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Mel98

A (Pleasant) Update!

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Good evening everyone (well really it's good morning)!!

I last shared that I was in the process of being turned down for oxygen by my primary caregiver, and after nearly 5 years of being diagnosed with CH, I was referred to a Neurologist. I just had my appointment earlier today at 11 and....

My doc, James Zhang, asked me a variety of thorough questions related to when they started, the pain level, where the pain is located, triggers, etc. It honestly felt like a drag but I kept hanging on!! Finally, he explained that he is nearly certain that it IS in fact cluster headaches that I am dealing with. He then told me of common treatments for such headaches (Nortriptyline, Amatrex, to name a few), and then he asked if I had ever been given a Calcium channel blocker, and I haven't! So I'll now be taking Verapimil??? soon and see how it works. He also suggested that I should get an MRI just to rule out possible CH mimics, but that's a story for a different time, LOL. 

I asked him if he had ever heard of oxygen therapy for CH and he told me he had. And then I felt extremely nervous because I didn't want to ask if he'd prescribe me it, assuming he would shut me down as well. HOWEVER, when I got the nerve to ask if I could try it, he happily said that he would write it for me!! And then came the tears- from me and then my mom. <3 <3 <3

Fast forward to me having the script- I drive 30 minutes to an oxygen supplier who tells me that they won't fill my script because insurance won't cover it. UM HELLO MY MOM LITERALLY CALLED OUR INSURANCE THE OTHER DAY TO BE TOLD RATHER QUICKLY THAT IT IS INDEED COVERED. So.... she talks with her manager, and even though it's apparently their company policy to not fill the scripts for CH, her boss decides to give me my Oxygen by having my mom pay totally out of pocket and sending the RX to my insurance with the hopes that they will reimburse my mom at least part of the expense. And I couldn't be any happier! 

I was only given nasal cannulas for my oxygen and am aware I need a non-rebreather mask. I'm sitting here now recovering from a hard blow of a CH, and staring at my oxygen tanks wishing I could use them. I tried the cannula and the 15 L was so strong it my nose it almost felt like a burning sensation- and definitely didn't help. 

I need to get a NRB mask ASAP so I'm wondering what is the fastest method of getting one to me? Thank you for taking the time to read this and I hope you have a lovely night!!! 

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If you have Amazon Prime, or probably if you pay extra for fast shipping, you can have this mask (or one like it) in a couple of days: https://www.amazon.com/MEDSOURCE-Adult-Non-Rebreather-Oxygen-Mask/dp/B004Z8V47G/ref=sr_1_3_a_it?ie=UTF8&qid=1532090532&sr=8-3&keywords=nonrebreather%2Boxygen%2Bmask&th=1

Also, I think you can remove the cannula end and suck O2 from the tube, or maybe just suck it from the cannula (???)   I'm pretty sure I remember someone talking about that.  Not ideal, but maybe it would work.

I have also read of some people getting masks from local medical supply stores.  Might be worth a couple of calls.  I also remember someone going to a firehouse where there were also EMTs and asking for a mask and getting one.

Good for you!!!  Needless to say, your O2 supplier is disgraceful, and probably should be reported to some state regulator ….

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Also . . . 

Are you trying cold 5-Hour Energy shots at the first sign of an attack?  (Maybe you've already answered this.)

Did the doctor prescribe any Imitrex?  Do you know what type of Verapamil you're on?  Many people say the fast-acting (as opposed to the timed release) works better for them?  What's your dosage?  Is he going to monitor you and raise the dosage?

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1 hour ago, CHfather said:

Also . . . 

Are you trying cold 5-Hour Energy shots at the first sign of an attack?  (Maybe you've already answered this.)

Did the doctor prescribe any Imitrex?  Do you know what type of Verapamil you're on?  Many people say the fast-acting (as opposed to the timed release) works better for them?  What's your dosage?  Is he going to monitor you and raise the dosage?

