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Topic: Hello everyone, new to all this!! (Read 585 times) |
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Shazza
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Hello everyone, new to all this!!
« on: Aug 11th, 2006, 8:18pm » |
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Hello, I am so glad to have found such an informative and what seems to be a welcoming support group.
I found this site by looking for information on CH as I have just been diagnosed by my GP and am awaiting to see a neurologist, my GP was not very clued up on CH so I am doing my own research.
I have always suffered with headaches from teenage years, but the last two years I have suffered from what I now know is not just 'stress headaches' or 'migrane' but CH. It has been a nightmare, and yet I feel very let down by my GP.
My appointment at the neurologist is next month and I have been suffering for 4 weeks this year, (last year was nearly 3 months) and I am feeling very depressed now. I had a very bad attack last night and came close to smashing my head against the bedroom wall, scaring my partner half to death. I am scared my self. I have no idea what to expect anymore. I wake up with one every morning and go to bed in the evening with one. The pain is unbearable now and I'm losing hope.
I am sorry to sound so depressing but that is how i'm feeling at the moment.
My partner and children walk on egg shells around me because of my frustration, they shouldn't have to do that.
Finding this support group has given me a little hope, that i'm not on my own.
I have one question, as I'm new to all this and have no idea as to what will happen at the neurologist appointment, my doctor has prescribed me some Co-codomal for the pain which does nothing, is there a drug which i could ask my doctor to prescribe in the meantime?
Thank you for your time
Sharon x x
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LeLimey
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Re: Hello everyone, new to all this!!
« Reply #1 on: Aug 11th, 2006, 8:36pm » |
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Hi Sharon its nice to meet you.
Co Codamol.. you're the second person I've spoken to here today who's numpty of a doctor has prescribed that!
In an attack the blood vessels on the affected side of our head swell by up to 20 times their usual size which is why they are so excruciating. What we need are vaso constrictors which constrict the blood vessels and bring them back to normal.
Ordinary pain killers right up to and including morphine don't do this and as such are generally completely ineffective for CH.
GP's aren't generally clued up on Cluster Headaches, its a rare condition and your average doc spends about 5 hours in total learning about HA's in medical school.. not promising for diagnosing rarer types!
The first thing a neuro will do is book an MRI for you to rule out anything else. With pain this severe it should always be investigated thoroughly. Your doctor may well be reluctant to prescribe anything else without a confirmed diagnosis and he/she would be right as these are really powerful drugs, they constrict blood vessels around your entire body and as such could be dangerous if you have any heart problems.
Add into this the fact that triptans can be highly dangerous for some other HA types and you can see they aren't to be messed with.
Get your doctor to give you the number so that you can ring and ask for cancellations, you'll be seen quicker.
In the meantime, and over the weekend in particular you might want to try chugging a can of red bull or a cheapo equivalent at the first sign of pain, that can be really effective (caffeine is a vaso constrictor) ice packs help alot of us too.
I'm not far from you, I'm in Bingham which is about 35 minutes down the A52 from Derby. If you need someone to talk to send me a message and I'll gladly help, I know how long weekends can be when you're in pain and needing help
Take care
Helen
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Jonny
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Re: Hello everyone, new to all this!!
« Reply #2 on: Aug 11th, 2006, 8:46pm » |
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Welcome aboard, Sharon.
Sorry you had to find us.
Listen to Helen, shes our English Mum and she knows lots!
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Shazza
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Re: Hello everyone, new to all this!!
« Reply #3 on: Aug 11th, 2006, 8:49pm » |
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Hi Helen,
Thank you so much for your reply, you have no idea on how reading your reply has made me feel. Its such a relief finding someone that is clued up on this. The co-codamol does nothing but make me feel even less in control of myself than i already am. and it doesn't help the pain. I am quite nervous about seeing the neurologist, being in so much pain, making me think awful thoughts. I will try the red bull, i will try anything right now lol.
My doctor admitted that he didn't know alot about CH and he even looked it up when I told him my symptoms. I'm doing alot of research into it but I guess it will all fall into place when I speak to a neurologist.
Thank you again x x
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Shazza
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Re: Hello everyone, new to all this!!
« Reply #4 on: Aug 11th, 2006, 8:52pm » |
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Thank you for your warm welcome Jonny xx
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LeLimey
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Re: Hello everyone, new to all this!!
