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new to the site 10 yr sufferer :( (Read 2119 times)
tigger1975
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new to the site 10 yr sufferer :(
Feb 16th, 2013 at 2:01pm
 
hi all I am pleased to have come across this site and have found many answers to things and to see others basically in same situation its somewhat good to know we are not alone...
I have carried this CH for the past 10 years but like some was diagnosed with sinusitis even though through many treatments and last result 18 month ago was FESS LEFT AND RIGHT AND SEPTOPLASTY ... but still the horrid headaches come back about 6 weeks ago return to my gp yet again to be given every dug under the sun for sinusitis,, again nothing worked even to eradicate the pain Not even morphine and tramadol hits eased or even touched the pain... after attending emergency ENT appointment for them to use the camera up nose thingy was it discovered the sinus's were clear and to look down the CH route.. But trying to get my GP to understand this and I had to tell him wat meds I wanted .. he then gave me 6x6mg sumatriptan injections to TRY !!! much to my amaizment something that worked, but trying to obtain the amount I need to get through a week is another story so another 6x6mg injections not even on repeat prescription Sad I get 4 to five attacks a day but really have to save a jab for the nocturnal sleep attack.. I have found that the steam and frozen peas idea works a bit to ease an attack .. but any more help or tips would be great.
I am a 37 yr old male living in uk
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Guiseppi
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Re: new to the site 10 yr sufferer :(
Reply #1 - Feb 16th, 2013 at 2:48pm
 
Welcome to the board. Are you working with a headache specialist neuro yet? Start by visiting your excellent support group Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register;  As I understand it you have a right to a referral to a specialist, they might be able to help you navigate your medical system more easily. 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

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. Check out this link to get up to 3 aborts per single injector. A great way to stretch out those precfious shots:

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

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 been off cycle coming up on 3 years using this. Sounds too simple to work but for the majority who try it, it does.

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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tigger1975
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Re: new to the site 10 yr sufferer :(
Reply #2 - Feb 16th, 2013 at 6:49pm
 
thankyou for your kind welcome Smiley I have been refered to neurology but here in uk it can actually take a while  Cry the gp's here don't really understand the severety of some of the attacks and just keep giving out the likes of morphine which I can say helps not in the slightest. I have probably a minimum of 2 severe attacks a day and can lead upto 5 at highest so far, there hasn't been a day yet in the last few weeks that I haven't been attack free! I actually am starting to fear sleep as that's normally when the worst hits, I will explore your method of the sumatriptan doses at 2mg but the auto injectors I have are 1 complete unit, so need to find a way in to get to the vile part and really not a big needle fan the sight of them brings me to a sweat lol bit will look into all possible info and links you have offered Smiley many thanx once again
Dean
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Guiseppi
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San Diego to Florida 05-16-2011


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SAN DIEGO, CALIFORNIA USA
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Re: new to the site 10 yr sufferer :(
Reply #3 - Feb 16th, 2013 at 7:06pm
 
In order of importance.....really give that vitamin D-3 regimen a look see. I've got one really good friend on the board here who spent years as a chronic, nothing ever helped. He'd spend several days at a time in the hosptital getting the IV's just to get the raging attacks back under control. He's gone pain free on the D-3. As I mentioned, I'm coming up on 3 years without a cycle...I'm a real believer in it. The best part about it is, even without CH, it's a healthy supplement regimen.

Hoping you catch some pain free time soon

Joe
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Bob Johnson
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Re: new to the site 10 yr sufferer :(
Reply #4 - Feb 16th, 2013 at 10:31pm
 
Get in touch with your OUCH support group. You have the right to direct referral to a headache specialty clinic--not to a general neurologist.
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Bob Johnson
 
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Mike NZ
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Oxygen rocks! D3 too!


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Re: new to the site 10 yr sufferer :(
Reply #5 - Feb 17th, 2013 at 1:27am
 
Bob Johnson wrote on Feb 16th, 2013 at 10:31pm:
Get in touch with your OUCH support group.


The URL is Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register and they also have a support phone line.

And do stay around here too, getting the benefits of both sites.
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tigger1975
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Re: new to the site 10 yr sufferer :(
Reply #6 - Feb 17th, 2013 at 7:17pm
 
thank you all for the pointers in the right direction.
I have took out membership at ouchuk.org and hopefully will convince my gp that I need more than 3 12mg of sumatriptan a time to get through these difficult times , the worst is to fear sleep as that's usually the worst attack on a kip9-10 scale Cry
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Mike NZ
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Oxygen rocks! D3 too!


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Re: new to the site 10 yr sufferer :(
Reply #7 - Feb 18th, 2013 at 4:23am
 
Don't forget oxygen too. It can kill off lots of CHs, leaving the sumatriptan for when you've not got oxygen around.
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ndhillst
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Re: new to the site 10 yr sufferer :(
Reply #8 - Feb 27th, 2013 at 10:22pm
 
I'll add another vote for the O2.  Sumavel works, but I don't like it's side effects.  The O2 isn't portable, but it takes care of my CH within 15 min with no side effects.

My neurologist gave me a card that lets me get my Sumavel for a$15 copay along with my insurancefor the first XX number of injectors (I cant remember how many) or $50 if uninsured.  You could talk to you doctor and see if there is a similar program in the UK or maybe go to the Zogenix website and check - there is info in the savings card there.  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
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