Jump to content
ClusterBusters
Sign in to follow this  
TheVerbalArchitect

Re: V.A. Update!

Recommended Posts

Brew,wasn't under that impression, I know it can take many doses ;) Went in this mourning to do my o2 "trail" worked on my attack. Now gotta wait and see.

"Are your hopes for getting O2 from other sources fading"

No, I just thought I would go along with getting o2 from my neuro first,now that the "trail" is out of the way they should get rollin on getting me my o2. I still have to wait two weeks though till my next appointment,on the 15th of Feb. To see my neuro.

I will continue dosing on seeds and the usual Red Bull,planning on trying Fun Guy in a month if the seeds have no effect.

Wish me luck ;)

The V.A.

Share this post


Link to post
Share on other sites

That is all nonsense. It pisses me off too.  AO your post on the verap and combo meds exacerbating the disease was so right on and based on (clearly) the real deal - the experience - that only We can understand. A quip about drinking ANY booze in a cluster makes me wonder if that's all BS and he has no where else to troll. We are the truth - the pain is the truth. Your compassion moves me.

Share this post


Link to post
Share on other sites
...A quip about drinking ANY booze in a cluster makes me wonder if that's all BS and he has no where else to troll.... 

Hang around a bit and you'll find that there are a (small) percentage of CH'ers who can drink booze with no problem (I'm not one of them! I won't even sniff the stuff when in cycle).

Nobody on this thread is a troll, we're all bruthas and sistas in this fight to slay the beast, so I say let's hang together and kick some beast booty (OK that's easy for me to say - I'm outa cycle right now, when the s***t is hitting the fan though, I've unfortunately been known to be a bit more erm....excitable).

Share this post


Link to post
Share on other sites

Did my o2 trail that they wanted me to do on Friday,now I'm just waiting for my appointment on the 15th of next month.I'm hoping to god they prescribe it to me.I'm bringing the articles in when I go. Doing my second dose of R.C. tonight (40) seeds. Attacks have been frequent (3-4) a day plus a beasts every night. Just gonna hang in there for now.

One Love

The V.A.

Share this post


Link to post
Share on other sites

VA,

Three and a half weeks before you can start getting O2!?! (I say "start" because then you have to wait for actual delivery.) It really is time for somebody--you, your gal, your mother, a friend . . . somebody--to get a lot more aggressive about this.  Call every day to see if there's an opening; try another neuro; try a headache center; push those EMT relatives to come through; get the welding stuff; beg; borrow . . .   I don't know . . . if you go to an emergency room, might they prescribe it?

Also -- Maybe you have good reason for 40 seeds, but I think some folks would recommend going higher.

Share this post


Link to post
Share on other sites

I will be making a few calls tomm. I will do what I can.I have been trying to be as aggressive as I can without pissing my docs off to the point where they wont help at all. I have done a lot of reading on diff. doses. I plan on going higher,just trying to work my way up slowly.

Sorry I cant type more

not feeling well

Share this post


Link to post
Share on other sites

VA, please don't think I'm getting on your case in any negative way.  I went through a similar thing with my daughter, who didn't want me to piss off her neuro or her oxygen supplier (both of whom, as someone wrote here, deserve to be shot for their inadequate and uncaring treatment of her).  I guess your situation just touches me because it seems so close to hers and because I saw the difference that O2 could make. 

I will only say that I approached it very apologetically with her providers: "I'm really sorry to bother you again; I know you have a lot of patients in need of your help, but my daughter is suffering the worst pain that a human can endure, cluster headaches, and I don't want to see her suffering any longer than she has to. Do you mind if I call every morning just to see if you might have an opening?"  Of course, this works easier if someone else is calling on your behalf.  But I did get her in to the neuro 11 days before her scheduled appointment using that approach, and the O2 folks finally went out of their way to get her the right equipment. (I sent flowers with a thank-you note in her name to both of them afterward, too, just to be sure they remembered her, even though I would rather have sent them something more lethal.)

Forgive me if this advice is way too parental. I'm just throwing out what I have, 'cause I'd sure like to see things get better for you. 

Share this post


Link to post
Share on other sites

CH Father ,I took no offense to any of your posts ;) You and everyone else here has been a great help to me and others. I called my nurse this morning and she said I had to come in for ANOTHER trail! I kept my cool and told her how concerned I was with everything,she said she would see if my neurologist would start me on O2 therapy at home A.S.A.P. .Waiting on their call now. I'm sure she will just call back and say I need to come in for another trail but I WILL be calling in everyday until its resolved. If nothing can be done I will be going to another doc or going to a local supplier. Most days I'm stuck bed with clusters,no motivation, don't feel like dealing with all the B.S. . My mom has always been in the mix and it drives her crazy. I called her yesterday and told her how badly i needed the O2.She is on board to get it for me by any means possible.

Thanks to everyone,for everything, priceless. I know it doesn't seem like I have much control over my situation yet but having a place to go like this brings my spirits up. Yes my days are still filled with attacks but you guys give me the motivation to keep on truckin. Thank You!

And to Agent Orange, the texts and phone calls have been great. You are one of the many on here that will do anything to help others. Dedicated 110% to help.

