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About time I said hello (Read 4184 times)
numbnose
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About time I said hello
Feb 27th, 2011 at 3:59pm
 
Hello and firstly thank you all for the help and support you provide.
It's about 5 years since I last lurked here and I must say the info and help is much more precise and informed.
Much appreciated.

I am a 49 year old episodic cluster sufferer since 1999.
I use o2 @15lpm and a Clustermasx.
My cycle is roughly every 20 months and has always lasted 40 days - until now.

I was very lucky to be diagnosed the day after my first attacks which I of course though was a brain tumor.
I was prescribed Migril which I used incorrectly, but successfully, as a preventative.
Second bout and I moved on to Verapamil and Zomig.
Third bout was Verapamil and Imigran 20ml nasal spary.
Number four, and finally I get perscribed o2 after year long battle. Happy days! Smiley  ... and I decided to drop the Verapamil and Imigran for the next bout. This worked great for the last two bouts and I felt so much better between hits without those meds.

Current bout started on the 3rd January and had 3-5 night-time and morning hits daily for the first 43 days.  Strange, and lucky thing was, they were all only kip 4 or 5.
All were aborted successfully using o2 in 10 minutes max .

Day 47 things changed when I started getting daytime hits as well. So now I'm at 7-10 hits a day and am into a longer bout than usual.

Day 52 and suddenly the o2 doesn't work. Following the advice found here, if I had no luck after 15 mins I would ride it out for 10 mins and then hit the o2 again. Kip level is up a bit too.

Day 54 and the o2 does not abort 60% of the attacks even after taking a break.

Now, here's the bad news, the minute I touch the o2 the KIP shoots up to 8 or more and the attack lasts an hour or more. I've read and read here over the last few months but havn't come across this reaction to o2.
Mind you, there's a lot here and I havn't read everything!!

This morning I had my 196th attack this bout.A Kip 10 which lasted 2 hours. It was immediately followed by my first ever panic attack which nearly frightened my poor mother to death!

I am knackered, pissed off and just a little bit scared!!

Simon
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« Last Edit: Feb 27th, 2011 at 4:01pm by numbnose »  
 
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Batty
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Re: About time I said hello
Reply #1 - Feb 27th, 2011 at 4:27pm
 
Hi Simon and Welcome back!

I cannot comment on your latest fight but there will be the Vets along soon!
We will try to get you sorted re being knackered (my biggest problem now too!)
and we can do something about you being pissed off and scared!
Even if its just letting you know your'e not alone with this mate!

Respect and hang in there!

Gary
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"An old Wolf may lose his teeth, but never his nature.."
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bejeeber
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Re: About time I said hello
Reply #2 - Feb 27th, 2011 at 11:11pm
 
Simon that SUCKS. Angry

So sorry to hear about how your O2 experience has changed.  Sad

Of the thousands of posts I've read here and at clusterbusters.com, I've seen a couple other people report O2 making their CH worse, so you're not completely alone there.

Many of us require a really strong blast of O2 in order to abort an attack, especially deep into an episode. I'm talking about 25 LPM minimum. Personally I have to vigorously hyperventilate O2 at 45 LPM with a retrofitted very large reservoir bag in order to abort an attack.

Some also find that chugging an energy drink at onset helps the O2 work better.

And if anyone's case ever appeared to me to be screaming out for the powerful cluster buster alternative approaches it is yours.

If you haven't looked into it yet, here are a couple links:
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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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Bob Johnson
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Re: About time I said hello
Reply #3 - Feb 28th, 2011 at 3:05pm
 
If there is any comfort in it, your experience with O2 stopping working is all too common with many/most of the meds we use. There hasn't been any research on why this occurs but the response is always the same: we screw up our persistence and start running a new set of trials with different meds until we find something (and the dose) which works.

Just reflects how little is understood about the mechanisms/processes of Cluster.
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numbnose
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Re: About time I said hello
Reply #4 - Mar 1st, 2011 at 8:53am
 
Thanks folks for your support.

I am just coming out of a 5 hour attack. My nose is now numb - another new one to me. Again, O2 just made it worse but I was woken from sleep so maybe it was too late for the o2.
I did notice that I had  a few milliseconds of relief when I cried. Try it!!
Numbnose... ye gotta laugh. Think I'll change my username Smiley

I think (hope) part of my problem was I'd got so used to relatively mild hits that I'd forgotten how severe a K10 was and was waiting too long to jump on the O2 .
It can be so confusing sometimes trying to work out whether it's just a shadow or the onset of another attack.
I am using two B10 cylinders and two mouthpieces to ensure a constant supply.

I have read all about Busting but it's not so easy in a country where we burn down headshops.

