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Butterbur Petasin

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Post by Kaz Sun May 01, 2011 8:37 pm

Just wondered if anyone has tried Butterbur for migraine?

Reading up on it, it seems you need 150mg daily for it to be effective (so this could potentially work out very expensive)

However, I've found some that are cheaper on Amazon.... might give it a go!

If anyone has tried it, I'd be very interested to hear if it had any effect at all?

Kaz

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Post by Tee Sun May 01, 2011 10:18 pm

Sorry - I got as far as buying some - but never actually took it..... Can not remember why now - but I did get mine from a local herbalist and yes it was not cheap..

Let us know how you get on....

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Post by Sarah Sun May 01, 2011 10:40 pm

I tried it. I really can't remember the dosage, but I found it upset my stomach, so I probably wasn't able to give it a full trial.

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Post by ochre Sat Sep 17, 2011 9:48 pm

Hi,
I have used Butterbur for several years. It is expensive and tastes disgusting with a lot of repeating (burps) which taste like soil!
However, it works very well for me, reducing the length and intensity of attacks, allowing me to be a little less strict with monitoring triggers. It also reduces my hay fever symptoms and other allergies.

This has been trialled as a drug in Germany, so it can be very helpful. It is becoming hard to obtain, and you need to take it for at least 6 months of the year for best results (in blocks of a couple of months each time).

Hope that helps.

Ochre

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Post by whatgoes? Tue Sep 27, 2011 8:45 am

Hi everyone;
I saw my General Practitioner today which was a really good visit. It is hard to have a condition that ones doctors are not familiar with but you have done lots of reading about. I told him I hated even remotely attempting to tell him his job, but if he were interested I could share what I have learned in my research. He was really good about it and when I mentioned some things you all have posted, he was in agreement to start giving some a try. He ordered one of the blood pressure meds and sent me to the compounding pharmacy to get the Butterbur and Feverfew. That is very, very unusual for doctors here, as they are not into alternative medicine, herbal remedies, etc.. I am not sure if the improvement I have had this afternoon is in relation to the Butterbur and Feverfew, but what ever the case, it has been bliss. Please just let it continue. The lady at the compounding pharmacy was telling me how good the Butterbur is for conditions when increase of circulation is desired in the brain. I also purchased another product I have used for the peripheral neuropathy that is amazing too. It is called Benfotiamine which is a synthetic B1. It is synthetic for a reason because this takes the B1 from it's natural water soluble state to a lipid based. This allows it to stay in the system longer and for better intercellular uptake. I had for gotten about this little gem and that it is far more favorable than Lyrica or some of the other gaga??? similar products. I am so glad she reminded me about it as I really liked this product but had run out and well the old brain doesn't remember things all the time anymore. Hope you are feeling well today. Best wishes, Jerri

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Post by usedtobejolly Tue Sep 27, 2011 7:59 pm

Hi

Just wondering, since you mention Lyrica, whether you have any experience with it. I have been taking it for about six weeks now. I have been prescribed it for central sensitisation and chronic migraine, and I think the doctor is hoping that it will make the CS die down, and then we can treat the migraine. I definitely feel a whole lot better since taking it, but also feel better because I have finally found someone who listens to me.

x

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Post by whatgoes? Wed Sep 28, 2011 1:08 pm

Yes I have used Lyrica for several years and it is wonderful for problems related to the nervous system. In my case that is Fibromyalgia and Peripheral Neuropathy. There were some issues that came up while I was taking it, including mental clearly, speaking problems, worse yet was that my blood pressure soared to 200 /100 despite the fact that I was water jogging a mile almost everyday. I had to quit my exercise program and it has taken over a year to get my blood pressure regulated. During that time I came off of Lyrica which can for some people be very tricky. I did a step down, very slowly, 25mgs each week or longer depending on how bad my symptoms were. My experiences seemed like what I hear it is like to go cold turkey from street drug addiction. I suffered horribly for 3 months with sweats, chills, tremors, truly awful stuff. My neurologist said "Yes, it is a very addictive product." However I have also heard that others have no such problems. We are all different. Now I am taking Benfotiamine an OTC product, synthetic B1 (Thiamine) that is fat soluble rather than water soluble. It is created so it will enter the cellular level easier. Thiamine is important for the brain and Neurotransmitter purposes. I am paying about $20 a bottle for 60 caps of 104 mg each. It says to take 2 - 3 caps daily. It has been a lifesaver in regards to my peripheral neuropathy, which would waken me numerous times each night. When I ran out of the Benfotiamine during my HM spells, I had to resort to very small doses of Lyrica (I opened the caps and just took small amounts) just enough to stop the pain, burning, numbness and pins feelings. Yesterday I got a new supply of Benfotiamine and am so relieved as I really think me and Lyrica are not a good team. I really wish you the best in using Lyrica, but shard this so if you see a problem you may want to consider weaning off ASAP. The Benfotiamine may be something to consider too.

