Nifedipine experiences/comments please

Symptoms and Treatments
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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:

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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.

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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.

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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.

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I was diagnosed 13 years ago and I understand and am so sorry for your suffering. I am not cured but so much better with a lot of trial and error. After the first couple of such awful suffering I went to Cleveland Clinic vascular doctor. He did numerous tests but could not diagnose a cause. He had me try some compounding creams which didn’t help but then tried cyproheptadine which was the first thing that actually seemed to work. Through some research I discovered a doctor who also had em. The cyproheptadine helped him but he also added aspirin and magnesium. This combination worked for some relief for me also. Over the last couple t years I have discovered that instead of wearing sandals and always keeping my feet cool was not helping but actually making my flares more frequent. I started wearing shoes and socks and leaving them on most of the day was better. Yes they were hot but not like a flare that I couldn’t tolerate. It was hard at first but became easier. Further help came from using capsaicin or bengay morning and night. It does burn somewhat but it really helps after a while. I think it is a lot of trying different things to find what works best for you. I really didn’t think I would ever get the relief I now have. I’m so thankful for it. I hope this is some encouragement for you. My prayers are with you.

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Sorry to read of your suffering.
I haven’t tried nifedipine but I think it would be worth a try, your doctor may have read an article where it has helped.
One thing we all have in common is that we have to try different things and usually we get on to something.
Bob’s protocol is particularly worth persevering with, if you are unsure what it is just put it in the search engine on this website. Put in kiwi to see what I currently take.
It appears only your feet are affected at this stage, if so I believe you have a very good chance of finding good relief.
I wonder what you did for a career and whether it involved a lot of standing.
I would suggest trying to keep your weight down and exercising as best you can, particularly swimming if possible.
I have found it best to walk with light socks in comfortable sneaker type shoes. I am not sure if I am able to recommend the brand on this site but they are flexible with a sole that somewhat ressembles half circles, not the usual hard plastic.
Keep trying, I am confident you will find success.

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You can absolutely share the brand as your personal preference

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Hi thank you I am definintely going to try it, I’m starting tomorrow infact!

I am unable to exercise at all, not because of the EM, I’m mainly bedbound due to severe ME/CFS (very disabled need carers) I can walk (sometimes only crawl) only to bathroom & back. I am much too weak to leave the house other than very occasionally in wheelchair for an hour or so to medical appts.

However 25 yrs ago my career involved standing for 8-10hrs a day for the first 15yrs of my adult life, before I became ill. But the EM has only started about 2.5yrs ago, so not sure if relevant?

I spent so much money trying to find shoes that were wide enough, my carer ordered dozens of different pairs for me to try on (all supposed to be extra wide & cushioned!) but I found only 1 pair of ugly extra wide mens sneakers (I am female), and some sandals with velcro - all at least 1 size bigger than previously. They were literally the only ones i could get my feet into.

But since the extent of my life is usually only staggering or crawling from bed to bathroom, the shoe issue isnt really a big deal, although it felt it at the time, 3mnths after it started.
But yes pls do share if you found a brand that are helpful for you!

I saw someone else mentioning the compression socks which i definitely going to try.

I read about Bob’s protocol & wondered about it, thanks for the tip I will check it out further.

Thanks again for the support & ideas I’ll come & feedback what happens with the Nif.

Re it being just my feet - yes. Although I have had incidents of short periods (say 20mins) of red, warm hands & knees, but there is no swelling or pain, & not hot to the touch like my feet get so am hoping that its going to stay that way. Seems pretty stable so far, Praying it stays that way!

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Hi. It is ok to share brand of the shoes I have found most helpful.
They are Skechers Gowalk 7 extra wide, shoe number 21663WW/NVOR
I have 4 pairs but this is not necessary as they are long lasting and washable.
All the best

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Thanks so much for responding Kiwi.

Yes I tried several skechers ones, including the gowalk. Sadly they much too tight, couldnt get my foot in them even at 2 sizes bigger. The issue for me is the depth (ie the amount of space from the top of the foot to the sole, especially at the toe end) rather than only the width. All the skechers ones i tried including those are much too flat/shallow at the toe box.

No worries I’m sure someone will find that info helpful.

I tried the nifedipine today, 2 doses (i’m on 5mg 3xday). Made my face flush very red & hot, a terrible headache, palpitations & shocking pulsatile tinnitis, for the first couple of hour or so. but it wore off after i ate some salt & drank a litre of water. Think it must have dropped my bp a bit low.
My feet been quite bad tonight so far but no worse than usual so we shall see

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Bob’s protocol. I bathe my feet in an old plastic basin, water at around 105 degrees Fahrenheit or 42 Celsius. I start at around 5.30 pm for half hour, then repeat later on at 9 pm. Sometimes I repeat again around 1am. I usually find it gives great relief and just the fact of getting up and moving around seems to help as well. All the best.

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Sorry forgot to say I add a teaspoon of Epsom salts, magnesium sulphate, to the Bobs protocol brew. For the 1am soak I just boil some water and add to get the temperature back up.
Strangely I have noticed I get better relief if I lie on my back as opposed to on my side, although later I can switch to my side once it has settled. Just got to experiment I guess.