Nimodipine is a dihydropyridine calcium channel blocker that was originally developed for the treatment of high blood pressure. Post stroke cerebral vasospasm is now the main indication for Nimodipine usage with dosages used of up to 540mg per day. It is also sometimes used to improve cognitive function in dementia patients and to lessen the pain associated with cancer.
Nimodipine’s possible symptom effects on ME patients
Nimodipine’s primary usage in ME patients is to improve blood flow in the brain.
Nimodipine may secondarily:
- Increase energy levels
- Increase exercise tolerance
- Improve mental clarity
- Improve orthostatic hypotension
- Improve migraines
Dr. Goldstein performed a study to compare the SPECT scans of CFS patients prior to and post Nimodipine treatment. He found Nimodipine improved patients’ SPECT scans.
Verapamil, another channel blocker that works through an alternate method to Nimodipine, was studied in 25 CFS patients. It improved the patients’ immune systems and memory while reducing fatigue and pain.
ME/CFS Specialists’ opinions on Nimodipine
The Canadian ME/CFS Guidelines suggests the use of Nimodipine as it acts “primarily on the cerebral circulation. Improves mental clarity in some but not all patients with ME, but may also have a global effect to increase relaxation, reduce fatigue, decrease tender points, and improve exercise tolerance. Common side-effects include hypotension, nausea, headache, bradycardia, skin rash, and peripheral edema. Start with 30 mg. Check effect on blood pressure. Gradually increase to 60 mg twice a day as tolerated.”
Dr. Mason Brown has seen many of his ME/CFS patients improve with Nimodipine usage. He writes, “Nimodipine helps twenty per cent (of ME/CFS patients) very quickly, another twenty per cent over six months, and all others to varying degrees over a period of time.” He improved his own health to 95% with Nimodipine usage as a treatment for his ME/CFS. He states “The work of nimodipine is at least fourfold: to release the backlog of neurotoxins and waste products from the brain, to open up the brain circulation, to allow in oxygen and nutrients to enter and to help cognitions, pineal, hypothalamic, and pituitary function.”
Dr. J. Goldstein, now retired, specialized in the treatment of ME patients in California. He used Nimodipine as a primary treatment for M.E. and has called it “one of the most useful treatments for ME/CFS and Fibromyalgia.” He also writes, “About 40% of CFS/FM patients taking nimodipine experience relaxation, increased energy, a decrease in tender point sensitivity, improved exercise tolerance, and enhanced mental clarity…. Nimodipine has been shown to release dopamine, serotonin, and acetylcholine…. Tolerance does not develop to the vasodiliatory effects of nimodipine, but sometimes does to its amelioration of CFS/FM symptoms.” He recommends taking 30mg to 60mg 3 times a day.
Dr. J. Teitlebaum suggests that CFS patients take 30 mg of Nimodipine 1 to 4 times a day.
A report of accounts of Nimodipine usage in 13 ME patients found four of them did not receive any benefit. The other nine all had improved mental clarity or general functioning; half of them achieved functioning of 50% to 100%.
Side Effects
The FDA has classified the side effects of Nimodipine based on doses every four hours, with each dose being 90mg (far higher than the recommended ME/CFS dose.) Based on this classification, less than 1% of the group experienced adverse effects. The most common side effects of oral Nimodipine are dizziness, light-headedness, flushing or swelling of the ankles/feet. Some patients with severe ME start with 1/16th of a tablet of Nimodipine to attempt to mitigate side effects. Grapefruit juice should not be consumed while taking Nimodipine as it may elevate blood levels of the drug.
Dr. Chaudhuri and Professor Behan from Glasgow found many of their ME patients on Nimodipine to experience hypotension. They concluded that it partially improved patients’ myalgia however the high incidence of hypotension caused them to cease using the drug.
Nimodipine is a prescription drug that is fairly expensive. It also has many drug interactions. A similar treatment to Nimodipine, that some patients may prefer for various reasons, is called ‘Nifedipine.’ Discuss the potential positives and negatives of Nimodipine with your doctor before taking it.
I tried Nimodipine with Dr Goldstein in 1999. It made me worse so I stopped it.
