How to help my Adam

[HOPEFUL]

Hi, I am mum to Adam who is only 18 and has suffered from CH for two years. Our local hosp diagnosed very quickly on first time needed to attend A & E. It breaks my heart to see him when the biggies hit as feel so useless. As I type I am in tears. He is not on any meds. I read your inputs on seeds, mushrooms and 02 but get really scared as I dont know how using these will affect him/ Even the 02 can damage lungs? How can I help my son but do the least harm to him?

[Zed]

I began my clusterheadaches a few years before your son had them. I am one of the few people who had gone through every one of their cycles without any medical treatments or medications. This went on from 11-26 years old and it was the most painful memory throughout those years of my life. My parents were getting divorced at the time and never really went out of the way to bring me to the proper doctors. Ironically my mother had cluster headaches but she has so many other thyroid issues that after having her thyroid burnt out she started having the cycles ever 2 years and for shorter intervals. Then she had menopause and it was 4 years without any headaches so she thought she was in the clear UNTIL last week.

Oddly her Cycle started on Nov 21st and mine on the 23rd of November. Now I am the one educating her on Imitrex but she still refuses to take it.

   What I am trying to say is please get your son treatment if the doctor agrees it would be safe.  Since a kind fellow CH sufferer gave ma a few imitrex nasal sprays 4 years ago I finally believed there was relief for this monster. When trying to understand the pain the best way to envision it would be an "Ice Cream Headache" at the peak of it's pain that will not subside for 30-45 minutes with the feeling your teeth are pushing themselves out through the gums and a touch of leprachaun behind your eye stabbing you with a mini sword. 4-5 of these a day then causes mental drainage and the inability to work out of lethargy and fear of sleep.

  You know how in Nightmare on Elm Street all the teens are afraid to fall asleep because Freddy will get them? It is the same thing except Freddy does not kill you and only stabs you for 45 minutes nearly night.

Imitrex works for me. It aborts all of my headaches as long as it is not in pill form. I will say though that this is the first time I have ever tried to RC Seed treatment and I cannot believe I am saying this but it is working

   As of now my headache cycle is all but busted. THIS HAS NEVER HAPPENED FOR ME IN ALL MY CYCLES. Even with imitrex I have always had to ride out the 6 weeks. My cycle appears to be completely halted now after only 9 days.

    I only tried this method finally because I am going to the Caribbean in 2 weeks and did not want to have it ruined by a cycle and fusing with Imitrex.

  Best of luck. I wish my mother had gotten me Imitrex as a child but she never did any research. I have never used oxygen but from what I read most with CH over the years swear buy it for relief and abortion. I am sure it works.

[Jsmacks]

Hey Hopeful, welcome to to CB.com and we know exactly the pain your son is feeling. My CH started at age 16, and my parents didn't know how to help me at all. I endured them age 24 trying desperately to use supplements to curb the pain. Sometimes I think it did, other times I don't think they did.

I've not heard stories of O2 damaging lungs. I just started with O2, and it worked miracles.

On the homepage of clusterbusters.com, scroll down to the board labeled "cluster files". Read all you can on RC seeds, (LSA), and also Mushrooms. These topics are labled "Mushroom FAQ's" and "LSA Faqs".

One of these methods of treatment are VERY likely to help your son.

How can I help my son but do the least harm to him? 

I did some research on the toxicity of Psilocybin - the chemical inside of mushrooms. Apparently on the toxicty scale, they are no where near as toxic as nicotine, or aspirin.

To start, read those other files, and be sure to ask any questions that you may have. Getting set up with oxygen would be very important as you can then abort most of your son's painful attacks.

[HOPEFUL]

Thank you all so much for your replies will invesigate all options

[TakinitEZ]

Hopeful, There are a number of things that will help that are easily available to you. The first thing to consider are triggers. These are things to avoid that are known to trigger a cluster attack. Everyone is different, but typical triggers include meats preserved with nitrates - salami, ham, bacon, etc., another is alcohol - drinking or even smelling it, fuel type smells - petrol, fumes, exhaust. Make sure he avoids these and other triggers.

