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kmom

please help me help my son

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My son is 24. Has been getting these every fall for about 4 years. This fund is really bad. Can't get any Dr to help us. Maybe because he is a college student & has no insurance. PLEASE what can I do to help him

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Hi Kmom

My initial advice would be to procure a welding oxygen set up for him.....mask runs about $30, regulator from harbor freight for around $50, and then lease an m tank from welding supply...just don't let them know he's going to breathe it!  Will be a life changer for him!!

Many folks find success using RC seeds as a busting agent...you'll find all pertinent info in the cluster buster files.

Welcome to the community and good luck!!

Dallas Denny

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What the illustrious Dallas Denny said. Those RC seeds are legal to purchase and possess, and welding O2 (which is the same as medical O2) is widely used by CH'ers in the US.

Also, some folks here have recently had success ordering psilocybin truffles from the  Netherlands (the amount of associated legal risk involved is unknown to me though).

Neither you nor your son are alone - I bet CHfather will relate to your situation, and he, as one of the most informed people on the planet regarding the practicalities of how to most effectively fight off CH, may even be along with some good ideas for you too.  :)

For right now today, your son could always try one of the instant "freebie" abortive methods. Forgive me, but I'm just going to copy/paste here from a post I made on that subject yesterday:

---------------

Cold air therapy as an abortive can work. You have to catch it at onset though. RUN to the car, turn the car on and BLAST the air conditioner at it's coldest, put your nose right up to the super cold air coming out of the vent and breathe deeply, hyperventilate even. A resulting ice cream type headache sensation can be an indicator that you're on the right track. An abort can potentially be had in 10 min. or so. Adjuncts to this include holding ice cubes in the mouth pressed against the roof of the mouth on the CH side.

For some exercise is a trigger (and actually cold air can be for some too, dangit). For the rest of us though, it can be an abortive. I'm talking a blast of super vigorous sprint 'til you drop sort of exercise (if this type of exertion doesn't present a health risk for the particular CH'er individual).

------------------

If your son were to down an energy drink or shot that contains plenty of both caffeine and taurine (such as 5 hour Energy, Red Bull, Monster) right before one of these abortive methods, his results may be all the better, as some CH'ers report being able to abort or lessen the severity of an attack with an energy shot/drink alone.

You were smart to come here kmom - this is where people so often really turn a corner on their CH, sometimes through a supporter such as you.  :)

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Thank you so much for the information.  I have already learned so much from this website and welcome all the advise from people who finally understand.  I have felt so helpless but now can focus on actually figuring out what will actually work for him.  I'm sorry but every doctor we have seen has been totally useless (or perhaps they just think we are crazy).  I want to kick CH A**

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kmom,

Has he been officially diagnosed with CH? 

Luckily, as the great duo Denny and Jeebs have told you, there's a lot that can be done without doctors.  Sounds like money is tight (normally, he'd be covered by your/your family's medical insurance, wouldn't he? At least if you're in the US.), so you don't want to be spending $ on oxygen unless he has CH (doesn't really help other headache conditions).  If he does have CH, oxygen is your first priority.  Denny has told you the basics of what you need to do.  If you're thinking of doing a welding O2 system, we can guide you through that process. (You could look at the CB Oxygen Page under the black and white MENU tab on the left side of the page for more info.)

The basics about the RC seeds mentioned by Denny are here (in the ClusterBuster Files section, as he said): https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974  Read the other numbered files there, particularly #s 1, 3, and 6.

A few things that haven't been mentioned:

Licorice root works well for some people: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068

The "Vitamin D3" regimen has helped many: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

Melatonin at night helps many (most people start at 6-9mg. and work up).

AVOID FOODS with MSG (monosodium glutamate), which are staples of a typical college student's diet (Ramen noodle things, like Cup o' Noodles; flavored chips; and many other things).

Keep talking to us . . .

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Dear kmom,

Sorry to hear of your trouble. Could you please state where in the world he is- I presume, but do not know, that he is in the US. If so which state/town/city.

It is important that a correct diagnosis has been made, even before venturing into treatment. Was he diagnosed by a physician? by a neurologist?

With respect,

BostonHeadacheDoc

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Thank you all for responses. He has not been "officially diagnosed. I was actually put on this trail by a resident Dr in the ER who had them. This was a few years back.

