I posted a few weeks ago back that after 7 plus years my clusters were back and seemed worse than ever before. Or maybe I had just forgotten how bad these could be.

Well, I was able to see my primary care doc and had printouts of all the information that several of you had given to me. Of course I was pushing for O2 O2 O2!  I had a feeling she wasn't going to be able to give me the O2, which was the case. She had to refer me to a neurologist so I have two more days until I see him. She did put me on 240 MG of Verapamil once a day and gave me samples of Treximet.

I tried the Treximet the first night and had one of the longest attacks yet - plus I felt like I was going to throw up in addition to the cluster so I doubt I will be using it again. I thought the Verapamil was helping some because the second day I didn't have a cluster during the night - but that only lasted one night, so......

I had read here on the boards that energy drinks with Taurine sometimes help so I headed to Target and picked up some Monster drinks. I also found 2.5 oz Monster shots with the same amount of Taurine, caffeine, etc so I picked those up as well. Much easier to down a 2.5 ounce shot than chug a 16 ounce can!  I have to say that drinking these have greatly shortened the length of my night time cluster once they start and lessened shadows during the day. Doesn't help getting back to sleep after drinking these but you do what you have to do, right?

Anyway - looking forward to seeing the neuro and hopefully getting O2 so we'll see....

Hi Kristoffer,

As you found out, Treximet hasn't shown effective with CH.  It simply takes too long to work.  I too had to get to a Neuro before getting O2 perscribed.  

Either way, good on you for bringing yourself up to speed.  There is no more powerful beast killer than an educated clusterhead. [smiley=thumb.gif]

A word of caution...  While I think you are ok combining a single energy drink with 240mg of Verapamil, be very careful and listen to your body.  The Taurine in energy drinks and Verapamil are both calcium channel blockers.  Block too many calcium channels and you can have heart rythm problems.  It's not a place you want to be.

I ran into this one night while taking 400mg of Verapamil and drinking two 1000mg energy drinks that day.  It was a very scary experience.

Good luck with your Neuro appt.  I hope you get the O2 script without any trouble.

-Dennis-

Not much to add to what Dennis said. Do be ready to lovingly and tactfully push HARD to get the oxygen prescribed. No side effects, cheap, and amazingly fast acting. If I get on the oxygen as soon as I feel the tingle starting, I can be pain free in as little as 6-8 minutes. An absolute miracle compared to the old days of 90 minutes of rocking and rolling!

Joe

I didn't know about the possible side effects from the Taurine and Verapamil, so thanks for the info. I will pay attention to that closely.

It seems like getting the O2 prescribed from the neuro would be easy since it sounds like it works so well for so many people. I would assume they know about it and would prefer to give that as opposed to medications, especially since most I tried in the past didn't work.

Amazing that your doctor is giving you a hard time about the O2!!!!
Good luck getting that O2,  you will be so surprised at how well it works.  Just make sure that they give you a non rebreather mask, with the high flow regulator.
Christine

And print out the info from the "oxygen info" tab on the left. It gives you the info in case your neuro is not up to speed on oxygen therapy for CH. Keeping our fingers crossed for you!

Joe

There are no good reasons for a physician in the US to refuse to prescribe oxygen therapy for acute cluster headaches when they tend prescribe far more invasive medications like verapamil as a preventative or imitrex as an abortive.  These medications are very expensive and both have a long list of side effects.  The same is not true for oxygen therapy...  Oxygen can also be combined with other cluster headache medications.  There are no real side effects if oxygen therapy is used properly.  See the following links:

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Google the following between the brackets and look at the number of Hits:

["Cluster Headache" Verapamil "Side Effects] - about 24,800
["Cluster Headache" Imitrex "Side Effects"] - about 21,700
["Cluster Headache" oxygen Therapy Inhalation "Side Effects"] - about 2,210

The raw numbers of hits are proof enough until you peruse a few of the hits in each of these Internet queries where you'll see the safety of oxygen therapy over the other invasive medications is even greater.  In general, Verapamil and Imitrex have several potentially harmful side effects where oxygen therapy is virtually free of side effects.  

Yes there is a side effect of oxygen therapy called pulmonary oxygen toxicity, but you would need to breathe 100% oxygen continuously for 12 hours without breathing normal air for the symptoms of this condition to appear.  Even then, these symptoms clear rapidly with no lasting effects by breathing normal air.  

Moreover, at a flow rate of 8 liters/minute, 12 hours of constant would require 2 full M-size or 11 E-size oxygen cylinders ganged to a single manifold.  The risk of pulmonary oxygen toxicity after 15 to 20 minutes of oxygen therapy is extremely low to non-existent.

Oxygen therapy is the least expensive abortive at around $1.50 per abort and as the Google queries above illustrate, there are no real or lasting side effects save for an occasional dry mouth or nose when it's used to abort cluster headache attacks.

Inhalation of 100% oxygen is so safe Navy and Marine Corps pilots flying $30 Million dollar tactical jet aircraft are required to breathe 100% oxygen on all flights from takeoff to touch down.  The average mission length for these flights is over 2 hours and speaking from experience, the flow rates are well above 15 liters/minute.  

Navy and Marine Corps pilots have been breathing 100% oxygen in tactical aircraft for over 60 years and the number of pilots over that time comes to several hundred thousand.  There are no documented cases of any health problems attributed to breathing 100% oxygen and these aviators all receive annual flight physical examinations.  That's kind of like the largest open label clinical study in history...

The way I see it Cluster Headache sufferers here in the US have an implied Patient's Bill of Rights.  These include the right to ask and receive answers to the following questions from your primary care physician or neurologist if you've been diagnosed with episodic or chronic cluster headaches:

1.  How many cluster headache sufferers have you treated?
2.  How many cluster headache sufferers have you treated in the last year?
3.  What are the most effective preventative medications you prescribe for cluster headaches?  What are the side effects of these preventative medications?
4.  What are the most effective abortive medications you prescribe for cluster headaches? What are the side effects of these abortive medications?
3.  Do you prescribe oxygen therapy as an abortive for cluster headaches? What are the potential side effects? (You should already know the answer.)  

Note: In countries practicing socialized medicine like Sweden, your neurologist can suggest oxygen therapy, but you'll need to see a pulmonologist for the prescription... watch out for universal healthcare...  it's going to be just as bad...
4.  If your physician or neurologist refuses to prescribe oxygen therapy as an abortive for cluster headaches, ask for the rationale.

Remember...  One way or another, you're paying for the medical care the physician is providing, the medications, and it's your body.  Be polite, but also share your concerns over potentially harmful side effects of any medication. If the responses to the questions above sound reasonable you may be able to work out a prescription for the oxygen therapy.

Take care,

V/R, Batch

i take 360mg twice a day of verapamil, and i drink 1 or two monsters a day and i have found no side effects from the two

i have a script for treximet but i know it doesnt work quick enough, ive tried all the pills none help me, perhaps at the very first sign of the attack but i dont like to take the chance i stick with 02 imitrex injections and steroids