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(Message started by: chloe1010 on Oct 17^th, 2005, 3:52pm)

Title: new here
Post by chloe1010 on Oct 17^th, 2005, 3:52pm

hey im chloe and im 17 years old, i first started getting headaches when i was about when i just turned 16 and after going to the doctors serveral times in a matter of weeks they said it was likely to be migraines however many of my symptoms are not linked to miagranes (although others arent linked with cluster headaches) for example im never sick often bang my head against walls and will pace up and down a room i have found that doctors have been no help to me and i often feel that they think im just some little school girl who cant cope with just a normal headache, i also feel this opinion with my school friends and i feel very embarressed to be screaming in pain and crying all the time for what they think is just a headache, they have also meant that i have become a very stressed person and this is something else my friends have picked up on ne1 have ne tips for dealing with social problems caused by clusterheadaches

Title: Re: new here
Post by kimmiedawn81 on Oct 17^th, 2005, 3:58pm

Well Chloe, it's nice to meet you. I'm sorry you're dealing with these headaches. I normally don't get clusters in social situations, I've had a few at work and if I catch it in time I take some meds, but a cold soda, put it on my head and go into an office and scream or cry if need be. Other than that, that's about all of the advice I can give, but I'm sure others will be along shortly to give you more advice.

Title: Re: new here
Post by LeLimey on Oct 17^th, 2005, 4:37pm

Hi Chloe Its nice to meet you I'm just so sorry it is here :-/
Anyway, lets see what we can do to help you. First of all there are many comditions that are similar to CH but are often misdiagnosed because they are even rarer. We need to get you a proper diagnosis. I hope you don't mind me asking you a few questions here.

How long do your hits last?
How many do you get a day?
How long does your cycle last?
What happens during a hit for you, what symptoms do you have?
What times of day do you get hit or is it unpredictable?

I'm sorry if I sem dead nosey but I want to help! Have you sen a neurologist? What meds are you taking or have you tried? If you can give us this info we can do alot to help you and suggest things for you to discuss with your doctor.

In the meantime have a look at OUCH UK,

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

its set up specifically for UK sufferers and has detailed info on the meds available to us etc. There are other sufferers in your same age group who it might be nice for you to chat to as well. You have to be a member to access the members board but there is a support board you can use as a non member.

There is also a helpline if either you or your parents want to call, its an answerphone so call and leave your name and number and someone will call you back. Its manned by volunteers who are sufferers and they will know exactly what you are going through. 0161 2721702 .. its probably very tough on your parents seeing you go through this and I can really sympathise as I have a child with clusters as well as suffering them myself. Tell your mum and dad that they can get help and support here and at OUCH UK too.

There is also a GP info page which you might want to point your doctors at!

http://gpinfo.ouchuk.org/

Hopefully you can answer those questions asap and we'll see what we can get done to help you and get you sorted asap. At your age you should be out having fun not facing this and I promise you I will do everything I can to help you get sorted out okay?
Looking forward to hearing from you
love
Helen

Title: Re: new here
Post by lionsound on Oct 18^th, 2005, 12:35pm

Hi Chloe,
We are not doctors here, but we can certainly help guide you to infromation that might be helpful.

If you can try to answer some of Helen's questions so we can help a little better. You do need to see a neurologist, even if it's not your favorite thing, for proper diagnosis and treatment. If you and your parents are informed about what's going on that will help the care you get.

I had HA's (clusters and migraines) since I was a kid and it is hard when your friends don't get it. You can try to explain, but you need to take care of you first.

Sometimes I find ice on my head and neck very helpful and I carry disposable ice packs in my small bag. They make heat ones too if you prefer that. Sometimes walking in cool air helps or running my head under cold water. If I'm home I might alternate between a cool and warm shower, which ever feels best. Or breathing steam from a basin with a towel over my head.

Please be well and Pain free,
lionsound

Title: Re: new here
Post by chloe1010 on Oct 18^th, 2005, 2:03pm

hey thanx for all ya welcomes
How long do your hits last? vary between 1hr and 2
How many do you get a day? 3 or 4
How long does your cycle last? varies but usually 5 weeks
What happens during a hit for you, what symptoms do you have? slurred speech and poor hand-eye cordation drooping of the eyelid often describe it as just a whole side of my face will ache
What times of day do you get hit or is it unpredictable? unpredictable although not usually first thing in the morning or around 4

Title: Re: new here
Post by LeLimey on Oct 18^th, 2005, 2:06pm

Hi Chloe, do you have any meds at the moment? If so what are they and are thry helping at all?

