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Gaius

Anyone's doctor on board about busting?

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Broke some more neuro cherries. I have noticed that they no longer are surprised and this last one say's,"You dont take them when the headache is gone do you?" No. "Do they work?" Yes. " No one could blame you then".

I love that answer.

the bb

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"As a West Los Angeles migraine doctor, IÂ’m completely open to any treatment that will relieve may patientsÂ’ pain symptoms, even if it is made from a drug like LSD. I look forward to the development of future medicines that will help patients that suffer from these devastating headaches."

LSD Offers Relief from Cluster Headaches

The Neurological Associates of West Los Angeles.

http://www.theneuroassociates.com/lsd-offers-relief-from-cluster-headaches

shocked

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Yes I have had 2 or 3 primary care MDs that were very receptive and interested. My current general practitioner (it's like going to a fresh scrubbed girl young enough to be my daughter), is open to discussing anything and has the same attitude as my best Neuro ever DR. Peter Schilder of Annapolis, Maryland who simply said "TIM, we are talking about a quality of life issue here, do what you need, we have run out of so called acceptable options". Unfortunately he is no longer in practice and I never managed to cultivate successfully but I was (angel...d) some and had some hope. Ready to try again. Workin on it 8-)

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This is an interesting thread for sure. My last Neuro (well known in my area fro CH) told me to do it lol.... He said have you ever heard of LSD or LSA I told him yes to the LSD, and he sent me to a website , cant remember which one it was (not this one tho) and told me to consider it.

My new neruo never has heard of this or using nitroglycerin to induce a cycle, I mentioned this to him and he said oh there might be a lot of complication with that method , i asked what and he said I would end up like syd barret form Pink floyd in a padded room not being able to hold my own urine. I told him that I wasnt going to but just wanted his take on it.

Needless to say once we got in the car to leave his office I ripped up the Rx for stadol and indomethacin and the pre auth for as much trex as I want for insurance to pay for - went home continued to slam red bulls while I was detoxing and then acquired fungal medication and started busting the next day - then again 4 days later then again 5 days later - and have not had any issues, I can still hold my pee.

What bothers me is that when I am in the waiting room for this guy and there are 5 sales reps from the pharmaceuticals companies sitting there trying to get in to push new medications - yet something so natural that has been growing out of this earth for 1000's of years is deemed bad for you. Why is this - is it because pharmaceutical companies cant really patent a natural growing fungus? I have been pain free now for almost 4 weeks and have no hesitation on telling my Neuro during my follow up in April. I just don't care. In fact I have been thinking about just cancelling the appointment all together. They called me the other day and asked how I was doing and I said I have managed to break my cycle and doing great. The next day a call again and she said the doc was curious as to how you know your cycle is gone and how did you break the cycle. I said I will talk to him about it during my appointment.

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and he said I would end up like syd barret form Pink floyd in a padded room not being able to hold my own urine

OMG,  :o I wonder if he was serious. Can't be. It was just to scare you off. I can't see a neuro claiming such an urban legend.

Syd Barret was obviously schyzo for sure to start with, and I'm not sure he even ever took LSD at all.

It's even disgusting to hear professionals say such stupidities, All I have been reading on LSD these past weeks tell of a very low toxicity drug, and I feel it's impossible a neuro didn't at least read some info on LSD in their studies, as they could be called to treat someone who is doing an LSD badtrip, and they must know Vallium is then what has to be given to calm down the overtripping. I mean they have to know this. LSD has been legal and used under medical conditions for 20 years before being banned. If they don't know, I wonder what they know exactly.

I'm shocked

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What bothers me is that when I am in the waiting room for this guy and there are 5 sales reps from the pharmaceuticals companies sitting there trying to get in to push new medications

I posted my anger about possible links between pharmaceutical companies and neurologists recently, can't remember where, think it was on CB.com (maybe CH.com) but some people replied I was wrong thinking this way, and a neurologist from Boston posted here on CB.com about this (another thread), saying the pharmaceutical have helped so many people... and that he was shocked to hear people think the doctors and the pharmaceutical companies are linked commercially. He said the only aim of any doctor is to help heal the patients and that the pharma helps that, and that no one should bash them.

Well It's true the pharma has helped many sufferers of many pains and diseases through the years, and they would help us too if our substance wasn't class 1 prohibited.

