Clusterheadaches.com Message Board


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

        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Hello...new newbie!
        
(Message started by: Dannii on Aug 14^th, 2005, 11:02am)

Title: Hello...new newbie!
Post by Dannii on Aug 14^th, 2005, 11:02am

hello...name is Danielle, i'm 30 and have been suffereing from ch for about 6 years now...i live in Warwick in the UK and am a cardiologist and surgeon....am happily married to my wonderful husband Michael...also a surgeon....but luckily for him no ch!

just want to say thanks in advance for this message board....it's difficult without anyone who has experienced this to talk to

Title: Re: Hello...new newbie!
Post by nani on Aug 14^th, 2005, 11:10am

Hi Danii, welcome home. I'm sorry you had to find us. This place is great. There's probably more CH info in this one place than you'll find anywhere else. Start reading, there's a lot to read. Oh, and, grab an oar... this boat needs all the rowers it can get. ;)
pain free wishes, nani

Title: Re: Hello...new newbie!
Post by LeLimey on Aug 14^th, 2005, 11:29am

Hi Dannii!
Welcome!
I don't know if you have discovered OUCH UK at all but they will be a big help to you

http://www.clusterheadaches.org.uk/home/index.cfm?address=../home/txt_welcome.cfm&added=Dec2001&code=AD

There is also a helpline which is brilliant. Talking to another clusterhead is amazing, there is nothing like it and no one will ever understand this pain the same. 0161 2721702 It is a answerphone, you leave your name and number and one of the volunteers (who are all sufferers themselves) will call you back)

Have you tried O2? I swear by it. It works brilliantly for me and its alot kinder than Imigran!

Oh and there is a GP Info page too if its of help!
http://gpinfo.ouchuk.org/

Let us know how you are getting on okay?
Best wishes
Helen

Title: Re: Hello...new newbie!
Post by Jasmyn on Aug 14^th, 2005, 12:14pm

Great place to find!

Like Nani said we're all in the same boat. We are here for each other and for the families of clusterheads. Someone will always be available as most are insomniacs or on diff time lines. You'll never feel alone with the BEAST again!

Welcome!

Title: Re: Hello...new newbie!
Post by unsolved1 on Aug 14^th, 2005, 7:27pm

Welcome to the message board Danii :)

There's alot to read!

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

Pain Free Wishes~
Unsolved

Title: Re: Hello...new newbie!
Post by Juan_Carlos on Aug 14^th, 2005, 7:44pm

Welcome aboard Danii !!!!

I´m new also, but my life changed with this forum!!!!!

Try O2 stop the pain quickly !!!!

PF wishes

Juan Carlos

Title: Re: Hello...new newbie!
Post by Smurf on Aug 15^th, 2005, 1:29pm

on 08/14/05 at 11:02:32, Dannii wrote:

Hi Danielle-
sorry you had to join us, but we all love the company, you know, misery and all that. It does feel better to "talk" to folks who are all rowing the same boat!!!
Welcome!
Smurf ;;D

Title: Re: Hello...new newbie!
Post by seasonalboomer on Aug 15^th, 2005, 1:43pm

Hey Danielle,

Welcome to the hypothalamus freak festival. Sorry to hear you have a reason to be here. You'll find the conversations, support and overall community here to be both informative and, at times, entertaining.

We don't have a lot of MD/Sufferers on the boards (at least not many that'll admit it). So, I'll forewarn, many folks go through quite a bit of frustration getting a proper diagnosis, and then receiving appropriate treatments from their doctors and being a forum, there is venting that occurs regarding the medical community and CH. Some well deserved, some just "peripheral damage".

That being said, I think you'll be amazed at the info available here and the level of depth that discussions sometimes get to on treatments and coping. Join in the fray.

Best regards,

Scott

Title: Re: Hello...new newbie!
Post by SusieWong on Aug 15^th, 2005, 2:21pm

Hi Danielle,

So sorry that you are suffering. I assume that you are an episodic sufferer? There is not much that I can add to the good advice given. Do take a look at the links that Helen (Le Limey) has given you. The medications in the UK have different names and the support that you will get on the members board and on the help line is second to none! You will find it wonderful to be able to 'chat' to people who truely understand what you are going through.

My husband, David, suffered for 24 years until, with the help of OUCH UK, he was prescribed effective medications. He no longer dreads the next cycle, now that he knows that he can control the attacks. (He's not exactly looking forward to it either!)

