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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> New here
        
(Message started by: julieknfla on Jun 2^nd, 2006, 7:45am)

Title: New here
Post by julieknfla on Jun 2^nd, 2006, 7:45am

Hi, I'm Julie. Although I have never posted here, I have been visiting this site off and on for the last 3 weeks. I can't begin to tell you how much I appreciate the advice, support, and humor here. Just putting a name to this Horrific afflication has given me the strength to better fight it-BEAST, how appropriate!
I started having CH's in my 20's. and am now 46. My mother also had them, now she is 78, and tells me they dissappeared a few years ago
This most recent bout of mine came after a 3 yr. remission, and is going on wk 5. (as I remember, they generally only lasted 2 or 3 wks. in the past) More times than I can remember, I have been misdiagnosed with sinus and migraine and been given various meds which didn't help. Have been through the brain scans. One Dr. even told me he knew it was CH's, and to just stop drinking alcohol and quit smoking, and they'd go away. My experience with the medical field has made me reluctant to seek their help. Usually by the time I decide to make an appt, the cluster period is over.
I am using various self help measures, which I learned from all of you. Along with that, using cooling migraine patches to put on the back of my neck and forehead and couple of ice cubes in a plastic baggy wrapped in a washcloth pressed to my temple seems to take the gouging pain out of my eye sooner. I just started taking the magnesium suppliments, and melatonin. I would like to try the O2, but since it doesn't seem to help women as much as the guys, and it is expensive, I am holding off. I will sure be sure and have it by next cycle though.

Title: Re: New here
Post by E-Double on Jun 2^nd, 2006, 8:21am

Hello and sorry you are in pain.

Your story is so very familiar to many of us including myself.

It is very important to have the diagnosis so that you may seek treatment, however, there are plenty of things that you can do nonmedicinally to help.
It appears that you have learned several.

I do not know of any true statistic that demonstrates Oxygen being less effective for women and it is far from expensive compared to that of the chemicals.....medicine.

If you get a proper diagnosis oxygen should be made available to you depending on how "good" your insurance company is. If indeed they do put up a fight or suggest that you do not have pulminary issues therefore you can not have it, get a letter of necessity from doctor and present some research from this site!

In addition, I wouldn't wait until next cycle.
Not to scare you or anyone but I was sure that my "cycle" would only last about 3-4 weeks. I like you went MANY years misdiagnosed and without proper treatment and then was diagnosed in June 2004.....That 3-4 week cycle has not finished and is now over 2 years long.

GET DIAGNOSED! GET OXYGEN!!!!!

Good luck!

Eric

Title: Re: New here
Post by lionsound on Jun 2^nd, 2006, 9:09am

Hi Julie,

i'm a girl and O2 works for me :). It's all I can use right now. My insurance covers it. Like Eric said above... If it didn't, it's still cheaper than meds.

Please get yourself to a knowledgeable neurologist. Don't wait. You are worth it! We are not doctors, but we can help you gather info and support you when you go to see one.

Be well and Pain Free!
-lionsound

Title: Re: New here
Post by Bob_Johnson on Jun 2^nd, 2006, 9:25am

While a goodly % of docs still do not have much training or experience treating headache, the picture is improving. Asking questions of a doctor re. experience, etc. is appropriate before making an appointment. Some ideas:

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3. Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. http://www.achenet.org/physicians/ On-line screen to find a physician.

5. http://www.headaches.org/consumer/index.html Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.
---
The picture is much improved re. variety of effective meds even compared to 10-years ago. You need an experienced doc to guide you.

Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)

http://www.brightok.net/~mnjday/chtherapy.pdf

Title: Re: New here
Post by julieknfla on Jun 2^nd, 2006, 12:11pm

Thanks for the quick response-you guys are awesome!
Eric, I will definitely take your advice about getting help NOW. I am sure with the resources you gave me, Bob I will finally be able to find a competent physician.
Lionsound, I had read that a lower percentage of females Vs. males said that 02 aborted their attacks, so I am glad you have success. I surely will too, if I can get it.
Anyways you guys have made it alot easier for me, Thank You & Best wishes for you all.
[smiley=thumbsup.gif]

Title: Re: New here
Post by marlinsfan on Jun 2^nd, 2006, 3:28pm

Welcome, Julie. I'm a couple of hundred miles south of you (Hollywood), but can refer you to a GREAT neuro and O2 supply place if you can't find them in your area.

