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New CH.com Forum › Cluster Headache Help and Support › Getting to Know Ya › Sad that I might have to join :/

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Sad that I might have to join :/ (Read 4336 times)

idorko

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Re: Sad that I might have to join :/
Reply #25 - Sep 17^th, 2012 at 5:31pm

My mom is looking into getting me a tutor or some extra help in the event my cycle lasts for longer than the next week. I'm trying to keep up with the best of my ability.

My PCP agreed that O2 would be good for home, so she set that up for us and within two hours, the guy from the company showed up with my canister. He showed me how to use it and everything. 15 liters per minute for 15 minutes was what I was told for duration.

I only have had two hits so far today, hopefully nothing will come at 6, fingers crossed, but I have the oxygen now if I need it.

Wink

thanks for the spelling help.

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Kevin_M

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Re: Sad that I might have to join :/
Reply #26 - Sep 17^th, 2012 at 8:42pm

Quote:

I have the oxygen now if I need it.

You have done very well in this short time, a preventative, which will take time to become effective, and oxygen as an abortive.

If you have any questions about verapamil or oxygen use, just ask. You could probably post to the "meds and treatments" board to get the most and best responses about these now that you have them.

Quote:

the guy from the company showed up with my canister.

Canister? It should be a tank. "E" tanks are round, 30 inches tall and 4 inches wide. Canisters can be oxygen condensers and are not all that suitable for clusters because you are not breathing pure oxygen, which is what is needed to work.

The mask is an important feature for effective oxygen use. Many times they give you an improper mask for what is needed with clusters. Describe if it has holes or flaps on the side and if there is a reservoir bag attached.

If you'd like to post some info and get the best advice with oxygen, post to the "meds and treatment" board below this one.

If and when you need to use oxygen, we want it to work for you.

Because of this, there is a very good mask that was made special for clusters by an oxygen company and can be acquired from this website, the Optimask.

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idorko

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Re: Sad that I might have to join :/
Reply #27 - Sep 18^th, 2012 at 6:47am

Sorry, I was tired yesterday. It's an M tank. The guy said it was 125 cubic feet of pure oxygen. I have anon-rebreather mask as pictured in the Oxygen Info page. The limiter tops out at 15 L/minute but that's the rate for which my PCP prescribed.

Does anybody have issues with waking up or laying down dizziness with verapamil?
Last night I got up to use the bathroom (no cluster) and when I laid back down it felt as if the room were spinning. I laid on my side and the effect went away, but when I woke up this morning and arose slowly, I noticed it again.

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Kevin_M

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Re: Sad that I might have to join :/
Reply #28 - Sep 18^th, 2012 at 7:53am

Quote:

It's an M tank. The guy said it was 125 cubic feet of pure oxygen. I have anon-rebreather mask as pictured in the Oxygen Info page. The limiter tops out at 15 L/minute but that's the rate for which my PCP prescribed.

You and your Mom have done a fantastic job. Wow is it good to be with an excellent supporter!

Quote:

Does anybody have issues with waking up or laying down dizziness with verapamil?

Verapamil lowers your blood pressure and as a newly introduced med to your system the side effects will be evident until your body can accept the changes and adjust somewhat. You are a young age, which perhaps may make resilience a bit more difficult until a tolerance is gained.

Quote:

when I woke up this morning and arose slowly, I noticed it again.

Same thing, blood pressure. However, if you added melatonin last night, that's new also and could add to the effect.

I know this is difficult for you, but the unusual short duration of your hits -- 8 to 12 minutes -- lends more toward prevention. Verapamil is not the only way for prevention, but it can be effective.

Alternatively, check the thread on the "meds and treatment" board "123 days PF and I think I know why". It is a preventive regimen combining off-the-shelf vitamins and D3 supplements. This might be something of a fitting treatment for you with no side effects. There are many proponents of it. If you'd like it explained to you, just inquire on that thread and you will get any response you need. Note that you are sixteen so that pages of scientific addendum don't come scrolling down your screen, unless you need it. Wink

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