Is there Anything else out their to stop This!!!!!

[jchange79]

I,ve been taking Verapamil for about two to three years now as a preventive and obviously it is not working or I am taking the wrong dosage (200MG) each morning. I've always had CH but for some reason this season is the worst I'd ever had ,I have oxygen (6 liters) , 100 mg Imitrex (pill form). I am very desperate right now to stop this!! My doctor is booking appointment a month ahead and I am almost at the point of no return...I know Imitrex should not be taken everyday , but I have no other choice I take about two a day and my Insurance doesn't cover some because of monthly expense or something like that.( only five per script. My Family does nopt understand what I go through and sometimes I ask myself WHY ME??? Please all suggestions are welcome I cant take this anymore I want a normal life!! :'( :-/ :-/[ :'(

[Bejeeber]

Is there Anything else out their to stop This!!!!!

Oh man is there ever - big time! 

Your Verapamil dosage sounds low, and your pill form of the imitrex is an ineffective form (for most of us). Imitrex injections in 1/2 or 1/3 doses are much faster and more effective, but still stoopidly expensive.

6 LPM for O2 is just wayyyy to low of a flow rate, really you pretty much gotta start with a minimum of 15 LPM, and may need to go to 25 LPM or higher with a non rebreather mask.

Your experience with your very uninformed sounding doctor certainly is typical, unfortunately.

I think a good plan for you would be to bump that O2 flow rate up ASAP, using these guidelines: http://www.clusterheadaches.com/O2/index.html

Then you really may want to consider "busting" with intent to get away from the toxic drugs entirely (as many here have successfully done).

Here are some links to help bring you up to speed on busting ASAP (not mentioned in the first 2 links though, are "RC" seeds, which are legal to order and possess in the US, and easy to prepare and take).

A Newsweek article on Clusterbusters:

http://www.newsweek.com/2009/10/14/the-psychedelic-solution.html

A good video talk by Bob:

ttp://vimeo.com/10918637

Busting info and instructions:

http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298051886

The replies here may be a little thin at first on this major US Independence Day holiday, but hang in there, and HANG OUT HERE.    So glad you found us - you will do a LOT better now that you'll become aware of much more effective treatments/dosages.

[jchange79]

This may be a stupid question but what exactly is"Busting"??

[Brew]

This may be a stupid question but what exactly is"Busting"??

http://clusterbusters.com/aboutcb.htm

[CHfather]

jc, i'm confused.  did you read the posts in response to your first posting (6/27)?  have you tried the D3?

[ThatHurtsMyHead]

Jeebs is right on the money. 

1)  O2 is way too low.  You have to be able to 'huff' 100% O2 for it to be effective  (15lpm and up)

2)  Verap worked for me one year, but wouldn't work the next.  You either need more or you need to detox from it before busting.

3)  Pill form Imitrex is worthless.  you need the injectors (or again to detox before busting).

My cycle last year completely terminated with 2 HBWR doses.  The cycle I'm in this year is a little tougher but am getting 4 days completely painfree between dosings.

Good luck, and fire your doctor!  Sounds like he knows as much about Cluster's as someone that would prescribe hemorrhoid medicine for a nose bleed....  ha...

Keep us posted,

Jeff

[Bejeeber]

That's a valuable reminder CHfather chimed in with here, JC, it'll definitely be worth going back and reading replies to your original post and about D3.

If you missed it to due to CH 'brain burn' (my term), well rest assured I know the feeling! 

[Brew]

Verap worked for me one year, but wouldn't work the next.  You either need more or you need to detox from it before busting.

Many people report successfully busting while still taking verapamil. I don't believe it's one of those you need to detox from before busting. No personal experience here, however.

[les genser]

I have been repeatedly flattened by phrases such as "I have been taking verapamil as a preventative for three years" followed immediately by undeniable evidence that said drug prevents nothing. The operative question then becomes the obvious why take it? Humans are funny.

Verapamil works by artificially aging your circulatory system to the tone of an eighty year old (which is probably insulting to lots of eighty year old people). The list of deleterious side effects is lengthy, which annoys me, but what really frosts my wienie is that it DOES NOTHING for cluster headache except exacerbate rebound. If you are one of those who believe it helped you, bless you, but you are wrong right along with the medical geniuses who prescribe this crap because it is accepted protocol (as established by the indentured temple prostitutes of big Pharm)and for no other reason.