Second, find a good abortive. Abortives are used at the first sign of an attack coming on. The most commonly effective abortives are caffeine and taurine - found in Red Bull and other energy drinks, Oxygen - this is very safe, and medications - Imitrex by injection or nasal spray is the most effective, Benadryl also works for some, and finally Exedrin with caffeiine can work for some. My favorites are Oxygen and Imitrex.

Oxygen can be purchased relatively inexpensively. If you do not have a prescription, welders oxygen can be used. The key is to use a non rebreather mask at at least 15LPM.

Finally, you need to consider preventives. These are intended to prevent the cluster attacks from occuring or at least reduce their verocity. There are no medications specific to CH, so many medications indicated for other illnesses are used. The most effective (for the most people) are verapamil and lithium. These require prescription. There are other medications that work for some.

Another path of prevention is what this site is focused on - busting the cycle of cluster headaches through the use of alternative medicines. LSD, magic mushrooms, and natural substances containing the active ingredient in LSD (LSA) are used to break the cycle. Please read the posts in the "Clusterbuster Files" section to learn more.

It is very important that your son see a headache specialist in order to get proper medical treatment. Many doctors, even neurologists may have never seen CH and can run down various paths of treatment for weeks or months before helping him. A headache specialist is more likely to get to the right diagnosis very quickly and therefore the right path of prevention.

-T

[alleyoop]

Hi Hopeful, and welcome to our forum.  I'm sorry that you had the need to find us, but glad that you did.  The information you will find here will be immensely invaluable to you and Adam. 

As with all forums, you need to disseminate the information you find here.  For example, some swear by Imitrex (or Imitran), but others of us have had some bad experiences with this triptan.  There is scant evidence, as you can read from my attachment, but there is a consensus that it causes rebounds and may extend a cycle.

Oxygen is by far your best and safest abortive.  If you mouse over the "Menu" button at the top left hand side of this page, you can click on "ch.com Oxygen Page" and find all you need to know about what you will need and how to use 02.

As others have said, read about the alternatives under "Clusterbusters Files," and ask all the questions you want.  That's what we are here for.  You may not get an answer right away (especially on weekends), but someone will be along who can answer any questions you may have.

Best,

Bob

Subcutaneous_Sumatriptan_and_rebounds.pdf

[Bejeeber]

Agreed that O2 is absolutely the safest abortive. It can be very effective too. Banish any concerns about lung damage - they are misplaced (just avoid using a "bubbler" with  O2 flow above 15 LPM).

And Imitrex is controversial to be sure. Personally I've used it since it came out, and used it occasionally during my last episode when the O2 wasn't available or effective enough. This was a 2.5 month episode where I was able to prevent or abort every single attack - a pretty rare accomplishment, but I've been at it 30+ years, did a ton of research, and also got lucky.

My hope now is to not have to even mess with abortives anymore, now that I'm busting with mushrooms as a preventative.

I'd suggest putting all your primary focus on getting high flow/non rebreather O2 as outlined here: http://www.clusterheadaches.com/O2/index.html and then moving on to preventative decisions after that. Typically we have to order a high flow O2 regulator and an "optimask" online in order to acquire an O2 system that will be most effective at aborting attacks quickly, so that's something to hop on ASAP.

[Edit:] I've been thinking about this, and although most of us have followed the directive at the link supplied to put together hi flow regulator and optimask components, there's another, simpler, reportedly more surefire way to go that is briefly mentioned in the link: a "demand valve" system. it is assumed that people don't want to spend the extra money on one, but the highest CH O2 guru, "Batch" uses one, and they apparently can lend themselves more to portability too. Giussepi who is a very regular contributor over at the ch.com message board was a patrol police officer for many years, and would carry an E tank with demand valve in his cruiser. If an attack hit he'd just pull over, breathe the O2 for 5 minutes, then he'd be right back on patrol. Wanted to mention that in case you can afford one, because I'm getting the impression that it is an option that is too often overlooked.

