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        Cluster Headache Help and Support >> Cluster Headache Specific >> Do I have clusters?
        
(Message started by: soggy on Apr 3^rd, 2007, 5:13pm)

Title: Do I have clusters?
Post by soggy on Apr 3^rd, 2007, 5:13pm

I am a 39 year old man and have been a picture of health most of my life. 1 month ago I started get these pains around my left eye, felt like pressure, while trying to go to sleep.

I have gotten to a doctor now and they are trying to figure out what is wrong with me.

I have a breathing test scheduled and after that the doctor says I might need a catscan and brain scan.

These attacks are not every night. The doctor put me on Relpax which is very expensive and flonase.

Does this sound like clusters?

Thanks in advance for any help.

Title: Re: Do I have clusters?
Post by georgej on Apr 3^rd, 2007, 5:20pm

'Afternoon,

Take the cluster quiz over at the left of the screen and see how you score. It may give you some indication whether you are getting CH or not.

Going to a doctor for diagnosis is certainly the right thing to do. If your diagnosis is not resolved after you receive a CT scan, consider seeing a neurologist who specializes in headache--not all of them do.

I hope you don't have CH, but if you do, we'll try to help you through these in any way we can.

Best wishes,

George

Title: Re: Do I have clusters?
Post by soggy on Apr 3^rd, 2007, 5:27pm

thanks george, according to that test, i do.

it is clear to see i am not alone.

what is my next step and what should i be telling my doctor?

Title: Re: Do I have clusters?
Post by Guiseppi on Apr 3^rd, 2007, 5:37pm

Welcome to the board, I hope you're wrong and you don't have CH, it sucks! If you do, welcome to your new home away from home.

Start keeping a headache jopurnal, when they start how fast they build, read up on the "kip scale" link on your left and plot out your headaches. You will want to discuss preventaive medications, meds you take to reduce the severity and frequency of your headaches, lithium, verapamil, topomax, and several others. Then you need an abortive, something to stop the damned things when they start. You need to get oxygen, it is a great abortive for many of us. Using a non re breather mask at a high flow rate, up to 15 lpm, many can stop a headache in less then 10 minutes. Other abortives are imitrex and cafergot.

For now many people have success slamming an energy drink like Monster at the first sign of a headache. Others have success using just caffeine, powering down several cups of coffee.

All that being said, a warning. You will find most doctors know very little about CH. You have to educate yourself then educate them. Welcome to the board.

Guiseppi

Title: Re: Do I have clusters?
Post by soggy on Apr 3^rd, 2007, 5:53pm

thanks for all the help. I have a younger brother I have now found out has the same thing going on.

Are these genetic?

As far as oxygen goes, do you need a prescription for this? Do most insurance companies cover this?

I am on Relpax for now.

Title: Re: Do I have clusters?
Post by georgej on Apr 3^rd, 2007, 6:01pm

on 04/03/07 at 17:53:57, soggy wrote:

thanks for all the help. I have a younger brother I have now found out has the same thing going on.

Are these genetic?

There's some good evidence that they may be weakly inherited. A number of people here have parents, siblings, or children with CH.

That being said, however, most of us here are the only clusterhead in our families.

Best,

George

Title: Re: Do I have clusters?
Post by ClusterChuck on Apr 3^rd, 2007, 6:14pm

on 04/03/07 at 17:53:57, soggy wrote:

As far as oxygen goes, do you need a prescription for this? Do most insurance companies cover this?

Yes, you do need a prescription for oxygen. And most insurance companies WILL cover it, but you may have to fight them first, to get them to agree to cover it.

If you cannot get the doctor to prescribe it, let us know, and we will help you get set up with welding oxygen (no prescription required, but insurance won't cover that). Welding oxygen is just as pure, and just as safe to use. Many here use it, with great results.

Welcome aboard!

Chuck

Title: Re: Do I have clusters?
Post by Redd on Apr 3^rd, 2007, 6:21pm

Could you please let us know what parts of the quiz point to to CH in your case? What parts don't fit? What parts are a bit of both?

That could help us point you in the right direction.

Title: Re: Do I have clusters?
Post by soggy on Apr 3^rd, 2007, 6:32pm

on 04/03/07 at 18:21:36, Redd wrote:

Could you please let us know what parts of the quiz point to to CH in your case? What parts don't fit? What parts are a bit of both?

That could help us point you in the right direction.

Well, I pretty much aced the test, so to speak. I have a breathing test coming up on the 11th that I am thinking is going to be pretty fruitless.

Will certain things show up on a CT scan and brain scan?

