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Topic: DHEA (Read 4405 times) |
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y2kdon
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In February 2001, my cluster headaches cycle was about every two months. My prescription drug plan had stopped my Imitrex because I had reached the limit of milligrams that could be taken in any 90 day period. I had to get a special requet from my doctor to override the limit.
As all of you know, tha pain was awful and coming on far too often.
I had tried the Topomax (not good results).
I was living on Imitrex which we all know can be very bad on the heart.
Somewhere I read the DHEA nuteritional supplement had some good results with "headaches". So what the heck, I'll try anything once.
I started taking 3-75MG tablets of DHEA daily along with an ongoing presecription for Verapamil.
Since starting this in February of 2001, I have not had any headaches. (except for one that I will tell you about in a minute.)
In sure seems that the DHEA and Verapamil combo has broken my cycle and placed me in remission.
How do I know that the remission is not a natural occurrence and the medication combo was just a coincidence?
Remember I said I had had one headache since starting the DHEA? I tried to stop all medication about four months agoa and within three days I had a mild headache. It didn't last long and wasn't as intense as normal. But it was the same symptoms, weeping eye, pain located right behind the right eyeball, etc.
I immediately restarted the Verapamil and DHEA combo and have not had a recurrence.
DHEA is sold as a nuteritional supplment at about $20 for 300 pills (a 100 day supply). It certainly is cheaper and less intrusive then the heavyweight drugs my doctor has tried on me (Topamax, Imitrex, etc.).
Whle this may not work for everyone, it certainly appears to be a solution for me. At least I hope so. It has been wonderful not facing the CH pain.
I still carry a couple of Imitrex injections just in case. But I have never had to use them in over a year.
Best of luck (to all of us).
Don F
Seminole, FL
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Ueli
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Hi Don, welcome to the club
I'm glad you found something to hold down the CH beast. ;D
Now the question is from where does the success come, is it the DHEA, is it the Verapamil or is it the combination of the two?
For me it is obvious, since
Verapamil is the CH-preventative of first choice
and many people on this board have great success with it.
The DHEA on the other hand is not just another nutritional supplement, but the mother of all hormones. It can prevent AIDS, its lack can cause homosexuality, in short, it is an almost universal cure all. Or at least, that is the claim of those making money with it. Oh yeah, it also can cause heart-rhythm disturbances. 
A quick search on Quackwatch gave 21 articles, one to read as an antidote to the snake oil advertisement is DHEA: Ignore the Hype.
If I where you, I would drop this wonder drug DHEA (I know of a hundred better ways to spend $20) and stick to the Verapamil, upping its dose if necessary.
PFNAD, Ueli
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Marc
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Re: DHEA
« Reply #2 on: Mar 6th, 2002, 10:56am » |
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Ueli,
Thanks for bringing up Quackwatch again.
I think it's an important stop for the newer folks coming here looking for answers.
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y2kdon
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Well, I guess Verapamil by itself is good for some folks. But I have been on the stuff for almost five years and had little success with it by itself. My cycles had gone from six months between to two months between. I had gone from one by the clock CH in the morning and one in the evening to three or four random CH's a day.
For me the only thing that has changed in my medication was the addition of DHEA. After starting it in combo with Verapamil, my cycles ended. period.
As I said in my original posting, after six months of being CH free, I toyed with stopping the DHEA first. WIthin three days I had the tighteness above the eye and that "feeling" of a cycle coming on. I started back on the combo and the symptoms disappeared. I then stop the Verapamil and again within three days I started feeling the same old precursor signs of a cycle.
So apparently for me at least, the combo of the two does do something beneficial. Seperately, they are not effective.
I get the feeling that DHEA is looked on as a old wives' tale cure-all. Don't knock it unless you've tried it. If the two together eliminate that god awful pain, then why not at least try it?
All I can say it I have in last three months I've eaten all of the foods that could normally triggered CHs (peanuts, chocolate, etc.). And I've also been able to enjoy an occasional cocktail with my spouse.
Until I tried the Verapamil and DHEA together, any of the triggers would guarantee a CH in a matter of hours. Since I've started that combo, none of the triggers have occurred.
And who are you to tell me what works and doesn't work for me? Every CH sufferer would be willing to cut off a limb if the pain would just stop. All I know is that the combo I'm taking appears to have gotten me to some form of remission. I'll spend my $20 every three months thank you.
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Bob P
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Shut up Bob!
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Foods
« Reply #4 on: Mar 8th, 2002, 1:35pm » |
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Ahem! Chocolate, peanuts, etc. are migraine triggers. No foods have identified as cluster triggers.
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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Bob P
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Shut up Bob!
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Also
« Reply #5 on: Mar 8th, 2002, 1:40pm » |
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This should make you think twice:
"No one should take DHEA except under the supervision of a physician, who should routinely check steroid and cholesterol levels, glucose tolerance, and prostate health in men," says John Nestle, MD, professor of endocrinology and metabolism at Virginia Commonwealth University, who studies DHEA's effects on diabetes and blood clotting.
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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y2kdon
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this board has bviously deteriorated into one where a few know-it-alls are picking apart and attempting to be negative about every remark made it seems.
