Nimodipine (Nomitop) - has anyone tried it ?

[Dechi]

@hvac14400

From what I have read, there are no counter side effects to taking this drug fror a long period. If you look at the document on Nimodipine I've attached above, the author has been on it for more than 7 years and she is still doing fine.

A lot of meds that you stop taking might have a chance of not working the second time, this is not uncommon.

If you felt so much better with it, maybe you should switch doctors and try again.

I wish I could read your link, you're lucky you can buy meds so cheap, but it isn't the case in Canada if you want the real thing. I won't try cheap copies.

 

[hvac14400]

@hvac14400
From what I have read, there are no counter side effects to taking this drug fror a long period.

it's not about sides - it's about building tolerance and decreasing efficiency with time - that's what i've been told by the doc. he suggested to use it in cycles.

If you look at the document on Nimodipine I've attached above, the author has been on it for more than 7 years and she is still doing fine.

ok, let's see:

I was housebound for many years due to M.E. but quickly improved and am now 80% of well. I can go out every day, go shopping,organise and participate in volunteer work, walk six miles a day, drive a car, enjoy foreign holidays, and research and prepare information. This significant improvement in my functioning is due to my use of nimodipine (Nimotop).

this is not enough for me now - i got all that improvements long time ago from other meds/supps, up to around 90% and now am searchin the way to go up 110%.
but i can confirm, that on early stages nimotop was like miracle for me - can't deny that.

 

[actup]

I am interested in this drug for for several problems- mild chiari malformation, fatigue and tachycardia. I did find a good price at "pharmacy checker". the price is 100, 30 mg tabs for $159.00. Looks like Rx needed. if your Dr prescribes it, his office can fax directly to them in Canada or he may just want you to fax it. Good luck!
http://www.pharmacychecker.com/brand/price-comparison/nimotop/30+mg/

 

[actup]

@Jonathan Edwards
We've always been the blind leading the blind and have had no choice but to rely on anecdotal reports. We truly are involuntary human guinea pigs. Through trial and error I've found many very helpful protocols suggested on these pages and other me/cfs sites which is why I am able to participate in this forum after years of just reading and observing.

With all due respect waiting for years for possible treatment options would be an unintelligent thing to do. There is a great gulf between the scientific proof timeline and our day to day suffering timeline. We can't wait for randomized double blind studies.

PEM is what we all dread the most as it cuts us off from family, friends and emotional support. It's almost impossible to plan for and leaves us in chaos with day to day functioning. We find it easier to isolate ourselves after years of trying to explain the unexplainable. My daughter's partner who is a journalist at a major paper asked me why if CFS is real there's so little information available in support of this diagnosis. My answer makes me sound like a conspiracy theorist so better left unsaid.

Having said all this I really appreciate your reasonable, patient advice. That counterfoil makes me a little less impetuous. Though I've only recently started posting here I've been a reader of this site for seven years.

 

[Dechi]

Where did Jonatham Edwards take part in this conversation ? Am I missing something ?

 

[actup]

Sorry Dechi. I am pretty new and saw hvac14400's Jonathan Edward comment tag at bottom of comment and thought it was a reply to hvac14400. My apologies to all!

 

[Dechi]

Hey, don't worry, I just thought I missed something. I wonder where hvac got this quote...

What you said made sense, though, even if there is no Jonathan, Lol !

 

[hvac14400]

Hey, don't worry, I just thought I missed something. I wonder where hvac got this quote...
What you said made sense, though, even if there is no Jonathan, Lol !

Jonathan is here, and very real, lol. the sources:

It is easy to suggest but maybe also easy to mislead unintentionally.

I think this is what is called the blind leading the blind.

I appreciate that people like to chat about these things but if it is an exchange of scientifically erroneous pseudofacts and we are talking about something potentially lethal I worry. Is everyone quite happy now that potassium supplements can kill you?

enjoy

there is a policy on this site about max signature size, so i was forced to cut sources from it recently, that's whats up.

 

[actup]

Thanks hvac and I do agree with Jonathan. I was trying to explain my own impatience with treatment progress and shouldn't have used the pronoun "we". Most folks here are amazingly level headed. I didn't choose the name actup by accident. Maybe I should just become a shroom head and die happy ;- /

 

[hvac14400]

Maybe I should just become a shroom head and die happy ;- /

shrooms are cool
as about dying - i had such thoughts very often in a yearly stages, but then, with time, i think i was somewhat able to "get over" being in that state, so it stopped bothering me eventually. like the saying goes "ppl get used to everything", so just try to wait longer, coz there is no other "good" way anyway

 

[actup]

Thanks @hvac14400 . I've only tried them once and recently but suspect they'd be good for all of us. They actually grow in my neck of the woods but don't trust my mushroom differentiation skills.

 

[Dechi]

Hum, okay, thanks, but maybe we can leave him out of this discussion since it seems irrelevant.

I didn't realize it was a quote in your signature...

