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Joey

Concerned Daughter in Law

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Hi Everyone,

I wonder if you can help me. My Father in Law is suffering from Cluster Headaches. He is now into his 14th week of being off work with them, and just seems to not be able to shift them. I have joined the CB's website and have found some very useful information (Thank you ever so much) i have told him about the Red Bull that many of you have mentioned and he is starting to gulp it as i have told him when he feels an attack coming on. He has come round tonight and looks a sight. He is now having 4/5 attacks a night and they are now happening through the day. I'm really worried about him and would like some help,advice or some reassuring words from others to help him and us get through this.

Thanks

Jo

x x x

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Well he sure is lucky to have YOU!  :)

Needless suffering. That's my first take on what he's going through right now.

Let's fix that! It really is possible for the vast majority of us CH'ers to find significant relief (me: 30 year CH'er finding lotsa relief).

First order of business is to start using high liter flow 100% oxygen to abort the attacks as outlined in this link: http://www.clusterheadaches.com/O2/index.html

It's available from medical suppliers by prescription (although idiots doctors usually write a prescription for ineffective low flow rebreather O2 - this can largely be ignored once the O2 is obtained). Or non prescription and available immediately from a welding supply place. Don't volunteer that it's for medical use though.

Today would also be a very good day IMO for him to go on the anti inflammatory D3 regimen which appears to have shut down the cycles of some CH'ers and is just good for you in any case: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

For a super powerful tried and true preventative, psilocybin mushrooms can knock a cycle right out for many of us. Many are fond of the much milder acting RC seeds too.

Melatonin 9 to 18 mg before bed can prevent the night hits for some of us.

Plenty of other ways to attack this beast, but for starters I've listed what I think are some of the primary things to do first.

Stick with us, and please do whatever you can to get dad in-law on this site to hang around with his CH tribe.  8-)

I think what you're doing here is going to save him.  :)

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Jo, it's great that you're stepping in here to help.  Sometimes folks with CH can get so caught up by the pain and frustration that they stop trying to get better.  Maybe they've been to doctors who have not given them proper treatment -- almost everyone here has many stories about that.  But people here have been able to hang in there, often with the help of someone who cares like you do, and their lives are 100% better -- even pain-free in many cases -- because of it.

Everyone here will tell you that oxygen is essential.  Does he have that (a tank with a regulator that goes up to at least 15 liters per minute, and a non-rebreather mask)?  You (and he) can read more here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

Can't overemphasize the oxygen.  It can stop an attack in 15 minutes.  It saves lives.

Do you think he'd be willing to try the "busting" elements mentioned here?  As you might have read, they are taken at levels that cause little or no psychedelic effects -- and they work for a very large percentage of people.  You could start by reading this file (and there are many others on specific related topics in the "Clusterbuster files" section of this board): http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865

Is he taking some kind of prescription medicine now?  He might have to "detox" from that for five days before trying "busting."  Let us know; ask any questions you have; and answers will appear from people who have beaten this terrible thing, CH, and want to help others do so.  If you can get him to participate himself here, he will be sure to find many brothers and sisters who are "just like him" in many ways, and who will help restore his hope and determination.

I would also recommend that in my opinion he should start right now on  the simple, inexpensive, easy, and safe vitamin D3 protocol that seems to have helped many, many people quickly and also lastingly.  You can read about it here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 

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Hi,

Thank you ever so much for your replies.

FIL (Father in Law) is on oxygen 15 litres per min 100% oxygen with a non rebreather mask. He also takes 120mg x 6 per day of Verapamil and nasal sprays when needed. He also has injections but only takes them when the pain is really bad. I have ordered some RC seeds but am a little unsure as to how many he should take and when. i know you have to crush them and soak them for 2 hours in water and drink the water but when to do this i am not sure. I am going to look over the weekend for the tablets for the D3 Regime.

FIL has just said that when he came off the Verapamil due to running out over a bank holiday he was experiencing full blown pain as he put it, with pain behind and around his eye stretching down his face and over to his ear, he also had a stiff neck and found it hard to swallow. Please excuse my ignorance and rudeness but could somebody explain the pain so i understand what everyone is experiencing and also what symptoms i should be aware of when an attack starts, just so i know where i need to be and what to do to help.

