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Hello,

My husband and I found this site. I joined for him, he is currently in a cycle and not able to function. He has had CH for 6-7 years now. His cycle lasts from 3 -6 months. We have found nothing to break the cycle. He is currently in his worse to date. Very intense, about 5-8 per day. Has been in it for over a week now. He currently takes 150mg lithium 2 x per day. Topiramate 200mg x 2 per day. We have oxygen, which he uses a lot. He takes  either Maxalt or Sumatriptian injection when it gets bad. The headache now has been ongoing for 60+ minutes on oxygen & maxalt. He is nauseous, has not happened before. Is there anything that we can do right now to help or break the cycle? Any help would be great.

Thank you,

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So sorry for how your husband is suffering. You ask about what you can do right now to break the cycle.  The "busting" strategy generally discussed here to break cycles would require him to be off the depakote, topamax, imitrex, maxalt, and lithium for five days, and some of those meds cannot be stopped cold turkey, they have to be tapered down. So busting might not be what you're looking for. (There are people who will tell you that all those meds are actually making things worse for him, that they are either separately or in combination causing "rebound headaches."  I wouldn't be surprised if that's true.  They sure don't seem to be helping.)

 

I can only think of two things that might be effective quickly preventively, and they're more pharmas.  One is a course of steroids, cortisone usually, which helps break cycles for some people. The other is verapamil, which helps some people as a preventive.  He could try the vitamin D3 regimen -- https://clusterbusters.org/forums/topic/1308-d3-regimen/. That sometimes reduces a cycle or even ends it fairly quickly, but it's far from a guarantee. In the long run, it's something he probably should do that will help with the next cycle.  For it to have the greatest likelihood of helping in the short run, he'd almost surely want to do some version of the "loading" that is described in that document, but that would be up to him.

 

The only thing I have to add is that you really want to be sure that his oxygen system is optimized for highest effectiveness. A high flow rate (at least 15 lpm, but 25-plus lpm is better) to support deep and continuous breathing, and the mask designed for people with CH, which is called the ClusterO2 kit: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit. This can help him get faster aborts.  Some people quickly drink down an energy shot or energy drink at the first sign of an attack, and find that it helps reduce the severity of the attack, or even sometimes abort an attack.  My only concern about this is how much stuff he already has in his system from all those drugs.

 

I wish I could be more helpful, and I hope someone else here will be.

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Thank you so much. He started the steroid pack yesterday. The O2 we have been doing all wrong. His neurologist prescribed 6 lpm. We will need to get the high flow regulator.(Monday when they are open again) I am going to get the D3 regimen today and start the loading. Hopefully this will help. Thank you so much.

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Well, 6 lpm raises more questions for me.  He does have an actual mask, right -- not things that go into his nose (called cannula)?  And I guess it must be a tank of O2, and not a machine that makes O2, called a concentrator, if you can change the regulator (it's built in on the concentrator).  Tank(s) is what you want. What size tank or tanks does he have? At a high flow rate, he will need at least one large tank, called an M tank. Two would be better. An M tank is about 3 feet high.  Often people get an E tank, which is about 2 feet high.  That ain't enough, unless they're willing to bring refills every couple of days.  Having an E tank in addition to M tanks is good, because the E is something you can take in the car.  If he has an M tank and a mask, and you don't want to wait until Monday for a regulator and you're willing to spend some money, you can get a very good regulator that will give him all the flow he needs at a Harbor Freight store. It will only fit a bigger tank -- the regulators are different for an E tank and an M tank.  This is the regulator from Harbor Freight: http://www.harborfreight.com/catalogsearch/result?q=oxygen+regulator  If you go to the website, you can check the Store Locator there to see if there's a store near you.

 

The point of higher flows is so that the reservoir bag on the mask is always full of air when he is ready to inhale -- he doesn't have to wait, or to take smaller breaths so the bag stays full.  For some people 15 lpm works okay, but many/most get better results from a regulator that goes higher.  You might want to read over this document, which has some other advice in it: https://clusterbusters.org/oxygen-information/

 

Be sure you do all of the elements of the D3 regimen -- there are reasons for everything in there.

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He does have a mask. We have a couple of the E tanks. Insurance doesn't cover them. I pay $25 to rent the regulator per month and $10 a tank. I am in there everyday replacing empty tanks.

 

He has an appointment on Monday with his Neurologist. I printed out one of the articles about the high flow O2. Will try to get a different script from her.

