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Topic: Hello to U all! Advice please...... (Read 706 times) |
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tinkster45
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Hello to U all! Advice please......
« on: Jul 3rd, 2004, 12:00pm » |
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Hello to you all.
My name is Joy.... I stumbled onto your board last night while searching the internet for information and help. I do not have cluster headaches but have a great friend whom I care greatly for who does.
I am the mother of a severly handicapped child with CP and Epilepsy. She is now 16. 11 years ago I found a great support /chat group for those with epilepsy and attribute that group and their excellent info and support as my life line. Through them I learned more than I could have learned from 100 drs in a lifetime and after 8 long years of struggling with uncontrollable epilepsy we have had 4 years of control and a new life. I attribute a great deal of that to those that I learned from in that group. I hope through this board that I can learn something that might help my friend to achieve some comfort but mostly to help me understand how to be a support to him.
He is originally from Chicago and was treated by Merle Diamond. He has moved from the area and his last visit with her was 5 years ago. Nothing they were able to do was of any help to him. He is in a cycle now and has sought no medical advice or taken any medicines in this 5 year period. This is so contridictory to "my" experience with my daughter and her condition so I am having a very difficult time with just sitting back and not doing anything but mostly I dont know how to be a support to him.
I have been reading much of the information on your site and will continue to read read read but I wanted to say hi and mostly find out what suggestions you could give me as to how I can be a good support for him. Thanks in advance for any info and I hope to get him to post here soon. I just "hope" there is some relief for him somewhere.
Joy
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forgetfulnot
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Re: Hello to U all! Advice please......
« Reply #1 on: Jul 3rd, 2004, 12:45pm » |
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HI, get his ass on this board and let him help himself would be my 2C.
Lee
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miapet
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Re: Hello to U all! Advice please......
« Reply #2 on: Jul 3rd, 2004, 7:40pm » |
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Hi tinkster . . .welcome to the board . . .sorry to hear about your friend.
I would second forgetfulnot's post with a twist . . .get him here when he's able to sit at a screen . . .when I came here, D was just too sick to be able to sit at the computer . .in fact, when he would try to read (computer or otherwise), it would trigger a h/a . . .and he was getting hit way to often.
Without knowing what he has / hasn't tried . . .how is he fighting them now?
I don't know if you are around your friend when he has his h/as . . .but if you are, you should talk to him when he's not having one, to see what you can do to help when he is . . . maybe he'll want ice etc, maybe he'll want to be left alone . . .but at least you'll know.
Other than, be as educated as you can be . . . and help him find this site . . .
*positive light and energy*
miapet
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Leo
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Re: Hello to U all! Advice please......
« Reply #3 on: Jul 4th, 2004, 6:11am » |
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Hi,
I'm the friend that Joy is talking about. I've been going through this site all day, and have to admit that I wished it was around a long time ago. If the truth be known, I'm happier that Joy found it because I've never felt that she fully understood what we go through.
Some background, I've been getting these for roughly 22 years. Back then, there were no websites and headaches weren't taken very seriously by the majority of the medical profession. Most of you know about that. I was a teenager, and I went through all the cat-scans and tests. I was fed the traditional pain killers by some of the best Neuro's in the midwest. Frankly, they didn't know what they were doing. I've also tried Chiropractor's, Naprapath's, blah blah blah, besides eating tylenol by the handful. None of which ever worked, as we know.
After a time, my sister (a nurse) became very good friends with Dr. Merle Diamond. The Diamond Headache Clinic was the acknowledged leader in taking the condition seriously. It's enough said that Merle took exceptionally GOOD care of me because she worked with my sister. Merle saved my life, and it wasn't with pills or treatments, but rather because she was the first one who finally put a "name" to it. I could finally DEAL with it, because somebody knew what it was. It wasn't my imagination and I wasn't crazy.
Merle did try, and I've gone through the majority of cluster medications with no success. I believe one of the few I didn't try was Imitrex, as it was decided my CH's peaked too fast for it to do much good. But through all that, and because of Merle, I ultimately learned to live with them during my cycle. As a teen, I did some stupid things trying to get rid of them, but now I realize that putting my head through a wall won't fix anything, etc., etc... My typical routine is pacing and wimpering, having gave up cursing God and screaming a long time ago, along with the more drastic measures.
