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Starting to run out of options... (Read 2639 times)

wicket

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Starting to run out of options...
Oct 27^th, 2012 at 1:24pm

Hi folks, so just a little background on my CH's so you might have some sort of idea's that I may not have explored...

Cluster headaches started at age 19 or so. Began as episodic, was able to predict my cycle to a tee up til last winter. Had a nasty cycle that was almost triple the length of my original cycles and have been chronic ever since.

Mine usually start with some throbbing in the temples, followed by itchy/burning needle-poke sensations in one eye. (Usually the left, but they sometimes switch) After 10-45 minutes I'm usually experiencing "lightning strikes" or "electrical" shooting pains that burn down the centerline of my skull, then radiate to one side (again, usually the left.) I sometimes feel them in my teeth, jaw muscles, inside my ear, around my temporal lobe, along one side of my nose and my occipital orbit, in my cheek and one temple.

I've been put on various medications. I have O2 that flows up to 8 liters per minute, but I'm currently out because of economic hardship.

Below is a list of stuff I've been put on that had mixed or no effects;
Depakote, lithium, lamictal, verapamil, vitamin D3 regimen, melatonin in various preparations, intranasal capsaicin.

Now here's the list of stuff that works;
Klonopin, migranal, oxygen, triptans

Unfortunately, klonopin and other benzos take up to 30 minutes even if administered sublingually to work. I think it may be psychological as well (I'm probably too messed up to care if it hurts.) Migranal is 200 dollars under my insurance (and I have damn good Blue Cross Blue Shield insurance here in Texas.) so I can't afford it. I can't afford oxygen either right now. And I'm allergic to sulfa. I've taken various triptans once or twice each with BAD neurological results.

I've used alternative methods to treating my headaches using various triptamines such as psilocybin, LSD, LSA, as well as smoking marijuana and hash. Use to work very well (all of the above) and in the last couple months it seems they have lost their effectiveness.

I'm kind of at a dead end here. Anyone have ANY sort of suggestions? I'm currently trying the water treatment with multivitamins to see where it goes. Only the first day so time will have to tell.

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Batch

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Re: Starting to run out of options...
Reply #1 - Oct 27^th, 2012 at 8:06pm

Wicket,

Sounds like you're in a bit of a pickle...

For starters... an oxygen flow rate of 8 liters/minute is too low. You can work with a flow rate of 15 liters/minute, but the minimum flow rate that supports hyperventilation is 25 liters/minute...

40 liters/minute would work even faster to abort your CH. That way you would at least have an effective acute treatment... You can pick up a good welder's O2 regulator for $35 at Harbor Freight Tools that's capable of delivering oxygen flow rates high enough to blow out your shirt tail.

You also get a better bang for the buck (lower cost per abort), by ordering oxygen in the larger M-size oxygen cylinders... They hold 3995 liters when fully charged and should be good for 25-30 aborts with the right breathing techniques...

The welder's O2 regulator fits the Medical M-size and welder's M-size oxygen cylinders just fine... They both have CGA-540 fittings.

Did you see your doctor for a lab test for 25(OH)D before you started the anti-inflammatory regimen? If so, what was your serum 25(OH)D concentration?

Are you still on this regimen? If so, how long have you been on it, or how long did you stay on it before you stopped it? Some CH'ers have taken up to a month for a favorable response.

Given the other standards of care prescription medications and alternative methods of intervention have not provided any relief, it's possible you may have one or more comorbid conditions... any of which can have the above effects making you essentially refractive to all forms of CH intervention.

As long as you have BCBS... it might be prudent to see your PCP for a complete workup with all the labs.

Take care and please keep us posted.

V/R, Batch

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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wicket

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Re: Starting to run out of options...
Reply #2 - Oct 28^th, 2012 at 2:32am

I have tried to get my neuro to prescribe a higher flow rate but he insists that anything above 10 liters per minute will collapse my ventricles. I'd considered welding oxygen but wasn't sure where to start looking. Thanks for the pointers!

I was never on an anti-inflammatory regimen of any kind for my cluster headaches. I don't handle prednisone or other anti-inflammatory steroids very well as it makes me manic and I become suicidal and/or homicidal. Last time I was put on prednisone... 2 people had to wrestle an assault rifle from me... Thank the Lord no one was hurt!

I recently had blood drawn to check the levels of lamictal in my system (I take it for myoclonic and tonic-clonic seizures) and had a full checkup done to report back to my neuro. Nothing out of the ordinary.

I took a pretty hefty dose of LSA about 3 hours ago and have found some relief for probably the next few days.

