New Forum
Supporter's Corner >> Supporter's Corner >> Please, I need your help!

Message started by Mariana on Jun 9th, 2018 at 3:08pm

Title: Please, I need your help!
Post by Mariana on Jun 9th, 2018 at 3:08pm

My name is Mariana and my husband Dave has been suffering of CH for the last 3 years. We didnít know what was happening until recently ( about a year ago). I donít know and he doesnít know what to do. We live 45 min south of Boston, MA. And heís been seeing a neurologist in Mass general. Heís taken all sorts of medications, the only one that seemed to make him feel less bad has been verapamil until recently. We ve tried psylosiblin mushrooms for the last 4 days with initial postive results as the headaches seemed to decrease in their intensity (He has 6 episodes a day aproximately that last about 90 min each) but they stopped working completely. Ever since the CH started he has accompanied his medication with 2 Advils each time and those were the only ones that stopped the episodes for a while. Today, Advil is NOT working. Iíve read some posts from Batch about the vitamin D deficiency so I ordered a vitamin D test to take from home. His doctor doesnít answer and he just looks awful. He looks exhausted, depressed and he literally canít do anything. Please, Iíd like to learn more about vitamin D dosing, or about the mushroom treatment  ( weíve done it in a very unorganized way) or about the oxygen treatment ( he tried it once and didnít seem to help either). Please please please I feel and he feels lost and worried. He said to me that he doesnít want to live like this anymore. Iím desperate.

Title: Re: Please, I need your help!
Post by Sean McE on Jun 9th, 2018 at 4:04pm
I've sent you a PM, log in to read it.

Title: Re: Please, I need your help!
Post by Peter510 on Jun 9th, 2018 at 6:42pm

Welcome...glad you found us.

Cutting straight to the chase, the full D3 Regimen, including load dosing is all in the following link...

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

On the upper left side of this page you will see a number of tabs. The Oxygen info tab (in yellow) is the one you want. Your Neurologist, if he knows anything about Cluster Headaches, should write you a script for this, at a minimum flow rate of 15 LPM with a non- rebreather mask. ( they are the ones with the bag attached).

The D3 Regimen will take a little time to work, as he has to build his D serum levels up, but getting a test now is a good move. Please let us know the result when you have it. Follow the loading dose exactly and take all the cofactors. It has been of significant benefit for 80% of those of us using it, episodic or chronic.

Another thing that can help is to wolf down a cold energy drink (such as Monster) at the first sign of an attack. The combination of Caffeine† and Taurine hitting the bloodstream can help ward off an attack for a while.

I would advise that you immediately read the Oxygen info page and really push your Neurologist for the prescription. Sometimes you have to really fight your corner with this condition.

In the meantime please be reassured that there is light at the end of the tunnel and weíve all been where he is now.

There is always support and advice here, so shout out or ask questions anytime of the day or night. Keep in touch with as many questions as you need.

For tonight, youíve got lots of reading to do.

And we love supporters here, because we all rely so much on you, for which we are eternally grateful.

Keep the faith!


Title: Re: Please, I need your help!
Post by Mariana on Jun 9th, 2018 at 10:21pm

Thank you for your message. I will start reading. Letís see how tonight goes...


Title: Re: Please, I need your help!
Post by Mike NZ on Jun 10th, 2018 at 2:20am
Hi Mariana and welcome.

You've found a place where we know all too much about CH from all of us either having it or supporting someone with it.

First off, I'd strongly second trying the vitamin D3 route for him, as per the link in Peter's post. It has worked well for over 80% of us, with many people, myself included, going CH pain free for multiple years. The document also has a load of info about why it works and if not, what else to try.

For info about mushrooms and other similar options I'd also have a good read and post at - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE.

With verapamil what dose is he on? Many of us need 360-480mg a day, but some go to around 1000mg a day. Far too often doctors have people on too low a dose, but only change doses when working with your doctor. It can also take around 10 days for a dose change to take effect, so don't expect an immediate change.

Since you said that each CH takes around 90 minutes it very much sounds like he has nothing to abort a CH. Peter's recommendations around oxygen and energy drinks really work pretty well.

I've sent you a load of info to read, all from medical journals, so if his doctor says something like "oxygen doesn't work" then you can prove it does using sources he/she can't argue with.

Ask him about reading or posting here. We all know what it is like to have CH before we get effective ways to control and kill them. It isn't fun by any measure. Tell him that things can change and will change. He now has a load of people around the world on his (and your) side, with advice from years of CH experience and countless visits to headache specialists.

Things will improve. Read and fire off questions.

Title: Re: Please, I need your help!
Post by maz on Jun 10th, 2018 at 4:01am
Hi Mariana
Firstly, I must agree with all the other replys.† Get the whole D3 regime sorted out for long term relief.

But in the meantime, Imitrex is the best abortive for most people.† Don't bother with the pills - they take too long to get into your system, but the auto injectors are fantastic and will kill off the worst CH in 7 - 10 mins.

You can only use 2 injections per day and they are expensive, so most peoples first line of defence is oxygen therapy, which is also excellent.† BUT, only if you use it correctly.† You need a flow rate of at least 15 litres per minute, and a non rebreather mask. Get either of those wrong and it won't work.

These are basic standard treatments for CH and for the most part they work extremely well, so I would also suggest seeing a different neurologist too - the one you have doesn't seem to be offering the right things.

Let us know how you get on.

Title: Re: Please, I need your help!
Post by Mariana on Jun 10th, 2018 at 11:19pm
Thanks everyone.

David is on 375 mg of verapamil a day. He tried the monster cold drink today and he said the only thing he noticed was that he didnít feel as his eyes were closing as much or as tired but the pain was still there.

For injections, oxygen and vitamin D he requires prescriptions correct?

Title: Re: Please, I need your help!
Post by Mike NZ on Jun 11th, 2018 at 2:55am
Good on the Monster helping a bit. Ask him to try a room temperature one instead of being ice cold.

Mariana wrote on Jun 10th, 2018 at 11:19pm:
For injections, oxygen and vitamin D he requires prescriptions correct?

Injections will need a prescription.

Medical oxygen needs one, but people have also used welding oxygen which doesn't need one.

D3 doesn't need one, so you can just order it plus the other co-factors from online vendors like

Title: Re: Please, I need your help!
Post by Anthony A on Apr 4th, 2019 at 11:20am
Really valuable information in all the previous posts. I think i'm through my last cycle (crossing fingers) but it lasted 3.5 months. I think what really helped stop the cycle was a depo-medrol shot (not sure how much), 2 SPG blocks a week apart, and changing my verapamil from 240 extended release to 2x 120 rapid release. It very well could have been my cycle naturally ending so things were less intense but, the relief was pretty immediate. I'm also on the d3 regimen (400mg of magnesium oxide in AM and magnesium glycinate in the PM) plus c0q10 and 10mg of melatonin before bed.

For aborting, 02 at 15-25 lpm has been amazing and I wish I had it earlier. I also newly have zomig nasal spray and sumatriptan injections. Thankfully, I haven't needed to use the nasal spray or injections because I got them towards end of my cycle. Before that, I only had sumatriptan pills...for 13 years and those do not work fast enough.

Good luck to your husband!

New Forum » Powered by YaBB 2.4!
YaBB © 2000-2009. All Rights Reserved.