Your son is going through some hellish times to be sure, with a level of pain that most people will fortunately never know, but with a wonderful mom like you assisting he'll be just fine - really, and especially encouraging is the fact that we're figuring out much better ways to deal with these nowadays.

His life'll be good. 

[Bonkers]

Hi HOPEFUL,

So sorry you and your son Adam have to deal with this awful affliction. You'll find others on this board who are in similar situations with their children. Clustermom13 has a 19-year-old son. If you read back through her posts you'll find that her situation was almost exactly the same as yours a year ago. Her son Andrew is working part-time, going back to school and is in the process of reclaiming his life. My son Michael is 26. He was an episodic at 12 and became chronic after an auto accident at 19. He came very close to ending it all before we found this website. He now has more pain-free (PF) time than headache (HA) time, is working part-time and planning to return to school.

Even though your local hospital diagnosed Adam with CH it is still important that he see a headache specialist or a neurologist specialized in HAs who treats patients with CH. Before his appointment, it's important that you learn enough about CH yourself that you can evaluate his doctor. You will learn very quickly if a doctor immediately prescribes steroids and narcotics that your next move should be to make a bee-line outta there.

In addition to reading as much as you can in the ClusterBuster Files on this website, you should also visit CH.com, http://www.clusterheadaches.com/wwwboard2/index.html, the sister site to this one. There you will learn about the more traditional methods of dealing with this disease - and all of their methods are legal. On both sites, I encourage you to ask questions about anything you don't understand or are troubled with. Everyone on both sites is anxious to help you.

I know you're in a very bad place right now and I'm truly sorry. Many of us have been exactly where you are now. Give it a month.

Ron

p.s. - There are a couple of very good videos available that discuss the current state of CH affairs and provide an outline of clusterbusting methods:

and

[tingeling]

Hi

Welcome to you and your son.

iYou have got alot of info, i can`t say much more. But i want to tell you i got a new life after i found this place. The people in here are just wonderful, it`s the best support you can get, and also theyre knowlegde about CH and treating CH are something special, they all learned from experiencing it themself.

So you can be hopeful now Ask what you want and seek support when you need it, we`re here

Painfree wishes from me

[CHfather]

Hi Hopeful, I'm quite new here myself but I already consider it a home--and a godsend.

This week I've been sitting up much of the night with my daughter, in her thirties, as she endures some nasty CH assaults. I massage her back and her neck, hold the ice gently on or near her temple where the pain is worst, distract her when she's ready to try to think about something else besides the pain, pace with her . . . and of course it's agonizing for a parent, but thank heaven you are there for your son.  We don't yet have a proper oxygen setup here, but we will soon, and I'm hoping that will work as well for her as it does for so many others.  And we're doing other things recommended here.  Hopeful is the right attitude, because you WILL find something that works.  The good people here won't let you down or leave your side until you do.

Your son will reach daylight in terms of his own suffering, no question about it, one way or another. If it's not through things recommended here, it will be from another kind of medical breakthrough. Brain imaging is becoming more and more effective, for example, and the mechanism of this darn affliction will be found and made treatable. Or maybe it'll be botox, just authorized by the FDA for use on headaches and shown to be effective in some cluster sufferers.  There WILL be something.

I'd like to add something that's just a personal observation. In my own life I have been through some very extended periods of very extreme pain. Now my daughter is going through worse pain, though not as constant or as seemingly unending as mine was.  Neither of us would want this or volunteer for it, but there is no question it has made both of us better people, much more capable of empathy for others who are suffering in any way, physically or emotionally or both. You only have to read around this board to see that quality in practically everyone here. I know I cry with the people here who are suffering, and celebrate with those who are busting free. I would also say that both my daughter and I appreciate pain-free life (or even limited-pain life) more than most people do.  I play golf now, after many years when I couldn't walk from the living room to the kitchen without stopping along the way to recover from the pain. I'll be out on the course with guys who are cursing and complaining and miserable because they hit a bad shot or two. They sometimes ask me why I'm so calm, and I answer something like "Because I am walking outside on a beautiful day, and I'm so grateful for that. What do I care what number I'm going to write down on a piece of paper after this hole is over?"  My daughter frequently remarks to me about how much more she appreciates life's blessings now.