 

[Dechi]

Here's an update on my treatment with nimodipine. I am currently in my fifth week. I started at 1/4 tablet in the morning, but had to reduce to 1/8 because of the side effects (making me dizzy). I was okay at 1/8. I have been increasing once a week, by increments of 1/8 tablet since then. A few times I delayed by a few days (once 3 days, once 1 day) because I was still too sensitive to the current dose. Right now I am at 3/8 tablet in the morning and 1/4 evening. I increased the morning dose yesterday, so still fresh. Yesterday I had to skip the afternoon dose, my symptoms were increasing a bit (fatigue and tingling in the legs and arms when resting). Today was okay. I am more tired these days, I guess from the medication. I can still do stuff, but I feel like in a "pre-shaking" mode, or so I call this feeling when you're not shaking but feel like you're just in the state before the shaking starts. Like water just before boiling. My blood pressure has always been low, around 90/45. It had gotten worse when I was taking Gingko biloba. It went to around 102/38. I stopped it and it was immediately better, it went back to 90/45. When I started taking nimodipine, my blood pressure got more " normal ", around 102/60. I was surprised, because one of its side effects, although rare, is to lower blood pressure. Now, with the increased dose, my blood pressure seems to want to go a little bit lower. Tonight it was as low as 94/56, once. I will keep monitoring my BP every night. This is important.

That's it for now, nothing major yet. I am hoping I will have the desired benefits when I reach 60 or 90 mg per day (right now I'm at 18,75 mg). I just hope I can get there, I usually can't tolerate medication very well. I will take all the time it takes, decreasing if I have to and increasing again later.

 

[Justin30]

Hi,

Been watching this thread for a bit. I have a question for someone that has POTS such that they get major heart rate spikes and feels dizzy...blurry vision etc.

Had anyone with POTS, Hypovolemia and or NMH benefited from Nimodipine?

 

[Dechi]

I haven't been formally diagnosed for it, but I would suspect I have a mild form of POTs, because of my inadequacy to deal with adrenalin surge, the dizziness I sometimes feel when I get up, almost to the point of fainting, and the fact that my BP drops when I get up. I am also out of breath a lot, as if I had been jogging, but I only took a few steps.

I hope you get more definitive answers.

 

[Justin30]

I haven't been formally diagnosed for it, but I would suspect I have a mild form of POTs, because of my inadequacy to deal with adrenalin surge, the dizziness I sometimes feel when I get up, almost to the point of fainting, and the fact that my BP drops when I get up. I am also out of breath a lot, as if I had been jogging, but I only took a few steps.

I hope you get more definitive answers.

Thos sounds like exactly what I get.

I dont get out of breath for me its like I forget to breath or hold my breath.

 

[Dechi]

Then maybe if it works for me it would work for you. Although I have to admit you really have to go slow. Don't try to increase too fast, and decrease if too much. That's the secret. That is how it is said also in the book where my protocole is " Beating chronic fatigue syndrome : a complete step-by-step guide to recovery ".

 

[Justin30]

Then maybe if it works for me it would work for you. Although I have to admit you really have to go slow. Don't try to increase too fast, and decrease if too much. That's the secret. That is how it is said also in the book where my protocole is " Beating chronic fatigue syndrome : a complete step-by-step guide to recovery ".

Are you feeling better from it?

I will ask my POTS Dr. after I get this holter monitor off my chest if I can try it.

 

[Dechi]

I felt my brain sharper for about 1 day. I could see more clearly when I read, it was a bizarre feeling. Then it stopped, but my dosage is still too low for the drug to have a significant effect. I am at 18.75mg and it is said to work around 30 or 60 mg generally. It's different from person to person, though. Some might need up to 120mg (maximum dose).

But, my naturopath has done a bio-impedance on me last week and she says my body composition has never been better and my cells are better nurished than before. I am absorbing proteins better, I have more muscle mass and less water retention. Also she says my organs are well-balanced and it could be from the meds (whatever this means, it's not an exact science). I drink 2L water a day as required with nimodipine, to flush the toxins from the brain, and I eat a low-carb diet, to keep away from hypoglycemia. You have to go 360.

But right now I am very tired. I need to sleep 2-3 hours, or at least lie down, every afternoon. It could be from the meds working or it could be from that gym mishap I had on april 7th. But since it was 11 days ago and my crashes last 5 days, I would say it's from the meds.

But, too early to conclude anything yet. You have to be patient with this protocol, especially if you don't tolerate drugs well, like me.

 

[Dechi]

There are two encouraging things I forgot to mention. My naturopath found that I had more strength in my arms. She had been testing it for the last three times I saw her.

Also, my sport therapist (I have a bursitis in the left shoulder) had tested my general strenght about 2 months ago and found that I was very weak. She said that it was very common for people with CFS to have this type of weakness. Last week, I asked her to test it again and she found I had improved a lot !

I have done nothing specific to increase strength so I attribute it to the meds, my change of diet and the supplements that go along with the meds.