The thing with Dr Goldstein is that his treatment was to try out a whole lot of drugs on a patient. He would do it one after another on the same day. If one drug helped or made you worse, he used that information as to whether try another drug. His treatment was the to try a whole lot of drugs, singly or in a combi, not just Nimodipine. Some people had a miracle improvement from one drug, some needed a few in combination and some had no improvement from anything he gave. I was in the no improvement group, although to be fair, I was only 2 weeks at his clinic. I didn’t get to try it all.
If you get worse or better on Nimodipine you should feel it on the same day.
I wish Dr Goldstein’s wealth of knowlege + experience could be used by more doctors. So far they only seem to notice Baclofen and Clonex out of the umpteen drugs he used. OTH Goldstein’s treatment seems to me to be mainly symptom suppression – which is a good thing if you are suffering but it would be even better to have something that addresses the cause of all this.
Just reading a paper about Magnesium which refers to Magnesium being found to be more effective than Nimodipine here: Belfort MA, Anthony J, Saade GR, Allen JCJ. A comparison of magnesium sulfate and nimodipine for the prevention of eclampsia. N Engl J Med. 2003;348:304–11. [PubMed]
Am currently looking into suggestions that magnesium applied topically could be of massive help to cfs, as you can absorb far more than when taken orally. Only just started looking, so no conclusions yet, but probably the one thing i havent tried yet in 20 years of cfs!
NB The paper I’m reading is here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1855626/#b102-cbr24_2p047
If it was used to help high blood pressure, would that mean it would be no good for those like myself with low blood pressure?
@Sherrie
Unfortunately, I don’t think there is a black or white answer to your question. I regularly checked my blood pressure while on the drug as this too was a fear of mine. I have mildly low blood pressure (yours is probably much lower than mine) and the Nimodipine didn’t affect it (although my dose was small.)
In the Glasgow hospital in which Nimodipine was prescribed to many ME/CFS patients, the lowering of blood pressure was significant enough that it caused the doctors to cease any further Nimodipine treatments.
A physician may be able to provide more details regarding whether a low dose of Nimodipine is likely to reduce your specific blood pressure.
Hey there 🙂
That’s the million dollar question (a physician may…) I was seeing Dr Baratosy but hes gone too Tasmania so I am physician less atm. I am managing ok with pacing and fatigue but the brain fog is hard and now I have become so absent minded of late it’s really starting to bother me. My 96 year old grandmother (now deceased) was more switched on then me!
I remember you went quiet on here, I hope you’re doing a little better.
Good luck and thanks for your reply.
@ Sherrie
Has Dr. Baratosy moved to Tassie permanently? Occasionally I email fellow Adelaide ME/CFS patients with a list of doctors who treat this illness and I always include his name however I may need to remove it! I am sorry to hear that the brain fog is so severe for you at the moment. Similarly to you, my 98 year old Grandfather is more active than me.
I’ve been much the same and have been meaning to write a blog entry for some time. Hopefully I will post one in the coming weeks.
All the best,
Hey there 🙂
It seems that way, his website went down with no warning a couple of months ago.The other day, I finally reached my limit after coming close to draining our rainwater tank (we have no mains) because I left an outside hose on and was none the wiser (I keep leaving taps on lately), my partner is away and my daughter is with my mum to give me a break so I only noticed it by chance when I decided to try and walk to the post office and walked past the rain water pump, otherwise I would never have noticed. So, I decided to make an appointment.
So I called up the Adelaide clinic and the lady just very abruptly said no he’s gone to Tasmania, bye and hung up. So I emailed him through his hotmail hoping he could recommend a Dr with some experience and he just kinda fobbed me off telling me to check ACNEM.
BTW did you go in the study at UniSA?
If you want, I can email you the list of ME/CFS treating doctors I’ve compiled that are in the Adelaide vicinity.
Hi there, I am recently new to Adelaide and am needing to find a doctor who understands ME/CFS. I had a great doctor in Canada, but unfortunately I can’t still be treated by him. Have had ME/CFS for 10 plus years now. I haven’t had any luck with the doctors I have been to so far here in Adelaide. Would you be so kind as to also provide me with a list? I am feeling so lost here. Many thanks!
@Tamara I just emailed you the list of Adelaide doctors.
Wishing you all the best.
That would be great 🙂
Sorry I didn’t mean that type of study, sorry I couldn’t think of the type of study and the researcher at the time, all I could think of was where it was at.