 

About the D3 regimen, he takes a multivitamin everyday that has Boron 150mg and Vitamin A 2500 IU. Would that be okay along with everything else on the list or do I need to get them separate? I found all the other supplements. Had a very hard time looking for the Vitamin A in such a low dose.

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Regarding the oxygen, that's nuts.  The tanks are obviously too small (and I don't know why you have to go in instead of them coming to you).  You can buy a 25 lpm regulator for an E tank online for <$30.  http://www.amazon.com/s/ref=nb_sb_ss_c_0_16?url=search-alias%3Daps&field-keywords=oxygen+regulator&sprefix=oxygen+regulator%2Caps%2C172 and http://www.ebay.com/sch/i.html?_odkw=oxygen+demand+valve&_osacat=0&_from=R40&_trksid=p2045573.m570.l1313.TR0.TRC0.H0.Xoxygen+regulator+25+lpm.TRS0&_nkw=oxygen+regulator+25+lpm&_sacat=0

 

This might be an issue for your O2 supplier, not the doctor, although I guess it was the doc who prescribed 6 lpm.  A typical prescription will read something like "O2 as needed for cluster headache, NRB mask."  Then it's up to the supplier to know what "as needed for CH" means -- or up to you to educate the supplier.

 

A lot of people with CH, probably 15% or more, use welding oxygen.  We haven't heard of anything adverse happening in the six years I've been here (but it would not be fully ethical for me to recommend it). Without insurance, it's less expensive, and the regulator fittings on all tanks are the same (like the Harbor Freight one I referred you to).  We can discuss this more if you're interested.

 

I would urge you to consider getting that CH-specific mask I linked to above.  Folks love it!  People also love the demand valve system (no bag on the mask, just press a button to release the O2 and let go of it to stop the flow).  Demand valves are generally available by prescription only, but sometimes one can find them at eBay.  There's one offered there now, but of course I can't speak to its quality.  http://www.ebay.com/sch/i.html?_odkw=oxygen+demand+mask&_osacat=0&_from=R40&_trksid=p2045573.m570.l1313.TR0.TRC0.H0.Xoxygen+demand+valve.TRS0&_nkw=oxygen+demand+valve&_sacat=0

 

I'm not expert on meeting the requirements of the D3 regimen.  I would guess that it doesn't matter where he gets the A and boron.  Maybe a more knowledgeable person will chime in.

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Sorry to hear of the high cycle crisis situation there, but glad to see you've been advised well, and are taking swift action with the high flow O2 and D3 regimen.

Hoping the steroid burst kicks in any second now to quell the attacks, and that your hub sees an instant, dramatic improvement of his ability to abort attacks in a non-toxic manner as soon as the high flow 100% O2 system is in place!

Meantime, when he uses the triptan injection, has he adopted the potentially game changing partial dose approach yet?

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We ordered the mask today.

 

He has started on the D3, 10,000 mg today. Will do that for 3 days then go to the loading and the rest of the regimen. Asking for the blood test on Monday from the Neuro.

 

Will probably order our own high flow regulator, as it would save money. As far as the O2, we will have to get them delivered. I am sure I will not be able to carry them (i am small)

 

He tried the energy shot today, and it did seem to help.

 

I can't thank you enough. This site is a wealth of information.

 

As far as the triptan shots, he thinks it was causing rebound and has stopped them for now. (so far)

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Ask the O2 company for a cart/stand, too, so you can move those big tanks around and have them safely stored.

What kind of energy shot?  Five-Hour Energy?  As a general rule, you want the ones with more caffeine (interestingly, the small shots tend to have more caffeine than the larger drinks, such as RedBull).

I would still look into Jeebs's very wise suggestion about splitting the triptan injections.  It is not simple to take apart the generic injectors, so you want to have some time to work on that and have the shot ready if he needs it, and have him knowing what he has to do to inject.  Gets easier.  Lower dosage probably = less rebound effect.

I would suggest that you might call your O2 company on Monday and ask them what your prescription says, and whether they know that for CH you need at least 15 lpm and big tanks.

He is fortunate to have such a GREAT supporter in you . . . and you are fortunate to have a guy who's willing to keep learning and trying.  Congratulations to you both.

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Thank you for saying that. But I feel I was slack, should have done the research years ago.

 

We started the D3 10,000 mg yesterday. He was able to sleep through the night. He says it is still there, but not bad enough to take meds or O2.

 

Is this a fluke? Normal? Not sure, but very thankful.

 

Will take another 10,000 mg D3 tonight with dinner.

 

Fingers crossed...

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Not normal (the apparent effect of the D3) but who knows? Nothing "normal" about this condition, and sometimes people do get very quick results.  Fingers crossed here with you.

