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Well Crap, They're Back


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After 2 and a half years of being cluster free, I thought they were gone for good this time. Alas I was incorrect, because this morning I got a cluster and I'm guessing that was the start of a new series because I've never just gotten ONE cluster (thought hope springs eternal).

I've got a decent supply of Maxalt and a couple other meds that I've been stockpiling since my last bout, but I'm going to see the doctor in early July and I wanted to get my ducks in a row before doing so. Can anyone tell me what kinda drugs I should be asking for, just in case my doctor doesn't know about them already? I'm just glad to have a doctor who actually agrees that clusters are real (some have not) so I don't expect him to be up on the latest RX for clusters.

Any suggestions anyone may have would be greatly appreciated. Maxalt still works but I'm wondering if maybe there's something that might work even better.

Thanks in advance for any thoughts anyone may have.

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There's always the welding O2 route. Others here can explain. I ran into the same problem with several insurance companies so I got to know the manager of the O2 shop and we worked out a deal for self pay (GOTTA have the script). A few yrs ago but was $14/e tank....a little more for M's. I bought the regulator, tank caddy,  and NON REBREATHER (very important) mask online ….

Have you read or tried the Vit D3 regimen...very successful for many....

Energy drinks with at least 100 mg caffeine and 1500 mg taurine at first sign of hit...drank COLD and fast was really helpful...

My abort of last resort is Zomig Nasal spray (5 mg)…99% success rate....damn expensive tho...and it's usually a fight with insurance.

Best

Jon

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G'afternoon Snaithbert!

I'm with jon....chances are slim that ins will cover O2, and it IS expensive out of pocket.....I had a little better deal than jon at $12/E tank......but I was going thru a full tank every 24 hours so was driving 1/2 way across Dallas twice a week!

Then came welding oxygen!!  $150 cylinder deposit, $6/mo cylinder lease, and $18/refill for a large ( 9" dia x 48" tall) cylinder.....added a weld oz regulator from Harbor Freight for $50 (they've discontinued that model and the one they carry now is around $70), and a clusterO2mask from the clusterheadaches.com store for $30.....(heavy as hell to shlepp around but in a 20 plus week cycle I used 2 1/2 tanks and only 1 Trex injection and no other big pharma meds! 

When I retired and moved to okieland a few years back my local welding shop didn't lease tanks so I had to buy the same size tank outright for $300 and refills cost me $21!

Been huffin it now for 9 years with no ill effects....just don't let the welding supply folks know you intend to breathe it!

Dallas Denny

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Unless you're receiving insurance from a government agency (Medicare, VA, Medicaid), your insurance should cover it.  As Jon' and 'Denny say, welding is a very viable alternative.  You gotta have O2!!

You ask about prescription meds, so starting there (nothing new that I know of) . . . Verapamil is commonly prescribed as a preventive. Short-acting (not timed-release) is better.  Prescriptions can go up to 960 mg/day or sometimes more before they are effective; most doctors don't prescribe that. You should be monitored as you start it and as you ramp up.  I'm always puzzled about Maxalt.  Is it just in pill form? Pills usually don't work well, but you say the Maxalt is effective.  Nasal spray and injections generally work more reliably and faster.  Many people are convinced that triptans extend cycles and make attacks worse, so getting O2 and using energy shots and other abortive strategies is pretty important.  Among other "home-remedy" abortives are sucking ice water through a straw so it's hitting the roof of your mouth (to cause "brain freeze"); deeply breathing very cold air from an air conditioner or freezer; and standing in a bathtub of very hot water.

 Here's a link to info about the D3: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708  I'm gonna say that 90% of people who do the regimen correctly get some relief from it, and I'd say maybe two-thirds, or even more, get exceptional relief. It is not likely to help you right away, but the sooner you start it, the sooner it will help. There's also a thread here about vitamin B1 being very helpful: https://clusterbusters.org/forums/topic/5417-b1-oral-high-dose-thiamine/ 

 

Edited by CHfather
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As far as the O2 ad insurance go I have fought with just about every oxygen supply place in my county. I have found that with MY insurance company they charge you more for the monthly tank rentals and refills then paying on your own. I found a small medical supply store that would sell wheelchairs, walkers and things like that that would give me E tanks for 10 bucks each if I paid on my own but that guy was unreliable and about an hour drive to his place. I  found a few places that flat out said no to cluster peopel and finally found on that will deliver to my house. I currently have 3 M60 tanks and 12 E tanks. The place I get refills from only knows about 2 M60's and 4 E tanks and will give me 3 refills a month on the M60 for 85 bucks and 15 each E tank, all paid without insurance. If I were to use inc it would cost over 300 for the same service. I just called and talked to the billing department and worked it all out.  this is a larger company, part of QMES company that serves from New York to Virginia. I dont know what area you are located in but maybe they can give you a name of a place near you? 

Getting oxygen was one of the hardest things that I had to do so far dealing with clusters but by far the most rewarding as far as pain relief. I was taking 3 or 4 shots a day and eating pills like candy before and now I just down a 5hr drink and put the mask on. Dont get me wrong, I still get a good one about once a month that I want to put my head through a wall with but they are much more manageable now. In addition to the O2 I also do the D3 and bust with MM to help manage things. I have not yet found that sweet combination that gets me pain free for any length of time but everything does help a little and when it is all said and done... I am still here so something is helping. 

Here is the link to the supply company I use, Like I said I don't know if you are in the coverage area but maybe they can point you in the right direction.

http://www.qmes.com/

 

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Wow, this is all fantastic info, thank you all very kindly.

CHfather, Maxalt seems to work and it works quickly because it's the kinda thing where it dissolves on your tongue, which I assume gets it into your system faster. Last night I got another attack and was forced to take Maxalt in the solid pill form and it definitely took longer to work. Though thankfully it did work, so I guess I can't complain. I'm wondering if crushing up the pill before hand would make it work faster but I'm not quite sure how to go about crushing a pill.

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It's my understanding that crushing pills is not a good idea.  They're definitely insistent in the Maxalt product instructions about not crushing, breaking, or chewing the solid tablets.

Do you mind saying how long it takes you to abort with the orally disintegrating one and with the solid one?  Probably "it depends" to some extent -- how quick you take it after an attack has started, etc. But in general.

I thought of another non-pharma "treatment" that has helped more than a few people.  Batch (inventor of the D3 regimen and all-around CH hero) has noticed a correlation between high pollen periods and CH attacks.  He recommends Benadryl, taken 25mg 3x/day and 50mg at night.  Can make you kinda groggy, of course.  And that also reminds me that some folks find that melatonin taken at night, starting around 9mg and working up, helps with nighttime attacks.  Don't take all that Benadryl and all that melatonin at night together though.  That would be beyond groggy. 

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The anti-inflammatory regimen CH preventative treatment protocol costs roughly 50 cents a day...  Over 800 CHers have started this regimen since December of 2010.  80% of them are loving life again with a significant reduction in CH frequency (>75%) and 50% experience a complete cessation of CH symptoms all in the first 30 days. 

You can download a copy of this treatment protocol with a complete list of supplements and the "how to" at the following VitaminDWiki link:

http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

Take care and please keep us posted.

V/R, Batch

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