John

The price I was quoted for the 2 M tanks and reg was $126/month. The guy that dropped the concentrator off said that it was the same price to lease. I have to pay out of pocket until my $1000 deductible is met. Then it's covered 100% by ins. Until I hit that deductible, they aren't paying anything. I understand where you all are coming from, and appreciate the advice. In the long run, I think it might still be worthwhile to see how much I can lease a tank from a weld supply co for. What about this regulator? Up to 40 LPM... http://www.harborfreight.com/regulator-gauge-94841.html

GP wrote the order for 7-10LPM o2 as needed. The built in regulator goes up to 10LPM. When the supplier called me @ work and set up the delivery, I was told I was getting 2 M tanks, Regulator and a mask(which is what the lady told me they usually do for CH patients). So you can imagine my surprise when he pulled the machine out and brought it in. "It's more convenient." The mask they sent is just a plain mouth/nose mask. My heart sank a little. But I have an app't 4/4 with a neuro. Hoping he can change the order to higher flow @100% if this doesn't work. Seeds showed up today, and licorice tincture shipped out today. Â

They brought a machine instead of tanks? :-?

Doc called in the order for the o2. Gotta pay out of pocket til my deductible is met, but a small price to pay for relief. I also got my seeds in the mail, but I caved and took a trex at work today...so back to detoxing. Order was for 2 M tanks,regulator, and mask! ;D

Guess I overpaid.... :-[

I think people put up with it because we feel we have to. But everyone has that line. I never pushed for the o2, because the trex worked for me, with no real adverse side effects. Until now. If you have something that works without ruining your day, you don't push for anything else. At least, that is true for me. But as soon as something stops working, or causes me problems, it's time to push for something else. I'm tired of taking scripted meds, so I'm going the busting route. I want to be in control again.

http://www.hannasherbshop.com/shop/product/2391 This is where I ordered mine from. Ingredients: Licorice root extract (1:5) in alcohol (50%) and distilled water. 38 drops equals 450 mg. $7.95/oz (seemed a very fair price to me) Ordered on Monday 7th. Got order confirmation, but no shipping confirmation. Will keep posted. IAMSHAMAN order has already shipped out and is en route.

I am still awaiting the arrival of the licorice root. Early next week, I think? I did get a skullcap mixture from the local homeopath that I've used before. I'm not entirely sure what all is in it though. On the label, he wrote- Fever/skull/col nut He also gave me NAG(N-Acetyl Glucosamine) for the pain from the Trex. As of yesterday @ 10:30'ish, I've been off all meds(except for Omeprazole for acid reflux/GERD.Last one of those I took was last night @ 6:30. I've taken 5 doses of the skullcap mixture total. 2 of which were today. When I woke up, my 2 heavy shadows were down to just a light shadow on the left side. My right has been clear all day long(so far). And I've only gotten a few pokes on the left but they were only for a few seconds. Monday @ the GP's, my BP was 143/80, up from 132/80 on Sunday night, but it always goes up in cycle and during a hit. I called the GP to push her on the o2 script. Talked to her nurse twice, and never got a call back before I left work@ 5. 1st time, she said the rebound HAs and coma feeling was from a script that I never got. She mentioned it at the appt, but never called it in(phenal-something or other) to the pharmacy. I told the nurse that I didn't get that, and she said a neuro would call me for an app't(same neuro that misdiagnosed a cyst on my mom's brain(which I've already had an MRI to check for)few years ago. 2nd time I talked to her she said the doc wanted me on a pred taper to bust the cycle. I told her that pred didn't work the other 3 times she tried it, and that my stomach wouldn't handle it(since it's all screwed up from the trex still, and energy drinks from yesterday). I told her that I need a way to ABORT. Soonest I could get in to see a HA spec is Apr 28th, so an abortive was imperative. I told the nurse to ask about the o2, since we discussed it at the appt. The nurse tells me Uh, I don't know about that. She's never rx'd it since I've been here. So I say I don't think she treats anyone else with CH. Oh yea, we have alot of patients with that. Well, with headaches, and none of them needed oxygen. So I reminded her that I do NOT suffer from Migraine, but CH. Well, I'll have to go ask her about that again then. Hopefully I can get back to you sooner. I first called @ 9:30, got the first call back @ 1:00, and the second callback @4:00. So, yeah, she's fired. Looking for new GP tomorrow, whether she comes through with o2 script or not. I don't have to deal with retards in order to get the right treatment. So, when I called Neuro Care in Canton, OH, I ask if they treat patients with CH. Yes, we treat a lot of HA's. But do you treat for CH? Uh, sure. We can treat you. Now, I understand the people who make the app't aren't dr's, but I think they should sound a bit more encouraging than that. Kicker is, I don't NEED a specialist, or a neuro. Just a doc that will listen and help out-not withhold from me.

Been asking myself this all day long.

We'll start with calling the ins co to see if they do or don't cover o2 therapy for clusters. If they do, I'll put a call in to my idiot GP for the script. If they don't, I'll make the trip this weekend to get an o2 tank/reg and order the optimask.

