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DIDN'T WANT TO POST THIS. (Read 5448 times)

CH-HELL

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DIDN'T WANT TO POST THIS.
Sep 19^th, 2008 at 11:14am

Hi to everyone, I went to the pain clinic yesterday. I know most of us have been upset with doctors, but I am so pissed an sick of seeing different doctors, with no results. I went there for my chronic CH's and they want to give me cortisone shots in my neck for a slipped disc that doesn't even bother me, they had no clue. I think I will stick with my GP he will do any thing for me, and with the help of everyone here I think I know what needs to be done. I am going to buy a new regulator for my o2 today and call my GP to see how to tapper off my other meds. I am sure I will have to rant more latter but for know I am done. I hope everyone is pf and having better days and nights than me. Thanks for being there, Phil

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Re: DIDN'T WANT TO POST THIS.
Reply #1 - Sep 19^th, 2008 at 11:23am

as you know phil i understand, i was pretty pissed myself at the bad posture deal.
i am so glad to have the GP and neuro specialist i have, i feel blessed in that area. I am a firm belever in firing the dr that is either corrupt,ignorant, or has a god complex.
so can their a%#$%. you derserve the care you need so keep searching. the ouch website has a list of ch friendly dr's. just an idea cause it worked for me (thanks ouch).

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: DIDN'T WANT TO POST THIS. Reply #2 - Sep 19^th, 2008 at 11:24am Most of us have been where you are now, it can be such a frustrating road. Hopefully with a good high flow regulator you can keep beating the beast into submission. Keeping you in my thoughts and prayers, maybe we can catch you a remission soon. Guiseppi
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Bob Johnson

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Re: DIDN'T WANT TO POST THIS.
Reply #3 - Sep 19^th, 2008 at 1:36pm

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.

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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.

Bob Johnson

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CH-HELL

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Re: DIDN'T WANT TO POST THIS.
Reply #4 - Sep 19^th, 2008 at 2:30pm

Thanks everyone I no I am not alone and I do consider myself very lucky I was diagnosed with ch's 15 years ago after only suffering for a month, 2 am wake up call and a couple hits during the day. My hat goes off for the people that get misdiagnosed for years that one month I thought I was dieing tumor or some thing, but they said it was ch I had never heard of this before. They started me on verapimil and perd. they were gone with in two days, I still would get hit a few times a year but that was fine. Three years ago I started my fall cycle and they havn't left since. I keep trying new doctors now hoping for that magic cure again. I have a great GP and my neuro's are some of the best, but it pisses me off when they send me to a pain clinic that has never seen a ch suffer before. It was just a bad day the doctors didn't do anything, its a three hour drive and as soon as we left I was already mad then the tire blows out as soon as I get on the freeway. I'll keep looking for a cure and when I find it I will let everyone know Cheesy

Cheesy

Thanks for giving me some where to rant, Phil

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Bob Johnson

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Re: DIDN'T WANT TO POST THIS.
Reply #5 - Sep 19^th, 2008 at 2:42pm

"Great doctors" don't refer you to specialists who don't know what they are doing! Shared ignorance is no benefit to you.

Many of us have gone thru this experience and we have come to accept that we must be assertive in finding the skills we need, hence, my message on finding an experienced specialist. There is no "cure", only skill in helping you to gain control/relief/guidance.

Bob Johnson

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CH-HELL

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Re: DIDN'T WANT TO POST THIS.
Reply #6 - Sep 19^th, 2008 at 3:22pm

Agreed Bob sorry I should clarify most of the doctors I see are through the VA, with that being said some of the best doctors in the country are in Ann Arbor MI but when dealing with the VA it is hit or miss yesterday was a big miss the VA get students from U of M and only one attending on those days. Now the neuro's there are cylced through from the MHNI, and my GP is great in the area that he will do what ever I ask but I am the only CH suffer he sees. As far as a cure goes I was joking, even though I do keep my fingers cross for a cure some day for all of us out there dealing with this beast. Phil

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ClusterChuck

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Re: DIDN'T WANT TO POST THIS.
Reply #7 - Sep 19^th, 2008 at 4:37pm

Boy, Phil, do I know where you are at right now! I had the head of the neurology department at a TEACHING hospital, after admitting me, and witnessing many hits, tell me: "No one has the pain that you are pretending to have, without something showing up on the test results ..."

PRETENDING

to have?? ?? ??

But, back 30 years ago, I was too young and dumb to think to question what a DOCTOR said, after all, weren't they right next to being a God? SO, I was transfered to the nut house for three months, until they cured me (the cycle ended).

Now that I am older (MUCH older), when my doctor(s) suggest going to a specialist, I question why, what is to be accomplished by them, and what are their qualifications. In other words, convince me that it is worth my while to go to an XYZ specialist!

