[D3 regime after 6 weeks - advice needed]

Hi Batch,

I did check my vitamin D and it was 140 ng/ml. Have you ever heard of Vitamin D worsening the attacks?  I’m not responding to hallucinogenics either. 

[D3 regime after 6 weeks - advice needed]

Sorry to hear that Vitamin D isn’t solving the problem. I’m chronic and did everything you did with the same response. In fact the high doses of Vitamin D seem to make it worse at times. I’m currently busting and have done it twice with limited response. I expect that it will take 4-5 more busts to get some results. Chronics usually need more busts so I’m hoping this will help. 

[Does Kudzu interfere with Busting?]

Anyone have any experience or success with Kudzu and Busting?

[Psoriasis]

On 11/2/2020 at 11:47 PM, Dr. Julie said:

I'm wondering if any other CH sufferers also have psoriasis and if so, do you experience any changes that correlate with your CH cycles at all?

I ask because I've had scalp psoriasis for 30+ years and it disappears when I'm in cycle. I've never been able to shake it before, ever. It comes back when the cycle ends unfortunately but I can use it as a sign when a cycle is starting or ending.

 

Julie

Do you use prednisone to break your cycle? Prednisone will transiently eliminate your psoriasis. Once you stop the prednisone the psoriasis returns with a vengeance 

[Ketogenic diet]

I tried the keto diet and I’m thin and lost a lot of weight but it didn’t help my clusters one bit. 

[Quercetin! Very effective treatment for me!]

I took Quercetin and it did nothing for me but I’m chronic but I was hoping for a miracle. 

[Dr. Todd Rozen]

What is sodium oxybate?  I’ve never heard of it

[Is anyone having success with CGRP Ab drugs?]

I’ve been on Emgality for a few months and my chronic ch have worsened. The drug has done nothing. I’m glad I’m getting it for free.  I guess you get what you pay for.  I am very disappointed. This was supposed to be the savior. Now I have to keep waiting for BOL. which may never be available. Ugh

[Making busting more pleasant]

Hiking is great, but not alone.  Go with a close friend.  Valium or Xanax is key.  I don't think changing or lowering the dose will decrease the anxiety. Vigorous exercise is also helpful.

[Re: nerve block for eye surgery]

most cataract surgery nowadays is done without a nerve block under topical ansthesia although IV sedation is given.  One of the IV drugs could have triggered your Clusters

[Cervical spine botox]

Hi Dan,

I'm glad this is working for you.  I would like to try it, but I need to know the exact locations where the injections were given.  Do you think your doctor could specify in medical terminology exactly where and how much botox was given?

Thanks a ton,

Kev

[A Brief Comparative Analysis of Novel Lysergamides]

What is the RC market?

[What do you use to grind up the seeds?]

I just bought a new grinder and I put the seeds in and I started to grind and the handle broke off.  I need a high quality device that will turn the seeds into a fine powder.  Any suggestions?

[maybe its not the trigimenal nerve but the vagus]

I have severe GERD. I have even had prior surgery for GERD.   I have been taking a PPI in the morning and Zantac in the evening for years.  Unfortunately this does nothing for my chronic clusters.  Zantac is an H2 blocker and drugs like promethazine block both H1 and H2 and also affect dopamine receptors.

[next step LSD]

Hi Sergical81,

I'm an anxious type also.  I take LSD for my CH when I can get it, since it works best.  I also take valiium or xanax with it.  The setting that you dose in is very important.  I would recommend being outside hiking with a close friend on a beautiful day.

[Tumor Necrosis Factor]

I believe Prednisone inhibits TNF.  Is the mechanism known of how Prednisone works for CH?  Prednisone is the most effective treatment for CH although its use is limited due to severe side effects.  Prednisone like Remicade and Enbrel is an immunosuppressant.

[Do nasal steroid sprays like flonase block busting]

I get very congested with my cycles and I tend to use nasal steroid sprays.  Does anyone have any experience or info?

[testerone supplimentation]

Hi Bob,

Glad to hear you're doing well and its been too long since we spoke.  Is there any evidence that the Clomid caused Peyronies disease?

[Botox]

i am chronic and I tried Botox along with everything else.  The first night after the injections I slept pf the whole night.  The beast came back the next night and the botox seemed to have no effect whatsoever.

[Anyone using Kudzu?]

I am having no luck with shrooms, rc seeds, or vitamin d regimen.  I am thinking about trying Kudzu.  Does anyone know what dose to use?

[Flashback questions.]

You might have a retinal tear or detachment. I would reccommseeing a retinal specialist asap

[2012 Conference chatter]

Hello to everyone,

I am coming to my first meeting and  excited to meet everyone.  I am part of the Atlanta group that includes alleyoop and tuckerman48.  Those guys and others have helped me survive and I am doing well because of this board.

I am also planning on winning big betting on college football   8-)

Kevin

[Update -- 2012 Conference in Vegas]

I'm coming to the meeting for the first time.  Thanks to alleyoop and tuckerman48 for persuading me.  Looking forward to meeting everyone.

[I`m back]

Hi Booj or Mom,

I think you should either try higher doses of shrooms or LSD.  I am chronic myself and I only obtain relief when I get mild to moderate hallucinations.  Low doses were not effective for me, but I got huge relief from the higher doses.