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New Here (Read 2024 times)

rar

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New Here
Nov 3^rd, 2008 at 11:13pm

Hi All,

I don't know if this is the right place for me. I've been diagnosed as episodic and I'm experiencing my first outbreak in 3 years.

There seems to be a magic date for me of October 30th. Like I said three years without a problem, but the previous seven years--like this year--it always started on 10/30. Is that normal for it start on the exact same date year after year?

I'm only a couple days in, so it’s manageable right now. But I'm scared to death about the next 7 or 8 weeks.

I'm taking the day off tomorrow to go to Urgent Care to get some medication. That's always hit and miss; last time I went in I was prescribed Verapamil and beta blockers for prevention with Vicoden for the pain.

Have things changed in the past 3 years? Any insight into what I can tell the doctor about what is most efficacious would be appreciated.

RR

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CH-HELL

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Re: New Here
Reply #1 - Nov 3^rd, 2008 at 11:39pm

Welcome, when you go to the doc tomorrow try to print out as much info off this site as you can most urgent care doc's dont know how to treat ch. Verapamil is a good preventive but Vicoden is no good for ch it may dull the pain but normally triggers a nasty rebound, try to get some o2 for an abortive and Imitrex injections. Good luck tomorrow make sure you keep reading here and the links to the left print out what you can to bring with.
Phil Cool

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rar CH.com Newbie Offline I Love CH.com! Posts: 6	Re: New Here Reply #2 - Nov 3^rd, 2008 at 11:47pm Phil, Thanks for the welcome and the advice--I appreciate both more than you can know. Ron
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Just Plain Carl

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IT IS WHAT IT IS

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Royal Oak, Michigan
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Re: New Here
Reply #3 - Nov 3^rd, 2008 at 11:49pm

Welcome to the group RR. Yes you absolutely belong here.

At the beginning of a cycle I take Prednizone for 10 days along with Verapamil for the duration. I started using the oxygen about a week ago and foud that it works fantastic as an abortive. Knocks it out in about 10 minutes.

I have used vicoden and some other pain killers with little or no results.

Like Phil said, get all the info you can from this site to go over with your Dr.

Good Luck To YA
JPC

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ClusterChuck

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The BEAST rises again,
and again, and again,
and .

Posts: 5394
Greenville, North Carolina
Gender: male

Re: New Here
Reply #4 - Nov 3^rd, 2008 at 11:54pm

rar wrote on Nov 3^rd, 2008 at 11:13pm:

I don't know if this is the right place for me. I've been diagnosed as episodic and I'm experiencing my first outbreak in 3 years.

YUP! You are in the right spot!
Sorry you have to be here, but glad you found us. And this is JUST the right spot to introduce yourself! Welcome to the ~~nut house~~ family! There are one or two of us that are nice ... The rest ... Oh well ... Every family has to deal with "that" type! LOL! (Just kidding, most are GREAT people!)

rar wrote on Nov 3^rd, 2008 at 11:13pm:

Is that normal for it start on the exact same date year after year?

For some, it is normal, but for others, NO ... I guess what I am trying to say, is that there is almost NO normal with this affliction. Yes there are general guide lines, but most have a lot of flexibility.

rar wrote on Nov 3^rd, 2008 at 11:13pm:

I was prescribed Verapamil and beta blockers for prevention with Vicoden for the pain.

Verapamil is a good start, but you might want to ask them to put you on a prednesone taper pack, along with it. The reasoning is that verapamil takes a week or two to get into your system enough to work. The prednesone starts up almost right away, but is dangerous to take for any length of time. So while the verapamil is ramping up, the prednesone works in the mean time. BUT, it does not work for everyone. Unfortunately, it is trial and error. Verapamil and prednesone is probably the most common starting point, and works for many.

I STRONGLY suggest you lay off the vicoden! It is a narcotic, that has marginal success in killing a cluster hit. AND it is highly addictive! PLEASE refrain from its use!

The verapamil and prednesone are preventatives, meaning they try to prevent you from having any hits. The vicoden is an abortive, which means it trys to abort a hit, once it starts. The preferred two abortives are 100% oxygen, and second, Imitrex injections.

I have been called an "oxygen pusher" and I guess that is true. 100% oxygen, at at least 15LPM (liter per minute) with a non-rebreathing mask is the safest, cheapest, and most effective abortive we have found. It is the one thing that has given me, and most of us, a semi-normal life. If you were to go to the medications section of this web site, and read the two threads up there about oxygen, it should answer most of your questions. If not, PLEASE ask them!

The second, and fall back abortive, most of us use, is Imitrex auto injectors. Don't let them talk you into the pills, as they take too long to abort a hit. The auto injector works in 5 to 10 minutes. There is also a nasal spray that some use, with almost equal speed efficiency. Imitrex DOES have some side effects that some have trouble dealing with, and it is VERY expensive.

