I'm in the desperate throes of pain and depression of yet another Cluster cycle, coming less than a month after the last one.

I thought I had a good Neuro but turns out that both she and her secretary are acting grossly negligent. 

I went to the ER last week, as suggested by the dr, to get O2 during an attack.  It worked well. I called the dr's office after the weekend and asked for her to submit the Rx for the tank.

the complicated story that ensued would have given anyone a migraine level headache in dealing with this. I had to have a friend take control of the situation because I was in agony and sleep deprived and couldn't speak.
(Meanwhile, I'm taking Indocin when the headaches get to level 8 and above).

Over a week has passed, I can't get the Neuro to call me and I still don't have my O2 tank because the secretary can't seem to fax in the proper information. 
They originally sent an Rx for just a mask.  I had to come to this website to get all the oxygen tank info (flow rates, regulators, etc) and tell the dr what to prescribe!!

I've expressed the urgency with which they need to address this and it falls on deaf ears.   

I cursed them both last night during an attack that woke me from my sleep.

Clearly I need a new neurologist here in NYC.  does anyone have any recommendations??

I'm so tired and now so angry and frustrated.  It's hard enough to keep your spirits up during these nightmare cycles and this is just making the hell even worse.

I'm doing my best to fight and not give up.  I hate this.

But I love you guys.
Shuli

Have you tried some of the simple stuff suggested here?
Energy drinks at the first sign of a HA.
Melatonin before bed.

I got a tank from local welding shop.
A mask from our online store here.
A regulator from ebay.
All within 2 1/2 days.

Suggest to your doctor a preventive like Verapamil and an abortive like Imitrex.

Good Luck,you can vent here it's OK.

Thank you both so so much!

I did find a welding supply shop not too far from me (luckily I live in an area with some grit and pulse left to it!). 

I kept calling the secretary and she said she faxed over the info to the o2 supply people. I think my insurance will cover it so I'll go that route first.  but otherwise, I'm happy to know there is a plan B.  already eases some of the frustration.

And yes! I'm off to buy melatonin today.  9mg? I read that somewhere on one of the left-hand links here.

Oh, I did try red bull and it does seem to push the pain off for a while.  I haven't taken it at night because I'm afraid to stay up all night. but I guess I do anyway with the pain, so it's worth a shot.

One more note: I have Imitrex nasal spray.  But I don't think I can take it while using Indocin.  and I don't know how long I have to wait to make sure the two don't interact. 

Sorry I think I posted at the same time you were--so glad to hear that they faxed the prescription in.  Make sure they give you a nonrebreather mask, cause otherwise I have found the O2 doesn't work.

my husband used 9mg, but Katie used 25mg, and many folks are somewhere in between on the Melatonin. So you might have to experiment a little with the dosing. Good luck!

And the Imitrex nasal spray worked well and really quickly for my husband, but we tried to really minimize it's use since some have said it causes rebound headaches and can extend the length of the cycle.

What about Batch's PH formula?

Dont forget sometimes the Melatonin can take a couple days, BUT many have had success with it the first night.

Prayers and good luck.

you owe it to yourself to get an appointment with dr sheftell @ nech in stamford!!!!
he's a gem and literally wrote the book .
i live on long island but will always be a queens boy at heart....if you need anything drop me a pm and  I will ensure that you get whatever you may need  you're only 30+ away.

no need to be in pain!!! call nech on monday 12039681799 it's only 30+ from manhattan at least from uptown.... you can tell them eric diamond referred you.

drop me a line if needed.
please forgive the lowercases...i'm on my blackberry and it's just easier

pf times and breathe

eric

@bejeeber - I couldn't agree more.  the only helpful thing is that it allows me to funnel my rage during an attack at someone instead of invisible entities or myself.

Eric - thank you!  I did make an appointment with a neurologist in town - who came very highly recommended by someone I trust and attests to her compassion.  I'll give it a shot.  If not - I'm off to CT. 
It's relieving to know there are more options - and that there's a fellow CH'er nearby!

Shuli wrote on Dec 5^th, 2010 at 12:31am:


I'll drive you!!! Don't waste time

good luck

Shuli,

Find a time to get together with Eric.  I've not had the pleasure of meeting him in person yet, but I definitely want to.  He has been a real friend here on the board.

Meeting another clusterhead in person can be very liberating.  Just knowing you are not alone is GREAT therapy.  Knowing it form being on here helps, but when you meet them in the flesh it is just different.  It also helps to have met some others when you are reading posts.  We are not able to put body language and vocal inflection in our posts, but having met others it helps to insert it in your mind when you read posts.  I found after having met my first CHeads I understood posts much more easily and wan't offended by the brevity of some posts.  (That isn't aimed at you, but is meant for general consumption.)

If at all possible, St Louis in Jan is a beautiful place. (NOT)  However, we do have a great weekend getting together.  It is life-changing.

Jerry

Shuli wrote on Dec 6^th, 2010 at 6:27pm:

You will find the info here:Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Come join us..... 

Thanks!  I just might come out and meet you guys!!

The Doctor Game I call it, been there and done that. I have found, thanks to this site, that I know more about CH than a headache specialist I've seen. (PHD) A Doctor that'll work with what you know, is a great thing.

I know I don't have to tell you. You're well on your way to better times.

Don