Click this link to read a post I like on the clusterheadaches.com message board...

Bethany

CH.com Newbie

Offline

I Love CH.com!

Posts: 2

Not quite fitting the CH Mould...
Nov 28^th, 2008 at 8:07am

Hey there, I'm 22 and got my first CH about 2 months ago. I don't smoke, don't really drink, I'm a Youth Minister so plan and run programs for teenagers and young adults at a Catholic Church, and still living at home.
When mine started, it was initially a migraine and for a few days after I had a headache which isn't too unusual for me but when I still had headaches two weeks later I went to the drs. After a few visits and tests she diagnosed me with CH's. The thing is, mine don't seem to be quite the same as everyone else and I'm a little confused.
My first lot lasted for over a month, went away for a week and are now back. It feels like something is pushing behind my eyes and there just isn't enough space, it's not a stabbing pain it's just a constant pressure. I occassionally get stabbing pain but haven't had it this round yet. Any light stronger than a candle is really painful. I can't drive at night time because other car headlights are just too bright, it feels like they've got their high-beams on or something when they dont. I can deal with talking if there's one conversation but I can't cope with multiple people talking at once, it just hurts so much. I get really dizzy and disoriented but I think it's a side effect of the pain, I've only been nauseus after taking strong medication. It gets that I can't walk downstairs because I'll trip.
I can barely read, everything feels just slightly out of focus even though I can see it perfectly fine, its clear but it's not right and trying to read or write is ok for a few minutes and then I start going cross-eyed (and yes, I've had my eyes tested and nothing out of the ordinary there). I think more than anything, this is what's getting to me, I'm a BIG reader (as in a book every day or two) and I can't read. I'm not really a tv person, just my books and I've gone to audio books but when I have a headache, I don't really want to listen I just want it quiet.
I'm not sleeping because of the pain, I wake up with it but it's not like I wake up with searing pain, I wake up with this horrible throbbing pain. Most days, I will get up, no headache, half an hour to an hour later it sets in, other days I wake up in the morning with it.
This time round I can feel the headaches getting worse each day but everything I've read about CH (and i haven't worked my way through all the message boards yet) seems to suggest that the stabbing, sharp pain is like 'the' characteristic but I don't really get that (5 times in the last lot).
Going by the Kip Scale, I spend most days going between 3 and 4. My last bout, I hit 7 a few times. I'm not quite how to describe it... I get to the 'why me'/depression stage but not because of the stabbing pain, I hit it because I'm so incapable of doing ANYTHING and I can't deal with that. I'm hungry but I don't want to eat and even if I do I'm so out of it that I can't even make myself a sandwich. I can't string proper sentences together. I can't even watch TV because the moving pictures make me feel worse.
I guess what I'm wondering is, are these really CH's? Yeah I get occasional stabbing pain but it's nothing to what other people are describing, I feel like mine is just this constant headache that won't back off already and is just bad enough to be debilitating and then it's not that bad all the time. Or is this normal? Is this just because it's only two months in and should I be prepared for worse to come?
I dunno, they're still so new and it's freaking me out somewhat, I'm normally a very healthy person so I just don't know what to think.
Anyone's insights here would be fantastic. Cheers.

Back to top

IP Logged

Click Here to visit the CH.com Facebook page!

Bob Johnson

CH.com Alumnus

Offline

"Only the educated are
free." -Epictetus

Posts: 5965
Kennett Square, PA (USA)
Gender: male

Re: Not quite fitting the CH Mould...
Reply #1 - Nov 28^th, 2008 at 9:13am

It's frustrating that when first starting to have regular headaches the symptoms are often not clear, varying rather often, the quality and location of pain changes, etc. It may takes weeks to months before you have a stable picture to help with diagnosis.

