b.g.

If you have a Horner's you would probably know it already. You can't hide from it .... and it can't hide from you. Extreme light sensitivity in one eye .... often a droopy eye lid ... one pupil will be perpetually smaller than the other .... and it will be very dry above said eye. It's a pretty simple diagnosis. Best regards, steve

Hi Ravyn. Welcome to the site! Sounds like you have received some good advice so far. With or without your insurance company covering you ..... get that script for o2 from your doctor. Where there is a will there is a way .... and o2 can quickly become your best friend. Again, WELCOME! Best regards, steve

I don't have a receding hairline, that's for sure The only other thing that I have is the Horner's and that kinda goes hand-in-hand with CH for a lot of people.

Have you been diagnosed with a Horner's Syndrome? I have. And my right eye (right side is CH side) is so sensitive to light that I cannot even begin to explain it. I can be in a totally dark bathroom with my eyes closed tightly and flick a lighter behind my back and its like a bullet to my right eye. Anyways, yes, I do get flashes from time to time in the right eye. I often wear an eye patch because of it. Those flashes are actually a form of a shadow for me personally. If my sensitivity level goes up, it's time to run for the o2 because the beast is lurking.

WOW, 2 years and I haven't heard a word about this wonderful service! Ya' learn something new every day I guess. I'll be calling them on the travel thing .... that could really come in handy. 8-)

WOW, holy crap Bejeeber. Maybe it does have something to do with the local reps then? That's some odd stuff right there? My Dr. purposely wrote my script for 7-17lpm because he already knows about the hassles that can go on "out in the real world" when it comes to o2. Bonus for me.... I know. That way if a regular 15lpm reg doesn't do it for me .... I have a script that allows for more..... which means the 25lpm model. Also, my script doesn't have any times/amounts on it at all? I have never been contacted by a person from my local store for anything ... ever? Sooo strange. Seems odd too ... being a larger city like Nashville I'm sure they have more than just a couple CH patients that they deal with and should know better? I definitely do not have the 7 day delivery system though. That's why I choose to drive the one hour to get my "E"'s filled myself. I can get them 7 days a week from 8am-6pm .... if I drive to get them myself. My "M" tank delivery day is on Thursdays and Thursdays only .... I have to call them before noon on Wednesday if I want my "M" swapped out that week - or wait until the following week. Have you considered asking your Dr. for a more detailed script? .... or actually I guess a LESS detailed script would be better I just pulled my script out and for "Associated Diagnosis" it says: Cluster Headache Horner's Syndrome Unspecified Asthma I don't have any kind of asthma ... specified or otherwise. I wonder if good ole Dr. Tepper just threw that on there to justify not having specific times/amounts per day or something? Regardless, I'm sorry to hear you had such a bad time with them. That's bad news right there. The ONLY thing I do not like about them is they use an overseas company to handle their billing ... so if you ever have a problem with receiving/paying a bill you have about a 1 in 10 chance at talking to someone who speaks good english but I do have a couple phone numbers for "higher ups" here in the states. If you want those numbers just let me know.... maybe talking to someone in the company besides the rude chick at your local facility can get something done for you? Best regards, steve

