help!

[Grace]

I'm a female. I'm 25 and I've been suffering from clusters for as long as I can remember.  Even as a child I would get them for a week at a time once a year. Now the pain is getting worse and they're getting longer in duration.  Usually the cluster occurs each summer, but I have had some in the winter as well.  I get one at least one a year.  I'm currently in a cluster.  The pain comes every other day, and last for about a 90 minutes. I can barely stand it. My eyelid droops, I get sick to my stomach, my eyes go crazy. Its like knives are stabbing me at the temples.  Light hurts, sound hurts, smells hurts me. Every thing seems like a trigger to me; alcohol, smoke, caffeine, heat, stress, too much sleep, too little sleep, so many foods.  I am on verapamil, topiramate, and then I begin predisone at 60mg and taper off when the cluster begins.  I also have an oxygen tank.  The oxygen doesn't seem to helping, maybe i'm doing it wrong.  The pain is unbearable. I ended up in the ER yesterday and they gave me a benadryl cocktail, but by the time the doctor saw me, the cluster was already over.  I guess I am looking for recommendations on anything. I never heard or considered drinking caffeine since it's such a trigger for me, but I'm willing to try drinking a caffeine shot next time. I'm willing to try anything. Maybe someone can offer me a suggestion about the oxygen as well.  I use about 5 liters per minute when the pain starts for about 20 minutes.  The pain just continues with such intensity that it feels useless.  I see a neurologist at the mayo clinic and he has never said anything about injectable sumatriptan. However, this is something else I'd like to look into. I'm worried about side effects, but mostly I just want to find relief. I wonder why he never mentioned or recommended this to me in the past. Any help you can offer, will be much appreciated !!

[CHfather]

I'll give you a quick tip here, Grace, and others will fill in much more.  5 lpm oxygen is useless for everyone.  Please read the CB oxygen page under the black and white MENU tab on the left side of this page and do what you can to use those conditions (15 lpm, non-rebreather mask, effective breathing strategy).  Tell us more about your oxygen setup if it doesn't seem right to you (e.g., include a photo of your mask if you don't think you have a non-rebreather).  I have to run, but you'll be in very good hands with others. 

[Bejeeber]

Hi Grace, so this Mayo neurologist diagnosed you with clusters but has never mentioned injectible sumatriptan? I'm baffled by that one, it sounds like what you might expect from a non headache specialist neuro (they often know next to nothing), but this Mayo neuro is a headache specialist, right? And if that neuro is the one who prescribed the pathetically useless joke of measly 5 lpm O2, well just color me flabbergasted.

So the good news is that there's a lot of very effective stuff you can consider now that you're getting on the necessary patient self education bus, including:

Pain in both temples simultaneously as opposed to just one, light sensitivity, etc. aren't hallmark symptoms of CH - maybe some others here will want to talk more about that.

[Brianna]

Hi!

There is a lot of info to pour over on the forums here that will help you. I live in Minnesota, I take it you do too?

[CHfather]

Grace, you also want to get started on the oxygen as soon as you sense an attack coming.  Don't wait and hope it isn't an attack.  Starting sooner means a much faster abort.

Like Jeebs, I looked at some of your symptoms and wondered whether you have had a specific CH diagnosis.  But some people with CH do have light sensitivity, and the meds you're on are CH meds (even though it's surprising, as Jeebs says, that you didn't get trex and your O2 system is so feeble). 

Don't think I've heard of caffeine as a trigger, though.  I guess you could try an energy shot and see what happens, but a trigger's a trigger, so it's not completely unscary, as you say.

If Jeebs has led you to want to learn more about busting, you should read the numbered files in the ClusterBuster Files section of this board. Here's a link to it: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?board=files  Start with files #3,1, and 6.  If you do decide to try busting, you will have to be five days past the end of your prednisone taper and also five days past your last dose of topirimate.

[MoxieGirl]

Hi Grace,

Looks like you're getting some excellent advice already.

There is also the 'Vitamin D3 Regimen' that a lot of people find helpful. It is basically high doses of Vitamin D3, Omega 3 and a few other things - all legal and safe. More information can be found here:

https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

I can sometimes be a little light sensitive when suffering an attack, although movement and smells affect me more. Most CHers don't suffer with sensitivities - light, sound, movement, smell - during a cluster attack, certainly not like migraine sufferers do. I think because I also have a lot of migraines, any head pain can really up my sensitivity. The vast majority of cluster heads I know can't sit still during an attack. I tend to curl up in bed and stay as still as I can, although at the peek of the attack I tend to toss and roll about quite a bit.

This is the first I've heard of caffeine being a trigger, it is usually our friend. Then again, alcohol is NOT a trigger for me, which is very rare. Most people find alcohol a massive trigger.

As Jeebs said, cluster headaches being one sided is a hallmark sign and is one of the diagnostic indicators. But, I've had a cluster on both sides at the same time before, as well as having clusters move from one side to the other. Not often mind you, maybe 3 or 4 times out of a couple thousand attacks.

