Hello everyone!
    My name is Erik, I have been just recently diagnosed with atypical CH from my neurologist. I have episodic cluster attacks, usually every 3 years for 3 months at a time. The first time was thought to be sinus related, and it wasnt until the start of the second that I was finally recommended to a neurologist. Sadly couldn't do much treatment as I found I was just ending cycle at that time.
  Now have started a 3rd cycle and have just gotten back to my neuro for him to confirm. He has put me on verapamil 240 a day to start as well as a prescription for oxygen at 12L/min to 15L/min. The only problem is I thought I had a supplier lined up but they stopped selling oxygen at the end of July!
   So I am wondering if anyone here has advice as to where I could get this filled in the Inland Empire area of Southern California. I have not tried to see what my insurance will cover, my neurologist acknowledged that they always give issue because of the blood-gas level thing. So this would be out of pocket and I have no idea how much it will cost. Thank you all again for your support, have been reading on this site but didn't register until now.

Erik SoCal wrote on Aug 22^nd, 2013 at 2:54pm:

Hello everyone!     My name is Erik, I have been just recently diagnosed with atypical CH from my neurologist. I have episodic cluster attacks, usually every 3 years for 3 months at a time. The first time was thought to be sinus related, and it wasnt until the start of the second that I was finally recommended to a neurologist. Sadly couldn't do much treatment as I found I was just ending cycle at that time.   Now have started a 3rd cycle and have just gotten back to my neuro for him to confirm. He has put me on verapamil 240 a day to start as well as a prescription for oxygen at 12L/min to 15L/min. The only problem is I thought I had a supplier lined up but they stopped selling oxygen at the end of July!    So I am wondering if anyone here has advice as to where I could get this filled in the Inland Empire area of Southern California. I have not tried to see what my insurance will cover, my neurologist acknowledged that they always give issue because of the blood-gas level thing. So this would be out of pocket and I have no idea how much it will cost. Thank you all again for your support, have been reading on this site but didn't register until now.

Hi Erik,
Sorry to read you are in cycle, but you came to the only place where people are more knowledgeable about CH's than the doctors are.

Verapamil 240mg?  That's a good starting point, but still low for CH's.  Is this immediate or sustained release?

Any transitional med such as Prednisone to go with the Verapamil?

When is your next neuro appt to discuss how the Verapamil is doing or are you able to just call it in?

There are many neuros in SoCal that are very familiar with CH's, so if you are not pleased at any point; please do not feel as if you are trapped with this neuro.  We can always assist you with referrals to specialists who are CH educated near you.

I would recommend you look on your insurance medical provider list and/or call the insurance company to find out who offers medical o2 in your area.  Submit your script to them and setup your delivery. 

Your insurance should not care about the "blood gas level thing' as there is no "blood gas level thing" as it relates to CH's.  Additionally, 12 lpm to 15 lpm is pretty low.  Ideally you have 25 lpm+, but you can always get your own high flow or welders regulator and customize your tank, once you get a tank. 

If you must come out of pocket for your o2, you might consider just purchasing a tank from a welders supply store and own it.  Go get refills as needed.  This might be a less expensive and less hassle way to go, if you will have to come out of pocket for o2.  No delivery available, so you will need to transport on your own.  Do not tell them you are breathing it.  See the yellow tab-left side of your screen titled "oxygen info" for more details.

Do you have a NON-rebreather mask?  If not, see the yellow tab-left side of your screen titled "CH.com store" and have one shipped to your home so you can abort attacks.

PF Wishes ;)

-Gregg in Las Vegas

Thank you for the welcome as well as the advice. The neuro is good, he actually was the first to mention CH as a possibility 3 years ago and gave me quite a bit of information about treatment. First words out of mouth, need to get me on oxygen asap  :).
Yes I know fairly low starting, but he has me calling him in 4 days from today (started yesterday) to let me know how it is progressing and if I need to increase dosage. He wants to see what is effective and has mentioned depending on how bad it gets to consider the imitrex injections, but only if needed.

I have looked around, found a number of providers now for o2. Havent yet called for insurance on it, however got one quote for $32 for a tank rental, $32 for refill on an H size tank. $22 at a different provider but that is for a E size tank, with too low a flow. Am looking into ordering a high flow regulator, possibly from LifeGas? H tank provider is calling me back in regards to flow capacity.

As soon as I found I was back on cycle ordered a non-rebreather mask from this site :D, knew I was going to need it. My cycles last about 3 months with 3 years remission on average so far so not sure if owning a tank is best solution for me at this point.

Erik,
Great you are pleased with your neuro, but I think based on what you wrote, your neuro is not fully understanding the severity of CH's. 

Ya see, there are those who arm their soldiers for war and those who arms their soldiers for one battle.  You mentioned your neuro will prescribe Imitrex injections "depending how bad it gets", "only if needed"?  Seriously?  Why not when you are there?  This tells me that your neuro doesn't understand the pain intensity nor understand CH's.  I for one have zero patience for this type of ignorance, especially when it comes to somebody who has earned the degree of "medical doctor". 