I am using plenty of Sugar Free Red Bull.
I have started Batch's Omega and D3 regime and have ordered some Melatonin and I suppose I should go to my GP and get some TREX but what about Pred or Vera? Is it pointless to start them as I am 58 days into this cycle?


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bejeeber
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Re: About time I said hello
Reply #5 - Mar 1st, 2011 at 4:10pm
 
That's such a tough call about pred and vera since you don't know if you're at the end of the cycle or not, and pred is suspected by some of us including myself of having the capability of extending an episode.

I wonder if you can order RC seeds online and possess them legally as we can here in the US? Bringing that up because they are a natural form of busting that has such mild - and so far seemingly harmless - side effects.

In my book at least they come under the category of "can't hurt to try".

Don't you just love that little surprise where after years of consistent length episodes, the beast will arbitrarily decide to just go ahead and extend his visit?  Angry That phenomenon is definitely not uncommon.  Sad Over the years I've gone from 30 day episodes to most recently 75 days.
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« Last Edit: Mar 1st, 2011 at 4:11pm by bejeeber »  

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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Glassman
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Re: About time I said hello
Reply #6 - Mar 3rd, 2011 at 9:35am
 
Hey Scone...(Numbnose, that is a good one!  Wink)
When I was using O2 during my most recent bout, I noticed if I was sound asleep it took me longer to get to the oxygen and consequently would not work and I'd be forced to run home to Mama Imitrex. 
Batch, our O2 guru, may weigh in here shortly with some insight for you.
I asked for a Pred taper from my Doc and it was a week long miracle. Meaning, they came back at the end but it was such a relief to have five days pain free.  My doc then started me on Verapamil (not the recommended course as the Verap should have been prescribed with the start of the Prednisone) and I was good after that.
I know it can be difficult but keep your hopes up and tuned into the message board.  I practically lived at the message board!
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numbnose
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Re: About time I said hello
Reply #7 - Mar 5th, 2011 at 2:37pm
 
bejeeber wrote on Mar 1st, 2011 at 4:10pm:
That's such a tough call about pred and vera since you don't know if you're at the end of the cycle or not, and pred is suspected by some of us including myself of having the capability of extending an episode.

I wonder if you can order RC seeds online and possess them legally as we can here in the US? Bringing that up because they are a natural form of busting that has such mild - and so far seemingly harmless - side effects.

In my book at least they come under the category of "can't hurt to try".

Don't you just love that little surprise where after years of consistent length episodes, the beast will arbitrarily decide to just go ahead and extend his visit?  Angry That phenomenon is definitely not uncommon.  Sad Over the years I've gone from 30 day episodes to most recently 75 days.


bejeeber, sorry about your 75 days but it does encourage me if you know what I mean.
I have decided to go for it and ordered some RC's by post. Can't establish their legal position over here but I am hoping it's the same as the UK seeing as that is the source. Guess I'll find out when the delivery guy smiles - or not!!   Undecided

Glassman wrote on Mar 3rd, 2011 at 9:35am:
Hey Scone...(Numbnose, that is a good one!  Wink)
When I was using O2 during my most recent bout, I noticed if I was sound asleep it took me longer to get to the oxygen and consequently would not work and I'd be forced to run home to Mama Imitrex. 


Hi Glassman, this brings up something I was thinking about. I have some Melatonin on the way.
If we wake after taking Melatonin won't we be further into the attack making it harder for the o2 to work?

Numbnose it is so!!   Grin

cheers guys.


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Glassman
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Re: About time I said hello
Reply #8 - Mar 5th, 2011 at 5:56pm
 
Numbnose, (do like the name change!)
That's what I kinda thought, and the Melotonin did seem to put me in such a deep sleep it took me longer to wake so I did give it up.  I was then able to wake sooner and get the O2 mojo working better for me.
But I think it's important to give it a try cuz it does work for some people.
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« Last Edit: Mar 5th, 2011 at 5:57pm by Glassman »  

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Re: About time I said hello
Reply #9 - Mar 5th, 2011 at 9:54pm
 
On the bright side Simon, besides the longer episodes, longer and longer remissions are also common as the decades with CH fling by.

No guarantee that any given individual will experience longer remissions, but they do make the longer episodes "worth it", so I hope you too are in store for some luxurious years without CH.  Smiley
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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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Batch
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Re: About time I said hello
Reply #10 - Mar 5th, 2011 at 10:30pm
 
Sorry to come so late to the party...

Oxygen therapy should work every time to abort a CH, If:

1. The flow rate is high enough...  15 liters/minute is the absolute minimum flow rate although a few CH'ers are fortunate that flow rates as low as 8 liters/minute will work for them, but then flow rates ≤15 liters/minute will have trouble aborting anything ≥ Kip-6 and will likely fail at any pain level ≥ a Kip-8. 

