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Hi I started the drug nimtop at the suggested dose 1/4 tablet I'm scared to proceed because it made Me really unwell naseau dizziness grogginess headache. I know the book says it's fine to feel like this as it's removing brain toxins. If anyone could let me know if they went through same thing that be great.
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Ru
Dunoon, UK -4.926213999999959 55.950973 http://maps.google.com/maps?z=15&q=55.950973,-4.926213999999959 PermalinkAfter 14 years of fairly severe ME/CFS, I was lucky enough to have a doctor willing to give Nimodipine a punt in 2002. To my amazement and delight I noticed an instant improvement, recovering to 85-ish% of my pre-illness self by the end of the two months or so I took small doses of it for. I stayed that way for 14 years, with a few minor relapses, but unfortunately I'm having zero luck getting a repeat prescription from my current doctor, and ME/CFS support in Scotland seems virtually non-existent (what there is seems almost entirely reliant on CBT and even GET, which makes me very wary of getting plugged back into a system which did nothing useful for me before, apart from eventually prescribing Nimodipine) Does anyone have any suggestions?
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Guest - Dechi
Québec, Canada -73.5491361 52.9399159 http://maps.google.com/maps?z=15&q=52.9399159,-73.5491361 PermalinkI have been on Dr Mason's protocol for 5 weeks now. I don't tolerate meds well, so I have been using the drug in increments of 1/8 tablet. Right now I am at 18.75 mg per day, will be increasing by 1/8 again tomorrow or the day before. I had mental clarity increase a while back that lasted about 2-3 days. Right now I don't see many improvements, but my dose is probably too low for that. I had to stop Gingko biloba because of bruising (once) but didn't want to take the chance. I haven't started revenol yet, waiting for significant improvement before I do.
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Guest - James
Australia 133.77513599999997 -25.274398 http://maps.google.com/maps?z=15&q=-25.274398,133.77513599999997 PermalinkHello,
I'm 36 and I've experienced many symptoms of CSF/ME for over a year, no energy, brain fog, aching eyes, never getting refreshing sleep, low mood, headaches, dizzy... after sudden onset (just woke up one morning) in Jan 2015 and have never felt the same since. Stress in my life was high at the time as I was in a very demanding, difficult relationship, which I have now ended although the CSF/ME Symptoms remain. I've experienced little help from GP, specialists and realized after a while that this thing wasn't going away any time soon and that if I wanted to regain the quality of life that I'd become accustom to then I would need to do my own research and take matters into my own hands. I started by watching Youtube clips and reading articles but was disheartened to find that there wasn't a lot of understanding about the biological implications of the disorder and the only treatment seem to come as managing instead of curing. I then came across the book "Beating Chronic Fatigue" by Dr. Kristina Downing-Orr as you know and the Protocol regarding the use of Nimodipine looked promising. I then continued to do further research online as:
1. you want to make sure that the drug is safe and
2. if other people have found it to be beneficial.
Which has now brought me to this thread, I have purchased some Nimotop and also the other supplements suggested in Dr. Kristina Downing-Orr book relating to the protocol, which seems to be what is being discussed here. I am yet to begin the protocol and would be very very appreciative of any feedback, advice, guidance or anything that you may think I need to know before I begin. I'd also be very interested to know if you have discovered any long term benefits.
Thank you advance
Kind regards,
James.Like 0 -
That's good news about trying out antiviral medicine Maff. That's so strange as I have been in contact with Dr. Myhill very recently too and have asked her to prescribe me anti-viral medication! I have tried all her recommendations with diet etc with no relief. I was tested positive with a high IgG for cytomegalovirus when I was deteriorating in Oct. 2009...hopefully that's an indication that antivirals may work. I also asked her to prescribe me nimodipine as a primary treatment, but we shall see. I really appreciate you looking into who can prescribe it . Thanks,
TareqLike 0 -
Maff
England, UK -1.1743197000000691 52.3555177 http://maps.google.com/maps?z=15&q=52.3555177,-1.1743197000000691 PermalinkHi both, it's great to read you've been making progress with the nimodipine Faye, even if it's been slow and steady - any progress is a great result with CFS! Improvements in mental clarity can make such a difference in all areas of life can't they? I hope the benefits continue and build over time for you Faye. I'm in the UK Tareq so I'll try to help you find a doctor who prescribes and let you know here.
As for me, I got side-tracked by other things and didn't end up trying nimodipine in the end. I had a consultation with my doctor (Dr. Sarah Myhill) the other day and she suggested the best approach for me to try at this point would be the anti-viral drug valacyclovir. This is a drug that treats Epstein-Barr virus (EBV) which has long been thought to be an initial trigger for ME/CFS. Dr.Martin Lerner in the US has been researching herpes viruses in chronic fatigue syndrome since 1993 and has found the majority of patients have chronic EBV infection - and often co-infections with human cytomegalovirus (HCMV) and/or human herpes virus 6 (HHV-6). Dr. Lerner and now Dr.Myhill have found valacyclovir (and other medications in the same class for HCMV and HHV-6) often bring great improvements all round for ME/CFS patients with very few (if any) side-effects. My illness began with the classic 'recurrent viral infection that never really went away' scenario, so it makes sense for me to give it a go. I'll be having some blood antibody testing done first to help determine which if any of these herpes-family viruses I have and then trying the anti-virals (if I can afford them). A bit off-topic for this article so I'll write about my experiences in a new one - I just wanted to update you on what I'm doing/planning! Maybe it's something you think worth considering also?Like 0 -
That's really good news for you, better than no improvements at all. And I hope you continue to see more improvements as the weeks go by. I was wondering if you are able to tell me who precribed the medicine for you? I am having a lot of trouble in finding someone just now. I am based in the U.K.
