Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> 2002 Posts >> Newbie saying gidday
        
(Message started by: Jude_aka_kiwidoc on Nov 15^th, 2002, 8:30am)

Title: Newbie saying gidday
Post by Jude_aka_kiwidoc on Nov 15^th, 2002, 8:30am

I only just found this site, and it is great to find a place where if I am asked "how are you" I can tell the truth!

I have a slightly odd version of CH. As well as a lot of classic symptoms I have some alteration in the sensation of my face whenever I have shadows - light touch and temperature changes really hurts. I have had the pains off and on for about 10 years. It started as an occasional thing but gradually got more frequent. For the last two years I have had shadows almost every day, and depending on the meds full attacks 2 days out of 3.

I have been on numerous medication trials. The best result so far has kept the pains down to Kip scale level 3 most days with the odd level 7 - 8 two or three times a week. The last trial has not been a success and I have had between 1 and 5 attacks every day for nearly 8 weeks, ranging from Kip 5 - 9.

I am a psychiatrist, and a folk singer/song writer on the side. I am also a roleplayer and an occasional writer.

A few years ago I finally found a job I loved, that was only 9 to 5 (us medics usually have much more unsociable hours) - working as a psychiatrist with dangerous patients. I also started to get serious with my folk singing. CH ruined all that. I have lost my job and most days singing hurts. If I have shadows it triggers a full attack.

I am pretty much housebound as I can't drive and wind on my face hurts. I have built up a network of friends online. To keep me active and constructive I have got into graphics and a bit of web page design - building my personal site, and a large Dungeons and Dragons site as well.

Well ... thats me. A long spiel I know, but then again I always was a talkative biddy :P

Title: Re: Newbie saying gidday
Post by Mark C on Nov 15^th, 2002, 10:02am

http://www.gifs.net/animate/airpla~1.gif
Welcome Doc,
We need a good Shrink!
Sorry about the brain bombs but glad you are here. Keep us posted as how you are.
See ya,
Mark

Title: Re: Newbie saying gidday
Post by Bob P on Nov 15^th, 2002, 10:24am

Hi doc.

Just a thought for you. Have you looked into trigeminal neuralgia? Sharp pains that can be triggered by touch or wind on the face. Some of what you describe sounds like it may fall into that catagory.

Title: Re: Newbie saying gidday
Post by Tom on Nov 15^th, 2002, 2:39pm

Hi colleague Jude,

even as a p s y c h i a t r i s t you should be able to describe your pain attacks and your so far treatments in a better way...!

Thomas, MD, too.

Title: Re: Newbie saying gidday
Post by Jude_aka_kiwidoc on Nov 15^th, 2002, 4:20pm

Tom I deliberately chose to use lay terms to describe my attacks. If I said I have parasthaesia that affects all branches of the left trigeminal nerve I don't think everyone would understand what it meant. I also didnt want to give a list of all the treatements I have had - as I though that was what the treatements forum was for.

I am under the care of a supraregional center of excellence in neurology and pain. I have been seen by both a highly respected neurologist and an internationally respected pain specialist. the official diagnosis is "Continuous Cluster Headaches with some aspects of Trigeminal Nueralgia." An MRI ruled out Atypical Trigeminal Neuralgia.

My treatement so far consists of betablockers, carbamazepine, valproate, phenytoin, lamotrigine, verapamil, gabapentin, amitryptilline, dothiepin, among others alone and in various combinations. As I have had a slight bleed from a peptic ulcer in the past NSAIDs are not an option.

I hope this satisfies you that even a psychiatrist with only 9 years of general medical training and 9 years of specialist training and experience knows a tiny bit about general medicine, and can desribe her own symptpoms.

I find it a bit odd that the response to my first ever post was to criticise the lack of detail in my history - even though it was considerably longer than any other "newbie" posts I have read - and to insult the chosen career that I miss very much. Maybe it takes a psychiatrist to see how unwelcoming this is.

Title: Re: Newbie saying gidday
Post by echo on Nov 15^th, 2002, 4:43pm

Welcome to the group Jude.
It always amazes me what a mutant this CH beast is. No rhyme or reason the majority of the time. What works for some have no impact for others.
If you've been lurking for awhile, and your response indicates so, you're probably ready to throw a net over some of us before we flame out. ;D

Title: Re: Newbie saying gidday
Post by jonny on Nov 15^th, 2002, 5:01pm

Welcome Jude,

If you have lurked, then you know we ask questions of newbies if they do not provide enough info on meds and such.