Till next time

The V.A.

Share this post


Link to post
Share on other sites

The nurse called back,she is the first nurse I have talked to that has taken me seriously. My neurologist still wanted me to do one more trail but the nurse insisted and made the O2 order! Only problem is it will be 7 lpm. Will I need to get a diff valve? I know I need at least 15 lpm.

Me happy

The V.A.

Share this post


Link to post
Share on other sites

VA, this is very good news.  Congratulations!  It is a critical first step, so you have leverage for the next ones.

But I wouldn't count on 7 lpm and wrong mask being the only problems.  First, make sure it's not a concentrator, which won't help you at all.  Has to be a tank.  And it has to be a big tank, and/or multiple smaller ones, or else you'll be running out of O2.  (You actually want big tanks and small ones, because the small ones are a lot more portable.) When you get a tank, if it's an e-type (see the oxygen file at the menu tab on the left here, or just ask your provider) and you don't get a decent regulator, remember my offer and PM me.   

I'd try to call that nurse back right away and get things straight, though, so the prescription says 15 lpm regulator.  You could email/fax/hand-deliver the articles to her so she knows you're not making all this up. At least the JAMA one, and probably the other one, too, specifies high flow with non-rebreather mask.

Share this post


Link to post
Share on other sites

I agree with calling the nurse back, or when you talk with the O2 supplier let them know you need a 0-15lpm reg...they may supply. As is, they'll need to give you at least a 0-10lpm. Getting the script right is the best path. (why do they do that!)

CHFather is right about making adjustments. I needed to adjust my tanks,  etc. Originally the only one I got was one huge tank which was OK, but I always needed to go to the O2 and sometimes that wasn't practical - you know, the mid-hit confusion stuff's on the second floor what was I doing again crappy feeling thing. I was able to just ask the o2 supplier for what I needed though and they adjusted without a problem. If course, it wasn't right away.

-T

Share this post


Link to post
Share on other sites

VA,

to reiterate:

   >at least 15 lpm flow on the regulator (i guess Takinit is saying 10 might be okay if that's all they'll give you; worth trying??--I'm not an expert)

   >non-rebreather mask (for some people, including my  daughter, a breathing tube works just as well and is less claustropobhic, but the non-rebreather mask is probably your goal)

   >at least one large tank; but preferably at least one large one and at least one smaller one

i believe all those things should be relatively straightforward to get. Takinit might be right that you might be able to get things from the O2 supplier once you have a basic script, but like he said, it's a lot easier if it starts from the doc's office.  and of course if all you can get is a tank and whatever they'll give you, of course you should accept that and DIY from there. i am pretty certain, though, that a concentrator (a machine that makes O2 from ambient air) will get you nowhere, because the flow will only go up to 7 or 8 (that was the first thing they gave my daughter).

i think you should personally call the O2 supplier once the script is in to them, double-checking to make sure they know what you need. (i'm telling you all this from my experience with my daughter, where everybody who could screw up, did, in almost every possible way. including the neuro who said she'd fax the script to the O2 people right away, and then went home without having done so, and the O2 people who didn't set up the tank for us and left without giving us the wrench we needed)

when it's delivered, have them set it up and show you how to use it (as they should do).  it's all extremely simple once you know how to do it, but there's no point having problems or anxieties when you finally settle down for what we all hope will be some well-earned, blessed RELIEF.

and be sure to look at the O2 file, re such things as blocking off one hole in the mask and cutting off the elastic straps on the mask (so you don't fall asleep with it on).

jerry

Share this post


Link to post
Share on other sites

Sorry if I wasn't clear. I don't think 10lpm will be enough. I'm just saying that the supplier will probably provide a 0-10 lpm regulator.

Keep in mind that the script probably won't specify how much O2 or what type of cylinder, it will just specify the flow rate and mask type. That's why you want to talk to the supplier regarding the tanks you need. I recommend several E-tanks (the small portables) and one larger M or H tank.

-Chris

Share this post


Link to post
Share on other sites

Yay today I got to talk to the crazy nurse! What happened to the nice one from yesterday!

I told the nurse today I need 15 LPM,she said "No!" .7 LPM is already a lot she said,refused to listen to me,so I said give me your fax number so i can show you documents stating why I should be on 15 LPM. Another frustrating day

Thanks Guys

The V.A.

Share this post


Link to post
Share on other sites

Hang in there. All this crap is par for the course for a lot of people.  Remember, too, that getting a tank is key, whatever nonsense they're going to tell you about flow; you can DIY from there.  If the nurse might be willing to watch a crappy but eventually informative news report, there's a short youtube video that mentions the JAMA high-flow study and might educate her a bit about what you're going through and what you need:

Share this post


Link to post
Share on other sites

Yeah, what CHfather said - personally I don't bother arguing liter flow with whoever is writing the prescription because I know it's not only useless having a battle of facts with an unarmed idiot medical professional, but it could make them want to refuse to write it.

I just take their moronic 7 LPM or whatever prescription, use it to get some oxygen, then proceed crank it to 45 LPM and abort some attacks!

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
Sign in to follow this  

×