PF wishes.

Title: Re: New here
Post by julieknfla on Jun 3^rd, 2006, 6:03pm

The 1-800 number is not working, maybe they changed it. The Dr's recommended on the other site are all pretty far from me.
I called a local neuro office, and they told me to call back Monday, and they would squeeze me in. They said they treat cluster headache patients, and realize I need help SOON! It will be no too soon enough for me-had another real killer last night, and getting pretty exhausted. I Don't know how you chronics take it!
If I don't get relief from this Dr. I'll drive the 200 miles, Marlinfan.
I'll let you know how it goes.

Title: Re: New here
Post by marlinsfan on Jun 4^th, 2006, 7:32am

on 06/03/06 at 18:03:29, julieknfla wrote:

I called a local neuro office, and they told me to call back Monday, and they would squeeze me in. They said they treat cluster headache patients, and realize I need help SOON!

That's a good sign! If that doesn't work out, here's the info for my neuro:

Dr. Mayur Maniar
Sunrise Medical Group
Neurologist
4925 Sheridan Street, #200
Hollywood, FL 33021
(954) 981-3850

Title: Re: New here
Post by julieknfla on Jun 6^th, 2006, 4:10pm

Just a follow-up, The neuro was very understanding and knowledgable, he told me if the first plan of treatment we chose was not successful, there were others to try. He took into consideration my wish not to be on meds, long term, in the event I would end up with chronic CH's.
We chose to start with the Nasal lidocaine drops (which really seems to take the edge off for me-worked within about 5 minutes.) I am on a prednisone taper for three weeks, and just got my script filled for the 02, which really pleases me. ;;D
The insurance will not cover O2 for my "diagnosis" I shopped around and found a company to rent the regulator for $50.00 a month, and provide as many full e-tanks for me as I want-at only $15.00 each.
Thanks for giving me the proverbial kick in the rump to get treatment. I can't believe I was just going to wait till the end of my current cycle for relief. :-[

Title: Re: New here
Post by Jonny on Jun 6^th, 2006, 4:23pm

on 06/06/06 at 16:10:19, julieknfla wrote:

I shopped around and found a company to rent the regulator for $50.00 a month

You can buy one on Ebay for half that. ;)

Title: Re: New here
Post by Linda_Howell on Jun 6^th, 2006, 4:42pm

Quote:

found a company to rent the regulator for $50.00 a month

:o :o :o Please don't do that. That is an outrageous amount and you don't have to rent anyway. I will contact Randy and have him come over to this thread... so hold off if you can.

The only reason I can think of that anyone would say that more men than women get relief from 02 is because their is a higher persentage of men getting these HA's. 02 works for me just fine.

Linda

Title: Re: New here
Post by Mr. Happy on Jun 6^th, 2006, 5:15pm

Heya Julie!

Lin called. Check your PM's, and we'll get you a regulator or two right quick.
And a Clustermasx (http://clustermasx.com), too.

No Huhu.
RJ

Title: Re: New here
Post by Linda_Howell on Jun 6^th, 2006, 5:50pm

Thanks Randy. You're a "man among men" ;)

Lin-da

Title: Re: New here
Post by Richr8 on Jun 7^th, 2006, 9:21pm

Welcome Julie! Sorry you had to find us but you are in good company now. It looks like you got some great advice and I don't have much to add other than to reaffirm the women and O2 myth. If it works for you, you will love it. I also do pred tapers (awful, aside from the fact that it works), so if you have any questions you can pm me. Actually I am going to try an alternative approach for my next cycle die to major side effects from the pred..

Title: Re: New here
Post by julieknfla on Jun 8^th, 2006, 1:53pm

Thanks, I TRULY appreciate you trying to save me $$$ on my O2, but I think for now I will stick with the medical oxygen. I DO have to rent the regulator for the 50 bucks a month to get the tanks, but I don't seem to be using as much as some of you. If I see I will be sucking alot, though, I will look into owning my own gear.
It works beautifully!! I have only used it one time, so I am not sure, but 8 L/min started relieving my pain after 5 min, and I took the advice in this forum to lower it to 6L/min for 5 min, then to 4L/min for a couple of minutes, I was PF and my headache didn't rebound. :o I did also use the lidocaine drops beforehand though.
Yeah, i'm not crazy about the prednisone, but I'm hoping it will help.