I have no idea about this Doc vs Doc crap, but welcome aboard.......we can always use another Doc.

Sorry you needed to find us.

..............................jonny

Title: Re: Newbie saying gidday
Post by suzy617 on Nov 15^th, 2002, 5:02pm

Welcome to the board Jude! Now, now Dr. Tom, be nice to the newbie. ;)

Title: Re: Newbie saying gidday
Post by domm on Nov 15^th, 2002, 6:00pm

Jude - welcome to the board. We're seeing more and more Aussies here. You folks are going to have to start up an OUCH chapter down there.
Glad you came and don't worry about big words. We know lots of them too ;D
Hang tough
domm

Title: Re: Newbie saying gidday
Post by Slammy on Nov 15^th, 2002, 6:02pm

on 11/15/02 at 18:00:15, domm wrote:

Jude - welcome to the board. We're seeing more and more Aussies here. You folks are going to have to start up an OUCH chapter down there.

She's a Kiwi ( New Zealander) you Dolt! ;D

Slammy 8)

Title: Re: Newbie saying gidday
Post by Tom on Nov 15^th, 2002, 6:19pm

Hi Jude,

't was teasing only, really, as I'm coming from the surgical side - we like to tease psyciatrists, you know - no bad intentions involved !

Wish you a painfree time ! Thomas

P.S. Anyhow, your list of meds is somehow irritating...poor you.

Title: Re: Newbie saying gidday
Post by Charlie on Nov 15^th, 2002, 8:35pm

Welcome aboard. We seem to thrive on testing newcomers. I think it's because on our old board, we had too many cranks and snake oil salesmen. It got so bad, DJ had to go to this format.

I just wanted to welcome you and hope you'll stick around and contribute. Are you from NZ? If so, there have been several. By the way, I really like the Kiwi. 8)

Charlie

Title: Re: Newbie saying gidday
Post by Ted on Nov 15^th, 2002, 8:38pm

on 11/15/02 at 08:30:42, Jude_aka_kiwidoc wrote:

...I am a psychiatrist, and a folk singer/song writer on the side.

It all sounds very good to me.

on 11/15/02 at 08:30:42, Jude_aka_kiwidoc wrote:

I am also a roleplayer...

Oh yeah? Ever dress up as a prep-school girl? Oooops. You mean D&D.

on 11/15/02 at 08:30:42, Jude_aka_kiwidoc wrote:

Well, actually, a lot of us have done a lot of research into CHs by reading the medical journals/studies/etc... and have had to familiarize ourselves with terms and anatomy. So, saying that wouldn't have been any more confusing. Then again, no need to speak mediconvolutionese if it's not needed. Good call.
Welcome to CH.com.

Title: Re: Newbie saying gidday
Post by Jabeen on Nov 15^th, 2002, 9:16pm

Hi! Just wanted to say hello and welcome. I would love to visit your neck of the woods someday-looks beautiful. I used to work in education and knew some great women (ex teachers and administrators) that started a video teaching business down there and have brought it to the states very successfully. I haven't been around too long-and I am PF most of the time, but I like reading the posts and hearing others stories. And there is a lot of great info- :) :) :)

Title: Re: Newbie saying gidday
Post by Jude_aka_kiwidoc on Nov 15^th, 2002, 9:46pm

Sorry I got so upset earlier - I had three days of pretty much constant pain and I was very tired and vulnerable. I was also feeling very sad as I really, really miss my job. Getting my post grad qualifications took 10 years of hard slog ... and its all gone to waste :(

I do have Chronic Cluster Headaches but as the neurologist said I also have something pretty weird as well (his terms :) ), and he admitted he didn't know what it was. Neuralgic type pains can do this - you can get odd presentations that dont really match the recognised syndromes completely. It probably means we still don't understand them enough to have a truly accurate classification system.

So I hope I am still allowed to be here even if I don't quite fit the bill 100%.

