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Topic: Diamond Headache Clinic ? (Read 1049 times) |
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NYRenee
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Diamond Headache Clinic ?
« on: Mar 26th, 2004, 12:56pm » |
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Has anyone had any experience with this clinic?
The reason I ask is because this is where my boyfriend's new neuro wants to refer him if he can't help him.
The problem for us is the DHC is in Chicago and 10 hours away from where we live in upstate New York, compared to going to the Jefferson Headache Center in Philly which is approximately 4 hours away, also I have family down near Philly so we would have a place to stay (we are financially strained right now...well were always financially strained)
We mentioned our problem financially and the neuro insisted that the DHC was the best. Basically he didn't want to hear "excuses" ...he was telling us if ya want to get better, than that's where he needs to go. No excuses... I'm thinking we should tell this doctor if he's willing to pay for lodging, food and rent us a reliable vehicle we would be more than happy to go. How ya'll think that would go over !!!
Anyway, if someone thinks that the DHC is really, really good, and the place to be referred to, then I guess William will have to borrow some money from his family and go to Chicago on his own, and just pray that he's able to drive the entire way without having to pull over for any extended period of time. But if ya'll think one clinic is as good as the other then I'll drive him to Philly, we'll stay with family, get home cooked meals etc.
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Virginia
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Re: Diamond Headache Clinic ?
« Reply #1 on: Mar 26th, 2004, 1:44pm » |
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I don't have first-hand experience with Diamond, but I know others here have.
Have you checked out the clinic in Philly to find out what their experience is with Clusters?
I would hesitate telling you to borrow money to go to the Diamond clinic if you can get the same level of care closer to home.
Hopefully, someone who's been there will respond. You may want to search the archives for Diamond because I know it's been brought up here several times.
Good luck to you & your boyfriend.
Virginia
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The Clusterhead formerly known as 9erfan.
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Luke63
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Re: Diamond Headache Clinic ?
« Reply #2 on: Mar 26th, 2004, 2:01pm » |
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You might already know this but...they have a website...research it a bit....Im pretty sure it's
diamondheadache.com. And Ive heard that they are the top and foremost for these things. Luke
U could stop in Pittsburgh and stay a night or 2 at my place if ya need to.... 
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cootie
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Re: Diamond Headache Clinic ?
« Reply #3 on: Mar 26th, 2004, 2:28pm » |
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Isn't it 'cat' that knows alot about that place......if I am correct I think she mite be able to help you. Pam with no knowledge other then that
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FZfan
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Re: Diamond Headache Clinic ?
« Reply #4 on: Mar 26th, 2004, 7:03pm » |
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My father went there back in the eighties. He hated it!
But that was a long time ago.
My personal opinion is there is probably more knowledge about CH here on this board than there is at Diamond. If it was paid for, I'd probably go to diamond, but if I had to pay for it, I'd just find another doc close to me who would work with me. They're out there, but they are few and far between.
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Woobie
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Re: Diamond Headache Clinic ?
« Reply #5 on: Mar 26th, 2004, 7:10pm » |
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Well, I asked a while back too - and this is what I got...
"The people on this website know more about clusters than those people at Diamond Headache Clinic. Keep your $20,000 and buy a new computer."
Hope this helps.
Tina
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Mr. Happy
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Re: Diamond Headache Clinic ?
« Reply #6 on: Mar 27th, 2004, 1:23am » |
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on Mar 26th, 2004, 7:10pm, Woobie wrote:
No 1st hand knowlege here......but know several that have been there. Open your wallet and cough. Make it a last "resort."
Ruff Diamonds,
RJ
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randal
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Re: Diamond Headache Clinic ?
« Reply #7 on: Mar 27th, 2004, 5:33am » |
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This is randal and I have been away for awhile and guess where I have been. Yes Diamond headache clinic!!
I just signed on and was going to tell my story odf the last two weeks and buy chance a post of the very subject I was going to write about. As you know in my previous posts I was getting desperate and needed some help.