At this stage, it would be best to start looking for an experienced doc to help you. Self-diagnosis and treatment is not useful or wise.
=========

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3. Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Look for "Physician Finder" search box. Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

Back to top

Bob Johnson

IP Logged

coach_bill CH.com Hall of Famer Offline "Dont expect me to lay down for this" Posts: 680 x0\|euclid\|USA\|\|0\|0\|OH,Ohio Gender:	Re: Not quite fitting the CH Mould... Reply #2 - Nov 28^th, 2008 at 9:15am sorry to hear about your headaces, it dont sound like a classic case of clusters, did you take the cluster quiz on the left?? and beleive me there is no shame in NOT having clusters. after all i wish the doc was wrong with my clusters but unfourtunely he nailed right on the head with me. Coach Bill
Back to top	boy i cant wait till it's my turn to give him a headache. paybacks a bitch IP Logged

Charlotte

CH.com Alumnus

Offline

Posts: 2385
Patterson,California
Gender: female

Re: Not quite fitting the CH Mould...
Reply #3 - Nov 28^th, 2008 at 10:08am

hello Bethany. I know what you mean about not being able to read. When I'm good, I read a book every day or two also.

Are you on medication for ch or migraine? For example, if you are on verapamil, that can reduce the pain and symptoms quite a bit. Sometimes it takes trial and error to find what works, and often it takes a combination of 2 or 3 meds.

Unfortunately, sorting this out can be like peeling an onion. You can have more than one type of headache going on at the same time. One sorting tool is the length of time the headache lasts and/or the type of meds it responds to.

I have found ice packs, slamming a red bull, and/or O2 all help with several types of short headaches. My daily meds are verapamil & indomethacin.

Medications are also odd, because ch seems to morph, and a medication will sometimes stop working or start working. This has happened to me many times over the years.

Good luck. I hope you find something that will let you have the pleasure of reading again.

Charlotte

Back to top

IP Logged

Charlie

CH.com Alumnus

Offline

Happy to be here

Posts: 18971
Jamestown, NY
Gender: male

Re: Not quite fitting the CH Mould...
Reply #4 - Nov 28^th, 2008 at 7:39pm

Hi Bethany but sorry you have to deal with such horrible headaches.

Yours sound different because you even consider reading or sitting still to do so. These headaches wake us out of a sound sleep and it's impossible to lay down while being hit. I would get five or six hits a day for about 20 minutes each with some variation but they were similar. I would go to the kitchen, sit and squirm in chair with my head in my hands. I wanted it dark, cool and quiet while battling these things. The ending of the episode seem to me like it was "draining" out of my head in less than a minute.

I just wanted to describe mine so you might have something to compare. Find a good neurologist and let us know how you're doing.

Charlie

Back to top

There is nothing more satisfying than being shot at without result---Winston Churchill

IP Logged

MrsT

CH.com Veteran

Offline

I Love CH.com!

Posts: 100
San Diego, CA
Gender: female

Re: Not quite fitting the CH Mould...
Reply #5 - Nov 28^th, 2008 at 11:34pm

Hi, Bethany. So sorry to hear you're experiencing such a bad daily ordeal.

It doesn't sound like CH, but I am a "textbook" episodic case who was originally diagnosed by a GP in 5 minutes. It is important that you get a proper diagnosis as your story sounds too complicated. You don't want to miss something important that needs serious medical intervention. The thing about CH is that it's nothing but bad bad pain. It won't kill us. When I'm not in cycle, I can eat and drink anything or do any physical activities or smell and feel anything that could trigger an attack in cycle.

Pain measurement is very very subjective. The KIP scale isn't something I can totally subscribe to as it doesn't fit the description of my CH developing from 1 to 10---and my 7 could be somebody else's 5 or 9. Or, maybe and maybe what I *think* is KIP 10 isn't the maximum of pain I could possibly experience (I don't want to know!) It's not easy to explain the CH pain to others; unless one has personally experienced childbirth (common but the condition varies) or limb amputation (uncommon) without anesthetic, it's near impossible to relate CH to other pains.

I have however had a similar degree of pain to the worst untreated CH attack. TEETH!! I had no dental insurance or money while in college, and I let one tooth cavity eat up the tooth deep enough to affect the bone. It was as bad as my worst CH. Another one was a tooth nerve (a LIVE tooth, mind you) being drilled and pulled without anesthetic for whatever the reason the dentist had over 30 years ago. I can put up with most pains, but that HURT like a SOB. The worst CH feels like a live tooth being drilled to the bone non-stop for an hour. I believe the majority would be close to going insane. In the middle of the worst CH, I often wondered in early years why it's not the body's natural defense mechanism to let me pass out to escape the pain.