Thanks,
TareqLike 0 -
Hi tareq, Yeah, I've definitely noticed a change in my mental clarity. I'm currently taking 15mg in the morning and 7.5 in the afternoon. I still have the dull, heavy headed-ness, which I'm sure you know about, but it's not as bad as it was. For two years I haven't felt mentally present, and I feel a little bit closer to being alert. I also used to have times where logging onto internet banking or writing an email was an impossible task, and I am a slightly more capable now. I hope it keeps working! And hopefully you'll have some results with too.
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I am on my ninth day of taking nimotop, so im taking 2 1/4 doses a day. my most debilitating symptom of M.E, is 'brain fog' and vision problems. I have noticed a very, very slight (albeit incredibly promising and exciting), improvement in the mental capacity, when it comes to understanding concepts/ ideas and concentrating. I have also noticed a slight improvement in my sensitivity to bright lights and garish colours, which I couldn't tolerate at all before. I cant wait to see if more improvements follow, as ive been living in a blurry, confused state for years, and I thought id never get out
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Nimodipine: Treatment for Chronic Fatigue Syndrome & Other Environmental Illnesses
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I first read about the drug nimodipine (Nimotop) being used in very small dosages to treat chronic fatigue syndrome (ME/CFS) and related 'environmental', or 'invisible' illnesses (e.g. fibromyalgia, multiple chemical sensitivity) over a decade ago. Looking back I am not sure what prompted me to cast it aside so easily as a treatment option but this is what I did. I think perhaps I was more focused on resolving my gut dysbiosis issues which I saw (and still see) as the main driver of my ill-health. I also was more averse to opting for pharmaceutical interventions than I am now. Regardless, after reading of the recoveries of Dr. Mason-Brown MD and psychologist Dr. Kristina Downing-Orr in the latter's book Beating Chronic Fatigue using nimodopine as the basis, I have decided it is time to give it a shot.
In the intervening period since reading about nimodipine use in ME/CFS I have managed to overcome multiple chemical sensitivities (MCS) and learnt methods to manage what was crippling and life-threatening seasonal affective disorder (SAD). Unfortunately I have found myself going around in many circles and hitting many brick walls when it comes to tackling the ME/CFS from which I have suffered for 20+ years. All reasonable options are therefore on the table.
Before I discuss how nimodipine has been used by Mason-Brown, Downing-Orr and numerous others to successfully recover from ME/CFS, let's first take a look at the drug itself. It belongs to a class of drugs known as calcium channel blockers. Nimodipine was originally developed as a treatment for high blood pressure (hypertension) as it relaxes blood vessels and improves blood flow. However, since its effects are specific to blood flow in the brain it is now used mainly in cases of cerebral vasospasm and constriction (narrowing of blood vessels in the brain which reduces blood flow and oxygen supply). For this indication the typical dosage is 60mg every four hours.
Ok, so let's move on to how nimodipine is used to treat ME/CFS, fibromyalgia, MCS and other related conditions. The basic logic behind the use of the drug is simple: these illnesses involve reduced cerebral blood flow - as demonstrated by functional imaging scans of patients' brains (e.g. SPECT scans) - and a build up of toxins, both environmental and derived from dysfunctional metabolism. This situation results in dysfunction of control mechanisms in the brain and elsewhere, such as the limbic system, hypothalamus, and hypothalamic-pituitary-adrenal (HPA) axis. Since nimodipine increases cerebral blood flow it addresses the first issue directly, but crucially as a consequence proponents suggest, it helps to mobilize and remove accumulated neurotoxins. The herbal remedy Gingko biloba is used in combination to promote blood flow in the rest of the body and aid excretion of these neurotoxins.
As Downing-Orr describes in Beating Chronic Fatigue: "Once these neurotoxins are reduced and then flushed out, your brain will function much better, because blood flow to the important gland master controls (the HPA axis) will increase. As a result, the healing mechanisms should then be switched back on, allowing your body to start to recover."
The dosages for this nimodipine protocol for ME/CFS and other environmental illnesses is far lower than that used to treat primary cerebral vascular problems. Dr. Mason-Brown outlines an approach he used to heal himself and many patients subsequently that starts with 7.5mg daily and slowly builds up to a usual nominal dose of 30-40mg/day and an absolute maximum of 120mg/day, depending on individual circumstances and treatment response.
Since research over the past couple of decades has created a solid picture of both cerebral hypoperfusion (poor brain blood flow) and central homeostatic dysfunction (dysfunction of brain areas regulating systemic function), I believe the nimodipine treatment approach outlined by Downing-Orr and used successfully by pioneering physicians including Dr. Mason-Brown and Dr. Jay A. Goldstein is certainly worth considering. As such I plan to embark on the treatment in the coming months and will document my progress in the comments section below. I will also setup a dedicated group in the EiR Community. If anyone has any experience using nimodipine in this way or has any other comments or questions please don't hesitate to comment below!