I tried Monster energy, which I know isn't the same, but I have a naturally high-resting heartrate and am kind of weary about taking energy shots! Haha, weird for a young woman- but my doctor isn't concerned enough with it. Mostly my mother who is! lol 

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Hey Mel! There is a connection about a foot from the nose cannula. You can pull it apart to disconnect. This is how you change out to a new cannula. Now you have one hose to suck on. Exhale hard, then inhale deeply thru the hose in your mouth and cut the flow back while you hold a second and then exhale. Turn you flow back up and repeat.

The 'redneck' bag is really easy to make so I would give that a try as well. Unscented garbage bag, tape, and the top of a one or two liter bottle are all that you need. And when I ordered my mask from CH.com it was here in two days. That guy is awesome!

Congratulations on your success!! :)

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1 minute ago, spiny said:

Hey Mel! There is a connection about a foot from the nose cannula. You can pull it apart to disconnect. This is how you change out to a new cannula. Now you have one hose to suck on. Exhale hard, then inhale deeply thru the hose and cut the flow back while you hold a second and then exhale. Turn you flow back up and repeat.

The 'redneck' bag is really easy to make so I would give that a try as well. Unscented garbage bag, tape, and the top of a one or two liter bottle are all that you need. And when I ordered my mask from CH.com it was here in two days. That guy is awesome!

Congratulations on your success!! :)

Great! When it comes to having the mask or just using the cannula tube, how should my breathing be? I've read I should be hyperventilating but I want to make sure I do it correctly when it comes to when to breathe in and out from my nose/mouth. Thank you so much for your input! 

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There should be a page in the Clusterbuster Files section on the board for O2 use. What I do is a few fast exhales till your squeek - like a breathing test which you likely have never had! Just force out all the air in your lungs. At the end, you will be making a funny sound. Now inhale deeply, hold maybe 3-5 seconds and exhale with force again. Now use your O2 to inhale deeply. Hold, exhale with force. When in pain we tend to hyperventilate so that part will likely come naturally. Just breath faster than normal and much deeper than normal! You are trying to get rid of all the CO2 in your lungs and replace it with O2. Picture that and you have it.

Now, a very important part!! When your pain is gone, dial your flow back to match your normal breathing. Then sit and breath O2 at a normal pace for about 5 minutes. Without this 'post hit' breathing, that hit will come right back. With it, you will get your pain free time. Remember, a hit that comes an hour later is not a sign that the O2 is not working. It is a sign that another hit was coming! If I am low on O2, I cut the flow to almost nothing when holding and exhaling to conserve my O2. Turn it back up to inhale.

ATB

ADD: You can breath in thru your mouth and out thru your nose. With the Cluster mask, you will find that it comes with a breathing tube which allows that perfectly. And then nothing touches your face.

 

 

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Thing about the redneck bag is that it doesn't really solve the no-mask problem. But it does mean you use the O2 less often, and that might mean the mask is less important and you can get what you need in the short run from the cannula tubing.

Batch's recommended hyperventilation approach is described in the redneck bag entry.  Basically, it's ten 3-second inhale/exhale cycles using room air, then a deep inhale of the O2 that you hold for 30 seconds and exhale forcefully; then ten more 3-second inhales/exhales; then back to the O2.  The 3-second things are a deep quick inhale followed by a forceful exhale (forceful exhale would in all cases include a stomach "crunch" to get as much air as possible out of your lungs).  Batch has some cautions and indicators in that file, which you should look at. 

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Hi Mel!  First of all, sorry to hear of your diagnosis.  The good news is that you've come to the right place for advice.  My CH started at the age of 20...and is certainly more common in males.  Back then, doctors had no idea what was wrong with me!  I happened across a story in our local newspaper that had a caricature of a figure with a hot dagger in his head. I did a double take, read the story, and knew that was me, a 'ClusterHead'.  Been suffering 40+ years with an awesome, supportive husband, good docs, and lots of great support and advice from sites like this and CH.com.  What I have found is that there is no silver bullet for the bunch of us, but individually, we find a 'cocktail' that works.  I too, am in the process of retrying O2.  It is challenging, as we live outside of most delivery areas.  Try, try, and try again!

The best of luck to you...

Rose...a CH sister! 

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