« Reply #5 on: Aug 11th, 2006, 9:17pm » |
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When I found this site the best thing was knowing I wasn't alone, knowing others knew what I was going through and just knowing I was understood.
The light is always on here and you have your back up support in place now too! 
We'll all get through this together. I've got a young family too, I know how tough it is. We won't let you down. 
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Jonny
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Re: Hello everyone, new to all this!!
« Reply #6 on: Aug 11th, 2006, 9:22pm » |
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on Aug 11th, 2006, 9:17pm, LeLimey wrote:| When I found this site the best thing was knowing I wasn't alone |
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Who are you trying to fool, the best thing you found here was my handsome ass 
Ok Sharon.....Helen lied about that, but you can trust her....LOL 
Welcome to the looney bin.....LOL
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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LeLimey
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Re: Hello everyone, new to all this!!
« Reply #7 on: Aug 11th, 2006, 9:28pm » |
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Jonny you said it was a mule not an ass 
Sheeesh, get your story straight man or I'll have to slap you about a bit (again!)
Shazz.. as the man himself says.. welcome to the nuthouse! King Nut has spoken!
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Shazza
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Re: Hello everyone, new to all this!!
« Reply #8 on: Aug 12th, 2006, 5:12am » |
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Helen and king nut sorry .....Jonny lol thank you both, reading that actually made me laugh even though it hurt to do so.
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Jasmyn
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Re: Hello everyone, new to all this!!
« Reply #9 on: Aug 12th, 2006, 5:34am » |
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Welcome Sharon.
See on the left side "headache links". Very good info to educate your doc a bit.
As Helen said, try to get an appointment with the Neuro earlier.
You hang in there Girl.
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Jazz
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Shazza
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Re: Hello everyone, new to all this!!
« Reply #10 on: Aug 12th, 2006, 7:21am » |
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Hi Jasmyn,
I went to my doctor two days ago and asked about being able to see the neurologist a.s.a.p but he fobbed me off saying it was now out of his hands. I could tell that he felt uncomfortable with my questions, it did not ease me at all. It made me feel like a freak of nature! lol
Thanks for your advice i will check out the link now
Sharon xx
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LeLimey
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Re: Hello everyone, new to all this!!
« Reply #11 on: Aug 12th, 2006, 7:30am » |
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How was last night for you Shaz? I was thinking about you and have a couple of other things that can help but won't hurt to suggest in the meantime.
A bag of frozen peas or corn wrapped in a tea towel is helpful to hold against your face, I have found ice on the back of the neck to be really good too. The Occipital Nerve is there and runs up over your head, its one they can inject a nerve block into so "freezing" it can help alot too.
Red bull (or el cheapo equivalent) is brilliant, I've had a lot of help from that. Strong coffee works well too but with both you have to drink them fast, thats the key. Get that caffeine in as fast as you can! Drinking red bull fast is no problem for me cos it tastes like shit unpleasant!
If you have air con in your car, sitting with your face next to the vent, with it on the coldest setting and on the highest fan speed can help too.
Helen
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Shazza
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Re: Hello everyone, new to all this!!
« Reply #12 on: Aug 12th, 2006, 7:35am » |
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Last night was not too bad Helen, woke a couple of times but managed to get back to sleep. It's waking up with the same pain over and over again that puts me off sleeping altogether. I am going to stock up on some red bull when I go shopping and my partner is diabetic so I know he'll keep off it lol. would never have thought of red bull or coffee. thanks for the tips x
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LeLimey
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Re: Hello everyone, new to all this!!
« Reply #13 on: Aug 12th, 2006, 8:29am » |
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Try sleeping propped up too.. I tend to fall off loads of pillows but I can sleep on the sofa and be more propped up there when I'm going through a bad week, it seems to help a lot of people somehow.
You do know I'm going to be making you ring that neurology department daily from Monday don't you?! LOL
If the pain get's too bad go to A&E, there's a twofold reason for that, one, they will be able to give you O2 at 15 litres per minute through a non rebreather mask which WILL help and two, it might help speed up your appt.
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Shazza
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Re: Hello everyone, new to all this!!
« Reply #14 on: Aug 12th, 2006, 11:07am » |
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I almost went to A&E, my bf was stressing for me to go as he could see how much pain i was in, however I am a very stubborn person. I hate relying on other people, dont know if it's the virgo in me but I am a control freak!! lol.
I doubt that my appointment will be brought forward, my doctor couldn't help me and I know that my voice will fall on deaf ears.
