ME/CFS and the Change of Seasons: How Does This Affect You?
The advent of autumn can hit Jody Smith pretty hard. She's learned a few ways to lessen the damage every year. How do you handle the change of seasons?
Discuss the article on the Forums.

Anyone heard of or tried NSI-189?

Discussion in 'General Treatment' started by SeanQHX1, Nov 29, 2018.

  1. SeanQHX1

    SeanQHX1

    Messages:
    26
    Likes:
    33
    Glasgow, Scotland
    Hi again everyone! I've recently been considering trying the experimental nootropic NSI-189 after doing some research and hearing so many promising stories from people on forums saying that it cured their anhedonia and vastly improved their cognitive and emotional functions, as well as their vision. There are all problems I'm having which have been ongoing and on continuous decline since I took a mystery post-viral illness two and a half years ago. As a result, I feel as if I've lost half of my personality and my existence is fading away to nothingness.

    Currently my main problems include: disabling levels of brain fog (causing increasingly ultra slow processing and information/word recall but memory and learning isn't affected), emotional flatlining, deteriorating field of vision (but great eyesight), increasing tiredness (different from ME/CFS fatigue), and a worsening daily headache that feels like my brain is being bathed in battery acid and rubbed with sandpaper.

    As I still haven't been getting much further on with doctors and have been having to wait months and months for appointments and tests while my health continues to deteriorate, I've decided I want to take a small leap of faith and try this experimental nootropic, knowing that this illness will only keep getting worse if I just leave things the way they are for long periods of time. And I've almost given up on anything considered natural or holistic as they have had zero effect on this illness and the rate of it's progression.

    What are your thoughts on this? Has anyone here experiencing similar issues to mine tried this nootropic and noticed any major benefits?
     
    Moof likes this.
  2. Moof

    Moof Senior Member

    Messages:
    462
    Likes:
    1,122
    UK
    @SeanQHX1, I've never heard of the treatment, but wanted to ask whether you've had recent methylmalonic acid and homocysteine blood tests? I'm a bit worried that some of your symptoms could be due to a severe B12 or folate deficiency.

    I might be completely wrong, but when I developed B12d I had some of the same issues, including uncharacteristic depression, loss of emotional responses, appalling headaches, and visual field narrowing. Plus tinnitus, mouth sores, peripheral neuropathy, and after several years, losing lifelong skills and showing symptoms of early dementia.

    I also kept trying to explain to the doctor that the new fatigue was not at all like the type I get with ME, but he just didn't believe that types of fatigue could be differentiated. Mine were about as alike as chillies and cherries – both fruits, but you wouldn't confuse them.

    The GP had tested my serum B12 early on, but didn't realise it's an unreliable test. I'd lost the ability to absorb the vitamin from food; luckily, most of the symptoms resolved within 10 to 12 weeks of alternate-day injections supported by extra folate.
     
    Mary and SeanQHX1 like this.
  3. SeanQHX1

    SeanQHX1

    Messages:
    26
    Likes:
    33
    Glasgow, Scotland
    @Moof I agree, this illness does share a few neurological symptoms with B12 deficiency, especially the emotional loss, vision field narrowing and severe headaches. I don't have any confusion or behavioural changes though, but my brain is definitelly getting slower and slower, almost like an old faulty compluter. The fact I'm also autistic might be the reason I have a more unique form of brain fog, since neural pathways in my brain are likely a bit different. I am also a vegetarian but do however take B12 suppliments daily which have no effect on any of my symptoms. I've also tried several nootropic stacks containing B vitamins which have had no effect on me either. I don't believe I've had any recent methylmalonic acid and homocysteine tests, I'll mention those next time I see a doctor as it's another thing definitelly worth rulling out.

    In the meantime, I'll try a few more nootropics and see if they at least alleviate any of the symptoms or delay their progression somewhat. NSI-189 apparently promotes neurogenesis in the hippocampus, but I'm not even so sure if there is anything wrong in this area as memory isn't really affected. And drugs that I've tried that are along similar lines gave me zero benefits, while having scary side effects that seem to be caused by my illness reacting to them, rather than the drug itself.

