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Topic: Histamine Desensitization _ UPDATED (Read 3988 times) |
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unsolved1
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Histamine Desensitization _ UPDATED
« on: Mar 1st, 2006, 5:11pm » |
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Well, it's about that time again. I've done amazingly well since late November but the hits have returned. They're still not as bad as they usually are, but i'm tired and in need of the break. I hate to go spend so much time in the hospital ... but I know it'll pay off. I go in tommorrow and will probably stay in for 11 - 12 days. 
I urge any 'beaten down chronics' who have 'tried everything' to check out Histamine. It has really changed my life !
UNsolved
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Intravenous Histamine Desensitization
Intravenous histamine has been found to be an effective treatment for patients with cluster headache that has become refractive to medical therapy. Patients treated with histamine infusions repetitively over a course of about 10 days appear to have restitution of response to standard medical therapies. Because of the prolonged nature of intravenous therapy, it is not recommended for patients who have other medical options available. Since the course of histamine infusions can be repeated if cluster headaches recur and since this therapy is well tolerated by most patients, it may be considered as an alternative to surgery.
SOURCE:http://www.guideline.gov/summary/summary.aspx?ss=15&doc_id=6582& nbr=4142
EDITED TO ADD: CHECK THIS OUT:
http://www.findarticles.com/p/articles/mi_m0BJI/is_9_30/ai_63125273
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| « Last Edit: Mar 14th, 2006, 4:25pm by unsolved1 » |
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nani
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Re: Histamine Desensitization
« Reply #1 on: Mar 1st, 2006, 5:14pm » |
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Good luck, Michael. I'm praying that this is the last one you'll ever need. hugs and pf wishes, nani
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StressFree
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Re: Histamine Desensitization
« Reply #2 on: Mar 6th, 2006, 5:27pm » |
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Hey there UnSolved,
It sounds like it'll be another week before we get a report from you. I hope it helps you again. I was wondering if anyone knows, have they looked at a way you could do this at home. Perhaps histamine tabs, or an at home i.v.? I know part of it likely has to do with controlling pain during attacks that may be caused by or that occur with the histamine treatment. That could certainly be done at home as well (many of us episodics go through some of that to get a break, or at the end of a cycle when things get really bad). Let us know how you are doing. PFDAN's!!! Rich
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Karla
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Re: Histamine Desensitization
« Reply #3 on: Mar 6th, 2006, 5:39pm » |
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Hey unsolved! Thanks for sharing the info. Glad you have foiund something that brings you relief. May it last a long time.
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Karla
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Jonny
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Re: Histamine Desensitization
« Reply #4 on: Mar 6th, 2006, 6:22pm » |
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Hang tough, Bro!!!
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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CHTom
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Re: Histamine Desensitization
« Reply #5 on: Mar 7th, 2006, 7:36am » |
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I wish you luck-are you returning to the Diamond Headache Clinic for your treatment? When I was a patient there, once, in 1996, I met a number of sufferers like you who kept returning every few months for another round of treatments. I personally don't think that the short amount of pain free or decreased pain time that you get from their treatment is worth the time or the money. I hope that one day you will prove me wrong and will remain pain-free after a visit to the clinic, but having met other patients who had been returning for years every few months without amy long term relief, I think that the treatment and the Diamond Clinic are over-rated and just a money making machine.
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vig
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Re: Histamine Desensitization
« Reply #6 on: Mar 7th, 2006, 8:36am » |
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I think he has it done at a local clinic now...
not as expensive as Diamond $eymour
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unsolved1
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Re: Histamine Desensitization
« Reply #7 on: Mar 14th, 2006, 4:25pm » |
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Well I've made it out alive. 
I still have a picc line in my arm incase I need more meds (steriods, DHE, or Demerol) . I have hardly no veins left. Soon, they won't even be able to place a picc because of the excessive scar tissue on my veins.
I've been HAMMERED lately. EVERYTIME I fall asleep - I get a major hit in about 45 minutes. So, sleep is minimal.
I've had Demerol 100 mg IV every 4 hours for 12 days, now i'm cut off.
The Histamine didn't work out so well this time. It has failed twice before ... but helped on many other times. We know how to do it now so we do it locally. I'll just have to wait awhile and try it again. It has been the best thing I have tried so far fo long lasting PF relief.
BTW, I am going back for an office visit @ Diamond April 5th. ( I go there not because I like them, but because they introduced me to Histamine. It's the least I can do! )
I pray the beast lets me go and I can get some sleep tonight.