It cerainly isn't the board I came to respect when I was looking for help from every source.
Gentlemen, ladies or whoever is responding to this topic. BOB-P, the responder who posted the nice little write up on DHEA should only be approved by a doctor must not have had the opportunity to read the warnings on IMITREX. that basically indicates that the stuff is awful on your heart. So what is this person suggesting in this post on DHEA being so bad? If I have my druthers, I would much rather use a medication that suppresses the CH cycle rather than a drug like IMITREX that just deals with the vascular system at the time of a headache. Maybe neither is good for you, but no pain is better than any pain.
Secondly I haven't seen the FDA pull DHEA from the shelfs.
And whether MR BOb-P has any published research on CH triggers or not, it doesn't take a rocket scientist to know that when you eat or drink something and shortly after get a CH. And it happens everytime you eat or drink that thing, it is a trigger.
I know what foods cause me to go off on a CH (even out of cycle). because it happens every time I touch that food or drink. I've reported this triggering to two different nuerologists and my GP. None of them have even attempted to followup on the triggering substances. Instead they give me IMITREX, TOPAMAX, and the like.
I'm tired of dealing with the symptoms after the attack starts. And by god, the combo I've discussed has prevented the things from ever starting.
This is my last post to this bulletin board because it has obviously been taken over by a couple of know it alls who want to pick apart the posts. too bad they don't have more of a life than sitting around brow-beating bulletin board posts all day.
I'm sorry to see this site go down hill. I gave the audience of CH sufferers what my own experience has been. Nothing more. I was just so happy to have gone so long without a cycle or an isolated CH, I just wanted to share it in hopes it might help someone else.
So long.
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Paco
New Board Newbie
I love YaBB 1G - SP1!
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Re: DHEA
« Reply #7 on: Mar 8th, 2002, 4:21pm » |
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So long. Glad you have all the answers. Too bad most of them are wrong. What a waste. Why not treat yourself to an education on CH by reading the most comprehensive collection of information available? Start clicking the left buttons. BTW, BobP has suffered longer from, and knows more about, clusters than almost everyone, you especially.
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Margi
CH.com Alumnus
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Nuthin like a good neck rub!
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Re: DHEA
« Reply #8 on: Mar 8th, 2002, 4:39pm » |
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And, furthermore, MR. BobP as you refer to him, has probably done more research into cluster drugs and cluster causes than most of us "know-it-alls" here - if not the MOST research. In fact, your term 'know it all' is quite accurate for many here. There are lots of cluster folks here, who've had to educate a few neuros! And that education has come from being a regular here at ch.com and comparing notes with other sufferers and supporters.
If you go to the OUCH library, check out the volumes of research there. Yep, you guessed it. Compiled by MR. BobP. He's right when he says no foods have been identified as cluster triggers. And, it's really RARE for something to set off a cluster headache while a true cluster sufferer is out of cycle as well.
Back to MR. BobP though - because of the years he's put in here and the volume of work he's contributed, THAT's why he's the current President of O.U.C.H.
I'm really glad you've found something to control your headaches. There IS no magic bullet for everyone though. THAT's the FIRST lesson in cluster headache research. Psilocybin has come very close, but I know personally of two exceptions to that rule.
So, before you start attacking folks, you might want to take the suggestion Paco has offered and troll through the work that has already been done for you.
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| « Last Edit: Mar 8th, 2002, 4:48pm by Margi » |
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http://askusaboutourgrandkids.photosite.com/
And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
source unknown
IMHO (which in my universe is correct)
kathy copelin, ch.com 8/8/06
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Bob P
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Shut up Bob!
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Sheeeeeit Dude!
« Reply #9 on: Mar 8th, 2002, 4:46pm » |
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I didn't write it, I just cut n pasted what the doctor wrote. You would rather that I kept info like that a secret from the people here????
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I also didn't write this article about Imitrex not being very bad for you:
Sumatriptan overuse in episodic cluster headache: lack of adverse events, rebound syndromes, drug dependence and tachyphylaxis.
Centonze V, Bassi A, Causarano V, Dalfino L, Cassiano MA, Centonze A, Fabbri L, Albano O.
Dept of Internal Medicine and Public Medicine, University of Bari, Italy.
This observational study was designed to examine the pattern of sumatriptan use in patients with cluster headache using more than the recommended daily dose of subcutaneously injected (s.c.) sumatriptan. Thirteen patients suffering from episodic cluster headache were asked to record the characteristics of their attacks and drug intake for 1 year. All reported a high daily frequency of attacks (more than 3 per day) and the related overuse of s.c. sumatriptan. The results show that the overall incidence of adverse events among patients receiving sumatriptan injections for the treatment of cluster headache is low. The extended administration of this drug in episodic cluster headache did not result in tolerance problems or tachyphylaxis. Only 4 patients experienced minor adverse events and recovered more slowly than the others. They suffered from migraine without aura and cluster headache, and showed a family history of migraine. Even though they must be viewed with caution, due to the observational nature of the study and the low number of patients included, these results suggest that the profile of sumatriptan may differ in cluster headache compared with migraine.
