Nimodipine (Nomitop) - has anyone tried it ?

[Bansaw]

So for now it is the best option for me and I will give it all I've got. Don't forget, Nimodipine is the main ingredient for this program, but it's not the only one. Maybe this whole package makes a difference versus only taking Nimodipine.
We'll see.

Hope it works for you Dechi. I still have not dismissed this treatment. In fact I just bought Dr. Orr's book on Ebay and its coming soon. This may be a treatment I look at since I think I've had so much toxin dumped into my because I had Endemic Typhus (akin to Lymes) and that can cause vasculitis (constriction of blood vessels) and I took a lot of antibiotics which might have rid me of the Typhus but created other issues.

 

[Dechi]

Great, Maybe I'll have a buddy to do it with ! ;-)

 

[Glenn C]

Just joined this forum. I'll try to get around to posting an introduction.

I tried this treatment for several months following the protocol as best I could. I decided to try it as the potential side effects are low. At first I thought I was getting some minor benefits but eventually I stopped to verify and did not notice any difference so I discontinued the treatment.

For other trying this, I hope you have better luck. BTW I am also in Canada and Nimodipine is very expensive here ($10 per 30mg tablet). I started with a local pharmacy but was able to purchase from an online pharmacies for $1.50 per 30mg tablet. However, this cannot be delivered in Canada. I had to have it shipped to a hotel (or friend) in the US and picked it up while I was visiting.

 

[Dechi]

Thanks for sharing your experience. Personnally I would be very hesitant to try a pill that it sold at 1/10 th of the cost of the original. I know someone who's brother-in-law works in pharmaceuticals and these pills are made in cheap labs where quality is not monitored. They are cheap copies and dangerous to use. I am not saying that's what it was for you, but I would never attempt it myself. Too risky. And the fact that you did not buy the original version might have to do with your limited success.

I don't want to jinx myself, but I am seeing improvements. I am in my second week, so I will reserve my judgment for later.

Thanks again and I hope you find something to help you soon.

 

[Glenn C]

Dechi,

Starting with 1/4 tablet as per day as per the protocol, over a period of a few months I eventually got up to 2 tablets per day. At that dosage that's over $7,000/year at local prices vs. ~$1,000. I did as much research as I could before I ordered online from a Vancouver based online pharmacy.

To be clear, I started by filling my prescription with my local pharmacist. The ones I purchased online later were from Bayer as well but labeled as being manufactured in the UK rather than Canada and were otherwise identical. The price I paid was to my understanding in line with what Nimodipine cost internationally. Its not really that they cost 1/10th the price, more that we pay 10x the international price in Canada. Nevertheless, I was very careful when I tried the "new" tablets and went back and forth between them. The side effects I experienced (headaches, tinnitus, problems sleeping) were indistinguishable between the 2 sources.

If it continues to work well for you (I hope!) and decide to source it online, contact me and I'll give you all the details.

 

[Dechi]

Thank you. But since I have insurance, I'll stick with the ones from the pharmacy. It would be about 100$ per month if I go up to 2 per day. Right now I am at 1/8 th twice a day.

 

[Gingergrrl]

@Dechi Is this the thread that you were asking me about via PM? I did not read it before and want to make sure that my response to you made sense. I have never tried the medication in this thread (Nimodipine) but had a negative reaction to one pill of another CCB, Diltiazem, about two years ago. Because of the rare auto-antibody that I have, I have now been instructed not to take any CCB's including supplements like Magnesium but I doubt this really applies to anyone else on the board who does not have this auto-antibody. I hope this helps and if not, feel free to ask me further questions.

 

[Dechi]

@Gingergrrl

Thanks a lot for the info. This isn't the link. Here it is :

http://forums.phoenixrising.me/inde...-it-or-know-about-it.12069/page-2#post-714645

 

[Dechi]

@Gingergrrl

I forgot to ask, how long did it take for your adverse reaction to happen ? How long after starting the meds and at what dose (starting dose, later on ?)

Thanks again !

 

[Gingergrrl]

@Gingergrrl

I forgot to ask, how long did it take for your adverse reaction to happen ? How long after starting the meds and at what dose (starting dose, later on ?)

Thanks again !

The reaction (to Diltiazem) was immediate and with the very first pill. It was an extended release pill and I want to say it was 360 mg but this was two years ago and my memory of the dosage may be off.

I had not vomited since I was a teenager but I actually vomited as if my body wanted this pill out of my body. It gave me severe dizziness and dropped my BP dangerously low and I almost fainted (and have never fainted in my life.)

I suspect the reaction was extra severe b/c of the antibodies which I did not know that I had at that time. But I have never tried Nimodipine and if you do not have my antibodies or low BP, you might be fine with it so don't assume what happened to me applies to you!

