I cannot begin to EXPLAIN how utterly ticked off I am!!! [smiley=furious.gif]

Let me begin my rant......

Saw a new neuro today that my GP had referred me to.

Shook his hand, and didn't hesitate to begin our conversation with O2.

I told him i needed O2 with 25lpm and non-rebreather mask. Dr. Charles Marable (Board Certified In Neurology) shook his head and said "HOGWASH! Where did you here that?"

I was stumped! Then it became a battle of "cluster headache wisdom"...ya know...who knew more.

He said " I'm going to schedule you for a MRI 4-27-09, and in the meantime ( watching him go for his rx pad) Let's put you on Calan,  indomethacin, and get you some refills on your Imitrex.

Understandably he didn't prescribe the pred taper because i had just had a steroid shot at the GP a little over a week ago.

I was out this visit $80. and were not talking about the last two visits this month or all the diff meds.

NOW...some of you are going to say.... Get another neuro. OK.....with what? my looks and personality??

I'm going the Cluster Busting route. My decision has been made. I fully understand the legalities of the issue and am just fine with my decision.

I just cannot believe he would not prescribe me the O2. I looked up all the meds prescribed to me today, and OMG! You should see the side effects that come with all of these drugs !![smiley=JAW_DROP.gif]

Where do some of these neuro's get their licenses? A bubble gum machine? [smiley=hammer.gif]

My rc seeds should be here hopefully in the next few days..

-Kimmie

It don't take no Doc. to get oxygen.

          Kinder gentler Potter

Calan is Verapamil  which is a great preventative for many when used at an appropriate dose.

Inocin (Indomethacin) is a strong anti-inflammatory which is generally not considered effective for Clusters, but actually has worked for some people. I recall Jonny using the suppository form as his primary abortive years ago along with O2.  Indo commonly used for CPH and your Neuro may be trying to rule out CPH in your case.

If O2 works well for you, nothing will stop you from getting it.

1. You have regularly seen us recommending that you print out medical information on specific treatments to give to your doc when you are asking for something specific. Most docs will at least consider your request when the supporting material comes from a medical source known to doctors.

2. Re. side effects of medss:

I posted this message on a chat group for dog owners (Vizsla). The issues are the same whether we are talking about animals or humans--so a little translating of words will make it understandable. The core idea: side effects are not an absolute--yes/no--issue. We must always balance potential risk with potential benefit. I'm concerned with the tendency to present comments about medicine side effects in terms which frighten folks away from trying meds which might be of benefit.
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This question about side effects from food (allergies) or medications pops up regularly. The problem is, we don't ask the correct questions. The issues are:

1. What is the rate or chance or probability that any particular side effect will develop?

Without information it's easy to assume that the list of side effects is a statement of what will happen if the med is used. In fact, side effects are reported in human medicine/vet literature as a rate of occurrence ranging from less than one percent and ranging upward.

It's important to ask the Vet for two pieces of information: what are the side effects?; what is the rate or chance that a particular effect will occur? Without information it's impossible to make a good judgment about using or not.

2. How serious are the side effects compared to the condition for which the med is being used?

We have a member whose Vizsla would have died from a systemic fungal infection without a med. The problem is that this med has serious and frequent side effects--but there were no treatment options.

3. How important is my judgment about the risk of side effects vs. the benefit of using this med?

This is a wholly subjective judgment which no one can make for us. We make a decision about how much risk tolerance we have; what are we willing to bear.

Bottom line: A list of side effects is a statement of POSSIBILITIES. It is not a PREDICTION of what will occur. Wisdom calls for knowing both the risk and asking the vet what to look for, i.e., symptoms of side effects.

The Indo the doc prescribed me is oral. You mentioned Johnny using suppositories. Does that mean there is major stomach discomfort with this med?

My CH has pretty well fizzled, thankfully.

