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Topic: Thank The Gods There Are People Like You Out There (Read 427 times) |
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MarnyandMichael
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Thank The Gods There Are People Like You Out There
« on: Feb 24th, 2005, 12:12pm » |
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I am so thrilled there is a website dedicated solely to this affliction. I myself and not a sufferer except vicariously. My wonderful, loving fiance is. To make a long story short his doctor doesn't know a thing about this and has referred him to a neurologist but did prescribe imitrex. The neurologist right now financially is out of the question, Michael doesn't have insurance and can't get Medicaid to be able to go to a neurologist because the doctor will not admit this is dibilitating enough to effect him at work.
From my own research and based on what Michael suffers, I have come to the conclusion that yes, these are cluster headaches.....and that it is on the chronic end of the scale. Again I am not a doctor. He gets them 2 - 3 times a day for weeks on end. His explanation is that it feels someone has taken an ice pick and has stabbed him on the left side of his head and twists it over and over and over. His eyelid droops and drains, he gets completely congested and at some point feels like beating his head against the floor to try to stop the pain. He gets awoken from a dead sleep with them sometimes and also after waking up from a nap feels them coming on.
Again, I thank god I have found an avenue in which to find companionship for him and I with people who completely understand what Michael is going through
Much love to you all
Marny and Michael
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sandie99
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Re: Thank The Gods There Are People Like You Out T
« Reply #1 on: Feb 24th, 2005, 12:53pm » |
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Welcome aboard Marny & Michael! 
I'm glad you found this site!
Best wishes & PFdays and nights to Michael,
Sandie
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"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
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BobG
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Re: Thank The Gods There Are People Like You Out T
« Reply #2 on: Feb 24th, 2005, 4:02pm » |
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Hey M and M. Welcome to the board. Lots and lots of information under the buttons on the left side of the screen. Lots of reading to do. So get with it. There will be a test at 6:00 o'clock. 
There are some ways to try to keep the pain down that are free. Ice pack on the face, or heat pack, which ever works best. Sleeping in an upright position or at least with the head elevated.
Pure oxygen is an abortive of choice for many, many people here. It’s not free but is cheaper than drugs. Without insurance medical 02 is out but welders 02 is just as good.
Go over to the Medications, Treatments, Therapies Section and scroll down to the thread “5-HT activity in Kudzu”. After you’ve read that scroll down to the thread “no longer chronic”.
They might give you some ideas for help.
Please let us know.
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TxBasslady
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Re: Thank The Gods There Are People Like You Out T
« Reply #3 on: Feb 24th, 2005, 10:05pm » |
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Welcome to Clusterville
Bob is right.......there are several options available. Read all you can.
Someone usually here round the clock.
Let us know how Michael is doing.
PF vibes,
Jean
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LeLimey
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Re: Thank The Gods There Are People Like You Out T
« Reply #4 on: Feb 25th, 2005, 4:20am » |
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Hello Marny and Michael!
Nice to meet you
You've had some really good advice already, so read up and ask all the questions you like.
Make sure you let us know how you are getting on
Best wishes
Helen
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thomas
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Re: Thank The Gods There Are People Like You Out T
« Reply #5 on: Feb 25th, 2005, 9:36am » |
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If money is an issue you might want to check out the info on oxygen and get hooked up with some welder's O2. Also if he's getting "hit" at night try some melatonin before bed.
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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MarnyandMichael
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Re: Thank The Gods There Are People Like You Out T
« Reply #6 on: Feb 25th, 2005, 10:05am » |
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 When is money not an issue? lol
Anyhow, all I've been doing the last few hours this morning is reading. After I posted last night I called Michael's doctor and asked if they had any of those nasal Imitrex. She gave him two plus two more samples of the 100 mg pills. I have to laugh but when he opened up the one nasal spray, he pushed it (without reading directions mind you) and wasted that dose. It is tragic but funny in a small sense. I had never thought of oxygen as a deterrant.