    May I ask, did your B12 deficiency symptoms appear suddenly or were they a more gradual onset? B12 deficiency as far as I know is usually a gradual onset, not sudden, as the body can store B12 for days. Although B12 deficiency might not be the root cause of this illness, it could be part of the reason it's been getting worse since the onset.
     
  4. Moof

    Moof Senior Member

    Messages:
    462
    Likes:
    1,122
    UK
    @SeanQHX1,

    Me too!

    The liver recycles B12, so it can store it for years. When people develop malabsorption, it's often between three and five years before noticeable symptoms show. Looking back, my onset was gradual, but the worsening that made me notice it was sudden. Hair loss, increasing numbers of mouth sores, and a significant change in my pattern of fatigue seemed to appear together within the course of about three weeks, and tinnitus onset was overnight.

    I'd been on daily oral supplements for around 15 years when my deficiency developed. If you can't absorb it from food, you'll take in very little at cellular from supplements – this is why people with malabsorption need to take it by injection. (Taking supplements will also skew serum B12 tests, but having good serum levels doesn't necessarily mean you're not deficient.)

    One of the common causes of malabsorption is h. pylori and gastritis, which I'd had for several years without knowing. I had no major symptoms until the final couple of months, yet the endoscopies showed damage in several part of my stomach that suggested I'd had it for a long time.

    It seems that a significant proportion of people with ME benefit from B12 injections and oral folate supplements even if they have no clear evidence of a deficiency. I don't think we understand why this happens, but as it's a very cheap treatment (about £0.65 per injection here) that can easily be self-administered, it's worth trying.

    As you say, I might be completely wrong – your symptoms could be ascribed to any number of things, including multiple causes. The NS-189 may well help...I hope it does, as you're having a pretty miserable time of it!
     
    SeanQHX1 likes this.
  5. SeanQHX1

    SeanQHX1

    Messages:
    26
    Likes:
    33
    Glasgow, Scotland
    @Moof My pattern of symptoms are a bit different. Just before the illness I was doing a rather advanced and technical college course on sound engineering which I had almost completed. But one day I got up and went to college. It seemed just like any other day untill I loaded up my college work on a the computer and with shock found myself unable to think of anything to write, my mind was completely blank. If this sudden, overnight brain fog hit me 5 days later than it did, I would have completed the course. It started off only with more complex tasks like this but as it has progressed, it now severely affects my social abilities and emotional responses. I still trying to get my head round what could cause sudden, drastic cognitive decline like this to happen overnight.

    I'll get my B12 levels checked acurately as low absorption could have been caused by the illness and be contributing to the ongoing decline. I might even benefit more from injections as I've always suffered from chronic constipation and lazy bowels likely making absorption difficult.

    I'm hoping the NSI-189 helps somewhat in the meantime untill I finally get to the bottom of my illness.
     
  6. Moof

    Moof Senior Member

    Messages:
    462
    Likes:
    1,122
    UK
    Yes, that does sound very different to typical presentations of B12 deficiency, @SeanQHX1. The only things I've come across that can cause sudden onset like that is ME itself, which can start overnight; and Wernicke's encephalopathy, which is usually caused by long-term alcoholism but can be due to issues such as severe thiamine malabsorption.

    A pregnant neighbour developed Wernicke's, and it literally came on overnight – she was so blank and confused that I thought she might have had a minor stroke. I called an ambulance, and she was later diagnosed with Wernicke's caused by severe pregnancy sickness (in her first trimester she'd been vomiting up to 12 times a day, which had completely depleted her thiamine stores). My guess is that Wernicke's is very much less common in people without alcoholism or pregnancy sickness, though!

    I do hope you get some answers, it must be extremely frustrating as well as worrying.
     
    SeanQHX1 likes this.
  7. Mary

    Mary Moderator

    Messages:
    4,947
    Likes:
    10,374
    Southern California
    I did injections (self-administered) 3 x a week (5000 mcg.) for a few years and they did not seem to make any difference. I tried various sublingual tablets without effect (but I was always too impatient to let them dissolve slowly enough!), and then finally I tried a liquid sublingual methylcobalamin, and took it 2 x a day (5000 mcg. each dose) and finally felt a difference. I believe this was the form best absorbed by me.

