Nimodipine (Nomitop) - has anyone tried it ?

[Dechi]

@dreamydays With all your meds helping you, how much have you improved ? Are you capable of working ?

 

[dreamydays]

No, I was bedbound before these medications. I am gradually getting stronger and have not given up on getting into remission. If I do recover, I would not take the risk of working again as I believe that the disease will always be in waiting for an opportunity to re-emerge. With nimodipine, ivabradine and cimetidine I had immediate symptomatic improvement within 30 minutes of the first tablet, so I believe you can tell quickly if they agree with you or not. These are not the kind of medications that will cure you from ME on their own although there have been one or two stories of remission from nimodipine, I would say that they are very exceptional cases. We can only strive for incremental improvements and keep building on them step by step and never give up. Good luck.

 

[Dechi]

@dreamydays I have the same opinion about remission and recovery. Thanks again.

 

[paolo]

According to this press article, researchers from Griffith University are considering nifedipine (which is a drug close to nimodipine) as a possible treatment for the calcium channel disfunction they found about an year ago (Nguyen T et al. 2016).

 

[paolo]

No, I was bedbound before these medications. I am gradually getting stronger and have not given up on getting into remission.

Are you still improving?

 

[pattismith]

I started Nifedipine today (small dose), but my blood pressure is droping.

usually at rest when lying flat, it's 85/45, but tonight it's 76/40;

Anyway I feel not bad, so I think it's not a problem...

 

[Dechi]

I started Nifedipine today (small dose), but my blood pressure is droping.

usually at rest when lying flat, it's 85/45, but tonight it's 76/40;

Anyway I feel not bad, so I think it's not a problem...

I think you should be careful and talk to your doctor about that. I sometimes have very low blood pressure (naturally) but Nimotop increases my BP, which is good.

 

[pattismith]

I think you should be careful and talk to your doctor about that. I sometimes have very low blood pressure (naturally) but Nimotop increases my BP, which is good.

thank you for your concern Dechi,
I do not worry too much, the effect on my blood pressure is not long, so I just have to find the right dosage.

 

[dreamydays]

I started Nifedipine today (small dose), but my blood pressure is droping.

usually at rest when lying flat, it's 85/45, but tonight it's 76/40;

Anyway I feel not bad, so I think it's not a problem...

Hi nifedipine is a systemic calcium channel blocker, the main drug discussed here is nimodipine which mainly affects blood flow to the brain rather than all over. I took nifedipine before and it made me feel light headed and light all over. I know its being discussed in another thread with regards calcium intake into cells.

 

[dreamydays]

Are you still improving?

Hi Paolo, unfortunately I had a massive crash due to personal reasons. I am normally a machine when it comes to pacing myself. I had forgotten just how hard a big crash can be to get over. I am still dragging myself back up now. Thanks

 

[pattismith]

Hi nifedipine is a systemic calcium channel blocker, the main drug discussed here is nimodipine which mainly affects blood flow to the brain rather than all over. I took nifedipine before and it made me feel light headed and light all over. I know its being discussed in another thread with regards calcium intake into cells.

unfortunately Nimodipine isn't available in my country...

 

[dreamydays]

Are you able to use online pharmacies from abroad? I get mine from United Pharmacies. In my experience they have very different effects. There are still some possibilities of nifedipine so maybe you have been lucky.

 

[pattismith]

Are you able to use online pharmacies from abroad? I get mine from United Pharmacies. In my experience they have very different effects. There are still some possibilities of nifedipine so maybe you have been lucky.

no , I can't use online pharmacies either.
But you are right, nimodipine is a special channel blocker, as it crosses the blood brain barrier better than any other; I will see if I can find another way...

 

[dreamydays]

Have you looked at the list of doctors in the document I linked to earlier in the thread? Obviously very hard to travel when you are this sick. Good luck

 

[pattismith]

@dreamydays , I wonder if you know that "Concomitant administration of cimetidine produced an approximate doubling of the bioavailability of nimodipine. This again was to be expected, considering the known inhibitory effect of cimetidine on cytochrome P450."

Do you take a big dose?

 

[dreamydays]

Yes the cimetidine affects a lot of my other medications. I just take smaller doses unless I get on better with more.

 

[stefanosstef]

I started it today.I don't want to jinx it but it made a difference.One change that was really surprising but now makes sense is this.I've always had sensitivity to nicotine.If I smoke more than a few puffs I can get quite dizzy, pale, like my pressure is dropping, puking also if extreme.I am not a smoker but lately I will smoke 2-3 cigarettes per week.Anyway today I smoked a whole cigarette without needing to putting it out and light it again, as I usually do, which means around 3x of my usual threshold before I get dizzy, and I felt no dizzyness at all.It is from nimodipine for sure.

I have a general feeling that not enough blood gets in my brain, I also have Raynaud's and mild POTS that comes and goes.Generally I feel weak standing up.I started at 7.5mg once per day, no sides.

 

[Dechi]

I started it today.I don't want to jinx it but it made a difference.One change that was really surprising but now makes sense is this.I've always had sensitivity to nicotine.If I smoke more than a few puffs I can get quite dizzy, pale, like my pressure is dropping, puking also if extreme.I am not a smoker but lately I will smoke 2-3 cigarettes per week.Anyway today I smoked a whole cigarette without needing to putting it out and light it again, as I usually do, which means around 3x of my usual threshold before I get dizzy, and I felt no dizzyness at all.It is from nimodipine for sure.

I have a general feeling that not enough blood gets in my brain, I also have Raynaud's and mild POTS that comes and goes.Generally I feel weak standing up.I started at 7.5mg once per day, no sides.

That’s great ! Keep us posted !

 

[Wonkmonk]

I experienced almost exactly what Mason Brown described: Initial worsening with flu-like symptoms at a very low dose, followed by some symptom relief after a few days/weeks.

The symptom relief was very modest, though. Mainly a bit less pain and perhaps 10% more energy, but that was all.

Interestingly, it only helped at a very low dose (15mg a day). At higher doses, it makes me worse instead of better.

Nimodipine is definitely worth trying, especially because it very safe and low cost.

But one shouldn't expect miracles.

 

[stefanosstef]

I am better but don't know why.I was in a crash period for many months with very rare breaks no more than 1 day each.What happened:

1.I am strong mentally and it's hard for me to get depressed (i assume my serotonin is fine, contrary to my dopamine), but I've had enough lately from my CFS, the doctors' inadequacy and my family's confusion.Friday-Saturday-Sunday I had a mini mental breakdown, it was a year's record level of upset.I am never like that.Friday is the day I started citalopram 20mg to prove that I am not an elephant.It quickly made me hyper.
2.Monday I am more than good.Almost symptom free and emotionally happy.Haven't started nimodipine yet but it's been a week since I restarted LDN.Also that day the change of season is noticeable here, summer is gone (I get better when seasons change for some strange reason, at least this year).
3.Tuesday I start nimodipine and I stop citalopram because I see some epigenetic risks regarding testosterone and I'm not willing to risk.If I decide to try an SSRI it will be another one.
4.So, Thursday, 2 days after I quit citalopram I am still quite good but not semi-euphoric like the previous days.Current dosage of nimodipine 15mg morning, 7.5mg afternoon.
5.Today, Friday, same as Thursday.Upped my dosage, I am at 15mg morning and 15mg afternoon and I'll stay at that for a while.Today is the first day of my HRV journal.I've bought a Polar H10.

Honestly I am not sure what is the reason of my change.Probably the change of season and/or LDN.I have a feeling that nimodipine helps but I am not sure.