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Topic: recommendations from minnesota herbalist (Read 541 times) |
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nani
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Re: recommendations from minnesota herbalist
« Reply #1 on: Aug 9th, 2005, 5:36pm » |
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Here's a link for feverfew
http://med-owl.com/clusterheadaches/tiki-index.php?page=Feverfew
I've heard Butterburr discussed here before, but have no earthly idea what was said about it. 
edited to add: at the bottom of the feverfew article there's a link to butterbur (petadolex).
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| « Last Edit: Aug 9th, 2005, 5:37pm by nani » |
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LeLimey
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Re: recommendations from minnesota herbalist
« Reply #2 on: Aug 9th, 2005, 5:46pm » |
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I know that Lizzie2 is trying petadolex at the moment, you might want to drop her an IM to discuss it further with her if that helps?
I'm afraid I don't know anything much about it either but I know she has done quite a bit of research into it including better brands to buy owing to impurities etc so I'd recommend talking to her if you are thinking of it!
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vig
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Re: recommendations from minnesota herbalist
« Reply #3 on: Aug 9th, 2005, 6:32pm » |
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I tried FeverFew before...
nothing.
anyway, it's good to get some numbers...
count 'em up...
anybody else?
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bnfreeman
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Re: recommendations from minnesota herbalist
« Reply #4 on: Aug 9th, 2005, 6:33pm » |
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I tried the feverfew before I knew I had clusters and was being treated for migraines. It didn't help. I was told it was used for migraines. Don't know about the other.
BF
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SteCo
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Re: recommendations from minnesota herbalist
« Reply #5 on: Aug 10th, 2005, 10:33am » |
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I tried the feverfew many years ago. I always did the tincture as it was supposed to be the purest/strongest. IIRC correctly, it takes some time to build up in your body so I would take several doses daily and at the onset of an attack I would do tons of drops in water. YUK!! For low level kips it kinda helped some? (could have been a fluke too)...but for higher level ones.....forget it.
Probably better to keep looking for something else.
SteCo
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Jeepgun
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Re: recommendations from minnesota herbalist
« Reply #6 on: Aug 10th, 2005, 10:41am » |
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I've tried feverfew, peppermint oil, lavender oil, mugwort, and some other stuff that I can't remember the name of. None of it worked worth a shit.
The only thing herbal that helped, was kudzu extract, taken in pill form, 750mg/pill, two pills, T.I.D.
Other than that, none of the herbal remedies did a damn thing for me. Your mileage may vary.
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| « Last Edit: Aug 10th, 2005, 10:43am by Jeepgun » |
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pattik
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Re: recommendations from minnesota herbalist
« Reply #7 on: Aug 10th, 2005, 11:10am » |
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No luck here either with feverfew. 
PK
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floridian
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Re: recommendations from minnesota herbalist
« Reply #8 on: Aug 10th, 2005, 12:03pm » |
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Kudzu has the best track record - for many people, it has a dramatic dampening effect within a day or two.
Feverfew doesn't have a good anecdotal record, but the active ingredient is pretty fragile, and many feverfew preparations are worthless. If you can find a standardized formula with a guaranteed level of parthenolide, it might be worth a try, but it is not clear if even that is beneficial.
Lizzie is the only person I know trying the butterbur (petadolex) - so the jury is still out, and will be for a while.
Other herbs I think might be of benefit include green tea, turmeric/curcumin, and CGRP blockers like 'blood of the dragon' and keishi-bukuryo-something or other.
Also, maritime pine bark extract (or grape seed extract, aka OPCs, aka pycnogenol) stimulates lipolysis, which is abnormally low in clusterheads and linked to night-time attacks.
Ginseng stimulates nitric oxide, and may be a trigger (as is viagra/nitroglycerin/alcohol).
There are write ups on these at www.med-owl.com/clusterheadaches/... use the index page or search box to find the herbs of interest.
Other 'natural' treatments include melatonin, magnesium, the detox-diet, water-water-water, oxygen and B-vitamins.