For some reason he didn't get them last year but now back with a vegence. We live north of Detroit & a victim of the massive layoffs here. Working but no insurance at the moment. He did see a Dr who gave imitrex but he hates them & says he can't really go to school after taking. Plan on getting him in next week see about oxygen script see how that works out. He should be about done with his cycle based on previous experience. Just trying to break it now, he's really at the edge & can't function for school & work. If mm will work, & may be why he didn't get them last year then that's the path we are going down. Just trying to get all the info I can. I was able to get a few O2 tanks to get him thru the last week but now he's out again & starting to panic. I couldn't believe the hassle they gave me just to buy a mask without a prescription, this is just crazy. They even gave him a hard time when he tried to get a tank from welding supply. He told them it was for work but he's not a very good liar so he just left. Keep hitting dead ends everywhere......crazy.

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Kmom, my son also has CH and is suffering from them now.  We've tried many drugs prescribed by his neurologist but with bad results. Oxygen has been the best treatment so far.  We have a huge tank in his room and a couple of smaller tanks. He take hydrocodone for pain with limited success. We are looking into other options that have been suggested on this board. All we can do is try new things, hope and pray. There are new things on the horizon. You are not alone.

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kmom,

While still saying that an official diagnosis would be a very good idea, if only to rule out other possible conditions, a couple of responses.  If the oxygen tanks you obtained for your son were welding oxygen tanks, you can probably have them "refilled" (actually, they just usually replace your empty tank with a full one) at the place where they were purchased. There's a lot I don't know about this. It might be possible to take them to any place that sells welding O2 and have them refilled/replaced.  I don't think they care whether the tanks were originally theirs or not--but I don't know for sure. And if they're medical oxygen tanks, I just don't know how easy a refill/exchange would be.  Maybe someone else here does.

Most people who buy welding O2 don't get any questions. I remember one person here saying that he was asked, "What are you going to use it for?" and his answer, "Welding," was sufficient.  I would guess that acting like you know what you're doing would be sufficient, and it seems to me that the key to that would be asking for a specific tank size. If your son doesn't get many attacks per day, and if he handles them quickly with O2, and if his cycle is about to end, I would guess that a 60 or 80 cubic foot tank would be sufficient. So maybe asking for a specific tank size is enough to convey legitimacy.  I know a person who decided to go the other way (although it turned out that nobody asked her any questions). She decided to say something (if asked) along the lines of "My son-in-law is doing some welding at their new house and he asked me to pick up a sixty cubic foot tank of oxygen." That way, she could plead ignorance about any follow-up questions.

I gather you are suggesting that maybe your son was using psychedelics last year and that might be why he missed his cycle.  As I understand it, that's the very way the usefulness of psilocybin was discovered -- a guy whose CH went into remission during his youthful years of experimentation, and then started again after he stopped experimenting. So maybe, if I'm reading you right, you're onto something there.

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All we can do is try new things, hope and pray.
  While you're considering busting . . .

Have you/he tried licorice root?  https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068

  Is he doing the D3 thing?  https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

  Energy shots or energy drinks at the first sign of an attack (just before O2)?

  Silver bullet vibrator? Thread: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1369049582  This has been very helpful for several people who have tried it.  Very inexpensive at amazon.com.

I'm a supporter, too (daughter). We keep searching. Hang in there.

 

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I've pondered this having to lie to get welding 02 thing, and I haven't tried it, but one idea was, if asked, say "I have a friend who needs 02 for welding", which as a stand alone statement is technically true for all of us (I bet everyone's friend Spiny here uses 02 for welding - well I know she uses it for a bad ass cutting torch anyway).

I guess the trick would be in your mind to just say it as if you were starting a new line of conversation, not replying to a specific question.  :D

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K Mom,

If your son is registered at a college or university, they should have a health center. If you google "cluster headache fact sheet" one of the first few hits should begin with "crisiscenterblog"

Give this to your son and the folks at the health center. I would be pleased to contact them if it would help.

Larry

carrolltoncounselongdotcom

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Thank you all.  We are still trying to work it out but appreciate all the help.  He actually had a good day yesterday & was hoping it was on its way out but today the damn thing is back.  It actually popped into my mind the other day that they do have a health center at the college. I was wondering if they would allow him to go there & get oxygen when needed...something to check into.

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Dear kmom,

There are useful suggestions in this thread from very knowledgeable people.

I do not think I saw steroids mentioned. The quickest way out of a cluster period (although it may be temporary) is a course of oral steroids like prednisone. The same thing you would get for an asthma attack or hives. Mostly they are well tolerated and safe, for short courses. Many on the board have used this medication. Mostly, people do well. His student health services could even prescribe this. Please keep us updated,

Regards,

BostonHeadacheDoc

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