Hello All,

I'm new to the message board, but not new to the site.  I've been helped immensely through reading your thoughts, suggestions and experiences, now it's my turn to introduce myself.

My name is Chad and I'm 36.  I've had clusters for 6 years, the first 4 being episodic (only got them in fall/winter months) and now chronic.  As with a lot of you, I went through three neurologists until I found a decent one that knew anything.  I won't go into detailed accounts of my experiences- we all know how terrible they are and we all deal with pain differently.  I understand and relate to all these posts and know that sometimes it helps to vent.

I'm currently on 200mg of verapamil daily and use O2 and Imitrex 4mg injections for abortives.  Thanks to this site, I've also found relief from heavily caffienated beverages when the shadows start.  These are the only things I've found relief from (long term, I don't count the short relief you get from prednisone- for me they always start back up right away afterwards).  

I've only been on the Verapamil for less than a year and it really inturrupted my CH's for several weeks.  Then they slowly started occuring more frequently, although less severe.  The last three weeks I'm back up to 3+ headaches a day progressively more severe (usually 11pm, 2-3am and 9-10am) and am wondering if more Verapamil will do the trick?  I've been told this is a relatively low dose.  Sure, I can talk about it with my Neuro, but I'm interested in what you all have to say.  I'm also under a lot of stress lately and know from experience it can be a trigger.

Also, another question for you all out there.  Where are you getting the high-flow O2 regulators?  I've been told by Apria (sometime ago)they only have regulators that go up to 8, I've seen you all talk about 10-12-15?  Are these readily available?  I've only seen them for sale thorugh UK vendors along with the nice masks.  Anyone have experience with these companies?

I apologize if I can't reply right away, I certainly appreciate and look forward to your feedback.  Thanks to all of you and this site.

Hi welcome-

200 mg is a low dose of verap- many here take much more than that.  I took 660 mg at high cycle before my hits stopped.  I am not the expert on oxygen- I've used it but had a low flow regulator and as I began hunting for the high flow regulator, HA's frequency diminished greatly.  tank ran out and I didn't get another tank

You can get a regulator on ebay -

Hi Chad!

I am glad you found us!

The level of verapamil that you are taking is very low.  Talk to your doctor and go to a higher level.  Many take as much as 900+ per day, but you need to be monitored to watch for any problems.

You may find that you need to add a second medication, in order to get relief.  Things like lithium, or topomax are common helps.  Read all you can from this site, and then discuss them with your doctor, to get on the right medication and level.

As far as the oxygen regulators, I buy most of mine from eBay.  They have them at very reasonable prices.  If you are buying one, look for one that goes up to 25LPM.  Even if you don't normally use at that level, it is nice to have that capability.  Let me know if you still can't find one.

I hope this answers some of your questions.  Ask more, if you still have them.

Chuck

among other things, I take 1200mg of verap/900mg lithium.  The verapamil has mostly been good to me.  I have never been on a dose that low and thats about 8 years now.  Up it unless you have low BP.  Or you can add lithium with it or just take lithium by itself

My M-tank and E-tank from Apria, each came with 15lpm here in southeast Michigan. You may need the prescription to show 10-15, or 20-25 etc. 10-15lpm works great for me. Welcome aboard,   Don         

Thanks for the responses, good stuff.  I already found a regulator, and am looking for a good mask.

Obviously, I'm on a very low dose of verap.  Thanks for putting it in perspective.  

Be sure to get a NON-REBREATHER mask. You can probably pick up one at any medical supply store that handles O2. Or go by a firestation. They usually have them by the gross. Take some cookies and they'll probably give you one.

Hugs BD