Where do you fill your tank though? Through the same welding supply shop that leases it? Around here, there is only 1 place that leases the tanks, and they lease them to ALL of the shops around town here. Not even sure how to go about that. Could try to call them and see if they'll lease just 1 tank out.

You're not missing anything. She left me high and dry to either take the trex, which only knocks the HA down a peg or two, and is now causing me severe muscle fatigue and joint pain as well as nausea, or topamax-which I did take the prescribed 1/2 pill last night and it almost knocked me out and did absolutely nothing for the HA's that I had.

Working on finding BOTH a new GP family doc, and a HA specialist. I'm not sure if what I am getting hit with right now is rebound HA, or what, but I am not taking another topamax. Ever. Shadows started at 10am yesterday. Then into a k6 by 11, took my usual 1 treximet, which only knocked it back down to a heavy shadow, then the right side started. It has not stopped. About 2:30pm today, I had a shadow on the left, and a k6 on the right-first one this cycle. It felt like an explosion traveling through my head-into the left and out the right. Now I'm at about a k2/3 on both sides with the same pulsating explosion feeling. I even called our local medical supply store to see if I could buy the o2 setup out of pocket, but was also shot down there because "oxygen is a drug, and you need a prescription for it." I did discuss getting o2 from a weld supply shop with the GP yesterday, but she advised against it...thoughts on that? As far as the specialist goes, my options are NeuroCare in Canton, Oh, or the Cleveland Clinic. But, they only have 1 neurologist there. The others are pain management-which from past experience, pain management docs aren't the way to go with CH. Got confirmation email that my seeds have shipped today...so IL to OH...hopefully by Friday!

One of the things Les says in that summary in the Clusterbuster files is that he's not sure about combining licorice and seeds, at least not, as I take it, with both at full dosing strength (http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068, under "Busting and Licorice'). As I recall it, he suggests trying the tincture first, and if it doesn't work, going with seeds the next day since the licorice is out of your system by then. (This itself is interesting to me and not entirely clear, because it suggests that the licorice root would act almost instantly and you'd know that quickly whether you wanted to keep taking it, whereas RC takes multiple doses and often results in severe post-dose hits.) Maybe that's what you intend--having two options; or maybe using RC to bust and licorice to abort--but I thought I'd mention this. On the other hand, it seems that at least one person (dblu) had good success combining RC and licorice root (http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1296960364/0#0) Or maybe, since I only know what I read and am only trying to alert you to what might be a potential "misuse," you might post a question to Les at his thread if you're uncertain: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1293084254/150 I plan on trying the seeds 1st, until I can get my bp under control. But I wanted to get it so I had it, since no one had it locally.

Yes, WTF was my reaction. Her words were let's try this(topomax) and in 3 weeks if you're not better, we'll try to push for o2 then. The only reason I made the app't was to get o2 to abort. And I told her that. So we had a 40 minute discussion about o2, lsd(I printed the BOL info),the licorice root/skullcap, and a few other things. And it ended with her telling me that she doubted my insurance would cover it. I'm tired of it. I can't take the pills anymore, and I sure as hell can't take the pain. Woke up with a heavy shadow on the left, and the same dull throb on the right. That makes it the longest one yet this cycle.

Ordered 200 RC seeds from iamshaman.com, and licorice root tincture/vit d3 from hannasherbs. Now, I just gotta make it till then(and detox).

So, had an app't with my GP today, and hit up my homeopath for the licorice root/skullcap tinctures on the way. No licorice root in stock except for pill form-but he is making a skullcap mix for me to pick up tomorrow... Then off to my GP to ask for o2...again. Shot down again. Even AFTER she admitted to knowing that is is 98% effective in aborting an attack. Instead, I left with a script for topamax and no abortive. Thought I'd try 1/2 one tonight as prescribed and see if it got rid of my shadows(now on BOTH sides). Well, I took it @6:30 with dinner, and by 7:45, I'm half passed out on the couch(and I'm supposed to take 1/2 pill in the AM too), and now, at 8:52, getting hit with a runaway k7. Already took the daily treximet @ 10:30 this morning for a hit at work. And I'm done with the trex due to extreme muscle fatigue/pain and stomach pain/nausea. So now what the hell do they expect me to do?

Yes yes yes. Doesn`t always have to be the rain, i often joke about i`m allergic to sunny nice weather. Easy with trex i would say, it loose it`s effect if you use it that much. In my experience at least. I'm thinking the same here. It now takes 45min to and hour to knock it down to bearable anymore. Printed out the info about the o2 to take to dr tomorrow, and I found the licorice root/skullcap post that I'm going to talk to my homeopath dr about also. Guess I'm just reluctant to try the hallucinogenic route since that was one thing I've never tried. If it comes down to it, I'll go with the RC seeds first. Planned on trying them last year, but the Trex knocked them out before I really committed to doing it.

I've wondered about that,but the first 2 hits this cycle were after the temp hit 40-45* and were dry days. But the others have came on rainy days...Something else to track in my HA journal. I also notice that I get a lump in my left temple during/after a hit. Have to keep tabs on that when I'm PF also.