Title: Re: Do I have clusters?
Post by ClusterChuck on Apr 3^rd, 2007, 6:36pm

on 04/03/07 at 18:32:45, soggy wrote:

Will certain things show up on a CT scan and brain scan?

If anything shows up on either one, most likely you DON'T have ch ... The tests are to rule out anything else. There is no test to PROVE you have clusters. It is a diagnostic conclusion, AFTER ruling out other causes.

Chuck

Title: Re: Do I have clusters?
Post by georgej on Apr 3^rd, 2007, 6:40pm

on 04/03/07 at 18:32:45, soggy wrote:

If it turns out that you have CH, more than likely the CT scan will be negative. The purpose of the CT scan is to rule out possible physical abnormalities that could be causing your symptoms. It's good to rule out physical abnormalities that could be causing secondary headache symptoms before you proceed.

Best,

George

Title: Re: Do I have clusters?
Post by soggy on Apr 3^rd, 2007, 6:49pm

well, on the bright side I owned a coffee company for 10 years before selling.

I drink it all the time.

My attacks are coming mostly an hour after laying in bed.

Thanks for everyones help and I promise to keep everyone posted.

Title: Re: Do I have clusters?
Post by pieface_49 on Apr 3^rd, 2007, 7:18pm

Hello Soggy, welcome to the board. Print the cluster quiz results as well as the medical info found on the left. Go to Google and type in "Cluster Headaches" and you will find a lot of information. Check out the OUCH website listed on the left. I am going to the Neuro next Monday armed with my diagnosis and information. I am not sure what question I will pose? 1. "How the hell could you have misdiagnosed me?", or 2: "Did you know Trigeminal Neuralgia sufferers do not normally touch their faces during an episode?". Hopefully, you have learned quickly you may have CH. You may also find there are a lot of similar facial pains other than CH. Same symptoms, different triggers and other varying traits. Only you and your Doctor can diagnose yourself.

Title: Re: Do I have clusters?
Post by chewy on Apr 3^rd, 2007, 7:30pm

Quote:

Will certain things show up on a CT scan and brain scan?

You should hope not. Then again if nothing does then you are narrowing down to clusters so I guess the results will suck one way or the other.

CT scans are not to diagnose cluster but rather to rule out other causes.

What is a breathing test suppose to diagnoe or rule out? Never heard of that one for headaches.

Title: Re: Do I have clusters?
Post by TonyG1 on Apr 3^rd, 2007, 8:18pm

Breathing test.... is it a lung capacity thing or is it a sleep study to rule out sleep apnea ??

Title: Re: Do I have clusters?
Post by chewy on Apr 3^rd, 2007, 8:51pm

Thats what I was thinking but there is no mention of sleep.

Title: Re: Do I have clusters?
Post by Charlie on Apr 3^rd, 2007, 10:26pm

Sorry you have to deal with this horror but you've come to the right place if so.

One thing that does it for me is that with a cluster attack, you cannot sleep and sitting still ain't all that easy either.

Good luck on the testing and let us know how things work out.

Charlie

Title: Re: Do I have clusters?
Post by pieface_49 on Apr 4^th, 2007, 8:50pm

I went for sleep study about 8 years ago. I swear I never fell asleep. They said I was in REM 1 stage. Today the sleep studies may be different. Wires all over me tied to little boxes, weirdly lit lighting and just an overall weird situation. Sheat, I should have been drunk when I arrived. At least I would have passed out ;;D. Without any doubt, I have sleep apnea. A recent study suggested there are 60-70% of those with CH who have sleep apnea. The lung capacity test, FEV (Forced Expiratory Volume), shows my lung capacity to be well below normal. Ya, keep smoking Pie :( The above, coupled with poor circulation, makes me a prime candidate for CH. Right now I do not even have a diagnosis from a Doctor that I have CH. I even am not sure I have CH and it could possibly be Sphenopalatine Neuralgia or another of 2 facial pain disorders. I lean towards CH. It took 14 years to remember, but was diagnosed with CH back in 1993. A 9-10 year remission made me completely forget the diagnosis until CH was brought up by my insurance companies Health Coach. Today I remember the Doctors office, the color of the office, what it looked like and being puzzled as to what is CH? How easily the mind forgets, but how amazing it remembers when in desperation. So, to answer the question "Do I have clusters?", heck, I don't know :). Need a Neuro to tell me so once again :)

Title: Re: Do I have clusters?
Post by Jonny on Apr 4^th, 2007, 9:46pm

Please give me some kind of link to something that will back this BS up!