I think you are taking the right steps. Even though your doctor is "just" a GP, many times those are the ones that can do the most and best for us, as long as they are willing to listen and learn.

Good luck, buddy, and I hope you get the break that you deserve SOON!

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.

ClusterChuck

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Linda_Howell

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Re: DIDN'T WANT TO POST THIS.
Reply #8 - Sep 19^th, 2008 at 4:55pm

Phil, I said this to your wife in one of her other posts but I'll say it to you here.

If you want a 15lpm regulator I will send you one. I'm all out of the 25 lpm ones. If you'd rather try to go for the 25's and I don't blame you because they are better at aborting hits...you can buy them off e-bay. A lot cheaper that way also.

Linda

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CH-HELL

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Re: DIDN'T WANT TO POST THIS.
Reply #9 - Sep 19^th, 2008 at 10:13pm

I love this new family everyone is great. Linda and wish bone I am very greatfull you of your offers of the 15l reg. and I still may take you up on your offer, I wasn't able to get a 25l reg in town today and I dont have an ebay account. Its my moms birthday tommorow and she has an ebay account and hope I can get one then. Thanks love you all, Phil

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ReeseC

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Re: DIDN'T WANT TO POST THIS.
Reply #10 - Oct 2^nd, 2008 at 5:38pm

ClusterChuck wrote on Sep 19^th, 2008 at 4:37pm:

[size=16]

"No one has the pain that you are pretending to have, without something showing up on the test results ..."

Wow, that makes me so mad.

I found I also had to be careful with my words when letting my bosses know what was going on. I didn't want them to think I was being a hypochondriac, and just imagining the extreme pain. Yet, I didn't want to alarm them with the true extent of the pain, since that might get them to start thinking of ways to ease me off the payroll.

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Private Aye

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Re: DIDN'T WANT TO POST THIS.
Reply #11 - Oct 2^nd, 2008 at 6:18pm

Wow, that makes me so mad.

I found I also had to be careful with my words when letting my bosses know what was going on. I didn't want them to think I was being a hypochondriac, and just imagining the extreme pain. Yet, I didn't want to alarm them with the true extent of the pain, since that might get them to start thinking of ways to ease me off the payroll. [/quote]

I would love to change the name from "Cluster Headaches" to something much more descriptive of the reality of the intensity of the pain! My pharmacist's assistant shares our afflication and she calls them "Terminator Headaches"!

I feel the dismissal of true understanding every time I say anything with the word headache in the sentance.

Cindy

Cin2Chase

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CH-HELL

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Re: DIDN'T WANT TO POST THIS.
Reply #12 - Oct 2^nd, 2008 at 7:38pm

I had almost forgot about this post, I still dont want to post this I allways feel like I am whining but I truely am not Im just very upset.
Here's an update, I got my o2 reg 25lpm went through three tanks of oxygen with very minimal relief. I have mailed my o2 reg. to a fellow CHer who gets relief from o2.
I am getting desperate I have called my GP and emailed my Neuro, I have not heard anything from either one and its been over a week. They will both be fired if I dont hear from them tommorow!
I tried to stop taking my Imitrex so I could start doses of rc seeds, I went two days suffering from several kip 7 hits and today I got hit with a good kip 8 maybe 9 I rolled around for over a half hour and finally gave in to the pain and gave my self an Imi injection. Now Im just pissed I feel the days that I suffered where for nothing Angry

Angry

. I am not mad at anyone but myself. Its hard to see my wife suffer because of my pain.
I am thinking surgery is my only hope.
Love and pf prayers for everyone, Phil Smiley

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Skyhawk5

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Re: DIDN'T WANT TO POST THIS.
Reply #13 - Oct 3^rd, 2008 at 12:37am

Haven't been here for a bit, been getting slammed myself. My Neuro Dr. G Riess @ Greater Ann Arbor Neurology gave me my 1st ONB, occipital nerve block, today. Appears to have helped for now.

Have you tried Lithium (high dose), I've been thru nearly 40 meds over my 20 years of CH. 158lbs and currently taking Verapamil 480mg/dy, Lithium/600mg/dy, Zonegran/200/dy,Trazadone/100mg/bd. I sometimes take melatonin at bed not now.
For aborts I use the O2 and Stadol NS, Imitrex does not work for me. The Stadol does not abort the big guys only helps a bit. Stops the vomit.

The one sure abort for me is DHE, got a shot @ UofM ER this past Tuesday @ 5:30am that finally let me sleep after 55hrs of none and only 5hrs the 2 days before.

Are you aware of the Chelsea, Mi. Headpain Inpatient and Outpatient facility, afiliated with MHNI? I've been there and they are top of the line and known not just in the US but Worldwide. They're not UofM anymore though. My insurance doesn't cover it now.