It takes a flow rate of 25 liters/minute to hyperventilate for reasonably short abort times and higher sustained flow rates up to 40 liters/minute will work even more effectively with the shortest abort time possible all the way up to Kip-9.

2. You start early at the first indication a CH is coming...  Most CH will jump at least one Kip-level in pain during oxygen therapy even at the higher flow rates.

3. You start asap if the CH hits while sleeping and catch it before it hits Kip-9

4. The exhaust and inhalation check valves on the non-rebreathing oxygen mask are functioning properly.  A faulty inhalation check valve at the bottom of the "T" manifold will allow exhaled breath to enter the reservoir bag...  At that point you'll have a "Re-breathing" mask and will start building unwanted CO2 in your arterial blood as you re-breathe your own CO2 with every breath.  If that happens, an abort will be nearly impossible.

5. You're not suffering from a low arterial pH that increases vasodilation, or you're not experiencing some kind of allergic reaction that's triggering increased neurogenic inflammation in and around the trigeminal nerve.   

You can measure saliva pH as an analog of arterial pH, but first you need to establish a baseline during a "normal" part of a CH cycle where oxygen therapy is working properly by taking three measurements a day and average them for a few days. 

There's no way to measure neurogenic inflammation without sophisticated neuroimaging, but the experts say it's there during a CH and it's part of the pathophysiology of this disorder.

Nearly all oxygen therapy users who use flow rates that support hyperventilation have had times when oxygen therapy even at the higher flow rates either took much longer than normal to abort a CH, or it took so long it didn't appear to be working at all.

When that happened to me, I started taking a regimen of calcium citrate tablets formulated with vitamin D3, magnesium, and zinc washed down with lemonade.  The thinking here was this regimen would act as a buffer on the stomach's gastric juices elevating them from a pH of 1.0 or 2.0 up to a pH of 3.9 and that would help elevate a low arterial pH...  I would also start on an alkaline forming diet.  See the chart at the following link for details on alkaline forming foods: 
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2 to 3 of these calcium citrate tablets with a glass of lemonade usually brought my oxygen therapy abort times back in the normal range.  Sometimes it took up to 4 of these tablets to get any reduction in abort times.

Last October I began to suspect it was the vitamin D3 that was actually helping shorten the abort times.  I was taking the above regimen and knocking down 4 CH a night in good time with oxygen therapy, so I added 10,000I.U. vitamin D3 and three of the 1000mg. Omega 3 Fish Oil softgel capsules (that works out to ~1000mg. EPA + DHA, the actual Omega 3 fatty acids). 

Omega 3 Fish Oil and vitamin D3 both have a known anti-inflammatory property and there's a list longer than your arm of ailments caused by a vitamin D3 deficiency.  BTW most of us have a vitamin D3 deficiency unless we're roofers, produce pickers, or stay outdoors in direct sunlight a lot without sun block.  See attached pdf file.  It's an article on Vitamin D Deficiency: More on diagnosis and management.  The second page talks about normal and therapeutic vitamin D3 dosage.

The first night on this new regimen I only had two CH.  I was pain free the second night and have been pain free ever since.

We have several others who have tried the Omega 3 Fish Oil and Vitamin D3 regimen and most are reporting positive results.

Getting back to the oxygen flow rate...  and why higher oxygen flow rates work much more effectively and with very short abort times.

There are two parts to successful oxygen therapy.  Hyperoxia - Increasing the blood hemoglobin's oxygen saturation above normal to 100% and hypocapnea - reducing blood CO2 levels below normal through hyperventilation. 

Hyperventilation casts off CO2 from the lungs faster that the body generates it through normal metabolism.  If you're able to hyperventilate long enough and maintain this level of lung ventilation, you'll push your system into respiratory alkalosis. 

You'll know when you reach this state when you start feeling the symptoms of paresthesia - a slight tingling or prickling of the fingertips, lips, or back of the neck.  You may also experience a slight dizziness.

These are good symptoms and the best indication you'll get the fastest abort possible while breathing 100% oxygen as respiratory alkalosis and hyperoxia stimulate the vasoconstriction needed to generate the abort much faster than just hyperoxia.

With that in mind, you have two options if you're stuck with a regulator that tops out at a flow rate of 15 liters/minute... Modify your breathing procedure and technique or get a bigger reservoir bag for your Clustermasx™ like a 40 gallon trash bag or a 55 gal drum liner.

I was working on a new oxygen therapy procedure before my CH went into remission.  The purpose of this new procedure was to help folks like you who were stuck with an oxygen regulator that could only deliver a flow rate of 15 liters/minute. 