A few months ago I was able to get Michael onboard with Bridges to Access. He gets a 3 month supply of 100 mg tablets shipped to him for only 5 dollars. Its wonderful, but with his chronic condition, it in all honesty is barely a months worth to him.
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pattik
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Re: Thank The Gods There Are People Like You Out T
« Reply #7 on: Feb 25th, 2005, 10:48am » |
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Hi Marny and Michael,
Welcome aboard. I think you can gather a lot of helpful information on this site, especially for cost-saving ideas--even with Imitrex. The info here has helped me immeasurably over the last few years, so look around. Remember, the folks here can really relate. All the best to the both of you.
PK
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The voyage of discovery is not about seeking new landscapes, it's about having new eyes--Marcel Proust
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MarnyandMichael
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Re: Thank The Gods There Are People Like You Out T
« Reply #8 on: Feb 27th, 2005, 5:41pm » |
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Michael is going through one today. I tried the cold deterrant, and he said it had no effect. Next time I'll try hot (I'm assuming by hot it means something like a hot water bottle).
He has only 1/2 an imitrex left. Not sure what we are going to do about getting more to fight this. But I can always try and call his doctors office again for more samples and maybe try to get a hold of some O2. Not sure how much that'll cost but it doesn't hurt to try. Maybe they can give him some injection samples.
God I wish I could physically do something for him to help instead of standing by and watching him go through this.
Marny
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Kris_in_SJ
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Re: Thank The Gods There Are People Like You Out T
« Reply #9 on: Feb 27th, 2005, 8:39pm » |
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Hi Marney and Michael,
It was mentioned in a note above, but I'd like to point it out to you again. ... Under "Medications and Treatments" threads, please read the thread on Kudzu.
It's (the thread) is quite long, but is kind of a test of how this all-natural plant ingredient is helping chronics in a very rapid manner! Since it's a natural plant material sold over the counter or online from herbal stores, it can't hurt to try it. No side effects so far from those who've tried it, and many successes. And ... it's inexpensive!
If you live in the south, you could probably just go out and dig some up!
Keep posting - PF Wishes!
Kris
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MarnyandMichael
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Re: Thank The Gods There Are People Like You Out T
« Reply #10 on: Feb 28th, 2005, 10:08am » |
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Oh, i read the thread about that and am actively looking for it in this area...so far no luck or no one knows what I'm talking about. Maybe I'm looking in the wrong places.
Marny
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LeLimey
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Re: Thank The Gods There Are People Like You Out T
« Reply #11 on: Feb 28th, 2005, 10:13am » |
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Hi Marny
I've ordered Kudzu from www.vitacost.com
It might be worth you having a look... if nothing else at least you'll know what the packaging looks like! Keep us updated with how you are going on
love
Helen
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jokrs2
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Re: Thank The Gods There Are People Like You Out T
« Reply #12 on: Feb 28th, 2005, 12:09pm » |
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Sometimes my wife will give me a deep massage into the upper pressure points in my back approximately behind the heart level. It is painful but when I'm out of Imitrex I usually wake up the next morning out of the headache. Good luck. Joe
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MarnyandMichael
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Re: Thank The Gods There Are People Like You Out T
« Reply #13 on: Mar 29th, 2005, 11:47pm » |
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Just thought I would pop in and update you guys on how Michael is doing.
I went to all the local health food stores and the like to try to buy some kudru root. There were none anywhere so I ended up ordering a bottle online.
It took two days for Michael to say that he actually felt some kind of effect. A full week later I looked back at my personal log and was shocked to notice that he had only had two *hits*. And according to him, never went above a 5 on the rictor scale. More shadows than anything else. Two more weeks went by with the same results. In three weeks he did NOT have to take an imitrex. Then we ran out. The Chronic stage was back almost immediately. We finally got the kudru back and are getting him back into the swing of things.
He got hit with a massive one a few hours ago. By the looks of it it was a 9 on the rictor scale. He took an imitrex and is now sleeping.
