Clusters after 20 years

[kristikay]

I started getting cluster headaches in college and had cycles of them about every 18 months for the next ten years.  When I was 32 they went away and did not return until two weeks ago.  It took me awhile to figure out they are cluster headaches as they did not start out as painful as I remembered although they are now!  My doctor is treating them only as migraines because I don't have any sinus drainage.  At first I was okay with that but the headaches have increased in frequency and intensity.  I am now 100% sure it is cluster headaches even though no sinus the pain is excrucating. He has me on imitrex but I can only treat one headache a day and I am having two or three.  I can not work or even function right now.  Does anyone have advice on what I should tell my doctor or what I should i should ask for treatment? In the old days I used Lithium to control the headaches but hoping there are better options now.

[CHfather]

If your doctor won't believe that you have CH when you now know that you do, get another doctor fast.

First thing you want is OXYGEN. http://clusterbusters.com/wp-content/uploads/2012/11/OXYGEN-12-2012.pdf

Or maybe the first thing you want, right now, is the way to use less trex with each injection. I promise you that Bejeeber will be along soon to point you to the way to do that.  If he's not (but I'm sure he will be), I'll try to find it.

Have you tried drinking an "energy drink" (RedBull, Monster, etc.) at the first sign of an attack?  Helps a lot of people.

I would say that in terms of prescription meds, maybe not much is very new. Prednisone, verapamil . . . Lithium is used less, but still prescribed.

There are a lot of non-prescription strategies that have worked well, "busting" being one of them.  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865     Also the vitamin D3 regimen -- http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 -- and licorice root: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068

More, too, but that's a start.

[CHfather]

I know that Bejeeber is out there somewhere, but here's that method for extending imitrex: http://www.clusterheadaches.com/imitrex.html

[spiny]

O2, O2, O2!!!!!!!!!!!!!!!!!!!!!! Your best friend! Insist on a 25LPM regulator and get the Optimask from this site. Learn how to use it and use it at the first sign of an attack. In my opinion, it is the best medicine the doctors can give you.

Many of us have had teeth pulled and sinus surgery for what was in reality Clusters. It won't help. Neither will antibiotics for the proverbial sinus infection.

Especially for women, doctors will hit you with the migraine diagnosis. Many still think that clusters are a 'guy only' affliction. They are wrong. Most meds are passed over to us from the migraine medicine chest. To my knowledge, there is no CH medication actually marketed today. Soon maybe.

All the best,

spiny

[Bejeeber]

So glad to see the cavalry has swooped in - POUNCED really  ;D. The info dished out so far is rock solid and invaluable, Kristi. I think you're smart to consult on the latest developments with these most excellent and knowledgeable folks here - it will make a BIG difference and bring effective ways to fight off the beast.

I know that Bejeeber is out there somewhere, but here's that method for extending imitrex: http://www.clusterheadaches.com/imitrex.html

LOL thanks for filling in 'til I got here CHf. 8-)

And now allow me to expound!  An imitrex injection user (granted we don't know yet if it is the injection form you are currently using) who is having 3 attacks a day but has just one 6 mg syringe of imitrex per day can instantly solve that predicament by following the instructions in the above link.

That method is well established and has proven successful for 100's (at least) of CH'ers including myself. Notice the link dates back to 1999.

I also like this Newsweek article on busting for CH, I think it makes for a good, well written, interesting intro to the topic:

http://www.thedailybeast.com/newsweek/2009/10/14/the-psychedelic-solution.html

[kristikay]

Thanks for all the information.  The imitrex I take is pill form and since the doctor increased the dosage it has helped. I don't know if I could give my self injections.  I am seeing the doctor tomorrow and insisting on the O2.  I am just seeing a regular doc in the clinic, to see a neurologist is a very long wait unless he refers me tomorrow and is knowledge of cluster headaches is limited. 

[Bejeeber]

to see a neurologist is a very long wait

Yes, I'm afraid that's typical. When CH'ers in cycle are told to wait months it basically constitutes criminal negligence IMO.

Of course an actual headache specialist would be the only type of neuro to bother making an appointment with - the garden variety neuros usually don't know jack about CH, but that won't stop 'em from winging it and prescribing all manner of wrong junk.