 

Most of us have found that we trusted doctors way too long before starting to search on our own.  It's my experience (I'm also a supporter) that sometimes some people with CH become very despairing and even resistant to learning about new things that they might try, because they have had their hopes raised so often with nothing to show for it.  So you did get on it; that's the important thing.  I'm glad you found us!

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It would be so nice if the D3 had this quick of an effect, but my guess is the prednisone taper is more likely what gave him the night off (or at least is a significant contributor), so you'll want to be on guard and brace yourselves in case the CH reasserts upon taper down.

And slack, dg? NO, you are a hero in my book. :)

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Bejeeber, you were so right. He had 2 nights without and they came back today.

 

He had his appointment with the neuro today. Didn't go very well. She did write a script for the higher O2. Also ordered the blood test.(done today)

But she told him she had tried the D3 with other patients and it didn't work. Then tried to concoct her own formula, no magnesium, and 40,000 D3 for 2 months.

 

She also told him to go from 150mg Lithium x 2 per day to 300mg x 2 per day. We don't think that would be wise.

 

We are starting the loading tonight and all the other stuff along with.( no additional  lithium)

 

She told him if he did the regimen that he would get Kidney stones. (but suggested a much higher dose of the D3 ???)

 

Very disappointed in his neuro.

 

Trying to stay strong & try this.

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Jeebs is a very wise and observant guy -- though I'm sorry he seems to have been right about this.

I'd suggest calling your O2 supplier to review what the new prescription means -- including at least one M tank that they will have to replace (they're heavy).  They should give you two Ms and at least one E, plus a cart/stand.  At higher flows, your hubby is obviously going to be going through O2 more quickly.  I would recommend ordering that Harbor Freight regulator (or going to get one, if there's a store near you), if your supplier will only provide a 15 lpm regulator (or if you have to keep paying that exorbitant monthly amount for a regulator).

I think you're wise not to up the lithium, even though the current dosage is kind of low for CH treatment.  At least let's see what the D3 does, and how manageable it becomes with the O2, energy shots, and other non-pharma strategies, such as melatonin.  The typical medical recommendation for CH is that lithium should only be prescribed for chronic CH, because of its side effects and because severe rebound headaches are common when lithium is withdrawn. Has he ever taken verapamil or another blood pressure med as a preventive?  It would be surprising to go with lithium without first having tried verap.

There are risks associated with the D3 regimen, if it is overdone (way overdone).  The guy who developed it, whose screen name is Batch, has examined its ins and outs for several years, with lots of data from actual users.  Batch is just about the nicest and most generous person you could deal with. I'm going to send you his email address in a PM, and you should really feel free to contact him with any questions (like, why the magnesium, or what's the risk of kidney stones). He will write back to you promptly, I'm sure.

I'm pinning some big hopes on the O2.  It can take awhile for people to really figure out how it will work best for them. I think you said you ordered the ClusterO2 Kit, which was formerly called the O2ptimask.  Here's a video about how to assemble it and how to use it. 

 

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We ordered the o2ptimask. It will be here on Wed.

 

Contacted my O2 supplier. They do not carry the big tanks, so they have ordered them for me. Will be here in 3-5 days. Till then we deal with the small ones.

 

He can't take the verapamil, his normal BP is 90/50 on a regular basis, sometimes lower. Verapamil would be dangerous for him to take.

 

I do have him taking Melatonin at night, 9mg. ( i have taken it for years to help me get to sleep)

 

I  contacted Batch the other day and am waiting to hear back from him.

 

We did 2 days of the 10,000mg D3 only. Started the full regimen & loading tonight.

 

I am so thankful for everyone's information. I can't thank you enough. I hope he can find some relief from this monster.

 

PS, that video is so helpful when we get the mask. Thank you so much!!!

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They have ordered the big 3 foot tall O2 tanks for me (will be in next week). The regulators they carry (to rent) go up to 15Lpm. He is currently using 6lpm. His mask arrived today. I have found a regulator like the one we use that goes to 15lpm for about $35 on Ebay. Would that be okay? Some look really different and I am not sure if they will fit the tanks we get.

 

On a better note. We started 10,000 D3 for 2 days. Then went to the full D3 regimen. On the 1st 2 days of 10,000 he got 2 headaches a day. None through the night (which has been the worst ones) Has been able to sleep in bed with me instead of in his recliner. Today as of 2:30pm, he had none today. 2 Days on full D3 Regimen. It is making a difference. Too soon to say if it will make it go away. He is on his last day tomorrow of the steroid taper.