The more I talk with people about their clusters, the more I believe there are no absolutes when it comes to the beast other than extreme pain.

MG

[Grace]

Thank you so much for all your helpful feedback. I'm from New Jersey and moving back there at the end August.  For the past couple of years, I've been living in Jacksonville. I was told that the neurologist I was seeing at Mayoclinic, was one of the best.  However, every time I start a cluster, he refuses to answer my phone calls and just prescribes me predisone.  He basically swears by it and verapmil.  I had to go about getting the oxygen on my own, which is why I guess I ended up getting the wrong tank. I didn't know you could get the wrong tank.  The man that dropped it off was the one who told me which one I needed.  My tank only goes up to 10 ml. Clearly, I need all the help I can get. Luckily I found you guys, and I've already learned so much! I can't thank you enough.

I'm hoping to go to the headache specialist at Jefferson when I get back to NJ, but mostly I'm really interested in trying the D3 regimen.  And getting the right oxygen tank of course.

I didn't realize light sensitivity wasn't typical. My eyes lose focus during an attack, and any light I encounter enhances my pain. I also get sick to my stomach during the attack, which I've been told also isn't typical.

As for caffeine being a trigger, I guess theres a chance its not. I'm not a big caffeine drinker.  I'm basing this assumption on one really bad attack I had after I had a big coffee.  I blamed the coffee for the attack since it wasn't typical for me to drink any caffeine. I tend to cast many things as triggers, even though they could be coincidences.  Fear of clusters is not fun. 

[Dallas Denny]

As Jeebs remarked, several of your symptoms are not typical for a CH diagnosis....however, we've had several sufferers on the board over the past few years with a "Cluster Migraine " diagnosis!

DD

[CHfather]

The biggest study of people with CH in the US was done in 2010-2011, using a survey form filled out by more than 1,000 people.  Interestingly, in that report, when the authors asked about "migrainous related symptoms," 48% of the people with CH said they had some sensitivity to light during an attack, 42% sensitive to sound, 36% nausea, 17% vomiting.  3% reported having attacks on both sides.  http://api.ning.com/files/pfE*ryEYQnrh22lBHWRvZQcE1ckYoPstVvGx1WGGJgf3xQvmQO3BetZjh2iRhqkewovTjOcHJU4rapbNW8EekDMrHdoNMAHA/ClusterHeadacheinUSA_Demographics_ClinicalCharacteristics_Triggers_SuicidalityandPersonalBurdenNov2011Headache.pdf

Did you look at that oxygen page I referred you to?  It tells you there how to buy a better regulator and mask.  You want to do that right away.  Your 10 lpm might work a little, but you really want to step up to better stuff quickly.  You do have a tank, right -- not a concentrator?  How big is the tank? 

[Bejeeber]

Thank you everyone for piping in where I left off regarding symptoms.

48% of the people with CH said they had some sensitivity to light during an attack

Whoa! 48%?! Well that tells (or, ahem, reminds me of) a thing or 2, thanks CHf, and MG, your account of 3 or 4 attacks on both sides informs (or, ahem, reminds me ) that it is possible.

[CHfather]

I've been trying to find the actual multiple-choice questionnaire that the authors of this study used, but haven't been able to.  The questionnaire was posted at both ch.com and OUCH in late 2008.  Without having seen it, I'm going to assume that what's being counted in the 48% numbers and the others I mentioned is anyone who ever has had those symptoms, as opposed to those who have those symptoms regularly.

[Grace]

I did read over the oxygen page. It was very helpful, thank you.  I believe I have the right size tank.  I just think I need to upgrade my parts maybe? to increase my air flow? I also need to get a mask, because right now I have a cannula.

My pain is only on one-side although I do experience the sensitivity to light and the nausea.

[CHfather]

The thing is, if it's a medical oxygen tank, the higher lpm regulator you want will have to be of the right style to fit on the tank. That's why knowing the size of the tank matters.  If it's welding oxygen, it's simpler, because all the fittings for regulators are the same. 

Oxygen will make a huge difference for you. You should make it an urgent priority.  A a mask is your first priority.  In the short run, you can probably get some help from the 10 lpm regulator, although if you can afford it, you also want to upgrade that regulator right away.  The best mask, which costs about $25-30, is here: http://www.clusterheadaches.com/khxc/.  I think it might take about a week for delivery.  A satisfactory mask, that will be sufficient to get started, costs just a few bucks. Look on ebay or amazon.com for non-rebreather masks.  Note that these masks are quite inexpensive, so if you see a price quoted of more than a couple of dollars, it is probably for a case of masks, not just for one.  Here's one at amazon, where you can get 1-3 day shipping for an additional $11. http://www.amazon.com/Medsource-Non-Rebreather-Adult-Oxygen-Mask/dp/B004Z8V47G/ref=sr_1_2?s=hpc&ie=UTF8&qid=1407017735&sr=1-2&keywords=non-rebreather+mask

If you can say how tall your cylinder is and what its diameter is, we'll know what size tank it is, and then we can talk about what regulator to get.  Like I've said, if it's a welding oxygen tank and not a medical oxygen tank, then all the regulators have the same fittings.