[url]
on 04/04/07 at 20:50:03, pieface_49 wrote:

A recent study suggested there are 60-70% of those with CH who have sleep apnea.

on 04/04/07 at 20:50:03, pieface_49 wrote:

I do not even have a diagnosis from a Doctor that I have CH. I even am not sure I have CH and it could possibly be Sphenopalatine Neuralgia or another of 2 facial pain disorders.

HUH?

Title: Re: Do I have clusters?
Post by Linda_Howell on Apr 4^th, 2007, 9:54pm

Pieface, you are so over the top with some of your comments and "facts" that I really fear that some newcomer here will take what you say and literally, and harm themselves.

PLEASE take the time to research what you say, take a moment before you post or say nothing at all. >:(

Jeeze....

Title: Re: Do I have clusters?
Post by E-Double on Apr 4^th, 2007, 9:55pm

here are some links regarding sleep apnea and CH

http://healthlink.mcw.edu/article/963337560.html

http://www.aafp.org/afp/20050215/717.html

http://www.blackwell-synergy.com/links/doi/10.1111/j.1526-4610.2004.446010.x/enhancedabs/?cookieSet=1

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=6713522&dopt=Abstract

The last one is by Kudrow

Title: Re: Do I have clusters?
Post by Jonny on Apr 4^th, 2007, 10:12pm

60-70% is BS in my opinion, ive had CH for 32-33 years and never had sleep probs.......besides CH ;;D

Im different, lucky me......LMMFAO ;;D

Title: Re: Do I have clusters?
Post by BrianJ on Apr 5^th, 2007, 1:22pm

From what I've read the problem with Sleep Apnea is you can go years not knowing you have it ,I'm not sure that it would be a factor in clusters if it was then would we not only get them of a night I get just as many during the day as I do of a night.

Apart from that as far as I know Sleep Apnea is not seasonal like clusters are for a lot of us that are episodic.

I may be wrong but I'm sure sleep apnea is a big problem in a lot of people that are over weight and considering over 50% of people in both the UK and USA are over weight I would not be shocked if sleep apnea
was high in any sleep study.

There are a lot of things in studies about the beast that most on here prove is BS it seems to me that everyone is different and our triggers are different sleep apnea may well be a trigger for some people but to take a few small studies with small amounts of sufferers as fact and to quote it in a post in my opinion is a little wrong and can only increase the worry for some new comers.

Just my opinions as a new comer

Brian

Title: Re: Do I have clusters?
Post by Yorky on Apr 5^th, 2007, 2:31pm

do you.....
i prey not my friend. good luck

Title: Re: Do I have clusters?
Post by pieface_49 on Apr 5^th, 2007, 7:45pm

http://www.talkaboutsleep.com/sleep-disorders/archives/Snoring_apnea_cluster.htm

http://www.respiratoryreviews.com/sep00/rr_sep00_clusterheadaches.html

http://www.headache-help.org/Articles/sleep-disorders.htm

The problem with sleep apnea is you probably do not know you have it unless someone you sleep with says you quit breathing during the night.

Oh ya, I won't be back if the "All Knowing, Almighty" think what I say is self defeating and injurious to others. Thank all of your for your help.

Here is a lot of information on a study.

http://www.sro.org/pdf/2929.pdf

Title: Re: Do I have clusters?
Post by ClusterChuck on Apr 5^th, 2007, 8:27pm

on 04/05/07 at 19:45:25, pieface_49 wrote:

Oh ya, I won't be back if the "All Knowing, Almighty" think what I say is self defeating and injurious to others.

If you knew what you were talking about, and weren't posting a lot of garbage, no one would have a problem with your posts.

Title: Re: Do I have clusters?
Post by pieface_49 on Apr 5^th, 2007, 10:16pm

I owe people an apology. I know many put blood, sweat and tears into helping others. Many put all they have into finding resolution for CH. My comment about "All knowing, Allmighty" was uncalled for and I am sorry I said it.

Please, please, please. If I have ever said anything injurious or harmful to anyone, please let me know what it was. I will discontinue writing on the forums if I have.

Title: Re: Do I have clusters?
Post by Linda_Howell on Apr 5^th, 2007, 10:21pm

Writing on the forums is what this place is all about.

POsting as fact....when it isn't, is harmful.

All of us at one time or another, were totally in the dark about these HA's. We knew nothing. Asking questions and researching is the way we learn and grow into informed people. Nothing wrong with asking questions.

Your apology is the sign of a guy with some class.

Title: Re: Do I have clusters?
Post by BrianJ on Apr 6^th, 2007, 6:55am

You have just shown your self as a gentleman well done I think the only concern anyone had was the added worry comments may make for new comers
i dont think what you was saying was wrong just worded wrong but we can all make them mistakes

I think we have hijacked this post enough we can now let it get back on topic now ;;D