Wishing you pain free days and nights (PFDAN)

Suex

Title: Re: Hello...new newbie!
Post by burnt-toast on Aug 15^th, 2005, 4:27pm

Welcome Dannii, you've come to the right place for support but we have little medical hope to offer, mostly advise on what has worked for us and the standard discuss options with your doctor line.

Do us a favor and let some folks in the medical community know that we're not kidding when we say these nightmares are unberable.

God Bless,

Tom

Title: Re: Hello...new newbie!
Post by Sandy_C on Aug 15^th, 2005, 6:55pm

Welcome Danii. Sorry you are here, but glad you found us. There is a wealth of information on this board, and milleniums of experience with Ch. Welcome to the family.

Sandy

Title: Re: Hello...new newbie!
Post by Viking70 on Aug 15^th, 2005, 11:30pm

Dear Danielle,

Hello. I am also new to this website. I am a Famiy Medicine Resident in the states and also suffer from cluster headaches. You have obviously survived residency with CH. I was wondering if you have any tips on how you did it? I've been waking up with headaches nightly for the last two weeks. The night this last cluster started I was taking call from home and got paged on a patient who was crashing and had to actually call another doctor at the hospital to take care of things. My headache was so distracting I couldn't drive. Tomorrow I'm on call and in house and worried that I won't be able to help someone in need.

My one ace in the hole is that there is a ready supply of oxygen in the hospital. I'll have to start carrying around my own O2 mask I suppose...

-Erik

Title: Re: Hello...new newbie!
Post by RichardN on Aug 16^th, 2005, 11:05pm

Welcome to Clusterville

. . . .but sorry you had to find us.

For me, 02 as abortive . . . can abort an attack in minutes if used at onset of attack. I can't use triptans due to arterie blockage and high cholesterol, so 02 is my only abortive . . . wonderful!

Get as specific as you wish here, or just rant if you feel like it . . . . we're here to help each other.

Be Safe, PFDANs

Richard

Title: Re: Hello...new newbie!
Post by Dannii on Sep 2^nd, 2005, 12:07pm

thanks for all the welcome messages...yes...i am episodic...and use o2 for abortive...i also find the TENS pain reliever works almost aswell...although takes longer to work.

seasonalboomer....thanks for forewarning!!...i don't blame people though...and thankfully im in cardiology...nothing to do with neurology!!

viking70...i have struggled in the past with this problem...although i have an advantage with my husband Michael being my registrar...if i have a bad ch episode i can send him when paged!
i find 02 is a good abortive method, so can often take my emergencies...worst one is transplants...an 8 hour transplant aving bloody ch throughout!
if you are episodic, you could try talking to your hospital board, explaining the situation and seeing if something can be arranged with on call shifts being given to you when not having ch?? i'm assuming that your mentors/etc are aware of the ch that you suffer from? i know how you feel, and it is difficult, especially when you have your final exams/assessments etc...there isn't really anything specific you can do...just try talking to people around you...sorry i haven't got much advice!!

thanks...Dannii

Title: i am new to this site and need help
Post by andymiller27 on Sep 3^rd, 2005, 3:16pm

i am 27 years old. have sufferd for 10 years with ch

my atackes last a lot longer than the usual case from what i have read up on. i am comeing to the end of an atack which has gone on for 7 months and for the best part of that was sick (vomit) off every single one. and i have never a great deal of time before the next attac starts. i have tryed alot of medications in the last ten years from bet blocker to aquapuncher to many for me to remeber and i am coming close to my tether.
i have told my doc thay are ch and he and she had not herd of them i told him about oxigen but he has never tryed me on it,
but i was resantly in america and went to see a doc for some realy stong pain killer becouse i was sailing back across the atlantic so icould stay on my feeton my watches. but thay were very adictive so i am not takeing them any more thay did work thou and with in 5 min thay are could loreset that is what it said on the prescripsion but not on the bottle and i also tryed oxegen thet had some efct but not to good it relaxed me but did not get rid