I don't know if I could give my self injections.

Just FYI - the abdomen - just to the side of the belly button - can be a practically painless spot to inject. My experience was the first injection induced all manner of cringing and flinching and false starts, but once you've actually taken the *plunge*, ya realize it's easy. Nothin' to it. No biggie. Granted, some people have more of a needle phobia than I do.

[CHfather]

I am seeing the doctor tomorrow and insisting on the O2. 

Consider printing out that article about O2 (the Journal of the American Medical Association one) and bringing it with you, and/or emailing/faxing it to your doc's assistant in advance.  Like you say, most docs don't know much about CH.  Some are willing to be educated.  Many people here have found that a nurse or physician's assistant is a good ally to have.  If your doctor won't give you O2, you can create your own system using welding oxygen.  Keep us posted!

[blueballs]

Man, you guys rock!!!!! [smiley=beer.gif] [smiley=beer.gif] [smiley=thumbup.gif]

bb

[weatherman]

kristikay ....

Amazing how a quick couple of visits to this forum can help someone so much.  I can attest to the invaluable advice you have been given.  Months (or years) of enduring the crap from doctors and the CH condition can lead you to seek guidance from other sources.  Glad you found ClusterBusters.

The people who initially replied to you are only a few of the GODS on this site.  There are many and they WILL help you.  The O2 is absolutely necessary!

Take their years of involvement, extensive knowledge on this subject and personal experience with CH to heart.  You will be surely be rewarded with relief.

Best of luck and many pain-free days for you!

weatherman 

[domino]

Pill form of imitrix really isnt going to help you. Only shots will and they are used to abort during an attack rather than trying to prevent an attack. I do not know anyone that has ever had any luck with pill form for preventing or aborting a cluster.

When attacks come on - take an almost frozen (slushy) red bull out and slam it fast. This might help cut the amount of time your attack will last.

Sinus - Not sure I understand what your neuro thinks about this. For most of us it happens like this, one side of head only the pain comes on in about 5 minutes after you start to feel it, the eye on that side of your head might water up-droop , that side of your head nostril will typically close up - once attack ends things get back to normal. Eye clears up , then that side of your nostril will typically run a little. This doesnt happen to everyone.

Tell your neuro this depening on how you answer .

Can you sit still during an attack? No is the answer for clusters

Can you lay down during an attack ? No is the answer for clusters

Could you eat something if you wanted to ? Yes maybe - Most migraine sufferers would get sick if they tries to eat something during a migraine. I could actually eat something if I wanted to but I dont because I am fighting the pain.

Here is the big one - if you took a drink of red wine would you get an attack within 5 minutes of a drink of it. Clusters can not usually have alcohol during a cycle . It seems t be one of the biggest triggers. Not sure about migraines though.

Do you curl up into a ball and roll around on the floor pulling your hair out due to the pain? yes would be a cluster

I am not a doc but these are some of the things to think about and telling your doc. The way most of us know our cycle has ended is to take a swig of beer or red wine or any alcohol - if nothing happens within a few minutes most of the time we are clear of the cycle. If you start beating your head with pain on one side of your dome - you know the cycle is still with you and hasnt ended.

Also do you fall asleep at night and then get woken up by some of the worst pain you have ever had on one side of your head? This is something that is very typical for a cluster patient and should be mentioned to your doc.

I was in the same boat you are now - until I found this site. Now I get rid of them for long periods of time and keep them at bay with proper maintenance. I too could barely go to work anymore. But I am all better now.

Have hope - there is an answer for you - it just depends on how your body needs to treat it. Any ?'s hit me up anytime and send me a message. We are here to help.

[Bejeeber]

I am all better now.

Gotta love hearing that best ever type of news! 

Pill form of imitrix really isnt going to help you. Only shots will

Can you lay down during an attack ? No is the answer for clusters

You are right Domino, the above assertions are certainly generally true, but as can happen with every rule, I've actually seen some exceptions.

For instance an occasional CH'er who has an absolutely predictable attack 1 hour or so after falling asleep has had some success preventing it with an imitrex pill at bedtime.

Also some CH'ers are known to lie down (and writhe) during an attack. I think this can depend on severity of attack and personality of a given CH'er.