Currently, I am coming off my cycle.... in fact, it's been almost 24 hours since I had a CH. Normally my cycles run every 2 to 3 years and last for an approximate 3 months with a total of 12 to 15 CH's per day. They've receded now to about 3 a day which is always a sign that I'm near the end.
That is my background, and leads to why I think it's wonderful that Joy found this group. Joy is of the firm belief that a "fix" is right around the corner, and the real issue is that I refuse to seek treatment. The fact that I've gone through them, many times, and prefer not to pollute my body with more ineffective meds. plays second fiddle to everything else. I've tried to expain, the best I can, that if there were something new with even the slimmest chance that it would make the CH's tolerable, I would jump at it. There's been no revolutionary new meds. though. There are certainly a few interesting suggestions I've found today on this site which I would look forward to trying, but frankly, it's reasonably a 99% chance that I'm at the end of my cycle and am okay for a couple of years. Trying anything now would hardly be conclusive and the severity/frequency of the CH's has diminished enough that it doesn't really warrant it... although the shrooms would certainly make me a happy fellow. 
I've also tried to explain that, as far as I've ever heard, CH's don't actually cause real long term damage. They are just a condition of something else. Perhaps I'm wrong, but unless we do something stupid there's no real damage. I would venture that the only risk would be the continual ingestion of "ineffective" meds.. I am well beyond the years when a shotgun seemed like a very attractive remedy..... I really have learned to live with them. It affects my functioning, yes, but I live with them every few years.
But, basically, she's convinced that it leads to permanent damage and that a cure is "out there" if I go through enough cat scans, pills, herbs etc.. I don't deny parts of that, but I'm at the end right now.
So I've been intriqued with a lot that I've read here. Hopefully, I never get them again and won't have to try some of the newer suggestions. And hopefully, Joy might finally get a better understanding of these things. She's pretty much stated that unless I seek more help, she won't stick around to deal with it.  I don't know how that's really supportive, but I do understand it coming from somebody who has no real experience with CH's and who's real-life situation with epilepsy (very much researched) might lead one to believe that "something", might work if you try enough variety of pills.
So that's my story. I'm going to continue checking out the site and hopefully posting, whether my clusters stick around or not.
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Superpain
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Re: Hello to U all! Advice please......
« Reply #4 on: Jul 4th, 2004, 6:31am » |
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Dude... 
Joy and Leo....
This has to be the best first post thread I've ever seen!
It makes me proud of DJ, and I'm sure that he feels the same as well. That's what this place is about, and I have to commend Joy on finding it for you and you getting your ass in here!
You were treated by one of the finest headache clinics, but that was five yrs ago...
I went 18 yrs doing the exact same thing. I got diagnosed at 15, my first cycle, but there was just nothing that was effective, so I learned to deal with the pain and go on.
You don't have to do that anymore. The information and experience of thousands of people are right here with easy access.
Read up.
Tried O2?
Imitex shots? Pills are useless (to me)...
Beindg an informed patient (with a good, or willing Doc.) is your best defense.
If you're out of cycle that's even better... But this place and OUCH can work miracles when you're getting hit. 
You're a very cool friend Joy.
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Chris
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Superpain
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Re: Hello to U all! Advice please......
« Reply #5 on: Jul 4th, 2004, 6:38am » |
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on Jul 3rd, 2004, 7:40pm, miapet wrote:Hi tinkster . . .welcome to the board . . .sorry to hear about your friend.
I would second forgetfulnot's post with a twist . . .get him here when he's able to sit at a screen . . .when I came here, D was just too sick to be able to sit at the computer . .in fact, when he would try to read (computer or otherwise), it would trigger a h/a . . .and he was getting hit way to often.
Without knowing what he has / hasn't tried . . .how is he fighting them now?
I don't know if you are around your friend when he has his h/as . . .but if you are, you should talk to him when he's not having one, to see what you can do to help when he is . . . maybe he'll want ice etc, maybe he'll want to be left alone . . .but at least you'll know.
Other than, be as educated as you can be . . . and help him find this site . . .