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Now on to triggers. All of the articles by the cluster experts list very few triggers for CH and even then they are triggers only when in an actrive cluster. These are usually limited to alcohol, nitro glycerine, heat, sometimes exercise. Some clusterheads are triggered by other things like smells, twisting the neck and maybe others but very rare.
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I'm glad you are pain free and that you wish the same for all of us here too. We'll keep trying until we find our magic bullet too. Take care and thankyou for sharing some of yourself with us while you were here.
Know that if you ever change your mind and decide to come back to this board, we'll welcome you with open arms as we don't judge people, but we do question treatments.
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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Ueli
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that you've got the impression I were a know-it-all, quite the contrary. I try to expand my knowledge all the time be searching the web. By writing DHEA into a search engine I found the following impressive list of diseases / conditions that can be helped by DHEA:
Chronic Fatigue Syndrome
Schizophrenia
Multiple Sclerosis
Migraine
Epilepsy
Reflex Sympathetic Dystrophy
Male Homosexuality
Breast Cancer
Stress
Tourette’s Syndrome
Obesity
AIDS
Depression
Physical Decline of Old Age
Postpartum Depression
Postpartum Psychosis
Sudden Infant Death Syndrome
Blood Pressure Problems
Panic Disorder
Arteriosclerosis
Alzheimer's Disease
Cancer (in general)
Osteoporosis
Improving Memory
Diabetes
Lupus
Bodybuilding
Cardiovascular Disease
High Cholesterol Levels
Memory Disturbances
Immune System Disorders
I am sure, cluster headaches ore not (yet) in this list because they are such a rare disease.
But I also found on a site selling DHAE: Do not take more than 25 mg DHAE per day. But since you are such an expert on this wonder drug, you are probably save with 9 times that amount, 3 x 75 mg a day. 
on Mar 8th, 2002, 3:58pm, y2kdon wrote:| ... I haven't seen the FDA pull DHEA from the shelfs. |
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The main task of the FDA is to control the safety and efficacy of prescription drugs. As long as the seller of 'food supplement' does only hint, and not outright claim, the dozens of useful benefits, he usually gets past the FDA, who sets his priorities to go after the really harmful stuff, not merely the useless.
Here a quote from the FDA site http://vm.cfsan.fda.gov/~dms/ds-prod.html:
FDA has not evaluated scientific data concerning the safety or purported benefits of most dietary supplement products. The law provides that the manufacturer must make sure that label information is truthful and not misleading. The manufacturer is also responsible for making sure that the dietary ingredients in the supplement are safe. Manufacturers and distributors do not need to register with FDA or get FDA approval before producing or selling dietary supplements.
Following the old Roman law of "cave emptor" (shall the buyer beware) the government doesn't care if the public is ripped off by snake oil salesmen as long they don't sell really harmful stuff.
One question that must always be ask on the news of a wonder drug: Why has the greedy, money grabbing pharma industry not jumped on the bandwagon long ago, included the stuff in a patentable drug and is raking in millions? Could it be that they tested it - and found it useless? (Remember, they have to prove the efficacy to the FDA).
Don, whether you like it or not,
I will continue to tear to shreds any doubtful cluster 'cure'. I feel I owe it to my cluster friends, because: (see my foot line)
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pinksharkmark
New Board Veteran
Clusterhead
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Re: DHEA
« Reply #11 on: Mar 9th, 2002, 7:33am » |
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Well, at the risk of making myself unpopular, I will jump into this discussion.
This quote is from the Quackwatch website article that Ueli linked:
"Dehydroepiandrosterone, or DHEA, is a steroid hormone, a chemical cousin of testosterone and estrogen. It is made from cholesterol by the adrenal glands, which sit atop each kidney. For the first few years of life, the adrenals make very little DHEA. Around age six or seven, they begin churning it out. Production peaks in the mid-20s, when DHEA is the most abundant hormone in circulation."
Hmm. It is interesting that the majority of clusterheads (note my careful use of the word MAJORITY) get their first cluster headache after DHEA production starts to decline.
There is abundant evidence that hormones play a part in CH. The hypothalamus is intimately involved in hormone regulation, and we all know that clusterheads have a defective hypothalamus.
Prednisone is a steroid hormone that affects the adrenal glands, and it undeniably works for a hell of a lot of clusterheads.
Many female clusterheads have posted reports of changes in their standard CH cycles during pregnancy and menopause, when hormone levels change dramatically.
A few clusterheads have posted their experiences with synthetic thyroid hormones.
Melatonin has helped out several clusterheads. Melatonin is a hormone produced by the pineal gland.
Hormones are little understood compounds that have complex and inter-related effects on virtually every area of the body's metabolic processes.
Do I believe that DHEA is effective in miraculously curing every one of the long shopping list of conditions Ueli provided? Nope.
Do I believe it is scientifically sound to presume that it has an effect on at least SOME of those conditions? Definitely.
Do I believe that it is premature to reject y2kdon's report out of hand? Definitely.
pinky
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| « Last Edit: Mar 10th, 2002, 1:29pm by pinksharkmark » |
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