I had tried to get o2 last year but my neuro gave me a Treximet and it worked within 5-10min in his office, so we just went with it. This time, is is only working about half-if that. Here it is 4AM, and I am hit yet again with another K8. So I'm sitting here with the music blasting in my headphones waiting for the Trex and Monster to knock it down or out. Thanks for the links for the o2! I was planning on taking info in on the o2 treatment. I was also debating on discussing busting as well, but that might be something for down the road...since I'll have a new doc. Also, the Treximet or the HA are what's making me nauseous. I've never taken the Trex this often. Usually, when I took one I was good for at least a week.

HA log- 2/22 k5(normal) lasting 45min. 1 treximet 3/2 k9(new pain)lasting 2.5hrs. 1 treximet 3/3 k8(new pain)lasting 30min. 1 treximet 3/4 k7(new pain)lasting 1hr. 1 treximet. puked 1 hr after meds. Light shadow now. 3/6 k8(new pain)lasting 46min. 1 treximet. Dr appt Monday @ 4 to ask for o2 and referral.

Well, the beast has changed once again. Last cycle(Feb-May) it was switch hitting. My normal side is my left side. Until last spring, then it started out normal, and then went to the right side-and stayed until it was over. Now, this year it's back on my left side, but it starts differently. Instead of starting inside of my head behind my eye and temple, it is starting in the skin above my temple and then radiating in on the ENTIRE left side of my head. Usually if I put pressure on my head it numbs the top of my skull and 'seems' to alleviate the pain enough to make it bearable. This time, I can't touch the left side of my head at all. It feels like I just got hit with a hammer and bruised instantly. Calling the doc tomorrow to set up an appt so I can get a script for o2 and a referral to a neurologist since my regular neuro retired. Taking Treximet currently, and in 2 weeks, I've taken 3 pills already. First one was last Tuesday @ ~12:30PM, second was yesterday, and then hit again tonight @ 9:00PM. Luckily, I caught it in time and it got cut short. Hit a K8 for almost 30 minutes...much better than last nights killer 9 for 2.5 hours. Another change is that I have gotten nauseous with the last 2 hits. I don't know if I'm weakening and can't handle the pain like I could, or if it's a new symptom, or something else. Tonight I felt sick after I took the Trex, but last night I was nauseous before the pill-so I think I can rule it out.

Well, it looks like my next cycle has begun with a vengeance. It's been a year since my last one, so I consider myself lucky. Which actually brings me to a question... Does anyone else get hits when the weather changes-like an allergy? This is the second year in a row that I've gotten hit as soon as the weather breaks from winter to spring. And last year I skipped my typical fall cycle-somehow. Anyhow, I've got a lot of reading to catch up on... :'(

I've been away because once my cycle ends, I really don't want to think about it at all...but, as I sit here working through the end(I hope!)of a K9 that came on around 4:15 so suddenly that my head spun, I got my reminder why I came here in the first place. I have yet to get my hands on anything to try, but am planning to do so in the VERY near future. All I wanted to do today is come home from work and die. It is now 6:27, and I can finally function for the most part. I will start my own post asking for advice again, and to log my progress, and hopefully success. Thanks for still being here!

Episodic clusterhead here(almost 8 years). I have been reading a TON here, and have a couple questions...but first- My 1st bout with CH landed me fighting alone. My doc prescribed Vicodin and told me to keep taking OTC stuff(I tried it all and ate it like candy-tylenol,advil, aleve, excedrine) and offered a shot in my temple that I refused. Nothing worked. My boss at work hooked me up with his homeopathic dr who gave me 2 bottles of drops(Pleo UT and Pleo San Ger). After about 2 weeks, the headaches were gone. At the time I didn't know if the drops worked, or if the cycle was over, so I tried it the next spring when they came back, and a week later, they were gone again. I would get only shadows instead of full blown attacks. I thought I had the hot setup, and life went on. Until now. My usual no longer works, so I went to a new GP who gave me imitrex(pills). I took all 9 imitrex in a week and had rebound HA's straight from hell. 3 nights of k10's that I thought would rip my head open. So I went back to the doc who gave me prednisone and a referral to a neuro. Got lucky and neuro had a cancellation 2 days later and he gave me trixamet. Which has been working well-mostly. I still get heavy shadows, and for the last few days this monster has been changing(maybe due to the trixamet I believe). I'm actually getting 2 different HA's on both sides of my head. My usual side is left. I'm getting hit by a k3-4 on the left, and getting shadows on my right. I was beginning to think that this cycle was winding down, but it's not giving up yet. I go back to neuro on Jan 6th and intend on asking for o2, as I haven't been able to get an rx for it. And I'm also leaning towards a batch of RC seeds from iamshaman(200). I'm ready to kick this thing. I'm actively searching for other busting tools, but haven't found anything yet. If the seeds don't work, I may attempt farming, but we'll cross that bridge later. I know I wrote a book already, but I do have a question about the BOL and fda approval- Since the FDA doesn't regulate the homeopathic meds, would there be a possibility of going that route?