I had one he!! of a CH last night.  I was taking a nap after work and woke up deep into a Kip 9-10.  10 minutes of O2 and only a slight decrease in pain.  2 tylenol 3 and 2 500mg tylenol tried after 15 minutes of minimal oxygen effect.  This will usually kill it.  40 minutes after tylenol and still a K9.  Much oxygen and pacing later, probably about two hours into the headache and still no letting off.

I went into the bathroom and looked in the mirror.  I usually have mild swelling and bulging of the eye on the effected side.  This scared me though.  My right eye was  bulged out at least 3/8-1/2 inches further than the left eye.  :o

That scared me.  I have never had it that bad.  After that I started slamming coffee.  three cups later the headache finally started to go away.  It lasted in total 3.5 hours.  After that I took 15mg of melatonin and made it all night without interruption from sleep except for peeing out all of that coffee.

Is there a point in which 911 becomes necessary?  That extreme bulging scared me.

The clusters just came back after 14 years absence and they came back worse than I ever remember them being.

Taking narcotics for CH is known to cause this kind of attack. During a K-10 there is no way I could all 911. 1st you must know what you want them to do, they will know little if anything about CH. I can not picture that scene.

I strongly suggest you find better treatments for your CH than narcotics, I have been there done that, even morphine didn't help me. Read around this website and you'll find very few saying they get help from narcotics. We've tried and learned.

Don

Quote:

Much oxygen and pacing later, probably about two hours into the headache and still no letting off.

I think your first post here on the "getting to know ya" board was a similar experience. 


Quote:

I woke up with one so bad this morning that the outside of my head hurts.  It's very sensitive to touch.

It appears no preventative was started this episode, and oxygen is your only way out.  It can be a hard go even for oxygen when waking to a runaway hit peaking, and this can happen.  What you were looking for was a back up abortive, like Imitrex, which you don't have.

What can work for these times more successfully than oxygen alone, and some here do this, is to keep some Red Bull, Monster or Starbuck's Double Shot in the refrigerator.  If you can immediately get to them and guzzle one, then quickly get on the oxygen, it can REALLLLLY help.   


Quote:

I started slamming coffee.  three cups later the headache finally started to go away.  It lasted in total 3.5 hours

The three coffees may have helped, but far after the fact.  Enduring that long, and I know it's hell, could be prevented much sooner. 




Quote:

The clusters just came back after 14 years absence and they came back worse than I ever remember them being.

Don't underestimate it's capacity for pain.  Slamming an energy drink at the first moment and hitting the oxygen won't save you any sleep, but getting rid of the pain is an important trade-off.

If you're seriously considering self-harm, or doing something all of us here will regret, then certainly call an ambulance.

We can also help with phone numbers for the various crisis and help agencies.

No need to post publicly, simply PM anyone here you think you can trust.

That's why we're here, mate.

We care about ya.

Hi Eric,
Go get some energy drinks containing Taurine and Caffeine such as Redbull, Monster, Rockstar, etc whatever floats your boat....slam it as fast as you can, no need for anything larger than a typical 8 ounce energy drink can, chug it fast at onset of attack.

The melatonin taken 30 minutes or so before bedtime has also proven helpful to many by reducing their night time attacks and/or reducing the pain intensity of night time attacks.

The o2 is going to be your savior!  It is the least expensive and safest abortive treatment available for CH's.  But it only works if you use it correctly.  It actually can get a little tricky, but with practice and paying attention to the basic rules of o2 use for CH's, you will be very pleased! 

Please help us, help you, by answering the following questions about your o2 use...
1. Do you have a medical prescription for it or are you using welders o2? 
2. What flow rate are you using or are you using a welders regulator? 
3. Are you using a NON-rebreather mask with a large bag attached to it that inflates/deflates as you use the o2? 
4. Are you hyperventilating your o2 ir just breathing normal? 
5. Are you sitting upright/standing or laying down using the o2? 
6. How long do you use the o2 before you turn it off?
7. at what point of your attack do you begin using o2...immediately at onset, after several minutes pf pain or when?

Your answers to these questions about your o2 use will make or break your o2 experience.  Please share your answers and we can better help you achieve fast aborts with o2.

Stay away from the OTC (over the counter) pain relievers and stay away from narcotics.  We know more here than most of the medical community and have learned OTC and pain meds contribute to a worse cycle in many ways.  Just stay away, trust us on this advice!

Do you really want the ambulance arriving with the sirens and lights flashing and your neighbors looking and having to explain to the paramedics what you need to abort your attack, just to be possibly be told..."That is not the way we handle headaches...here Eric, take these two aspirins, call us when you really have an emergency, now go back to bed and get some sleep."  It is truly possible you might be provided such ignorant advice as i'm sure you've learned, most of the medical community doesn't understand CH's. 