After all, why not trust the medical industry?  Now that their multi-billion a year depression meds have been shown to be ineffective, their latest ploy is to INVENT "treatment resistant depression" and NEW ineffective drugs to take with the crap that already doesn't work for a condition that is COMPLETELY FICTIONAL.

People here already know that detoxing from meds is necessary, and we have discussed how they change the quality and character of receptors in the brain. What is not commonly realized, however, is that by their own admission, brain researchers are basically the high tech version of kids poking a critter with a stick to see what it does. This is not a criticism; there is lots of exciting and excellent work happening. The drug pushers, however, in their sociopathic greed mode, don't care about facts, and knowledge or the lack of it when money is on the table.

Given the recent mainstream interest in entheogenic drugs, I am horrified at the prospect of the pharmaceutical industry engineering the decriminalization and subsequent regulation of hallucinogens for their own benefit. God knows they own enough congressmen to do it.  We will not get effective treatments for cluster, ptsd, depression, cancer palliatives, etc. ..... we will get Soma.

NOTE: This righteously indignant rant dedicated to Bejeeber and CH Father who seem bored. Apologies to the shade of Aldous Huxley.

[CHfather]

I wouldn't describe myself as bored, Les, more just concerned (where's Mystina, too?), but I appreciate the thought and the stimulation.  I'd only add that there's another reason, in my opinion, why the medical complex thinks that verapamil and other drugs are effective CH treatments, which is that they prescribe them and then people don't come back.  So, must be working, right?  I remember once reading some study saying that doctors believe they are treating CH effectively, and I figured that must be the only reason why.  How many people have gone on to busting or licorice root or D3 or kudzu or melatonin or whatever and found that it's better relief than what the doctor gives them, or have chosen only to rely on O2 and energy drinks . . .  or, tragically, have given up altogether?  I'm pretty sure most don't then spend the money to "educate" their doctors about the failures of conventional treatments and the superiority of whatever alternative they have found, or if they've essentially given up, don't choose to get back on the drug roller-coaster.

I tell every medical professional I meet (way too many!) two things: (1) about CH symptoms (so they're less likely to misdiagnose) and about O2; and (2) that I once had terrible bouts of "idiopathic" pancreatitis -- boy, that hurts, though not like CH of course -- that I finally, after five years, figured on my own out were caused by MSG.  In both cases, the usual doctor's response is a kind of bored, let's-get-back-to-the-subject tolerance of my rants, but at least they've heard me and, who knows, it might help somebody some day.

[les genser]

Yes, I too am completely familiar with the bored tolerance that comes from speaking to doctors; they adopt an attitude of 'tolerate-the-village-idiot' that is insufferable.

I'm not a medical Luddite; I have and will continue to seek professional help when necessary (and/or unavoidable; our brand new medical center here is rapidly developing the reputation as the best place to pick up a really nasty mersa infection). I come from a family with a long history of producing and then deifying doctors; my oldest child is a third year med student.

What I object to is what I think of as the arrogance of ignorance. Their adherence to 'canon' makes Jesuits look like Yippies, and canon in this case is whatever bullshit encyclical the pharmaceutical companies are pushing this week. Doctors regard saying "I don't know" with the equivalent horror and distaste of a Jeopardy contestant. They affect a 'scientific' attitude without the accompanying required questioning of everything, including themselves.

I almost wouldn't mind so much if treatments such as verapamil were merely ineffective. Putting anything in the body is never simple; there are ripples of effect everywhere, and if I know that and consider it constantly, why don't they?

You are a much nicer person than I am in giving them the benefit of the doubt.

[Brew]

The list of deleterious side effects is lengthy, which annoys me, but what really frosts my wienie is that it DOES NOTHING for cluster headache except exacerbate rebound. If you are one of those who believe it helped you, bless you, but you are wrong right along with the medical geniuses who prescribe this crap because it is accepted protocol (as established by the indentured temple prostitutes of big Pharm)and for no other reason.

I'm not a doctor, and I don't play one on TV. I didn't even stay at a Holiday Inn Express last night. But I do know that verapamil DID reduce the frequency and severity of my CH attacks for a number of years. Did so even more effectively when combined with lithium.

How does that make me wrong? What is it about your statement that I'm not understanding?