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Post by usedtobejolly Wed Sep 28, 2011 9:33 pm

Hi

Thanks for your reply. I already had very poor mental clarity and problems articulating! They were some of the symptoms I was having with the CS and Migraine Aura. Although since I have been taking Lyrica (pregabalin) I have noticed that sometimes, first thing in the morning I am trying to speak to my husband, and either gobbledegook comes out or the wrong words, and I am very aware that I am trying to say things and what is coming out of my mouth is different. But this is only when I am sort of half asleep.

I started the Pregabalin on 5th August, and week by week have been increasing the dose by 75mg a week. The doctor was not sure that I would be able to tolerate it, and it was confusing for me to know what side effects I was having because most of the side effects listed on the leaflet were symptoms I was already having. I am now on 300mg in the morning and 300mg in the evening, which I think is the dost the doctor wanted me to get to.

On some days I actually feel that I could work again, which is obvously really important

I have noted your point about high blood pressure and will get mine tested.

I am now sleeping through the night, and am no longer feeling the crashing daily fatigue, and I think am somehow feeling more human and more myself. I think I was also suffering from very bad anxiety. I am currently starting DAY FIVE ! of feeling OK, that is no major symptoms, and I can get on and do a few things. I have still had headaches most days but they are manageable. This is a dramatic improvement.

It's interesting what you write about the B vitamins, and I am sorry you had such a bad time with Lyrica, I hope your current regime continues to be helpful for you. if/when I have to stop taking it, I will wean myself off very slowly.

Thanks again and good luck.
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Post by whatgoes? Sun Oct 02, 2011 12:55 pm

Hip Hip Hurrah on 5 good days. That is fantastic!! Hopefully this will continue. Yes, they had me keep increasing the levels of Pregabaline / Lyrica too and I felt just as you said, good on one hand and not sure if those were side effects on the other. Just keep a watch on it. If it had not been for my blood pressure soaring and the slurred speech problem I would likely still be taking 175 mgs 2 - 3 times a day. Like I said when the nerve pain is bad, I take it in small doses. My neuro thought that was really smart although I am not really sure how much I am taking each time. But one 175 cap lasts me at least a day and sometimes I don't take it at all.

I thought it was interesting what you say about the problems first thing in the morning. I have a hard time waking up and getting going every day and I have noticed that my really bad time is first thing in the morning. Since the big HM I had on Aug 23 that is how I am too. It just takes me a while to get past the fuzzy brain, walk like a drunkard, and my voice sounds really deep and garbled. The sad thing is that around 10p I am really cranking mentally and sadly it is time to start telling myself it is time to shut down.

Another problem I encountered with this last big episode was that I learned the generic brand of meds for my hypothyroidism was not working right. My numbers had dropped and since my numbers never really say my thyroid is off, (it happens with some people) this meant I was bottom of the barrel. The gravelly voice problem I have in the morning is one of the hypothyroid symptoms. Last night I decided to take my medication at night instead of first thing in the morning to see if that helped. Not only did it but I did not have the peripheral neuropathy problems this morning either. PN is hands, arms, sometimes feet, legs, and my stomach, all feeling very hot to the touch. On top of that, pins and needles, prickly, and throbbing pain. FYI I mentioned this to at my new neuro visit and he said that is not PN, that was one thing he told me that confused me. What ever it is it is HORRIBLE and one reason I take the Lyrica.

Again, Congrats on some good days and lets hope this med really keeps working for you. I am over here cheering for you.

Also wanted to tell you THANK YOU for those who have posted about Butterbur. It is great, pricey but it helps along with feverfew, vitamin Bs and Magnesium. I am very happy with the progress I have seen since coming to this forum. Bless you all.

Jerri

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