I was in the longest cycle I have ever had and was getting parinoid about turning chronic after a 10 weel cycle.I went to Diamond Headache clinic for a appoitment
I had set up earlier. After 2 hours of speaking to the doctor (1 of 5 ) that was assigned to me it was ovious he saw I was a hurting pretty bad and needed help. He told me I was being put in there hospital for a 9 day stay. They have the 9th floor of St. Joseph hospital for migrane inpatient care.
There where only 3 CH patients out of 45 Cronic Migrane patients in the whole wing. He told me that it was rare for him to have CH sufferers since not many go to this clinic. Anyway, Seymore Diamond the founder has this treatment that only 2 places in the world use.
This medicine is not FDA approved but apparently he has permision from the feds to use this stuff.
It's called "HISTAMINE" and they use it just for CH sufferers. It's givin buy IV and the magic number is 21 Saline bags with this medication and givin over a nine day period. WoW I cant even begin to tell you how great I feel know. They say I should have at least a 3 year break from going into anouther cycle. Of course I wont cross my fingers because nothing is for sure. I could go on and on about what they do for you but let me just say they are fucking magicians. But this web site ( ch.com )is still the number one place to find out information and get support. You people are wonderful and I really missed not being able to get online this last two weeks. I just prey it works for now and time will tell.
Thanks Randal
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cootie
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Re: Diamond Headache Clinic ?
« Reply #8 on: Mar 27th, 2004, 1:02pm » |
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WOW....I like hereing GOOD 'seems to be so far' success stories.......!!! Now isn't histamine (per say) what your body produces when allergen's come in to play......and that is what causes allergy effects we get like sneezeing and watery eyes ect ect ect.....so we take antihistamine to block that chemical from bein relased into our bodies causeing the miserable allergy symptoms ??? I am no expert and I know nothing for sure.....but jus curious. Really interesting if that is what they are useing. Did any of this make sense.....if not forget you read this Pam
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FZfan
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Re: Diamond Headache Clinic ?
« Reply #9 on: Mar 27th, 2004, 1:20pm » |
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Thanks Randall, that's the first real positive experience I've read from a CH sufferer that went to Diamond. Like I said, my dad hated it, but they were the first to actually diagnose him correctly back in the early 80's, and there wasn't a lot known about them back then.
My doc prescribed a liquid a few years back called the Diamond Headache Elixer. One of its ingredients is a powerful histamine. I was supposed to drink two ounces of the stuff at the onset of h/a and then breath o2.
The only real difference I noticed between drinking this stuff b4 hitting the o2, and just hitting the o2 only, is the h/a vanished completely more often and usually within 5-7 minutes.
But it tastes horrible, worse than nyquil, and the side effect was hours of sleeplessness. Plus it's quite expensive - about 50 bucks for enough for maybe 6 h/a's. I gave up on it mostly for those reasons.
On the scale for effective meds for CH, I would give it about a 5 - some benefit but not enough to cause me to add it to my arsenal. But I note with interest the connection to the histamine treatment you mentioned. Was there any discussion of this elixer when you were there?
I'm so glad this has apparently worked for you. Hope you get the full 3 years and then some.
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Jackie
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Re: Diamond Headache Clinic ?
« Reply #10 on: Mar 27th, 2004, 1:29pm » |
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Well.....I've been quiet but can't be any longer.
Blake had their "histamine IV treatment" almost 13 years ago. We were desperate and willing to try anything. I'll just tell you it cost almost $25,000.00 and did nothing for him. After being home a few days the HAs were back stronger and meaner than ever.
As we think back on it we feel like fools.....having bags of this 'stuff' pumped into his body and the FDA hasn't even approved it. How they manage to use this treatment is beyond me. To my knowledge they are the only ones using it......go figure. I will give them one thing....apparently they are great marketers.
Check out their web site....what can you find about their treatment of clusterheadaches? I couldn't find anything.
My advice would be to seek out a qualified treament center....they are out there. The "Bank of Diamond" is very archaic in their treatment of clusterheadaches. This is not only my opinion but the opinion of 'qualified' doctors and researchers.
Randal.....I'm thrilled for you and I sincerely mean that.
Jackie
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jonny
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Re: Diamond Headache Clinic ?
