The Awakening - Bedbound to Housebound (1 Day a week)

[dreamydays]

My apologies for not posting in the last year or so, It's been challening.

Anyway I have found a protocol which returns many of my functioning for one day a week.

My protocol
Sleep for 5 hours (ish)
I then take Pregabalin (300-600mg)
Agmatine (500-1000mg)
Sleep for 2 hours (ish)

Upon wakening
Modafinil (100-600mg)
Piracetam (2-8g)

Some things I have the option of taking for an extra boost

Benzodiazipines
Clonazepam (0.5-2mg), this is more euphoric/stimulating
Lorazepam (1-4mg), this is more calming/focusing
Zolpidem (10-20mg) 3 x daily this is a better balance

NMN
This is a niacin based supplement which boosts NAD+ levels
250-1000mg (I take DoNotAge or Alive by nature brands as they ave independent COAs)

Ivabradine
2.5-5mg

I take this for POTS and it keeps my heart rate under control, I think its the best treatment for my POTS. None of the others have worked for me, I also don't get any side effects. I take it most days.

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As some of you know my Fiancé also has ME, she is housebound but this makes her a lot stronger and we get all our jobs done, which is a never ending task as you know, this works really well for her too. This study therefore is (n=2)

Unfortunately due to drug tolerance we can do this only once a week, the pregabalin is the key, the tolerance is a bitch for this! We don't take it any other days. The agmatine is a great stabiliser and helps prevents tolerance to the protocol.

i can talk to friends, use my laptop get jobs done and physically move around the house which is like getting my life back temporally.

Disclaimer: This works for us, getting the right levels of medication is key, I can't say how this would affect others and I am not recommending this as I am not a doctor just a patient and researcher, my dosage has to adapt to any tolerance and I have had to take breaks for a few weeks sometimes to not let my body/ME to adapt and stop this regime from working.

I was already experimenting with some of these medications and was prescribed Pregabalin for daily use, which I had to stop and give my body time to withdraw from and learn that the benefits of intermittent use at a high dose worked. I wake up with a bit of a 'buzz' from the Pregabalin, all these medications can be misused and I found it took time to balance the dosage. My body deals well with medication in general, If someone was sensitive to medication then they would have to tread very carefully with such a protocol.

 

[parth88]

Stability of the product seems to be a big issue with NMN. How long are you taking NMN. Do you recommend Alive BY Nature?

 

[Rufous McKinney]

As some of you know my Fiancé also has ME, she is housebound but this makes her a lot stronger and we get all our jobs done, which is a never ending task as you know, this works really well for her too. This study therefore is (n=2)

Can I ask a slightly personal question? Just curious How you two met? Was this just a co-incidence the you both have ME?

N=2- at least sounds like you can really work together on solutions and support, so congratulations!

 

[dreamydays]

With regards to NMN, I have tried a few brands. The best by far is DoNotAge (Discount code MYNMN 10% off), but I am in the UK so no import tax etc. Alive by Nature are also very good, but mainly sell 125mg sublinguals. These were great for building up to the full dose but they are bad for your teeth and taking 8 a day is a pain! capsules work just as well. I have heard good things about Prohealth too.
Make sure you also take resveratrol 1g in fish oil or yoghurt and its very fat soluble and hard to absorb, but it activates all the longevity genes you need but relies on NAD to work. Watch any video of David Sinclair on Youtube.

The NMN gives you energy on its own, but as with everything you get used to it over time, the resveratrol turns on longevity genes, keeps us fighting a bit longer!

 

[dreamydays]

Can I ask a slightly personal question? Just curious How you two met? Was this just a co-incidence the you both have ME?

N=2- at least sounds like you can really work together on solutions and support, so congratulations!

No, we have been together 13 years, both in good health with busy jobs. 5 years ago I went away for a 80 hour work week with my friend. After the last meeting I started to feel very odd. I bought a kebab and went back to my B&B. When I woke up i felt very very strange and sicker every hour. My friend drove me home and I was feeling terrible, like the worst flu you could ever have. I sent Mrs dreamydays away from the house and self isolated (so ahead of my time lol). I followed the guidelines for how long flu is contagious and eventually I was feeling a better and not blowing my nose or coughing/sneezing. Mrs dreamydays came back but despite all my precautions within a few days she had it as well. I recovered 90% and went back to work for a few months and felt pretty normal some days, but it was. always catching up with me until after somehow being best man for my best friends wedding and driving back. I was always getting PEM, until I finally couldn't get out of the house. Its just been a fight since then. Mrs dreamydays never recovered like me, she just struggled always. But I am the one who is now worse than her!

