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        Cluster Headache Help and Support >> Cluster Headache Specific >> New to board
        
(Message started by: Theo83 on Feb 8^th, 2008, 7:44pm)

Title: New to board
Post by Theo83 on Feb 8^th, 2008, 7:44pm

Hi all. I am new to the board. I am 22 and in Sept. 2006 I started getting really bad headaches. The pain always starts at my left temple and spread to my left eye. When I get a headache, my left nostril burns. My eye tears and eyelid sags as well. At first the burning in my nostril made me think that the headaches were linked to the surgery I had to fix my nose after I broke it but it seems doubtful. I get the headaches everyday for weeks, then I will be fine for a while. The weeks that I get the headaches, I get 3 or so a day. The headaches usually last about 2.5 hours. I generally spend that time rocking back and forth on the bathroom floor (the tiles are cold), which eventually becomes banging my head on the wall and/or giving myself indian burns, anything to distract myself. Once the pain goes away I am exhausted. I usually just laying on the bathroom floor because 1. I am too tired and 2. chances are I'll get another headache in a few hours.

Do you think it could be cluster headaches? Now that I might not be going insane, I am going to look for a doctor just for now (I am in college). Then over spring break I am going to make an appt with my gp. Since Ithe headaches started, I have only told one person because I honestly feel like I am going crazy and it is a huge relief just to tell this to someone(s)!!

Thanks! Hope all is well.

Title: Re: New to board
Post by thebbz on Feb 8^th, 2008, 8:11pm

Sounds like the beast to me. Caffeine helps at the onset. Need to get a referral to the neurologist and get a proper diagnosis. Hang in there. I know it's tough but you are tougher.
all the best
thebb

Title: Re: New to board
Post by AussieBrian on Feb 8^th, 2008, 8:13pm

No, you're not going mad, though pretty well everyone here at ch.com is (except me). Nor are we doctors but between us have more than a little knowlege about this rotten condition.

Over on the left is a button marked 'cluster quiz'. Have a look there and I have my fingers and toes crossed that you fail the test miserably and it's not CH at all.

Title: Re: New to board
Post by Guiseppi on Feb 8^th, 2008, 10:15pm

Great advice by that weird Aussie guy...(gads they talk funny on that side of the world)...take the cluster quiz on the left and see how you score. Then start keeping a head ache diary.

When they start, how long they last how fast they reach their peak, what is their peak...(read up on the kip scale on the left it's a great "pain scale")....how long they stay at their peak, how fast they recede. It sounds to me like Clusters, but the diagnosis of headaches is in the details...the more info you provide your GP, the better the chance of an accurate diagnosis.

For now, try slamming down an energy drink as soon as the headache starts. Monster, Rock Star, any containing the combination of caffeine and taurine. Many can abort a headache that way. Try opening it ahead of time and leaving it on the fridge so it goes flat, makes it easier to slam when the head ache starts.

Then try to get your GP to refer you to a neuro to get an accurate diagnosis. If it is CH, DON'T LOSE THIS WEBSITE! It will be your new second home and we will do all we can to help guide you!

Guiseppi

Title: Re: New to board
Post by sandie99 on Feb 9^th, 2008, 6:43am

Theo,

I recall how I felt when my first ch hits appeared. I thought that I was going crazy, that headache "cannot be this bad". I recall the fear and the uncertainty I had before I was finally diagnosed as clusterhead back in 2003.

I'm one of the energy drink users; they work wonders with my ch. I drink (ice cold) energy drink (with ice) as soon as I feel a hit coming and it takes the pain away quickly. Caffeine tablets help me also when I'm out of the house and do not have energy drink with me.

Before you go to see your gp and perhaps one day a neuro, you will find lots of information about ch and different medications and treatments. Knowledge is power, so the more you know, the better you can fight against tha pain.

Stick around and let us know what your gp says, ok?

Lots of PF wishes,
Sanna

Title: Re: New to board
Post by Bob_Johnson on Feb 9^th, 2008, 8:06am

Print this infro and file until after you see your GP. We have deep experience here that many docs, including neurologists, do not have the training/experience/interest in treating complex headache issues. Too much time, $, an needless failures come from working with the wrong doc.
---------------
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. http://www.achenet.org On-line screen to find a physician.