« Reply #11 on: Mar 27th, 2004, 1:35pm » |
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on Mar 27th, 2004, 5:33am, randal wrote:| They say I should have at least a 3 year break from going into anouther cycle. |
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I guess if you pay them enough they will tell you anything.
Randal, Im glad your PF and I hope you never have another CH....Good for you, Bro!
..........................jonny
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Lizzie2
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Re: Diamond Headache Clinic ?
« Reply #12 on: Mar 27th, 2004, 4:07pm » |
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I haven't always heard the most positive of things coming out of Diamond, but that's just me. That and MHNI tend to be "headache factories."
I used to go to Jefferson, and to be honest, for the most part it was a good experience...till I got CH. And then they missed that diagnosis, and wanted to try some very strange and unconventional treatments that there was no way I was willing to do. I might not have had a headache, but I wouldn't have had a life either. Other people on this site have had good experiences there with the same doctor who I didn't like very much. If I had to, I would choose Jefferson over Diamond and MHNI, though. It isn't quite the "factory" yet...
I currently go to Dr. James Rogers and Dr. Michael Gallagher at UMDNJ's University Headache Center. You might want to look into that because it is in Moorestown, NJ...right outside of Philly. Probably would only take me about 20 minutes to get there from center city if there wasn't too much traffic. Dr. Mueller at that clinic specializes in treating CH.
Just a thought!!
Lizz
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fubar
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Re: Diamond Headache Clinic ?
« Reply #13 on: Mar 27th, 2004, 5:22pm » |
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$25,000 and it didn't even work at all? Oh my God that would make me sick sick sick.
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Pinkfloyd
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Re: Diamond Headache Clinic ?
« Reply #14 on: Mar 27th, 2004, 5:43pm » |
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Since most of the people here still either suffer from clusters or live with someone that is still suffering with clusters, odds are you aren't going to hear many "success" stories from anywhere.
Just like very other clinic, there are success stories and failures. Some of each (successes and failures) just take longer or cost more than others.
To clear up a few things..
There aren't too many clinics in the US that see as many or more, cluster patients than Diamond. Dr. Kudrow's out in Encino is one that comes to mind.
They are as current on treatments as anyone else and most of the treatments we use today for clusters, went through trials that Diamond was involved in.
Kudrow and Diamond's names will appear on a large percentge of clinical trials on cluster medications over the last half century.
The fact that they see so many patients each year (last I heard was 10,000), it does seem like a cattle call sometimes.
The fact they that they are so expensive, any failure on top of a high bill seems like a slap in the face.
I had two successful histamine treatments that ran about 25 grand each. I don't remember bitching about the cost. 
The last treatment cost almost 35 grand (20% of that my cost) and was a complete failure. I seem to remember complaining about that one.
There is no histamine in the Diamond Headache Elixor. That would fly in the face of the histamine treatment theory.
Histamine does not need FDA approval for the same reasons melatonin doesn't need FDA approvals.
Considering that the Mayo Clinic referred me to Diamond, they do have a good reputation in the medical profession. (if that is a good thing or a bad thing in your opinion)
Someone here not too long ago referred to Merle Diamond as a he and as the founder of Diamond Headache Clinic.
Merle is a she and is Seymour Diamond's daughter. Seymour is the old guy that founded the clinic.
Many of the headache specialists that people here see, have either trained at or began their careers at Diamond. (that may be a sign of good things or bad things, depending on your view of your current specialist
The theory behind the histamine treatment (which was very exciting and hopeful when it began years ago but has fallen out of favor in many circles) is this:
Histamine levels in cluster patients is very high. This is why so many of us end up taking large amounts of antihistamines to treat our clusters before we even know what we have. They seem to work for a while to some extent and as time goes on, we keep taking more trying to stay ahead of the game.
The Histamine IV drip is a very low concentration of histamine in saline solution. The theory is that the histamine we produce causes the blood vessels to become irritated, swell, cause pain. The constant dose of histamine is supposed to desensitise the blood vessels to the histamine. Sort of like eating snails. If you eat a whole bunch of them once a year, they don't go down very well. If you eat a small one every day, you'll get used to it and if you someday have to eat a big plate of them, it won't bother you. (although I don't think I could even eat the first one)
(substandard weekend analogy)
This desensitisation does work for many people. I have not only seen it help dozens of people but I was helped a couple of times out of very bad cycles.
