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Topic: Diamond Headache Clinic in Chicago (Read 565 times) |
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85Vette
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Diamond Headache Clinic in Chicago
« on: May 27th, 2003, 6:46am » |
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My husband is a sufferer of CH (since 1986) and I'm not sure he can take much more. He's being weaned off Prednisone and is at 5 mg. every other day. We're relieved to see his immune system kicking in again, but his nightmarish CHs have returned, along with the shadow headaches and rebound headaches. We're wondering if anyone has ever been to the Diamond Headache Clinic in Chicago and, if so, were they able to find relief of any sort? His job is in jeopardy from the fog he's in most of the time, and his inability to concentrate and focus. I'm so worried about him. After taking every kind of med imaginable, he's back to just his Lithium everyday and he goes on O2 when one comes. He now takes Zoloft for depression, which helped at first but now, after 3 weeks, he's pretty much in the same state he was before it was prescribed. Anyone ever go to this headache clinic? Bless you all for being here. ???
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To sleep, perchance to dream . . . I'd settle for no white hot poker gouging my eye out from the inside.
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forgetfulnot
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Re: Diamond Headache Clinic in Chicago
« Reply #1 on: May 27th, 2003, 2:12pm » |
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85, do a search upper right, there are some posts in the archives, good luck.
Lee
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MarkHW
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Re: Diamond Headache Clinic in Chicago
« Reply #2 on: May 27th, 2003, 3:27pm » |
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I went to Diamond years ago.
They were very knowledgable and helpful.
I learned a lot from going there, but stopped going because I felt that my treatment got to a point where they couldn't do anything beyond what a local neuro could do.
I would go to Diamond with the idea that they may find something, but don't look for a miracle.....
I'm now looking into the mayo clinic in Arizona where they do the ocipital nerve stimulation for cluster. Again... not thinking this is the end-all-be-all, but you have to try something!
Mark
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The clusterhead formerly known as williamsmh.
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oringkid
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Re: Diamond Headache Clinic in Chicago
« Reply #3 on: May 27th, 2003, 4:13pm » |
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Has he ever tried the combo of Lithium and Verapamil? Seems some get much better results with the combination than with either alone.
Good luck and keep us informed.
Sherry
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Pinkfloyd
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Re: Diamond Headache Clinic in Chicago
« Reply #4 on: May 27th, 2003, 5:35pm » |
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I've been a patient at Diamond for about 20 years. I guess thats some proof that they don't yet have a "cure" 
I haven't been back in 3 years. Not because I don't like them, but because I've replaced them with the mushroom treatment. (They know why I'm not there and fully understand and have been quite happy about not seeing me)
I once went to Mayo in Minn. and they sent me back to Diamond.
Some people have great results and are happy there, but as with all such clinics, some people aren't so happy.
If he is accepted as an inpatient (which it sounds like he would), I would expect him to be put onto the histamine treatment. (23 IV bags over a period of 12 days). I had some good results with this treatment and saw many others have their cycles broken. (not everyone, but most)
Other than the histamine, they offer about the same things the other major clinics would. The most important thing is being assigned to a doctor that you (he) can work with. You can choose your own doctor if you're referred by someone..... I'd certainly have a few names to suggest if it gets that far. If you have any ???'s, feel free to write to me.
Diamond has its good and its bad. No promises but they were the first inpatient clinic for this type of thing and they have been at it for years.
Best of luck,
Pinkfloyd
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Wendy1
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Re: Diamond Headache Clinic in Chicago
« Reply #5 on: May 27th, 2003, 9:28pm » |
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Went to Diamond for about 4 cycles. Last time was about 1 1/2 yrs ago. They didn't really do anything special. I kind of felt like they were just like everyone else, (i.e. try this see if it works).
They give you 1-2 injections of steroids, put you on preventatives (usually 4-5 meds), give you Toradol injections and a script for O2 and send you on your way. NOTHING for the pain!!
They basically concentrate on TRYING to break the cluster, never mind your out of your FREAKIN mind if none of the above works.
Lab work is MANDATORY, so that is extra $$ also. I suggest you just find a good neuro. They can do the same thing.
Let's face it, there is no miracle cure for clusters.