In any event, I really hope doctors can find out what exactly is going on to cause your headaches. I pray as well as other members here that you don't have CH but something that's fixable. No person deserves any kind of BAD pains that consume our lives.

Back to top

IP Logged

Pixie-elf

CH.com Hall of Famer

Offline

I've tried the rest, and
busting is the best!

Posts: 517
Beaumont,Tx
Gender: female

Re: Not quite fitting the CH Mould...
Reply #6 - Nov 28^th, 2008 at 11:54pm

Okay, first of all, I would request a consult with a neurologist.

There are a lot of things that can cause all of the things you describe. You need MRI's, CT scans, and if those come out clear, a lumbar puncture to measure your intracranial pressure.

What you describe sounds more like several other kinds of headache that are SERIOUS life-threatening problems. Some I've had before, or know someone that has had them. S0 please, get a full exam. I don't want to scare you, or freak you out, but I also don't want you to sit around and let this get out of hand.

Either way, I hope that your pain is better soon...
Mystina

Back to top

As far as I'm concerned, cluster busting has been the best treatment I've tried. No migraines since I started it, and my hits have gotten so much better. Wanna know more?
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

It's saved my life.

IP Logged

UnderTheRadar

CH.com Old Timer

Offline

Literally

Posts: 383
Texas
Gender: female

Re: Not quite fitting the CH Mould...
Reply #7 - Nov 29^th, 2008 at 3:58am

Now, just to be fair, this sounds EXACATICALLY like what I went through for the first 2 or 3 months of this cycle; especially the parts about seeing fine but feeling "crosseyed" if you try to read. Try being a Graphic Design major and not be able to look at a computer screen!!
BUT, then I started to get more "traditional" symptoms, and it wasn't responding to any other other forms of treatment for other illnesses, and MRI's and other tests showed nothing.
I don't know what's worse to tell you- "sorry, you don't have CH" or "just wait, maybe you'll get the REAL symptoms!" harhar. Wink

I also get chronic migraines, which mask the symptoms of other illnesses. And I've read in a couple of journals that researchers are starting to think that women may present CH differently than men- there's so many more men than women with CH (6 to 1) that it's hard to tell. Good luck! Tongue

Back to top

Remember- double-line the foil, shiny side out.

IP Logged

purpleydog

CH.com Alumnus

Offline

Posts: 2732

Re: Not quite fitting the CH Mould...
Reply #8 - Nov 29^th, 2008 at 9:40am

Bob Johnson wrote on Nov 28^th, 2008 at 9:13am:

It's frustrating that when first starting to have regular headaches the symptoms are often not clear, varying rather often, the quality and location of pain changes, etc. It may takes weeks to months before you have a stable picture to help with diagnosis.

At this stage, it would be best to start looking for an experienced doc to help you. Self-diagnosis and treatment is not useful or wise.

Bethany, it is possible to have more than one type of headache going on, and as Charlotte said, it can be like peeling an onion, finding out what is going on.

Start a headache diary, with times, symptoms, what you are doing, what you have taken, food & drink, length of the headache and your pain level. Keep this up until you can get in to see a neurologist, or a good headache specialist, and take it with you.

Bob has listed a good link to find a good doc in your area, Please make an appt. as soon as you can.

Like Bob said:
Quote:

It's frustrating that when first starting to have regular headaches the symptoms are often not clear, varying rather often, the quality and location of pain changes, etc. It may takes weeks to months before you have a stable picture to help with diagnosis.

This is why having a headache diary is important to keep.

In the meantime, using strong coffee or energy drinks (with 1000mg of taurine), like Red Bull, or AMP or Rock Star can help. Slam one down as soon as you feel one coming on. Ice packs can help too. Also, read all the links over to the left, there are lot's of tips there. We aren't doctors, so we can't diagnose you, but can relate our own experiences to you.

Keep asking questions, and let us know how you are doing.

Back to top

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

IP Logged

Click Here to visit the CH.com Facebook page!