Title: Re: New here
Post by Linda_Howell on Jun 9^th, 2006, 11:17am

Julie,

I WAS talking medical oxygen. When I go to my 02 supplier to get a refill on my e-tanks, they do not ask me if I have a regulator...they just swap out my used tanks for filled ones. I guess I don't understand why you have to rent a regulator in order for them to supply you with tanks, but oh well.

4,6, or 8 lpm would do squat for the rest of us. Good luck to you. [smiley=huh.gif]

Linda

Title: Re: New here
Post by julieknfla on Jun 9^th, 2006, 2:38pm

OMG!! I have been blonde all my life, but this is the first time I feel like a DUMB BLONDE! [smiley=bag.gif]
Linda, you are absolutely right, I can swap out the tanks even if I have my own regulator!! I sure wasn't aware of that when I went to the O2 supplier. (I guess they seen me comin') They told me "you rent the regulator from us for $50 a month, and you can have the tanks filled at $15 each." After I read your post today, I called and asked specifically if I had to rent the reg. to get the tanks, they said no, I did not.
I will definitely get my own now, thank you for setting me straight, I appreciate not having to go broke to use the oxygen.
As a side note, the 6-8 L/min is what the Dr. said to use, my reg is only goes that high. I have been on the prednisone, and that may be why the lower flows worked for me. The last two nights, I actually didn't get a visit from the beast. I am sure the prednisone is working, and am thrilled to be PF!! I will be ready with a higher regulator in case they come back after the taper. I know I have SOOO much more to learn, and I am happy to be here where you all know what you're talking about
:-*
PFDAN to all, Julie

Title: Re: New here
Post by Richr8 on Jun 9^th, 2006, 4:45pm

Julie,

If you don't mind me asking, what taper schedule is your Dr. recommending for the prednisone?

Title: Re: New here
Post by Linda_Howell on Jun 9^th, 2006, 6:37pm

You do not have to feel like a dumb blonde. Everyone here, was new to all of this at one time. We're here to help you get through all the confusing stuff, so ask any questions you want and let us help you through it.

Linda

Title: Re: New here
Post by maffumatt on Jun 9^th, 2006, 8:32pm

welcome to the nut house, and stick around, there are alot of really great people here from all walks of life. We all share a sad commonality that brings us together to form a tight knit group. Even when we argue (and we do) if help is needed, you can rest assured there will be people here who will do their damnest to give it to you.
Matt

Title: Re: New here
Post by julieknfla on Jun 10^th, 2006, 6:21am

Rich, my prednisone dose is as follows:
I'm 130 lbs. (I guess it goes by weight)

10 mg tabs-
one week-1 tab 2X's a day-20 MG,
one week-1 tab 1X's a day-10 MG,
one week-1/2 tab a day 5 MG

I realize this is low compared to what some are taking , but it
SEEMS to be working, except for some slight shadows.

Julie

Title: Re: New here
Post by julieknfla on Jun 10^th, 2006, 6:32am

Matt, I sure am learning that!! I am sure you all know how it feels to be able to depend on the terrific support on this board! I am so glad I found you all, even if there does sometimes seem to be differences here every now and then. ;;D

Linda, Thanks for understanding and explaining about the tank rental thing more fully.
Julie

Title: Re: New here
Post by tanner on Jun 10^th, 2006, 10:52am

Hi Julie, It seems that you are getting all the help you need to get you started here so I will just introduce myself , Im Tim and say welcome to our world :)

Title: Re: New here
Post by Richr8 on Jun 10^th, 2006, 3:48pm

on 06/10/06 at 06:21:43, julieknfla wrote:

The lower the better actually. As long as it works the taper looks good. I usually srat at 60 mg and taper down over 3-5 weeks.

Title: Re: New here
Post by julieknfla on Jun 11^th, 2006, 7:08am

Hi Tim, Nice to know ya :) So many wonderful people here!

Rich, I am glad the prednisone dose is low, too. I'm not counting on it ALOT to help much once I taper down to the lower doses, but it sure is nice having a break, even if it doesn't break the cycle.
Julie

Title: Re: New here
Post by bpdertcdr on Jun 12^th, 2006, 1:03am

Welcome home Julie ... never hesitate to ask anyone ... anything.

Mike