5. http://www.headaches.org/consumer/index.html 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.

Title: Re: New to board
Post by Theo83 on Feb 9^th, 2008, 9:34am

Hello again. Thanks everyone for the replies. I took the quiz. Based on the evaluation I fall into the "may suffer from cluster headaches" category [smiley=worried.gif]. I also checked out the Kip scale and I have a question, what's a shadow?
Thanks for the advice on energy drinks, I am definitely going to try it! Finding a doctor is just a pain in general, my insurance co. has actually been really helpful in finding a doctor. Unfortunately, the health center on campus is pretty useless. I have a feeling I won't make very much progress (as far as a diagnosis) until I see my regular gp.
Thanks again!

Title: Re: New to board
Post by chewy on Feb 9^th, 2008, 9:50am

Shadows are the low level pain between the big hits. That sick feeling of impending doom.

Title: Re: New to board
Post by Dado9478 on Feb 10^th, 2008, 3:16am

Hi.... I did post this on another board too... just want more ideas...

i am gonna try the caffine drink thing... anything else?

HERE IS MY POST:

Hello All... HELP! Sorry for this LONG post! Bear with me...
I am new to this site. As I read more and more about CH, it sounds alot like me... what do you think???
I have had these headaches for 10 years now. I did have some left sided headaches when I was 16, that were not as intense as these are, then I didnt get anything for 3 years later.
Now for 10 years, since 98, I am getting these left sided headached every year or 2 times a year. They last for 2 1/2 to 3 months. Every day.
It starts out as I hear my heart beat in my left ear, then I start to get "twinges" or sharp pains like a burning knife throughout my left side behind my eye. It peaks at about 10 to 15 minutes. My head feels like it is on fire, the sharp stabbing pains are so bad at times, it moves my whole body, (like a reflex) If you cut your arm you would jerk.... that is what my whole body does. My eye waters, and feels like it is going to pop out with all the pressure. My jaw just aches, like I dont want to even talk since it feels like it will fall off. Or like my teeth are coming out all at once. It feels like all of the vessels on my left side are spasmicing, and my scull is being dug out with a spoon. The pain radiates to the back of my head down my neck at times. With my "Bad, Bad" ones, my arms feel like they go cold.
I do not get nauseated, unless I take alot of meds. Light does not really bother me... I usually perfer, not to be bothered, and go in my room. Sound just bothers me I think because I am in so much pain. It worsens when I lay down. I have to sit forward, or stand...rock. Pray to GOD! I feel like I am going insain. I push against my forhead, and it seems to help for a second or two... but then the sharp knifes stabbing pain shoots through my head again. My head feels heavy like I need to hold it up. Sometimes I feel like I dont want to scream since it makes my head or ear hurt more. Although I do want to just pull out my hair....
I have been seen by many regular doc's. Neurology, ENT, Allergists, Chiropractors, Physical Therapy, Ect.....
I have NO diagnosis yet. One MD said it sounded like CPH. Since I am a female.... this is what I have on CPH:
(((((Chronic paroxysmal hemicrania (CPH) is a disorder with attacks with the same characteristics of pain, associated symptoms and signs as cluster headache, but the attacks are much shorter and more frequent. Pain is side-locked, as in cluster headache, but occurs mostly in females, unlike cluster headache. The headaches are absolutely responsive to indomethacin.
Most attacks last 2 to 20 minutes, never more than 45 minutes, while frequency may be as high as 30 attacks in 24 hours. There is at least one autonomic sign or symptom on the painful side, including conjunctival injection, lacrimation or nasal congestion. Long lasting remission (clustering) is not seen, but the frequency, duration and severity of attacks are variable. Migraine features such as nausea/vomiting may rarely accompany attacks. The major diagnostic criterion is absolute effectiveness of indomethacin. The continuous, chronic stage may be preceded by an episodic stage similar to that seen in cluster headache.))))))))
I am taking Indomethacin right now... and it doesnt take them away all together. Plus the MD doesnt want me to take more than 200 mg in 24 hours......... I have been taking 300 to 400, and I still get the headaches.
So right now I dont really know if the meds work or if the attack is just ending. Since the meds take about 1 to 1 1/2 hours to end. I was taking Verapamil also, but it did not prevent them since I was not taking them everyday in remission. I dont know if like after 9 months I should just start taking them or??? The neurologist said I should take 120 BID, but when my headaches started on the 30th of Jan, I started out on 120 BID, then increased myself to 180 BID, then 180 TID... nothing was taking them away. At the same time, taking the indomethacin high doses. STILL getting them.
I just was reading on this site about the O2... so tonight I was just having the "Phantoms" like the twinges every once and a while and the heart beat in my ear... It worked. It did take it away in about 15 minutes. Then when I went off of it in 15 minutes the "phantoms" came back. Then I did it again, it took it away again after 15 minutes... I stayed on in a little longer this time. Then it took a while for them to come back.
I work NOC shift at a Hospital... So at least I have access to it... while im here...
When I seem to get them the worse is about 9 am... I get done with work at 630, in bed usually by 7 to 730.... then it wakes me up at 9 to 930. Full blown headache! then they usually last until the afternoon. Just when I think they are getting better........ Another one starts!
Some times I only get the one, for about 1 and 1/2 hours, but then get another attack later in the day or evening when I am going to work.
I do not want to loose my job, but after 4 days with hardly NO sleep, I feel like I am not safe, being that I am a nurse.
I am a mother or 3 girls, had them without pain meds.... and yes I would definutly pic child birth.... then a cycle of these headaches! I told my mother.... yeah labor is hard, but it lasts 1 day.....verse 3 months or headaches.... plus you get a baby out of the deal!
There are so many times that I feel like I am losing control.... going insain... I pray to GOD, to stop this suffering... This is taking a toll on my family, my other half seems to get mad... like there is nothing he can do for me.... and no one else is.... so he gets flusterated. He hates to see me suffering with this...
I feel like such a bad mom. I work NOC shifts, so the girls are usually seeing me go through some of these, since they are up during the day... when it is my cycle to sleep. I dont know what to say to them. It just scares them.
My headaches have started at all different times of the year.... spring, summer, winter and fall! (just like the song) sometimes they seem to last longer than others, and some times they are much more severe.
Thank you in advance for reading this... and telling my your input of what you think.
CH or CPH or a mystery???

