The following is a letter I sent to my caseworker regarding my appt with PCP and his reaction to taking vitamin supplements and other alternative therapies for the cluster headaches.  She was also very discouraging about that and both of them implied it was dangerous to use alternative therapy.  Pissed me off royally.  I apologize in advance for the length.  I kinda got on my soap box in part because I'm still up from the last headache which is finally reached a dull roar behind my right eye.  Sometimes the pen is mighter than the pacing. If you can sit still anyway and tonight I could sit still.  Most of the time the supplements are minimizing the headaches even if they aren't gone yet.

Dear Ms. Blah Blah (editing out her name)

I researched some information about the possibility of over doing vitamin supplements because you and doctor M----- seemed to me to be overly concerned with that.  Here's what I found out:

Copy/pasted from Wiki:

In 2008 testimony before a Senate subcommittee, Medical Epidemiologist Dr. Leonard J. Paulozzi[11] of the Centers for Disease Control and Prevention stated that in 2005 (the most recent year for which data was available) more than 22,000 American lives were lost due to overdoses, and the number is growing rapidly. Dr. Paulozzi also testified that all available evidence suggests that unintentional overdose deaths are related to the increasing use of prescription drugs, especially opioid painkillers.[12]

Ironically, the some of the major reasons I started using alternatives to pain medication are my substance abuse history, both unintentional and intention prescription drug overdose history, and an attempt to combat a rather nasty morphine habit which I acquired after I stopped using drugs illegally when the VA felt it wise to prescribe me opiates for an extended period of time instead of giving me the hysterectomy recommended by the professional consultant they hired.

More from Wiki:

Comparative safety statistics
Death by vitamin poisoning appears to be quite uncommon in the US, typically none in a given year.[2] For example, in the United States, overdose exposure to all formulations of "vitamins" was reported by 62,562 individuals in 2004 (nearly 80%(~78%, n=48,989) of these exposures were in children under the age of 6), leading to 53 "major" life-threatening outcomes and 3 deaths(2 from Vitamins - D and E; 1 from polyvitaminic type formula, with iron and no fluoride).[3] This may be compared to the 19,250 people who died of unintentional poisoning of all kinds in the U.S. in the same year (2004)

If 80% of all cases reported were in children under the age of 6 and only 3 people died, statistically at least 2 of them were children under the age of 6. I guess people with little bitty body masses are more likely to get an overdose of anything and people are more likely to administer vitamins to their kids than prescriptions.  Maybe if doctors encouraged people to take alternatives to prescriptions we could get that number of accidental overdoses down to what like 10 a year from 20000+?

One last note from wiki (just because I am a smart ass):

Water intoxication, also known as hyper-hydration, water poisoning, oroverhydration, is a potentially fatal disturbance in brain functions that results when the normal balance of electrolytes in the body is pushed outside of safe limits by over-consumption of water.

It is this increase in pressure which leads to the first observable symptoms of water intoxication: headache, personality changes, changes in behavior, confusion, irritability, and drowsiness. These are sometimes followed by difficulty breathing during exertion, muscle weakness, twitching, or cramping, nausea, vomiting, thirst, and a dulled ability to perceive and interpret sensory information. As the condition persists papillary and vital signs may result including bradycardia and widened[4] pulse pressure. The cells in the brain may swell to the point where blood flow is interrupted resulting in cerebral edema. Swollen brain cells may also applypressure to the brain stem causing central nervous system dysfunction. Both cerebral edema and interference with the central nervous system are dangerous and could result in seizures, brain damage, coma or death.[5]

However, I've never heard one medical professional suggest that drinking water might be a bad idea.  That's because it almost always is a good idea.  Unless you're Andy Worhol... of course he didn't actually drink the water that killed him... most people think he died of complications from being shot that time, but actually it has been argued that he had too many IV fluids while unconscious during complications from getting shot that time.  All things considered if it is your time to go, even water can be a bad idea.  However, it is not my time to go... and vitamins have improved my life dramatically.  If you don't see it, that's because you didn't see me when I still popped the 20 pills a day that the federal govt doled out back then.  Everyone in america is 7333.33 times more likely to die from an accidental prescription overdose than from any kind of vitamin overdose including the 6 year olds.  But someone like me who has a history with them, well, they don't have statistics on that but my guess is its a lot higher.  In fact, dying from drinking too much water is more likely than dying from vitamin toxicity.  And that almost never happens either but it is still more likely to happen.  People are not getting toxic all over america from taking too many vitamins.  It can happen, but its rare.  It's certainly more rare than only the deaths resulting from accidents with prescriptions which doesn't count suicide attempts, pharmacy mix ups, allergic reactions.  All of those happen even more frequently than accidental overdoses.  That's a lot of people dying because they took pills. 

Discouraging people from choosing supplements over prescriptions with incorrect and prejudicial misinformation just feeds pharmacy companies and ultimately that national deficit people sometimes get concerned about.  Particularly when dealing with something like the cluster headaches which do not respond to traditional medicines.  People get more relief with Redbull than they do with hydrocodone.  You know the prescription he wrote me isn't even for cluster headaches its for paroxysmal hemicranial headaches which is a totally different kind of headache. I'm not suggesting that you guys up at the VA are in a position to encourage people to take supplements and totally give up on prescriptions like I have tried to do.  All I'm suggesting is that everything you hear about supplements is not true and everything you hear about modern medicine is not necessarily true either.  Just thought you might like to know that any information you've heard counter-indicating supplements is at the very least hype and possibly outright propaganda.  GG

I LOVE it! ;D

Joe

Good approach to writing it down.

I would suggest that you never send anything like this as soon as you've written it, wait a day, re-read it and send the edited contents. From experience, this gets better results.

I'd also disagree with the description of alternative therapies.

One example, using energy drinks. These contain a combination of taurine and caffeine. The taurine is a calcium channel antagonist, just like verapamil is, which is the leading preventive for CH, so that part is hardly alternative. Equally the caffeine is a vaso-constrictor, just like oxygen which is the leading abortive for CH.

I'd like to see a doctor argue why an energy drink, subject to sensible limits on consumption, can not be a valuable additional CH treatment.

Similarly for the clusterbuster approach, there is documented scientific evidence about this working (not sure of the exact detail - others will post it).

For where the doctor is saying something is dangerous, could they provide evidence based data to back up their reactions?

Very good written approach like Mike said. And like he said,and you even said yourself you were heated by the beast at the time, correct, so wait a day or so, proofread,edit and then send it out. But, kudos for what you've got on the table so far. It's awesome.

Pfunk 8-)

Yeah, writing it can be therapeutic but if you do send it, I surely hope you don't need those guys. blessings. lance