Episodic suffer - worst cycle yet

[jon019]

re the a/c....many a clusterhead same-same. i did that, or head in freezer, or hottest shower on head, some do cold, some alternate. spiny cooks herself like a lobster..

[Acanderson34]

28 minutes ago, CHfather said:

[Edited to say that I was writing this as your post came up.]

I know that link I posted earlier is a lot to read, but I'd urge you to go through it (or ask your wife to).  https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

Remember that you can divide your Imitrex injections so there are a lot fewer side effects: https://clusterbusters.org/forums/topic/2446-extending-imitrex/  I might not be in the majority about this, but I don't think a couple of 2mg injections of sumatriptan are going to make your situation worse, and I'g go for stopping the pain.  You can do all the better things later.

Lots of people use just a breathing tube in the mouth, with no mask.

Would this mask from Canada be available sooner?  https://www.performancehealth.ca/nonrebreather-mask   They are very inexpensive -- any chance you could ask for one from a local EMT unit, hospital, or maybe fire station?  (I'm not sure whether it'll make much difference at 3 lpm, though.)  Did you ask your O2 supplier about getting proper equipment?  

My wife asked for a larger tank this morning when she called and E tanks are their biggest. They obviously don’t treat CH that often. They are more sleep apnea and copd focused.

[spiny]

In through nose and out through mouth is because you have a cannula. Many, myself included, use the breathing tube. It is just a tube that you suck the O2 through and no mask sits on your face. I can't handle the pressure of the mask. When not inhaling, a valve closes off the opening in the tube and directs the O2 to fill the bag hanging from it and you exhale out the tube. That gives you ready O2 for the next breath. I like to run mine a little high as the force of the O2 pushing when I inhale, seems to help with my aborts.

With the Redneck bag, you inhale through your mouth and out anyway you want to exhale. It will give you more O2 than that tubing will too. As you are holding your breath for a few, it is still filling the bag. So, you have more to pull from and are not limited by the 3lpm delivered by the regulator. 

21 minutes ago, jon019 said:

spiny cooks herself like a lobster..

Accurate!!!  Works best for me. 

For nocturnal hits, you can try sleeping in a recliner with your head above your heart. This enables you to wake earlier in a hit and get on the O2 sooner. And not going 'prone' just plain seems to help many of us. I have spent whole 6 month cycles in the recliner that I hate!!!  It is old and ugly, but serves a great purpose. Others sleep on pillows on a table in front of them. I can sleep a bit if I do not lie down to do so.

Cold air inhale also jives with ice cube in roof of mouth. Both are hitting the soft palate with cold, blood vessel shrinking temps. So stuck inside? Grab an ice cube and hold it up there with your tongue. 

Weird things can and do help.

[Freud]

If all I could get was a nasal cannula I’d either fill up a bag like the redneck posts or I’d put the cannula in my mouth and fill my lungs. I know a cluster head that does that...

[Shaun brearley]

I put an ice pack on my tempul on the side I get my attack it seems to help . I've tried the ice cube in my mouth but can't  keep it there long enough for some reason 

[CHfather]

25 minutes ago, Shaun brearley said:

I've tried the ice cube in my mouth but can't  keep it there long enough for some reason 

It is said that sucking ice water through a straw aimed at the roof of your mouth will also accomplish the desired "brain freeze."

[Acanderson34]

I got a hold of my dr today and he said years back we tried to break the cycle with a prednisone taper for 10 days. I can’t remember if it worked or not.

 

has anyone tried it? With it without success?

[CHfather]

Generally successful at stopping the pain for a while.  Generally not successful at breaking a cycle, but sometimes it does. The dosage recommended by a leading expert is 1 mg/Kg up to 60 mg for four days tapering the dose over three weeks.  

Edited November 15, 2021 by CHfather

[jon019]

2 hours ago, Acanderson34 said:

I got a hold of my dr today and he said years back we tried to break the cycle with a prednisone taper for 10 days. I can’t remember if it worked or not.

has anyone tried it? With it without success?

...if there's such a thing as a "standard treatment" for CH...this is it. many a clusterhead has found temporary relief while a prevent like verapamil is ramped up. i did a methylprednisolone IV/taper twice. the first time it stopped a cycle (mid-cycle!) which was incredible but rare...the second time no effect. none further since i didn't want to get on that particular merry-go-round long term.....and verapamil/oxygen/energy drinks/perhaps D3 were effective......

...certainly worth a second attempt at sufficient dosage....

[Acanderson34]

I should have mentioned I was on verapmail basically since 2001 and I was taking 240mg twice daily until about a year ago when my doctor thought it might be ok to start tapering off. I’m down to 40mg twice daily. 
could this be why the cycle came back? Should I ask to bump up the dosage again. The reason we started the taper was because I was constantly exhausted and had low blood pressure

[Shaun brearley]

The trouble with varapamil is the idea dose is 960 mg a day which is a very high dose for anyone can cause major heart issues you need to have  ECG  every couple of weeks as you increase the dose . I  was put on varapamil when first diagnosed with CH I only managed to get up to 460 mg a day then had to stop as it was causing me heart block.  But it does work for many CH sufferers I'm know on Toptrimate as a preventative have been for years I'm episodic and have missed a few cycles I'm not saying it's down to the Toprimate but it's the only preventative I used at that time 

[CHfather]

Acan', the D3 regimen is ultimately a healthier, and better, preventive strategy than any med.  It will take effect as quickly as verapamil, if you need high doses of verapamil to be successful and have to be titrated up to those levels (that is to say, the D3 regimen might not be effective right away, but verap won't be, either).  I can't say whether that same kind of time period before effectiveness is true of topirimate or other meds, and I'm not saying not to try any of them -- just saying that D3 is a better solution for most people.