Why go through that possible scenario if you don't have to...and you don't have to.  You may feel like you have to call 911 when you are in a high KIP, but you really don't have to. 

Then again, it's your life, call 911 if you really feel the need, but do consider some facts....the cost of money and the cost of time and the cost of aggravation explaining to paramedics/EMTs/hospital employees/neighbors/etc who most likely will not have a clue how to help you...

....compared to the cost of doing it on your own by obtaining the energy drinks, melatonin, some ice packs or frozen peas and all the o2 supplies (tank, regulator and mask)....ideally you get to a good headache specialist and begin preventative treatment ASAP.   We can recommend a good doctor close to you who is familiar with CH's.  Where in Central NY do you live?

Help us, help you, answer some questions and hang tough!  You are certainly not alone here.  We understand your pain and frustrations. ;)

-Gregg in Las Vegas

Thanks for the replies folks.

The main reason I was asking about the ambulance was the intense swelling behind the right eye.  Can these or have these headaches ever gotten so bad that it pops a vein or something like that?

I tried some red bull this morning when I woke up with one to little effect.  At lunch I picked up some 5 Hour Energy (EXTRA) which has the taurine in it.  I just used it (VERY SUCCESSFULLY) to get rid of another one about an hour ago.  I waited too long again to get to the oxygen in my truck and it wasn't killing it again.  Within 10 minutes of the 5 Hour Energy the headache began going away quickly.  Dayum can you feel the energy from that kick in quick.  My hands are twitching now from the energy burst.

Las Vegas' Questions:

Please help us, help you, by answering the following questions about your o2 use...

1. Do you have a medical prescription for it or are you using welders o2? 

- Welders O2

2. What flow rate are you using or are you using a welders regulator? 

- Welders Regulator

3. Are you using a NON-rebreather mask with a large bag attached to it that inflates/deflates as you use the o2? 

- Customized rig that I put together 14 years ago that works surprisingly well.  It involves a keg fridge air line and a momentary switch type air nozzle to control the flow.

I will try to attach a pic of the setup, fingers crossed

4. Are you hyperventilating your o2 ir just breathing normal?

- I fill my lungs, hold it in then exhale and repeat.  Some of the breaths I compress in my lungs to force it into my system (Simulated Hyperbaric O2)

5. Are you sitting upright/standing or laying down using the o2?

- Start by sitting upright, sometimes lay down if I know it's going to be a while.

6. How long do you use the o2 before you turn it off?

If it doesn't work within the first 15 hits, I'll take a break, pace around at a good pace to get the blood flowing, then go back to the tank and try again.

7. at what point of your attack do you begin using o2...immediately at onset, after several minutes pf pain or when?

The sooner the better.  If I can tell that one is coming on and get to the tank as soon as I know, I can usually knock it right out.  But if I wait even more than a few minutes, it is not as effective.  If I wait too long or wake up with a boomer, the O2 only helps to lessen the pain.

Once again, I was just curious if the ambulance is ever necessary to prevent a hemorrhage?

Let's see if the pic will attach.  It's actually quite an efficient and good O2 setup.  This is the small tank.  The other one is the size of a scuba tank and will last about a week.

---

Eric, you sound serious to help yourself, so please take the following criticism constructively.  You are using o2 incorrectly and that is why you are not as successful as you could be and hopefully will be.

You truly need a NON-rebreather mask.  Order it from the ch.com store-yellow tab on your left side of the screen, ships within 2 days, it's worth it's weight in gold.  With all due respect your rig from 14 years ago is quite impressive, however just not able to compete with a NRB mask with 3 litre bag and 6 ft hose.

Stop holding in your breath, you refer to it as a "hit", and exhaling, then repeating.  You must hyperventilate as fast as you can for as long as you can.  It is tough work, but it is the optimal abort method.  The concept is to rid the co2 buildup which is the culprit causing inflammation of your trigeminal nerve which creates your pain.  Breathe in the o2, breathe out the co2, as deeply as you can inhale, as deeply as you can exhale, as fast as you can, as if you just ran a marathon, as if you are a panting dog in heat, as if you are having an asthma attack, i'm serious, this is truly the fastest and most effective method.  The NON-rebreather mask (with 3 litre bag attached) you will order called an Optimask is designed for this type of hyperventilation.  Don't be alarmed when feeling lightheaded and coughing, this is a common side effect, along with a tingly sensation at your mouth and fingertips.

Good you have welders o2, then you have no prescription challenges of getting as much as you need whenever you want.

