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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> My Intro, My Heartfelt Thanks, and an Assignment
        
(Message started by: eyepopper on Sep 10^th, 2006, 6:29pm)

Title: My Intro, My Heartfelt Thanks, and an Assignment
Post by eyepopper on Sep 10^th, 2006, 6:29pm

Hi Everyone!

I’ve been a “lurker” here for about two years, mainly because I am so shy. I wanted to thank you all. I hope you realize how helpful it has been to read your posts and learn from you.

I started my “eyepopping” journey eleven years ago after the birth of my lovely daughter, Lauren. Two weeks after her birth (I was age 33), the beast made his first visit with an eye-gouging pain that hit me for 1-2 hours several times a day over a period of three days. The pain was one-sided (left) and it was preceded by my eye tearing, swelling, and a runny nose on that side. This was the beginning of an (approximate) 6 week series of cycles that I ended up living through each Fall and then again in the Spring for about three years. My General Practicioner said they were “sinus” headaches. I ate Sudafed, other OTC sinus meds, and Excedrin like candy, only to have the headaches worsen. (I often wonder what my liver looks like now!) Like most of you, I cannot touch alcohol, especially red wine.

Due to an insurance change, I found a new GP who told me about clusters and gave me the name of a specialist in the area (Dr. Robert Kaniecki—at the University of Pittsburgh Medical Center – who also happens to be recommended on this site). The GP then sent me for an MRI, which turned out to be normal. It turns out that Dr. Kaniecki wasn’t on my insurance plan, and was very expensive. So I continued to rely on the care of the new GP. I took the Relpax as needed. Time went on, and my clusters moved from episodic to chronic. I began to have about two weeks of repeated daily (and middle of the night) excruciating pain in the eye episodes, followed by 4 to 7 relatively pain free days before a new cycle would start all over. I got (and still get) no other breaks. With this change, I decided to find a neuro on my insurance plan. To make a long story short, the new-found neuro kept me on Relpax, had me try Lamictal and later Topamax. Neither worked, and Topamax made me as dumb as ever. I also experienced some weird side effects. I slowly stopped the Topamax, without telling the neuro. He never seemed to listen to how I felt. I only continued with him to get the Relpax (which, in retrospect, didn’t seem to help me that much).

A few months ago, I decided to ask the evil neuro about oxygen therapy because I read that so many of you had been helped by it. He (very condescendingly) said, “Now what good would oxygen do?” (I felt like I was back in second grade in Sister Florine’s class!) I explained that I had heard from other cluster sufferers that it sometimes helps abort attacks, and he said, “Are they doctors?” I knew I was banging my head into a brick wall, so to speak, (and I didn’t even have a cluster at the time!) That did it! I wanted to shout and cry all at the same time. I knew he was not willing to try to learn about anything that might help me. His receptionist set up another appointment for September 18th for me, and I took it because I knew it was the only way the doctor would refill my Relpax.

I didn’t know what to else to do. I decided to call Dr. Kaniecki’s office. They told me there was a six-month wait to see him. I was very upset, and I told them that I got cluster headaches, and I didn’t know what to do anymore. The receptionist said, “Cluster Headaches! Dr. Kaniecki treats those patients as a priority.” I explained that Dr. Kaniecki wasn’t on my insurance plan, and she said they would check to see if my insurance would pay for some of the out of network costs. She said the doctor had other patients in my position, and they’ve been able to make payment arrangements and work things out. She said to be prepared, because the next time there was a cancellation, she was going to call me to come in. Two weeks later, I got the call.

Dr. Kaniecki was so very kind and helpful. I got the impression that he truly, truly, understood and cared about me. For the first time, I had hope. He is putting me on melatonin 3-6 mg at night time, magnesium 250 mg twice a day, Imitrex nasal spray (he said the Relpax was probably doing me little good, because it took too long to get into my system), verapamilSR, 240 mg. (We’re going to slowly “ramp up” to gradually build to the 240 level to attempt to prevent dizziness.) AND my very own oxygen tank and non-rebreather mask! (10 liters/per min for 10 minutes as needed). I just picked up my meds from the drug store, and will be faxing the script for the O2 to a medical supply service on Monday. The doc said that I may call his office any time I needed help, had questions, or if I found that things weren’t working for me. God bless him! . . . and God bless you all. Without the posts to this board, I would have never known how to get the proper help.

Now for your assignment and "creative" suggestions. I still have to fire the old neuro. (Remember the Sept. 18th appointment?) How would YOU go about canning this guy? I am sure you will have some creative “eyepopping" suggestions of your own!

Thanks again! Eyepopper (a.k.a. Debby)

Title: Re: My Intro, My Heartfelt Thanks, and an Assignme
Post by Racer1_NC on Sep 10^th, 2006, 6:44pm

I'd just call and state "I am no longer requiring the services of Dr. XXXX. Please cancel my appt."

Bill

Title: Re: My Intro, My Heartfelt Thanks, and an Assignme
Post by jon019 on Sep 10^th, 2006, 6:58pm

Hi Debby,

Welcome! Glad you have found home.

Don't waste your time or energy getting back at this neuro. He won't care. Better yet, hope he is just ignorant rather than stupid, cuz ignorant is curable while "stupid is to the bone".

Print out all the info you can find here (to the left) and send it to him. You may be doing a fellow clusterhead a huge favor. Hope he has an open mind, and if not, pray for him cuz he's a knothead and in need of redemption.