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Hey Purp,

Guess what shirt I had on when I saw my Neuro - Pink Floyd Pulse shirt lol - he asked if I knew who syd was in fact.  I too think he was trying to scare me away from it. I laughed when he told me that. I knew many kids in high school that would take hits of it all the time and one is a surgeon now lol.....

It is true the bi Rx companies have helped many people, but I am in the medical field per say and there is a saying that PX companies dont really adhere to but the hospitals are sure held to it - its called people over profit lol..... something I think they forgot - otherwise i dont think i would see so many tv commercials trying to get people to take all their drugs, i love the side affects that they have to read off too - however i bet there is another drug they make to counter that side affect lol.....I dont know when the last time we actually cured an element in the world where we actually solved it and cured it such as polio. I think all RX does now and some docs too is treat the symptoms and not cure the cause.

Sorry I am bitter to some of them as you might be able to tell lol...

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I think all RX does now and some docs too is treat the symptoms and not cure the cause

hmmm yes, I agree, and yes they are profit driven... Yes they invent more drugs for the side effects of the first ones... Yes I had bad side effects on verapamil-lithium and my neuro seems to think that's normal...

My grandpa was a countryside doctor starting in the late 1920's and I got my hands on some of his books (published in 1895, 1912 type thing) and it looks almost like shaman books, with natural products and herbs recipes... And he was known to look at the patient for very long minutes not talking... thinking (very intimidating apparently)... and was known to give accurate diagnosis. He apparently could tell the sex of the baby by listening to the heart beat through the mother's belly. I don't know if this is all true, he died when I was 3. But it seems to me he was using his intellect a better way than today's doctors who just apply what they have learned by heart.

But still, we'd be quite lost without our hospitals and all  the Rx there. I still rather this than be lost in the jungle with a bad fever

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I'm trying to muster up the courage to talk to Dr. about this. I'm afraid that because of my young age (21) he will not take me seriously. My mother also comes with me on the Dr. visits and I have not told her at all about busting, or the research I have done to prepare myself while waiting for the day that I will bust for the first time. But man am I grateful that I found this site.  :)

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I'm afraid that because of my young age (21) he will not take me seriously

firesidefun18, chances are he won't, and it seems to me you're age will only play a little role in his reaction. Be aware that no Dr can associate with this without risking professional consequences.

Myself, I will meet my neuro in 2 days to get the results of my blood tests. I'm still not sure I will tell her about busting, but I think that if I do, she will react by saying she cannot see me anymore as a patient.

According to your other post, you're a migraine sufferer. Are you sure busting is the best solution for you? I'm certain more experienced players (than me) can guide you better on this board.

Don't be shy and do post and ask questions, start threads...

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I have made up my mind not to bring these up to the doctors anymore. I have told them about mushrooms, liqorice root and vitamins for an example. Mushrooms are obviously drugs and I have mental problems wanting to use them. Liqorice root and bigger than usual amounts of vitamins are danger to my health. But all the drugs they have prescribed are ok.

I was laughed at in the nineties when I told them I have heard of using oxygen in these suicide headaches. Near the millennium I was laughed at again, when I told them I had heard about using melatonin in CH. 10 years later same doctor that laughed at this, prescribed melatonin to me - he had forgotten the whole thing.

Doctors seem to be unable to say "I don't know" or "I will ask somebody who knows" or "You seem to know more about this than me" - to hell with them.

:D

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No. But I am going to tell him that since he wouldn't RX O2, I am using welding O2. Bet he squirms. :D

Also, when I tell him that I am still in cycle, he will ask "Why didn't you call?" Ah, because last time I had to fight, via your receptionist, to get short acting Verap, not the long acting $hit!!!! And you won't see me but twice a year and it is a 3 month wait!!!! ::)

Mine is an idiot and I know it. But, the only one within 100 miles, so stuck I am. >:(

But, now it is OK, cause I know more than he does!

