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saxman

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does everyone get many hits a day?
Dec 17^th, 2009 at 6:55pm

I get 8+ hits a day. First i feel a shadow, then within 5 minutes it's raging> this pain lasts from 30minutes to an hour and a half. then gone! Compltely!! then usually in no more than an hour here comes the shadow and it's on again!
For years it was daytime only, now I get the horrors of hourly wake up all night!! I understand that rem sleep is a trigger. thanks to this site I discovered Prednisone years ago and that has saved me although less effective than it used to be, last time I had to do 3 10 day tapers.
Now I read I should be on a preventative while taking the pred? What would you think I should ask for (I,m paying now no ins(
thanks

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Potter CH.com Alumnus Offline Team MOOSE DROOL Stinky Stuff on a Hook Prostaff Posts: 3600 Blgs.Mt. Gender:	Re: does everyone get many hits a day? Reply #1 - Dec 17^th, 2009 at 7:01pm Get oxygen. Potter
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Jeannie CH.com Sponsor Offline Live, Laugh, Love.... Posts: 2333 St Louis, Missouri Gender:	Re: does everyone get many hits a day? Reply #2 - Dec 17^th, 2009 at 7:12pm Verapamil is a good preventative medication that takes a couple of weeks to build up in your system. Many use a steroid taper to get relief while the Verapamil has a chance to reach it's proper levels to do it's job. It is not an expensive drug and many find that it helps in reducing the numbers of hits. Jeannie
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saxman CH.com Junior Offline I Love CH.com! Posts: 80 portland or Gender:	Re: does everyone get many hits a day? Reply #3 - Dec 17^th, 2009 at 7:22pm I've trie oxygen in the er and never noticed anything?
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Val_

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Re: does everyone get many hits a day?
Reply #4 - Dec 17^th, 2009 at 7:39pm

saxman wrote on Dec 17^th, 2009 at 7:22pm:

I've trie oxygen in the er and never noticed anything?

The Oxygen needs to be high flow through a non-rebreather mask... did you use it through nose tubes or a mask? do you know what flow rate it was at? If not, it was probably way too low. Read the Oxygen Info link on the left if you are interested! Your doc can prescribe this - most people get relief from their cluster attacks if they catch them early enough - it is an abortive, not a preventative. You said you are episodic - it might be just the thing for you!!!

Val

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Mac_Muz

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Re: does everyone get many hits a day?
Reply #5 - Dec 17^th, 2009 at 8:02pm

Get o2! Just get it!..... get off the blasted meds, but that's just me.. Get o2 and breath it like you mean it. It must be 100% which is bottled, and it can be welders or med as it is the same stuff... The med bottles are painted better,,,maybe. There are ways depending on what set up you get.

I am not sure, but think I am the only one here using welders equipment currently. If you go that way we will talk, if you go with medical stuff others can tell you better.

I read some scarey tails on the pred..

Seems to me each series of attacks will varry, I never had more than 6 a day so far, and this time only 3, and in late night spaced about 2 hours apart.

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Karla

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Re: does everyone get many hits a day?
Reply #6 - Dec 17^th, 2009 at 8:46pm

I used to get 8 hits a day each lasting 1 1/2 hrs long or a little longer. I would get a 30 min. break and usually they would come back full force. Seems at times like a never ending nightmare. I am on a preventative now that has stopped them for me. You should consider oxygen, verapamil, lithium, energy drinks and melatonin or if non of the prevenatives work for you, you may want to consider the cluster buster methods. Check out their website.

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Karla&&suffer chronic ch &&ch.com groupie since 1999&&Proud Mom of Chris USMC Semper Fi

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Potter

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Re: does everyone get many hits a day?
Reply #7 - Dec 17^th, 2009 at 9:02pm

Mac_Muz wrote on Dec 17^th, 2009 at 8:02pm:

Get o2! Just get it!..... get off the blasted meds, but that's just me.. Get o2 and breath it like you mean it. It must be 100% which is bottled, and it can be welders or med as it is the same stuff... The med bottles are painted better,,,maybe. There are ways depending on what set up you get.