I'm trying the DHE inhaler (migranol) once again but the Doc said one more big hit and I will get the home DHE IM Injections. Also the ER Doc put me back on the Pred and this always gives me a break and the Neuro is continuing a couple more weeks.

I sure hate this game but we all have our own fight and Gods Speed to us to find the correct road to what we are in need of. ,Don

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

Skyhawk5655

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Private Aye

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Re: DIDN'T WANT TO POST THIS.
Reply #14 - Oct 3^rd, 2008 at 1:10am

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11 drugs the FDA wants to warn us about.

At some point we have all reached the "whatever it takes to stop this pain........I'm in! Give it to me now!" conclusion. Take care and don't be pissed at yourself for doing what we have all done with CH. The truth is that everyone without CH are all wimps!!! not us lol

Cindy

Cin2Chase

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Skyhawk5

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Re: DIDN'T WANT TO POST THIS.
Reply #15 - Oct 3^rd, 2008 at 1:17am

My Doc has mentioned surgery to me several times. I'm episodic but a long clycle type that gets very desparate. Reading in depth about the surgerys available (most experimental, not covered insur.) I'm not yet convinced of them. During a K-10 though desparate thoughts prevail. I put off trying the ONB because low results for CH.

Phil, just hoping to give you some other things to look at. Hell the surgerys sound good to me at times. If they will for sure work!!?
For me when I start losing so much sleep it gets worse and worse. Got hit Sunday nite 11:30-1:45, K-10+, big vomiting, stadol didn't work.
It's an inhaler and I didn't take the safety cap off so I got no med. Too late. All Monday the "Afterburn from Hell K-7-9 all day, 26hrs.
went to ER.

Sorry this is about you not me. Maybe us all. ,Don

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

Skyhawk5655

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CH-HELL

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Re: DIDN'T WANT TO POST THIS.
Reply #16 - Oct 3^rd, 2008 at 3:12am

Don dont be sorry I am greatful for the comments it makes me feel not so alone. I have had ONB about four years ago it help for less than a month. I was getting the injections every 4 weeks so the first month I was happy, I started getting my CH hits just before my second round of shots and they didnt let up. After three months it seemed like my clusters were trying to jump to the other side of my head. My fourth injection I ask them to give me the shots in both sides, this didn't help and I think the doctor thought I was crazy Cheesy

Cheesy

I am not going to get any nerves cut I am leaning to getting a new surgery that stimulates the hypothingy. I'll keep every one updated if this happens.
Phil Smiley

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Brew Ex Member	Re: DIDN'T WANT TO POST THIS. Reply #17 - Oct 3^rd, 2008 at 7:00am Private Aye wrote on Oct 3^rd, 2008 at 1:10am: The truth is that everyone without CH are all wimps!!!
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BarbaraD

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Re: DIDN'T WANT TO POST THIS.
Reply #18 - Oct 3^rd, 2008 at 7:14am

The DHE given IV q8hrs will sometimes BREAK a cycle. I've done this over the years and it works. But it has to be given every 8 hours - not just one injection. It works fairly well given IM, but better IV.

If the neuro at the VA isn't doing the job, write a letter to the head of the neuro dept (you can get his/her name from patient advocate) requesting a new neuro (state your case and ask for someone who KNOWS something about CH). If you don't get results KEEP DOING this until you do -- you might want to CC: a Senator or Congressman - that usually speeds up the process.

Good luck.

Hugs BD

What don't kill ya, Makes ya stronger!

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Skyhawk5

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Re: DIDN'T WANT TO POST THIS.
Reply #19 - Oct 3^rd, 2008 at 10:58pm

I'm in peak cycle now and will try almost any thing. The ONB lasted for about 10hrs or so and while posting last night that ugly presence appeared again. Kept trying to sleep then hit the O2 which does help so at 8:30am I did a Migranol and went to sleep an hour or so later.
The pred doesn't help with this at all. Picked up some benydryl to try, but leary.

I made sure the Doc gave the ONB in both sides. Ecucation from CH.com. But he knew. If I would have gotten a month two times may cover the peak 45 to 60 days. Over the years the no. of K-10's are less than in the past (meds, speed to react, etc.???) but the ones that do get away are harder it seems. Then that afterburn of back to back, thankfully my O2 will bring it down for a while. Monday morning I used most of my O2 after the main hit and had the wife come home to get more cause the deliv was way to slow. Had only fumes left.

Looks like you are not getting good attention from the Doc. You need to get a little mad about it, not irate just mad. Makes me mad reading about it. Sure these things are rare but you are in front of him. , Don

« Last Edit: Oct 4^th, 2008 at 4:05am by Skyhawk5 »

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

Skyhawk5655

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