Nicorandil.....A role in treating CFS

[MeSci]

I was eating carbs and having diarrhea every day, only white rice really, I've tried rotating all sorts of food and carbs and any time I add carbs in my gut gets painful and bloated, even gluten free grains seem to mess me up, although it's a slower process, I've had lots of stool tests and sibo/breath tests done and my beneficial bacteria is still very high somehow(probably from avocados). I tried resistant starch for a couple months, and saw small improvements, but it didn't do anything miraculous, potatoes give me really bad intestinal pain

So you do eat some fruit/veg (avocado). That will give you some carb.

Not sure if you are in the USA, but I understand that white rice in the US is fortified with folic acid. I wonder if that could cause gut problems. There are others here who know a lot about folic acid.

Maybe worth trying RS for longer? Or a different kind or different amount? But you should be OK for carbs if you're eating some fruit and/or veg.

 

[tdog333]

I am in the USA, that's a good thought, I have a bad mthfr mutation c677t so I am very sensitive to folate, I bet that was messing me up too. I will try the RS again, it's been awhile so I will give it a good shot and see how it goes

 

[kangaSue]

Any updates? I have been clear of CFS for about a year now, my energy is great, however I have horrible gastroparesis and nausea, any time I eat anything, water included I get bad bad bad nausea and headaches, it gets worse the bigger the meal I eat. I've had all the work ups done and nothing major can be found, I've tried quite a few herbs, nothing really works. They only thing that gives me any relief is peppermint oil, I take a ton of peppermint oil which takes the edge off the nausea, but I have to dose it every 20 minutes or it wears off. I'm thinking about giving Nicorandil a try. My doctor said he thinks it might be worth a shot.

PS: I stick to a very strict diet, only meat really, and some fat, carbs really mess me up for some reason and give me bad colon pain.

Edit: Also has anyon

Recent events explain why nicorandil has become less effective for me, I have a new diagnosis of Chronic Intestinal Pseudo-obstruction now adding to my G.I. issues, along with a high likelihood of also having SIBO.

I still find that nicorandil is beneficial for the gastroparesis (GP) but can't say I have heard of anyone else using it for this. It occurred to me that I have always been taking domperidone while on nicorandil so in hindsight, it could be that combining a motility promoter with a vasodilator is better than either alone.

Eating becomes more problematic for me if I stop one or the other or play around with reduced doses but prior to starting on nicorandil, I couldn't do an oral diet on domperidone alone.

If you look at the statistics into the ulceration side effects from nicorandil, you will find that they most commonly occur in cases where the person is taking the maximum safe dose, 20mg twice daily. If you already have a problem with mouth ulcers a cautious approach is warranted but I had symptom relief from the first small dose of 5mg once daily which would likely be a safe dose even in this circumstance.

The only side effect that I have had from being on the highest safe dose of nicorandil is a minor skin rash which requires the occasional cycle of a topical steroid cream to clear it up. At it's worst, I would have about a dozen scaly skin blemishes about the size of the small finger nail, mostly on the thighs.

 

[tdog333]

Recent events explain why nicorandil has become less effective for me, I have a new diagnosis of Chronic Intestinal Pseudo-obstruction now adding to my G.I. issues, along with a high likelihood of also having SIBO.

I still find that nicorandil is beneficial for the gastroparesis (GP) but can't say I have heard of anyone else using it for this. It occurred to me that I have always been taking domperidone while on nicorandil so in hindsight, it could be that combining a motility promoter with a vasodilator is better than either alone.

Eating becomes more problematic for me if I stop one or the other or play around with reduced doses but prior to starting on nicorandil, I couldn't do an oral diet on domperidone alone.

If you look at the statistics into the ulceration side effects from nicorandil, you will find that they most commonly occur in cases where the person is taking the maximum safe dose, 20mg twice daily. If you already have a problem with mouth ulcers a cautious approach is warranted but I had symptom relief from the first small dose of 5mg once daily which would likely be a safe dose even in this circumstance.

The only side effect that I have had from being on the highest safe dose of nicorandil is a minor skin rash which requires the occasional cycle of a topical steroid cream to clear it up. At it's worst, I would have about a dozen scaly skin blemishes about the size of the small finger nail, mostly on the thighs.

Thanks for the update, I'll start slow, how fast did you notice relief? I have heart and chest pain too when i exert myself, and sometimes even for no reason, I'm pretty young too so it's strange. The symptoms seem to mirror angina, and that is what nicorandil is intended for, so I convinced my doctor to let me try it, I'll post back my results. I have lots of muscle spasms as well as headaches, so I think something is off with my potassium channels or blood flow.

 

[kangaSue]

Thanks for the update, I'll start slow, how fast did you notice relief? I have heart and chest pain too when i exert myself, and sometimes even for no reason, I'm pretty young too so it's strange. The symptoms seem to mirror angina, and that is what nicorandil is intended for, so I convinced my doctor to let me try it, I'll post back my results. I have lots of muscle spasms as well as headaches, so I think something is off with my potassium channels or blood flow.

I was initially using nicorandil for pain relief, that happened overnight from the first 1/2 tablet, 5mg. It was a couple of weeks before I realised I could eat more things again and had titred up to 5mg twice daily by then. I was back on a totally oral diet at four weeks and 10mg nicorandil twice daily. I didn't have any of the those angina-like symptoms to contend with. Headaches are a common symptom on starting nicorandil but I was never bothered by them, not that I get headaches in general though.