Joey x

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Is the oxygen helping him???  If not, he might want to try a higher flow rate and deeper inhalation/hyperventilation.  Also, as you can see from the oxygen file I referred you to, there is some equipment, such as the O2ptimask and a demand valve, that make the use of O2 considerably more effective.  And also also, I wonder whether, if the oxygen is helping him, he's staying on it long enough to completely abort his HAs -- it's recommended to keep using it for at least several minutes after the headache has gone away.  If you haven't looked this this file, it might help: http://www.clusterheadaches.com/O2/index.html

Regarding the seeds, people start at all different levels.  Some start with what we would consider a very small dose (10-20 seeds), to see how it affects them. The problem is that generally that's not a high enough dose to have much effect, but you still have to wait five days before dosing again.  This is not a science: not only are people affected differently, the seeds vary in potency, so a lot is done by testing to see what works without undesired side effects.  I would say that many people, if not most, work their way up to a dose of 50-60 seeds or more . . . but some get relief at 30-40, and some have reported at least short-term remissions with as few as 15.

I think most people take them around bedtime.  Many/most people get a very good night's sleep after dosing, which is quite a blessing in itself.

Regarding the pain, I'll let others speak.  You could read this: http://en.wikipedia.org/wiki/Cluster_headaches      I always remember a doctor saying it was equivalent to the pain of having an arm or leg amputated with no anesthetic.  Others may also have advice about what you can do to help during an attack.  I'm afraid that "not much" is the answer, but maybe I'm wrong about that.  When my daughter was on the downside of an attack, it seemed that I could sometimes help by circling her arm with my hands and pulling down toward her wrist, as though I was getting the blood to flow in that direction.  But there were also times when any touching was unbearable for her.

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What CHfather said.  :)

Plus, the injections and nasal inhalers (imitrex) interfere with the busting, so unfortunately it is advised to wait 5 days after the last dose of one of those before taking the RC seeds.

For any severe attacks that FIL still has to abort with imitrex injection, this tip on how to stretch the doses can be invaluable: http://www.clusterheadaches.com/imitrex.html

15 LPM 100% O2 is better than most CH'ers are prescribed, but for me and many others we have to take it to minimum 25 LPM and hyperventilate it when the high cycle attacks are coming on strong. I actually have to take it to the 45 LPM range. Good that he's already doing the red bull, since chugging one at onset of attack right when going on the O2 can help the O2 abort last longer. I'm hoping a higher LPM could help FIL avoid the imitrex and get detoxed long enough to bust.

Verapamil seems more iffy as far as whether it will interfere - I know that formerly chronic CH'er Brew here has reported some success busting with mushrooms while he was still on verap, then complete success when he got off the verap, so it may be worth a try?

When FIL does take the RC seeds, I would advise taking them right before bed. Personally I've routinely taken 50 seeds before bed and felt nothing except one minute of nausea and a significantly better night's sleep than usual. The better sleep thing is very common with RC.

About what the pain is like - well it is often referred to by female CH'ers as more severe than childbirth, plus it tends to be right behind the eye, which is a tough spot to take your mind off of. Besides the typical signs of someone being in agitated agony, a tearing, droopy eye on the CH side is a common indicator.

I'm going to take back the presumptive "needless suffering" comment I initially made now that I know how aggressively FIL has been fighting the CH so far.  :-[ We'll hopefully step his game up to that next beast killing level though.

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The pain - its like being touched by the finger of god. It is the purest most exquisite pain I have ever known. (in the right mindset).

In the wrong mindset, its like the searing heat of hell. Battling all the demons at the gates each clawing at the side of ones head sinking talons deep and not relenting for hours then they rest and attack again and again and again.

Nothing compares to high level hits.

There really is no way to describe the pain its just hurts really really much. It can be totally all encompassing of thought and action. One can go days without sleep at the worst. After months sometimes years of unrelenting pain God and I come to an understanding. I say is that all you got and he says yeah thats it.

How old is FIL sounds like he may have had clusters a while.

The greatest help that one can provide is compassion, education and understanding that this is what we can battle every hour on the hour. He has found his way to deal with it most likely and that is to shut out the world while the battle rages.

Tell him from this poster that after 32 years of the most extreme CH i have had life returned to me 10 fold with the cluster buster ways. Its been 37 years since I was first afflicted. I still have my go rounds but nowhere near what they were in frequency.

Life is better lived than avoided.

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Joey,

I concur with MJ.  With a K10, the pain is more intense than anything imaginable.  They are called suicide headaches for a very valid reason.  Over the last 23 or so years I'v lived with CH the attacks seemed to increase in pain each year.  That is, until my introduction to seeds, fungus and O2.  Life is unbelievably better now.  I haven't touched anything from the witch doctors in over a year now and life is 100 fold better than with all the prescription meds (that either didn't work or had terrible side effects).