[kristikay]

Had a good visit with my doctor. He did agree that my headaches are cluster headaches.  I am having some relief with the Imitrix pills.  If I take it at the very beginning of the headache it keeps it from getting out of control, the problem is with the ones that wake me up by then it is to late to stop it with the Imitrix.  I have used the oxygen twice and it holds it off but them came back.  i know I don't have the right type of mask but i was hoping it would keep it gone so I can get some sleep tonight! It is helping though so I feel better that I am on the right track to getting some relief.  I have three days before I go back to work and still not sure how i am going to do it.  

[blueballs]

Your going to do it fine. Being anxious is part of the gig. You need more flow with the 02 and keep breathing the 02 for five minutes after you get relief...you can get better aborts with 02...optimask and 25lpm...were with ya.

bb

[kristikay]

Your going to do it fine. Being anxious is part of the gig. You need more flow with the 02 and keep breathing the 02 for five minutes after you get relief...you can get better aborts with 02...optimask and 25lpm...were with ya.

bb

Thanks!  I am just wondering how fast you usually go through a tank of O2?  I have used it 3 times and it is empty.  I thought it would last longer than that. I am only using 15 lpm and that is high it goes. I have one more tank and three imitrex.  My insurance isn't covering the O2 and I have already maxed out my imitrex prescription.   :-?

[CHfather]

i know I don't have the right type of mask

Do you mean that you don't have an O2ptimask, or you don't even have a non-rebreather mask?  Can you remove the mask and suck air directly from the plastic that connects the tubing to the mask?

I am just wondering how fast you usually go through a tank of O2?I have used it 3 times and it is empty. I thought it would last longer than that. I am only using 15 lpm

  An "E' tank, which must be what you have, will give you about 35 minutes of O2 at 15 lpm.  (An E tank is a little over 2 feet high and 4-5 inches in diameter (14" in circumference).)  So like you have said, that's about 3 sessions, or less.  If your mask is inefficient, of course you're going to get less out of it.  Have you tried drinking an energy drink before you start on the O2 -- that can speed up the process.

I don't know why your insurance wouldn't cover the standard prescription for CH (O2), or why your O2 supplier would give you two E tanks instead of an M tank (an M tank holds five times as much O2 as an E tank).  Can you request/demand an "M" tank?  That's the standard size for CH.   At the least, can you have them come replace the empty E tank with a full one?  Since the O2 works for you, you might want to try to set up a system using welding oxygen in the long run if you can't get insurance coverage, but for now, I'd really try to get that bigger tank. 

[kristikay]

i know I don't have the right type of mask

Do you mean that you don't have an O2ptimask, or you don't even have a non-rebreather mask?  Can you remove the mask and suck air directly from the plastic that connects the tubing to the mask?

He called it an M tank so maybe I am not understand how to use it?  It is bigger than 2 feet.  I don't have a mask just a thingy that goes in my nose.  It helps but I am on my second tank and haveused it about 20 miutes and it is very close to 0 but could I not be understanding how to use it?  I will call the supplier when they open.  I tried a red bull before I used it this morning, drank about half and it did help. Last night took an imitrix pill, used )2 for 10 minutes and slept from 12am to 5 am the most sleep I have gotten since these things started again.  On another note it is so amazing to have somewhere to come where I am can ask these questions.  Everyone support on this board makes a lot of difference.

[spiny]

Get the non-rebreather from your supplier! It is a mask with a bag attached. The bag fills with O2 while you exhale, so it is not so wasteful. At the start, breath deep and exhale completely with force. At this stage you hyperventilate some, which is good, usually due to the pain. As the pain recedes, your breathing will slow. Now, if it took 5 minutes or 60-70 breaths, stay on for that amount again, breathing normally.

The 25LPM will provide enough O2 to fill the bag during exhale for most people. The Optimask is the best non-rebreather. 15LPM is the minimum for CH and does not work too well. If you cannot get a 25lpm regulator there is an easy way to create the supply with the 15lpm. The mask is about 30.00 and worth twice that.