Bethany

CH.com Newbie

Offline

I Love CH.com!

Posts: 2

Re: Not quite fitting the CH Mould...
Reply #9 - Dec 1^st, 2008 at 1:48am

Hey Everyone,
Thanks for all of your responses

I'm waiting for my appointment with my neurologist, my GP has been really great and contacted them herself in hopes that it might get me in a bit quicker.
I've tried a few different medications without any success, they either make me really sick or don't do anything. Interestically enough nurofen (ibuprofen) will just take the edge off whereas some of the prescription medications haven't done anything at all. My dr is still helping me to find something that helps in the meantime but is also trying not to mask symptoms in the early days incase she misses something.
I'm not totally convinced I have cluster headaches, I did the quiz and seemed pretty border-line but I'm just waiting to see the neurologist now and hopefully he can give me some answers. The 24/7 frustrating but only borderline-debilitating headaches and no stabbing-pain headaches just seem a bit too different. Fingers crossed it'll turn out to be something not so serious and easy to manage (no offence intended to anyone who is unfortunate enough to live with CH's). The more I learn about CH's the less my symptoms seem to fit in but until I get diagnosed properly - who knows?
Thank you for all the suggestions though, I've been using ice and that's been helping to take the edge off. I tried a red bull and it didn't do anything but a random can of Dr Pepper a friend bought me helped, (I love Dr Pepper but it's quite hard to buy in Australia) so I might try that again. I've also been keeping a food/sleep/headache diary.
Thanks again, Bethany.

Back to top

IP Logged

Rolomatic Ex Member	Re: Not quite fitting the CH Mould... Reply #10 - Dec 1^st, 2008 at 1:54am Hi Bethany, It might be worth a try to call appointment scheduling and see if they have a cancellation list. If they do and someone cancels on short notice they will call you to see if you can make it. Good luck, and hope you get in soon! PF’s to you. Rolo..
Back to top	IP Logged

-johnny- CH.com Sponsor Offline theres no smoking on the dock Posts: 1642 fayette county ohio Gender:	Re: Not quite fitting the CH Mould... Reply #11 - Dec 2^nd, 2008 at 1:29am i once met a security guard that had some type of headache that involved her trigeminal nerve but it wasn't ch. i wish i could remember what the heck it was called. when i get home to a real computer i'll see if i can't find that thread somewere. please keep us posted.
Back to top	Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or IP Logged

Rolomatic

Ex Member

Re: Not quite fitting the CH Mould...
Reply #12 - Dec 2^nd, 2008 at 1:39am

-johnny- wrote on Dec 2^nd, 2008 at 1:29am:

i once met a security guard that had some type of headache that involved her trigeminal nerve but it wasn't ch. i wish i could remember what the heck it was called. when i get home to a real computer i'll see if i can't find that thread somewere.
please keep us posted.

I think you are looking for (in your memory) trigeminal neuralgia?

Roll on bro!!

Roland.

Back to top

IP Logged

-johnny-

CH.com Sponsor

Offline

theres no smoking on the
dock

Posts: 1642
fayette county ohio
Gender: male

Re: Not quite fitting the CH Mould...
Reply #13 - Dec 3^rd, 2008 at 12:29am

Quote:

-johnny- wrote on Dec 2^nd, 2008 at 1:29am:

i once met a security guard that had some type of headache that involved her trigeminal nerve but it wasn't ch. i wish i could remember what the heck it was called. when i get home to a real computer i'll see if i can't find that thread somewere.
please keep us posted.

I think you are looking for (in your memory) trigeminal neuralgia?

Roll on bro!!

Roland.

thanks roland. thats what it was. the symtoms were very similer but exact. i posted a thread on this topic a while back. when i get back to a real computer in a couple weeks i'll post a link. Wink

Back to top

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

IP Logged

Rolomatic Ex Member	Re: Not quite fitting the CH Mould... Reply #14 - Dec 3^rd, 2008 at 12:55am Johnny, Pretty much the only test for it is if you respond to Tegretol Safe roads to ya! Rolo.
Back to top	IP Logged

	Welcome, Guest. Please Login or Register
	Search box updated Dec 3, 2011... Search ch.com with Google!