Nimodipine (Nomitop) - has anyone tried it ?

[Dechi]

I am sorry it didn't work with nimodipine. But not surprised, because it has to be taken in very small doses, and very slowly. I couldn't even stand taking 7,5mg at first, I had to start with 3,75 mg.

I am happy to hear you have a plan B and hope it will work well for you. Maybe you can start a new thread ? Please tag me if you do so I can follow you.

Best of luck @Bansaw!

 

[TigerLilea]

@Dechi Which probiotics does the book suggest using with this protocol?

 

[Dechi]

It recommends some kind of powder, but I bought the tablets. There are five streams of bacterias you should look four, the most common and you should aim for the viggest quantity of them. I got a brand with 14 different streams, including the main 5. It is expensive so after 3 months I bought a more basic one for maintenace.

An excerpt from the book :

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This programme recommends a probiotic powder called Prime Directive (see Resources, p. 198 for stockists) –it is an organic product and based on Dr Mason Brown’s experience is most effective, but others are available in capsule form. (However, make sure you go for a good-quality probiotic capsule teeming with billions of micro-organisms.)

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I followed the recommandation of Dr. Perlmutter, in Brain maker :

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To make the task of finding and purchasing the right formulas as easy as possible, I’ve simplified my recommendation to just five core probiotic species that are widely available: Lactobacillus plantarum, Lactobacillus acidophilus, Lactobacillus brevis, Bifidobacterium lactis, and Bifidobacterium longum.

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You can find one bottle with all these 5 strains in it.

 

[Dechi]

F/U : I have been on nimotop for close to 4 months now. I started on march 9th. I am now at 75 mg per day divided in 2 doses, morning and pm. I had no significant improvement in march. April was a really bad month, I had 15 days of crash. In may, I had 5 days of crash in the third week. Since then, so over 1 month, I have not had a crash. It is the most I have been without crashing since I have been sick (18 months ago for the accute part). I can do about 3 hours of light activities per day, most days. I can take 45 minute walks once or twice a week. I can use my bike maybe once every 10 days, from 30 minutes to 60 minutes, at a slow or medium-slow pace.

To be honest, I have started monitoring my heart rate and anaerobic threshold at the end of may, right after my crash. A few days later, I also started monitoring my heart variability every morning and planning my days accordingly. I have been pacing religiously also.

I think all these factors put together are helping me. I am far from being out of the woods, but I am slowly, very slowly getting there, hopefully.

I will be continuing the nimotop for now and maybe try to lower the dose when I am able to do close to a regular day of activity.

 

[TigerLilea]

I followed the recommandation of Dr. Perlmutter, in Brain maker :

***********
To make the task of finding and purchasing the right formulas as easy as possible, I’ve simplified my recommendation to just five core probiotic species that are widely available: Lactobacillus plantarum, Lactobacillus acidophilus, Lactobacillus brevis, Bifidobacterium lactis, and Bifidobacterium longum.

***********

You can find one bottle with all these 5 strains in it.

I checked my bottle and I get all of these strains in my 8 strain probiotic. Thanks for the info.

 

[Dechi]

Great ! I've changed brands and it contains milk. I can't take it everyday, it's making me gassy like crazy... I'll go back to my old brand next time. I was trying to save money because it's expensive...

 

[taa2]

Hey, I've recently started Nimodipine and been on it for 11 days so far. Finally got a doctor to prescribe it safely I'm on a total of half a tablet now 1/4 in morning and 1/4 in afternoon, so 15mg per day. So far my skin has cleared up a bit on my face (I have dry and red skin) it's still there, but has lessened since taking nimodipine some how! Hoping I see results in the coming weeks in terms of energy. Glad you are getting some results, Dechi.

 

[Dechi]

@taa2

Yes, it seems to be working for me. Been on it 4 months now. It is not a miracle cure, I still have to find something for that dreaded lactic acid and lack of overall endurance problem. The fatigue is still there, but less. I stopped having asthma, I don't know why, but hey, I'll take it ! I haven't crashed since my last one that ended on may 22nd.

Overall I would say I am about 30%-40 % better than I was. Enough to have a semi-normal life, with pacing being an important part of it.

 

[taa2]

@taa2

Yes, it seems to be working for me. Been on it 4 months now. It is not a miracle cure, I still have to find something for that dreaded lactic acid and lack of overall endurance problem. The fatigue is still there, but less. I stopped having asthma, I don't know why, but hey, I'll take it ! I haven't crashed since my last one that ended on may 22nd.

Overall I would say I am about 30%-40 % better than I was. Enough to have a semi-normal life, with pacing being an important part of it.

