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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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