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(Message started by: Trapp on Dec 30^th, 2005, 11:01am)

Title: New
Post by Trapp on Dec 30^th, 2005, 11:01am

Hi, my name is Sheena; I am 21 years old and was just diagnosed with cluster headaches about three weeks ago. I don’t know if I am episodic or chronic. All I know is that I have been having this crazy headache since August and they have been increasingly getting worse. I get them on my right side and they last about 30 minutes. I had 5 last week, but so far none this week. I normally have pressure and/or slight pain behind my eye, which is no big deal, but really quite annoying. My doctor put me on Indomethacin and Verelan as of Wednesday.
I’ve done a lot of reading, mostly on this site; all your experiences have helped a lot. Thanks. Pain is no big deal; I’ve lived in pain most of my life, but this…this is just insane, it is not like anything else I have ever felt. I know most of you (probably all) have been suffering A LOT longer than I have, but I feel like I have just finally crawled myself out of one hole, just to fall into a deeper one. I hope ya’ll don’t think I’m a big chicken, I’m really not, I’m just really frustrated at the moment. I really don’t know why I joined this site; I guess I just wanted to talk to some people that are experiencing the same thing I am. I have a ton of questions; the main one being is there any relief?

Title: Re: New
Post by MJ on Dec 30^th, 2005, 11:32am

Sheena
Welcome, for clusters you have come to the right place.

Many people have found relief to some extent. But we all know the best releif is when they go away for a bit.

Questions - fire away. I cant help much on meds but a lot of knowledge will show up soon.

Title: Re: New
Post by burnt-toast on Dec 30^th, 2005, 11:43am

First, Welcome to the board.

Second, relief? yes and no - CH can be quite fickle in how it responds to meds. which are divided into two basic categories. Abortives and Preventatives.

Abortives (O2 (Oxygen), Imitrex, etc., etc., etc.), help treat the immediate symptoms of attacks.

Preventatives (Lithium, Verapamil, etc., etc., etc.), are used to establish and maintain therapudic leves of these drugs in one's system to hopefully ward off attacks.

Everyone's response to treatments seems to be different. Please don't overlook the Alternative treatments that you will find here either - Many seem to have had good results from using them.

Research, research, research and maintain an accurate headache journal. This will help you communicate/work more effectively with your Neurologist and provide you with a means of tracking the effectiveness of meds. and the most effective dosage levels.

It will take some work but you can find relief or at least improve your condition if you work at it and develop a collaborative relationship with your Neurologist.

Tom

Title: Re: New
Post by Gator on Dec 30^th, 2005, 12:15pm

Welcome to the website. It is normal to seek out understanding and believe me, we understand. Even though you may never wish this malady on your worst enemy, it is comforting to find someone else who suffers from it.

As you have no doubt discovered, the links to the left have tons of good info in them. There is more info on the OUCH website (http://www.ouch-us.org). Read everything you can, take the Cluster Quiz (http://www.clusterheadaches.com/quiz.html) and print stuff out that seems applicable. Unfortunately, because of the rarity of the disorder, you may end up teaching whatever doctor about CH.

Here is a link to read and print and take to your doctor. It describes preventative, transitional, abortive and surgical treatments for CH.

http://www.brightok.net/~mnjday/chtherapy.pdf

Here is a link to some non-prescription alternatives different people have used to help with the pain:

http://www.ouch-us.org/chgeneral/nonmed.htm

If you are currently taking medications, I would suggest you talk with your doctor before taking any of the nutritional supplements. At the very least check for interactions at a website such as:

http://www.drugdigest.org/DD/Home/AllAboutDrugs

Nutritional supplements can interact with prescription meds just the same as some prescription meds interact with each other. Better safe than sorry where your health is concerned.

If you need assistance is getting your meds, the Partnership for Prescription Assistance website has links to hundreds of programs to help people get the meds they need. Check them out here:

https://www.pparx.org/Intro.php

Oxygen is an excellent abortive. Works for most people when used properly. Defintely try this. As well as it works, I have a hard time understanding why more doctors do not prescribe it. It must be used correctly to work, though. Get it prescribed for up to 15 lpm through a non-rebreathing mask for no more than 20 minutes. If your doc won't prescribe it for you, you might try welder's O2. It's the same pure oxygen used by medical suppliers. Many people here use it and would be more than happy to help you set it up. Here are some links that tell about using O2:

http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm

http://www.headaches.org/consumer/topicsheets/oxygen.html

http://www.chhelp.org/mhni.html

Here is a link to a letter that may help explain things to your friends, family and co-workers.

http://www.ouch-us.org/chgeneral/colleagueletter.htm

Again, welcome to CH.com. There's no better place in the world for info and support of cluster headaches.

