Shot down(again)...ranting/rambling.UPDATE!

[John]

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?

[John]

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).

[Jsmacks]

Shot down again. Even AFTER she admitted to knowing that is is 98% effective in aborting an attack.

Fire their ass. It makes no sense to me that someone who admits a treatment of being so effective, would prefer another route.

I feel you. Keep looking up. Find some o2, maybe welder's O2, detox, and hit up those seeds. Hopefully, the tincture will do something for you  in the meantime.

PFW man!

-Jordan

[Psiloscribe]

OK, I'm missing something here.

The GP agrees that 02 is effective, so WHY didnt you get a script?

The Trex is supposed to be enough? Rather than use the 02 while seeing if the topamax will work, you get to try it without having something that does work?

You can't abort every attack with Trex and 02 is safer than trex. ...so...

WTF? What am I missing?

Bob

If I'm missing nothing, I wouldn't have left without a script for 02.

[Pixie-elf]

Fire the GP if you can. That's crazy.

I'd lay it out "You either give me oxygen, or I go elsewhere. I like your treatment of my other problems (or if you don't, say so.) but you admit it is effective..."

...I'd flat out tell 'em DON'T BE A LAZY ASS. It's my life on the line, not yours. WTF? If it works, why give me drugs?

Sorry, hope your seeds get there soon! Crazy friggin doctors....

Mystina

[CHfather]

First of all, to quote the two previous posters: WTF????  That's just disgraceful.  Can you do welding O2 somehow?

Ordered 200 RC seeds from iamshaman.com, and licorice root tincture/vit d3 from hannasherbs.

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

[tingeling]

Find another doc!! this is just not acceptable!!!

[John]

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.

[John]

First of all, to quote the two previous posters: WTF????  That's just disgraceful.  Can you do welding O2 somehow?

Ordered 200 RC seeds from iamshaman.com, and licorice root tincture/vit d3 from hannasherbs.

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.

[ThatHurtsMyHead]

John,

Sorry you're going through this with the Dr.  I 100% agree with everyone above WFT... FIRE HER A$$.....  Doctors are everywhere.  In my opinion the ONLY reason a doctor would withold O2 is that the drug companies can't get a cut of your hard earned money!!!!!!

I'd find another GP, setup the appointment with the expectation set before the appt that you have CH and need a 'new' script for O2.  (Bring your O2 documentation etc).  I'd never look back at your prior doctor.  She clearly doesn't understand CH nor appears to care...

If used properly O2 is simply put a LIFE SAVER!

Good luck and PFW to you!

Jeff

[clustermom13]

What happened to "first do no harm"!?!

Your GP is an idiot, we had one of those once-dropped her like a hot potato!  Get a neuro, or better yet a headache specialist. 

[John]

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!

[John]

OK, I'm missing something here.

The GP agrees that 02 is effective, so WHY didnt you get a script?

The Trex is supposed to be enough? Rather than use the 02 while seeing if the topamax will work, you get to try it without having something that does work?

You can't abort every attack with Trex and 02 is safer than trex. ...so...

WTF? What am I missing?

Bob

If I'm missing nothing, I wouldn't have left without a script for 02.

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.

[Hipshot]

They call It Dope a max for a reason. I was stuttering ...even stuttering in my thoughts when I took topomax. Bad stuff.

You must drop whatever it is that you are doing and get the correct oxygen setup. We all have oxygen. Get it by whatever means.

Get a new doc or go lease a tank...a big tank . Mine is $40 per year and under &10 to refill. Go to menu and to the oxygen page and get an optimask. Go to harbor freight or something similar and get a regulator that goes to 15lpm minimum. You can have it done in one day and you will be sooo very glad that you did. It will save your life.

Glad to have you join the group.

Dan

[John]

They call It Dope a max for a reason. I was stuttering ...even stuttering in my thoughts when I took topomax. Bad stuff.

You must drop whatever it is that you are doing and get the correct oxygen setup. We all have oxygen. Get it by whatever means.

Get a new doc or go lease a tank...a big tank . Mine is $40 per year and under &10 to refill. Go to menu and to the oxygen page and get an optimask. Go to harbor freight or something similar and get a regulator that goes to 15lpm minimum. You can have it done in one day and you will be sooo very glad that you did. It will save your life.

Glad to have you join the group.

Dan

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.

[Hipshot]

Just go there like you own the place and tell them you would like to lease an M tank. You already have the acetylene if they ask. You can buy or lease small tanks too for the car etc. But I wouldnt worry about the small tank for now.

It is very important. You will find that it is your life line.

Dan

[Hipshot]

I have a prescription. I never had a problem with doctors prescribing it. Some people can't get a script so they become welders for a day. I go to an air supplier and bypass all the middle men. They feel sorry for me and cut me slack on the price, but whatever the price is you will find it to be priceless.

Dan

[Bonkers]

Hi John,

I hope I don't get in trouble for saying so, but WTF do you need a doctor for? As suggested, get your oxygen from a welder's supply and a proper mask and seeds over the internet. You can get all the info you need here and if you decide to do shrooms, grow your own.