 

[mitoMAN]

Did you try NAD+ or NADH injections instead of NMN?

also 600mg of Modafinil is pretty HUGE.
i remember once slowly going up to 800mg and I thought my brain would melt.

are you sure modafinil isn't one of the driving forces but like almost stimulants will burn out your energy in the long run?

 

[dreamydays]

I haven't tried the injections, but all the latest research seems to suggest the NMN works and boosts NAD+ I can tell you that you can feel it while I titrated up to 1g a day, but then you get used to it. But I am trying to follow a longevity protocol, especially when the NMN is helpful for my ME. I generally only take 400mg of modafinil, I don't find it stimulating in the traditional sense, just gives me focus and stamina for mental tasks. I wish I had it when I was well, its the perfect balance of mental stamina, concentration but no physical need to do things. I tried Ritalin once and it was horrible, I wouldn't even touch Adderall with a barge pole. Those kind of stimulants are a disaster, they will rev you up, crash you and leave you with insomnia. Then again there will be some people who find them helpful at very very small doses.

 

[lateM98]

I found out that 3 to 5 grams of N-Acetyl-DL-Leucine helps me get up and move around as if I didn't have ME/CFS. It only works for few days a week and it doesn't restore any of my cognitive prowess, but it helps me take a shower and even go out despite feeling like a marionette. It has a strong appetite suppressant effect. Calcium and copper supplementation seems to help while zinc makes me feel a lot worse.
The N-Acetyl-DL-Leucine effect is very strong and nothing like I ever tried before. Maybe more people should try this. I may create a new thread for it.
Reading your pose got me thinking what if I combined N-Acetyl-DL-Leucine with Gabapentin.
N-Acetyl-DL-Leucine is not a supplement, but can be found as a drug for cheap in most of Europe. There is a company working on bringing N-Acetyl-L-Leucine (supposedly the active moiety) to U.S for various conditions ranging from restless leg syndrome to metabolic syndrome.

 

[dreamydays]

Very interesting my friend. I will look at this and see if I can try it. I don't know the laws where you live, but Pregabalin is much more potent than Gabapentin. Gabapentin is still helpful but you may find if you try and use it once a week that you need 800mg-1g, which would be described as a recreational dose essentially. Once you go past a gram, your body wont absorb it.

Modafinil, is best for the cognitive issues, and you can take it every third day but it last 12 hours so watch out for insomnia. Its widely used as a study drug, I suspect most world leaders take it as its great for a long day of focusing.

Also agmatine is great for preventing tolerance to these and many other medications. PM me if you need more information. I will spend my last hour looking at your treatment. I think it's worth its own thread. We need to keep the forum ticking over!

 

[Abrin]

I generally only take 400mg of modafinil, I don't find it stimulating in the traditional sense, just gives me focus and stamina for mental tasks.

I feel the same way about modafinil.

 

[junkcrap50]

What were your benefits from Pregabalin? My doctor wants to put me on it, for muscle pains and tightness that started from methylation supplements. I haven't read about it yet. I've tried gabapentin and it did nothing.

 

[Rufous McKinney]

I feel the same way about modafinil.

Gee, I tried 50 mg modafinil....this generated a bit of feeling more mentally alert and an immediate head ache. It felt rather odd most of the afternoon. At some point, I had the thought: clean kitchen floor. But instead of just thinking that thought, I dropped to the floor and started scrubbing it right away.

I promised my doctor I'd try it again. Yet I never seem to want to feel- more alert with ME. Feeling more alert, and maybe thats not even the right term- I'd rather be vague and zombie like...than more alert to feeling unwell.

So I"m still in shock over the dosages discussed here!

 

[mitoMAN]

800mg modafinil caused a feeling of my brain melting. 200-400mg was without any sides

 

[Abrin]

So I"m still in shock over the dosages discussed here!

You have to remember that I've been taking modafinil for over a decade now so I've built up a tolerance.

 

[Treeman]

I have found a protocol which returns many of my functioning for one day a week.

My protocol
Sleep for 5 hours (ish)
I then take Pregabalin (300-600mg)
Agmatine (500-1000mg)
Sleep for 2 hours (ish)

Upon wakening
Modafinil (100-600mg)
Piracetam (2-8g)

I'm guessing your quite severe, do you know if anyone whose less effected has tried this with a similar reducing of symptoms and a significant lifting of health? Thanks.