 

[Acanderson34]

*Update*
I received my non rebreather mask in the mail and used it today at 10lpm and aborted an attack in about 12-15 minutes. Went through 1/4 of an E tank but small price to pay to abort one!!!

[CHfather]

Nice going!!!

If your mask has open holes in it (a circle of small holes, typically on one side, whereas the other side has typically has the same holes but with a gasket behind them), be sure to block them with your thumb as you inhale, or cover them with tape.  They let room air in as you inhale, and that reduces the effectiveness of the O2.

[jon019]

2 hours ago, Acanderson34 said:

*Update*
I received my non rebreather mask in the mail and used it today at 10lpm and aborted an attack in about 12-15 minutes. Went through 1/4 of an E tank but small price to pay to abort one!!!

.....yee-haw and sounds familiar....play with the flow to dial in. M-60 tanks doubled that abort #/tank.... and reduced visits to the O2 shop. though the E's are quite portable and easy to roll around in a cart. used to love me some the smell of a new mask....associated it with the GOOD  that was happening...

[CHTraveler]

On 11/14/2021 at 5:00 PM, Shaun brearley said:

I put an ice pack on my tempul on the side I get my attack it seems to help . I've tried the ice cube in my mouth but can't  keep it there long enough for some reason

I find putting a frozen bag of peas on my neck while using the O2 helps. Sometimes I'll put a second bag of peas on my head. I'm sure the whole scene looks rather chic to the untrained observer 

[CHTraveler]

On 11/14/2021 at 3:28 PM, spiny said:

I can't handle the pressure of the mask.

Nor can I, the band feels terrible. I luckily can tolerate simply holding the mask to my face, and I agree that inhaling through the mouth is way better with the bag--I inhale through the mouth and out the nose holding the nonrebreather mask on my face at 14 lpm, usually works within 10 minutes or so. I set an alarm to not go past 15 minutes, and only on rare occasion has it not worked, thankfully.

[CHTraveler]

On 11/18/2021 at 12:58 AM, CHfather said:

Nice going!!!

If your mask has open holes in it (a circle of small holes, typically on one side, whereas the other side has typically has the same holes but with a gasket behind them), be sure to block them with your thumb as you inhale, or cover them with tape.  They let room air in as you inhale, and that reduces the effectiveness of the O2.

I agree about the tape bit. I luckily just found a nonrebreather mask with the holes on one side already sealed and a gasket on the other--has been more effective than the the both-side gasket one I was using before. Nonrebreather masks are only $3.00 here, and I'm renting an enormous H tank for $20 per month, $40 O2 refills, delivered by a nice guy to my door. At that price, no fussing with insurance! 

Edited November 19, 2021 by CHTraveler
additional info

[Acanderson34]

2 hours ago, CHTraveler said:

I find putting a frozen bag of peas on my neck while using the O2 helps. Sometimes I'll put a second bag of peas on my head. I'm sure the whole scene looks rather chic to the untrained observer 

I use frozen clothes and while it’s freezing cold it alleviates the sharpe pains while on o2

[Acanderson34]

1 hour ago, CHTraveler said:

I agree about the tape bit. I luckily just found a nonrebreather mask with the holes on one side already sealed and a gasket on the other--has been more effective than the the both-side gasket one I was using before. Nonrebreather masks are only $3.00 here, and I'm renting an enormous H tank for $20 per month, $40 O2 refills, delivered by a nice guy to my door. At that price, no fussing with insurance! 

Wow cheap! In Canada (Ontario) at least I found out my provider does in fact have M tanks but they won’t let me pick them up myself. They charge a delivery fee and want to come in home to secure them so they don’t fall since they’re heavy I guess??

 

I just chose to keep 5 E tanks at the house right now. Insurance pays for 90% of the cost so no big deal

[Acanderson34]

Damnit….thought I was getting over my cycle with  few shadows here and there and for the past 2 hours been dealing with a bad attack….non rebreather hasn’t helped…tried the car….now back on non rebreather after chugging an energy drink….next is imitrex damnit…..so frustrating 

[Shaun brearley]

Try different breathing with mask . Try hyper - ventilating or try standing when using your o2 . Empty your lungs b4 you start on your o2 . Don't give up on it yet you will find the rite way to use it with each attack I have to switch my breathing with my attacks 

[Acanderson34]

This getting wicked…went 4 days without any attacks…not even a shadow and then today had 4 attacks. No rhyme or reason. So frustrating 

[jon019]

….those slammers out of the blue are truly frustrating. Have you gone over your list of triggers….any new meds…new foods….old foods you thought safe now….change in routine (especially sleep/naps)….weather fronts…new odors in house…allergies (my Fall allergies bad right now)…cold/flu/inflammation/infection?

Edited December 4, 2021 by jon019