« Last Edit: Oct 28^th, 2012 at 2:56am by wicket »

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shooky

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Re: Starting to run out of options...
Reply #3 - Oct 28^th, 2012 at 6:07am

wicket - when some of your meds don't work anymore, this might mean you developed tolerance, or having rebound headaches, or that there is a new trigger affecting your HAs. This can also explain the change in the course of your CH. So, I guess using less medication and looking for possible triggers, might be a wise strategy.

You didn't mention being treated with corticsteroids (such as Prednisone), which can sometimes break a cycle and would probably give you at least 10-15 PF days (which could be a good time to clean your system from the rest of the stuff you've been taking). It's not an ideal medicine, but a taper of 10-14 days is usually harmless.

Meanwhile, you can try Kudzu which is a big help for many. A water treatment is worth a try, and you should definitely add energy drinks to your abortives list. Note that using hot/cold pads is highly effective for some people.

In my experience (others may have experienced different things), successful abortion of attacks tends to shorten cycles (probably because it lessens the damage to blood vessels), while preventive medication tends to make them longer (although usually much less painful). On the other hand, a chemical abortive (say, triptans) used too often, tends to give you rebound HAs.

Marijuana is only working if you use the right kind. Some varieties work more as a trigger than as an abortive, and you should never use the leafs - only the parts of the plant that has high concentration of cannabinoids. Using Hash is NOT advised since it usually contain more materials from the leafs and branches which could actually trigger attacks - this may as well be the new trigger you are looking for.

Some people say an oily tincture of THC is working for them. I would stay away from alcohol tinctures (naturally) but also glycerin tinctures, because glycerin itself is a potential trigger.

Good luck!

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Kevin_M

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Re: Starting to run out of options...
Reply #4 - Oct 28^th, 2012 at 6:42am

shooky wrote on Oct 28^th, 2012 at 6:07am:

You didn't mention being treated with corticsteroids (such as Prednisone), which can sometimes break a cycle and would probably give you at least 10-15 PF days (which could be a good time to clean your system from the rest of the stuff you've been taking). It's not an ideal medicine, but a taper of 10-14 days is usually harmless.

There was a mention in his last post.

Quote:

I don't handle prednisone or other anti-inflammatory steroids very well ...

Buying time with pred can be a good idea, but reread some detail from above.

« Last Edit: Oct 28^th, 2012 at 6:44am by Kevin_M »

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wicket

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Re: Starting to run out of options...
Reply #5 - Oct 28^th, 2012 at 12:24pm

I'd already came to the conclusion that I was building a tolerance to a lot of stuff, and I'd already began a detox about 6 days ago. I've tapered off the lamictal for about 2 weeks until I stopped taking it these last 6 days. It's the only med I've been on for about 3 months or so now.

I use to use Monster Java as an abortive but have found the massive amounts of caffeine in energy drinks have become a nasty trigger. I can't even enjoy my beloved Red Bull anymore, nor my morning coffee and biscotti Sad

Well at least I can eat the biscotti. Haha.

I'll be sure to do a little research on Kudzu. I've heard about it recently on a number of occasions but have been meaning to gather some intel on it!

Yeah a lot of that sounds pretty much right. I was completely pain free last night and through the morning, but I woke up and here I am back at square one. I'll just continue the detox. Seems like the only logical thing to do.

I was a medical grower for some years (I even still have my hydroponic equipment) and I'm quite familiar with this awesome plants uses.

But you're right, some strains (especially indica strains) are triggers or just make existing headaches worse. Sativa is the way to go. BUT I have a kid on the way and decided to quit smoking about a month ago.

I'm pretty sure my line of work (mechanic) isn't exactly the best thing for my headaches too. I'm around all kinds of carcinogenic and noxious chemicals all day. Break cleaner, dynaclean, gas, etc etc.

Speaking of which, I have to get to the shop and make that money. I'll be back later people! Thanks for the help

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Batch

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Re: Starting to run out of options...
Reply #6 - Oct 28^th, 2012 at 5:14pm

wicket wrote on Oct 28^th, 2012 at 2:32am:

I have tried to get my neuro to prescribe a higher flow rate but he insists that anything above 10 liters per minute will collapse my ventricles.

Well bless my long grey whiskers, but YGBSM!!!! This neurologist is either thinking pure thoughts or he's suffering from a severe case of cerebral flatulence...

I've heard a lot of lame-ass excuses from neurologists who didn't want to prescribe oxygen therapy to patients suffering from CH, but not prescribing an oxygen flow rate above 10 liters/minute because it would collapse the heart's left and right ventricles takes the cake Smiley

...

If you quoted his exact words and he made this statement with a straight face and there was no apparent lengthening of his nose as he made it... I would strongly consider looking for another neurologist...

Either that or throw the BS flag and ask for the medical evidence that oxygen therapy at flow rates greater than 10 liters/minute can cause the heart's ventricles to collapse...