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| « Last Edit: Aug 10th, 2005, 12:05pm by floridian » |
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Leggs
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Re: recommendations from minnesota herbalist
« Reply #9 on: Aug 10th, 2005, 1:34pm » |
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Tried feverfew, it did squat for clusters.
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Lizzie2
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Re: recommendations from minnesota herbalist
« Reply #10 on: Aug 12th, 2005, 1:46am » |
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Yes it seems the biggest problem with feverfew and petadolex is that they really appear to be most effective for migraine sufferers.
I have very limited experience with feverfew. I took it as part of a product called Migralieve which contained feverfew, riboflavin, and magnesium. Honestly, I never noticed a change from that stuff. Then later I found out that feverfew can prolong clotting time....and I have some blood clotting issues, so now I definitely have to avoid it!
As far as the petadolex.....that's the German brand that has a patent on butterbur. It's a little on the pricey side, but I did figure it was worth a try. My neuro recommended it at my last visit. There are directions on the box (which has a picture of someone holding their head - as at least 2 studies have been published on petadolex and migraine, specifically) - but my neuro had me do a slightly different schedule than on the box because of my history of experiencing some extreme side effects from various meds. (I make my neuro nervous LOL)
The thing about petadolex is that it really has not had significant side effects for most people. I do believe that liver function has been mentioned (I'll look it up tomorrow), so that would mean some blood work would need to be done to monitor liver function. The downside is that they are not sure of what medications or other herbals the petadolex may interact with. My neuro told me that if I do start to experience any negative side effects, then it is most likely related to a med that I'm on reacting badly to the petadolex rather than the petadolex causing a side effect on its own.
I've only been on it for slightly less than a month - and I haven't even gotten up to the full schedule as quickly as I should have. It can take a good long while before any results are seen. To tell the honest truth, my daily migraine and also my clusters got MUCH worse at the end of June, and I have not noted any change since starting the petadolex, but it IS too early to give a verdict on it!
I do just wish something would help... 
I'd tried the Kudzu and was very excited about my initial results with it. However, after a week, I had quite a bad episode that my physicians felt were related to the Kudzu, so I was pulled off it. Now my current neuro and also one other phsyician feel that there is good merit to my trying Kudzu again (as it helped both my CH and migraine in a very short period of time!), but maybe I just need to increase my dose more slowly and maybe not go as high up on it. We'll see! I really still feel that Kudzu has shown some major promise with the CH world!!
So...that's my input on feverfew and petadolex, specifically, with Kudzu commentary thrown in for extra measure.  I'll post an update about the petadolex at some point. Honestly, it's just a blind test to see if it helps the CH. I don't really know anyone with CH who has even tried the petadolex, and my neuro even said that he wasn't sure it would help CH at all, but he did have good evidence just from practice that it helps some with even extremely difficult daily migraine.
Here's the site where I purchased my petadolex from...I feel it is very reliable and even does reduce the price some!
http://www.betterhealthinternational.com
I've always felt that I'm willing to try most anything recommended just as a test... Of course, that mentality has gotten me into serious trouble with my trials of medications and herbals alike at times! I've learned to be slightly more cautious, given my history!
Best of luck!
Carrie/Lizzie2
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Leggs
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Re: recommendations from minnesota herbalist
« Reply #11 on: Aug 12th, 2005, 6:52am » |
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It's great Carrie/Lizzie that you have a nuero willing to try non traditional things.
You are the only person here I recall who was told they have migraine AND CH. I had that issue also, but the migraines totally stopped when I had my equipment removed 3 years ago. It was SO NUTTY dealing with two things at once.
I have some weird reactions to things, like making me feel 10 feet tall and feet not touching the ground when I am walkng (and that's jut codeine) but mostly, I am totally sedated and can't function, and I have to deal with taking care of my kids so I just opt for the pain. What kind of side effects do you have?
I am on the kudzu. I am sorry it didn't work for you. It helped me through my July cycle, and I am down to half, afraid to go off. One thing I want to say about your problem with kudzu and the headache the docs say may have been from the kudzu. Since it was so terrible, it was good they took you off, but I was my own personal guinea pig. I was having the TOP, #1 worst kip 10++++ CH I ever had, and I had no neuro. I think my husband thought I was wacko, he had never seen me like that....This was the day after I started the kudzu. The first day was fine, and BAM, it hit me so hard. I WAS coming off other stuff though, and I had no options, well no options but the emergency room. I just stuck with it, iced my neck and head, and the next day, I busted out of cycle, and have had only a few kip 5s and shadows since.