I haven't been posting much .... and I apologize for that, but I have seen more and more people talking about losing their insurance coverage for o2 for whatever reason (loss of insurance or insurance not covering o2 anymore), and the extremely high costs for using your local welder's supply store. I have been using Apria Healthcare for my o2 for a little over 2 years now and I will NEVER use another company. When I started on o2 my insurance covered it, and there was an Apria just a couple miles away from me. I rented all the equipment I could ever want from them for $2.80 a month and they refilled all my tanks as often as I needed for free. Just a flat $2.80/mo for everything. I have 8 "E" tanks, an "M" tank, 3 regulators, and a fistful of plastic handles and rubber o-rings .... still just $2.80/mo. I got divorced, moved out of state, and as of the first of the year I lost my medical insurance. I was scared to say the least. Anyways, to make a long story short, I now live in the northwest corner of Ohio. The closest Apria facility is an hour away and across the state line in Indiana. I just made my weekly drive over there this afternoon to have my 8 "E" tanks filled and while I was there I cornered the warehouse manager and threw a few questions by him. Come to find out, when I call to have my "M" tank exchanged, it doesn't come from that particular facility. Due to the laws and regulations, their drivers cannot cross state lines with tanks (I didn't ask why). SOOOOO..... when I have my "M" tank refilled it comes from an Apria facility in Dayton, OH. That's nearly a 3 hour drive from my house. Apria has 550 locations across the United States and will make EVERY EFFORT POSSIBLE to get your o2 to you no matter where you live. Even without insurance, my bill is a flat $18.80 per month. I still have 8"E"'s, 1 "M", 3 regulators, and a fistful of free parts whenever I need them ..... I still get all my air free. I can either drive for it, or have it delivered to me at no extra charge. I have been nothing but thrilled with the service I have received from Apria, and today I found out that they will deliver to you no matter where you live ..... even if you live 3 hours away (or more) from their nearest facility. Just wanted to share that little tidbit of information with those of you that have been having o2 woes lately for whatever reason. Just visit "Apria.com". In the upper right corner you can use the branch locator to find your nearest facility. Give them a call and see what they can do for you!! Wow .... after re-reading I sure sound like a paid spokesman I assure you I am not.

Hi Kristi, As far as the mask goes ... I have a few pointers. First, cut the strap off. You will find that holding the mask against your face will give you a much better seal than just the strap by itself. Also, falling asleep with the mask attached to your face and your air on (passing out from the pain) can be fatal. Once your blood gets over saturated with oxygen your brain tells your heart to stop pumping and thats not a good thing. Second, I recommend taping off the little breather holes on one side of the mask. When I used the regular non-rebreather mask I held it to my face and covered the non-taped holes with my thumb during inhalation. This just assures that you are getting PURE o2 and not a mixture of o2 and "regular air". You might even try taping off the holes on both sides until you get the hang of it. Before I got my demand valve and mouthpiece I actually found it better to just take the oxygen straight from the hose with no mask at all. Just pop the bare hose in your mouth, turn the o2 on, inhale until you feel like you are going to explode, and then flip the air off and hold in the o2 as long as you can. Exhale...... repeat. Just please cut that strap off the mask ..... please. I'm not a doctor, but your verapamil dosage seems low? I know it is different for all of us (depending on body weight and other factors) but I was up to 4-5 times more than you are taking at the height of my pharm days. Lastly, I am not real certain what you are asking about the Imitrex ..... but yes, you can take it if you need to. The presence of oxygen, or verapamil does not negate your ability to take the shot. Best of luck, and feel free to p.m. me if you have more questions. I don't look at the boards everyday, but if you p.m. me I will get a notification in my email and I do look at that every day. Best regards, steve

