Diamond Headache Clinic

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Diamond Headache Clinic

Post  7777Trinity on Mon 09 Sep 2013, 5:04 pm

Has anyone heard anything about the Diamond Headache Clinic in Chicago? I am thinking about getting an appointment and making the trip there for an evaluation.

It's pricey and the initial appointment is 3 hours long, at the end you either get a treatment plan and go home or you are placed in the hospital for 5-7 days for further evaluation and treatment.

Today I got my Xanax prescription filled to cover the days I am not allowed to take the abortive med Relpax. At least now I can put myself out of my misery again Smile (And my heart won't stop beating).
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Re: Diamond Headache Clinic

Post  Sara79 on Mon 09 Sep 2013, 11:31 pm

I've heard about it, and I know a couple of people, either here or on the other migraine board I'm on have been there, but I sincerely cannot remember what they've had to say about it. You might wanna do a search here, and if you want, PM me, and I'll send you the other board's address. I can't remember if it's against the board rules here, so I'd rather play it safe.

For the Xanax, I'm glad you got it again, and I'm glad you've seen your docs, even if I do think your neuro is an incompetent rectum-trying to avoid foul language, but I know everybody else here is thinking the same thing. Just in case your heart should stop entirely, make sure a member of your family knows where this thread is, it could leave your family very wealthy after the malpractice suit. I hate to be someone that advocates medical lawsuits, but in this case, I think it would be warranted.

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Re: Diamond Headache Clinic

Post  Anna's Mom on Tue 10 Sep 2013, 2:19 pm

Anna has been treated at Diamond. I think very highly of them.

The big question...can you afford the hospital stay? I think doing so brings very good hope to a struggling migraineur. They will try different IV infusions, and they will more than likely change your preventatives. If something helps infusion-wise, you could try and get it at home. IV magnesium would be one example.

I think to travel far just to have an office appointment (without the hospital stay) would not be really worth it for a severe migraineur. Improvement is hard to come by with preventatives, for most people I know. And no headache clinic will prescribe excessive abortives.

If you want to be hospitalized, tell them that when you make your initial appointment. They will try to schedule you on a day they do admits. You can be honest and tell them you are "bad enough" to believe an admit is likely.

Anna was in their Unit in April for two weeks (she's complicated). It was her third admission, over a period of years. I was very grateful for all they did for her.

I highly recommend going to Diamond. If you have a serious head pain problem, and if you are traveling a long distance, I would say go for hospitalization in their Unit.

Check with your insurance first, to see what they will pay for.

You can private message me, and I can call you to give you more details.

Hang in there, Trinity!!!!!!!!!!!

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Re: Diamond Headache Clinic

Post  7777Trinity on Tue 10 Sep 2013, 5:20 pm

Cheryl
I sent you a PM.

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Re: Diamond Headache Clinic

Post  Platypus on Tue 10 Sep 2013, 10:02 pm

I have a very negative opinion of the inpatient headache clinics in general, and the Diamond Clinic in particular. Over the 22 years I've had migraines I've read many many many reviews by patients who have been to the Diamond clinic. My overall summary is people come out the same way they went in -- only poorer financially. A member of my real-life migraine support group did a stay there. She says it was a waste of time and money and has total disdain for Diamond.

There are a LOT of migraine patients who have passed through there. I strongly recommend getting a wide sample of opinions before plunking down that kind of money.

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Re: Diamond Headache Clinic

Post  7777Trinity on Wed 11 Sep 2013, 6:27 am

Thanks Platy

I think we are going to do Pain Management again first, I have a call into them.

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Re: Diamond Headache Clinic

Post  Anna's Mom on Wed 11 Sep 2013, 4:18 pm

Trinity, I didn't received your PM, if you want to try again.

We didn't have to pay anything for Anna's two week stay there in April because we met our deductible with another expensive hospital stay somewhere else. And the same for her three week stay two years ago...it was a wash. So I come from a different perspective (it has been covered). Our insurance has never protested her long hospital stays at Diamond. Other people do have that problem.

I know there are bad reviews online. I've read many. But for me it is balanced with positive stories I've seen in person there. I befriended an elderly couple there in April...husband was incapacitated with chronic HA pain. They were wealthy, and they couldn't enjoy their life because he was in so much pain (he had been a big game hunter across the globe). He came to Diamond in severe pain, and he left pain free after five days. It was the infusions that helped. His very committed internist was going to duplicate the infusions at home. So there was a happy ending, as far as I know.

Not everyone gets better, and it can cost an arm and leg to go there. It depends upon your insurance. But I saw good things, made some dear friendships, and there is nothing like it here in my state. So that is why I give them two thumbs up. I know they don't help everyone. Far easier to go there when you live in IL or close to it, too.

Trinity, going the pain management route is a good option also! I want to encourage you, whatever you decide.





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Re: Diamond Headache Clinic

Post  Platypus on Thu 12 Sep 2013, 2:24 am

But it means absolutely nothing that this fellow was pain free after 5 days. One of the most common complaints against Diamond and the other HA clinics is that people get relief while they're there but their HA's come back when they get home. Hence my comment that people come out as they went in, sans their wallets.

We don't want to learn to live with our condition, we want to live on the hope that we'll be "cured". We do better for 5 days or 5 weeks or even 5 months, and we think "the nightmare is finally over!"... Then the headaches come back.

No one knows what the future may bring. A new preventative may be released that works for us. We may "grow out" of our headaches. Or we could develop seizures or paralysis or strokes. Knowing all those possibilities, I think it's best not to believe in magic. If you don't soar with the highs you won't bottom out with the lows. Measure change in years. Then you'll know it's real. Meanwhile enjoy the moment. It's all we have anyway.

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Re: Diamond Headache Clinic

Post  Anna's Mom on Thu 12 Sep 2013, 4:53 pm

Wise words, Platy. They spoke to me.

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Re: Diamond Headache Clinic

Post  7777Trinity on Thu 12 Sep 2013, 8:39 pm

Thanks Platy
We just have to make the most of the "almost normal" days I think. If I wake up and feel really good, instead of catching up on laundry, house cleaning, ironing etc.; I try to do something outrageously fun to do! I do have a bucket list Smile I realize that stroke, brain bleed and coma are all possibilities with migraines this severe and frequent. I try to keep my blood thin to avoid the stroke factor, the rest is really in God's hands Smile

With that in mind, I am going to open a new post called "The Bucket List". I would really love to hear everyone's wish list of things to do while they still can Smile

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