PF Wishes,
UNsolved
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CHTom
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Re: Histamine Desensitization _ UPDATED
« Reply #8 on: Mar 14th, 2006, 5:48pm » |
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I really do hope that you get some relief, unsolved, but I still believe that the Diamonds are quacking all the way to the bank. Regarding your f/u visit to see Merle Diamond, at the time that I went the staff wanted to set up an appointment to see Dr. Diamond several weeks after my discharge; from where I lived at the time it would have required shelling out several hundred dollars for the airfare; being careful with my money, I asked what the appointment would consist of-would I be admitted for a short time for some tests, etc. The answer that I got was that Dr. Diamond would just ask me a few questions, like she did at my intake (and they were very few, essentially helping her to fill out some medical form, took about 15 minutes). When I told her to forget about it, that I couldn't afford nor see the point to travelling all the way to Chicago for that, she literally looked horrified and wanted for me to wait for the goddess to get to work, but I told her that I had a plane to catch. I'll say it again: in MY opinion (and those of several neurologists), the Diamond Clinic is just a cash cow for the diamonds and we CH victims are paying a heavy price-financially speaking-to allow the Diamonds to become even more wealthy at our expense. My best hopes that you enjoy some pain free time.
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nani
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Re: Histamine Desensitization _ UPDATED
« Reply #9 on: Mar 14th, 2006, 6:00pm » |
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Praying for your permanent break, Michael. Keep us posted. hugs, nani
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Karla
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Re: Histamine Desensitization _ UPDATED
« Reply #10 on: Mar 14th, 2006, 7:36pm » |
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Demerol won't touch my ch. You are lucky. I need dilaudid 4mg to work for me. I dread the day that loses its effectiveness. What meds do they give you in the Histamine treatment? Meaning what makes up the Histamine part? Plus any additional stuff they give you. I have been getting hit badly lately and am getting a referal back to the pain clinic and am looking for alternatives to try. My options are very limiited meaning due to being on antiphycotics I can't try shrooms or lsd or seeds or kidzu etc. Thanks for your help.
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| « Last Edit: Mar 14th, 2006, 7:36pm by Karla » |
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Karla
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unsolved1
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Re: Histamine Desensitization _ UPDATED
« Reply #11 on: Mar 15th, 2006, 1:08am » |
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I don't know if they are "quacking" or not, like I said, they did introduce me to Histamine infusions. It's costly, time consuming, and doesn't always work ... but I did get some significant relief from it in the past, and I'm not giving up on it yet. It was just a "fluke" ! I'm in a 'bad cycle within this cycle'. Hopefully this hell will end or slow down soon !!
I have no intentions on being hospitalized at the Diamond Clinic. Been there and done that. THere is a local hospital who can do the same thing better and probably cheaper too. At the clinic I believe they frown on Imitrex use. I feel that I must use it for all (definition) kip 8's and up. I don't want to suffer needlessly. They don't like to give pain meds either. At my local hospital, I get pain meds along with Imitrex injections, if needed. No pain meds (so far) will help with a KIP 8 or greater. Plus, the food is Waaaay better locally  !!
For those interested, I am posting the IV Histamine protocol. It is a MS Word document. Here it is:
http://home.insightbb.com/~clusterhead06//IV_Histamine_Protocol.doc
THis time at the hospital along with the Histamine, I did DHE IV for 3 days @ 0.5mg every 6 hours with Phenegren for 3 days (total of 6mg). It didn't work 100% but helped greatly. After that I waited a couple of days and also did 250mg of SoluMedrol (two doses via IV). It didn't help 100% either, but helped greatly for a short period of time. I got one last dose of steriods before I left today. I did a couple of meds to help protect my stomach too.
Well, I'm gonna "risk it" and try to get some sleep. I really need some, any. Goodluck everyone !
UNsolved
BTW, even with all the meds, I averaged several Kip5's - Kip 7's (with 2 kip8's) during the past hospital stay.
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| « Last Edit: Mar 15th, 2006, 1:18am by unsolved1 » |
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Karla
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Re: Histamine Desensitization _ UPDATED
« Reply #12 on: Mar 15th, 2006, 9:38am » |
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Thanks so much for your response.
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Karla
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Ming
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Re: Histamine Desensitization _ UPDATED
« Reply #13 on: Mar 16th, 2006, 9:39pm » |
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Hi Unsolved and other board members,
Thanks so much for posting your experience with Histamine Desensitization at the Diamond Headache Clinic. I live in Chicago and have been seeing them for over two years now. They've been successful in stopping most of my cluster cycles until this last one which started back in November (!).
