Despondent and disappointed

Hi,

I am sure I am not alone with this feeling when you think you have found something to help with this pain and then your hopes become dashed after a few weeks.

I am talking about Butterbur, I had such great hopes. After only a week of taking it I then had almost two weeks completely pain free, no daily head pain that I had been getting and nearly three weeks without a full blown Migraine. I had a full migraine Saturday, then Tuesday the daily head pains returned and continue today. No I will continue taking the Butterbur afterall I now have a stock of them, but I feel gutted that these daily headaches are back. Sorry if it sounds like self pity but after months of these daily pains I truly hoped I had found the answer.

Peter

I'm sorry to hear that Peter. I (and probably many on this forum) have had the same thing happen. You get so excited that something has finally worked, and then it all returns. Maybe at least it will help some. Keep taking it and let us know.

Well on the plus side you did get a break. Hopefully it will lessen them - the frequency and severity.

Just hoping it turns around for you. I'm taking this too but have only been on it a week so no change for me yet.

Until someone who counts takes us seriously this is all we can do Peter.
And it sucks....

Hi Peter

I started Butterbur last week. I’ve been burned too much to put my hopes into anything these days. All I expect for is a bit of relief, hoping my handful of daily suppliments will add up to some sort of easement. If I thought Butterbur or anything else was the answer or a cure, this forum wouldn’t be here and there wouldn’t be so many suffers our there.

In all honesty, as I swallow down the magnesium, butterbur, Coq10, B12 & hormone regulators, I wonder if all this crap really matters. A sprinkle of leaves and a dash of minerals. Like a raindrop trying to stop a fire. But, I feel I have to try.

Sorry you are feeling down. At least it is a low cost, low risk experiment, and maybe it is too soon to judge. I read that 3 months is a good indiction.

Angela

Actually Angela pretty much summed it up. If any of this stuff really worked, we wouldn't be here.
I don't recall anything on this forum making much of a difference. The only success stories are from abortives and pain killers.

It doesn't sound like self pity. You are human. Of course you're disappointed. I think it's a good move to keep taking it. You are in the early days. I am taking it as well. Your story is disheartening. But, as I said, continuing it is the way to go otherwise you will never know for sure.

Hi Peter

I'm so sorry you've had setbacks. It's so horrible when you get your expectations up, which naturally you do when things begin to improve, only to have them dashed.

I suppose it's unlikely to be a complete cure but maybe you will have another migraine-free phase soon.

I hope so.

Liz

Pen, we all count. We do not need "someone who counts"...we need someone to count us.

I gave up on the Amitriptilyne. Besides causing headaches, all of the other side affects scared the daylights out of me. I have some Roxicet (?) but that has started causing my blood pressure to really drop (94/43). So, no more of the good pain killer. I'm back on OTC aspirin/acetaminiphen/caffien. It takes the edge off, but won't kill the pain. If I get a real bad one, it will be a trip to the ER. These worked for a little while, but like you guys, things changed.

Hal

I had the most terrifying time of my life when on Amitripilyn. And I have had some terrifying times.

I felt the same way when I had my first migraine on topamax when I realized that it wasn't going to be a cure. I felt so good on it at first I started ignoring all my triggers and that got me back to square one. Butterbur still may be helpful, so I would continue using it. Keep a diary so you can look at it objectively.

I often wonder why this happens. It is a placebo effect in the beginning or do our bodies eventually learn to override the medication? And if our bodies get "used to it" requiring more to get the desired effect, what is the mechanism for it?

Well 12 days no migraine, normally 1-2 full blown a week, so it could be working afterall. Nearly pain free most every day, was daily head pain. Some pain above my eye today, but seeing as I was starting work at 3:30 this morning and have been on the computer for 14 hour flat many people would get eye strain and just plain exhausted. Not really any side effects that bother me, maybe loose stool, but nothing I can't live with, if it is the butterbur helping I can live with it, better than 24/7 pain in my book. I did happen to bit a gel tab before swallowing, not recommended they taste disgusting,

Good luck to others who are trying this,

Peter

milo wrote:Pen, we all count. We do not need "someone who counts"...we need someone to count us.

No matter how you paraphrase it Milo, I dont feel supported by the system at all.
I have migraine IBS and Fibro and have no help, and hardly any support for any of them

Medicine that takes away what little quality of life I have.
Doctors who just send me home to "live with it".
Thousands of pounds on therapies that dont work.

Thank God for my husband and kids.

Sorry, but I am pretty sick of this right now.
I am older than a lot of you and I dont have time to waste on waiting.

NO I dont feel I count at all.
But I guess that's just me.

lentils - Same thing happened to me on Topamax. I'm usually a 2-3 a week migraineur. I went 2 weeks without one and then BAM. I didn't think a migarine could be more than they already were. This was the worst one I had ever had. The Topamax (along with all of its "dumb" side effects") got flushed down the toilet that night. I didn't even wean myself off. Cold turkey.

Hi Peter,
I relate so well to your feelings.
I went almost 3 months painfree with Paxil, then it stopped to cheat the migraines and they came back stronger than ever.
Same thing with magnesium. For a few weeks it did wonders, then it became fresh water.

It seems that any important chemical change can make the difference in migraine, but after a while the illness understands how to bypass the change and hit again.

It's an endless battle....

So, the butterbur might be helping after all? What good news! Please keep us updated.

Gail,

I put some butterbur on my toast and was it good. Or was that apple butter?

Very cute Hal. I'll have to try that. Gail