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New here 4 weeks in pain. (Read 1272 times)
Kennymk
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New here 4 weeks in pain.
Nov 20th, 2012 at 7:24pm
 
I am a 43 year old male and live it Winnipeg,Canada. About 4 weeks ago my hated old friend CH came back after 2 years free. In the last 4 weeks I have bean to the ER twice, unlike before the ch attacks are coming at different times every 3 days or so, and very strong lasting up to few hours, this happens about every 3 days or so. I have been trying to understand what could be my triggers i.e. food,sleep,but they hit mostly when the temperature changes (hot/cold) and at night. My last attack was today at 4 a.m. when I got out of the bed to turn off the heat shortly after getting back in bed the CH hit and it was a bad one. Am hoping to find hope for my CH attacks here.
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Skyhawk5
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Re: New here 4 weeks in pain.
Reply #1 - Nov 20th, 2012 at 10:25pm
 
Welcome to CH.com,

You will learn more on this site than most Doctors will ever know. I strongly recommend you read all you can on here. Educate yourself about CH right here from people who know.

CH is a very rare illness so worldwide little is known. The real battle is yours and mine. Knowing the best way to fight this ugly disease is right here on this website.

For me the ER is the last place I want to fight a CH. By the time I'm seen, the attack is over. And they don't know what to give me. Pain meds don't work.

Don

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Though I walk through the valley of the shadow of the Beast , I  have O2 so I fear him not.
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Kennymk
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Re: New here 4 weeks in pain.
Reply #2 - Nov 20th, 2012 at 10:42pm
 
Thanks Don I wish I didn't have to be here if you know what I mean. I have spend the last few hours reading as many posts I can. Some of them make me scared but some give me hope. Like the link between caffeine/energy drinks and CH. Something I never knew about or even tried,but at this point will try anything.
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wimsey1
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Re: New here 4 weeks in pain.
Reply #3 - Nov 21st, 2012 at 8:18am
 
Hello Kennymk, and welcome. Mostly, trips to the ER are vain exercises in futility. They neither understand CHs nor know how to treat them. Even the more "enlightened" ER docs who give you O2 use too low a flow rate and the wrong type of mask. You don't mention it, so I have to ask: do you have a neuro who is a headache specialist? It can make all the difference in the world, particularly when it comes to prescribing proper levels of preventatives and abortives. Most neuros who are not headache specialists will try the migraine route hoping it will help. Generally, it does not. What have you have been using to combat these? Blessings. lance
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aubell
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Re: New here 4 weeks in pain.
Reply #4 - Jan 10th, 2013 at 9:24pm
 
First of all I'm sorry that they've returned after so long. The feeling is terrible.

Sad, but most doctors have no idea what is going on. And its an expensive ordeal too with medicines, MRIs, CAT scans, and visits.

I do hope that you can find help.
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Skyhawk5
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Re: New here 4 weeks in pain.
Reply #5 - Jan 14th, 2013 at 1:11am
 
There is hope. I've learned to stop 97% of my attacks from here. With Batch's vitamin D3 and a High Flow O2 setup along with Lithium, Verapamil and DHE injections.

Oxygen is my #1 abortive, I've used for 23 yrs and as our knowledge got better my abort times got better. Now I take it with me when I'm in cycle, confident I'll stop an attack anywhere.

Don
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Though I walk through the valley of the shadow of the Beast , I  have O2 so I fear him not.
Skyhawk5655  
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adam u.k.
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Re: New here 4 weeks in pain.
Reply #6 - Feb 20th, 2013 at 9:55am
 
hi there mate...im new to this site...i have had CH for 4 weeks now....never had them before and boy!!!! do i know now....absolute nightmare...so painful..ive been in tears and im 6ft 2 and 220lbs.....i live here in UK...have seen doctor and finally had an injection SUMATRIPTAN (google name) it helps but doesnt stop future attacks...likewise if you have any ideas please let me know...hang in there...its good to know there are others there to help and understand
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Guiseppi
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Re: New here 4 weeks in pain.
Reply #7 - Feb 20th, 2013 at 12:58pm
 
Welcome to the board, first off do visit your local website as they have some great advice on navigating your medical system on that side of the pond!

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Are you working with a headache specialist neuro yet? My understanding of your medical system over there is your entitled to a direct referral. We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. I’ve had CH for 34years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

This link will show you how to get set up with welding oxygen:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

As you've found, the sumatriptan (or Imitrex) nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

Follow this link  to the medications section of this board and read the post  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s healthy for you even without CH! I've gone pain free for 3 years now on this regimen, my experience is hardly unique. REALLY something you need to try right away. Might make everything else unnecassary.

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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