Title: Re: new here
Post by chloe1010 on Oct 18^th, 2005, 2:09pm

well like i sed doctors havent been very helpful to me so i tend to just take as much painkillers as i can put a hothingyerbottle on my head and just cry an awful lot lol but i was put on beta blockers for a while which did help but they took me off them

Title: Re: new here
Post by LeLimey on Oct 18^th, 2005, 2:21pm

Right, you've got nothing then (some doctors want shooting and yours is one of them >:( )
Tomorrow you need to go to the doctor, with your mum as back up if necessary and demand a referral to a headache specialist neurologist. If you don't have one near you then you want a referral outside your area because you NEED to see a neuro that specialises in headaches and not Parkinsons or something else useless for you!
In the meantime take this url to your doctor http://gpinfo.ouchuk.org/ and tell him to look up cd oxygen under the treatments. I cannot tell you how fantastic breathing high flow rate o2 is at aborting these headaches! Its my lifesaver and I can abort in 5-7 minutes. You will need to get a non rebreather mask as well which for some silly reason don't come on the nhs. You can buy one through Boots though although they might have to order it in (Or any chemist - its the mask with a resevoir bag)
Tell your doctor (you don't know how much I want to insert a rude word there!) to look in his BNF (British National Formulary AKA Doctors bible!) under cluster headaches. He will see the only licensed treatment for CH is imigran injections. Not the pills.. they are rubbish for ch, not the nasal sprays, they don't work fast enough.. THE INJECTIONS! :) He might gripe on grounds of cost (flippin expensive!) but thats tough, he has no choice and if he won't prescribe tell him you will go to the PCT who will have to over ride him. O2 isn't currently licensed but trials are nearing completion at the Institute of Neurology and the results are impressive (I know that from my own experience though!)
If you have any other questions please ask.. we WILL help, I don't want you to go through another day in this pain.
Oh and check your IM's at the top of the board next to where it says cluster headaches!

Let us know how you are getting on okay?
love
Helen

Title: Re: new here
Post by KMT on Oct 22^nd, 2005, 4:47pm

Chloe

Welcome to the sight Sorry you suffer like all of us. Take what Helen advises and do what you need to get the appropriate meds. Print out the information on the Left to the Doctor and demand what you need. 9x's out of 10 we have all had to educate our doctors.

PF wishes to you Kim

Title: Re: new here
Post by BMoneeTheMoneeMan on Oct 23^rd, 2005, 1:02pm

Hi Chloe, and welcome.
Sorry you are getting hit. Like everyone said, you have to be agressive in getting a doctor to correctly diagnose you instead of just giving you an antibiotic or something.
The meds that LeLimey talked about for CH are good, popular meds. If you do have cluster headaches, its NOT a good idea to pop pain pills. Whether prescription or OTC pills like excedrin, pain pills tend to have no effect at all and actually tend to make it worse. In my case, a lot worse.
GL with the doc. Let us know how it goes
PF wishes
BMonee

Title: Re: new here
Post by gfdfirefighter on Oct 25^th, 2005, 6:30pm

Hi Chole
I am sorry to hear that these headaches have hit you a such a young age. My wish for you is that they go away and never return. I have been dealing with them every 5 years for the past 15 my episodes started backup this last august and continue i am waiting for the day when I say goodbye to them for another five years.

My first episode the doctor i went to see thought i was strokeing out after he finally realixed i wasn't he sent me off to a nero that proscibed me Zilocaine which was fine as long as i used it before my sinus plugged up.

my second bought five years later I was put on lithium which if possible stay away from the the side affects are far worse than the benifits i felt like a walking zombie.

The third bout I was put on O2 which works well as long as you use it before your headache goes full blown.

I am going in to see a nero on monday and will let you know what type of theropy I get this time.

Just remeber they will go away

Smiley

Title: Re: new here
Post by unsolved1 on Oct 25^th, 2005, 10:05pm

Welcome Chloe ! :) So young to have to eal with this sh*t. Sorry you're suffering.

Clusters can definately cause social problems. I've practically become a hermit because I don't like to be away from home when I get hit. You just gotta learn to deal with it until you quit having them. I hope you find something that helps soon !

Pain free wishes :)

UNsolved