Re: My boat has landed

Thats great news Julie! Very pleased for you! I’m glad you have found your ‘cure’.

Have you heard of anyone with MAV having such success?

Would you say you feel 98% now?

Julie,

That is so good to hear. BTW, how’s the book coming along?

Brian

— Begin quote from “dizzyrascal1983”

Thats great news Julie! Very pleased for you! I’m glad you have found your ‘cure’.

Have you heard of anyone with MAV having such success?

Would you say you feel 98% now?

— End quote

I do have MAV rascal.

I feel 100%, but i still have to get off all my preventatives. As I said, I’m off neurontin, I’m halfway down my Topamax, should be off completely in a couple of weeks, i’m taking it slow. And then Klonopin i’ll take real real slow so as to experience as little withdrawal as possible. I went through a V withdrawal 35 years ago and I went pretty fast.

Julie

Awesome Jul!!! I have no words!! :mrgreen:
I remember months ago, when you told us about your dream on the boat, and how all that was playing out - I knew you’d be docking, but I never figured for a second it would be so fast!!!
Exciting stuff - I can’t wait to get started!!!

Kim

Julie

I’m so, so, sooooo pleased to hear this!!! What a miracle, after all this time and struggle. We should never give up hope should we, as you just don’t know what’s around the next corner.

:mrgreen:

Becky

Hey Julie,

I am so excited for you! If things continue as they are… you will have a full life again. You must start planning your celebration??? :-)… Please continue to keep us posted.

Joe

a celebration? How about that dinner you promised me? :mrgreen:

WOW, great for you! And I was going to trial elavil soon.
If so i’ll trial that first!

Julie,

How much Klonipin are/were you taking? Just curious because I am taking it for both the MAV and bruxing, more for the bruxing. It has been a great relief for the bruxing I would hate to give it up. Without it, all foods and drinks would have to be at 98.8F so as not to thermo shock my teeth, not to mention that I can’t have any type of dental work done without extreme pain from just the water and suction they use.

Brian

wow, you really have chewed your teeth down, Brian. And no splints have helped you?

I take 1.5 mg a day. Klonopin was a life saver. And it will help me get off my other meds. BTW, i forgot about the Pristiq. That will be tough. I’ll be glad to have it during that withdrawal, which I will take very slowly. Luckily, I haven’t been on it that long.

How much Klonopin are you taking?

— Begin quote from “Julie”

wow, you really have chewed your teeth down, Brian. And no splints have helped you?

I take 1.5 mg a day. Klonopin was a life saver. And it will help me get off my other meds. BTW, i forgot about the Pristiq. That will be tough. I’ll be glad to have it during that withdrawal, which I will take very slowly. Luckily, I haven’t been on it that long.

How much Klonopin are you taking?

— End quote

I am impressed, I didn’t mention the toothguard but you remembered from my old posts that I wear one. I take 1mg at bedtime. I recently ran out, thanks to the doctor taking forever to refill it, then he called in the wrong script and I had to wait even longer. In short I went about two weeks without it, and I didn’t notice any type of withdrawal except for getting to sleep, and my teeth starting to hurt within a couple of days. Both of those were expected, so I wouldn’t consider that I went through withdrawal at that dosage level. I would suspect that you probably won’t have a problem when you get to the point that you are ready to quit that med as well.

Brian

Next time, let me know, i’ll mail you some, (only kidding guys!) i have enough benzo here to knock out a small horse :wink:

Yea, i know pretty much how my body goes through benzo withdrawal, i did it once. Wasn’t a day in the park, but it wasn’t anything as hellish as this MAV. and i didn’t go slow. After 7 years of 10 mg of daily Valium, i was off in one month. I’ll go much more slowly this time.

JJ

Hi Julie,

Really great news to hear that you feel “still” for the first time in a very long time. I am still a little concerned that you could become totally unstuck, however, by ditching Topamax and the benzo. Are you really certain that this effect isn’t something that Topamax is responsible for? How long have you been on an efficacious dose of Topamax? I understand it can take months to realise the full benefits from it once you hit the right dose.

Scott 8)

Julie, That’s great to hear, glad something is making you feel better.

Scott,

I went down to 50 mg Topa a few months ago with no ill effect. Hain suggested I go down further, just to test to see what dose i actually needed to be at. He intuited that I was too high. I decided to wait so as not to muddy the waters. Total time on Topa has got to be close to a year (?). I got my best results from Topa at the beginning of the treatment. At the later increases in dosage the improvements were very minimal.

Hain says that Topa hits it’s peak improvement at 3 months and i did have that reaction - it was incredible. But we both agreed that I have gotten as much out of Topa as I’m going to get, God bless it. He believes I have too many meds in my body and, since I’m feeling so much better, wants me to try to get off something and his first choice was Topa. (well, no neurontin was his first choice, but that is long gone)

Thanks for your concern, Scott, but I’m not going to “ditch” my meds at an irresponsible pace, Hain has given me guidance and I’m a cautious person, as well as being extraordinarily intuned to my bodily sensations.

I am STILL for the first time in 7 years!

I know I have a lot to test, coming down on meds, eating no-no foods, driving around more. But I’ve already been doing things I couldn’t do a month ago with no ill effect. A full ballet work-out with my head in all kinds of positions, hanging upside down, moving side to side, doing pirouettes! yes, turning! spinning - no ill effect!

