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the Aftermath (Read 2976 times)
Cassandra
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the Aftermath
Feb 27th, 2010 at 9:38pm
 
Ok.. so I started getting these when i was 18 (i am now an old fart of 30) when i used to get them.. I could bounce back like i never got them..

When i was 23, right after i had my son.. I needed to take a small nap and then right back up again. I am starting to notice that this time, it's not so easy.

Take today.. I got one (kip8) lasted about 1.5hrs.. the time between when i knew the beast was coming, and the time when i just couldn't do anything except be in the zone was longer then normal (I had thought i got out of it.. just a bad shadow)

Well when it ended i was whipped.. that was about 2pm.. I am still exhausted. all i want to do is sleep. This keeps happening, it's like its slowly taking everything out of me. I can take a nap, but i am crawling to bed at night.. Can't ever keep my eyes open..

Anyone else having this happen to them?

Love you all
Cassandra
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Re: the Aftermath
Reply #1 - Feb 27th, 2010 at 9:47pm
 
Do you have anything you use as an abortive? Oxygen? Imitrex?  I guess by comparison, when my attacks first started I was 18-19. They hurt like hell but like you say I'd just bounce back up when they were done with me. They didn't hit their stride until my mid 20's. That's when I learned what KIP 10's were. A 90 minute ride that ramped up to a 10 left me beat up for 2-3 days.

I'm a young man of almost 50 now. Wink I'm in the middle of a cycle now and go NO WHERE  without my oxygen tanks.

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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Cassandra
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Re: the Aftermath
Reply #2 - Feb 27th, 2010 at 9:55pm
 
i really don't have anything to stop them.. i just deal with them. I have been trying a few things currently, but The fight for people/doctors to believe me is just too much for me.

A few years ago, i moved back down to Md.. and was refered to a nero. Well i was on Topamax, and i told her that i had been on it for a while cause my primary gave them to me. Well she asked how many times a day i was getting a cluster.. and because i was taking the med.. i was only getting an average of 2-3 a day.. Well of course she said that i didn't have clusters.. So i am very hesitant on seeing any new doctors.

I am trying the energy drinks, melitonin, and over the counter headache meds (though i know they aren't working.. but i dare not take them)

I went to the hospital once, and they put me on O2 and it never worked...
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Re: the Aftermath
Reply #3 - Feb 27th, 2010 at 10:13pm
 
Ouch. The key to managing cluster headaches is aggressive action on your part. On cycle or off cycle, work at getting to either a knowledeable neuro, or at least a general practitioner who is open to the information you bring them.

If you're not already doing so, keep a diary of your headaches. When they start, how fast they build, how high they go, how long they stay at peak, how fast they go away. What meds you take that have and have not worked, and try to identify any triggers.

Then work on getting a doctor who can deal with the long term issue of cluster headaches. Your diary will go a long way towards getting a diagnosis and some treatments that'll help you.

And really watch the over the counter stuff.......we recently hospitalized my father for the upper GI ulcer, the bleeding bladder and the almost shut down kidneys his over use of ibuprofen had caused.

Joe
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Re: the Aftermath
Reply #4 - Feb 27th, 2010 at 10:21pm
 
Do some looking for a headache specialist, not just a Dr or Neuro.  You need someone who knows what CH is and what it does, with or without Topomax. 

you said you once went to the hospital and they gave you O2 and it didn't work.  I wasn't there, and you didn't say, but I'd give 10-1 odds they gave you less than 15lpm and without a non-rebreather mask.  If I'm right I can guarantee it didn't work.

Read the oxygen info to the left of your screen and read it until you have it memorized so that you can say NO! if your Dr wants to give you anything less.  Then go the the CH.com store and order the O2ptimask.  It is worth twice the little bit they charge for it.  If at all possible get a prescription for at least 25lpm rather than 15.  15lpm may work for you, but I have found 25 to work MUCH more quickly.  I used to say it didn't work for me either, but that was at 15 lpm and with the old non-rebreather mask.  Last summer I was convinced to try again at 25 lpm and with the O2ptimask and I can knock out a hit within 5-8 mins.  This evening I got hit with a K9 (first that high in a couple of years) that ramped up within 30 seconds.  I couldn't even get the oxygen on, but my wife was able to do it for me and handed me the mask.  I didn't even get it on right side up, but pressed it close enough to get a seal and it worked.  I don't dare go without O2.

Jerry
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Batch
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Re: the Aftermath
Reply #5 - Feb 27th, 2010 at 10:30pm
 
Cassie... Phoebe...  Zen Kitty,

Don't be a dummy...  Get back on your oxygen...

Drink some lemonade with lunch and dinner too...  and don't forget the calcium citrate tablets with vitamin D, magnesium, and zinc.

I'm surprised your tribe hasn't opened a can of "Whup up on Mom" for not using the oxygen...

