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



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

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

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...

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.

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!