Title: Re: Newbie saying gidday
Post by firebrix on Nov 16^th, 2002, 12:40am

Hey Jude ;D
Welcome! :D
Don't take offence - its all in good fun really, well most of the time! And CHers are a well informed bunch of humans - they have probably read a lot of medical input in an effort to understand their mf of a condition. Its understandable that they should get a little irritated when medical professionals do that "make it easy for them" trip. Check the search out! Its pretty cool stuff.
More info there on CH than I found in a number of libraries B4 I bought a computer. In fact there's more info, help and support here than anywhere and they're a good family to have! Saved us several times!
I too was concerned at the meds you've been prescribed - have you ever tried sumatriptan injections? Known as Imigran in NZ and Imitrex in the USA. This aborts most headaches in ten minutes and if you are able to take it, it will not wreck your stomach, make you too sleepy, too hyped, or destroy your sex life. Just stops the headaches for at least two hours. There are some contraindications for those with heart complaints, but this substance has made life bearable and work possible for many. Check it out with your neuro.

Where in NZ are you? Your website suggests you are in the UK ???

Wishing you pain free days and nights (PFDAN - I wondered for a while who on earth P F Dan was!!)
You're gonna have some fun on this site, babe! SO much info!
Peace
firebrix

Title: Re: Newbie saying gidday
Post by Georgia on Nov 16^th, 2002, 2:19am

Jude - Welcome home. Sorry to hear that you are in pain. We all know how social interactions can be within a group of people who are suffering from the worst pain known to man. Then remove the tone of voice and facial expression...misunderstandings run rampant. It makes life here interesting, to say the least. ;D

Have you tried any of the triptans? There are several now available and have had great success as a ch abortive. And what of oxygen? That has helped many here as well....links to the left will give you more info on both abortives and preventatives.

I am really sorry to hear that you are housebound. I would think that there must be some job out there for a psychiatrist completely online....I know there are websites that have MD's that you can write to for medical advice for a fee....maybe there is something like that for psychiatry? You wouldn't have to leave the house, could return to a profession you love, and could respond when you weren't in an attack. Worth looking into, anyway.

You have entered a realm of exploration, information, and support. Stay a while....read...learn...share.

Peace and love,
Georgia

Title: Re: Newbie saying gidday
Post by pimmony on Nov 16^th, 2002, 2:48am

Do you play EQ? )

Title: Re: Newbie saying gidday
Post by Jude_aka_kiwidoc on Nov 16^th, 2002, 3:02am

The medication list is what I could remember. All the migraine type treatments and the betablockers have been tried, but I can't remember the exact names. Gabapentin does that to you. The list may seem long but I have had full fledged attacks at least once a week for nearly 5 years with no gaps between clusters, so I have a lot of time to try all sorts out. My neurologist tells me what is going on and respects me as a colleague and we do talk about side effects and success rates in the research so I am not that worried about the medicine. At least the really, really bad so I want to die pain is kept at bay, and that is worth a great deal.

I have lived in the UK since 1990. I don't play EQ - I used to be a Rune Quester but now it's good old D&D.

Title: Re: Newbie saying gidday
Post by pjbgravely on Nov 16^th, 2002, 9:12am

Doc,
Don't be put off by us, You actually recieved a warm welcome. DRK will probably give a special one soon.

Georgia,
Where did the peace and love come from?

PJB

Title: Re: Newbie saying gidday
Post by domm on Nov 16^th, 2002, 9:55am

(DOH !!) ;D Slammy doesn't miss too many opportunities. ;D

Jude - hope I didn't offend.
My son works for Wizards of the Coast. I gave him plenty of crap during his school years for playing that stuff throughout all hours of the weekend, then going to school Monday all bleary eyed. The little SOB then goes and makes a career out of it. Go figger
Glad you're here. "stick in an oar and start rowing"
domm

Title: Re: Newbie saying gidday
Post by Drk^Angel on Nov 19^th, 2002, 3:44pm

Welcome to the board! Sorry that the beast is dippin' your cranium into a fiery pit, and roasting it to a crisp. Good luck!

PFDAN.................................. Drk^Angel

Title: Re: Newbie saying gidday
Post by cerebus on Nov 19^th, 2002, 8:13pm

dammit but I gotta do it...

HEY.....Jude!

I personally am impressed....
Quite a list of accomplishments you have there, but, I must say being a singer/songwiter why not focus more on the music than the vocals(hurts less) and music is one thing the world can't have enough of. D&D Gotta love that, I used to play but have since lost my way, creativity is NEVER a waste of time.
Sorry as well that you have to endure the pain but we are here for you just the same.
And although you are not currently practicing your proffession you will get enough practice analyzing some of us here, garanteed. At least you won't be bored :)

Captain R.D. Brown