Hugs and take care.

V/R, Batch
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Re: the Aftermath
Reply #6 - Feb 27th, 2010 at 10:37pm
 
For real the oxygen does work
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Re: the Aftermath
Reply #7 - Feb 28th, 2010 at 4:55am
 
It's painful to read how defeated and discouraged you are...

But there is little we can offer over the internet except some sense of direction and encouragement. Time to regroup and get established with a doc who knows the ropes.

You are so close to Baltimore and a major center of medical excellence--use it!

====

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register Look for "Physician Finder" search box.  Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.







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Re: the Aftermath
Reply #8 - Feb 28th, 2010 at 6:44am
 
Batch wrote on Feb 27th, 2010 at 10:30pm:
Cassie... Phoebe...  Zen Kitty,

Don't be a dummy...  Get back on your oxygen...

Drink some lemonade with lunch and dinner too...  and don't forget the calcium citrate tablets with vitamin D, magnesium, and zinc.

I'm surprised your tribe hasn't opened a can of "Whup up on Mom" for not using the oxygen...

Hugs and take care.

V/R, Batch


Batch-
Why the lemonade?  How much Calcium, magnesium, and zinc?

Thanks-
Joni
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Re: the Aftermath
Reply #9 - Feb 28th, 2010 at 11:21am
 
you all know you dont need a doctor to get o2. you can rent bottles from linde, praxair or delil. i get mine from tractors supply. yokes regulators and adapters are available on ebay. what you spend on co-pays and gas running around you can probably pay for that stuff. im not telling you to stop going to the doctor im just saying you don't need them to get o2.  o2 is a must no matter how you get it
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Re: the Aftermath
Reply #10 - Feb 28th, 2010 at 9:43pm
 
Cassandra wrote on Feb 27th, 2010 at 9:55pm:
I went to the hospital once, and they put me on O2 and it never worked...


You gotta catch it at the onset, and administer it as described in the oxygen info link.

I find the best way to avoid being wiped out by a kip 8 is to abort it before it ever gets there. Hope that doesn't sound too smart alecky, but this is possible, and we'd love to see you getting onboard with it.
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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.
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Re: the Aftermath
Reply #11 - Feb 28th, 2010 at 9:47pm
 
Quote:
(i am now an old fart of 30)

Watch it, noob. Grin
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Batch
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Re: the Aftermath
Reply #12 - Mar 1st, 2010 at 3:40pm
 
Hey Joni,

Good questions…  The short answers follow: 

With the exception of an occasional snort of imitrex nasal spray during airline flights, I take no cluster headache preventative or abortive medications except 100% oxygen at flow rates that support hyperventilation for my chronic cluster headaches…  Instead, I take four (4) to six (6) of the calcium citrate tablets with vitamin D, magnesium and zinc as well as two to three 8oz glasses of lemonade a day as my preventatives during high cycles…

Aside from being big as horse pills, I take generally take 4 of the Kirkland brand of calcium citrate tablets with vitamin D, magnesium, and zinc a couple hours after breakfast and two more a couple hours prior to the evening meal.  I get mine at Costco under the Kirkland label, but Citracal Bone Density Builder™ has nearly the same formula…

Taking twice to three times the recommended daily dosage of these mineral supplements may have contraindications with other prescribed medications you may be taking so it's best to ask your doctor prior to taking this much…  I did and got a green light.

Regarding the lemonade…  As strange as it may sound, the citric acid in lemonade can actually raise a low arterial pH making it more alkaline.  During high cycles, I drink an 8oz glass of lemonade with lunch and two with dinner.  See the charts in following links for information on lemon juice and other alkaline forming foods:

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I also make my own lemonade with 1 cup fresh squeezed lemon juice, 5 cups water & ice cubes, and I sweeten to taste with a half to three quarters cup Splenda.

Please understand this regimen doesn't work 100% of the time.  Having said that, I've found it to be just as effective if not more so than any of the prescribed preventatives I've taken in reducing the frequency and intensity of my attacks.  It costs pennies a day, at my age, I need the calcium with vitamin D anyway, and there are no side effects…  In other words, maximum reward, minimum cost, and no risk…

I'll caveat this further by saying only a handful of us have been using this regimen.  Although it's been effective, the amount of data collected is still small so any claims are still anecdotal. 

Now for a longer answer with some of my logic and rationale behind using this regimen…

I use this regimen based on the simple premise that if you can measure a process, it can be managed and controlled… 

Most of us use this same premise on a daily basis, but never give it a second thought.  For example, when we start our car we glance at the engine instruments…  No red lights… the oil pressure is up, the engine sounds good and away we go…  We also watch our fuel gage and stop for gas when it gets low…

In short, we monitor the processes associated with the operation of our cars and act accordingly.  There's also an implied relationship between knowing something will happen if we don't take action…  i.e., if we let the fuel gage go to zero, we run out of gas and we'll need to walk to a gas station or call AAA.