I can't make any statement about how it has worked for other people, only how it worked for me. And it worked - not anywhere near as well or for near as long as busting - but it worked.

What am I missing?

[Bejeeber]

What I object to is what I think of as the arrogance of ignorance. Their adherence to 'canon' makes Jesuits look like Yippies, and canon in this case is whatever bullshit encyclical the pharmaceutical companies are pushing this week. Doctors regard saying "I don't know" with the equivalent horror and distaste of a Jeopardy contestant. They affect a 'scientific' attitude without the accompanying required questioning of everything, including themselves.

Ha, enjoyed that bit - classic stuff there Les. 

Although I hope to personally never touch Verapamil with a ten foot pole again, and am convinced the natural alternatives can be far superior, I am more on Brew's wavelength regarding it, as I've seen many a CH'er report that especially in higher doses it can be an effective preventative for awhile. And certainly the "chronic cocktail" of Verap and Lithium has shut down the attacks for some.

For awhile.

Then lets hope those CH'ers make their way over here!

[Hey the spell checker didn't recognize your 'yippies' I quoted as being a word that exists, Les. Well I suppose yippies ceased to exist (1971?) 40 years or so ago, well before the average nerd spell checking programmer was born  ]

[les genser]

I apologize for the delay in reply; band practice.

Brew, I am not a doctor either in the respect that I completely accept and honor your experience with verapamil. And I also know that B. is correct; some people get good results, sadly but frequently not lasting. You are obviously not wrong in this, and perhaps that was an unfortunate choice of word.

I cannot help but notice, however, that all of your references to verapamil are in the past tense.

As someone trained to see physiologic systems in an integrated way, I do believe it is a mistake to prescribe Verapamil for cluster. It achieves its effects in a kind of roundabout way which usually requires fairly large doses, its effects are globally systemic in that it acts everywhere, in places where you really don't want or need sluggish vessels, causing many 'side effects'. Side effects is a misnomer; this is what this drug does. Any drug that the body develops tolerance for should be looked at very carefully. Tolerance, in one sentence, results from the organism attempting to overcome and compensate for the action of the drug, requiring more of the drug to achieve the same effect. I believe the body's wisdom in this should not be ignored.

Rebound is another concern. It is a cousin of tolerance in that the body in compensating for the drug, swings the pendulum too hard as drug levels drop, and since the verapamil does not affect in any way CH associated neuralgias (trigger loops such as trigeminal, or shadow areas, etc) they are still there and can be vicious and lasting.

I believe the symptoms that verapamil effects have much better and less harmful alternatives available, even in the official pharmacoepia. Remember, verapamil is a blood pressure medication, originally intended for persons with hypertension, to normalize their pressure. What happens when it is given to someone with normal pressure?

It can make abortives far less effective.

Anyway, its just my opinion; just throwing it out there, like seeds.

I do believe this, though, for what its worth: No drug or medicinal substance that does not directly restore balance in the hypothalamus and HPA axis is going to cure or remit cluster headache.

[Brew]

I cannot help but notice, however, that all of your references to verapamil are in the past tense.

You are absolutely correct. I hope never to have to take it again.

The larger point I want to get across is that someone making the transition from mainstream pharmacological treatment to entheogenic treatment need not be overly concerned with verapamil blocking the therapeutic effects of busting.

[ThatHurtsMyHead]

I third the, "hope never to take Verapamil again"...  The first year it worked, the second year it didn't work and instead triggered heart palipitations which I still get from time to time...  They were REALLY BAD until I stopped the Verapamil.  PVC's (Premature Ventricle Contractions).  Your heart skips beats and stops to try and get back in rythm. 

From time to time I'd be on the edge of my seat just waiting until my heart started beating again from a skip (you can clearly feel it).  Sometimes wouldn't start for 3 or 4 seconds. Scarry stuff...  yea. you can't pay me to take that CR$P Verapamil again... 

If it helps other people's CH then great, but I'll stick to other treatments on this site.  I like my heart beating and in rythm...  You know, makes me sleep better at night just not that long dirt nap Verap had me heading to...  ha...

Jeff

[les genser]

Again, Brew..your point that V. wouldn't be of much concern when starting busting is well taken; I would just add a couple of things to consider.

1. Experiencing V. effects like Jeff describes above, even milder ones maybe, while simultaneously experiencing psychotropics could lead to panic attacks, or at the least a very unpleasant experience.