So again, I'm not looking for fake silver linings, but stating what I believe to be facts. First, that your son will get the help he needs to at least manage this thing, or to completely beat it. And second that he will be a better person for it in the end, in ways that will make every single day of the long rest of his life (his life expectancy now is well over a hundred years, thanks to medical science) richer and brighter and better. Forgive me for the speech, but it's what I think.

Jerry

[alleyoop]

Great post Jerry.

Best,

Bob

[TakinitEZ]

Jerry, That's a good message for all of us. Thank you. What really hit home for me was your thought about golfing, something I really miss. -Chris

[CHfather]

I learned something else from that golf experience, which that only about one person in a hundred actually gives a crap about your (one's) pain experience.  Sometimes my answer to the "Why so calm?" question goes more like "Well, there was a time in my life when, for about a year and a half, I couldn't walk more than very, very short distances or sit down at all. So I'm just happy to be out here walking in the sunshine . . ."  You'd think that might be interesting to people, but by far the two most typical responses are (1) "Oh." and (2) "I once had a hangnail that really hurt."  Of course, C'heads and those who love them already know all this, having heard the "Sometimes I get bad headaches too" or "My friend cures her migraines by eating geranium seeds"-type stories way too often. I actually think this is basically true of 99 percent of doctors, too -- they have no freakin' idea about real pain; it's just a business to them.

I think fairly often about how much better the world would be if everyone actually had to experience an episode of a variety of intense kinds of pain just once in their lives: a CH attack, some AVN, a little pancreatitis, a war wound . . .

But here . . . everyone understands, and that really changes everything.

[Hipshot]

Hi there CH Father.

I just wanted to chime in and say that I like you. I like the way you think. I admire the way you look after your daughter.

If the world was ruled by cluster heads or fathers and mothers of clusterheads there would be no wars! I bet Adams mother would agree.

I know your kids appreciate the folks help in trying to alleviate their suffering.

Dan

[Dallas Denny]

Hi there CH Father.

I just wanted to chime in and say that I like you. I like the way you think. I admire the way you look after your daughter. 

I'll second that notion Dan!!  Good on ya CH Father and Welcome to the community!!

Dallas Denny

[Guest]

Cool thread. You guys are all so cool ya make me freeze.

which that only about one person in a hundred actually gives a crap about your (one's) pain experience.

I think your numbers are hopeful. Maybe in a thousand. People by nature are self centered. I wouldn't wish a CH attack on anyone. But I understand the sentiment.

some reading for the newbies

http://www.miqel.com/clusterheadaches/clusterheadaches.html

http://www.plainboard.com/ch/chtherapy.pdf

the more you know the more you will relax.

02,02,02

the bb

[Napa1026]

HOPEFUL, have you also been to the Clusterheadaches.com site? There is great info on 02 there. It breaks my heart to see that you are typing in tears. Many of us feel your pain, as you can see from the above posts. If you go to the CH.com site, be sure to go to the home page to start.

Welcome to the board. As an above post stated, you will have to sift through the information. Imitrex for many of us works at first, then rebound headaches all day long.

02 is a great place to start, it is the most effective way to abort an attack. 02 has to be used correctly at a high flow rate and it will, for most, abort the attack within 10-15 minutes.

Great posts everyone. Very thoughtful and caring. I love this place!

Be well, Steve

[clustermom13]

HOPEFUL,

Well I have already been introduced to you by my good friend, Ron.  He forgot to mention my nickname "feisty".  I earned it by fighting for my kid.  Just like you will.

Having found this group you can obtain the help you need to be able to help him.  The advice, friendship and support of the people here will get you through.  A young life, especially, is so sad to stand by and watch wasted and ruined by this terrible disease.  But it doesn't have to be this way any more.  You have the power to help him now.

There is a LOT to learn, and a LOT of trial and error.  Please feel free to PM me if you need to talk.  (I'm not really as mean as I sound!)