Our bodies and cluster headaches also run on a series of processes except we don't have a dashboard display to monitor them…" We just know when we feel good and we know when we hurt… 

If we keep track of the number of hits we have a day, we also know when the frequency of our cluster headaches is going up or down…  There are also ways of measuring some of the key parameters like saliva pH as well as oxygen saturation and CO2 concentrations at home…

I measure my saliva pH with test strips from pH ION any time the frequency of my attacks start to rise…  Saliva pH strips provide a reasonable indication of arterial pH.  These pH measurements are slightly lower but they parallel arterial pH according to available literature…   Experience has taught me if the frequency of my attacks starts going up and my saliva pH is going down, I'm going into a high cycle so I start the regimen of minerals and lemonade. 

My use of this regimen as well as oxygen therapy at flow rates that support hyperventilation is based on the relationship between arterial pH and cluster headaches…  When my arterial pH is low (too much acid), the frequency and intensity of my cluster headache attacks is higher (an average of 3 attacks a day)…  As a result, my aborts with this method of oxygen therapy tend to take a minute or two longer.

When my arterial pH is neutral or higher than normal (more alkaline), the frequency and intensity of my cluster headaches tends to be lower (an average of 3 attacks a week).   I've also gone up to 10 days without a cluster headache attack by taking 4 to 6 calcium citrate tablets and drinking 2 to 3 glasses of lemonade a day.

Although mineral supplements and lemonade appear to influence arterial pH, at least when measured with saliva pH strips… arterial pH is primarily controlled by the following chemical equation through changes in respiration rates.

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When we realized in 2007 how effective breathing 100% oxygen at flow rates high enough to support hyperventilation was in aborting cluster headache attacks, we started an informal pilot study that collected data on over 600 aborts with oxygen therapy.  366 of these aborts were collected and submitted by six participants using the new method…  The results were consistent with very short abort times… 

We also began researching related clinical studies to determine how and why this method of abortive therapy was so effective with very short abort times…  The respiratory physiology and blood chemistry behind this method of aborting cluster headache attacks were right in front of us…  All we needed to do was connect the dots.

If we remove CO2 from the blood in the above equation by hyperventilating on 100% oxygen, we lower the level of carbonic acid (H2CO3).  When the carbonic acid content of the arterial blood is lowered this also elevates the arterial pH making it more alkaline.  The net result is cerebrovascular constriction and more oxygen going to the brain because hemoglobin has a greater affinity for oxygen as the pH rises above normal…

The following chart illustrates the results of a related two-week study I conducted with the assistance of Michael Berger and Royce Fishman…  We wanted to examine the relationships between my daily average saliva pH, saliva pH at the start of my cluster headache attacks, and the effect of aborting my attacks with oxygen flow rates that support hyperventilation on saliva pH.

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The green line on this chart represents the average pH of three measurements taken daily using saliva pH test strips.  I took these measurements in the morning before breakfast, around 11 a.m. prior to lunch, and in the evening just prior to bedtime… 

The red dots and lines represent my saliva pH measured at the start of a cluster headache attack.  The blue dots and lines represent my saliva pH measured 5 minutes after competing aborts with oxygen therapy at flow rates that support hyperventilation. 

These aborts all took 3 to 5 minutes as the attacks that woke me up from sleep were already at an average pain level of Kip-4 by the time I started on oxygen.   Waiting an addition 5 minutes after the abort with oxygen therapy before taking the second saliva pH measurement allowed time for my saliva pH to equalize with my arterial pH.

I also started using a finger pulse oximeter on Day-7 of this study.  I took these oximetry measurements as soon as I awoke with a cluster headache attack and again 5 minutes after the abort with oxygen therapy… 

As you can see, my oxygen saturation was low at 93% down to 90% upon waking up with an attack (hypoxic), and fully saturated at 99% five minutes after completing oxygen therapy (hyperoxic).

I recently had the opportunity to measure my CO2 levels with a portable capnometer.   These devices provide an indication measured in mmHg of the partial pressure of CO2 present in the breath we exhale at the end of the exhale cycle.  This is called the end tidal CO2 (ETCO2) and it correlates inversely with arterial pH.  In other words if the ETCO2 is high, above 45 mmHg, like it was when I woke up with a cluster headache, it indicates the CO2 level is higher than normal.  That's also a clear indication my arterial pH is low.

Under normal conditions, ETCO2 is generally close to 40 mmHg.  After aborting a cluster headache by hyperventilating on 100% oxygen my ETCO2 was between 20 and 30 mmHg indicating I'd cast off sufficient CO2 to raise my arterial pH and push my system into respiratory alkalosis.