We also got him melatonin. To help him get some sleep.
Thank you all for being a sounding board. When I talk to people face to face about this only look at me and him with sympathy but no real understanding. Some of the time I think people think we're nuts. But here, there's people with real understanding and real sympathy from both sufferer's and their spouses/better halfs....
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jokrs2
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Re: Thank The Gods There Are People Like You Out T
« Reply #14 on: Mar 30th, 2005, 2:21am » |
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I have been using Kudzu for almost a month now, but have refrained from imitrex & morphine during the process. I am taking "Planetary Formulas Kudzu Recovery" at the recommended dose. It is definitely a lot cheaper with less side effects than the triptans. I will be experimenting with a cluster buster called Hawaiian Baby Wine Woodrose. It is legal in the US and from what I have been reading and researching this could be very interesting. I will be testing this product next week and if you like I could let you know the results. I get hit about every 4 hours like clockwork but the Kudzu has been keeping the beast pretty well locked up. Occasionally I'll hit a k3-4 but thats about it and the rest of the time I am in shadow. I am hopeful that the LSA in the woodrose will break up the shadow and give me a break for a week or 2. Another place to get Kudzu is called iherb.com & is fairly close in pricing to vitacost.com. Best wishes & PFD&N's
ps Do you have access to a hot tup or jacuzzi? Sometimes just getting in and submerging the whole head with just your nose sticking out can bring some relief, (at least for me and some others).
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aj8694
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Re: Thank The Gods There Are People Like You Out T
« Reply #15 on: Mar 30th, 2005, 8:18am » |
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WELCOME MARNY AND MICHAEL
I am new to this sight as well and I agree this sight is great for both me and my doc....... sy you need to find this sight but glad you did the people here have been nothing but GREAT to me and others
AJ
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RichardN
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Re: Thank The Gods There Are People Like You Out T
« Reply #16 on: Mar 30th, 2005, 10:48pm » |
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Hey M & M
Glad to hear back from you and thrilled the kudzu seems to be benefiting Michael.
Were you able to try the 02?
Keep us posted.
Be Safe, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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MarnyandMichael
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Re: Thank The Gods There Are People Like You Out T
« Reply #17 on: Mar 31st, 2005, 8:15am » |
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Actually, no we hadn't been able to try the O2 therapy yet. Michael wants to try one thing at a time for now, to really see if it would work. We did talk to his doctor about it, and she stated that she would NOT write a prescription for him for O2 because she wanted a consult from a neurologist. *Sigh* Anyhow, for now, the Kudru and Imitrex and Melatonin combo seem to be keeping things on at least a bearable balancing act.
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nani
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Re: Thank The Gods There Are People Like You Out T
« Reply #18 on: Mar 31st, 2005, 9:46am » |
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Personally, I think it would be better for Michael to use oxygen instead of Imitrex to abort. It's better not to use trex and kudzu at the same time. A neuro visit certainly wouldn't hurt...IMHO
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MarnyandMichael
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Re: Thank The Gods There Are People Like You Out T
« Reply #19 on: Mar 31st, 2005, 10:05am » |
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Michael only uses the imitrex when they are massive ones. And thanks to the kudru....they have been kept to a bare minimum. The others...he just distracts himself with whatever he can or however he can.
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maureen
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Re: Thank The Gods There Are People Like You Out T
« Reply #20 on: Mar 31st, 2005, 12:17pm » |
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Hello and welcome
I would have to agree about the o2. I to kept putting off trying it thinking nothing could work that good but with a little push from this board I finally did and wow I won't leave home without it, it really is much cheaper and works like a dream, hard to believe but true and won't leave you feeling tired like the trex. Now when I feel a ha coming on I excuse myself for 15 min then can usually get right back to what I was doing, if you can please get him to try it.
Good luck to you both Micheal is lucky to have a wonderful supporter hats off to you.
Maureen
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