I'm venting so bare with me.  I have a hubby that is recouping from surgery and he is doing the best he can with not being allow to walk for at least a month and is on a CMC machine 6 hrs a day.

I'm settling into my pattern which seems to be around 2-3 PM and around 8-9 PM and it seems to be around 3-4 AM.  So far I have been able to keep up with them but I seem to have shadows all day.  I'm not sleeping real well and I'm going nuts stuck in the house.  Poor hubby is also going nuts.

I called and asked the O2 company since I will be getting another "H" tank tomorrow would they bring me 2 "E" tanks so that at least I could get out of the house and not worry so much about doing the drugs since I would be the one that has to drive if we go anywhere.

HERE'S THE MORON PART.....They told me that E tanks won't work for me because I have Clusters and they don't want to run back and forth refilling them.  I said "Look just bring me 2 so I can get out of the house and if I run out before you bring me my "H" tank I won't go out". That's a once a week delivery.  I am only using them when I go out I'm not depending on them for all attacks.  Now is it me or do people just don't get it! She said that I would only have 15 minutes. I told her great that's all I need.  If I could strap this H tank on my back I swear I would do it!

I must of laid down too fast after the last hit because now I have a sinus infection and I can't take anything for it.  Head feels clogged.  Nose is stuffy and I have pressure.  Is this when the train hits ya!

I just ordered a regulator for the "E" tank and now to find a place that 1. I can buy a tank (that doesn't seem to be the problem 2. Find someone that will fill it.  I've called a couple of places and if it's not their tank they won't fill it.  So now I wait to see if the O2 place will give me the tanks or I have to go buy them.  Either way I gotta get out of the house or I'm going to murder someone!

If there were no morons, you couldn't feel superior to them. ;)

Regardless of the source of the limitation--work, school, travel, etc.--it's an argument for having another abortive to use at such times.

This is one the reasons I've regularly suggested trying zyprexa--one dose aborts an attack in 15-20 minutes.
----
Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.

Rozen TD.

Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

--------------------------------------------------------------------------------

Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.

They are such liars!!  I used to use E tanks all the time with a wheel cart so I could pull it around behind me and take it wherever I went so I had  100% access. 

All I use are E-Tanks, I keep an 8-pack in my garage....sigh.........the frustration of it all. >:(

Joe

Bob Johnson wrote on Jan 17^th, 2011 at 9:16pm:

Regardless of the source of the limitation--work, school, travel, etc.--it's an argument for having another abortive to use at such times. This is one the reasons I've regularly suggested trying zyprexa--one dose aborts an attack in 15-20 minutes. ---- Headache 2001 Sep;41(8):813-6  Olanzapine as an Abortive Agent for Cluster Headache. Rozen TD. Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa. OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE. PMID 11576207 PubMed -------------------------------------------------------------------------------- Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.

Hi Bob,  I knew nothing about this and will look into this further.  I see that the study was done at Jeff which means my old Neuro must of been involved with this.  That would have been Dr. Silberstein.  I don't have fond memories of him since I went to him for a couple of years and when I got pregnant he refused to treat me or even help my OB take me through a pregnancy.  His words to my OB was I told her not to have children.  He's not well liked in the medical community but he is good at what he does.  He had put me in the hospital for a week with DHE 45 treatments.

I have been on everything know to man kind up until 4 yrs ago.  What the drug is used for and how it's used off label doesn't bother me a bit.  They can even call me crazy if they want as long as I'm PF. :P

Guiseppi wrote on Jan 17^th, 2011 at 10:32pm:

All I use are E-Tanks, I keep an 8-pack in my garage....sigh.........the frustration of it all. >:( Joe

Joe do you know how much time you have with and E tank if your using it for 15 minutes at 15 LPM?  Just so I don't sound like a nut when I fight with them.  I would love to go out on Sat and I will be going to Delaware which is an hr drive and I would love the security of having this on hand if I need it.  I figured I would get at least 3 uses out of the E tank.

Karla,  I'd like to hit them with the tank if I could. 

Sami

Does anyone use DHE 45 anymore?  I use to break the vial and get two shots out of one vial.  I don't see anyone talk about this anymore.

My problem is in the 30 some years that I have had Clusters we have never found a preventive that worked for me.  I have been on so many drugs from Lithium to 800 mgs of Calan to Inderal Sansert Cafagot Amerge, seizer  meds so on.  DHE 45 is what Dr. Silberstein put me on and had me use this as both the preventive and abortive.  Then I would have the Botox and nerve blocks which never worked.  I wished I would have kept a journal of all the drugs I have been on for this.   