Ron

[CHfather]

And it ended with her telling me that she doubted my insurance would cover it. 

First of all, you might have noticed in one of the articles you printed out that something like 45% of cluster headache sufferers get their own oxygen outside the medical establishment.  That's mostly through welding oxygen, and I suppose largely because of idiot, uncaring so-called "doctors" like yours.  So you won't be doing anything unusual if you do it that way.  Be aware that you only get the tank there; the regulator and mask you get separately.  (Knowing nothing, I once walked into a welding place and asked for tank, regulator, and mask -- got turned down and sent away fast!!!)

But, trying to piece this all together, maybe the insurance issue is one reason why the idiot didn't prescribe O2?  If so, have you called your insurance company to check?  It's definitely my impression that many, if not most, insurance companies do cover O2.  It's the front-line, medically-proven technique for aborting CH HAs.  If you found that your insurance company did cover it, is there any chance that if you called back the idiot, told her how terribly the current meds are working, asked again for O2 and told her that your insurance company will cover it, that she'd let you have it?

I'm asking this because things can happen quicker with a prescription for O2, and a 15-lpm regulator and a non-rebreather mask, than if you're putting it together by purchasing all the parts.  But whatever way you go, do not waste time.  As so many others have said, O2 will change your life, or even save it.

If you go with welding O2, I -- and many others here -- can give you advice about the mask and regulator, if you don't feel you're getting clear enough information here: http://www.clusterheadaches.com/O2/index.html

[John]

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.

[John]

Hi John,

I hope I don't get in trouble for saying so, but WTF do you need a doctor for? As suggested, get your oxygen from a welder's supply and a proper mask and seeds over the internet. You can get all the info you need here and if you decide to do shrooms, grow your own.

Ron

Been asking myself this all day long.

[Psiloscribe]

wow, OK, where to start.

It's obvious your GP has no idea how devastating and painful clusters can be. The only other option is that she does know, and doesn't care. I hope that wouldn't be the case.

If she is the one that diagnosed clusters, I'd be worried. She probably thinks they are migraines that come and go.

To make you wait three weeks to start trying to get 02 for you is ridiculous.

Topamax is NOT an abortive and is supposed to be taken every day. Doses should be started out low (100mg a day or less. Some people need to start at 25mg a day) and built up to a therapeutic level. This is usually the point where you forget where your car keys are but you know what a car is. If you find your keys and try to start your toaster with the door lock remote, your dose is too high.

It is not your GPs job to decide if you should get a script depending on if the insurance company will cover it. Its her job to write the script and to make the insurance company cover it as a medical necessity.

Treximet is for migraines, not clusters.

Its a slow acting tablet. Too slow to treat an attack and by the time the next attack comes around, it's worn off.

Treximet is nothing more than a "patent play" used by the manufacturer to extend its patent on Imitrex.

A study showed that Imitrex, when taken along with Naproxen (a simple tablet of Aleve) was a little more effective for migraines.

Instead of simply telling people to take an Aleve along with their Imitrex tablet, they made a tablet with both and charged more money for it. (and got new patent protection on their exorbitant pricing structure)

If your insurance company thinks you have migraines based upon what you've been prescribed, they may NOT cover the 02.

It is sad, but there are many doctors out there that don't have a clue as to what clusters are or how to treat them.

Bob

[alleyoop]

It is sad, but there are many doctors out there that don't have a clue as to what clusters are or how to treat them.

Sad, yes.  I'd go so far as to call it a crime that they are so poorly educated.

bobb

[ThatHurtsMyHead]

Oxygen will change your life...!!! Period!  (for the better

Jeff

[kaboom]

So sorry your going through such pain and frustration. 

I really hope you're able to get an appt with a nuero soon.  It worries me that you have concerns over how different this cycle is from what you've experienced during  past CH cycles: both sides, pulsing, explosion from left to right, nausea.

 

"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."

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.

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.

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.

Since insurance coverage seems to be your GP's concern, have you considered telling her that you've decided to just pay out of pocket? (that way she doesn't have to fret over dealing with the insurance)  You can always fight with the insurance later.  Honestly, I've never had insurance coverage for 02 during the 12 years I've been using it.  If you can get the prescription (I've had Dr.'s admit to not knowing what to write for the prescription - "02 therapy as needed for treatment of cluster headache 15LPM)", just take it to the medical supply place and tell them you don't have insurance coverage. The regulator and mask you buy and keep - the tanks you exchange (may have to lease) when empty for a full one (small charge).   

I've specifically asked a doctor about welders 02 when he suggested I go this route (no medical 02 supplier in the town I recently moved to).  He said there is no danger using welders 02 as it is just as pure as medical 02.  

Agh, I don't blame you about never wanting to take another Topamax.  This was one of the worst meds I ever tried for CH.  Couldn't keep my balance/think/remember/talk.   

Good luck with the seeds.  You've got lots of supporters here to help you along the way.