Gator

Title: Re: New
Post by Trapp on Dec 30^th, 2005, 6:59pm

Wow! Thanks for the tips. My doctor did perscribe oxygen, however, I ran into some problems with insurance.

I printed off a bunch of information from the links, so now I'm going to go read. Thanks.

Title: Re: New
Post by Guiseppi on Dec 30^th, 2005, 8:29pm

Welcome and sorry you had to find us but thank goodness you did. I began the headache journey at just about your age....25 years ago! What you'll come to learn is what Gator said in his post, get ready to educate your doctor. Pay attention to details, the oxygen only works if used right at the start, and used correctly. Most of the preventatives take several weeks to start helping so don't give up too fast on a treatment, I made that mistake a few times. I hope you find help on the board. Wishing you peace and a pain free new year.

Guiseppi

Title: Re: New
Post by Trapp on Dec 31^st, 2005, 2:06am

Don't most people get these "headaches" in groups? Because I don't, the most I have had is two in one day. I do have them two or three nights in a row (sometimes), but normally only one a night. The rest of the time they are totally random and come one at a time.

Title: Re: New
Post by Jasmyn on Dec 31^st, 2005, 2:24am

on 12/31/05 at 02:06:21, Trapp wrote:

Welcome Sheena, I am sorry that you suffer from CH but very glad that you found this site.

On your above question, they are called clusters because they appear one hit at a time, several times a day, month or year. They can occur straight after each other or a few hours or days apart.

Sing, dance and jump for joy if your hits are far and wide apart with only some nightly visits.

I do hope with all my heart that it will not increase in frequency.

Hang in there girl, we are always here for you. This is a great but quite nutty family that understands and supports each other.

PF wishes to you.

Title: Re: New
Post by Trapp on Dec 31^st, 2005, 2:51am

That stinks, I was hoping you would say that I didn't have CH...no such luck :(

Title: Re: New
Post by Gator on Dec 31^st, 2005, 2:52am

According the the IHS criteria,

http://216.25.100.131/ihscommon/guidelines/pdfs/ihc_II_main_no_print.pdf

(clusters start on page 44) the attacks come from once every other day to eight per day.

They are called clusters because the attacks typically happen in "clusters" of weeks/months followed by months/years of remission.

Title: Re: New
Post by Bob_Johnson on Dec 31^st, 2005, 7:09am

http://www.headachedrugs.com/pdf/HA2005.pdf
Read all the material, even sections on migraine. Material which important to cluster folks is sometimes also common to migraine.

Title: Re: New
Post by burnt-toast on Dec 31^st, 2005, 10:30am

on 12/31/05 at 02:06:21, Trapp wrote:

The cycle or grouping of CH attacks is variable in just about every individual. Frequency, timing, severity and seasonal regularities become more recognizable over time. You may be describing a pattern that you just don't recognize yet.

The Neurologist that finally diagnosed my condition was a CH sufferer - he understood the pain but his cycle was multiple attacks for three straight days around the same time each year followed by full remission until the next year. I was skeptical when he said my condition had a pattern but when I started tracking attacks a recognizable pattern became evident.

This is where an accurate headache journal will help. Don't rely on memory keep good records. A good journal will help in determining if the diagnosis you have received is correct. If you find you are logging symptoms that just don't fit with CH you can communicate/work with your doc. to obtain a more appropriate diagnosis/treatment.

Here are a few descriptive links - do some Google searches, some of what you find will be useless but there is a growing abount of good information being published on CH. Who knows maybe you'll get blessed by a better diagnosis than CH.

http://www.cnn.com/HEALTH/library/DS/00487.html (Report from the Mayo Clinic)

http://www.emedicine.com/NEURO/topic70.htm (Touches briefly on "Symptomatic clusterlike" symptoms that should be considered)

http://www.ohiohealth.com/healthreference/reference/3F01D91A-F0EA-4C61-8D6B266A80EA7586.htm?category=diseases (Touches on signs/symptoms/cycles)

Tom