The last couple of years we would use Imitrex 100 mgs a bedtime with Klonopin for the night time hits then the nasal or pills during the day with O2.  With the O2 the hits are more controlled.

Sami

Guiseppi wrote on Jan 17^th, 2011 at 10:32pm:

All I use are E-Tanks, I keep an 8-pack in my garage....sigh.........the frustration of it all. >:( Joe

me too


I've never used the injections but have used Migranol which is DHE45 nasal spray. It did't abort but did seem to have preventative qualities.

I'll also back up what Bob posted regarding Zyprexa. It worked as quick as imitrex for me.

good luck

I always had an H tank next to the bed and an E tank at work and one in the cruiser. The company I got mine from never had a problem giving me what I wanted.

They ARE morons.

Sam,

   E-tanks are necessary so you can be mobile.  If I can get to mine right away with the first twinge I feel I can abort in less than 10 mins.  An E-tank can last me through 3 to 4 HA's.   

Please call the morons back...ask to speak to the manager or supervisor and explain exactly that.  Don't get angry.  A few well placed tears might not hurt.  ;)

Joe's (Guiseppi) not home right now, but he uses a demand valve instead of a non-rebreather. I think he gets alot more time out of his e-tanks. 
He should be on in a couple hours and can answer.

By using a demand valve I use about 300-400 pounds each abort, which gives me as many as 5-8 aborts from each E-Tank. With lithium on board, and if I studiously avoid all triggers, I can cut my hits down to 5 a week or less. So the E-Tanks have always worked well for me.

Joe

I had the same discussion with my O2 supplier. He is the number cruncher there, but the delivery guys are great. They just say, screw him, and give me as many E tanks as I need at the time. As to the DHE 45, yes, at least one on the Board uses it, and I looked into its availability at one point when my Migranol Rx couldn't keep pace with my cycle. It is probably the same stuff you get intravenously (or one of the meds you get) at the ER. Dihydroergotamine. It worked for me as an IV. Have you found a source? lance

Thanks Everyone,  I did the blonde well placed cry routine which wasn't that far from the truth since I have really not be out with friends in over two weeks.  Been house bound due to the H/A's and Hubby on crutches and this dam snow and ice.

I finally got them to give me 3 "E" tanks but they told me they would only give that to me every month.  That's OK for now.  So far each delivery guy that has come has left with homemade cookies in a bag.  Hopefully this will help in the long run.

I should get them today so maybe if we don't get this dam snow that once again we are to get on Friday I can get out of here.  I swear I have such a bad case of cabin fever and hubby too I will throw him over my shoulder and walk him to the truck.

Love ya all,
Sami

Well that's a good start! It's just a shame it takes so damned much work to convince people you know more about CH then the damned warehouse foreman. The cookies....great move! ;)

Joe

You catch more flies with honey than you do with vinegar.

3 a month!?!?  Wow, I'd be looking for another supplier.

When in cycle I often get hit twice a day at work.  I get two aborts out of an e-tank at 15 or 25lpm.  (25lpm works quicker).  So I'm bringing in a fresh tank every morning and taking home an empty every night.

My supplier keeps a farm of 8 tanks at my house which get me one delivery a week.  When I'm home I rely on my m-tank.

Good luck...

-Dennis-

Cookies worked....LOL  The guy (I have had a different one each time 4 so far) brought the two tanks I must of looked a bit worried and said I thought they would give me 3, he said no problem I have extra how many would you like.  I said can I have 5 he said sure no problem.  Out the door with more cookies....LOL

I'm getting hits a couple times a day.  I think I'm doing something wrong so I will check out the oxygen info.  I use it but I may be getting off of it too soon because I get another within an hour or two. 

Right now I seem to be getting them first thing in the morning somewhere around 1-3 and again around 8-10  each of these times I use the O2 and take meds.  I'm doing something wrong I know it.  You think I would be a veteran by now :-[

Remember, O2 is an abortive, not a preventative. It only aborts the current attack.

I have the same problem with the come backer attacks. I now drink an energy drink, I prefer the sugar free red bull for taste. When I fire off the 02, my wife, (worlds greatest supporter) :) pours me one "on the rocks!" 02 aborts the attack, the red bull seems to push off the come backer for several hours. Might be worth a shot to stretch out the 02 a bit.

Joe