*positive light and energy*
miapet |
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Oh yeah, and miapet is an excellent source for dealing with being a supporter... She sounded alot like you one day looking for help. And now D is posting because of her initial and continuing research and support.
It speaks volumes of both of you.
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Chris
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don
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Re: Hello to U all! Advice please......
« Reply #6 on: Jul 4th, 2004, 8:06am » |
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Quote:| I believe one of the few I didn't try was Imitrex, as it was decided my CH's peaked too fast for it to do much good |
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Probably the most effective abortive available. Have you tried the injections.
My CH go from 0-9 in less than 3 minutes but are aborted in the same amount of time with an injection.
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miapet
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Re: Hello to U all! Advice please......
« Reply #7 on: Jul 4th, 2004, 10:18am » |
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Welcome to the board Leo . .sorry you are a member . . but welcome you anyway *smiles*. D is my other half . .he has only recently started posting. Like you, he was fed up with pharmacy, and we were both concerned about both the short and long trem side-effects. As Superpain suggested, o2 (with the right mask and 10-15 lpm) can really help! D says it took him to the top and back down, but did it quickly. It also seems the least invasive.
Thanks Superpain . . .you all were more than helpful for us . . . I will never be able to thank you all enough for sharing your time, your experiences, your acceptance, and most of all . . .your caring . . .I became more educated about CH then most doctors *L* all thanks to this site and the first hand experience of loving a clusterhead!! Pity the doctor or nurse who gets in our way *L*
*positive light and energy*
miapet
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Leo
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Re: Hello to U all! Advice please......
« Reply #8 on: Jul 4th, 2004, 12:36pm » |
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miapet
Thanks for the welcome!
I have tried extensive oxygen therapy, both at home and in a controlled clinical environment. It was administered properly, and it didn't work.
Merle was definately an understanding and willing DR.. To say that she approached my CH's very aggressively is an understatement.
It was their desire not to use Imitrek injections. I don't recall if I tried the oral or not. That was the consensus after discussion with 2 other headache specialists. For whatever reason, they didn't want me on that.
I had to look up the scale, but basically I go from 0-10 in about 2 to 4 minutes. I linger at a 10 for 5 minutes or so before they settle into a 9. That holds for another 5 to 10 minutes and drops to a 7. I go back from a 7 to 0 when it's time, they don't diminish but rather just disappear. I don't know what a 1-6 is at all, I've never been that lucky. They typically last 35 to 45 minutes total.
Leo
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tinkster45
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Re: Hello to U all! Advice please......
« Reply #9 on: Jul 4th, 2004, 1:59pm » |
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Hello and Happy 4th of July
Thanks much for the replies... As I had hoped when I first posted here, Leo would join in. Although very reluctant to try any new meds, at least he is here where he can keep himself informed which was my goal.
Miapet.... No I have never witnessed a cluster headache as we both live in different states and the cycles have not coincided with our visits. I have witnessed brutal epileptic seizures with my daughter and the feelings of helplessness you have that goes with it. I wanted to try to be prepared for them as best as I could as I imagine they are very scarey at best. I admire you and hope to learn from you and the others here.
Superpain........ so glad you liked our post! as you can probably tell its been a touch and go situation with us.. he is so against medical intervention and its the only life I have known but hes here now where he can learn from you guys.. I can live with any decision as long as its an informed decisions. Best wishes to you! your nick alone makes me saddened that someone should have to live life with so much pain.. big hugs!
Forgetfulnot.. I got his ass in here  and you all have given him some great tippers and a place to be at home at if he will use it! Thanks
and LEO... I know that I do not understand and never truly will.. but now you are here where these people do... I hope you can find answers, help and most of all support from people that do understand just exactly what your going through as I have found that support in my epilepsy group.. it is a lifesaver!
Joy
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don
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Re: Hello to U all! Advice please......
« Reply #10 on: Jul 4th, 2004, 5:10pm » |
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I would be curious to know why a headache "specialist" would not want you to try the most effective abortive available.
Just what meds did Diamond prescribe?
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| « Last Edit: Jul 4th, 2004, 5:10pm by don » |
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Woobie
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Re: Hello to U all! Advice please......