Title: Re: New to board
Post by seasonalboomer on Feb 10^th, 2008, 8:09am

Sorry to hear you are going through all this. Much of what you describe is stuff that we all deal with on different levels. The length of your headache pain, you describe in one spot as usually less than 45 minutes but in the other as lasting into the afternoon from 9am is not entirely clear. Some do have them last for several hours but it is more often that they are less than 2 hours.

We can't tell you whether you have Cluster Headache or not but the fact that O2 helps you at work would point toward making use of your medical knowledge to get O2 at home. O2, for me, changed my life. Th majority of my hits are at home so I'm able to successfully quell most of my CH problem.

You didn't mention that the doctor has brought up Imitrex as a possible abortive. When the O2 doesn't work for me, or if I'm out in the world, the Imitrex injector works every time for me.

With a good abortive plan you will find that you can have part of your life back because you will feel less stressed about the "what if?" aspect of these things.

Good luck and read on, you may find additional help from many others.

Scott

Title: Re: New to board
Post by Theo83 on Feb 10^th, 2008, 10:02pm

on 02/09/08 at 09:50:17, chewy wrote:

Shadows are the low level pain between the big hits. That sick feeling of impending doom.

Hmm. I get a vague, sort of muffled, dull headache in between the big ones. Almost as if I am remembering the pain of the last headache...would that be a shadow?

Title: Re: New to board
Post by AussieBrian on Feb 10^th, 2008, 10:22pm

on 02/10/08 at 22:02:23, Theo83 wrote:

Hmm. I get a vague, sort of muffled, dull headache in between the big ones. Almost as if I am remembering the pain of the last headache...would that be a shadow?

It's be one of the best descriptions I've so far come across.

Title: Re: New to board
Post by DragonSlayer on Feb 10^th, 2008, 10:48pm

on 02/10/08 at 22:02:23, Theo83 wrote:

Hmm. I get a vague, sort of muffled, dull headache in between the big ones. ~~Almost~~ as if I am remembering the pain of the last headache...would that be a shadow?

Yup! That's what I would call a good explaination of a shadow.

chewy's "That sick feeling of impending doom." works pretty good to.