I hope this helps.

 

[Dechi]

@Gingergrrl

Yes, it helps tremendously, thank you ! Since Imhave been taking Nimodipine for about 25 days, I doubt very much that my reaction is similar to yours.

Also I am pretty certain now that my reaction was due to exercise induced hypoglycemia from the gym 2 days ago (I pushed myself more as a test) rather than the meds. I took my regular doses today (am and pm) and I haven't had any problems.

Hopefully I can keep increasing without problems and I get the desired effects from it.

 

[Gingergrrl]

Yes, it helps tremendously, thank you ! Since Imhave been taking Nimodipine for about 25 days, I doubt very much that my reaction is similar to yours.

Yes and your experience sounds totally different than mine. Best wishes to you.

 

[Bansaw]

@Dechi I got the book. Looking at the Protocol. This is my understanding of the protocol. Is this about what you follow too?


Week 1
One quarter tablet of Nimodipine (AM) per day and eight glasses of water to flush out toxins
400mg Ginko Biloba
L-Glutamine 500mg, three times per day
Evening Primrose Oil, 500mg four times a day
Probiotic Powder

Week 2
One quarter tablet of Nimodipine (AM) and another quarter in the afternoon before 4pm. Continue with eight glasses of water
400mg Ginko Biloba
L-Glutamine 500mg, three times per day
Evening Primrose Oil, 500mg four times a day
Probiotic Powder

Week 3
Half a tablet of Nimodipine AM and a quarter in the PM. Eight glasses of water
400mg Ginko Biloba
L-Glutamine 500mg, three times per day
Evening Primrose Oil, 500mg four times a day
Probiotic Powder

Week 4
Half a Nimodipine in the AM, and half in the PM. Eight waters.
400mg Ginko Biloba
L-Glutamine 500mg, three times per day
Evening Primrose Oil, 500mg four times a day
Probiotic Powder

Week 5
3/4 of a tablet of Nimodipine AM and half in the PM. Continue water quota.
400mg Gink Biloba
L-Glutamine 500mg, twice per day
Evening Primrose Oil, 500mg four times a day
Probiotic Powder

 

[Dechi]

@Bansaw

Hurray, I am glad you got the book and that I have someone to talk to about this !

Yes, I am following the protocol to the letter. On top of that, I also adjusted my diet. That is very important. You need to eat the best foods and avoid all the crap like all-prepared meals, junk food, bad fat and refined sugars. The book also covers this part.

Here is what I had to adjust, you'll see how it works for you :

1. 1/4 tablet to start was too much for me. So after 1-2 days of my first dose at 1/4, I had to cut it in half and start at 1/8. Of course you need a pill cutter.

2. Then I increased by 1/8 in pm the next week.

3. Twice, on day 7, when I was about to increase the dosage by 1/8, I had some side effects the day before, so I pushed the increase. Once by 3 days, the second time by 1 day. The side effects I have are a little dizziness when I get up too fast. It has nothing to do with bloop pressure. I monitor my blood pressure every night and sometimes in the morning. Since Nimodipine might cause low bloop pressure, in rare cases, you might want to spend a little money on a BP monitor, just to reassure you. Since I have been on Nimodipine, strangely, I no longer have low blood pressure. It's still a little low, but pretty close to normal. Go figure ! I had the dizziness effect maybe twice in about 1 month, so not enough to worry about.

4. The Gingko biloba caused some easy bruising for me, and Dr Mason says to stop it if it does, so I had to stop it. Just watch yourself for that.

5. I take probiotic tablets, the best ones I could find, instead of powder. Much more convenient.

When you're on step 4, I think, to clean the liver, you will need the Revenol. The company that makes it was bought and the product has changed name, so when you get there, I'll give you the link to buy it. There's only one place in the whole world that I found... It's not too expensive so I already bought two bottles.

Right now I am on 2 doses of 1/4 per day, for a total of 1/2 pill (15 mg). I just increased my pm dose by 1/8 today. For my next increase, in the morning, I am debating whether I try an increase of 1/4 straight, or if I stay at 1/8.

Here is a very well written and detailled document about Nimodipine for the treatment of CFS that you might want to read. I found it inspiring.

http://www.25megroup.org/Information/Medical/Nimodipine Use in ME, Jan 2014.pdf

Overall I would say I am doing better, a lot better than a few months ago. I have to pace myself because I had hypoglycemia 2 days ago because I was overconfident at the gym. No more for now.

Ah, also, the book doesn't talk about that, but I take 300mg magnesium glycinate (take the prescribed dosage on the bottle you buy) to help me sleep. It allows me to habe a good 8 hours sleep maybe 3, 4 times per week, instead of 4-5 hours like before. I am still tired, but I am not at the required dosage yet of Nimodipine.