Since you have a nose thingy, it appears you have a cannula. It will not work worth a flip and will waste your O2. Talk to the dr and supplier. One or the other should get it fixed asap! You do not need supplemental O2, you need pure, straight O2. A cannula just raises your O2 slightly, mostly you are still getting air!!!!!!!

spiny

[1EYEcries]

15LPM is the minimum for CH and does not work too well.

10-12LPM aborts 3-5 attacks a day for me and has for almost 3 years. If the bag consistently has enough air for each breath, its enough. Unless your 7 ft tall with a massive lung capacity, 25LPM is overkill IMO

[domino]

Had a good visit with my doctor. He did agree that my headaches are cluster headaches.  I am having some relief with the Imitrix pills.  If I take it at the very beginning of the headache it keeps it from getting out of control, the problem is with the ones that wake me up by then it is to late to stop it with the Imitrix.  I have used the oxygen twice and it holds it off but them came back.  i know I don't have the right type of mask but i was hoping it would keep it gone so I can get some sleep tonight! It is helping though so I feel better that I am on the right track to getting some relief.  I have three days before I go back to work and still not sure how i am going to do it.   

The ones that wake you up in the middle of the night are no joke! To me these are the worse ones. I hate them, I would much rather deal with them in the middle of the day then I would the night time wake up beast. For me anyway after the first wake up attack and fighting it off - I would go back to sleep only to be hit again 2 hours later. These ones suck and you get to the point where you just would rather not go to sleep at all. We know how bad these ones are. I feel for you.

I used to slam 2 red bulls before I would go to sleep. People would ask me how I was able to drink 2 red bulls then go to sleep. I dont know how - but when I am not in a cycle it keeps me up all night. I think you are just so tired from the fighting that you are exhausted.

The one thing they say to do though - is to get sleep even if it is for a few hours at a time.

Hang in there -

[CHfather]

I don't have a mask just a thingy that goes in my nose.

  This kind of cruelty just makes me nuts.  As spiny says, you want a non-rebreather mask. The cannula is  useless. DEMAND this!  If you are challenged about it, refer them to the JAMA article: http://jama.jamanetwork.com/article.aspx?articleid=185035

(And if you have the energy, tell them you're not paying for the oxygen they made you waste.)  When you get the mask, please read page 8 in this: http://clusterbusters.com/wp-content/uploads/2012/11/OXYGEN-12-2012.pdf  It has advice for using the mask.

[blueballs]

You need a letter of medical nessesity from your doc for the 02. Give it to your insurance and they will pay....25 lpm is not overkill when trying to stomp out an attack that is already fully involved. You want to induce hyperoxia..or hyperventilate on 02.....cant do that with 15 lpm...just my experience. I go 5 ft 3 inches at150 lbs...when its a kip8 or better I huff 40lpm. Overkill?.....I disagree.

[1EYEcries]

If the bag consistently has enough air for each breath, its enough

If you dont empty the bag on 15 lpm, turning up the lpm isnt going to make a difference.

"Hyperoxia is excess oxygen or higher than normal partial pressure of oxygen.

In medicine, it refers to excess oxygen in the lungs or other body tissues, which can be caused by breathing air or oxygen at pressures greater than normal atmospheric pressure. This kind of hyperoxia can lead to oxygen toxicity."

With oxygen toxicity you can change the ph of your blood, and damage your cells and actually cause death of the cells, in extreme cases it can be fatal.

This is where the safest treatment may become dangerous.

There is a reason why your doctor is reluctant to prescribe O2 at high LPM.

It can be overkill, literally...

http://en.wikipedia.org/wiki/Hyperoxia

http://en.wikipedia.org/wiki/Oxygen_toxicity

[blueballs]

Just remember that 20 min timelimit......if it hasnt worked by then , its not going to. Still disagree. [smiley=beer.gif] [smiley=beer.gif]

[CH-HELL]

Well to a point 1 eye is right excess O2 and it being dangerous,       BUT many people have shown that even 25lpm a large optimask bag can be emptied in one breath.  So it depends on the person and I don't think it depends on the persons size either,  small people have big lungs too...lol  Also I believe that most O2 dangers are caused by increased pressure due to diving or hyperbaric chambers and the amount of time to abort a cluster shouldn't cause any issues unless you are staying on the oxygen for hours you have nothing to worry about.   

CH