I am not sure, but think I am the only one here using welders equipment currently. If you go that way we will talk, if you go with medical stuff others can tell you better.

I read some scarey tails on the pred..

Seems to me each series of attacks will varry, I never had more than 6 a day so far, and this time only 3, and in late night spaced about 2 hours apart.

Not by a long shot.

Potter

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Mac_Muz

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Re: does everyone get many hits a day?
Reply #8 - Dec 17^th, 2009 at 9:07pm

Potter wrote on Dec 17^th, 2009 at 9:02pm:

Mac_Muz wrote on Dec 17^th, 2009 at 8:02pm:

Get o2! Just get it!..... get off the blasted meds, but that's just me.. Get o2 and breath it like you mean it. It must be 100% which is bottled, and it can be welders or med as it is the same stuff... The med bottles are painted better,,,maybe. There are ways depending on what set up you get.

I am not sure, but think I am the only one here using welders equipment currently. If you go that way we will talk, if you go with medical stuff others can tell you better.

I read some scarey tails on the pred..

Seems to me each series of attacks will varry, I never had more than 6 a day so far, and this time only 3, and in late night spaced about 2 hours apart.

Not by a long shot.

Potter

I knew besides tough love there was a reason I liked you... Maybe one day we can play mumbly peg with bayonttes, and stick each other in the eye! Won't that be fun? Wink

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burnt-toast

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Re: does everyone get many hits a day?
Reply #9 - Dec 18^th, 2009 at 9:19pm

(Modified to add) - Multiple attacks daily/nightly is one truly nasty symptom of this disorder. Obviously fighting through the pain isn't a picnic but we somehow manage. Functioning normally while being deprived of sleep is (in my opinion) the most brutal aspect of this nightmare.

Arm yourself with all the information available to you and make time to work through your options with a knowledgeable Neurologist. Obtaining information and ideas here is a good thing but please remember that we’re not the professionals.

Finding a combination of abortive and preventive therapies that are effective for you should be your goal. It will take time to establish core meds., treatments, and schedules that work best. Please remember little if anything is perfect in treating CH, look for significant improvement, not necessarily a cure. Be prepared to maintain a journal to accurately track results for review/adjustments with your Neurologist.

Headache clinics are a great place to being searching for knowledgeable Neurologists if you need one.

Provide updates on you progress now and then - it's a good to vent frustration during the process of gaining some control over this nightmare.

Good Luck and Best Wishes,

burnt-toast
(Tom)

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« Last Edit: Dec 19^th, 2009 at 7:00am by burnt-toast »

Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space.

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gore2424

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Re: does everyone get many hits a day?
Reply #10 - Dec 19^th, 2009 at 8:56pm

Since chronic Nov 1999 (had a 4 month break after brain surgery then came back full force) I have 3-4 pain level 24/7 but have something for the really bad times. I have O2 tank and all the proper equipment but sorry to say not any help for me :>(. BUT thats just me I hear of sssoooo many people it helps them big time. Terry

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Mac_Muz

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Re: does everyone get many hits a day?
Reply #11 - Dec 20^th, 2009 at 3:42pm

gore2424 wrote on Dec 19^th, 2009 at 8:56pm:

Since chronic Nov 1999 (had a 4 month break after brain surgery then came back full force) I have 3-4 pain level 24/7 but have something for the really bad times. I have O2 tank and all the proper equipment but sorry to say not any help for me :>(. BUT thats just me I hear of sssoooo many people it helps them big time. Terry

Try to explain how you use the o2? What happens and what do you do?

What type of o2 equiment is it? What kind of regulator and mask do you use?

What breathing tecniques have you tried? What is the liters per minute, or psi?

Just maybe someone or another has a tip you haven't tried... I hope so.

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