Nimodipine (Nomitop) - has anyone tried it ?

[Dechi]

Hi @Dechi and @Sancar

has the Nimodipine continued to help?

@silky Yes, it still helps me, especially in the months of november to the end of june, when I'm a lot worse than summer. Since it's really expensive, I cut down on dosage according to my needs. In winter I might be 60 mg per day, my max tolerable dose, and in summer I might be 15 mg per day or even none at all.

I am not improving though. Nimotop is just helping me diminish my symptoms and keep them to a more tolerable level.

 

[Little Bluestem]

Well, even diminished symptoms is better than nothing at all.

 

[Glamco]

Hi @Dechi,
I am a new member here and a new patient of ME. Its been 1 year since ive been house/bedbound and I have finally accepted it as a diagnosis. Ive since been less stressed and finally making some steps to help myself manage or even recover one day. I was reading a book my Dr Kristina Downing-Orr and found the medical protocol with Nimodipine and Revenol in it. I saw that you said you have tried it and was wondering if you would recommend it to others like myself? I have POTS, PEM, IBS.. and of course the Brain fog. I am worried nimodipine could make the POTS worst and i already have low BP to start with because I am a small girl..

Thank you!
Jenny
26, mother of two from Melbourne AUS

 

[Dechi]

Hi @Dechi,
I am a new member here and a new patient of ME. Its been 1 year since ive been house/bedbound and I have finally accepted it as a diagnosis. Ive since been less stressed and finally making some steps to help myself manage or even recover one day. I was reading a book my Dr Kristina Downing-Orr and found the medical protocol with Nimodipine and Revenol in it. I saw that you said you have tried it and was wondering if you would recommend it to others like myself? I have POTS, PEM, IBS.. and of course the Brain fog. I am worried nimodipine could make the POTS worst and i already have low BP to start with because I am a small girl..

Thank you!
Jenny
26, mother of two from Melbourne AUS

Hello Jenny, I bought the same book you did and followed Dr Brown’s protocol. I do recommend you try it if you doctor agrees, of course. 2 people I recommended it too (not on this forum) had good gains from it.

I also have low blood pressure and OI (neurally mediated hypotension and probably POTS when severe) and nimotop has the opposite effect on me : it raises my blood pressure.

In any case, you need to go very slow and expect to take 2-3 months to reach your daily maintenance dose. I had to start at 1/8th of a pill once a day and slowly increased once a week to go up to 45mg twice a day, which was too high for me and 30 mg twice per day was perfect.

The last person that started it and had good results had to go down to 1/16 per day because 1/8 was too much.

Due to financial issues, I had to stop it at the beginning of this summer. It might be a coincidence, but my health has greatly deteriorated since and I am increasing it slowly back to 60 mg per day now.

Let me know if you have any questions. It’s a tough medicine to start, and most people get discouraged and stop. You need to be slow and steady, and persistant, and only then will you see results. Expect it to take 2-3 months, as I said.

 

[dreamydays]

I take nimodipine 30mg twice daily. Its been a helpful part of my improvements, it has had no effect on my blood pressure but has improved my POTS as more blood gets to my brain. I think its a very underused medication in this disease.

 

[Dechi]

I take nimodipine 30mg twice daily. Its been a helpful part of my improvements, it has had no effect on my blood pressure but has improved my POTS as more blood gets to my brain. I think its a very underused medication in this disease.

Yes, I agree with you. Also when people try it, they don’t have the patience to go slow, they try 15-30 mg right away and it’s just impossible to tolerate for most. And then they quit.

 

[dreamydays]

I started with a quarter of a tablet and felt different straight away, better concentration, less breathless and better circulation.

 

[Glamco]

I started with a quarter of a tablet and felt different straight away, better concentration, less breathless and better circulation.

Hey there, how long dis it take for you to build up to 30mg? Im now thinking of how I can bring it up to my dr. Does you also have advice on that? Thank you so much xx

 

[Glamco]

Hello Jenny, I bought the same book you did and followed Dr Brown’s protocol. I do recommend you try it if you doctor agrees, of course. 2 people I recommended it too (not on this forum) had good gains from it.

I also have low blood pressure and OI (neurally mediated hypotension and probably POTS when severe) and nimotop has the opposite effect on me : it raises my blood pressure.

In any case, you need to go very slow and expect to take 2-3 months to reach your daily maintenance dose. I had to start at 1/8th of a pill once a day and slowly increased once a week to go up to 45mg twice a day, which was too high for me and 30 mg twice per day was perfect.

The last person that started it and had good results had to go down to 1/16 per day because 1/8 was too much.

Due to financial issues, I had to stop it at the beginning of this summer. It might be a coincidence, but my health has greatly deteriorated since and I am increasing it slowly back to 60 mg per day now.

Let me know if you have any questions. It’s a tough medicine to start, and most people get discouraged and stop. You need to be slow and steady, and persistant, and only then will you see results. Expect it to take 2-3 months, as I said.

Thank you for your reply even though its the same question everybody asks you

Im wondering how long you were using nimo all together before you stopped? Are there addictive side effects so maybe thats why you are feelng bad off it? I did read you must wean off slow like how you start. Do you also think it doesnt offer permanent improvements hence the worsening of symptoms now?