Good Luck, Wendy
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chrismo
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Re: Diamond Headache Clinic in Chicago
« Reply #6 on: May 27th, 2003, 10:03pm » |
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I definately recommend that you look into the shroom. I am all getty over the way they have affected me. I experienced no psychadelic trip at all. It slightly relxed me for 2 hours or so and then nothing more. And it seems to have worked perfectly. I have seen many miracle stories with shrooms... perhaps a miracle is what you need. I am getting to the point where I am against prescription meds, they just dont feel right in my body when I have to take them EVERY day, plus there are so many side effects to dick around with. If you havn't done so already, read the two threads about "shroom success" and "disaster with shrooms." there is also a link on one of those threads that goes to a FAQ called Cluster Busters. This 30 page FAQ tells you pretty much everything you would want to know about the shroom treatment including exactly how to do it. It provides much more information about a therapy than any doctor has ever given me about prednizone, zomig, inderal, maxalt, depakote etc.
Good luck - Chris
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Jackie
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Re: Diamond Headache Clinic in Chicago
« Reply #7 on: May 29th, 2003, 8:41pm » |
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Blake was a patient of the Diamond Headache Clinic...hospitalized for over 2 weeks at a cost of over $20,000.00. Their treatments are outdated and mostly directed toward the migraine sufferer....could have changed by now but that was our experience. Our GP knows more and so do the people on this board. I'm sorry but from our experience we woudn't recommend them at all.
I'm so sorry your husband is having such a bad time. The suggestion of lithium and verapamil is a good one.....the oxygen is good too. Has he used imitrex or zomig to abort. These work well for most sufferers and don't leave one in a "fog".
Good luck...hoping you all find relief soon.
Jacks 
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Charlie
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Re: Diamond Headache Clinic in Chicago
« Reply #8 on: May 30th, 2003, 5:55am » |
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Well........
The thing is that if Diamond or other clinics were really successful, it would be all over this board, all the time, and there would be nothing but praise for them. Sad to say, nothing at all close to it. Mention of it is less than sporadic and clusterheads never shut up about successful methods. Diamond is damned expensive the last I heard.
I believe you'll find better information here and it'll be focused on CH.
Here is the techinque I learned from a cranky old neurologist. The thing about it is.....it works for me and others here. The best of luck to you:
Dr. Wright's Circulatory Technique
This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many.
When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand.
This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time but when this works, the relief is almost immediate.
I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended.
This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience.
When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance.
I wish you the best of luck - Charlie Strand
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Camerooskis_Mom
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Re: Diamond Headache Clinic in Chicago
« Reply #9 on: May 31st, 2003, 9:58pm » |
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Going to the HA Clinic. Going to the Pedio Neuro. Consulting w/ regular Pedio.
I'm just looking to survive the attacks at this point. HA Clinic has responded great, son likes him much better than the Pedio Neuro. Having a child at such a tender age has garnered us extra attention though (admitted by dr & staff). So far they have worked w/ me on what I think is comfortable as far as followup, etc... I can say this, I've read their books and while they do publish alot on migraines they eliminated migraine right away and are working to help me w/ son's CH. Also, they have had a child same age as my son several years ago that presented w/ CH. It's been helpful because I have been able (w/ permission of course) been able to compare symptomolgy & treatments. I don't feel like I am flying blind.
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MarkHW
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Re: Diamond Headache Clinic in Chicago
« Reply #10 on: Jun 1st, 2003, 6:20am » |
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I'm really sorry to hear that you and your son are dealing with clusters.
I have 2 sons (15 & 11). They both have migraine and that was horrible enough. It's so hard watching your child in pain.
I started with migraine at 3 - both of them at 5. I'm praying that neither of them end up as clusterheads.
I just wanted to say that we're here for you if you need anything!!!
Mark
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kcoaster
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Re: Diamond Headache Clinic in Chicago
« Reply #11 on: Aug 13th, 2003, 9:34pm » |
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This reply is quite late, but from my experience RUSH, RUSH to Diamond. Years ago I drove from Gaand Rapids, MI many times and found my mircle in Chicago. After many failures my "cure" was found-- oxygen--now 20 years without a CH...
Good luck
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vig
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Re: Diamond Headache Clinic in Chicago
« Reply #12 on: Aug 14th, 2003, 9:57am » |
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my experience wa$ that they were very good at migraine$.
...and very expen$ive.
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never, Never, NEVER quit. -Winston Churchill
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