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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> newcomer, newly diagnosed, with a question
        
(Message started by: AT on Aug 17^th, 2007, 1:41pm)

Title: newcomer, newly diagnosed, with a question
Post by AT on Aug 17^th, 2007, 1:41pm

My neurologist has diagnosed me with episodic CH - although we're not truly certain that's correct. My first episode was 3 years ago. I get puslating twinges or stabs on the right side of my head, with the sensation that my right eye is being punched out from the inside -- but, the pain only lasts for a minute or two. This goes on all day long (and night) - sometimes once an hour, sometimes every 10 minutes - for about 5 months (the last time, at least). It's responding to Verapamil and triptans.

But I'm confused, because I don't have 30-min long headaches. Does anyone else have anything like this? Is it truly a CH?

Title: Re: newcomer, newly diagnosed, with a question
Post by Bob_Johnson on Aug 17^th, 2007, 1:58pm

This is one of the problems of making the initial diagnosis--but it is not unusual for the early stages, when CH has first hit, to have unclear, changing, moving symptoms.

Once it finds a nice home site in you head, you will know!

While waiting, do some learning:

MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $59 at Amazon.Com. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")

HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.

==========
http://www.plainboard.com/ch/chtherapy.pdf

Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)

Title: Re: newcomer, newly diagnosed, with a question
Post by DWAL on Aug 17^th, 2007, 2:10pm

Thats how mine started last january just a couple of minutes at a time once or twice a day. it got worse and lasted longer over time, waking me in the night. the longest now 1 to 1.75 hours.
i can't give advise because i just got diagnosed this week, and never even heard of it till last week. i am not qualified and am a rookie. there are a lot of good people here that know there stuff and should give good advise. it is hard for me to get off this site now.
good luck
david

Title: Re: newcomer, newly diagnosed, with a question
Post by southwalessunshine on Aug 17^th, 2007, 6:45pm

The prob with CH is that it does what it damn well pleases! Just when you think you are settled with a cycle you are getting used to, it changes on you again. Until 6 weeks ago i had a cycle every 3 weeks for 5 days of shadows followed by 24- 48 hrs of the beast. But 6 weeks ago it decided to come visit everyday. It def sounds like CH as triptans are working and you have the cluster of pain followed by pain free followed by pain. The cluster part comes from the amount of seperate headaches in a period of time. Read all you can and things will slip into place. I found this site and read everything here and on OUCH and realised alot of stuff that was happening to me, i didn't even realise was related to CH.

Title: Re: newcomer, newly diagnosed, with a question
Post by Barry_T_Coles on Aug 17^th, 2007, 8:57pm

Welcome AT [smiley=wave.gif]

Title: Re: newcomer, newly diagnosed, with a question
Post by Rosybabe on Aug 17^th, 2007, 10:57pm

Welcome aboard AT!!

I call those "ice picks" but they hit me before and after a cycle. They are painful but nothing like the beast :(.

I really hope you only get ice picks and never never fully developed into clusters..

but if you do, you are not alone. We are here to make you company.

Read, read and get as much info as you can here and also in O.U.C.H..

Wishing you pain free days and nights!

Rosy.

Title: Re: newcomer, newly diagnosed, with a question
Post by kyitb on Aug 17^th, 2007, 11:07pm

Have you looked into trigeminal neuralgia. To my knowledge they are very similar. Except that they don't last nearly as long. They are often triggered by light touching as well. Different from CH in that aspect.

Title: Re: newcomer, newly diagnosed, with a question
Post by rolo65 on Aug 17^th, 2007, 11:19pm

on 08/17/07 at 13:41:46, AT wrote:

This sounds like the symptoms of CPH, the ice pick short attacks? Does your eye ever water, or you nose run on the affected side (like CH)? Do a search on CPH (chronic-paroxysmal-hemicrania).

http://www.emedicine.com/neuro/byname/chronic-paroxysmal-hemicrania.htm

PF wishes my friend!
Rolo

Title: Re: newcomer, newly diagnosed, with a question
Post by Callico on Aug 22^nd, 2007, 2:56pm

Welcom aboard, but I think I'm with Rolo on this one. If the HA lasts for only a minute or so how do you have time for the triptans to work? Either I misunderstood or I think your Dr may be wrong on this. Mind you, I am not a doc, nor do I play on on TV or radio, but CH normally lasts quite a bit longer than that. Please take the cluster quiz and see how you match up. Also, see the cluster traits right above the quiz. I hope for your sake it is CPH, and doesn't morph into CH. Either way, welcome. Pull up an oar and help us start rowing! ;;D

Jerry

Title: Re: newcomer, newly diagnosed, with a question
Post by LeLimey on Aug 22^nd, 2007, 3:17pm

I personally would say it doesn't sound much like Cluster Headaches although it does resemble aother TAC (Trigeminal Autonomic Cephalalgia)

Paroxysmal Hemicrania can be episodic or chronic. It is defined as the attacks lasting between 10-30 minutes, but can be as short as two minutes or as long as 45 minutes.

Attacks tend to occur more frequently than CH (five per day or more - and sometimes up to 40 per day)

PH responds almost 100% to a med called indomethacinwhich luckily starts to work quite quickly, if i isn't making a huge difference within 5-10 days then the likelihood of it being PH diminishes but as with everything, no med is 100% so it doesn't mean categorically that it wouldn't be.

It could also be Ice Picks or Idiopathic Stabbing Headache is another possibility as previously mentioned and this is also highly responsive to indomethacin. Its only an Nsaid so although its a prescription only drug its cheap which is a big plus!

As I said at the start, We're not a doctor but We ARE expert patients! We will help you all we can with suggestions for you to discuss with your doctor bt please do not try anything without talking to him. We don't know your medical history, he does and what works for one headache type can, quite literally, kill for another.

If your neuro isn't a headache specialist he won't be offended if you ask for a referral to another neuro who is. Neurology is a huge field and you deserve a considered diagnosis from an expert in your condition (Headache) With over 600 headache typs it becomes even more important to get accuracy as oft times symptoms cross over with other headache types and it delays your chance of being Pain Free.

Let us know how you get on an if there is anything else we can help with please, please come back and ask. we'll do our best to help and support!

Regards
Helen