The following graphic illustrates relative vasoactivity associated with variations in oxygen concentrations, pH, and CO2 concentrations…

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As you can see, if you push all three measurements up into the green by hyperventilating on 100% oxygen and holding it there for 2 to 4 minutes, you're doing everything you can to stimulate vasoconstriction and that should result in a very short and very reliable abort of your cluster headache attacks.

There's a corollary to "three in the green" on the above chart where you get rapid and reliable aborts… 

For example, if you breathe oxygen therapy at 7 to 9 liters/minute or even as high as 15 liters/minute to abort a cluster headache attack, you'll push your oxygen saturation up to nearly 100%. 

However, if your level of physical activity is higher than normal, i.e., dancing in circles or rocking back and forth pounding on the side of your head, you'll generate more CO2 than if you were sitting quietly.  If the volume of lung ventilation is restricted to the regulator flow rate and the use of a non-rebreathing mask, there may be insufficient lung ventilation to keep CO2 levels in the normal range and CO2 levels will build above normal. 

When that happens, arterial pH will also drop and hemoglobin will carry less oxygen to the brain.  At that point you'll have one in the green and two in the red…  and that means the probability of a successful abort with oxygen therapy will be low to nonexistent…

Hope this helps and the long answer wasn't too long.

Take care,

V/R, Batch

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Re: the Aftermath
Reply #13 - Mar 1st, 2010 at 3:53pm
 
So THATS why you drink lemonade. Wink
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Re: the Aftermath
Reply #14 - Mar 1st, 2010 at 8:29pm
 
Jimi,

Correctamundo...  Granted it was long winded answer why I drink lemonade, but that's my story... and I'm sticking to it...

I discovered how effective lemonade could be when Joyce and I took a 7-day cruise out of Long Beach, CA to the Mexican Riviera last year... 

I might add my oldest son picked up the tab, and this was the first cruise in 40 years where I went cruising on a boat that wasn't painted haze gray with catapults on the pointy end and arresting gear wires on the blunt end... that I didn't land on in a jet...

I ordered two M-60s from OXYTRAVEL ® and ended up packing them the length of the boat to our state room...  The cruise line porters wouldn't touch them... 

We had a half gallon of pre-mixed margaritas that Joyce prepared and a 40 pounder of Bacardi in the state room, so I ordered lemonade with dinner each night when I found they were charging $14 for a dinky glass of wine...

I went the entire 7 days without a single hit...  and never touched the two cylinders of oxygen...

I had averaged 3 attacks a night for the three days prior to the cruise, so having no attacks for the next 7 days was an eye opener...  The day the boat pulled into Long Beach, I didn't drink any lemonade and got whacked three times that night...  I went back on the lemonade with lunch and dinner the next day... and slept like a baby that night...

The following day all I took was the calcium citrate tablets and I got nailed twice during the flight back to Dulles...

Needless to say I went back on the lemonade as soon as we got home and sailed through the next ten days without a hit... 

I know we're all wired differently... but go figure... and see if you come up with the same conclusions.

Take care,

V/R, Batch
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Re: the Aftermath
Reply #15 - Mar 1st, 2010 at 11:31pm
 
This is so interesting, Batch.  I'll have to get my daughter to translate it to me...haha.  I love reading about different things like that and especially when someone is taking data.  Also, it is so nice that it works for you and at the same time you realize everyone is different.  Thanks a bunch!!!!!
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Experience:  That most brutal of teachers.  But you learn, my God do you learn.  -C. S. Lewis
 
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Re: the Aftermath
Reply #16 - Mar 2nd, 2010 at 8:38am
 
Batch hasn't told me about the lemonade till now, but the Calcium citrate tabs worked for me when I was in Houston and hit a high cycle. He did "yell" at me to get to Walgreen's and "get some immediately". My headaches slowed down dramatically.

About half the time I don't understand what the heck he's talking about and he just has to TELL me what to do, but for some reason - it usually helps.

But when it comes to his O2, vitamins and minerals, I LISTEN to him and so far it's helped me.

Hugs BD Kiss
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Re: the Aftermath
Reply #17 - Mar 2nd, 2010 at 1:26pm
 
Batch's research and explanation seems to support the water X 3 tip some find helpful. I think.
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Re: the Aftermath
Reply #18 - Mar 2nd, 2010 at 1:59pm
 
It is so nice of Batch to take his time researching, collecting data, and reporting this as a resource for us!
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Experience:  That most brutal of teachers.  But you learn, my God do you learn.  -C. S. Lewis
 
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Re: the Aftermath
Reply #19 - Mar 2nd, 2010 at 7:11pm
 
Just be aware, that if you take more than 600-700 mg at ONE time, you will be pissing the excess out.  Divide your calcium into 2 doses, one in the morning and one at night
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