That's really great, glad you are getting that improvement from it at least and I hope it continues It's so hard to find medicines for this illness that actually make some diference. I'll keep you updated on how I'm going with it. Just have to be patient, as really want to just increase my dose now! I'm following dr. Kristina's downing Orr's /Dr. Mason's approach with steadily increasing the dose each week by 1/4

 

[Dechi]

That's really great, glad you are getting that improvement from it at least and I hope it continues It's so hard to find medicines for this illness that actually make some diference. I'll keep you updated on how I'm going with it. Just have to be patient, as really want to just increase my dose now! I'm following dr. Kristina's downing Orr's /Dr. Mason's approach with steadily increasing the dose each week by 1/4

That's the best and only way to go, I think. All of those who went fast that I was aware of failed. I wish you the best. Patience is key here and you seem to have it on your side. I'll be awaiting some news when you feel like it.

 

[taa2]

That's the best and only way to go, I think. All of those who went fast that I was aware of failed. I wish you the best. Patience is key here and you seem to have it on your side. I'll be awaiting some news when you feel like it.

Hey Dechi, hope you're doing okay. I was wondering did you experience getting any cold symptoms since starting Nimodipine? I haven't had a proper cold like this in 6 years (since I've had CFS). Don't know if this is a good sign or not. I hope so!

 

[Dechi]

@taa2 Dr Mason Brown in the book says many people will actually get worse before getting better. So yes, it looks like a good sign ! I got flu-like symptoms for a few days this week, but didn't get PEM or crash despite of it. I fact, I Haven't had either in 2 1/2 months now. I am approximately 30% better now, hoping it keeps getting better !

 

[taa2]

@taa2 Dr Mason Brown in the book says many people will actually get worse before getting better. So yes, it looks like a good sign ! I got flu-like symptoms for a few days this week, but didn't get PEM or crash despite of it. I fact, I Haven't had either in 2 1/2 months now. I am approximately 30% better now, hoping it keeps getting better !

That's great to hear you're getting benefit, I hope too that you get more and more! And yes, I do recall reading in Dr. Kristina Downing Orr's book that flu symptoms are a sign it may be working, I have my fingers crossed

 

[Dechi]

Fingers crossed too, thanks @taa2 !

 

[sflorence]

@Bansaw

How did the Huperzine & Vinpocetine trial go?

I am interested in Nimotop but I am still not convinced.

 

[Bansaw]

@Bansaw
How did the Huperzine & Vinpocetine trial go?
I am interested in Nimotop but I am still not convinced.

The Huperzine & Vin' didn't produce the results for me. Nimotop seemed like it was helping me.
However, my doctor said shes getting some really good results with patients using Memorall.
https://www.xymogen.com/formulas/products/?pid=120

Theres supposed to be a more generic version coming out that replicates pretty much Memorall.
I've not tried my docs recommendations because I've got spending fatigue (spend so much $ on supps that now I am focused on healthy diet, proper rest and appropriate exercise primarily. The only supp that has really done anything for me is B12 and a-l-carnitine, and I've spent thousands finding that out.)

 

[Sancar]

@taa2 Dr Mason Brown in the book says many people will actually get worse before getting better. So yes, it looks like a good sign ! I got flu-like symptoms for a few days this week, but didn't get PEM or crash despite of it. I fact, I Haven't had either in 2 1/2 months now. I am approximately 30% better now, hoping it keeps getting better !

Hi @Dechi ~ How are you doing with your maintenance dose of Nimodipine? I just got my PC Dr to prescribe it for me today. I'm hoping for the best You are great example of a responder with your honest & detailed account of the process~ Thank you very much~

 

[Dechi]

@Sancar Congrats on convincing your doctor, it's not an esay task ! I am still at about the same functioning level, with fluctuations according to the level of stress I am exposed to. Unfortunately, Nimotop has no effect on stress, our worse enemy.

But overall I am still having the same benefits from it. I've tried to stop it and I just can't function without it. Cognitive problems become a lot worse and general malaise is drastically increased.

 

[silky]

Hi @Dechi and @Sancar

has the Nimodipine continued to help?

 

[Sancar]

@silky - I'm not a good person to ask. I was only able to get the 30mg prescription. I tried it twice. It made me feel very spaced out. No positive effect. I was told in the USA it is not available in a tablet. Which is the protocol for titering up the dose as @Dechi has. I hope she is still improving on it. It is costly. I wish I was able to get it in tablet form. My Doctor wrote the script that way but I got a large 'gel capsule'. I hope this info helps...