I'm on Lithium, Verapamil and Depakote now, and have gone through several rounds of Frova / medrol, prednisone and nothing has broken the cycle. They are recommending I go in to the hospital for the HD treatment. Can I ask you a few questions about it?
How many times was it successful for you? It sounds like you've done it at least three times?
In your quote you say you would definitely NOT go to Diamond to have it done again in the future. Why is that? (Perhaps you live out of state? Or is it something else?)
Where there any side effects from the Histamine?
How was the actual hospital stay? Were you comfortable and well taken care of?
Was any portion of the care not covered by your insurance?
What was the longest amount of pain free time you enjoyed after getting the treatment?
Thank you in advance for any responses.
-Ming
on Mar 15th, 2006, 1:08am, unsolved1 wrote:
I have no intentions on being hospitalized at the Diamond Clinic. Been there and done that. THere is a local hospital who can do the same thing better and probably cheaper too. |
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unsolved1
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Re: Histamine Desensitization _ UPDATED
« Reply #14 on: Mar 17th, 2006, 9:47am » |
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I'll try to answer all your questions the best I can. Here it goes.
I'm not exactly sure now how many times I've done Histamine. Probably 10 times or so. It failed 3 times.
I do live 300+ miles from Diamond so getting there and back is a hassle. Since it is out of state, my insurance won't cover 100% of the charges and Diamond is holding me liable for the charges (before I can be seen again). Another reason I don't like to go to the hospital A Diamond is: I want to be as comfortable as possible. Diamond doesn't NOT want me to use Imitrex injections or pain meds that work. I guess i'm supposed to suffer thru hits while there.
Side effects from the Histamine have been minimal but can include induced attack if the flow rate (of infusion) is set too high. I also get a bit 'stuffy' (nasal congestion)
The longest period of relief was nearly 3 months (so far)
UNsolved
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Ming
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Re: Histamine Desensitization _ UPDATED
« Reply #15 on: Mar 17th, 2006, 2:05pm » |
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UNsolved-
Thank you so much for your reply. I've really been struggling to decided if the hospitalization is right for me, but it sounds like it's been great for you and Diamond is very confident of the treatment - they said I could expect at least one whole YEAR without headaches at minimum. That sounded too good to be true, but I think it will be worth the shot.
Since I live so close to St. Jospeh it would be relatively easy for me to try. The biggest problem is that I run my own company - two weeks away is going to be a huge problem financially. So I'm concerned not only with the effectiveness of the treatment but the feasibility of still working via the internet / phone while it is going on. If you are up for it, I have another round of questions
Did you have internet access or computer access?
How did you pass your time (TV? DVD player? Visitors? Was a spouse allowed to stay with you?)
Were you required to take part in the group therapy aspects of the inpatient clinic?
For the few hours a day you were not hooked up to the IV were you allowed outside?
Were you able to get any excercise at all?
Not being able to take imitrex sounds terrible, although personally no abortive is currently effective for me besides O2 so I would be more comfortable with that.
Thank you again for your comments and sharing.
-Ming
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unsolved1
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Re: Histamine Desensitization _ UPDATED
« Reply #16 on: Mar 17th, 2006, 6:03pm » |
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THey do not supply computers or internet access. I did have a laptop computer with me during one of my stays, which helped pass the time. They have TV's, VCR's, some movies, books, and puzzles.
You are allowed to have visitors everyday. They have a mini-motel on the same floor as the inpatient clinic, but rooms are limited and should be reserved. (I think they were about $80 / night). There were a few people who had their spouse or parent(s) there almost all day, everyday.
You are encouraged to take part in classes. They give you a schedule. I didn't attend hardly any. Clusterheads do NOT have to take part in biofeedback (relaxation can trigger an attack for many).
You are allowed to sign in/out and go to the cafeteria or giftshop. You are NOT allowed to leave the building at anytime.
Incase you're a smoker, they have (or did have when I was there) a designated smoking room (very small) that you can use during designated times.
Exercise is encouraged. They have a treadmill, but I don't remember any other exercise equipment. (I believe they have a class for 'stretching') lol ...
They have 1 washer and 1 dryer and supply detergent.
THe reason I was not allowed to take Imitrex was that they diagnosed me as a "Triptan Rebound" case. I was glad that I snuck in vials of Trex and needles, but I ended up running out before I left. 
If you go, don't overlook the fruit trays they set out everynight @ around 7 pm  (I love fruit)
I thought the food there sucked! Some liked it. We arranged a full meal from KFC delivered one night and about 8 of us pitched in and had a feast. (Something to consider)
UNsolved
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| « Last Edit: Mar 17th, 2006, 6:06pm by unsolved1 » |
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