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Topic: Diamond Headache Clinic (Read 429 times) |
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jasckorohod
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I spent two weeks at the Diamond Headache Clinic in November 1997. I found it to be a complete waste of my time and my insurance company's money. I spent 15 minutes with the female Dr. Diamond upon admission and was not examined by a doctor again during my entire stay. Although I was given a booklet that listed a number of daily activities, the only one ever held was a weekly "Ask the Doctor" session, during which we were able to ask one of the staff doctors questions. The rest of my time was spent with the damn IV bag getting myself infused with histamines and going to the smoking room. One day, after I had been there about 2 weeks, the same Dr. Diamond walked by, saw me and said that since I wasn't wearing sunglasses indoors I must be better and I was discharged the next day (I later learned from my insurance company that Diamond was attempting to bill them for services that they were not entitled to and also charging more than agreed on). I was no better when I left than when I entered. The clinic, as far as I am concerned, is an over-rated money making machine for the Diamond family. I'd like to hear from others who have been there and have them share their experiences and opinions. Thanks.
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don
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Re: Diamond Headache Clinic
« Reply #1 on: Feb 24th, 2005, 7:41am » |
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Thats the report from 99% of CH sufferers.
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jasckorohod
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Re: Diamond Headache Clinic
« Reply #2 on: Feb 24th, 2005, 11:35am » |
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It is a good feeling to have my opinion validated, but I feel sorry for all of the CCH sufferers who keep getting referred to the place. Just one more Diamond Clinic story: at my suggestion, Dr. Diamond approved the use of cocaine drops (nasal) to try to ease my pain. After a week of using that and having taken several urine tests, I was visited by a drug and alcohol counselor. He asked me if I ever drank alone, to which I answered "yes" as I lived alone; he also asked me if I took any illegal drugs and I answered in the negative. He repeated that question and I gave him the same answer at which point he accused me of being an alcoholic (because I drank alone) and a lying cocaine addict because my urine tests came back positive for cocaine. I asked him if he had read my medical records before he came to interview me and he had not. I then told him that I had been prescribed cocaine by Dr. D. and told him to get the f**k out of my room and to read patients' medical records before doing an interview. He left with a very red face; I was laughing-that was the most theraputic experience that I had at the clinic.
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hubbydo
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Re: Diamond Headache Clinic
« Reply #3 on: Feb 24th, 2005, 5:12pm » |
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We went to the clinic in 2000 and it saved our lives. My hubby was in an "irretractable cluster" cycle that had kept him in the hospital for almost 2 weeks and in bed for another week going from a base line migraine into a cluster every 20 minutes or so, and then back to a migraine. the pain was constant for over 25 days/24 hrs a day--and no doc or neuro could help him at all. He couldn't even walk--kept falling down. Upon arrival to the clinic, they immediately gave him abortive meds and put them on the histamine treatment. He was up and walking around in 3 days, and was released a new man. I will sing it's praises for our situation--he still gets relief from them whenever we have to make the trip up there. So sorry that your experience was bad.
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jasckorohod
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Re: Diamond Headache Clinic
« Reply #4 on: Feb 24th, 2005, 9:06pm » |
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I'm happy that your husband got better. I've not heard of a migraine headache morphing into a cluster headache and then back again-I just had (have) chronic cluster headaches. You wrote that he goes back to the clinic-have his headaches returned after his initial treatment there? If so, how often, for how long and how many times has he had to return to the clinic (and if he does return as an in-patient, does he stay longer than he did when he was first admitted?); has your husband been able to continue working? Is he on any medication for his headaches? Sorry for asking so many questions, but', as I've written, I've not heard of a case like the one you described and would like to know more about it. Thank you.
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unsolved1
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Re: Diamond Headache Clinic
« Reply #5 on: Feb 24th, 2005, 11:36pm » |
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I've been to the clinic 2 times and Just got back. The first 2 times I did Histamine bought me about 5 weeks PF each time. Doesn't work so good now. Still having random clusters.
