D3 regimen/ Talking to your doctor

[stev]

Hey all, this is my first post. Ive been busting with decent success, but my cycle is still hanging on a bit so i want to talk to my dr about the d3 regimen. I remember finding a link to a print out on this site (i think) a long time ago to help explain the treatment to the doctor. I cant find it anymore. Is there a good resource i can show them? the vitiwiki website doesn't seem legit enough.

Also I haven't yet told my doc about the other, even less traditional, treatments that I have used. I've been hesitant because its a weird conversation. Any advice on having that conversation? Any other print outs of studies that would help them take me seriously.....

My appointment is tomorrow (i probably should have posted this sooner)

[stev]

i found it sorry https://vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708&download=y

advice on talking to my doctor would still be helpful

[Dallas Denny]

Hi Stev!

Welcome to the nut house...err, uh...community I mean!

I've enlightened several docs over the past 9 years of busting.....one lady doc didn't even want to hear it once I got to mushrooms.....a couple listened but weren't on board....and 3 were very receptive to the idea and 2 of those 3 actually asked for the website!  The best was an eye doc a couple years back.....I had listed clusters on my new patient paper work.... they called me and as we were walking back to the testing room he asked me if I was in cycle or remission??  Knowing that he had at least some knowledge of CH, I talked for a good 20 minutes about busting, clusterbusters, and how it had changed my life.....dude never tried to cut me off or hurry me up and was genuinely interested even asking for the cb website!!  When I went back in to pick up my specs a few days later, he did the fitting and told me that he had perused the site and that he would be mentioning it to his other clusterhead patients!! And to top it all off, he was an old jarhead chopper jockey in Nam about the same time I was in country with the 1st Marine Air Wing!!

Dallas Denny

[jon019]

Hiya Stev….welcome aboard! I'd list everything you take for the doc.. and ask if there are any questions or concerns (kinda backwards, I know, but......

I LOVE that story DD! The only time a medical professional ever showed interest learning about CH from me was a Pharm in a hospital (Doc had prescribed intranasal lidocaine...yikes!). Coming off a hit so I only gave her a rambling 20 mins...when I thought about it later I despaired at the opportunity lost...coulda talked for hours...and maybe saved another clusterhead some grief...………..

Best

Jon

Edited November 29, 2018 by jon019

[stev]

@jon019 That list includes busting methods right?


 

[stev]

@Dallas Denny
What do you mean by didn't wanna hear it and werent on board? Did they kick you out, stop treating you, or just advise against it?

Thanks
Stev
 

 

[stev]

I should also add, though I feel it goes without saying, that this site saved my life and I'm looking forward to contributing to this community!

Also that my doc doesn't even really seem clear on what cluster headaches are and is giving me sinus ct scans because they think I have sinusitis, even though last year I was diagnosed with clusters (different doc)......... I was lucky enough to get the right diagnosis right away and now they're trying to walk it back. I'm tempted to just go alone but I want the vitamin tests and should get an mri and stuff.

[jon019]

Yo Stev….an MRI/CT is advisable for diagnosing because there ARE conditions that mimic CH...and may be considerably more dangerous. Did the original Doc order one? 

Re previous question. I don't bust but if I did I would tell my Doc....YMMV. HOWEVER...you REALLY need a headache specialist... cuz a Doc who "isn't clear on what CH is" is a scary situation.....unless he/she is willing and EAGER to "look it up" and then DO something.   Some are...some aren't. Best to have one that already knows.  Many a clusterhead has been misdiagnosed with "sinusitis" cuz the Doc may not have ever seen a clusterheadache patient. I had a life threatening ailment "dicked around with" (quote by the Doc himself) cuz they thought sinusitis (old med proverb: if ya hear hoofbeats think horses...NOT zebras).>>>>>bingo-bango you got sinusitis! 

That said....I have no idea what your Doc is looking at and what your health situation is. You COULD have sinusitis (also)...don't dismiss out of hand cuz of some old cranky clusterhead.... 

Best

Jon

[stev]

Last year when I got a diagnosis they didn't order ct scans or anything. After i described my reoccurring headaches (classic one sided 30min - 1 1/2 hr CH symptoms) they told me i had ch and gave me medrol (6 day decreasing dose), sumatriptan pills and naproxine and said that was all they could do with my insurance (welfare). I was in hell for months (june-september 1-2 k5-10s a day). Then I found the busting treatment. It worked so well that I didn't go back to the doctor because he said "If they go away you can cancel your appointment", definitely a mistake in hindsight. I had previously done psychedelics so I wasn't too worried though.

This August they came back, I busted again, it worked, but after doing more research I realized I should get an MRI or Cat scan, a headache specialist and maybe start the vitamin regimen so I went back to the doctor. They had lost my diagnosis because the computers were down.....(i mean cmon!!!) and are now on about this sinusitis stuff. When I went in for the ct scan of my sinuses I told the machine operator about the cluster headaches and he told me he threw in some extra scans for me. I can only hope the are actually of my brain haha, I'll find out tomorrow.

Waited for an appointment.......and the headaches came back. busted again multiple times to keep them at bay. (i realized that was common after browsing the forums)

Anyway compared to last summer im infinitely better! Ive had like 10 headaches (2 k-10s and the rest k4ish) total over the course of 3 months, compared to everyday. Been headache free for almost 2 weeks with some shadows here and there.

I'm going to continue to try to get a headache specialist and press for more ct scans tomorrow! Maybe I have them already?

Wish me luck

Stev

[xxx]

Hey Stev,

Be sure to ask for the 25(OH)D lab test.  Data from the online survey of CHers with active bouts of CH starting the anti-inflammatory regimen with 10,000 IU/day vitamin D3 and cofactors indicate they all have low levels of vitamin D3.  The following normal distribution chart illustrates the results of baseline 25(OH)D lab tests taken before starting this regimen.

Take care and please keep us posted.

V/R, Batch

Edited November 29, 2018 by Batch

[stev]

Well I just got back and they gave me the right diagnosis! After giving the doc that pdf on the d3 they ordered the vitamin d3 tests and the right ct scans! The sinusitis scan came back negative--of course haha. They also talked about prescribing me oxygen when I start my next cycle.

It went so well that I didn't bring up the busting, didn't wanna push my luck. I figure I'll wait till I get the scans and d3 sorted out.

 

[jon019]

Hey Stev....now THAT'S a winner/enlightened Doc (or practice)! Very happy to see this. Would you mind posting the Doc's name and general area...might help a fellow clusterhead in the area.

Best

Jon

[stev]

Hey sorry I missed this. She's actually a Family Nurse Practitioner. Her name is Jenny Pettersen and she's in the Los Angeles area with Northeast Valley Health Corporation.