I have been on O2 and it has not helped.  I am now taking verapamil, topamaz, and lithium.  I have not had a ch for a week now.  I do still have dripping eyes and the stuffy nose; this has never gone away and a faint headache on the right side persists.  I dont understand why the symptoms never go away.  Any suggestions?

Kat sounds like you have a good mix of prevents. When you say that O2 did not work for you, are you sure that you were using enough lpm and also with the right kind of mask? We have great info here and lots of people to answer questions.

Also for the faint headache try drinking an energy drink such as RedBull or one that has both caffeine and taurine.

What part of the world are you in?

since hearing you all rave about red bull i have some in the fridge and it works most times.  I was on 10 - 15 ml per min of o2 and I am in Idaho.

I hear ppl talk about phantoms and such and wonder if thats what I am experiencing and if perhaps that I have chronic ch's is why the dripping eyes and stuffy nose never goes away.

Kat, how long has your latest bout lasted?  If its just a few weeks, its too early to say you've gone chronic.  My bouts last between 2 and 8 weeks, often with a few intense days of real screamers interspersed with quiet periods where, as you described, I have a minor but fairly permanent headache.  Then they come back (as is happening now).

As my cluster comes to an end, the headaches lose their pain, but not the sensation of my nerves in my head doing the fandango. I get little tugs and shudders and twitches that I can feel deep in my head, but they are not too bad - there can be a quick, sharp pain or two that lasts a few seconds, but nothing horrible.

  Eventually, however, they go completely and peace, tranquility and bonhomie return. Birds sing and butterflies flutter and fornicate joyfully, squirrels gather nuts and Angels do choir practice and all becomes well in my little world. Hopefully this will happen for you too :-)

I have been having ch's for three years on a weekly basis but were treated as bad migraines.  I was taking so much medication and it wasnt working and I was losing my mind with pain.  This year they started coming daily and I could no longer take it. I became a squeaky wheel and the neurologist finally heard what I was saying and with many apologies diagnosed me with ch's and started searching for some relief for me.  I am currently one week into lithium and topomax and 3 weeks of verapamil and o2.  this is the first week in 3 yrs i havent had a ch.  It has been wonderful Buzz. I hope it continues to last.

That's good news Kat :-) It sounds like you've found something that works.  The next step is to see which of the meds you can do without...

I haven't heard of combining lithium, verapamil AND Topomax, but lithium and verapamil is commonly referred to as the "Chronic Cocktail." Will often work as a prevent when all else failed. The reason others asked about HOW you used oxygen is we have found slight changes in how 02 is used can dramatically affect it's ability to abort attacks. Do take a minute to read the oxygen info link on the left and see if there are any suggestions you can use.

Joe

I am no longer seeing the pain management dr whom I told for three years my head was hurting, lol, so I am off of the methadone which never really helped me anyway; but try telling that to a dr who thinks he knows it all, again i have to laugh at that!  I hear what you are saying Buzz, and I am hoping to be able to give up something; where I wasnt sleeping at all before, now I am sleeping way too much, lol.  The pharmacist says it takes quite some time to get used to the lithium especially.  Again, it is so nice to have an entire week pf!! Im celebrating and hoping you all have a week pf!!

I've been using lithium for many years as my prevent. Pay attention when they tell you to really up your water intake. It is a salt and you'll find the first few weeks your body will try to "flush" it as fast as you take it in!

I find a cup or two of coffee is all it takes to counter the effects of the lithium. For the verapamil, increase your fibre intake as it tends to back your system up a little bit. :-/.....actually a lot!

Joe

Does your O2 mask have a bag on it? Are there any open holes on the side?

Do you hyperventalate the O2? Do you get on the O2 at the first hint of pain?

These are all important to O2 use for CH.

Don

With all that medication, I would have to consider the fact that they could be causing rebound (over-medicated) headaches.
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Common Side Effects of Topamax in Adults
Some other common side effects, occurring in 5 to 13 percent of adults, included:
* Sinus infection or irritation
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Faint HA could be a result of Sinusitis, Rebound HA, Meds, or all the above.