Some over the counter remedies that some have had luck with is any energy drink with caffine and taurine in it, like Red Bull. Chug that sucker down at the first sign of a hit.

Ice or heat on your head or neck helps a lot of people. Trial and error on that as to whether to use heat or cold (a bag of frozen peas works best for me) and where to put it.

I am sure that others will jump in to suggest things also.

Welcome to the group, and PLEASE, ask any questions that you may have, and read READ READ. There is a ton of information here!

Chuck

CAUTION: Do NOT smoke when using or around oxygen. Oxygen can permeate your clothing or bedding. Wait, before lighting cigarette or flame.

Keep fire extinguisher available, and charged.

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rar CH.com Newbie Offline I Love CH.com! Posts: 6	Re: New Here Reply #5 - Nov 4^th, 2008 at 4:03am Thanks everyone. You've given me a lot of great advice and a ton of homework to get me going. Now if only I could get to sleep.
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ClusterChuck CH.com Alumnus Offline The BEAST rises again, and again, and again, and . Posts: 5394 Greenville, North Carolina Gender:	Re: New Here Reply #6 - Nov 4^th, 2008 at 4:25am rar wrote on Nov 4^th, 2008 at 4:03am: Now if only I could get to sleep. SLEEP? What is that? Some sort of new drug? A new snack food? I know I am old and senile, but I just can't remember what that is. It seems to me that I have heard of it, at some point ... Hmmm .... Chuck the cranky one
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BarbaraD

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Hugs to ya

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Douglasville, TX
Gender: female

Re: New Here
Reply #7 - Nov 4^th, 2008 at 8:06am

Chuck gave you some great advice (and I don't say anything nice about him if I can help it

) Listen to him (especially about the O2 - I'm an O2 pusher also - it works!!! for about 70% of us).

Sleep -- Melatonin taken before bedtime ( 9-12mg) will "sometimes" help you get the rest at night that you'll need to get you thru the day. I swear by it (for about the last 10 years or so). It gets you thru the REM sleep (where the headaches usually hit). It keeps me sane.

I'm seconding the opinion about the Vicodin - NO NO NO!! It only causes rebounds and is not a recommended drug for CH. Imitrex or Cafergot (vaso-constrictors) are the recommended aborts. Red Bull at the first sign of a hit and O2 (a lot of time just the O2 or the O2 and Red Bull will abort a hit without any drugs).

The preventatives vary with each of us (trial and error). I love frozen peas. But sometimes a hot shower helps also.

About the Oct 30th date -- who knows? The BEAST just picks his own time - we've never figured him out. Chuckles and I are chronic so we just go with the flow. Back many moons ago when I was episodic I'd get hit in the spring and fall, but can't remember the dates (I'm OLD), so I'm no help there at all.

READ READ READ. There's a world of info on this board and we're all here to help all we can. Welcome to the family...

Hugs BD

What don't kill ya, Makes ya stronger!

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Bob Johnson

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"Only the educated are
free." -Epictetus

Posts: 5965
Kennett Square, PA (USA)
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Re: New Here
Reply #8 - Nov 4^th, 2008 at 10:05am

Urgent Care, etc. are sites where you are very unlikely to find skill in treating Cluster. If possible, use a good specialist:

LOCATING HEADACHE SPECIALIST

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. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Look for "Physician Finder" search box. 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.
=================
In any case, print this article and share with any physician you see:

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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)
================
Michigan Headache & Neurological Institute for another list of treatments and other articles:

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Bob Johnson

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rar

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Re: New Here
Reply #9 - Nov 4^th, 2008 at 6:13pm

Hey All,

Just got back from my Urgent Care visit--what a huge and frustrating waste of time.

First I waited 2 and 1/2 hours to see a doc, and then when he finally came in he was clueless.

He told me I couldn't possibly have clusters because (1) they never occur on a single side but are always diffused across the skull (I'm a righty BTW) and (2) CH never lasts for more than 1 day.

He didn't even look at my chart to verify the several year old diagnosis by a neurologist.

He told me to just tough it out and head to the ER if it got unbearable. Oh, he did call in another Vicodin script even though I told him I didn't want it.

He wanted to give me an Imitrex injection in the office but I told him I wasn't having an attack at the time and it wasn't due to hit for another 3 hours.

After a lot of convincing he wrote a script for Imitrex, but when I got to the pharmacy I was told it wasn't covered and it would be $540.

So I lost a day's work, spent a good part of the day in a horrible place, and get to spend night 6 alone. Angry

How is it that you good people know more about this and care more for those that suffer from it than a trained MD?

I don't get it...