This is what I mean:
Volunteers in Adelaide, South Australia for Carnitine/Fatty Acid study
http://forums.phoenixrising.me/index.php?threads/volunteers-in-adelaide-south-australia-for-carnitine-fatty-acid-study.19249/
cheers
Hi there
I’m looking at starting the Dr Kristina Downing-Orr program (based on Dr Mason-Brown’s work) which recommends taking nimodipine.
I spoke to my GP and they have agreed to prescribe me the drug – well I think so, except they have given me nifedipine instead. She has said that it’s the same drug as nimodipine, just produced by a different company.
However, I don’t believe she’s correct as my research seems to say differently – although they are the same class of drugs (calcium channel blockers), just looking at the Wikipedia for example shows the two drugs have different chemical symbols for starters and there seems to be differences on dosages/how the drug is released into the body in some examples.
Does anyone know the answer for sure? I am suffering from a lot of anxiety about it as I don’t want to take something different which doesn’t match the protocol.
Many thanks and great work on the blog.
@ David
You are correct, Nifedipine is definitely a different drug to Nimodipine. You are also right that they are related drugs. Nifedipine is more focused on improving peripheral blood circulation while Nimodipine works more on improving blood circulation in the brain. Personally, while researching about what drug I should take, I was at times tempted to try Nifedipine however in the end I opted for Nimodipine. From what I have read, Nimodipine seems to have been more commonly used to treat ME/CFS.
All the best.
I really appreciate the quick response, thank you so much.
As I thought then – it’s pretty frustrating trying to get anywhere with this as it always feels like there are little roadblocks in the way to get treatment (which as I’m sure we all know, little roadblocks to CFS sufferers can be like huge mountains).
The GP is writing me a letter in due course to outline why she believes the drugs to be the same, so I’ll have to respond to her. She doesn’t seem to have any problem prescribing the drug so I hope it won’t be too big an issue.
Thanks again 🙂
Hi just a quick update. Got the letter and then replied back incorporating your point. Got a call today confirming she’s agreed to the nimodipine prescription so the battle has been won!
Many thanks for your help.
@ David
I am very happy to hear that you have obtained the Nimodipine. Hopefully it is beneficial to you. Wishing you all the best with your health.
Hi David,
Could you please tell me which GP you been seeing? I am having trouble finding someone to prescribe Nimodipine. 4 years ago I was informed that the information in Dr Kristina Downing-Orr’s was rubbish and dangerous which put me off for years but I am desperate again and am wanting to try after finding this site.
I would also be very interested to hear how you got on with the drug?
Also, have you attempted the nutritional version in the book?
Many thanks
Hi AB
Sorry to hear you’re finding things difficult.
The doctor who prescribed it for me was a lady called Dr Hasan at a surgery in Martock, Somerset (I am registered there). She prescribed it on the basis that she felt that, at the dosage suggested in the book, the risks of side effects/damage were negligible. I don’t know however if she would prescribe this to other people, it kind of felt like a “one-off” for me, if you know what I mean. Can’t hurt to ask though 🙂
As it turned out, the drug didn’t work for me (the monitoring symptoms of facial flushing/headaches etc kept occurring even at dosages below the lowest recommended start point in the book, so I gave up!). And like you say, I didn’t feel 100% comfortable taking a drug like that for what is an “off-label” purpose/usage.
I didn’t try the nutritional version in the book though.
There are a couple of other people you might want to add to your list to try :
– Dr Barry Peatfield – a thyroid/adrenal specialist based in Crawley. I know someone who had a lot of success working with him;
– Marek Doyle – who I am working with currently. Seems to have his head screwed on and a lot of interesting ideas, but I should stress I am yet to see any improvements from working with him as yet – although I am hopeful!
Both of these people can be found via Google searches.
All the best
I should just add, for your wellbeing, that if you do decide to take the nimodipine to be careful, as there is no guarantee it won’t do more harm than good! Although I think you understand the risks involved from the tone of your post 🙂
Hi AB
I think my original post got swallowed/lost somehow. So apologies if my reply is a bit brief.
I got the nimodipine from a Dr Hasan at a surgery in Martock, Somerset. I’m not sure if she would prescribe it again, it kind of felt like a “one-off” to me – although that’s not to say you shouldn’t ask her to see if she would prescribe it again. NB I was registered at the surgery already, however.
The nimodipine didn’t work for me – the side-effects of flushing/headaches occurred at a dose lower than the suggested starting dose so I gave up! I didn’t try the nutrition route.