Oooooh: What a red face he would get if he knew I said THAT. :D ;D 8-)

spiny

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We have been lucky and unlucky.  My husband has suffered with regular migraines we "think" since about 12.  of course they were diagnosed as sinus headaches and allergies for years.  it was not until he met me and had an attack and needed a dark room....my kids said oh you're having a migraine.  Then in July 1994 he had his 1st ch attack.  i don't know how long it lasted but i do know that from then till now...he has only had 7 months completely free of all headaches.  he had gotten his hopes up that maybe they were gone for good. he's turning 50 this year and i remember we were told when they started that the average was 30 to 50 and he got them at about 30 so we were hoping.... then in may of last year he started a new cluster  4 to 5 a day 

anyways the first time he became aware that it was a migraine and not a sinus infection, his GP went and got a huge book and read it to us and prescribed ????  don't remember what it was but it was recommended.  hubby and i hit the bookstore and i was lucky enough to be aware that there was a migraine clinic in the area and got him an appt.  the GP always said i don't know, not my speciality but wanted to know ever piece of info we got.  this was back before the Internet was as widely used as it is now.  that migraine clinic had hubby sacked out on all kinds of drugs that he ended up doing the junkie nod.  stadol and a list of at least a dozen more.  i ended up contacting the author of some of the books who took him on as a patient.  hubby is lucky he has me to fight w insurance companies and threaten the ER that we are walking if they don't give him a shot after 4 hours of questions.

the author ws 4 hours 1 way, so we found another local doc who unfortunately threw narcotics at him too.  then a magazine article led us to another migraine clinic, then that doc left and they referred us to another amazing doc.  she was the 1st to do the botox with us.  unfortunately she moved on to greener pastures but ended up referring us to this amazing doc who my husband just loves. 

he is aware of research and believes in people helping themselves.  he is aware that hubby has tried it all and knows that this works.  he is also aware there are legal ramifications.

with all this said.  hubby retreated to bedroom hours ago cz crunching all day when not at the 7 level.  i have been reading this stuff all night and just ordered 500 seeds and i am going to order a new mask after i finish this

i was looking for something like this back in 1994.  just someone that REALLY knows what he goes thru. 

thank you everyone for all your help

wife of ch sufferer

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welcome! 

hubby is lucky he has me to fight w insurance companies and threaten the ER that we are walking if they don't give him a shot after 4 hours of questions.
i know you're not boasting here -- someone to advocate for you when you're suffering so much for so long is a great thing!

stay in touch.  (maybe start a new thread)

i suspect that you have read these files, but if not, please do:

"detox" and interactions: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290130731

seeds and preparation: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974

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I'm hoping the gentleman I'm seeing today in about an hour is a bit more lax on "alternative" medications than the lady I saw last month. But they seem genuinely *excited* to have me as a patient, so lets see how this turns out..

My regular doc is neutral to busting. She really doesn't know enough about CH's or clusterheads, so in her opinion is "If it works, it works. I just can't legally tell you to do it or I'd lose my license."  :-X LOL

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and she's right

it must be hard for doctors, even when they believe in busting they also have to be very careful not to lose their livelihood. 

i went to see the GP today and referred him to this web site and the recent spot on abc news boston,  it helps that harvard medical school finally lending some credibility to busting but still a tight rope walk for doctors

yes your right about the support.  i hope that everyone out there has someone that can help them thru all this.  i'm sure i'm preaching to choir about being in too much pain to deal w much.  i'm human too.  most days i can be a supportive wife, and others it pisses me off that he can't do much around house to help me and i'm the one who has to work full time.  but sanity returns and i remember he didn't ask for this. 

he's working on the detox thing and apologized for future grumpy moods.  lol  seeds should be in by tmrw or fri.  busting sat.

i have a funny question.............mushrooms is something that he used recreationally a long time ago.  has anyone found that they needed higher doses cz they had done this in the past?  he's not afraid of a trip cz he's been there done that.  doing seeds sat so we know he really won't get high on them.   just courious cz planning on some farming

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mushrooms is something that he used recreationally a long time ago.has anyone found that they needed higher doses cz they had done this in the past?

Certainly not. Just 5 days and it's as if you had never done any ;-)

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I had an appointment with my neurologist today to get my blood tests results (testosterone, vitamin D3 and a bunch of other standards).

I wasn't planning on telling her I joined Clusterbusters, but the first thing she told me is: "Ha ha... your blood test stooled you, you had stopped lithium."

So then I admitted to her I had lied, and that last time I saw her I was already detoxed from all meds. Then I told her about CB... She told me: "Oh, I don't know about LSA, what seeds do you say? But what is the most efficient is mushrooms, better than LSD"

- Oh, you know about that?