The basic procedure involves hyperventilating on room air for two to three breaths while the reservoir bag fills, then inhale a lung full of 100% oxygen, then keep repeating the basic procedure until the abort. 

There's no real time limit on breathing 100% oxygen at sea level pressures.  I've been on 7 hour flights flying Navy fighters breathing 100% oxygen the entire time with no ill effects and I've over 3000 flight hours flying jet fighters and all of it was spent breathing 100% oxygen.  We would need to breathe 100% oxygen for 10 to 12 hours without a break breathing normal air before starting to feel the symptoms of pulmonary oxygen toxicity.

I found this procedure produced a faster abort than just breathing 100% oxygen at 15 liters/minute and it was almost as fast as breathing 100% oxygen at 25 liters/minute.

The breathing technique is important and it requires breathing at forced vital capacity tidal volumes while standing to give the diaphragm a full range of motion.  To do this I exhale forcibly and rapidly with mouth open and jaw dropped like saying the word "Haw" and when it feels like my lungs are empty, I do an abdominal crunch like doing sit-ups and hold the squeeze until I hear a wheezing sound for two to three seconds then inhale rapidly and fully then repeat the entire procedure two or three times while waiting for the 3-liter reservoir bag to fill so I can inhale a lung full of 100% oxygen.  Forced vital capacity exhalation will squeeze our another half to full liter of breath and this end tidal flow is highest in CO2 content.

If I do this breathing technique correctly, I can feel the symptoms of paresthesia by the third exhaled breath of room air. 

Practice it now while you're PF so you'll know what the symptoms of paresthesia feel like when you try the procedure during an actual CH.

Making a super large reservoir bag out of a 40 gal trash bag or 55 gal drum liner is easy.  Fold the open end of the trash bag over at least an inch a couple times and seal with Duck Tape for an air tight seal.  Cut a half inch corner off the opposite end of the bag and stretch it over the 22mm fitting at the bottom of the Clustermasx™ or O2PTIMASK™ "T" manifold then seal with electrician's tape for an air tight seal.

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Put a small plastic bag over the top of the "T" manifold and wrap a rubber band around it to form an air tight seal then turn on your regulator to fill the trash bag with oxygen.  When the bag in nearly full turn off the oxygen and your kit will now be ready for use.

I used this method while on travel one time after getting to my hotel room where the cylinder of oxygen I'd ordered was waiting only to discover I'd pulled the oxygen user's ultimate dumb s#!t and left my regulator at home.  I got the bell hop to get me a large clean trash bag and some electrician's tape.  I tied the open end of the bag around the fill fitting and taped the "T" manifold to the other end, then cracked the valve open slightly to fill the bag...  Joyce shook her head and laughed...  but it worked great!

Hope this helps,

Take care,

V/R, Batch
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« Last Edit: Mar 7th, 2011 at 3:33am by Batch »  
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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
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numbnose
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Re: About time I said hello
Reply #11 - Mar 30th, 2011 at 1:31pm
 
5 days PF now so I'm thinking this bout is over. 80 days exactly.
Typical beast, my last attack was the day my O2ptimasks arrived(thanks guys!!!  Wink ).
Next day Melatonin and RC Seeds. Havn't had to use any of them. Roll Eyes

The o2 started to work again after 8 days albeit having to hit it twice,with a 10min gap.
Then slowly became normal aborts in 10-15 mins.
Never got to give the D3 and Omega a proper go as starting them coincided with the O2 not working
so in the panic I stopped taking them! It looks really promising though and I'll be there next time, if not before.

Went out today without O2 for the first time. It was so good just to look around without all the
background noise of the beast.

Thank you all -and I mean ALL- for your help and support.
Reading everyone's experiences, however rough, and learning from them, made it easier to cope.
Amazing how the sharing empowers like that.
The battle is to stop the beast defining us inasmuch as we can.
Thanks Batch for keeping us all moving, Lance for his way with words, and Potter the Guinness Lover 
for making me laugh when I most needed to Smiley





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Re: About time I said hello
Reply #12 - Mar 31st, 2011 at 7:26am
 
Smiley
This is why we're here. Great news and please do stick around to help others, and share with all of us your experience.  One word of caution: you will get "used" to faster abort times, and pf days...don't let down your guard. The Beast is a tricksie thing it is. But you're stronger now and better prepared. Blessings. lance
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Re: About time I said hello
Reply #13 - Apr 1st, 2011 at 12:11am
 
Great news, Numbnose! I hope you have a permanent remission. If not, then at least you're armed for the next round.
-Gary
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Maine Coon Cat Crazy
 
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