Good you have a welders regulator because the high flow rates are required to hyperventilate.  Welders regulators do not have lpm (litres per minute) but don;t be concerned of that, welders regulators will provide a higher flow rate than you can compete with.

Giving up after "15 hits" or so is a major problem.  Remember you are no longer taking hits, you are hyperventilating/breathing as fast as you can, as deeply as you can, inhale as deep as you can, then exhale as deep as you can til the wind is knocked out of your stomach.  Plenty of o2 "how to" threads available on this site...yellow tab on left.  Many can abort an attack with o2 after 5 minutes of effort.  then to avoid a repeat attack and/or rid the potential of a quick co2 buildup...lower the flow rate and breathe normal for an additional 5 or 10 minutes after the abort.  Then live life large between the attacks! ;)

Sitting upright, excellent to read.  Standing and sitting upright are preferred posture during o2 therapy because your lungs are wide open which provides you to maximize your breathing.  On the contrary, laying down and using o2 is counter productive as your lungs are somewhat obstructed in this laying position.  So always hyperventilate standing or sitting upright.

Excellent you recognize the priceless value that you must get on the o2 at onset of attack, the sooner the better.  If you wake up with pain, you are already lacking time and need to move quickly to get that mask to your face and begin hyperventilating.  If you can not get to the o2 before you reach a KIP 5, chances are you will have serious challenges aborting with o2 on that particular attack/attempt of o2 therapy.  The sooner the better!

Do you have a headache doctor from 14 years ago?  Where in Central NY do you live?  I'm going to research NY for you and provide you a list of recommended doctors.  You truly need preventative treatment, as abortive treatments are only the quick fix.  The goal of preventative meds is to reduce the frequency of attacks, minimize the intensity of the attacks and shorten the cycle.  Not all preventatives work.  What worked for somebody last cycle, may not work this cycle, as the beast morphs, it is all trial/error, but you must be knowledgeable moreso than your doctor so you are not prescribed a med and/or a dosage that is known to be worthless.

As for your bulging eye...I personally have never heard of this specific side effect of a CH attack, however you should get it checked out if it continues to concern you.  Hopefully others from this board will chime in with their thoughts of this swelling/bulging eye issue.

Below is a long list of recommended doctors in New York who are familiar with CH's, updated 5-20-2012 from the OUCH website.  Hope this list helps you get into see somebody quickly for preventative treatment.

-Gregg in Las Vegas

"[u]New York[/u]
Bay Shore:
Dr. Norman L. Pflaster South Shore Neurologic Associates

Bronx:
Dr. Randall G. Berliner Regional Neurological Associates
Dr. Seymour Solomon Montefiore Medical Center
Dr. Derek G. Randall

Camillus:
Dr. Kevin W Thomas FamilyCare Medical Group – Neurological Division

Canandaigua:
Dr. Robert S. Knapp Ontario Neurology Associates

Cedarhurst:
Dr. David Steiner Five Towns Neurology

New York:
Dr. Mark W. Green␣ Mount Sinai Center for Headache and Pain Medicine
Dr. Alexander Mauskop New York Headache Center
Dr. Lawrence C. Newman The Headache Institute St. Luke's Hospital

Owego:
Dr. Keith Nichols (PCP)

Rochester:
Dr. Gilbert Proper Pain Symptom Management Center␣
Dr. Joseph I. Mann
Greater Rochester Neurological

Schenectady:
Dr. Bruno P. Tolge Schenectady Neurological Consultants and the Headache Center of Northeastern NY␣

Stony Brook:
Dr. Patrick E. Poole

White Plains:
Dr. Ronald M. Silverman Neurologic Consultants of Westchester

Williamsville:
Dr. Peter R. Kinkel Kinkel Neurologic Center"

Quote:

You truly need a NON-rebreather mask.  Order it from the ch.com store-yellow tab on your left side of the screen, ships within 2 days, it's worth it's weight in gold.  With all due respect your rig from 14 years ago is quite impressive, however just not able to compete with a NRB mask with 3 litre bag and 6 ft hose. Stop holding in your breath, you refer to it as a "hit", and exhaling, then repeating.  You must hyperventilate as fast as you can for as long as you can.  It is tough work, but it is the optimal abort method.  The concept is to rid the co2 buildup which is the culprit causing inflammation of your trigeminal nerve which creates your pain.  Breathe in the o2, breathe out the co2, as deeply as you can inhale, as deeply as you can exhale, as fast as you can, as if you just ran a marathon, as if you are a panting dog in heat, as if you are having an asthma attack, i'm serious, this is truly the fastest and most effective method.  The NON-rebreather mask (with 3 litre bag attached) you will order called an Optimask is designed for this type of hyperventilation.  Don't be alarmed when feeling lightheaded and coughing, this is a common side effect, along with a tingly sensation at your mouth and fingertips.