Jeff

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Thanks Guys for the help. FIL is 51. i heard him say about the headaches previously but as we have never been close until now i have never experienced myself the pain i have now seen him go through. It is only until this year that i have known him to be suffering the worst ever. My RC Seeds are being delivered tomorrow. I will tell him that he needs to detox for 5 days before we can go ahead and try them. I'm quite lucky regarding the Shrooms as they grow wild in the field opposite my mums house.Will have to get in there before the youngsters do.

CH Father, the oxygen seems to take about 30/40 mins on a minor headache before he comes round and the pain has gone. is this too long??

Will start the D3 regime tomorrow. Fingers crossed x x

Jo

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the oxygen seems to take about 30/40 mins on a minor headache before he comes round and the pain has gone. is this too long??

Waaay too long!  Maybe even dangerously long.  You say the flow rate is 15lpm and he's using a non-rebreather mask, so I'm kind of stumped.  He either needs to switch to higher flows with a new regulator as Bejeeber has mentioned (about which Jeebs and others here are considerably more expert than I am, and which you can also read about at the two oxygen files I've referred you to), or maybe he's doing something wrong with what he has.  It's a tank, right, not a "concentrator" (a concentrator is typically a squat, gray, noisy machine that makes O2 from room air--practically useless for CH)?  And is there a hole on the side of his mask that lets room air in as he breathes in? That needs to be covered so he's getting only O2. (There's an illustration of this at  http://www.clusterheadaches.com/O2/index.html

and here's what it says there:

>>>Notice the little round white disks on the side of the mask.  These control the exhaled air, and the outside air.  If there is not one on each side, either tape over the other one, or (as I do) place your thumb over the holes, during an inhalation, and then remove the thumb during an exhalation.  If these valves are not present, or in good flexible condition, you will not get the full 100% oxygen that is required.

If you are male, and have facial hair, you may have trouble getting a full seal around the mask.  You may want to just remove the mask, itself, and breathe straight from the plastic valve mechanism.<<<

He could try the O2ptimask, which which a lot of people get much better results.  Maybe others will chime in here with things I'm missing.

And we'll hope for the best from busting/D3.

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Hi,

He has a tank. That is weird. What should he be doing with the air, taking deep breaths as he is now?

Sorry to sound so vague with my questions and replies.

xx

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Yes, deep breaths.  There are some people for whom O2 just doesn't work, but that's pretty rare.  Did it ever work for him, more quickly/more effectively than it does now?  I'm over my head, so hopefully others will step in.

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Just spoken to him, he can get a mild headache under control with red bull and oxygen in 45 mins to an hour. If it is a bad one its nearly 2 hours.

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Joey,

It doesn't sound like the O2 is working.  Normal attacks are around 1 to 2 hours for most people w/o Oxygen.  The key to Oxygen is NOT to delay.  As soon as he feels an attack is coming, get on the Oxygen immediately.  I'v found through experience if I get to the O2 as soon as I feel it starting I can kill it in as little as 5 mins.  If I don't start the oxygen until the pain is ramping up, then it's 45 minutes or more.  The key is react quickly with a high flow.

Jeff

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I too think it's a good idea to double check that a non-rebreather mask (not your usual mask - these often have to be special ordered) is being used.

The ultimate O2 delivery alternative - Demand valve systems - are considered by anyone who has tried them to be the quickest and most effective and IMO should be more strongly recommended in the O2 info link at ch.com.

They're more expensive, but let's get real here - quick, effective aborts are beyond priceless! So if FIL can afford one, I think that's a really good thing to look into for any CH'er.

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If it's taking 45 minutes to subside, the 02 isnt working or if at all, very little.

I would definately order a new mask first off to see if that will help. You need 100% 02 and if you're losing 10-20 because of the mask, it can make a huge difference. And cutting 30 minutes off an attack is.....HUGE

After the mask, THE most important thing is starting as soon as there is any indication a hit is coming. Toss away the "oh no, I hope this isnt what I think it is" and sit down, grab the mask, turn on the valve full blast and relax, and take deep breaths.

The others have offered the best advice on other things to start doing now.

Read the Mushroom FAQ in the Clusterbuster files and scroll down to the detox section and you'll find some other tips.

He may be a little afraid of a detox making things worse, (can't live without the imitrex) but many people find the detox to actually reduce the number of attacks.

best of luck and thanks from all of us sufferers for looking after "one of us"

bob

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Yeah, I was thinking that maybe the Verap and the Imitrex may actually be causing him increased activity.

Facing detox is really scary, but when the worst is over, he will say it was well worth it.   

It is quite liberating to release your grip on traditional meds and all the baggage they bring.

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