[MoxieGirl]

Chfather - that is a great survey, am surprised I am just now seeing it for the first time! WOW!

I'd sit down and read it word for word if it weren't already after midnight. Will have to down load it and read it later.

Sad to see some people had to wait over 10 years to get properly diagnosed.

Hugs to all, off to bed now.

MG

PS

'Cluster Migraine', yeah... no...., don't do that. Cluster Headache causes enough confusion, cluster migraine does't help matters (at least in my opinion). Not wanting to fall into the debate of what these attacks should be called, that has been done to death. Cluster Headache and Cluster Migraine are SO misleading. Oh well.

[Grace]

Looking online it seems I have a type E tank. I've ordered the mask.  Thank you for the link.

[CHfather]

Grace,

At 10 lpm, an E tank will give you about 50 minutes of O2.  If you get results at 10 lpm, it's probably going to take you at least 15 minutes to abort an attack, and 20 minutes to follow the recommended procedure of staying on the O2 to help prevent subsequent attacks.  We can hope for better, and you might get it, but 15-20 minutes per abort is probably a good guess, maybe an optimistic one.  You can do the math: you might abort about two or three attacks, maybe four, with an E tank before it's empty. Even if your results are better, you're still going to run out of O2 pretty quickly.

I should have asked this before -- Did you get this tank, regulator, and cannula from a company that supplies medical oxygen? Somehow it sounded less "official" than that to me.  If so, you should be on the phone to them ASAP demanding that they bring you a larger tank (an M tank), a 15 lpm regulator, and a non-rebreather mask immediately.  Many O2 suppliers don't know anything about CH -- they're mostly supplying people who have COPD, where the low flow and the cannula and the smaller tank are fine.  If they're resistant, get them somehow to see that JAMA article about O2 for CH that's linked to in the CB Oxygen Page -- fax it to them, send them a link to it, read it to them over the phone . . . whatever it takes.  Do not relent about this.  I think most O2 suppliers want to do a good job; it's just that some of them are clueless about CH. (I am saying all this from experience.)

If you got the equipment in some other way, you're going to have to get that E tank refilled pretty often, or get some more tanks.  If your O2 supply is seriously limited, you won't use the high flow and really get into the aborting, because you'll constantly be afraid of running out again.

The regulators that fit medical oxygen E tanks have a CGA870 fitting. But if it's a "E size" tank for welding oxygen, the fitting will be CGA530 ("E" is only an official designation for medical O2 tanks; it's not used for welding O2 tanks, but the tanks are roughly the same size).  Here's a 25 lpm CGA870 regulator for sale at Ebay: http://www.ebay.com/sch/i.html?_odkw=oxygen+regulator+medical&_osacat=0&_from=R40&_from=R40&_trksid=p2045573.m570.l1313.TR0.TRC0.H1.Xoxygen+regulator+870+25+lpm&_nkw=oxygen+regulator+870+25+lpm&_sacat=0.

The fittings for all welding tanks, of any size, are CGA530.  The truly large medical tanks (M tanks) also use CGA530 fittings.

But again -- and I'm sorry for not saying this sooner -- if you're getting your O2 through a prescription, from a medical supply company, they should be giving you the basics of what you need.  They might only give you a regulator that goes up to 15 lpm, but that will be sufficient for good aborting (I hope) in the beginning.  They should also give you at least one M tank in addition to the E tank.

[Purple]

I'm also sick to my stomach when the pain reaches beyond kip 6, and vomiting is somewhat a relief. I certainly don't force it. The first time I took MM (2,4 g) to prevent an upcoming cycle that I was feeling coming, I felt exactly the same as when I'm having a big hit, felt sick to my stomach and vomited, and any upcoming buzz was stopped.

Also, for me, there is a clear link between intestinal troubles and my CH, but when I mentioned these 2 here (link with intestine and vomiting), I remember being told it might not be CH I have. But clearly, it is.

I'm one of the few (I think) clusterheads here who doesn't use O2, but it's mostly because I'm very poorly organized. I use ice, applied directly on my temple and neck, and eye. But the pain doesn't reach the eye much anymore.

Luckily, I haven't had to use ice since a long time, the prevention dosings with MM have worked, although the monster has been poking lately.

Light is really not a trigger nor annoying during an attack, but sounds yes, especially if it's someone speaking TO me.

I can hardly believe caffeine can be a trigger, it's such a relief for me DURING an attack.

But then again, I've suggested here before that any trigger can also be a cure: shower, MM... Ice, heat... So I guess, yes, that it's possible that a coffee has triggered you an attack, but I doubt very much that a strong coffee, or energy drink wouldn't help you after the attack has started, and anyways, after an attack has started, what have you got to lose?

Hang on, Grace :-)