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jasckorohod
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Re: Diamond Headache Clinic
« Reply #6 on: Feb 25th, 2005, 12:06am » |
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When I was at the clinic I met many people who had had results similar to yours. Their lives had become revolved around the clinic: go to the clinic, stay in anywhere from two weeks to a month or more, go home with a temporary improvement and then back to the clinic again; virtually all of these people had had to stop working. It was very sad to here these stories and, combined with my own experience, made me develop grave doubts about the efficacy of the treatment given there. I hope that you find something that gives you more long term relief.
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unsolved1
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Re: Diamond Headache Clinic
« Reply #7 on: Feb 25th, 2005, 9:43am » |
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At some point, any relief is welcomed
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jasckorohod
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Re: Diamond Headache Clinic
« Reply #8 on: Feb 25th, 2005, 10:55am » |
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Amen.
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hubbydo
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Re: Diamond Headache Clinic
« Reply #9 on: Feb 25th, 2005, 1:02pm » |
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We only go back to the clinic when I cannot bring my hubby out of a cycle. For example: When he gets a migraine, I give him an imitrex shot. If things do not improve, I give him another in 2 hours. Finally, if things still do not improve, I call the clinic--day or night---and tell them I'm about to give a vistirill shot and that we need to come in immediately. Usually, we go the very next day--even on Saturday--where we see the doc--he gets another vistiril shot, a toradol shot, and another shot that contains some kind of steroid in it. We go home with scripts for depakote, verapamill, dexamethosone pack, and sometimes indocin(if it's bad). Plus--they give us samples of imitrex!!  My husband stays on this schedule for apx 6 wks. when we go back for a check up. He is then weened of the meds over the next 2-3 wks. Other than those times, he is med free. He is currently in some kind of cycle right now and we did have to go to the clinic, but only because we hadn't been there in 1 year, and they wanted to check on him, etc. We are managing--and he is working. He is taking the meds I listed until we go back. Headaches are coming at 2 a.m. and going away without abortive meds--so things are good. His migraines usually come once every 2 months or so--but the cluster got involved this time, and since we have had histamine before, they see us right away. I just get a little nervous because we usually don't have these break through headaches after the steriods, so I'm considering sending him back for more histamine--but lots of $$$  My hubby is a hard worker--and loss of work isn't really an option--we have to stay on top of these things!!--at all costs!!
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karma
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Re: Diamond Headache Clinic
« Reply #10 on: Feb 25th, 2005, 3:05pm » |
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Hubbydo,
Sounds to me like you need to see a CH knowledgable Neuroligist or GP.
Its only a suggestion but its probably the best bang for your buck. A knowledgable doc may be able to eliminate the emergency trips to the clinic along with the huge bills.
Read about melatonin for the nite hits.
Kudzu is showing promising results for people with similar cycles to your husbands and chronics.
Oxygen is also a very successful abortive. All these are relatively cheap and have little to no side affects.
Don't blow these things off the people here are more knowledgable than most doctors.
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Margi
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Re: Diamond Headache Clinic
« Reply #11 on: Feb 25th, 2005, 3:45pm » |
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Holy Hannah, Hubbydo!  As Karma says, get thee to a cluster knowledgeable neuro and do it FAST! I really think you're on the wrong path here, treating your husband. Torodol is the only one from your list that we've had any experience worth and, in a word, it's "crap" for cluster. Most narcs are.
Your words: "My hubby is a hard worker--and loss of work isn't really an option--we have to stay on top of these things!!--at all costs!!" - well, that just scares the crap outta me. Yikes! Get the poor guy some oxygen at the VERY least! And, by the way - indocin doesn't touch cluster either - it's for CPH. You REALLY need to get some better medical advice.
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| « Last Edit: Feb 25th, 2005, 3:46pm by Margi » |
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Margi
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Re: Diamond Headache Clinic
« Reply #12 on: Feb 25th, 2005, 3:50pm » |
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on Feb 24th, 2005, 5:12pm, hubbydo wrote:| My hubby was in an "irretractable cluster" cycle that had kept him in the hospital for almost 2 weeks and in bed for another week going from a base line migraine into a cluster every 20 minutes or so, and then back to a migraine. the pain was constant for over 25 days/24 hrs a day--and no doc or neuro could help him at all. He couldn't even walk--kept falling down. |
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I just read this post, Hubbydo. Man, this sure doesn't sound like cluster to me.