I start university in september and am stressing about that ontop of all this. I think I just need a good Night sleep lol
xx
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LeLimey
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Re: Hello everyone, new to all this!!
« Reply #15 on: Aug 12th, 2006, 11:17am » |
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Im a Virgo too.. trust me I'm the MOST stubborn old bat in the world! LOL
Next time he wants to take you to A&E go. The sooner we get all this sorted the better and the more likely you'll be to enjoy your course etc.
Your doctor has to tell you who he has referred you to. Then all you have to do is ring the hospital, ask to speak to that doctors secretary, explain your dilemna and ask her to ring with any cancellations! Its no big deal and it makes things better for them as they don't have to have wasted appts.
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Shazza
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Re: Hello everyone, new to all this!!
« Reply #16 on: Aug 12th, 2006, 12:08pm » |
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I promise that it will be the first thing I do on monday morning. I need to get this sorted, especially as I am in so much pain right now. It would be typical for them to stop whilst I am at the hospital though.
I am finding everything rather confusing though, the best type of medication to ask for, and knowing my luck I would have to ask! I have been fobbed off for 2 years now and to finally be taken seriously is a breakthrough. when I went back to my doctor a few days ago he seemed keen to put me on anti-depressents, I refused. I felt that again just being fobbed off. I am depressed because of the pain, that is all. My doctor has no clue whatsoever. I am hoping to get more face to face information from the neurologist.
The waiting is making me more nervous. I've never known pain like this and i always though that childbirth was bad!
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kcopelin
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Re: Hello everyone, new to all this!!
« Reply #17 on: Aug 12th, 2006, 12:28pm » |
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Shazza
I am so sorry you had to find us but I am very glad you did-lucky you-Helen is a stones throw away and she's awesome! I use melatonin and benadryl for the ight time hits-if you have CH this has helped others. If you are hesitant to try this-Red Bull (lots of taurine and caffeine) is a good thing-gotta slam it real cold.
Keep us posted, okay.
Besy wishes,
PFDAN
kathy
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Shazza
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Re: Hello everyone, new to all this!!
« Reply #18 on: Aug 12th, 2006, 12:38pm » |
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Thank you Kathy for your info, I'm am lucky to find such an informative support group that actually offers proper support
Thank you xx
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Shazza
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Re: Hello everyone, new to all this!!
« Reply #19 on: Aug 12th, 2006, 3:40pm » |
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Have just taken some co-codamol and now feel like poo, this is going to be a long night. It is just a case of wishing the days away for normality. What I cant understand is why it has taken so long for recognition for my suffering, why my doctor proves to be of no help and why I feel like banging my head against this computer!!!!!!
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LeLimey
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Re: Hello everyone, new to all this!!
« Reply #20 on: Aug 12th, 2006, 3:49pm » |
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Sharon as another option to A&E go to your local fire station. They have o2 at the flow rate we need and they'll let you use it, just explain why afterwards.
I'm so sorry that you're stuck getting through the weekend with this. You have my number, use it. If you need I'll come over. Its not a problem. My kids are with their dad so you wouldn't be putting anyone out.
Helen
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Shazza
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Re: Hello everyone, new to all this!!
« Reply #21 on: Aug 12th, 2006, 3:57pm » |
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wow your support is endless and fantastic thank you, but I'm sure I'll be fine, If it does become unbearable I shall go to A&E, but with my stubborness it would really have to be killing me.
Again Thankyou x x
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acidcase
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Re: Hello everyone, new to all this!!
« Reply #22 on: Aug 13th, 2006, 5:42pm » |
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Hey Shazza,
Sounds like your Dr is a bit of a gimp ! what about registering with a different Dr in your area ? maybe they would be able to give you a better prescription while you wait for your neuro appointment who knows maybe a new Dr could even get you a fast tracked appointment
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Shazza
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Re: Hello everyone, new to all this!!
« Reply #23 on: Aug 13th, 2006, 5:45pm » |
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I would change but registering with another doctor is about as easy as registering with dentists. There are huge waiting lists due to all the immigrants, not being funny but that is the reason. So I have to put up with the gimp unfortunatly!!!
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Shazza
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Re: Hello everyone, new to all this!!
« Reply #24 on: Aug 15th, 2006, 8:02am » |
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Woke up this morning pf and obviously in a better mood than I have been for weeks 
But now I can feel it coming so I am sat here reading through peoples post downing red bull, hoping, praying and wishing that it will stay away
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