It is really crazy dealing with this CH stuff, and then having something else going on. Now the migraines are gone, but I am having some facial/scalp neuralgia mystery they are still trying to figure out. Then we throw in the fact I wack out from most treatments (btw, do you do oxygen??) and I am really limited. That's why I have been keeping up with you and the petadolex...I feel for you, at least my migraines are gone.
Hugs and PFD to you sweetie!
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Lizzie2
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Re: recommendations from minnesota herbalist
« Reply #12 on: Aug 12th, 2005, 8:24am » |
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Hiya
There are actually quite a few people here with both migraine and CH. I'm not really sure how many there are with a daily migraine and then CH as well, but that's basically what gets me. I also have Basilar Migraine, which has an aura that can literally cause me to have some disorientation for a little while, as well as extreme vertigo, vision problems, and some other things that come along with that. Since going on Lamictal, I haven't had any other basilar migraine auras, but fingers are still crossed that it won't return!
Now...as far as medication reactions... They've been anywhere from a severe allergic reaction, to my heart going into supraventricular tachycardia, to very high blood pressure, and at the very worst - a couple of episodes of anticholinergic toxicity - the last of which had left me unresponsive for about 5 hours or so in the ER. We've just had some seriously scary things that always make my neuro extra cautious. Oh and I guess you could call this a side effect although I'd rather call it an adverse event - I have avascular necrosis of both knees from taking steroids and combining that with my natural body makeup.
So with the Kudzu - what happened to me wasn't a bad headache episode, and my neuro would have rathered that I not stop it, but it wasn't up to him. It was up to ENT, hematology, and the pharmacy department. I had sinus surgery in March of this year to repair a deviated septum and remove scar tissue remaining from a surgery to remove a tumor I'd had 8 years prior. The surgery went well, but I had a lot of post-op problems and had to stay overnight. After that, I had some bleeding issues - one of which landed me in the ER, but turned out that I was stable and they sent me to the ENT the next morning for cautery.
Then, in mid-April, I had not had a bleeding episode for 2 weeks. I'd JUST been to my ENT and he said things were healing great. Everything was headed in the right direction. I'd started the Kudzu about a week prior, and I was already seeing some positive results. Nothing else had changed as far as medications, etc. Then one night an hour and a half after I'd gotten home from working in the ER, I had a massive hemorrhage (nosebleed). I won't go into the specifics now,but basically I lost about a half litre of blood. It took a good long while for them to get it basically stopped in the ER. I'll have to say that I did not enjoy the endless suctioning required to try to clear enough of the blood so that they could see better! I was choking on clots the size of golf balls. My friend from the ER sat with me, and even he was getting really nervous. The nurse told me a few days later that he'd been worried about the amount of blood, too...although at the time he was trying to calm my worries by telling me that it wasn't that much blood.
Soooooooo - later that afternoon, I was taken to the OR. When they went in, they saw diffuse oozing and capillary instability that they had said was something they'd never seen before this far out after surgery. This surgery took them 20 minutes - they cauterized anything and everything they could. I have had very little bleeding since then, thank goodness!!
I still have horrible sinus problems, but my ENT has now cancelled two appts - one in June and one that was supposed to be next week - so I'm not being followed very well in this still post-op period, which makes me a little upset!
So in the end - that's why I was pulled off the Kudzu. I was lucky the bleed was in my nose because I saw the blood immediately and was able to get help before I lost too much blood. However, in the long run, we can't be positive exactly what kind of role Kudzu may have played - how much may have had to do with other medications interacting with Kudzu, etc. So at some point, I may give it another try!
Well...I've to get ready for physical therapy (post bilateral knee surgery for the AVN), and my daily migraine has been pretty severe this morning...so these are the times I sure wish something like the petadolex would actually help.
Time will tell!! Best of luck with everything!
Carrie
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