They usually send you home then with a rather extensive array of preventative medications to keep the cycle in check. The histamine "should" calm down the cycle enough so that the prevents will be enough to actually prevent the clusters.
Sometimes it works, sometimes it doesn't.
People either love or hate their doctors. I'll guarantee that the one you love, is hated by someone else. Another nature of the beast.
Good luck to everyone, no matter where you go or whom you see.
PF
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Jackie
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Re: Diamond Headache Clinic ?
« Reply #15 on: Mar 27th, 2004, 6:59pm » |
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Pinkfloyd,
Do you know of any other clinics, hospitals, etc. using the histamine IV treatment.....just curious.
We had a script filled for the Diamond Headache Elixor. I was told at our pharmacy that it was souped up Tylenol.
I'm sure Diamond HAS seen thousands of clusterheads....they've been in the 'business' for years.
Jacks 
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randal
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Re: Diamond Headache Clinic ?
« Reply #16 on: Mar 27th, 2004, 7:08pm » |
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After suffering for so many years as most of us do I was ready to call it Quits. So I took a chance and it's going to cost me a big fucking penny. But if the feeling that I have now lasts only a year I will call it a success. I am tired of these idiot doctors around here not Letting me have the treatment I need. I would tell them what I learned from this site and from the O.U.C.H. site concerning medications and treatments and all I got was No Randy I don’t think that's going to work for you.
I no one thing I learned regardless if the treatment works for me or anyone that Doctor Diamond was the front runner for Migraine headaches when at the time most Doctors thought it was just a Psych Problem and not an actual Pain that many people suffered. All I no is what I experienced and I hope it works. I might be sounding a little selfish but dam I cant take it no more. I still think this sight is the number one place for information and will continue to be a part of it.
Randal
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Mr. Happy
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Re: Diamond Headache Clinic ?
« Reply #17 on: Mar 27th, 2004, 7:22pm » |
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on Mar 27th, 2004, 7:08pm, randal wrote:| at the time most Doctors thought it was just a Psych Problem and not an actual Pain that many people suffered. |
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Bzzzzzzzzzzt. Incorrect answer. Incorrect doctors. Incorrect diagnosis. Incorrect treatment protocols. Incorrect spell checking.
It was all so easy for me. I just don't get it.
Try, try again,
RJ
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Pinkfloyd
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Re: Diamond Headache Clinic ?
« Reply #18 on: Mar 28th, 2004, 12:27am » |
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on Mar 27th, 2004, 6:59pm, Jackie wrote:Pinkfloyd,
Do you know of any other clinics, hospitals, etc. using the histamine IV treatment.....just curious.
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No I don't. I believe Diamond is the only place. It does require a lengthy stay in-hospital (depends on how fast you can get through the bags) and most clinics that would put you in for that long will have their own treatment theories. DHE drip, magnesium infusion etc.
on Mar 27th, 2004, 6:59pm, Jackie wrote:
We had a script filled for the Diamond Headache Elixor. I was told at our pharmacy that it was souped up Tylenol.
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It's more than that, but close. Probably fairly effective for tension headaches and some migraine varients. It's formulated to act quickly. For that reason it might even help with a couple of the symptoms of clusters.
Not anything that anyone would/should be sent home with to treat clusters by itself.
on Mar 27th, 2004, 6:59pm, Jackie wrote:
I'm sure Diamond HAS seen thousands of clusterheads....they've been in the 'business' for years.
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Yes they have.
PF
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NYRenee
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Re: Diamond Headache Clinic ?
« Reply #19 on: Mar 30th, 2004, 10:54am » |
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Thanks for all your input on this subject....$20 - 25K???? Well I hope we win the freak'n lottery! If paying that exorbitant amount doesn't give someone a cluster I don't know what would. I will relay the info to my boyfriend, and he can make the final determination....but I know what he's going to say and it won't be pretty !! I pity the fool that suggests him going there....oh well? Keep on keep'n on....
My thoughts and prayers are with you all !
Renee
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