 

[dreamydays]

Hi, I went up by quarter a tablet a week. To be honest I think I could have gone up quicker. There are no addictive side effects or withdrawal problems other than autonomic adjustments. I think you may find it hard to get a prescription as it seems a very underused medication.

Please see this article for a list of doctors who prescribe it and their notes on its use
http://www.25megroup.org/Information/Medical/Nimodipine Use in ME, Jan 2014.pdf

Also, my partner has ME and she found it lowered her blood pressure and she didn't tolerate it for that reason so I would suggest monitoring your blood pressure with a good quality machine.

 

[Glamco]

Thank you for that! Yes I do have a BP monitor. I hope in my case it improves with nimotop like the others who found benefit.

 

[Dechi]

Thank you for your reply even though its the same question everybody asks you

Im wondering how long you were using nimo all together before you stopped? Are there addictive side effects so maybe thats why you are feelng bad off it? I did read you must wean off slow like how you start. Do you also think it doesnt offer permanent improvements hence the worsening of symptoms now?

I never stopped taking it, I just lowered my dose. i don’t ever want to stop, because there is a possibility that when you do, if you want to start agsin, it won’t work.

This medication has been my life savior. I upped my dose to 30 mg again 3 days ago and I feel so much better already !

This is not addictive, there are no side effects if you’re on the right dosage. I was feeling bad when off it because I need it. Plain and simple. I was doing better with it and forgot how bad it was without.

According to the book, some people stop it after a while and retain improvement. I don’t. I need to stay on it to function. And Susan Parker, who wrote the document about nimotop linked above, has been on it for close to 10 years and as far as I know, she is still on it.

Seriously, if you have brain hypoperfusion, and everyone with a correct ME diagnosis does, this is the right med to take. Or at least try.

 

[dreamydays]

I totally agree.

 

[pattismith]

Hi, I went up by quarter a tablet a week. To be honest I think I could have gone up quicker. There are no addictive side effects or withdrawal problems other than autonomic adjustments. I think you may find it hard to get a prescription as it seems a very underused medication.

Please see this article for a list of doctors who prescribe it and their notes on its use
http://www.25megroup.org/Information/Medical/Nimodipine Use in ME, Jan 2014.pdf

Also, my partner has ME and she found it lowered her blood pressure and she didn't tolerate it for that reason so I would suggest monitoring your blood pressure with a good quality machine.

I have low blood pressure, so not sure it will help me, but it's worth a try, thank you

 

[Dechi]

I have low blood pressure, so not sure it will help me, but it's worth a try, thank you

@pattismith Like I said, I have low blood pressure too. My normal BP is 90/45 and it has been as low as 102/38. Nimotop has the opposite effect on me. By increasing blood flow to the brain, it raises my BP to about 100/60, which is perfect !

I have been taking it for 1 1/2 year non stop. Without it I become much more ill and incapable of functioning to a tolerable level.

Try it with caution and monitor your BP. Not enough credit is given to this medication.

 

[dreamydays]

Again I agree completely. I have a braun blood pressure machine, its very accurate. nimodipine can raise your blood pressure or drop it depending on your unique autonomic systems. Unlike other calcium channel blockers the majority of its action is around blood flow to the brain. After a few months on nimodipine I added 1.25mg of ivabradine twice daily which regulated my heart rate and autonomic system further. My POTS is quite a bit better. My blood pressure is now about 123/80 on average.

 

[Dechi]

Again I agree completely. I have a braun blood pressure machine, its very accurate. nimodipine can raise your blood pressure or drop it depending on your unique autonomic systems. Unlike other calcium channel blockers the majority of its action is around blood flow to the brain. After a few months on nimodipine I added 1.25mg of ivabradine twice daily which regulated my heart rate and autonomic system further. My POTS is quite a bit better. My blood pressure is now about 123/80 on average.

@dreamydays I suppose your heart rate was too high ? Mine is too low, in the 40-46 range at rest, and also too high when my symptoms get severe. I wonder if ivrabadine would help me ?

 

[dreamydays]

Dechi, my heart rate was fine when I was lying down but went crazy as soon as I got up. Ivabradine has been incredible for me and my partner, I think its another underused medication in this disease. A good cardiologist who understands POTS will be able to prescribe it or maybe even a GP. Again start low, I started on a quarter of a 5mg tablet twice daily and it was my ideal dose and I have stayed on it.

 

[Dechi]

Dechi, my heart rate was fine when I was lying down but went crazy as soon as I got up. Ivabradine has been incredible for me and my partner, I think its another underused medication in this disease. A good cardiologist who understands POTS will be able to prescribe it or maybe even a GP. Again start low, I started on a quarter of a 5mg tablet twice daily and it was my ideal dose and I have stayed on it.

Thanks. I see you’re also on LDN. What aspects does it help you with ?

 

[dreamydays]

I take 3.5mg of low dose naltrexone every night, it has improved my joint pain and sleep and has led to a gradual improvement in all symptoms. I think it takes up to 18 months to get the full benefit and I started on 0.5mg a night and went up by 0.5mg a fortnight. I think its one of the best ways to improve NK cell function and generally modulate the immune system.