« Reply #11 on: Jul 4th, 2004, 7:29pm » |
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Maybe he has a heart condition??? Other than that - i dont understand it either...
but - i've heard nothin nice about the Diamond Headache Clinic.... until now. 
Hey Leo - you got a good friend there - and welcome home! Stick around.. you'll like it here.
tina 
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Kris_in_SJ
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Re: Hello to U all! Advice please......
« Reply #12 on: Jul 4th, 2004, 8:54pm » |
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I'm so sorry you have to be here, but so glad you found it!
There's a wealth of information and support on this site, and people who not only understand, but have been (or still are) there.
If I have only one thing I'd urge you to do, it would be to get a script for injectible Imitrex. You've gone the O2 route without success - Imitrex is the only other "best" treatment out there. I also have clusters that go from 3-10 in a matter of a minute, but a Trex injection makes them disappear within 3-4 minutes.
I also have fairly severe hypertension - I merely explained to my doc that I would rather brave a possible heart attack or stroke than suffer that way any longer. End result - he prescribed, I get relief, no stroke or heart attack!
Please don't brave it out any longer. There are new meds and good abortives out there.
Sending you hugs and good wishes,
Kris
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Charlie
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Re: Hello to U all! Advice please......
« Reply #13 on: Jul 5th, 2004, 9:11am » |
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Welcome aboard. If you stick around you will find some good ideas and ways to deal with this horror....some of them pretty good.
I'm 57 and have had epilepsy for 45 years. I had clusters from age 23 to 45. I've been free of the clusters for 13 years. Nothing beats the combination of CH and epilpesy
I'm very glad my clusters have gone but I'd take them anytime over my little seizures. At least CH rarely keeps someone from driving. I'm always sad to read of other victims.
Your friend might try vigorous exercise, cold water on a hand or leg. Sometiimes these help as does this:
Dr. Wright’s Circulatory Technique
What follows is a technique learned from a neurologist:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.
I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.
Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.
This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
I hope this technique is helpful and I wish you the best of luck
Charlie
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tinkster45
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Re: Hello to U all! Advice please......
« Reply #14 on: Jul 5th, 2004, 10:01am » |
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hello there bob!
I take it you have been unable to control your epilepsy? It sure can be a brutal diasease. In our chat group we have many that are able to drive... but more are not. My daughter has been controlled for 4 years after 8 very very difficult ones, almost lost her quiet a few times and they always seemed to come at the most worst possible place and time ..... What I am finding here that some of the first line epileptic drugs are also used for the clusters....
I am very glad you have beaten the headaches and hope my friend can to. And keep up the work on the epilepsy maybe there's a cocktail that will work for you! We have several in support that have had great results with the implanted magnet and check back to the where ya from post you yankee . Take care!
Joy
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tinkster45
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Re: Hello to U all! Advice please......
« Reply #15 on: Jul 5th, 2004, 10:03am » |
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OPPS sorry about that CHARLIE!!!
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miapet
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Re: Hello to U all! Advice please......
« Reply #16 on: Jul 5th, 2004, 10:41am » |
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Joy, a lot of drugs are 'tried' for clusters . . with various degrees of success . . and side-effects . . .I would encourage you to read about how successful they are, and what the side-effects are . . .some of them are really scary . .
*positive light and energy*
miapet
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| « Last Edit: Jul 5th, 2004, 10:43am by miapet » |
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tinkster45
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Re: Hello to U all! Advice please......
« Reply #17 on: Jul 5th, 2004, 11:13am » |
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Morning miapet!
I have been reading on that. I guess you kind of red my thoughts..... stash a few of my daughters depakotes in leo's food... just kidding
I think from reading so far not to many of the drugs do have a great impact  which has been Leo's point to me all along.
Have a great day!
Joy
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miapet
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Re: Hello to U all! Advice please......
« Reply #18 on: Jul 5th, 2004, 9:13pm » |
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Joy . . .
Your daughter must have frontal-lobe activity . . .I'm glad you found the depakote for her *smiles*
I truly hope that you and Leo find what works for him *smiles*
Our clusterheads are truly fabulous, brave, strong people . . . I wish them all p/f days and nights . . .
