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Stevieray
New Board Newbie
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Hello from the frozen north. As you suspect I am a new user to this site but am an epesodic cluster sufferer  .
I had my fist episode in the spring of '93 and went through the routine of drugs like percocet and lithium which helpd the pain but as far as I know did nothing to prevent them. After seeing a neurosurgon and having him tell me that I would just have to tough it out I opted to try a naturopath. He did a bunch of tests on me with some sort of electrical device and then told me I was allergic to lithium. He suggested I stop taking it and put me on a candida killing diet and put some drops under my tongue and I have been free of the devil for 10 years but mow they are back again!  I am now using Imitrex nasal as well as the pills for the pain and am on Verapimil as my DR. did research and found it to be the most used drug for clusters which was a good thing as I had really high blood pressure at the time of the appointment.
Needless to say nothing seems to be working except for the Imitrex. I was told that the injections were no longer available so I opted for the nasal spray. I have also used the pills but they take 30-45 minutes to work and that is way too long to suffer. The nasal spray works in less than 10 minutes if I stay still untill it does.
My headaches come at any time of day/night and disrupt my work and driving to and from work (1 hour each way) and the ones at night wake me up and are in high gear and gaining speed. I have considered Melatonin but our wonderfull goverment has banned it so you can imagine what they would say about 'shrooms! Anyway, I have done some reading in these forums and am open to suggestions from you fellow sufferers. I will wait a couple of more weeks and then may try the naturopath again as I am sure that it was his cure that worked.
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ave
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She is beside herself; her favourite position
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Re: newbie
« Reply #1 on: Jan 6th, 2004, 5:07pm » |
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Well, sadly welcome to this board, stevie.
It is news to me that Imitrex shots are no longer available. Maybe you'll have to plague your doctor some more. There have been some good results with the nasal spray, but it does not work for everybody.
Imitrex pills are too slow in working.
There is a lot of mis-knowledge regarding Verapamil. Doses are often kept very low (2 x 80gm pills a day) while some people here go up to 360, 480, and some even to 960 a day.
Also, Verapamil takes some time (8-10 days I believe) to kick in. And lastly, many docs prescribe Verapamil retarded release, since for BP problems it seems rto be best, but popular opinion here has it the ordinary release is better.
Have you tried Oxygen? There is a good link to the left on the board. It has helped a great many people.
A prednison taper is also often used as a preventive.
The candida-diet has been discussed here before, and some people seem to have had good results.
Do check out the OUCH site and all the cluster resources there. and feel free to ask questions.
Painfree days and nights to you
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There is a break in reality. Do not adjust your mind.
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thomas
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Welcome to the club, read until your eyes go like this 
There's lots of good folks here and even some jerks like me but we're all ready to help out any way we can.
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CC
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stevie the injections are still available, i am in canada as well! the just changed from the pre-filled syringes to the viles ! so you have to fill the needles yourself!!! wich works outy much better because you can fill the syringe as much as you want!!!! the also have the pre filled cartridges for the epi pens!! I am positive that they are still available as i am currently getting them right now!!
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Margi
CH.com Alumnus
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Re: newbie
« Reply #4 on: Jan 6th, 2004, 5:51pm » |
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Hi Steve - another Canadian here. I was just at Shoppers Drug Mart last night, filling my hubby's 'script for Trex inhalers and they tried to give me the injections....so they are available.
VERY interested to hear more about the candida diet - I've been an interested observer of that theory for years. 10 years of remission is WONDERFUL! So you basically had to eat nothing white, right? No sugar, bleached flour, or dairy? Do you know what the drops were that he gave you?
And, just so you know - we've started up an O.U.C.H. Canada website as of January 1. Please feel free to drop in anytime!! The link is at the bottom of my post here.
p.s. I just checked your profile. You live in Sicamous!! you live in God's country, man!! I love it there!!! (Calgary, here).
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| « Last Edit: Jan 6th, 2004, 5:54pm by Margi » |
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Stevieray
New Board Newbie
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Re: newbie
« Reply #5 on: Jan 6th, 2004, 7:14pm » |
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Thanks for the replys! It is a sad and unfortunate club we belong to tho. In a response to the questions asked, the diet was brutal. Nothing unbleached,pickled,fermented, no caffine, sugar, booze of any kind, no cured meats so my diet consisted of fresh veggies pure meats potatoes hearbal teas etc,and was on it for six weeks. I lost 30 pounds and felt the best physicaly that I have ever done, I even went to a gym to work out!! Alas the old evil ways came back (eating and beer) but the headaches didn't. As for the drops under the tounge, I have no idea although some may have been a candidacide. I went to the doc today and am back on lithium for a while although I am not showng any bi-polar signs. I was the last time.
I am also considering going to a tanning booth as it seems that I am solar powered and really hate the dark months of winter. I have heard that CH can be triggered by the fall and spring equinoxes so perhaps a light box would help. And hello to the fellow canuck! If you live in Calgary you probably have been to Sicamous B.C on the sunny Shuswap Lake, where I live, the house boat capital of Canada. Unfortunatly it is minus 6 farenheit and snowing right now, Hurry back summer!!! Anyway, thanks for the replys and keep hoping for a cure. I will keep you posted of my progress. Stevieray.
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brad267
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Re: newbie
« Reply #6 on: Jan 6th, 2004, 9:51pm » |
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I still get the Injections... 5 vials/box.
They just changed the outside box, to make it prettier. The NDIC is still the same...
(reading from one of many boxes in the "stash"
NDIC: 0172-0449-02
Hope that helps,
Brad
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TxBasslady
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Re: newbie
« Reply #7 on: Jan 6th, 2004, 10:14pm » |
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Hi Stevie,
Welcome to Clusterville! 
Lots of good information, and great support here.
Hope you get those injections! They seem to work for quite a few here.
Sending you lots of pf vibes from Texas
Jean
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