So I wouldn’t be totally surprised if some of my meds are supporting me, the question is, to what extent? How much Topa do I need to be on? The only way to know, is to wean slowly down and see.

My meds, God bless them, got me out of the house taking walks, but that was it. I was at a standstill. As I’ve said before, Hain called me intractable. the only thing he had left for me was SERC.

I guess I have more confidence because I’m the one experiencing it, as well as seeing my dog being cured of her heart murmur, as well as seeing my husband’s labs come back with fabulous results, as well as my niece being cured of her MAV and seeing so many other people I know being cured of a variety of things. And I mean cure in the true sense of the word. I’ve had a lot of personal experience with this product, so i don’t doubt it.

I’ll keep you posted on what happens.

P.S. Bathing in it, hmmm :slight_smile:

Julie

P.S. the benzo - are you kidding? That will be the very last thing to go ! I will have run every test under the sun before I let go of my benzo :stuck_out_tongue:

Sorry if any of previous posts sounded overly enthusiastic about dumping my preventatives. That is not my intent at all.

Julie,

I’m glad to hear Hain knows what’s happening and is in this with you to help with guidance. The whole thing is bizarre – that some powder made up of a protein stuck to a sugar molecule can have this effect. Did Hain have anything to say about it? I guess like most MDs he probably shrugged his shoulders.

I’m finding 5HTP is really working out well so far in keeping my mood stable while I dump SJW. After that it’s Program time round 2 … and if that fails, I’m going to try Topamax again.

Scott 8)

Scott,

GREAT regarding 5HTP!!!

I’m only at the 6 week point, and i’m not supposed to see these kinds of results until 3 or 4 months. So my hope is that if my meds are helping to support me now, which i wouldn’t feel devastated about one bit, by the end of 3 or 4 months, it’s likely I’ll have a true and complete cure. My niece does, she is off all meds.

Not having tried it, I have faith in the Migraine Program. they give you a 90% cure rate, right? I just know I couldn’t tolerate all the things they want you to take - they would make me sick. I know you commented once on me having the constitution of an ox :slight_smile: but i don’t. I couldn’t take all those supplements. And I would even worry about the effect of the hormones. I am truly sensitive.

I will keep you all posted on my Topa wean. I’ve already started, if i have no ill effects i should be done by mid next week.

Julie

This is probably a stupid question but: why hasn’t some big drug company come along & scooped up this stuff & put a patent on it & charged gazillions for it? (Okay, so I said it was a stupid question!)

My instincts trust/believe Julie’s personal experiences but my cynical self is waiting for her to grow fins and/or unwanted body hair or sprout vines all over her body like some Outer Limits bloopers reel.

If Alfa PXP was covered by insurance, it would be a lot easier for me to get some! I could just beg the doc to write a 'script for it.

Julie, have you read or experienced anything at all that’s negative so far? Has anybody done any long-term studies on this stuff that you know of?

— Begin quote from “joy”

Why hasn’t some big drug company come along & scooped up this stuff & put a patent on it & charged gazillions for it?

My instincts trust/believe Julie’s personal experiences but my cynical self is waiting for her to grow fins and/or unwanted body hair or sprout vines all over her body like some Outer Limits bloopers reel.

If Alfa PXP was covered by insurance, it would be a lot easier for me to get some! I could just beg the doc to write a 'script for it.

Julie, have you read or experienced anything at all that’s negative so far? Has anybody done any long-term studies on this stuff that you know of?

— End quote

Great questions, Joy!

I guess the fact that the only ingredients are three strains of rice flour plus spirulina - it’s what they’ve done to it that makes it work - is why i was never afraid of it. You’ve read my literature, yes?

the reason the pharmaceuticals haven’t gotten their hands on this is the same reason we can’t get our hands on their research. The company has not patent on it - if they patent it the pharmaceuticals can see what they are doing and will make their own version of it “put their pharmaceutical stuff in it and turn our pure product into something corrupted with side effects” quote from the company doctor I talked to. He ended that with - besides, we don’t need to patent it, we sell it by word of mouth. People see what it can do and it sells by word of mouth.

It’s been consumed for ten years. I have a page of research studies being done at universities in the U.S. regarding the effects it has on treating various illness, but nothing regarding side effects or long-term use.

I don’t mind being a guinea pig. I’m 55, my biggest fear was living out my years with MAV = having no life at all, and feeling pretty miserable every day of that life. As well, the fear of what those preventatives were doing to my body - they would have eventually taken me down. Often I would think, the sooner the better.

But it doesn’t make sense to me that something which is so widely healing would also be harmful. In ten years, the company doctor told me, and they have been doing studies, PXP has not caused one problem aside from the expected detoxes.

And me, personally, no I’ve experienced nothing negative. neither has my husband, cat or dog :slight_smile:

thanks for your thoughtful questions, Joy. Yes, it’s too bad the price is so high. But they put a lot of money into making this stuff. And they are putting a lot of money coming up with a new generation PXP which will be coming out soon.

Actually, with all the co-pays for my meds + paying Hain cash, for me, once i get off my meds, it’ll be an even trade.

Keep the questions coming Joy, they help to clarify things.

Julie