Regards

Jon

Title: Re: My Intro, My Heartfelt Thanks, and an Assignme
Post by eyepopper on Sep 10^th, 2006, 6:59pm

Thanks Racer . . . That actually is what I'm going to do, and I'm going to tell him why I left. (i.e. He wasn't much help and wasn't interested in looking into the current methods for preventing/aborting clusters.)

I'm also going to print some info from this site (about O2 as an abortive, cluster meds, and the blurb on how to treat cluster headaches). That's what I really should have done prior to going in.

Since the former neuro's remarks were said in a condescending way, I thought you all might come up with some humorous responses for me.

Thanks for your help.

Deb
[b][/b][/i][i]

Title: Re: My Intro, My Heartfelt Thanks, and an Assignme
Post by georgej on Sep 11^th, 2006, 12:02am

Hi Deb, and welcome.

We discussed something like this fairly recently, when one of our members wanted to read his/her old neuro the riot act. I believe that the consensus was that it would most likely serve no purpose. While I fully understand that it would be immensely satisfying to hang one on your ignorant ex-neuro, what other purpose would be served? He's most likely not going to change his mind or his ways.

In my admittedly personal opinion, I think I'd prefer to pick my battles here. You've done so, admirably, and are now getting what sounds to be excellent care. As far as battles go, you've already won. So what's to be accomplished?

I agree with racer_1--simply say that his services are no longer required, and that you're cancelling your appointment. At least that's what I'd do.

Best wishes,

George

Title: Re: My Intro, My Heartfelt Thanks, and an Assignme
Post by eyepopper on Sep 11^th, 2006, 8:13am

Yeah George -- After giving it some more thought, I think you, Racer, and Jon are right. What good would a negative response be?

I guess the only constructive thing to do is to politely cancel, and send him some good information from this site. Maybe at least the next time this doctor encounters a clusterhead, he'll at least give some thought to trying things that work for other people.

Well, I'm glad I found you guys. I count myself lucky to have come across great people, great information, and a great doc. Also, (not that I want anyone else to suffer), but it's nice to know I'm not alone. You all have restored my hope.

I'm so glad I found you all! Thanks again!

Debby

Title: Re: My Intro, My Heartfelt Thanks, and an Assignme
Post by JenniferD on Sep 11^th, 2006, 9:56pm

Hi Debby. Welcome to Clusterville :) I think it is fantastic that you took so much info here to your doc and didn't take that neuro's b.s. You deserve good treatment from a well-informed and knowledgable doctor and dont have to settle for some dumbass's crappy attitude to the nightmare you (we ) face.

I've recently gone thru relpax hell so I know it isn't the "wonder drug" for ch, at least for me it wasn't.

As far as firing the evil neuro. .. F him. Don't waste your time. Cancel ...of course w/24 hours notice so the rat bastard doesn't bill you.... and send him TONS of info on ch. Not just from this site but from other reputable sites like WebMD.com. Let him feel like an idiot alone.

Looking forward to hearing from you again.

Jen

Title: Re: My Intro, My Heartfelt Thanks, and an Assignme
Post by MJ on Sep 12^th, 2006, 1:13am

on 09/11/06 at 21:56:55, JenniferD wrote:

Hi Debby. Welcome to Clusterville :) Cancel ...of course w/24 hours notice so the rat bastard doesn't bill you.... and send him TONS of info on ch. Not just from this site but from other reputable sites like WebMD.com. Let him feel like an idiot alone.

I like this one. I would say that you found someone knowledgable with CH though.
If he reads he just may be able to help someone else along the way.

Title: Re: My Intro, My Heartfelt Thanks, and an Assignme
Post by RichardN on Sep 12^th, 2006, 3:55am

Hi Debbie

Congrats on finding a caring/knowledgeable doc.

It was info from this site that I took to my doc (after a year of non-working meds, "normal" tests and mis-diagnosis . . . which netted me a Verapamil and 02 script. Had my first PF day at 240 mg (got hit 3 times that night, but had the 02 to abort) . . .got as high as 360 mg (many here take much more and in combination with other drugs such as lithium). You will get accustomed to the Verapamil "buzz", and the more you take, you may have some problems with constipation (I did), but that's easily solved by diet or stool softeners.

Make sure you get a non-rebreather mask (the one with the bag) or Clustermask . . . very important to get the most effect. Use it at the first sign of an impending attack. I usually have my regulator set at 12-15 lpm . . . . DO NOT USE THE STRAP ON THE MASK AT NIGHT! You will need several tanks depending on how many attacks you experience (and the duration of same). I keep 10 "E" tanks (about 3 ft tall) and two small "B" tanks (will fit in a backback or under the car seat). Hoping it works for you as well as it does for most of us (most of the time).

Be Safe, PFDANs

Richard

Title: Re: My Intro, My Heartfelt Thanks, and an Assignme
Post by eyepopper on Sep 13^th, 2006, 2:36pm

Jen, MJ, and Richard,

I just wanted to give you all a quick thanks for the warm welcome. Except for the "pain ticket" that you need to get in to this site, it truly is a nice place to be. I can see that people are genuinely caring and helpful.

Thanks too for the advice. I will take heed, and give things a try.

Thanks to the others for your responses too. I think I'm going to have some more questions as I "ramp up" to my Verapamil dosage, and when I get the 02.

You've all been great. See you around the board!

Hugs and PFDANs

Debby