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The big tanks and the smaller tanks use different kinds of regulators (the small tanks use a CGA 870 and the big tanks use a CGA 540).  The welding regulator at Harbor Freight that I linked you to is a CGA 540.  I'd recommend getting that one for next week.  For the smaller tank(s) you now have, why not get one that goes up to 25lpm?  Here's an inexpensive one at amazon: http://www.amazon.com/Medline-Industries-HCS8725M-Oxygen-Regulator/dp/B00BLQKKQQ/ref=sr_1_1?ie=UTF8&qid=1458161494&sr=8-1&keywords=oxygen+regulator+25lpm  You can get it shipped for tomorrow for some extra $.  If the O2 supplier will let you keep the 15 lpm one for a couple of days, I'd do that (15 might very well be enough for him with the fancy mask) and order the amazon one.  Eventually, he'll be doing most of his huffing from the big tanks, but the smaller one is good for car/office/etc.

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I don't have the 15 regulator yet. I have to turn in the low flow one that I have or they will charge me an additional $25. I showed him the Harbor Freight one and he said it looks complicated.  The O2 supply company told me the big tank is an MM. 3 foot tall.

 

He works with high voltage electricity on a construction site and he is not able to bring O2 to his job site. If he did it would have to stay in his vehicle which is a 15 minute walk from where he is working.

 

If the regulators are diiferent size, they probably don't have that either and will have to order it. Another delay with the big tank.

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The Harbor Freight regulator isn't complicated.  The gauges are irrelevant since you're not using it for welding.  You screw it onto the tank with a big wrench, attach the mask hose to the barbed fitting, and use the wingnut-looking thing in the center to adjust the flow.  The only slightly complicated thing about it is that it doesn't have clickable lpm settings like the ones on your current regulator.  It doesn't have any lpm settings -- you just turn that thing in the center until you get the flow you want. I've never heard of anyone finding it anything but simple to use after their first experience with it.  Not having clickable lpm settings is an advantage because then you can set the flow pretty much as high as you want.  This is one of the few welding regulators that comes with a barbed fitting that you can attach a mask to; with most of the others, you have to buy an adapter for that.  However, I'm sure there must be CGA 540 medical regulators for sale at amazon, eBay, or elsewhere that will of course come with that fitting for the mask and that will go up to 25 lpm. 

 

Regarding the smaller tank, I guess you could roll the dice and hope he doesn't need O2 until you get that MM tank. It's not clear to me whether you still have a tank but will have to turn in the regulator. If that's the case, as I mentioned you can get a 25 lpm regulator that will fit that smaller tank delivered pretty quickly.

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We currently have 3 E tanks( 2 foot tall) and the low flow regulator.

 

Called a bunch of places about the bigger tanks. I can't find anyone who carries them or is in our area.

We might have to bite the bullet and just use the E tanks.

I can get them everyday Mon-Fri) , as many as I need.($10 a piece, but you can't put a price on relief)

Set the mask up, need more O2 flow. Fills slowly,But we understand why it works so well.

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Good on the D3.  Seems like everybody with CH is low -- in fact, most of the population is low.  If I'm remembering right, Batch's target is 85 (you should not take my word for that, though).

So, if you have access to an unlimited supply of E tanks at $10/replacement, I think I would just get a 25 lpm 870 regulator overnighted so he has O2 in the short run, unless, as I've said, he's doing so much better that it's not urgent.  As Jeebs has said, the prednisone can clear up a CH cycle, or reduce the severity of one, or the CH can come back with a vengeance once the taper is ended.  As we've discussed, if you are the one who has to transport the tanks, an MM will be a whole different ballgame than an E. 

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CHfather, thank you so much! Ordered the O2 regulator from Amazon for the E tanks.

 

He has the mask and the 25lpm regulator. He has developed a technique for using the mask to minimize the O2 from being wasted.

 

D3 therapy has seemed to help. Still having them, but not as frequently. Maybe this cluster will be shorter than most.

 

Thank you all so much!

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>>He has developed a technique for using the mask to minimize the O2 from being wasted.<<    This is a little puzzling to me. The O2 goes into the bag and he inhales it.  If he's running it at 25lpm, some might leak out the back of the mask connection (as shown in that video I linked you to), but it's hard for me to think of how O2 could be "wasted" in normal use.  He doesn't have to set the regulator at 25 -- he wants to have the flow rate that allows him to inhale as much as he wants as soon as he's ready, without waiting for the bag to fill.  For him, that might be 15, or more, or less.  Anyway . . . very glad that things are getting better!!!!

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