I'm very confident that if such medical evidence exists... oxygen regulators capable of delivering flow rates greater than 10 liters/minute would be banned worldwide.

Good people of Clusterville... using oxygen therapy at 12 to 15 liters/minute is the safest, most effective and least expensive method of aborting a cluster headache... It works even more effectively at flow rates between 25 and 40 liters/minute with much shorter abort times.

Navy and Marine Corps pilots flying tactical fighter and attack aircraft have been breathing 100% oxygen from takeoff to landing on missions lasting 2 hours or more since 1943... That was shortly after US engineers cockaroached the oxygen regulator design from a Bf-109 that landed by mistake in the UK.

I can also assure you after over 3000 hours as a pilot of Navy jet fighter aircraft, breathing 100% oxygen from take of to landing on every flight, that I routinely sucked down that oxygen at flow rates well in excess of 40 liters/minute during air combat maneuvering... or whenever things got hairy-scary... my heart never collapsed... and I'm still here more than 30 years later...

Moreover, OPNAV 3710.7U, the Naval Aviator's bible of General Flight and Operating Instructions, signed by the Chief of Naval Operations, states:

"8.2.4.3 Tactical Jet and Tactical Jet Training Aircraft

Oxygen shall be used by all occupants from takeoff to landing. Emergency bailout bottles, when provided, shall be connected prior to takeoff."

You've got to ask yourself... Why would a 4-Star Admiral mandate pilots and NFOs flying a National Treasure worth of jet aircraft, breathe oxygen from takeoff to landing on all flights... day and night, on and off aircraft carriers... if it could cause hearts to collapse?.

The good Dr. Peter Goadsby, MD, completed a Level A RCT on oxygen therapy a few years back... The conclusion clearly calls for the acute treatment for cluster headache to start with oxygen therapy at flow rates up to 12 liters/minute.

Even Wikipedia has a section on the use of oxygen therapy as an acute treatment for cluster headache... "During the onset of a cluster headache, many people respond to inhalation of 100% oxygen (12-15 liters per minute in a non-re-breathing mask). Some people have found better results with 25 liters per minute. There is also a study (commenced 2011) using an "on-demand" valve that can deliver up to 160 liters per minute. When oxygen is used at the onset this can abort the attack in as little as 1 minute or as long as 10 minutes. Once an attack is at its peak, oxygen therapy appears to have little effect so many people keep an oxygen tank close at hand to use at the very first sign of an attack."

Many of us have said the following in the past and it still holds true today... Cluster headache sufferers need to be their own best advocate when it comes to methods of cluster headache intervention that work effectively...

Take care,

V/R, Batch

« Last Edit: Oct 28^th, 2012 at 11:33pm by Batch »

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shooky

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Re: Starting to run out of options...
Reply #7 - Oct 28^th, 2012 at 8:09pm

In the past, I used to use O2 starting at 6 LPM and go gradually up to 10, 12 and 15.

Only after reading what folks here had to say, earlier this year, I changed to the method completely. 15 LPM, after 1-2 glasses of water and sometimes an energy drink, aborted most of my attacks in 3-5 minutes. Had to use triptans only once in 4-5 attacks.

As for the Pred and other steroids, wicket - they can also be administered strait to the vain, which saves some of the side effects. For some people this is very effective.

On the other hand - detoxing does sound like a good idea. It'll probably also make it easier for you to recognize which materials to which you are exposed at work are triggers. And if you can't avoid them completely than you should probably be able to get exposed just a little less by, say, using a mask on specific tasks.

« Last Edit: Oct 28^th, 2012 at 8:13pm by shooky »

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wicket

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Re: Starting to run out of options...
Reply #8 - Oct 28^th, 2012 at 11:42pm

Yeah I know, I asked my mother (who has been an RN for like 30 years and my sister who is an advanced EMT) about the ventricle collapse thing. They even said it was bullshit. As much as I like my neuro I've begun to doubt him and you basically just handed me a smoking 12 gauge. LOL

As for triggers at work, any and every chemical I'm around in that garage is an irritation. However we DO have good venting both in the roof and in the floors and I DO have access to a respirator. The only time I can't use the mask is when I have a running vehicle on a lift for obvious reasons. I'd hate to have my head sucked into the flywheel of a car like my hand did a couple weeks ago. Grace of God, my damn hand is intact. Shocked

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wicket

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Re: Starting to run out of options...
Reply #9 - Oct 29^th, 2012 at 12:32am

SIDE NOTE: The LSA worked for now. Despite the lack of sleep last night (for obvious reasons) I went through today at no more than a KIP 2 whereas I generally hit a minimum KIP 6 on a good day. I kept my headache log, as well as lists of what I'd eaten or drank or took in (such as vitamins or aspirin) throughout the day. In time, lets hope I narrow down the bigger triggers! I remain optimistic.

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