Nifedipine experiences/comments please

Symptoms and Treatments
1

Hi all, hoping for comments/experiences on Nifedipine please.

I have diagnosed EM (by neuro & confirmed by dermatologist) 2.5yrs. Unclear if it primary or secondary, as remember father complaining of similar & never wearing socks or slippers even in winter. Also possible small fibre neuropathy - the EM symptoms started around the same time but neuro says cant confirm the SFN.

Flares are every day, come with or without triggers, but start later in the day (sometime btwn 4-11pm) & last at least till following morning, often till noon. Then resolve completely.

I dont have raynauds although have had very poor circulation due to severe ME/chronic fatigue syndrome (mainly house/bedbound for last 25yrs) and prior to the EM developing feet would get painfully cold & whole feet & ankles go pale, but not white like in Rays.

I tried Aspirin, capsaicin, pregabalin, amitriptyline, menthol, gabapentin.

Gabapentin helps a bit, plus 5% menthol cream, plus elevation & fan on them all night.

But its so uncomfortable trying to sleep with feet off the bed with a fan on them midwinter that it’s still seriously affecting my sleep!

So she’s prescribed nifedipine. She was reluctant to try mexilitine (NHS docs are so conservative) - says its off label & worried about side effects. Personally i think it’s more about cost - mexilitine costs a LOT! because nifedipine S/E seem scarier to me - i dont want my blood pressure to drop too far.

Anyway, after reading so many people sharing nightmare experiences of Nifedipine making their EM worse, that I initially thought that prescribing a vasodilator was madness given the whole issue with EM is inappropriate vasodilation, but i guess it depends what is causing the dilation in each individual case. She said it’s the last resort.

We’ve ruled out any myeloproliferative (blood) disorders& obvious autoimmune things, but since the cause of ME/CFS is still uncertain it could be secondary to that.

I’m already really ill so am used to feeling dreadful & am therefore quite stoic about side effects & am happy to persevere/tough it out until they wear off, so not too concerned about that.

However I am concerned about it making the EM worse… I’m already well aware of the majority of people saying it made their EM worse, so am steeling myself for that, but am particularly worried about it making it worse *even after i stop taking it.*?

So am particularly interested in any positive stories is there anyone on here where it helped you?

Also in people whose got worse but then got better & how long that took?

And people for whom it made it worse but did resolve back to their previous level after stopping it. I’d find that reassuring, I mean I’m willing to try anything as long as the worsening wont last.

Thanks in advance :slight_smile:

2

I can’t help with any feedback in regards to prescription meds. But I will say EM has destroyed my health through devastating my sleep - it has ravaged my body and my mind. I think I look like a meth addict due to being massively sleep deprived my whole life, despite never doing hard drugs.

The number one thing that helped me get more sleep was a water cooled bed. I went with 8 Sleep. Unfortunately, they’ve really gone up in price - but for me it’s like a “must have” medical device. I also discovered that memory foam mattresses and toppers make my EM way worse - just too much heat.

I’ve noticed my EM gets worse with stress - and hence my sleep gets worse with stress. The other thing that has helped immensely is experimenting with herbs before bed - to calm my body down. I’m currently taking 900mg of pantethine, 120mg of ginko, 1500mg of taurine, 500mg of tryptophan, and 1000mg of ashwagandha - before bed.

Finally, at age 49, I’m getting some decent sleep. Still not great compared to a normal person, but extremely improved, for me. Before using the water cooled mattress cover, and herbs, it would take me 2-3 hours to fall back asleep - a lot of times I’d never get back to sleep at all.

Now, the water cooled mattress combined with the herbs, I can usually get back to sleep within an hour, when I wake up hot - although it really depends on my stress level, and other things as well. Sometimes it’s right away, and sometimes it takes a couple hours. But my point is, these two things alone have helped improve my health greatly.

Just thought I’d pass it along in case it can help you.

3

Will have to check out the water cooled mattress… although i not sure about that, my EM flares even when i am cool in my body. It happens midwinter when i feeling cool, as well as when i get hot.
Part of what affects my sleep is getting cold because of the fan. I need the bottom of the bed to be cold, but not the rest of it, I’d be freezing lol, although i guess could wear thicker PJs.

Interesting, will have to look into that thanks.
The gabapentin makes me pretty drowsy & tried all those herbs except ashwagandha which i cant take (i cant remember why now).

I dont find stress has any impact on my flares though, seems totally unrelated.

We are all so different, I do wish they’d do some decent research, it seems there may be several different mechanisms at play for different people.

4

I kind of know what you mean. My hand and (mostly feet) would be roasting hot in the middle of the night but the rest of my body was cold - which made falling asleep extremely difficult. I use to get up in the middle of the night and run my hands and feet under cold water - which was quite jolting - then try to get back asleep before they warmed up again. My only input is that somehow the water cooled bed helps with all that. I think by wicking away the heat from the areas that are too hot. Don’t get me wrong - it’s doesn’t work miracles, but it does work well enough to help me get more sleep. 8 Sleep has a 30 day trial period - so although it is VERY spendy, you do have 30 days to decide if it’s going to help. So, the risk is low. Unfortunately, it only comes with a 2 year warranty unless you subscribe to their monthly maintenance plan - which is super lame.

In regards to herbs and supplements: You might try phosphatidylcholine and/or inositol. Both helped with sleep, for sure - but seemed to make me a bit tired the next day, especially the inositol. However, as I study my genome, I’ve learned that apparently I’m a slow metabolizer - so your experience may be different.

Good luck.