I hope it goes well for you. Come back and share and ask questions when you need to ! I'll do the same.

 

[Bansaw]

I hope it goes well for you. Come back and share and ask questions when you need to ! I'll do the same.

Thanks Dechi -- Can I ask what your experience of bruising took, ...where etc?
I have naturally low blood pressure and thats what I'm a little concerned about. I might have to check it daily.
What probiotics do you take?
I have been on a good diet for a couple of years now, low carb, low sugar, no junk food.
Since cutting out sugar a couple of years ago, I have felt the benefit.
My issue at the moment is very bad muscle aches after even minor exertion. My aerobic has actually improved to allow me to do 10 mins on the elliptial trainer. Tahts the good news. But if I lift a weight or two on a new muscle group, - I have ached for a week. I am hoping primrose oil might help there.

 

[Dechi]

@Bansaw

I had bruising on the upper part of my thigh, and I couldn't remember hitting myself on anything. Just one bruise. But sinçe I bruise easily, I was afraid to continue. You most probably won't be having this problem.

Before taking Nimodipine, My BP was sometimes 102/38, sometimes 90/45. So I was a bit nervous about this side effect. But apparently it's very rare. Right now, my BP is 100/60, which is an improvement. It's lower in the morning, but that is totally normal and to be expected. Get yourself a monitor, it's worth it.

My probiotics are Health First, Pro Bio Supreme. The have 14 strains, including the 5 Dr Mason talks about (or is it in Brain maker I read this. Anyways, they have the 5 most important strains). My naturopath told me to take 4' which I did for about 4-6 weeks, then she said I could go down to 1 (Dr Mason doesn't say how much to take).

http://www.foodsmiths.com/products/health-first-probio-supreme-60

Your diet sounds great, so that's already settled. And very good also that you can do aerobics. I started doing 3-4 minutes but I stopped, I will have to start again soon. For me it's the opposite. I was a weight lifter before, so that's what I still do. Only very limited.

If Nimodipine works for you, it will take care of the pain.

 

[taa2]

I am currently following Dr Mason Brown's protocol, as described in " Beating chronic fatigue syndrome - a complete step-by-step " guide to recovery ", written by Kristina Downing-Orr and I was wondering if anybody has tried it ? Both Dr Brown and Dr Downing-Orr had a severe form of ME and were treated successfully with this protocol. Dr Brown has treated more than 100 patients with it and says 80% of his patients recover fully or close to it. The central element of the protocol is Nomitop, but there are also supplements to take. There are 4 easy steps and the protocol is especially made to be done at home. You can choose between the medical approach (with Nomitop, supplements and probiotics) or the all-supplement approach. I chose the medical approach.

I started three days ago, this morning was my third dose of Nomitop. I would be interested in hearing (positive if possible) feedback on the subject.

If anyone is interested, I have a complete report of the use of Nomitop to treat CFS/ME across the world, including side effects and success rates and the names of doctors who use it and their methods.

Hey I was wondering who you go to prescribe the nimodipine? I have a funny feeling this would work for me, but live in the UK and can't find anyone who would prescribe it. I was saddened to find out Dr Downing Orr has actually died

 

[Dechi]

@taa2

I didn't know Dr Orr died, how awful ! She was only 53, do you know what she died from ?

Have you checked the document I provided ? There is a list of doctors across the world who can prescribe it. On the other hand, my doctor had never heard of this med and I convinced him. I brought the studies and so forth and he was willing to let me try. I told him I would buy a BP monitor and check myself for low blood pressure every day. He was okay with it.

Here are the doctors in UK from the document. Even if not on there, you can convince them. Use this document, it's great.

 

[taa2]

@taa2

I didn't know Dr Orr died, how awful ! She was only 53, do you know what she died from ?

Have you checked the document I provided ? There is a list of doctors across the world who can prescribe it. On the other hand, my doctor had never heard of this med and I convinced him. I brought the studies and so forth and he was willing to let me try. I told him I would buy a BP monitor and check myself for low blood pressure every day. He was okay with it.

Here are the doctors in UK from the document. Even if not on there, you can convince them. Use this document, it's great.

Thank you so much Unfortunately I don't know how she died, but just received an email from someone saying so

 

[hvac14400]

200-300$ for 28 pills? that's fokken crazy
http://www.eapteka.ru/goods/drugs/neurology/brain/nimotop_bayer/?oid=232427
original bayer, 100 pills for 16$ - that's it, without prescription of coz.

i've used this drug back in 2007, without any "protocol" with very great results, but the doc told me, that i can develop tolerance to it very quickly if i would take it nonstop, and then no other drug on earth will help me. so i freaked out and stopped it, leaving half the (second) package unused.