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Skyhawk5

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Posts: 1320
Ypsilanti, Mi. USA
Gender: male

Re: New Here
Reply #10 - Nov 4^th, 2008 at 7:02pm

Maybe one more person telling you that OXYGEN works to abort up to 90% of CH attacks for 70% of us will make the point. I have been using Oxygen for 20 years with great success. I would not trade it for any other med.....

You only use the oxygen (O2) to abort the CH attacks. It is the safest and least side effects of all treatments. Only you can make the choice.

Good Luck, Don

Though I walk through the valley of the shadow of the Beast , I have O2 so I fear him not.

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MrsT

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San Diego, CA
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Re: New Here
Reply #11 - Nov 4^th, 2008 at 7:15pm

So sorry to hear this, rar. I've read many many stories of clueless doctors (including neurologists). I seriously hope you'll find a good neuro VERY soon to deal with this insanity. Working with a good neuro to find the best med combo will save your life.

I didn't realize how lucky I was, to have a GP in the 80's, a young pregnant GP who looked up my symptoms and diagnosed me in FIVE MINUTES. No extensive testing, no useless trial of meds with side effects. I almost feel guilty about it. Of course later the very first neuro I was seen by confirmed it immediately. Urgent Care has been clueless too, but the doctor never argued with me either to write me necessary Rx's.

Yes, Imitrex is very expensive. But now that you have the prescription, try Canadian pharmacies and get generic pills to get you by. Pills naturally don't work near as fast as injections (Imitrex is VERY bioUNavailable orally), but they still work very well with some of us.

My neuro insisted on my very first Imitrex injection administered under care, either by her office (half an hour away) or in Urgent Care (3 minutes from home). So I first checked how crowded Urgent Care was, induced an attack, ran to the Urgent Care, slammed my Rx, and explained the situation to get the first shot by a nurse ASAP.

Were you originally diagnosed by a neurologist? If so, don't put up with the waiting period that a receptionist tells you but insist that the message is left for your neuro. Mine has gotten me in very quickly every time, knowing CH patients need to start medications immediately.

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rar

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Re: New Here
Reply #12 - Nov 4^th, 2008 at 7:40pm

Where to start? There are too many of you to thank!!

It's pretty amazing--not to mention completely overwhelming--that you all took the time to respond to me. I've read every word and taken it to heart. Thank you so much for your time and concern.

I just need to make it through the next few weeks until I can see my primary again. She's very good and will get it staightened out for me I'm sure. Just need to get there...

Thank you for the suppport. I've been episodic for 10 years. It used to be twice a year, then only once a year, and then a 3 year hiatus. I thought I was done. But here we go again...

In the past I never told anyone and just toughed it out. This time I thought it might be good to share it with my closest friends and family. That hasn't turned out so well. They've all taken the attitude that I need to stop crying and just man up.

Anyway..I'm so glad you guys are out there...

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jon019

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USA
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Re: New Here
Reply #13 - Nov 4^th, 2008 at 8:23pm

MrsT wrote on Nov 4^th, 2008 at 7:15pm:

Were you originally diagnosed by a neurologist? If so, don't put up with the waiting period that a receptionist tells you but insist that the message is left for your neuro. Mine has gotten me in very quickly every time, knowing CH patients need to start medications immediately.

Hi Rar,

Not much to add to what these good folks have already said...I've been where you are...don't know about you but there were not just a few tears when I found ch.com...

Do want to emphasize my whole hearted agreement with the above quote, for you, and anyone else listening. I go to a specialized headache clinic in Seattle. Normal wait for an appt can be 6-8 weeks. If you tell them you are a cluster headache patient, in cycle, amazing doors open. Some neuros get it! Mine said to use those magic words and she would fit me in. The staff knows it too, they have gone above and beyond more than a few times...

Best,

Jon

The LARGE print giveth....and the small print taketh away. Tom Waits

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GrandPotentate

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mmmmmmmmmm

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Michigan City, IN USA
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Re: New Here
Reply #14 - Nov 4^th, 2008 at 10:17pm

Oxygen has been very very good....to me.

I hate to hear this story, and many of us have lived through it like you. I lived in a town where I was referred to an arrogant, non-listening neuro pushing a lot of useless (but entertaining) dope. My GP there finally did a little reading, suggested we try O2, and it was heaven!

I since moved, now have a nincompoop GP, but finally got referred to a neuro who seems well versed.

The only thing I can say in the docs' defense is that we are rare folks, and they won't meet one of us very often in their career.

I'm a springtime guy, usually beginning late April. Weird. If I don't have anything major by mid-may, I can celebrate that I am getting a year off. Weird.

You didn't mention where you live. Besides the lists noted above, you might ask here if someone knows a good doc nearby.

I hope your hits will be mild and your cycle short.

Jon

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