful, pain free and the start of the best year ever for you!

Helen