 

[MeSci]

I couldn't do an oral diet on domperidone alone.

I wonder if my doc would prescribe Dom Pérignon instead...well - it sounds similar - isn't that good enough?

 

[kangaSue]

I wonder if my doc would prescribe Dom Pérignon instead...well - it sounds similar - isn't that good enough?

For sure, close enough is good enough in my book, now that's my kind of liquid diet.

 

[kangaSue]

@deleder2k if you haven't seen this thread thought you would be interested. I definitely am glad to have seen this!

Nicorandil is a dual mode of action vasodilator that stimulates sGC like the newer drug Adempas that Fluge/Mella have been using on patients with success, but nicorandil has been around a long time and is far cheaper.

Stimulation of sGC is the target of all the nitrates. The additional benefit to be had from Nicorandil and the newer Adempas is that both drugs also stimulates sGC through different binding sites independent of NO thus overcoming the tolerance issues that develop with other nitrates if they are not given a 12 hour break each day.

 

[kangaSue]

I've had a new development. I was trying to get a trial of Dexamphetamine as it can raise the b.p. as well as alleviate pain in some situations.

http://www.ncbi.nlm.nih.gov/pubmed/21835553
http://www.ncbi.nlm.nih.gov/pubmed/21077500
http://www.ncbi.nlm.nih.gov/pubmed/17937098

My G.I. motility specialist would only consider prescribing it if I had proven autonomic dysfunction, which she doubted, but organised an Autonomic Function Test anyway.

Results have come back as Restricted Autonomic Neuropathy from evidence of impaired cardiovagal and sudomotor functions. The G.I's still not prepared to prescribe me Dexamphetamine in the face of supporting evidence, has now put the onus on getting a Neurology consult first, but things are pointing to a gradual onset of Autoimmune Autonomic Ganglionopathy to explain all my gastro and low b.p. symptoms.

 

[kangaSue]

I forgot to add the important bit that might relate to ME/CFS. Autoimmune Autonomic Ganglionopathy is sometimes diagnosed in those who have POTS, as well as those with just Orthostatic Hypotension. Seems to be more prevalent where there is also a sweating dysfunction present as well.

AAG fits in as one of the neurological channelopathies that can occur as a result of having ME/CFS.
http://phoenixrising.me/research-2/...annelopathy-in-chronic-fatigue-syndrome-mecfs

I didn't realise that I wasn't sweating much, something that was more noticeable to my partner for the last 18 months but he didn't think to mention it.

 

[MeSci]

I've had a new development. I was trying to get a trial of Dexamphetamine as it can raise the b.p. as well as alleviate pain in some situations.

http://www.ncbi.nlm.nih.gov/pubmed/21835553
http://www.ncbi.nlm.nih.gov/pubmed/21077500
http://www.ncbi.nlm.nih.gov/pubmed/17937098

My G.I. motility specialist would only consider prescribing it if I had proven autonomic dysfunction, which she doubted, but organised an Autonomic Function Test anyway.

Results have come back as Restricted Autonomic Neuropathy from evidence of impaired cardiovagal and sudomotor functions. The G.I's still not prepared to prescribe me Dexamphetamine in the face of supporting evidence, has now put the onus on getting a Neurology consult first, but things are pointing to a gradual onset of Autoimmune Autonomic Ganglionopathy to explain all my gastro and low b.p. symptoms.

Good luck, but I would offer some warnings about amphetamines. They can cause loss of appetite, insomnia, polyuria, etc., and can be addictive. They can have horrible side-effects when they wear off, such as pain, anxiety/paranoia, hallucinations, etc.

I have been addicted to them myself, so am somewhat evangelically anti now!

 

[kangaSue]

Good luck, but I would offer some warnings about amphetamines. They can cause loss of appetite, insomnia, polyuria, etc., and can be addictive. They can have horrible side-effects when they wear off, such as pain, anxiety/paranoia, hallucinations, etc.

I have been addicted to them myself, so am somewhat evangelically anti now!

I appreciate the warning, I know they are addictive drugs but I'm only looking at taking a maximum dose of 15mg a day which is less than half what is prescribed to some kids for ADHD.

Not sure that I would notice any difference with amphetamines anyway. I haven't had an appetite for 15 years, I already spend half the night awake from the G.I dysfunction and pee very little on a good day.

 

[Hip]

I finally got round to buying some nicorandil, and when it arrives in the next few weeks, I will be trying it out.

At www.buypharma1.com where I bought mine (they only take bitcoin), it costs $10 for 10 x 10 mg tablets.

At www.alldaychemist.com it costs $10 for 20 x 10 mg tablets.

 

[Hip]

I recently took nicorandil 10 mg daily for three days in a row, with no noticeable effects on my ME/CFS symptoms.

I am not sure if I should take it for longer.

I also tried some nitroglycerin a while ago, and also noticed nothing.


The only nitrate effects I find are from taking potassium nitrate in doses of 1 to 2 grams. This I find increases my conscious awareness to a small degree, and creates a slightly calmer more relaxed mind.

I tend to take potassium nitrate transdermally rather than orally, as I believe in the stomach, potassium nitrate can be converted into the carcinogen potassium nitrite.