Thank you all for your great input. I have been addicted to water for a very long time and drink large amounts, lol. I have a fiber supplement that I am taking for the very reason you gave Joe!  My o2 mask is a full face (think they call it non rebreathable mask) it does have holes in it for exhaling. The o2 was prescribed at 10 to 15 along with verapamil for 2 weeks with no success.  The lithium and topamax has helped a lot until today when I ventured out and the the bright sun and heat really bothered me as it always has.  That being said it is time for my next dose and I believe some ice is in order. Thank you all so much for listening to me.  I dont know much; only what I hear from you, and I do read your posts and appreciate them very much, and what I experience each day in my own life. God bless you all and I wish you all the best and hope you all have as many pf days as possible.

If the mask does not have a bag it is not what we need for CH. Also if the holes on the side are letting in outside air this is bad. They must seal to give you 100% pure O2.

Please read the following link about O2 use for CH. If you have questions pls ask. Using O2 properly for CH is very important for success, and the proper setup which most Dr's have no clue about. Educate yourself about it.

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Don

Sorry Don, I didnt give full details, the mask has a bag and holes for exahaled air to go out. when i inhale it comes from the bag where the oxygen is stored and exhaled thru the holes. Is this the correct mask to have?

Kat, yes that's the correct mask, the problem can be the holes, if one side doesn't have the flap on it, that lets in outside air when you inhale. if that's the case you need to tape the open side shut to get pure O2 and no outside air.

You can get the best O2 mask right here on CH.com store, the O2PTI, I have 2 and they are made just for CH.

Don

Joe, I know you also have chronic ch from reading your posts.  Do your eyes drip, nose stuffy and drip constantly and does your ear drain?  Mine do all the time.  :o

Hey, Kat. I've had CH for 23+ years now, and have been chronic for the past 3. And yes, I feel the residual effects of the last hit for some time after the episode itself. Not the eye and nose thing so much, but several of us have talked about noticing a connection between CH hits and sinus/nose problems. My ear rings a lot, too. And one other thing on the mask-even if the mask comes with a valve on one side (that little plastic circle) but open holes w/o a valve on the other, you're getting outside air. No need for either side to be open on intake. I've made a valve out of candy box cardboard or soft plastic that works well. Blessings!

i have so many quesrions and i hope you donr mind ....  does brigt lights, especially sun light and hea trigger your ch because they sure do mine ... and i get chilled one minute and am burning up the next.

I'm not a doctor, but I am a veteran of the cluster wars. From what I have read here and in articles, plus from my own experience, I would say Clusterheads aren't typically affected by either light or sound. Think of it like this: stick a pin in your leg while in a brightly lit or noisy room. The light and sound do nothing to help you, but they don't add to the pain, either. CHs are the result of trigeminal nerve involvement triggered somehow by a screwy hypothalamus. And anything would appear to be a trigger: heat, humidity, rest, exertion, all can be sufficient to kick one off, but aren't necessarily going to do so. I don't get the on/off body temp sensations you're describing but we are talking the hypothalamus here, which among other functions, is responsible for regulating body temp. Blessings!

Kat wrote on Jun 11^th, 2010 at 12:08am:

Joe, I know you also have chronic ch from reading your posts.  Do your eyes drip, nose stuffy and drip constantly and does your ear drain?  Mine do all the time.  :o

Kat, Joe is actually episodic - just having a long cycle this time. Nose runs and eye turns red and is droopy but does not water. These symptons only present during CH attacks or heavy shadows. He has no ear problems.

I'm his wife, he's just heading out the door so I showed him your post and that's what he said to tell you.

Christy

Kat,

From my own experience and what others have said, some people feel that heat, barometric pressure, humidity, etc seem to effect them. I even read a post that said they could predict thunderstorms by the pressure building towards an attack. However that is all anecdotal and it is hard to say if what effect's the heat, sunlight etc have. My wife has definitely noticed I get more attacks prior to and during thunderstorms and since she told me that I have noticed it as well. The problem with these damn things is they change so much over time and the triggers are pretty much spread across the spectrum except alcohol which seems to be a trigger for  90% plus of us. Just my 2 cents.

David

Thank you all again, I was beginning to get the idea that ppl are affected in different ways and have different triggers.  My neurologist has said to stay away from alcohol and so i do; never was a big fan anyway; my addiction is water, lol, and it sounds like that is a great addiction to have.