Oh, and safe-effective tools to kick the beast to the curb!
*positive light and energy*
mia
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tinkster45
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Re: Hello to U all! Advice please......
« Reply #19 on: Jul 5th, 2004, 11:06pm » |
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Miapet. She has a mixed pattern. The depakote is just one of her "cocktail mix " .. It was the last drug added that finally achieved control. YEEHAW! Life again
I imagine ya'll live much like we do. Even when ya have control your still always looking over your shoulder and wondering if or when it will hit.. The longer we go with control the more comfortable we are but I guess we will never be free from total worry.
I have posted something about a medical device my daughter has that is also used for pain control that might be of interest to some here.. not sure..
Joy
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miapet
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Re: Hello to U all! Advice please......
« Reply #20 on: Jul 6th, 2004, 4:33am » |
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I'm glad y'all found the right 'cocktail' . .. I'm sure it's a relief and joy for your entire family!
As for pain-control and CH . . .so far, I don't know of anything like the tube.. . .it's more about a: aborting that particular h/a, and b: aborting the cycle. I don't know if anyone has tried anything like the item you discussed on the other board. I'm sure, if anyone has tried it, they will let you know *smiles*
I do know that traditional pain medications cause rebound h/as for a lot of people.
*positive light and energy*
mia
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Lobster
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Re: Hello to U all! Advice please......
« Reply #21 on: Jul 6th, 2004, 7:54am » |
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on Jul 4th, 2004, 5:10pm, don wrote:I would be curious to know why a headache "specialist" would not want you to try the most effective abortive available.
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Indeed. Not much of a 'specialist' if they have not tried the various nasal and injectable triptan aborts.
Oral is not an option for CH, unless you are big into the pain thingy.
Lobstah
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Charlie
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Re: Hello to U all! Advice please......
« Reply #22 on: Jul 6th, 2004, 8:45am » |
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Joy:
I'm looking into the VNS magnet therapy for the first time. Doctor is thinking of trying it. I'm a clumsy type so I want to be sure I can deal with it. Not crazy about a couple of possible side effects.
I have not had a CH attack in 13 years. I took very little medicine when I had the things. Inderal worked for me. There is some evidence of an age factor for CH but I was 45 when they ended. That seems young to me....not that I'm complaining.
Very glad your daughter has had what looks like success with the seizures. There is a very common age factor in children with seizures though. They often "outgrow" the things.
Continued success.
Charlie
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| « Last Edit: Jul 6th, 2004, 8:46am by Charlie » |
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tinkster45
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Re: Hello to U all! Advice please......
« Reply #23 on: Jul 6th, 2004, 10:37am » |
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Morning charlie!
Best wishes to you if you do decide to try it! We have others tried the MUCH more invasion surgies to remove the ??? point of origin from the brain.. VERY varried results and very drastic. Fortunely the VNS is a very minor surgery ( if any surgery is minor) and both of those who I know that had it, it was done on outpatient.
My daughter has epilepsy secondary to CP (brain damage) so she wont out grown them but we have control at best but 4 years of it!! I wish that for you also!
Am so glad you have licked the monster as they call it here.. I so hope my friend will be able to find that here. I just cannot imagine having to deal with that scale of pain on a regular basis. My heart goes out to all of you here!
Joy
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Leo
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Re: Hello to U all! Advice please......
« Reply #24 on: Jul 6th, 2004, 9:11pm » |
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<b>I would be curious to know why a headache "specialist" would not want you to try the most effective abortive available.</b>
I want to clear this up. Bear with me, cause I don't like some of the suggestions I've heard about DHClinic and my Drs. not being aggressive enough. I refer you to my first post here:
<b>"and I've gone through the majority of cluster medications with no success."</b>
I should elaborate. There's two on the "medication survey" which I've never tried, one of which was against the advice of 3 doctors.
None of which worked..... something which the surveys on this site tend to bear out as well. I don't see any of them with a huge preponderence of success across the board.
Just wanted to clear that up, cause I keep getting the impression that a few think my Dr. is stupid or something. Diamond was researching and treating headaches a LONG time before anybody else cared to.
Leo
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