I beg to differ, Gregg. Some people I know on this board successfully abort their attacks in 5-7 minutes using a method very similar to Eric's, myself included.

Myself, I use a demand valve, breathe very deeply, exhale at a moderate speed, and repeat. Just a complete saturation of the bloodstream with O2. Hyperventilation is one way to achieve this - efficient use of the O2 is another.

I used to force myself to do it as fast as possible. Then I found that I didn't necessarily need to do that.

The common denominator is breathing in 100% O2, however.

Thanks Bill. ;)

Brew wrote on Oct 4^th, 2012 at 10:17pm:

breathe very deeply, exhale at a moderate speed, and repeat. Just a complete saturation of the bloodstream with O2. Hyperventilation is one way to achieve this - efficient use of the O2 is another. I used to force myself to do it as fast as possible. Then I found that I didn't necessarily need to do that. The common denominator is breathing in 100% O2, however.

Same here.   

There will be the tough ones to knock down, so I know to keep an ice pack to bide the time.  And times when I'm waking every two hours for the oxygen.  When it gets past 4am, I just grab the Double Shot and stay up, then call the doc in the morning and tell him I'm upping the verap again a little so this doesn't continue much longer. 

It's important with the ups and downs managing this that you have the routine or ammo to stay on top.  This time of year, and spring it seems, there is a flare of activity happening.  If episodic, there is the tendency to not be prepared adequately sometimes.  As a chronic, preparedness is routine.

911 for your eye, in order to back down your worry, the parameds would need to abort your cluster.  They would have oxygen, which you already have.  The ER is more time-consuming and the same applies there.   But as for any harm to your eye, I have never seen that posted here. 

Try to work on getting that big one down, have ammo.  I use some prevention, and even have back-up trex, which I haven't used in over 5 years, but still carry.   The availability of espresso, a double I'll bang down straight, is all around.  It's been so helpful, I stopped bringing oxygen in my car to work long ago without worry after I put down some K 7's I let get away from me several times in the midst of a busy day.   Wipe the tearing, blow some snot and moving on.  Feels great.

Just knowing you have something that will be successful on hand to overrule any hit kills a lot of worry.   

Thanks everybody.

  Hopefully I'm not the first to have an eyeball shoot out of my head, lol.

This cycle sucks bad though.  The past week has been five plus per day.  It seems like it won't quit.  Only a few of those were difficult to abort. 

Now if I can only keep the depression, despair, and irritability  tamped down.

Eric

Eric in Central NY wrote on Oct 6^th, 2012 at 1:14am:

Thanks everybody.   Hopefully I'm not the first to have an eyeball shoot out of my head, lol. This cycle sucks bad though.  The past week has been five plus per day.  It seems like it won't quit.  Only a few of those were difficult to abort.  Now if I can only keep the depression, despair, and irritability  tamped down. Eric

You're very welcome Eric ;)

There is no doubt that the depression, despair and irritability side effects of CH's have altered my life for the worse because I didn't cope as properly as I could have. 

Nobody can tell you this is easy to get through, because it is a living nightmare!  Just try to remember the reason you are feeling the way you are is because of something (for the most part) beyond your control and that is when you must recognize you need to be strong and focus on the positive aspects of your life.  There's a good ole saying around Clusterville..."Live between the hits!" ;)

-Gregg in Las Vegas

Gregg and Bill both brought up good points.  Each of us have to learn what works best for us on the O2  The key is a high enough flow rate.  I personally prefer the O2ptimask (Gregg referred) with the 3 liter bag with as much O2 as I can get.  I do all I can to hyperventilate, but usually don't reach it although I suck the bag flat at 25 lpm. 

5hr Energy is a preference of mine also because I can get it all down so much more quickly than the others and I don't have to taste as much of it. [smiley=hurl.gif]  (not quite that bad, but...)  It is also very handy to carry with you so you don't get caught without any ammunition when out in public.  I carry at least one in each of my vehicles, one in my computer bag, and one in my pocket.  I hate getting caught out when I have forgotten to replace an empty in my pocket!

As to the eye bulge, I don't believe you have anything to worry about, but it should be checked out by your Eye Doc just to be certain there is nothing else going on.  Mine bulges also, but my doc has not found any permanent damage.  That brings up a different matter though all together.  When was your last MRI/MRA?  You said it has been 14 yrs.   I strongly suggest you be seen post haste to be certain there is not something CH like in symptom that is much worse.  It most likely is not, but I'd rather have you spend the money on checking it out and find nothing wrong than on a casket because it was not checked.   

All the best,
Jerry