- Well of course, she said, we don't live in an ivory tower.

She was really curious about the seeds, asked me how about I prepared them, where I got them, why I had chosen these over mushrooms... told her it's not easy to get mushrooms but that we can order seeds online. Told her about Albert Hoffman and his finding that LSA was very similar to LSD and Dr Sewell writing about LSA... Told her what I know about the brain and hypothalamus... she seemed to think I was well informed... better than her :P

But she was skeptic about the LSA ending my cycle: she started counting days... "5 here, 5 there... it could be your cycle was just ending"

- Nope I said, I would still be on verapamil and lithium and suffering if not for the seeds...

True I wish I had taken these at the beginning of my cycle, not middle, but anyways, proof or not... I know what I know.

She took lots of notes when I explained why I decided to stop verapamil and lithium and she seemed surprised at some of the side effects I described (had a tooth that was starting to pull out... that's verapamil) and my fears of long term and permanent side effects from lithium.

She assumed I will not be returning to see her again and wished me well and good luck. But I just might go see her again if I get another cycle, to get an O2 prescription.

I wasn't too happy about how she presented me the test results though, saying: normal, normal, normal... Not that normal I found out after, coming back home and checking it out. I posted on CH.com about my testosterone level, very low according to me, normal according to her the lab test report, and the vitamin D3 test was not done, a note on the report said my blood will be put in the freezer for 4 months... What? I guess they only do these tests a couple times a year she answered...

It's all covered by the state health care over here, so that's that: you don't pay so here's what you get  :o

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MoxieGirl: wow I am shocked. Honestly and truly your doc sounds straight up awesomely open minded. How old is she? 

I worked up the nerve to talk to my neuro about his knowledge of medical MJ in other states, and what he what his personal feeling of it where. But first I asked his student resident (im I forgot what their called sorry, lol) to step out of the room, bc idk how he'd feel about answering the question in front of him then I asked him to close my file and put his pen down(which he refused and said if it pertained to me he could not). and then was shocked when I asked him about the use of medical MJ as a natural alternative to treat severe migraines (not leaving anyone out, just a personal question). He said he had not done any research on the subject and that, he did not know of any being done research being done in the state of FL. Alabama is pending for medical MJ as we speak. Yep, really. But nope not,FL wasnt even heard by the courts,just waved off.

How ridiculous, as a Dr. are you not suppose to attend medical convections and exhibitions to inform yourself of new forms of treatment, unconventional or not. Knowledge is power. Why should you be shocked when your patients brings something up.  Rant, sorry. Glad your doc is uber cool tho.  :)

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Had a very good visit with my new neuro.  It was a follow up that i had forgotten about or I would have cancelled. 

So, been pain free for over a year now thanks to the fungus.  Amazing fungus it is.  So, went to the appointment, saw his PA, as I didn't really have a need to see the doc that day.  The PA came in wearing jeans, a polo type shirt, and flip-flops.  Yes, flip-flops.  He sits down, says in a very southern, comforting way, "how ya doing?".  I thought, screw it.... he is going hear about the mushies.  I said, "great doc... almost a year pain free.  You heard of Cluster Busting? "  His face lit up, then he begins to give me directions to a cow pasture, and tells me he thinks he saw some growing today on his way in..... I almost wet myself.  It was awesome.... needless to say, I love my new doc! and his staff!

The neuro (first visit, not the PA) asked me if I knew why divorces were so expensive, then he told me because they are worth every penny... LOL... yes, I do love my new doc.

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ok, I'll be the one to ask...Why do people go to the doctor if they have success with the psilocybes, seeds etc??  I seem to be allergic to the doctors offices or something because it seems like the last place I would go except for a check up, dentist, or something specific/emergency etc.

--The Shaggy :D

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Why do people go to the doctor if they have success with the psilocybes, seeds etc?? 

Sometimes you get hit and no alternatives are available. ;) Sometimes they dont work 100% of the time, for whatever reason, they still need to hear hear from us how effective they really are and what we are doing so as not to interfere with other treatments that may be implemented?. Whenever you have a cluster attack it needs to be documented on the medical record.[smiley=2vrolijk_08.gif]

bb

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His face lit up, then he begins to give me directions to a cow pasture, and tells me he thinks he saw some growing today on his way in.

I think that may be the best doctor story I have ever heard   :D

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