My appt today went great. I lucked out with this doctor for sure!

My cycle started Dec 19th and they usually last 3 to 6 weeks. It is coming up on six weeks so I am praying it is coming to an end.

So for now, I am still on a pred taper. I have had a few attacks but they are very short. I have been taking an imtrex pill right when I wake up because I am scared to get a full blown attack. This doc told me to finish my pred taper and stop taking imitrex pills...we need to know if the cycle is ending or not.

He wrote me a prescription for oxygen with a NRB mask and Sumavel injections. He also gave me three sample sumavel injections. If my cycle ends soon thats great. If not he said he usually starts people on a steroid injection and some verapamil. He seems really up to date on treatments.

The doc said CH is usually seen in men with long faces and a "strong" jaw. He went to a CH conference where he saw picture after picture of CH men during an attack...he said it was wierd how they all had these features.

The Sumavel injections are needleless...6mg. Do you guys have any experience with these?

Anyway, I now feel like I have some REAL help to deal with the beast. Thank you all for being here....You all helped me so much this year!!!

Sounds like the doc has you squared away. Glad for that. The sumatriptan injections are much quicker and more effective than the pills. Similar to the pills it is an abortive not a prevent. Dont use them to keep the HA away. Use the 02 to keep the HA away. You cannot take more than 2 in a 24 hour period and never never mix triptans. Use the injectors when you have to but be aware they often cause rebound headaches.The 02 is the best thing he give you. It is a godsend.START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 

Hi Kiri,
Good that you got in to your appt and were pleased with the visit.  Many CH'ers find it challenging to get a doc to properly diagnose and once diagnosed many have difficulty getting a doc to prescribe o2. 

What o2 flow rate did he prescribe?  Ideally 15 lpm or higher to properly abort using the hyperventilating technique with the NRB mask.

The stereotype of mostly men afflicted by CH's is only because women have been misdiagnosed more than men.  Now women are catching up with the men in terms of proper diagnosis because docs are becoming educated about our very rare disease.  Additionally, the stereotype of physical features is debatable bullshit hype.  I think he mentioned these stereotypes only to comfort you that he knows a little bit about CH's, which is a good thing, to comfort the patient.

Imitrex pills generally take too long to abort attacks, while  injections and nasal sprays are preferred triptan meds.  Triptans are not preventive meds and should not be used as such.

Pred tapers are helpful for many of us, but really should only be started as transitional treatment while a preventive med such as Verapamil is building up in your body to therapeutic blood levels, often two weeks for Verapamil.

I question why a doc would prescribe Prednisone without starting a preventive med at the same time.

Nice of the doc to give you Sumavel inj samples. 

Do lots of reading here from this website and your gained knowledge will be priceless for your treatment. 

If you feel that strongly about this doc being fabulous, you might consider requesting OUCH to add him to the recommended list of doctors.  OUCH website (yellow tab) found on left side of your screen.

Good luck with your treatment, ask questions, vent as needed, read and learn, you are not alone, we are here for your support, keep us posted, PF wishes to you ;)

-Gregg in Las Vegas

Thanks bb and Gregg for the replies,

Gregg...I got prednisone from a GP while waiting for this appt for the HA specialist. This GP would only give me pred and imitrex. So I was already on the pred for a week before this appt.
I noticed tonight that the specialist only wrote the oxygen for 8 lpm. I am suprised because he spoke about high flow rate oxygen and a NRB mask. Im sure I can get it changed.

I declined verap for now because my cycle should be ending soon but he did offer. He said if I need to I can call him, tell them its an emergency, and get in to see him pretty fast.

He did seem good and willing to listen.  I will recomend him on the Ouch site...if he ups the oxygen! lol PFDAN to ya all!

Kiri wrote on Feb 1^st, 2012 at 3:38am:

T I noticed tonight that the specialist only wrote the oxygen for 8 lpm. I am suprised because he spoke about high flow rate oxygen and a NRB mask. Im sure I can get it changed. I will recomend him on the Ouch site...if he ups the oxygen! lol PFDAN to ya all!

Provided you get a regulator capable of 15 lpm (or preferrably up to 25 lpm) it really shouldn't matter what flow rate the Dr has suggested. Just experiment to find the flow rate that works for you. Unless the 'oxygen police' happen to frequent your neighbourhood!!  ;)

Hi Kiri,
Well that makes sense now about the Pred treatment.  Are you that confortable with your knowledge of personal history to take a gamble and wait on starting a prventive med?  If so, kudos to you.  After 32 yrs of suffering CH's, i've learned not to take that gamble and try to get on something ASAP.

Again, the Verap will take up to 2 weeks before you even notice help (reduction of attacks and reduction of intensity pain) and even after 2 weeks, one must usually increase dosages.  See a thread titled "Verapamil Dosage" under the Medications/Treatments board for most current treatment regimen.

As for the o2 script, 8 lpm is commonly prescribed because unfortunately doctors have no neurological literature supporting high flow o2 to prescribe required high flow rates.  All they have documented is studies of low flow rates, so that is all they prescribe. 

O2 therapy using high flow rates has been tested in clinical trials, etc and is currently in the process of receiving the "Gold Standard Approval" from the neurological community.  Until then, it will commonly be low flow rates prescribed and this requires you, the CH'er, to be a self advocate and think outside the box by getting your own regulator. 

Low flow rates are a living nightmare during an attack and often a CH'er will give up stating o2 does not work.  It does work!  O2 works awesome!  But only at high flow rates that support hyperventilation.  Hyperventilation requires flow rates of 25 lpm to 40 lpm. 

You could always get a welders o2 regulator from Harbor Freight or order a medical o2 regulator from Flotec, etc.  These will fit on your o2 large M size tank and adjust flow rates to support hyperventilation.

The NRB (Non-ReBreather) mask is absolutely essential and can be purchased off this website.  See the yellow tab-left side of your screen-titled ch.com store cost about $28 bucks.

Good Luck! ;)

-Gregg in Las Vegas

I'm thinking when a doc prescribes a flow rate, it is the regulator that is being addressed. I wonder if the O2 company from whom you get the tanks and stuff will give you something that does go higher? If not, you do have the option of putting your own on the tank as has been suggested. If cost is a factor perhaps you can convince your doc to prescribe a higher rate so it wil be supplied with your tanks. Blessings. lance

Thanks for all the help guys,

Yeah Gregg, I have never had a cycle lasting longer than six weeks. So I am taking a gamble. I just hate being on meds. I do feel like the cycle is getting weaker. I had no attacks yesterday but had to use an imitrex injection this morning. Shit.
Those needleless injections hurt more than the ones with a needle by the way.
Im working tomorrow (hospital RN) so Im gonna grab a NRB mask and try some O2 there if I need to. I have a note from my doc saying that its ok and a damn script so they better let me.
I just don't even want to entertain the thought that the cycle wont be over soon. Im expecting it to end this weekend.
Money isnt too big of an issue so I think I will be fine setting up the oxygen properly. My plan is to see how the weekend goes....wish me luck...

Good Luck ;)

-Gregg in Las Vegas

I love good news....way to go.
stay at it and good luck
the bb

I just don't even want to entertain the thought that the cycle wont be over soon. Im expecting it to end this weekend

Always expect the best....but plan for the worst! ;) Sounds like you have your battle plan all lined up and ready, that's great news.

Joe

Kiri, I sense a little anger in your tone, and that's a great thing! And I also sense you are directing that anger toward battling the beast and not your own body. Even better! Such resolve is exactly what we try to encourage and it's really good seeing you take up arms against a truly horrid disease. Keep at it, and God bless. lance