Title: Re: Hello...new newbie!
Post by LeLimey on Sep 3^rd, 2005, 3:47pm

Hi Andy,
Its nice to meet you.
Welcome! Lorcet are also known as Vicodin and are highly addictive so please do be very careful with them, there are alot of people with huge problems caused by addiction to these so I'm glad you are wary!
You say you've tried o2 and it wasn't too much help.. did you have the right set up. O2 is a quirky little beast really, you have to have it right or its not a great deal of help. You need a high flow regulator that will go up to 15lpm and a non rebreather mask for best effect.
I don't know if you have discovered OUCH UK at all but they will be a big help to you

http://www.clusterheadaches.org.uk/home/index.cfm?address=../home/txt_welcome.cfm&added=Dec2001&code=AD

There is also a helpline which is brilliant. Talking to another clusterhead is amazing, there is nothing like it and no one will ever understand this pain the same. 0161 2721702 It is a answerphone, you leave your name and number and one of the volunteers (who are all sufferers themselves) will call you back)

Have you tried any of the triptans at all? Or any preventatives? It sounds, reading between the lines, like you haven't had alot of help to date but thats all going to change! Please tell us what you have tried so far so we can help further and have a look at OUCH UK, obviously there is a big difference between the two sites in that OUCH UK is geared towards sufferers in the UK and the med names etc are ones your GP will recognise. (Also legislation varies.. some drugs that are available to us are banned in the US and vice versa.. God knows why!) There is a support board on OUCH you can post on without being a member so you can get help and advice there from right away. Also the helpline is available to you as a non member so please use it.

Oh and there is a GP Info page too if its of help!
http://gpinfo.ouchuk.org/

Let us know how you are getting on okay?
Best wishes
Helen

Title: Re: Hello...new newbie!
Post by pubgirl on Sep 3^rd, 2005, 9:17pm

Welcome to all the new Brits! Hope to see you over at OUCH Uk as well!

I hate to cast thoughts of doubt here,especially as you are a surgeon Danielle but are you (Andy and Danielle) both certain of the Ch diagnosis?

I only ask because even experienced neuro's get it wrong here and both of you sound like you are describing VERY long attacks.

Dannii- did you mean you had one continuous attack that lasted the full 8 hours while you were doing transplant surgery?
I am also interested to know how long your TENS takes to clear your pain?

and Andi, you say yours are longer than normal, hwo long do they last can I ask?

Sorry to seem nosey but there are quite a few headache conditions which closely mimic Ch in symptoms and doctors often cannot differentiate between them and give the wrong treatments.

Wendy

Title: Re: Hello...new newbie!
Post by pubgirl on Sep 4^th, 2005, 8:35pm

Anyone out there, troglodyte or otherwise?

I mean no offence by asking questions, just conscious that for every Ch sufferer being correctly diagnosed there are many wrongly diagnosed by so-called "experts" when a simple treatment regime would solve their unilateral headache as it is a different one with some similarities.

I wish Ch on no-one and am glad of every misdiagnosed person who arrives here and gets the right treatment for the cephalalgia they DO have and am sad for but glad for every Ch sufferer who finds their way here also.

Wendy

Title: Re: Hello...new newbie!
Post by Sean_C on Sep 4^th, 2005, 9:14pm

on 09/02/05 at 12:07:11, Dannii wrote:

worst one is transplants...an 8 hour transplant aving bloody ch throughout!

Try excedrin extra strength, should make it a little easier to deal with.

Sean.............................

Title: Re: Hello...new newbie!
Post by BMoneeTheMoneeMan on Sep 5^th, 2005, 1:48am

Welcome Danni.
BMonee

Title: Re: Hello...new newbie!
Post by Barry_T_Coles on Sep 5^th, 2005, 3:29am

Hi Dannii

Welcome, you are among good people here and they know more about what we go through than a bucket full of books ( if that makes sense ?).

Yes the beast visits Oz when not causing havoc elsewhere.

I note that you get relief by using a TENS machine, I use one myselfe as do others here, I was using the TENS before I found this site and learned about oxygen.

There's a heap of info on this site and everyone is willing to help whenever.

Kind Regards
Barry

Title: Re: Hello...new newbie!
Post by Dannii on Sep 5^th, 2005, 1:37pm

pubgirl...sorry, having re-read my previous post, i can see how it read...no 8 hour Ch...but a few 15-30min Ch in the 8 hour period. It took a couple of years for the Ch to be diagnosed in the first place, only when i moved to warwick did i come across an experienced enough neuro to help.
I have been using a TENS machine for a few years now...and usually find that it is effective within 5-7 mins. My favourite abortive is still o2.