I'm still alive ..... barely I sneak in from time to time to see if there is any new "latest and greatest" info floating around. My apologies for not posting more often, but I just can't do it. I am not having a good time in life at all. I know the old saying "misery loves company" is probably true .... but I wouldn't bestow this misery on anybody .... fellow sufferer or not. I have tried everything within reason. I am exploring the occipital stimulation right now. I know that it has been awhile, and I apologize for not remembering exactly where I was at in the busting process last time I posted but I think I had eaten the seeds a couple times and was just starting to cultivate mushrooms. Long story short .... the seeds never really did much for me no matter how many I ate. I got more than one tummy ache, but that was about it. The shrooms were my #1 method in the past year. I had some great tips and I was successful in my first attempt (BRF cakes in a shotgun chamber). First strain was the basic "B+". I had a couple great flushes and I was off and running. The first time I ate, I was apprehensive to say the least and I only ate a couple grams. (I don't have my notes right in front of me so I will get my numbers as close as memory provides). I didn't have an attack while experiencing the mild effects of only a couple of grams, but I had one the next day. So I went a big stronger on round 2. I believe it was 3.5 grams. Pretty much the same result. So I waited a few days to be 100% positive that I had everything flushed out of my system and ate 6 grams. That was fun, and I went 3 days without an attack. At that time, 3 days was unheard of for me. I had an attack on the 4th day and decided it was time for a maintenance dose. I went for a smaller dose (2-3 grams) and within a couple days I had another attack. This went on for a few weeks. Testing dosages, length of time between dosages, and time between attacks. I kept a spotless log of all this by the way .... and I highly recommend anyone trying the method to do the same. Eventually a pattern will form. Anyways, after about a month I had eaten a BOATLOAD of shrooms but still wasn't able to go longer than 3-4 days without an attack. I had read somewhere about the "P-E-N-I-S Envy" strain and grew those next. They were much stronger. I ate 4-5 grams of those and could go a week without an attack. So I did that for awhile and life was pretty good I suppose. Then the wife filed for divorce, I had to move out of the house, and there went the grow. I wouldn't even know where to buy them off the street and I definitely couldn't afford it. Where I am living at the moment doesn't allow me to grow without putting other people besides just myself at risk ..... that's a bummer. So of course the attacks came back full swing. Maybe it was the change in seasons, maybe the stress from the divorce, losing my job, losing my health insurance .... blah blah .... who knows... but the devil came back with a vengence. I hadn't taken any verapamil or depakote in almost a year and I had a medicine cabinet full of the stuff so I just made up my own dosages and went to town. I was eating verapamil like corn nuts. No go. I quickly just fell back into that lethargic, weight gaining clone of myself that probably cost me my marriage in the first place. So I quit the pharms again. I have visited Dr. Tepper (Cleveland Clinic) a few times over the past year just to check in and keep him up to speed on things, but for now I am living on o2 and 4-5 rockstars a day. And the occasional Imitrex shot...... right back where I started. Sorry for being so long and drawn out :-/

yeah, yeah, i concur happy b-day!!

[smiley=dankk2.gif] [smiley=dankk2.gif] superb!!

I think you guys are giving my dog a complex. I told her that she is weird, but she says you are all weird?? ;D yeah, ill have to get it on video.... its pretty silly.

thanks for the tip. ill wait 5 days. and i took them right after dinner last night. simple chicken breast and rice and salad. i felt totally fine. i actually didnt sleep too bad (considering most nights) just that one wakening but o2 and a couple laps around the house killed it. i WAS able to go right back to sleep which is a bit out of the ordinary for me. normally once im up im up for a couple hours.

im still a rookie around here myself, but i would take preventative measures NOW instead of waiting. from my understanding, it is much easier to stop a cycle before it starts as opposed to busting while mid-cycle. it is probably the seasonal change as i understand this thing gets a bit worse during spring and autumn.

thanks for the input!! my insurance actually pays for everything. we have already met our deductible and oust of pocket max for the year. I did get a second mask a few months ago (ya know the cheap cheesy ones) and they did bill me for that because the insurance didn't pick that up, but I was able to pay the $6 right there in the office. im in there once a week exchanging tanks so they all know me pretty well. but yes, thanks for that info!! ill keep that in mind for right after new years when we start all over on insurance for the year.

thanks for the kind words shaggy!! yeah its NOTHING like those first couple of months before I got o2...... that was hell, everything since has just been a nuisance. ------------ well, no cartwheels this morning. just some leftover nausea. I ended up crushing 65 seeds last night. a couple of them didn't seem to have any/much white powder coming out of them so I used a few more to make up for it. I did have a rough night sleeping, and awoke around 3am looking for the o2. quick abort...... a few minutes walking around the house, and then back to bed. we are going through the seasonal change here in southern Michigan and im experiencing some sinus pressure today. its been raining for the past couple of days. anyways, that's pretty normal for me. I ordered 200 and received 300. bonus..... but how long should I wait before I give it another go?? I figure another 4-5 day's maybe?? by then I will have been off all meds for 5 days and I assume they will be totally out of my system.