I should just add, for your wellbeing, that if you do decide to take the nimodipine to be careful, as there is no guarantee it won’t do more harm than good! Although I think you understand the risks involved from the tone of your post.
Unrelated to the Dr Downing-Orr, there are a couple of people you might want to have a look at (if you haven’t already) :
Dr Peatfield – adrenal/thyroid specialist in Crawley. He was a big help to a friend of mine with ME/CFS (although didn’t work for me);
Marek Doyle – adrenal fatigue nutritional medicine expert, based in Basingstoke/London. I’m currently working with him, no progress as yet but I’m hopeful – I’ll update if I get anywhere
Both can be found by Google searches.
All the best
Hello David and cfssufferer,
I am also thinking about starting Dr. Kristina Downing-Orr’s program. I am going to the doc in a few minutes actually to ask if he will prescribe the Nimodipine. Can you tell me if you are still taking it and how it is working for you?
Thanks so much.
Emily
@Emily
I didn’t really notice any benefits from taking the Nimodipine and at the time I experienced some new symptoms although I’m not 100% convinced they were caused by the Nimodipine.
A summary of my experience with this drug can be found here: https://livingwithchronicfatiguesyndrome.wordpress.com/2013/02/14/nimodipine-the-results/
All the best
Hi david.
I have had ME for 6 months and I’m considering going with marek Doyle as I liked his article. I typed his name and reviews into Google and your the only person that has given any info on him. I know it’s only been a week or so since your last post but Are you finding any improvement? What approach does he take?
John
Hi John
I’m yet to see any improvement with him, however I’ve only tried a few things he suggested to date (so far I’ve had a change in dietary habits and tried a couple of different supplement courses he recommended) – it seems from my perspective to be a bit of a trial-and-error process to get to the bottom of what is going on although he’s never hidden from this and he’s been very clear what he thinks is causing my issues.
This articles gives some useful background on his approach:
http://www.blueprintfitness.co.uk/will-i-recover-from-cfs-and-in-how-long/ (I can’t remember if I already posted this on another comment!)
If you look elsewhere on his site, he sets out his terms of engagement, pricing etc.
I contacted him by email through his website and he came back to me promptly – initially he took a detailed health history from me and asked about my current symptoms, then gave me his thoughts and explanations and started a treatment protocol based on that (you don’t have to see him in person it seems) – based around diets and non-prescription supplements/herbs/remedies etc for me.
I suggest you drop him a line and ask him for more details as I would imagine he treats each case differently!
Hope that helps.
David
Thankd for swift response david. I currently follow a very strict diet and take supplements such as d ribose, co q10, acetyl l carnitine. Is that the kind of supplements he suggests?
Also how would you compare him to dr myhill? Have you been too or considered her yet? Im thinking going one or other.
I haven’t seen mareks name mentioned but like you like his article.
It’s tough knowing where to invest your money.
Have you had ME for a while? How’s your recivery? Sorry for all the questions but it’s lonely place.
John
Hi John
I haven’t been told to try any of the supplements you mentioned by Marek, but that doesn’t mean he doesn’t propose them to some people – again you’re probably best speaking to him directly… if you go with him he’ll advise what to do.
I haven’t tried Dr Myhill out so I can’t comment I’m afraid.
I’ve had issues with ME on and off for about 10 years, but was able to function relatively normally until about 3 years ago when I crashed and didn’t recover, so have been off work since. I have been round the houses and tried so many things but I’m still hopeful of a recovery!
All the best and hope whichever route you choose works for you.
David
Thanks david.
Like you I’m exhausting lots of options. I will get a chat with him and look for consultation from there. The only other question I was going to ask is did he recommend tests such as adrenal ones etc for you to get done? It seems a good avenue to go down but a lot of people say that trying to sort these problems quite often doesn’t help ME.
John
Not a problem.
I know that adrenal function tests are part of his “armoury”, so to speak, but as per the link I posted earlier I think adrenals are just one of a number of areas he looks at.
Marek hasn’t ordered an adrenal test for me yet, although I’d already had an adrenal test done by another practitioner who i’d seen previously and that showed my adrenal function wasn’t up to scratch – so I advised Marek of this when he took my history. I don’t know if that impacted on the treatment protocol he proposed for me or not.
Without meaning to repeat myself, he’ll be able to advise you better if/when you speak to him :o)
Hope you found this helpful!
David