The good news of what you wrote is that you were welcomed to contact him within four days to check on progress or not.  Verapamil 240mg?  That's a good starting point, but still low for CH's.  Is this immediate or sustained release?

Any transitional med such as Prednisone to go with the Verapamil?

If you haven't figured it out yet, you most likely will have CH's for the rest of your life!  So investing in an o2 tank is probably one of the best investments you will ever make, providing of course insurance continues to be an ongoing problem for you.  Why not just get it out of the way with one life time purchase opposed to dealing with this bs every three years when you go into cycle?  Think about it, isn't dealing with regular life while in cycle tough enough? 

The big question in your mind when comparing tanks is practicality.  Will you most likely be at home when using the tank?  If so, get the biggest tank available.  i.e. I am home most of the time when in cycle, so I chose the largest tank available, estimate 4 feet tall and holds 200 cubic ft of 100% o2. 

If you will be traveling most of the time, well then a few small tanks might be most practical for you.

One thing is for sure, the more you breathe, the more you will need to refill.  Hyperventilating o2 for 15 minutes six times daily can add up quickly.  Definitely become very familiar with the oxygen tab on the left side of your screen and don't be shy about asking questions here. 

Great you got the non-rebreather mask.  As for the high flow regulator, you want to get one that can easily provide 25 lpm so you can hyperventilate and abort attacks quickly.  There is a place out of Indianapolis that many of us get high flow regulators from.  They are custom ordered.  The place is called Flo-Tec and will cost you around $150--$175 including shipping.

Also you can get a welders regulator today for less than $30 bucks, your local Harbor Freight Tools store.  Just keep in mind that your tank size will determine the connection used for your regulator choice.

You give the word and rest assured, we will help you get through the insurance bs and also finding a neuro who doesn't play games. 

-Gregg in Las Vegas

Quote:

So I am wondering if anyone here has advice as to where I could get this filled in the Inland Empire area of Southern California.

Have you tried Apria Healthcare? I have used them in the West San Fernando Valley / East Ventura County area with HealthNet (100% coverage), Aetna (100% coverage), and lately Anthem Blue Cross insurance (90% coverage). My latest script got me an "M" tank and an "E" tank, which cost me $13 since insurance picked up 90%. They should last about two weeks until I need refills, based on current needs.

As for the blood gas level thing... it isn't relevant for cluster headaches. Be sure the prescription says it is for cluster headaches. Apria Heathcare will provide regulators with flow rate based on what the prescription specifies (except I had to call them and get the regulators exchanged when they messed up).

Just a follow up, and thank you all very much for your responses. I was able to find a local company so far, got an H tank dropped off and very glad to know that the treatment is effective in aborting my attacks. Will continue to look for a couple good personal regulators and a more portable tank solution to see if I can actually try working a bit. Quality of live however is very much improved. Ahh, quick question about verapamil, is it ok to take with nyquil? Wife and I both caught something last couple days...

If you are in cycle right now then Nyquil isn't something you should take as Alcohol is a definite trigger.  Nyquil is 35% alcohol.  If you have a cold better to take something without alcohol in it.

Linda

Ahh, sorry that is true, though to be honest I am not sure, is the liquigel also with alcohol? That is the one I was planning on taking. I do avoid alcohol like the plague while on cycle.

Hey Erik,

Welcome to CH.com.  You've come to the right place.  Shoot me a PM with your email address and I'll send you a paper on oxygen therapy at flow rates that support hyperventilation as the fastest and most effective method of oxygen therapy to abort your cluster headaches.  The paper also includes a section on the anti-inflammatory regimen with 10,000 IU/day vitamin D3 as an 80% effective cluster headache preventative that costs around 20 cents a day...

Colds and flu deplete what little vitamin D3 reserves of 25(OH)D you have in your system very rapidly...  You need to replace these reserves...

We've been tracking over 400 CH'ers here at CH.com using the anti-inflammatory regimen with 10,000 IU/day vitamin D3 and all who have gone in for the 25(OH)D lab test before starting this regimen have come up deficient. 

The normal reference range for the 25(OH)D lab test is 30 to 100 ng/mL.  The odds are your 25(OH)D is below 30 ng/mL... i.e., deficient.

If you want to read more about this regimen check out the following link:

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

If you want to read what your fellow CH'ers are saying about their experiences with this regimen... and how it has prevented their cluster headaches... check out the following link:

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

Take care,

V/R, Batch

Welcome Erik - good luck to you for your cycle!  Glad you are learning a lot and getting some good advice.  Have you tried Energy drinks at all when you first feel a CH coming on?  Helps speed relief for many.  Also Melatonin helps me for sleeping.  Good luck!