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Topic: Hello everybody! I'm new here... (Read 255 times) |
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Cat_CH
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Hello everybody! I'm new here...
« on: Jun 28th, 2006, 3:56pm » |
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Dear all,
I have browsed this site, and felt like leaving a little message for you. It seems like you are a great bunch of people, and there is a lot of information here to find. At first I was not sure if I should introduce myself at all, denying a bit that I was one who needed to get in touch with others about this.
But "It will end soon" has now been a thought for the last 10,5 months, and since it does not seem to end today, I just felt like checking in and paying you a visit. Maybe I'll hang around here once in a while.
So... I was diagnosed with CH in September 2005, and the period which my doctors said would maybe last up to 3 months have now lasted 10,5, and I swear that I'm going to go crazy some day soon..hehe.. I've managed to keep my part-time job (involving a lot of travelling), and at the same time working on my master thesis, but I'm kind of burnt out by now.
I see from your experience and advice that at least I'm kind of on the right track with medications and everything. Thats kind of comforting.
So.. not much more to say right now, but maybe I'll get back with some questions or stuff.
Best of wishes to all of you!
Cat
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LeLimey
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OUCH-US - Less "ME" and more "WE"
 
 
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Re: Hello everybody! I'm new here...
« Reply #1 on: Jun 28th, 2006, 4:45pm » |
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Hello Kat and welcome!
We do have another very experienced ch sufferer here from Norway in Svenn, or "The Mad Viking" who will no doubt be along to say hello soon and offer more advice which will be relevant to Norway.
We will help you all we can bt in the meantime if you can list what meds you have been taking and their doses if you can remember we will know where to start from.
Take care
Helen 
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Cat_CH
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Re: Hello everybody! I'm new here...
« Reply #2 on: Jun 28th, 2006, 5:00pm » |
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Hi and thanks!
Yes, I thought I saw another norwegian flag here somewhere..
For medications:
- I was first diagnosed with trigeminus neuralgia and treated with 2 types of meds against epilepsy, painkillers (pinex forte in norwegian, kodein¶cetamol stuff) and oxazepam)...didn't do much good, spent 2 months in bed. (BAD BAD period).
- After CH diagnose I get Verapramil (240 mg). Maybe I'm wrong, but I feel that it does not give me the same effect any more. It was better at first.
- I have some imigran shots (guess that's imitrex, but don't get a lot of them)
- I still have to take some painkillers, which at least take "the top" of my worst attacks. (I just read the "narcotics or not" tread in the forum and I'm just saying that I would not know what to do without them..)
- I'm asking my neurologist to get some oxygen now, and maybe discussing other possible meds or something.
- Caffein helps sometimes. (Will try energy drink and water tips)
- Usually I have 3-4 attacks a day, but I think what you call "shadows" has been bugging me a LOT lately. (Tired now..)
- Sleeping has been hard, I have been taking some sleeping pills to "knock me out"...but I'm afraid to get addicted to them. I must find someway to get some sleep to be able to function during daytime, as I have more pain in the evenings which makes it impossible to sleep.
That's all I can remember now
Cat
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| « Last Edit: Jun 28th, 2006, 5:03pm by Cat_CH » |
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Kris_in_SJ
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Re: Hello everybody! I'm new here...
« Reply #3 on: Jun 28th, 2006, 7:59pm » |
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Hi Cat,
Welcome. I'm sorry you're having such a hard time of it right now.
Thanks for sharing your meds with us. Verapamil can be very effective in prevention, but it usually needs to be given in higher doses than you're taking. For most sufferers, that's 480mg/day at a minimum - as long as your blood pressure doesn't suffer.
Also, if it's available in your country, you might try getting some Melatonin (an OTC here in the U.S.). It's a natural supplement and non-addictive. When in cycle, I take 9mg/night about 30 minutes before bed. After a few days, it really helps with sleep and cutting down on the nightime hits. I'm sure you can find it online from a reputable pharmacy.
Meantime, you're on the right track with the Oxygen. I say demand it! If you haven't already seen it, here's a link to the latest medical treatment of clusters
http://www.brightok.net/~mnjday/chtherapy.pdf
Welcome to the family!
Kris
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Richr8
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Re: Hello everybody! I'm new here...
« Reply #4 on: Jun 29th, 2006, 1:38am » |
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on Jun 28th, 2006, 5:00pm, Cat_CH wrote:| I'm asking my neurologist to get some oxygen now, |
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Don't take no for an answer. It's the best abortive for many of us without side effects.
on Jun 28th, 2006, 5:00pm, Cat_CH wrote:| and maybe discussing other possible meds or something. |
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Make sure that you review all of these before your next visit to yo neuro.
http://www.brightok.net/~mnjday/chtherapy.pdf
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| « Last Edit: Jun 29th, 2006, 1:39am by Richr8 » |
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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spidey426
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Re: Hello everybody! I'm new here...
« Reply #5 on: Jun 29th, 2006, 1:49am » |
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Hey there, welcome to the nut-house: )
If you're up for trying anything.. I can tell you the one thing that worked for me:
www.clusterbusters.com
Your cycle's been over 10 months? Have you always been chronic?
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Cat_CH
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Re: Hello everybody! I'm new here...
« Reply #6 on: Jun 29th, 2006, 10:25am » |
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Dear all,
Thank you all for your support and links to very useful information!!! It was clearly the right thing to come here
I do have some updates, since I went to the neurologist today (didn't even have an appointment, just demanded to see him..heh).
- Verapramil dose is being increased, but only by 80mg at first, he wanted to be careful because of side effects. (I tend to get tired and out of energy from them). I'll check in with him next week to review the dose.
- I'm getting oxygen, but needs to apply for it through the hospital, so it make take some time. (Damn, but I guess just going to the nearest diving school and asking for a tank won't work?)
- Neuro-man did not like the idea about melatonin and said I would probably not do much for me.... I will listen to him for now, but let's see about that next week... I need to get off these sleeping pills.
Spidey: Yes, it totally feels chronic, but I don't want to start using that label until it's been a year without remissions... that's 1,5 months from now, keep your fingers crossed  Since I was diagnosed with CH in September, a review of my health history shows that I had 2-3 cycles some years ago, each lasting about 2-3 weeks. So why it decided to come back now and stay, I don't know...
--
I have a question that has been troubling me, maybe I could get your opinion?
- When I went to see my regular doctor at first he thought it was trigeminus neuralgia and prescribed epilepsy medication for 2 months (without effect). Could this have made my condition "worse" in any way, and prolonged the cycle?
--
And again: Thank you very very much for your support and advice, it is greatly appreciated!
Cat
PS: Where is the part of the forum where I yell and scream and complain about all the stupid people that I meet on my way and think I have a "headache" that can be cured by "taking a nap"???
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Kris_in_SJ
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Re: Hello everybody! I'm new here...
« Reply #7 on: Jun 29th, 2006, 5:14pm » |
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Hi Cat,
My guess is that any meds you might have been given for epilepsy would not have made your clusters worse. One of my first episodes, I was also diagnosed with Trigeminal Neuralgia and was give Neurontin. No improvement, but no worse.
I still think you should consider the Melatonin. It absolutely CANNOT hurt you, and helps so many of us.
BTW - to rant and scream and talk about general issues, try the "General" board. It's for everyday type of chat.
Hugs,
Kris
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