Title: Re: New to board
Post by kevmd on Feb 11^th, 2008, 7:29am

Theo
I started getting thes in college my self. It was 2nd nigh at college, and bam!!!! Didn't know what the hell was hitting me. Every fall at college they came back worse and worse. I was told I had a sinus infection. I hope you do not have these but if you do, you are ahead of the game. Get into a neuro ASAP to get you on some meds. Don't rely on the health center. I was walking in there twice a week holding my head in agony and kept getting anibiotics. I know I am not always the most optimistic but finally getting a diagnosis and some meds has helped my life out a ton. Educate yourself and walk into your doctor armed with info. Clusterheads are probably the most educated patients in the world because we have to be. Good luck, stay strong, and kick some cluster a$$.

Title: Re: New to board
Post by Theo83 on Feb 11^th, 2008, 10:17am

Man, you guys have everything cover. [smiley=bow.gif] I thought I was just being a spaz.

Kevin- I am sorry the health center at our school was so unhelpful. That seem to be the trend. I don't even bother with the health center on campus, I learn in a very painful way (surfing incident) that it is just a huge waste of space.

Title: Re: New to board
Post by sandie99 on Feb 11^th, 2008, 10:30am

Sometimes university healthcare system can help: back in here, it's volutery to belong to YTHS, university's healthcare system. I decided join, luckily, and during my first spring of MA studies my university healthcare system added a neurologist to its cheap services.

In practice it means that I will need to get a refrence letter from YTHS - which I can get from a receptionist. After that I can make the appointment with the spesific neurologist (it takes just a month when you're in luck!) and when I show the reference letter, I'll be charged just 14 euros/21 dollars (normally it costs about 100 something euros to see a neuro).

The neuro I saw via YTHS was the best one here in Middle Finland area. He was ok, although not the best neuro I've met. If I'd want to go back to medications, I'd book an appointment to see him via YTHS, no question about it.

Sanna

Title: Re: New to board
Post by hotprestwich on Feb 11^th, 2008, 10:36am

so sorry that the beast has chosen your head to play his tunes in,
when i first started to get clusters, i did'nt really notice the shadows untill i had 3 or so cycles,
this last cycle for me was shadow city for the last couple of weeks, no attacks but i knew he was always there and it felt like i was going to get hit but it never came,
i think that if your getting lots of shadows the beast is on his way out or in, also took no pain killers this cycle, i think thats what made me feel so many of them,
i wish you a short cycle and many pain free days and nights.

Title: Re: New to board
Post by Theo83 on Feb 11^th, 2008, 11:09pm

Thanks everyone for all the info, advice, etc.

Going to the doctor tomorrow, so I guess we'll see... :-[

Thanks again, ou guys are really great!!

Title: Re: New to board
Post by Theo83 on Feb 12^th, 2008, 5:16pm

Went to the doctor today. He's pretty positive that my headcahes are cluster headaches, so he gave me a referral for a neurologist.

Title: Re: New to board
Post by Guiseppi on Feb 12^th, 2008, 5:29pm

Congrats, getting the referral is a huge first step! Here's hoping he's up to date on his CH stuff! ;)

Guiseppi

Title: Re: New to board
Post by maryo on Feb 13^th, 2008, 3:15pm

Hey Theo and Dado,

Girl-to-girl, a lot of female headache sufferers don't get properly diagnosed. I work in an ER and very often, eyes rolls when a woman comes in with headache. My advice is to take the bull by the horns, scour this website and OUCH.com, and come up with a game plan for sorting things out. The OUCH website has info on how to find a doc, how to work with a doc, and other helpful documents.

In my case, I suffered 20 years without a diagnosis. It was ME who told THEM what my diagnosis is, and I only figured it out after taking the survey on this website. Some of the people who failed to diagnose me jumped to conclusions; many did not obtain a good history; but part of it certainly was that I was female and their books told them I had to be male to have CH.

By the way, I also had migraines (until menopause).

Take heart and take charge! Good luck!

Title: Re: New to board
Post by sogna on Feb 13^th, 2008, 3:55pm

*jumping in here*

Hi all! I'm new too.....Dado and Theo, I'm sooo feeling ya (well and everyone else here)!

I haven't been diagnosed yet, but will make a visit to my gp for a referral.

Maryo, you poor thing....I could not imagine going 20 years without a proper diagnosis.