2. Psylocibe indole, LSD, LSA all have what might be thought of as a second tier effect on the circulatory system and subsequently everything else the end result of which is 'relaxed' blood volume. This is certainly dose dependent and V. may or may not make this scary; which I realize is saying exactly nothing, but I think the possibility should be considered.

3. Anyone considering licorice root as an option MUST be off verapamil and normalized prior to starting. They do not mix well and I'm pretty sure I understand why, but it can lead to absolute skull-f-ed by molten pig iron experiences that are better done without.

[tingeling]

Verapamil is one of the meds that scared me. what happened to me was not good. I started on the lowest possible dose, which is nothing really. First my hands and feet's got white and cold, when i say white i mean white. Then i got bigger and bigger and bigger, i got bigger for every hour almost. My pulse was down at 38 per min, i couldn`t walk more than a couple of steps cause i couldn`t breath and had no strength. After 5 days i could barely stand up straight my lips and nails turned blue and all i wanted was to sleep. Same thing happened with other beta blockers, only i stopped the treatment sooner. Never again. My point with this is that i have a very low pulse and i tried ask the specialist how blood pressure meds would affect this, not a problem was the answer. What frightens me most is the fact that they still think i should try every blood-pressure med i haven`t tried yet and they refer to Magnesium supplement as "dangerous", cause we do not know what scary side effects supplements like this can cause.

[Oscar]

I,ve been taking Verapamil for about two to three years now as a preventive and obviously it is not working or I am taking the wrong dosage (200MG) each morning. I've always had CH but for some reason this season is the worst I'd ever had ,I have oxygen (6 liters) , 100 mg Imitrex (pill form).[ :'(

Welcome to the board, I hope you will find the information here like I did.

I did use Verapamil and that resulted in a everyday dizziness, I couldn't walk upstairs normally and had to rest first. Also the attacks were present during V, never did the dose the doctor said I had to use.

Prednisone, did also not work for me, to much side effects and resulted in attacks that lasted longer so I quit also the prednisone.

Imitrex injection causes rebound attacks and frequency is getting worse by using the nasty injections. You described pills, they also causes me bad side effect.

As you can see most people on this board don't find good results in the meds our doctors described.

What frightens me most is the fact that they still think i should try every blood-pressure med i haven`t tried yet and they refer to Magnesium supplement as "dangerous", cause we do not know what scary side effects supplements like this can cause.

Tingeling, seems doctors are all the same. I visited this week my doc, she said I had to use my Verapamil and Prednisone the same time. I said I couldn't handle both. I use clusterbuster and Red Bull. She said Red Bull causes me heart attacks. I had to use the meds in combination with imitrex. I said I could get heart attacks using Imitrex.

Well she said my meds were far much dangerous. That I did have proof I had great result with clusterbuster she said my cycle is almost over, I said no because it does continue some weeks. Well at least I got O2 and she let me alone with clusterbusters, well that is fine 

[lrosenb]

I had no luck at all with Verapimil OR oxygen. In fact the oxygen, for me, provoked cluster attacks.  I tried every known "cure"-- including magic mushrooms. I am quite sure that what caused my headaches was taking an anti-depressant drug called Welbutrin XL. Even after I stopped the Wellbutrin, and the headaches  diminished (from 10-12 attacks a day to one or two), they nonetheless continued for almost a full year until quite by accident I discovered a cure-- for me-- which was the anti-depressant celexa. I took it because I was depressed. The side effect was that within two weeks I had no more headaches and have been, thank G-d, without them for the past two years. However I will never forget the agony and the hell of those attacks. Never. Ever. So all I can say is, keep looking for solutions. For me, controlling what I ate, easting tiny portions, avoiding all perfumes and perfumed products,  and doing a lot of exercise kept me alive and to some degree kept the attacks less frequent and severe. Staying away from cell phones and laptops also helped. The ONLY drug that addressed the pain was zomig nasal spray. 20 minutes & the pain was erased. And unfortunately the spray DID make the attacks more frequent. Klonopin helped occasionally. You might give it a try and see if it helps you. Good luck to you and don't give up hope.

[Bonkers]

So glad you've found ways to control your headaches, lrosenb. I hope everyone will be so fortunate. Thanks for sharing. I liked the description of CH and your quest to find a suitable name for it in your blog.

Ron