    What I'm saying is the injections might not be enough, depending on the dose and how often you have them. They do bypass gut absorption problems, but sublinguals do that as well. And the injections have not shown to be more effective than sublingual. I think I would have needed daily injections to get enough B12 to make a difference.

    I think people with ME/CFS have all sorts of nutritional deficiencies and abnormalities that generally don't affect healthy people. I do have a brother-in-law who developed congestive heart failure after years and years of alcoholism; I recommended he take a thiamine supplement and it's helped his energy. Low thiamine has been implicated in CHF.

    But thiamine helped my energy noticeably as well, despite a very good diet and lots of B vitamins for years and years. I shouldn't need all the B12 I take, but I do. I shouldn't need all the supplements I have to take, but I do. Many people with ME/CFS have been helped by thiamine supplementation. So even though in a normal healthy population thiamine deficiency may be rare, I don't think it's necessarily rare with ME/CFS. I think taking thiamine would definitely be worth a try to see if helped @SeanQHX1.

    When I first took 100 mg. of thiamine, within a day or 2 I had a really nice burst of energy but this was followed by severe fatigue. It's a long story, I figured out that it had caused my phosphorous to tank (apparently related to refeeding syndrome), and when I drank a lot of kefir (high in phosphorous), that horrible fatigue went away. So I'm healthy-looking, apparently well-nourished female and should not have symptoms of refeeding syndrome, but I did. (It also happened with folate and potassium).

    I don't think the usual rules of nutrition apply to us.
     
    SeanQHX1, helios and Moof like this.
  8. Moof

    Moof Senior Member

    Messages:
    462
    Likes:
    1,122
    UK
    I agree, @Mary – we do tend to go in for counterintuitive (and sometimes frankly weird) deficiencies! :D

    That's the only thing I'd query, at least for some of us – I developed B12 malabsorption despite being on daily sublinguals, which is one of the reasons the diagnosis was missed for so long. I needed daily and then alternate-day injections for three months to get my levels up to normal. (I now do them about every seven to 10 days.)

    Different things work for different people...it's just another manifestation of ME madness. For instance, some people need methylcobalamin in order to function properly, as @Mary found, but I do absolutely fine on hydroxocobalamin injections; however, when it comes to the folate your body needs to enable the B12 to work properly, the methylated form keeps up my serum level much better than folic acid. Go figure! :rofl:
     
    SeanQHX1 and Mary like this.
  9. Hip

    Hip Senior Member

    Messages:
    11,206
    Likes:
    18,900
    I tried NSI-189 a couple of years ago, at 20 mg daily. This is touted to be an antidepressant, but I did not find it greatly improved mood, but may have mildly boosted mood.

    It did however have a noticeable anti-inflammatory effect, at least initially. I found my nasal/sinus congestion and inflammation was better, and it also reduced the inflammatory feeling in my brain. In addition, it had a calming anxiety effects, and reduced the "wired" feeling of ME/CFS a bit.

    I also found I would need less sleep while taking NSI-189: I normally need around 10 hours of sleep, but found I was often OK on just 8 hours while taking NSI-189. This may be due to the anti-inflammatory effects (I tend to find that when I have more of a feeling of brain inflammation in my head, I need more sleep).


    However, the anti-inflammatory benefits of NSI-189 seemed to diminish after a few weeks use, as if the body adapts to NSI-189. So perhaps NSI-189 might best be taken in short courses of up to a week, and then give it a break for a while.
     
    Mary, SeanQHX1 and Moof like this.
  10. Hip

    Hip Senior Member

    Messages:
    11,206
    Likes:
    18,900
    Out of the various nootropic drugs I tried, piracetam had the best effect in reducing brain fog. Unfortunately it also seems to worsen my emotional flattening. However, if I use a low dose it still helps with the brain fog, and the emotional side effects are not so significant.


    Have you been checked for increased intraocular pressure and glaucoma by an optician? Glaucoma can permanently damage peripheral vision, which is why regular eye intraocular checks to catch glaucoma early are a good idea.

    Interestingly, 3 out 30+ people who caught my ME/CFS-triggering virus (coxsackievirus B4) developed glaucoma around 5 years or so later.
     
    Mary, SeanQHX1, Moof and 1 other person like this.

See more popular forum discussions.

Share This Page