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This is hell!

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Jut wanted to say hope he feels better soon.

Also just wanted to say I was in that same boat before. I didnt take enough shrooms to start off with. Wait 4 days and then double it. For me I take 2.5 to 3 grams dried now - this is a personal preference but if I am going to do them I am going to make darn sure they are gone and the bust is a success. I think a maintenance dose he could go lower. But if your going to trip why not just go all out to make sure you kill the beast? I see kaleidoscopes on the walls of my room when I bust. The worst part is the hangover feeling the next day but oh well better than pain.

During a cycle and you bust - this is how I know it was a success the evil slapback that comes with it...

P.S.... He is making sure to detox for 5 days before he tries to bust right? No meds at all before a bust.

Try to get the shrooms cracker dry... better way to adjust dose is if they a dried out. I have tried fresh before 20 grams fresh ground up in a coffee bean grinder and then ate with a spoon and had very minimal effect. I mean very minimal.

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  • 2 weeks later...

Hi everyone, hope you're all doing well,

Here's an update on Jan's road to the ONS surgery.

Yesterday we started with the online diary he needs to keep for about three months. The first 6 weeks he needs to fill it in once a week, two web forms.

The second 6 weeks, he needs to fill it in every day. After that the surgery will take place but.....

Ever since he took the shrooms last November/December it's getting better and better. The last log we have on our own diary is from January 14th, after that he hasn't had any major attack, just some shadows now and then.

After those two horrible months he started with Verapamil and Deseril again and we thought that was supporting the effect of the truffels because he was doing so much better!

In order to have the ONS surgery, he needed to quit the Deseril, he was very afraid the attacks would return once he got of of it but as I said before, no major attacks for almost 3 months now!!!

We're very doubtful now about what to do, should he take the surgery or not? If he keeps doing so well, is it worth it to have such surgery, on the other hand, what if he decided NOT to have the surgery and the attacks come back.....with a vengeance!

Anyway, we're enjoying the PF time he's having and keep you all updated!

PF wishes to all of you!!!


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Thats a hard choice to make - If it were me I would not want the surgery and would stick with Vit M. Thats just me though and what I would do. I feel that with these things the less you do is the more. I would try and stick to a strict protocol of maintenance doses and see what happens for 6 months to a year. But this would be for me. If I could beat them for 6 months to a year I would keep doing the same routine.

Thats a hard one to decide though.

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  • 1 month later...


Hi all, it's been a while, Jan is doing so much better the last few months, the CH's have reduced to 4 a day, still a lot but a great improvement compared to the last few months of last year!

Yesterday we went to the neurologist in the hospital where he will get his ONS surgery.

We received a lot of information, they learned a lot from former studies, for example, on the first group of sufferers who have had the surgery two years ago, they stimulated both left and right occipital nerves, regardless the side where the CH is located, in Jan's case on the right side. This to prevent that the CH would "mirror", if only the side of the CH was stimulated, there was a possibility it would start on the "healthy" side, they thought. Now they know that's not the case!

However, the first six months both side will be stimulated, after those six months, the stimulation on the "healthy" side will be stopped.

Jan's surgery is planned for June 17th, so approximately 6 weeks from now.

We have good hope it will work but we do keep in mind there's a possibility it won't!

A this moment he is only taking Verapamil 240 mg, 3 times a day and abortive medication if necessary (Imigran).

We're convinced the truffles have had a great influence on how he's doing right now, so for every sufferer here on this site...hang in there, if it doesn't work the first time, don't give up! Jan's attacks are decreased since he took truffles, from 13 attacks a day, back to 4 a day. Keep faith and know there are a lot of people here who are experienced enough to listen to their tips, they really help!

Have a great weekend and a lot of PF time all!

I've uploaded a couple of pictures to show how the electrodes look like once placed.

Keep you posted!

Elly (Pos1964)


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