POTTER-
We don't know anyone in the welding biz to get O2. Hell...we pretty much don't know anyone here in TX. Sucks.  :-/

Kimmie wrote on Mar 16^th, 2009 at 3:26pm:

The Indo the doc prescribed me is oral. You mentioned Johnny using suppositories. Does that mean there is major stomach discomfort with this med? My CH has pretty well fizzled, thankfully. POTTER- We don't know anyone in the welding biz to get O2. Hell...we pretty much don't know anyone here in TX. Sucks.  :-/

Pray tell why would you need to know someone in the welding biz. to go into yer local welders supply store and lease an oxygen tank?

        Kinder gentler Potter

Kimmie wrote on Mar 16^th, 2009 at 3:26pm:

The Indo the doc prescribed me is oral. You mentioned Johnny using suppositories. Does that mean there is major stomach discomfort with this med?

As an abortive, suppositories work much faster than swallowing a pill.

Some of the things that welding O2 is sometimes purchased for, include:

- Experimental fish aquarium/farming projects. Fish raised in oxygen enriched water grow faster. This requires lots of O2 being bubbled into the water.........

- Hydroponic gardening projects.

- Glass blowing or other metal forming/bending art projects.

Mine comes from my local auto parts place "because my buddy is going to teach me how to weld............"

Welding tanks use a CGA-540 type fitting on top. Medical regulators are available in two types - one of the two types is the same - a CGA-540 - that's what I use.

Other people just buy a welding regulator, then buy a nipple adapter to fit the clear tubing from the mask to the welding regulator. (I'm sure someone remembers the number) The advantage to this method is virtually unlimited flow.

Marc

Edit to add: I'm not suggesting that you actually breathe welding O2, because it's not medically certified and someone could yell at me for suggesting something improper, which could in today's climate could be considered offensive.

Completely understandable Marc.

We've all been there.

Thank you Potter...forgive my "woman-ness" lol
Didn't know i could prance my happy ass on into a welding supply store and lease O2. ..WOW!

BTW- What color heels should i wear with my overalls?? ;D

Kimmie wrote on Mar 16^th, 2009 at 6:33pm:

Thank you Potter...forgive my "woman-ness" lol Didn't know i could prance my happy ass on into a welding supply store and lease O2. ..WOW! BTW- What color heels should i wear with my overalls?? ;D

Now THAT is pretty funny! ;D ;D ;D [smiley=crackup.gif] [smiley=crackup.gif] [smiley=crackup.gif]

Hey Kimmie,

           I was going thourgh alot of the same shit with the doctors as you are now. They never want to be told  something that makes them feel like they are not looking at everything. After all they went to school for a long time to get that little white coat they wear.

           So, after the doctor gave me 2 meds i never did before, that didnt work, I went to the clusterbuster method and have had only one hit (Kip 6), and it has been over a year now. I normally get 2-5 solo shots a year, but not this time. I truely am sold on those seeds and my 02 ( although my tank is awfully dusty) If you need some advise im here as well as some others. You just took a big step in trying to get your life back.


                         Good luck.. Coach Bill


                               

Im with ya Bill.

I'm "detoxing" of all meds until i get the seeds in a few days.

Kimmie wrote on Mar 16^th, 2009 at 3:26pm:

The Indo the doc prescribed me is oral. You mentioned Johnny using suppositories. Does that mean there is major stomach discomfort with this med? My CH has pretty well fizzled, thankfully. POTTER- We don't know anyone in the welding biz to get O2. Hell...we pretty much don't know anyone here in TX. Sucks.  :-/

What part of Texas are you in? I'd find a different neurologist, specifically, one of the ones listed on the OUCH site. There's a list of sufferer-reccomended neurologists.

Your GP should be able to prescribe the oxygen, the only thing I can think of that MIGHT have shocked the neurologist would be the 25lpm, since the stuff on that hasn't been published yet... Frankly, my headache specialist suggested that if we had to, call around to different home health cares and see who would just provide tanks of pure oxygen. It's how we found someone who was willing to give it to me at the proper flow rate.

Indomethacin isn't just for the CH. That's part of a test that they do to make sure that you're dealing with CH, and not with one of the other conditions that're closely related. If you're dealing with one of the other problems, the Indomethacin could cure it completely. Most of the diseases that the Indo is involved with, have a 100% sucess rate when using Indomethacin.

I hope the seeds work for you!

PFDAN
Mystina