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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> hi there , im a " newbie"
        
(Message started by: angeldust on Oct 21^st, 2006, 5:01am)

Title: hi there , im a " newbie"
Post by angeldust on Oct 21^st, 2006, 5:01am

hi there ,
my name is ami . im 24 yrs old and im a house wife....
up until yesterday i thought i had a brain tumour :( (everyone else thought i had lost the plot !!!)
been having major pains in my head and eye that would leave me paralised with little or no vision in my right eye .... usually occuring at night and lasting anything from 40mins to 4 hrs and they would leave me exhausted.......
anyway , went to the docs yesterday and she said she thought they were cluster headaches .
she gave me some leaflets and a prescription for a tablet called INDOMETACIN....
but she said that there was no cure and had to try and find out all information i needed from internet sites.... i must admit i felt worse coming out knowing there was no cure than when i went in ........
so here i am!!!!
in your capable hand (oh lord help me)
:D
kind regards
ami x x x

Title: Re: hi there , im a " newbie"
Post by LeLimey on Oct 21^st, 2006, 7:04am

Hi Ami,
I'm just the other side of Nottingham so I'm probably not too far from you.
Lets get you sorted okay?!
Indo is probably not going to help you much, its very good for another headache of the same category called Paroxysmal Hemicrania but its not generally considered to be of any use for CH as we call Cluster Headaches.
You need to go back to your doc and ask for this little list of goodies!

1. An appointment with a HEADACHE SPECIALIST NEURO. I cannot stress that enough. Seeing a neuro who specialises in MS is going to be about as much use to you as a chocolate fireguard! If there isn't one in your area ask to be referred to Professor Goadsby at the Institute of Neurology in London with the letter stating you have CH or suspected CH (very important point as waiting lists vary for different HA types) If you would prefer to see one in the Midlands I can recommend Dr Evangelou at Queens Medical Centre in Nottingham as that is who I see myself. You will need an MRI to rule out anything else as with this sort of pain doctors cannot be complacent.

2. Imigran injections. Not nasal sprays. Not pills. If your doc looks in their BNF they will see this is currently the only licensed treatment for CH and may not be refused on grounds of cost. (HUGELY expensive!) The nasal sprays and pills do not work fast enough for CH and therefore should not be considered. Its an auto injector so don't worry and its only subcutaneous so it truly is "just a little prick!"

3. Oxygen. Your doctor will need to complete a HOOF form (Home Oxygen Order Form) and must make sure to tick the boxes for ambulatory oxygen, state a flow rate of 15 itres per minute and state it is for CH. Your supplier will be Air Products and they will provide masks as well. They are very good, I was there at their head office on Wednesday educating them and prividing info to all their call centre staff about CH.

Oxygen is about the best treatment I can recommend from my own experience. Its the only abortive I use and I can abort a hit in 5-7 minutes. Read the threads on tips for how to use it to the best advantage.

If I can be of any more help or if you'd like to chat let me know! I'll happily either give you my number or call you (we can swap #'s via pm's!)

We'll get you through this don't worry. It isn't curable.. yet! It IS treatable though and we can help you have your quality of life back and to fight this I promise.

Helen

Title: Re: hi there , im a " newbie"
Post by RichardN on Oct 21^st, 2006, 8:16am

Hi Ami, and Welcome to Clusterville

. . .and make sure you follow up on Helen's suggestions . . . as soon as possible. If it is CH, it won't get better (unless you're episodic and it leaves on its own).

If you haven't already, please take the "cluster quiz" (4th link down on the left), and let us know how you do.

Really push for the 02 . . . works for 60-70% of us to abort. I cannot take triptans (Imagran/Imitrex) due to some arterie blockage and high cholesterol (very dangerous for me), so 02 is my only abortive. Like Helen, I can usually kill the beast in minutes if used (AND THIS IS KEY) early-on in the attack.

Read the "water X 3" link on the left. I am convinced this has helped me and others reduce the frequency and intensity of attacks . . . it takes a LOT of water . . . and you'll be making frequent trips to relieve yourself . . . . but you can't beat the price and water therapy may be of use to you.

You'll want to read some of the info about melatonin (helps many reduce intensity/frequency of night hits), which is readily available and requires no prescription.

Also, you might want to investigate the kudzu info/survey on the "Medications,Treatments,Therapies" board. Many have reported success . . . haven't tried it yet myself . . . but intend to.

There is SO much more. You have much to read and many questions to ask . . . .fire away . . . there's not a question that hasn't been asked before, and the answers you will receive are from folks who truly understand your pain.

Welcome Home

Be Safe, PFDANs

Richard

Title: Re: hi there , im a " newbie"
Post by roy21302 on Oct 21^st, 2006, 12:24pm

Hi Ami,
Sorry you have had to find this site, but welcome, don't be scared by this, it is awful, but now you have found us you'll be alright. You have had contact with are angel in disguise Helen, what she does not know is not worth knowing. Be guided by her and you will be fine. Ask any question you want, read everything on here you can, one of us will answer you, don't panic or dispair. O2 is cheap effective Cheers Roy ;)

Title: Re: hi there , im a " newbie"
Post by chopmyheadoff on Oct 23^rd, 2006, 7:38am

Hi Ami - dont despair - there IS help out there !!

i suffered for years before putting my foot down and DEMANDING the docs do something.

This is the point i got referred to a neurologist and my "incurable" condition that my doctor was so blazee about , sudenly became "the most painful condition known to medical science".

just hearing the neuro say that made me so happy, finally, someone who is taking me seriously !!

anyway, i am now on 480mg verapamil a day , which keeps 99% of the b@stards away - and i have an autoinjector of imigran for when one sneaks through !!

the single most important thing you need to do is DEMAND a referal to a neurologist who specialises in headache.

good luck girl !! we are all here if you need advice or a shoulder to cry on [smiley=hug.gif]

Title: Re: hi there , im a " newbie"
Post by tarheel03 on Oct 23^rd, 2006, 11:42am

Hello Ami,

Welcome but am sad that you had to find us here! I am also a 24-year-old female with CH. The others have already posted extremely helpful tips for you - and I will second/third/or fourth the use of oxygen! Usually, they will abort mine in 10 minutes or less, depending on the severity of the CH. I often get mine during the night as well, as soon as I hit REM sleep. Not a very pleasant way to wake up! But having the O2 right by my bed allows me to drift off to sleep right away after putting my mask back up.

Anyway, I am a newbie myself and have been floored by this site since I found it a few weeks ago - everyone is so willing and able to help and support one another. Good luck fighting "the beast" - being armed with this website will certainly make the fight a more informed one! If you have any questions about the O2, let us know.

PF wishes,
Meg

Title: Re: hi there , im a " newbie"
Post by Richr8 on Oct 23^rd, 2006, 11:57am

Hi Ami and welcome!

Lucky for you, you have stumbled on to the best place to be for anyone with CH. Many of us suffered for years before ever finding this place. It looks like you have all of the good advice to follow and it's good to hear that your doc is open minded re: treatments etc. Take what you learn here back to him/her and get what you need. As stated several tomes, Oxygen should be at the top of that list. Hope you get some pf time soon.

Title: Re: hi there , im a " newbie"
Post by BB on Oct 23^rd, 2006, 3:39pm

Ditto what everyone has said.

Just want to welcome you to the Board :)

And painfree wishes to you

Annette