1. cluster every 20 minutes?
2. pain was constant for 25 days/24 hrs a day?
3. couldn't walk -- kept falling down?
Has he had an MRI? Something's not right here - this is REALLY outside the cluster box. Please push for a second opinion. There's a list of cluster knowledgeable doctors over at www.clusterheadaches.org, organized by area. Please please PLEASE see one of these recommended doctors!
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And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
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kathy copelin, ch.com 8/8/06
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jasckorohod
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paiRe: Diamond Headache Clinic
« Reply #13 on: Feb 26th, 2005, 10:52am » |
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Hubbydo, one of the problems that I had with the Diamond Clinic was, as you wrote, that they want to handle treatment and have you return to them. At the time I lived in NY and it would have been very expensive to continually fly to Chicago. If the medications that they prescribe help your husband, why not find a good neurologist in your town and have him/her prescribe them? I work as well, but have to take time off when the pain gets too bad and do lose money when I've used up my sick leave, but it sounds as if going to Diamond adds to your financial burden. Once again, think about going local for treatment.
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unsolved1
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Re: Diamond Headache Clinic
« Reply #14 on: Feb 26th, 2005, 6:32pm » |
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Dr. Diamond talked to my local neuro and arranged for me to do 21 bags of Histamine at my local hospital which I did twice. It is a burden traveling all the way to Chicago. Sometimes it's worth it.
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PCMCCK
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Re: Diamond Headache Clinic
« Reply #15 on: Feb 26th, 2005, 10:26pm » |
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The question is, if histamines work so well, why are they pretty much exclusively used by Diamond and why do patients keep having to come back (or, in the one case, have the meds shipped to them locally) for continuous treatment?
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Pinkfloyd
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Re: Diamond Headache Clinic
« Reply #16 on: Feb 27th, 2005, 12:46am » |
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on Feb 26th, 2005, 10:26pm, PCMCCK wrote:| The question is, if histamines work so well, why are they pretty much exclusively used by Diamond and why do patients keep having to come back (or, in the one case, have the meds shipped to them locally) for continuous treatment? |
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The treatment used to be "all the rage" when it was first used. As time went on, its been dropped by the others for many reasons. One, some don't believe it works well enough. Two, most have developed their own treatment plan, either DHE drips, magnesium infusions, etc. Three, 99% of docs and most clinics don't have the facilities to keep 40 or so patients in hospital beds for a couple weeks.
They don't check all their paatients into the hospital. its only reserved for the worst cases. And not just their own worst cases. The worst cases of other docs around the country (and beyond) when they don't know what to do for them. Last figures I heard were that Diamond had about 10,000 patients. They only have 40 beds. They do A LOT of good things for cluster people but the only thing that ever gets talked about is the high cost of the hospital stay. What do people expect a 12 day stay in a hospital to cost these days? Hell, hospitals charge about $3.00 for an aspirin.
They don't just treat clusters in the hospital. They see migraine cases, CDH, brain trauma...all of them. So, the percentage of their cluster patients that are hospitalized is rather small. If imitrex, verapamil and depakote do the trick, then Diamonds treatment plan is just about the same as everyone else's. They offer the histamine when all else fails. What do your (collectively)doctors offer when all else fails?
The histamine is not a continuous treatment, other than the 12 days. It's a matter of that working or not working. It is used to either break a cycle at best, or to at least cool off a cycle enough to make it manageable with "normal" treatments.
If it wasn't for insurance and big liability problems, the treatment could be done on an out-patient basis. Hell, after the first day, I could have done it at home by myself. Our insurance companies and lawyers just won't let that happen.
People return because it doesn't prevent future cycles.
Hey, I'm not trying to defend them. Just stating the other side and some facts as I see (saw) them. Most of you know it's not my treatment of choice 
Bobw
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BobG
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Re: Diamond Headache Clinic
« Reply #17 on: Feb 27th, 2005, 3:11am » |
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Since jasckorohod has become a guest this probably will go un-noticed, but
Hey jasckorohod, if you are lurking, please go back and read what Margi said. Smart lady there. I agree 100% with her.
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