Just diagnosed with clusters

[Mrskgood]

Hi, I'm new to this forum.  I have struggled with chronic migraines for 5 years, I have Botox every 12 weeks for them.  I was recently diagnosed with cluster headaches and prescribed Verapamil and O2 therapy.

I've been reading a lot on this page and am interested in busting.  But, where do I start?

How do you deal with the pain? I get so agitated and snappy during one, I feel like everything is moving.  It's like I want to crawl out of my skin and find a new shell lol.

I just feel very lost.

[xBoss]

Hello MrsKgood, welcome to the forums.

 

The theory & implementation forums is where the busting talk takes place. Sorry that you have to join our club  BUT, you found a great place for relief!

 

[CHfather]

Mrsk',  Please start by clicking on the blue thing at the top of this page that says "New Users - Read Here First."

For non-busting info that might be helpful to you, please read this thread: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/    

The great folks here will be happy to answer any questions, but it's best if you start with that knowledge base.

 

[Freud]

Hi Mrskgood, 

welcome, sorry you have to be here but this is probably the best CH resource out there. As CHF states the blue button is a great place to start. Many of us “bust” but not all of us for different reasons. You can find info on non busting remedies like Batch’s vitamin D protocol and the gamma core device. It sounds like your doc has you started on the most appropriate first line treatments. Your verapamil may need to be turreted up to a high dose as high as 1000mg for some of us. You need serial ekg’s and is best to be followed by a cardiologist while titrating. Your dose can be increased every 10 days or so. Oxygen will be your best friend and most of us require flows at 25LPM (requiring you to buy your own regulator online I buy from wtfarley I can help you narrow down which one if we know what size tanks you have). The other thing some of us use is imitrex injections. Pills are usually useless for CH but they should be used sparingly for higher KIP level CHs. Search for KIP pain scale which was created for CHs. You can get rebound headaches from overuse. It is also accepted here that too much imitrex increases frequency and level of pain. 

Edit: if you are getting sumatriptan injections I suggest asking for zembrace. It’s sumatriptan but it’s only 3 mg per injection so you could use 4 a day if you get a particularly bad day. Most insurance companies will only pay for 4 boxes (16 injections) a month. 

Edited May 13, 2019 by Freud

[Freud]

This one is for the smaller E tanks, I suggest asking for a few of these so you can travel with them. I keep one or two in the car E tank 25 LPM regulator

the large M tanks is what I use at home this is the regulator for the M tanks https://www.wtfarley.com/Oxygen-Standard-Body-Click-Regulator-CGA-540

when buying them make sure you pick the 1-25LPM regulator. 

This company may be more expensive than some you can find on amazon. But I have found the cheaper ones made in China say “brass where critical” and the Farley regs are made with all brass. 

[Zookah]

Hi mrskgood im sorry you have to be here and i felt the same way you did a few weeks ago i highly suggest trying Batchs vitamin d3 regimen as a preventative. I know they say every cluster head is different but its worth a shot before busting as you take vitamins as a preventative. Since loading the d3 and other vitamins the pain of the attack has been reduced for me and i use the oxygen to abort them. You're in the right place and hopefully you find something soon that works for you! 

[Mrskgood]

Hi Freud,. Thank you so much for the link for the regulator, I've been looking for it.  Currently I have 2 M tanks that I can't use because they haven't delivered the regulator yet. I also have several smaller tanks that they have been providing me with with a 12L flow but, they only last 45min.

Hi zookah, I am definitely going to try the D3 regimen as I am petrified of mushrooms and lsd, lol.

 

Thank you everyone for reaching out it means a lot 

[Siegfried]

Hello,

If your migraine attacks shows cranial autonomic symptoms, there is a good chance that the O2 will also work for migraine but the approach is different. I will tell you what works for me:

CH: Need the Optimask, 15 liters/ min for 15 min but in my experience the oxygen start to work already after the first minute. Breath deep in and out through the mouth and with every outbreath, make sure your lungs are as empty as possible by doing an extra crunch. I can seldom abort an attack but it bring the pain down with around 70-80 % after a few minutes of oxygen.

Migraine: A normal rebreather mask, that will give you lower oxygen concentration works better. The Optimask does not give good results for me. Breath through the nose only, slowly and try to get the oxygen go up to the sinus as high as possible. Don't breath through the mouth... that will do nothing. Do at least 30 min. Very important for migraine is that you need to be on time. Once the attack really sets in, then oxygen will not work anymore. While with CH, oxygen can still bring down the pain with 70, 80%, it will not happen with migraine. The pain will at maximum decrease slightly during the therapy but when you stop oxygen, a few minutes later it comes back and even harder than before. So it is very important to start a the slightest sign of migraine. With lots of experience and timing, you can use oxygen as preventive.