im having a giggle tonight...... but there is something that i have been wondering about....... I suck straight from the hose when it comes to o2. inhale through tube in mouth, pinch off the line, and exhale through nose. my german shepherd will hear this from all the way across the house and come running. she will wait for me to exhale through the nose and lick the s'not outta me until I finish exhaling.... then she will sit patiently and wait for me to get another hit.... then she proceeds to lick the exhaled o2 right out of my nose again.... is my dog just weird or have you had this fun scenario happen to you?? haahah..... had to ask. we need some more fun threads around here 8-)

so it DOES happen good to know! d.v. = demand valve?? I have no idea what the cost would be. I can call back tomorrow and find out though. I just know that Apria agreed to get one, I called my insurance and asked about it, and they said if the doc prescribed it, its covered. I explained to them about the 0-15lpm valve and that my doc prescribed up to 17 if needed. as stated earlier, he only said 17 on the script because that kinda leaves things open to go more than the normal 15lpm max "regular" ones if needed. I told insurance that Apria had a choice of the 15-40litre valve or the demand and they getting the demand.... insurance said okie dokie. all good.

p.s. thank you for being you, and all that you do!

yeah I stepped my meds down fairly rapidly I suppose.... but I feel ok. today is my 1st day with no meds what-so-ever, and I know that I would have to be a few days med free for it to be completely out of my system, but patience is not my greatest virtue ;D also, I have an appt. set w/ my dr. in cleveland and I want to have a good dose in before then to relay effects and what-not. ill be going with 60 seeds tonight. also, and this is something I really haven't seen on this site, but when I was initially diagnosed back in jan. the doctor said I may wake up one day and "just know" that the cycle is done. obviously I find this pretty odd and intriguing.... and maybe this is for episodic people, but has anyone woke up and done cartwheels because they just "knew"??

last night I laughed myself into a cluster. never knew that was possible...................... but anyways, for those of you who have smart phones and text often, you MUST check this site out. my cheeks and stomach still ache 20 hours later from laughing so hard ;D www.damnyouautocorrect.com

seeds came!! will be giving them a go for the first time this evening. a couple more quick notes..................... I use Apria for o2. I believe its the only place in my area. anyways, I visited them today to exchange a few E tanks and set up delivery for an M tank (I know, I should done that months ago)....... well my dr. purposely wrote my script for 7-17lpm because he knows the ways of the world. Apria initially told me that their regulators only went up to 15lpm. ok, no biggie. but now that I see the necessity for a higher flow I gave them a little bit of guff about it today while I was in there. they are special ordering a demand valve for me and my new M tank and my insurance (united healthcare) is covering the rental cost. BONUS!! just wanted to put that out there for anyone in my shoes that is trying to make do with the "normal" 0-15lmp regulator. also.................. I was reading in the "airplane" thread and someone had mentioned keeping a copy of their o2 script with them at all times just in case. I think this is a GREAT idea. I have been doing that the entire time...... and thank goodness I have never had to bust it out...... but I always have a copy in the car or in my wallet just in case.

thanks for the input. I had planned on going pf-tek anyways.... but after reading the entire first post here and seeing 90g dry out of 4 mycobags and one syringe I figured I would investigate further..... and just happened to see the sale, so I figured I'd throw it out there thanks again for everything

gonna have to ride with ttnolan on this one. i have not flown since i was diagnosed and prescribed o2, but i am scheduled to fly here in the next couple of months ..... i think its very necessary to tell them ahead of time for your possible oxygen necessity. actually i figured my options were to either sachet up to the boarding desk wheeling oxygen, or call them first....... since all the 9/11 stuff i think ill call ahead

yeah yeah.... suckability.... i like it  thanks for the input, and its great stuff..... wish i could follow through with a demand valve right now, but the sans mask works best for me.