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Sleep success!

Dreambirdie

work in progress
Messages
5,569
Location
N. California
Update on the FWS. By the tenth day of using this gadget, just once a day in the afternoon, I began to have over-stimulation symptoms. I felt an increase in my pulse and a hyperactive feeling, which continued for several hours afterwards. Luckily, it didn't make my sleep worse, but it also did not improve it at all. I'm relieved that there were no long-lasting adverse effects. Once I stopped using the device, the increase in pulse and hyperactivity diminished by the next day.

This device, according to the marketing, is used for depression as well as insomnia. I don't have issues with depression. I'm a creative and enthusiastic person, with a tendency to get easily over-stimulated. Anything that boosts my mood and my enthusiasm beyond my already very adequate "normal" range, and pushes me into the hyperactive range, is guaranteed to fail as a remedy for me.

The FWS has earned an F grade, and has been returned.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Update on the FWS. By the tenth day of using this gadget, just once a day in the afternoon, I began to have over-stimulation symptoms. I felt an increase in my pulse and a hyperactive feeling, which continued for several hours afterwards. Luckily, it didn't make my sleep worse, but it also did not improve it at all. I'm relieved that there were no long-lasting adverse effects. Once I stopped using the device, the increase in pulse and hyperactivity diminished by the next day.

This device, according to the marketing, is used for depression as well as insomnia. I don't have issues with depression. I'm a creative and enthusiastic person, with a tendency to get easily over-stimulated. Anything that boosts my mood and my enthusiasm beyond my already very adequate "normal" range, and pushes me into the hyperactive range, is guaranteed to fail as a remedy for me.

The FWS has earned an F grade, and has been returned.

Sorry to hear this, Dreambirdie, and also feel wrong about 'liking' your message - really meant :cry: of course.

But it's very useful to know about adverse effects, so thanks for the warnings. Your self-description fits the character of a high proportion of us, I think.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Yet another thing that makes me feel like I live in "opposite land" -- caffeine has absolutely no effect on my sleep. In fact, drinking a cup of coffee in the evening can actually help my sleep. I'm so weird. o_O

I stumbled on this by accident. I was at some social occasion in the evening so I had some coffee and slept better that night. So then tested it to see if it was just a coincidence. Having a little caffeine seems to help my sleep. I'm guessing it's related to caffeine's vasoconstrictive properties? Of course, now I take midodrine during the day, which is a much more powerful vasoconstrictor! So I think anything caffeine did would be masked by the midodrine.

I too am not kept awake by coffee. I also tried cocaine 3 times when much younger, and it had no effect at all other than making me feel slightly jittery. My companions were really enjoying themselves! I believe that cocaine and caffeine act on the same receptors.
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
Sorry to hear this, Dreambirdie, and also feel wrong about 'liking' your message - really meant :cry: of course.

But it's very useful to know about adverse effects, so thanks for the warnings. Your self-description fits the character of a high proportion of us, I think.

Thanks. I feel you, MeSci. :hug: It would have been great to have had some positive results, but oh well :rolleyes: ...

I'm not sure how many people here are enthusiastically creative types. That would be an interesting poll. There's not a day that goes by where I am not working on a painting, a song or a story. I just finished several essays for a book I'm writing, and have a CD project on the back burner, which is next in line. Ideas for creative projects are always churning in my mind, and they give me a lot of joy. I love tapping into the stream of the creative flow and waiting to see what comes out next. It's always an adventure.

To balance the creative energies, I need quiet times in nature, along with sleep and rest. I wish I could find something that gave me the restorative sleep my brain is craving. That would be a dream come true. :angel:
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Thanks. I feel you, MeSci. :hug: It would have been great to have had some positive results, but oh well :rolleyes: ...

I'm not sure how many people here are enthusiastically creative types. That would be an interesting poll. There's not a day that goes by where I am not working on a painting, a song or a story. I just finished several essays for a book I'm writing, and have a CD project on the back burner, which is next in line. Ideas for creative projects are always churning in my mind, and they give me a lot of joy. I love tapping into the stream of the creative flow and waiting to see what comes out next. It's always an adventure.

To balance the creative energies, I need quiet times in nature, along with sleep and rest. I wish I could find something that gave me the restorative sleep my brain is craving. That would be a dream come true. :angel:

My enthusiasms are more about science, learning, problem-solving, etc., but I do have a wide range of interests and tend to get very enthusiastic. I also love being in natural surroundings.

My sleep is variable, but much better since starting the leaky-gut diet and supplements, and I do occasionally get a really good night's sleep and wake with a smile on my face and a spring in my step. I never stop hoping for further improvement...
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
My enthusiasms are more about science, learning, problem-solving, etc., but I do have a wide range of interests and tend to get very enthusiastic. I also love being in natural surroundings.

Enthusiasms are always a good thing, aren't they? I would feel totally DEAD without them.

My sleep is variable, but much better since starting the leaky-gut diet and supplements, and I do occasionally get a really good night's sleep and wake with a smile on my face and a spring in my step. I never stop hoping for further improvement...

That sounds promising to me. I just ordered the leaky gut test and look forward to seeing what the results will have to say.
 

maddietod

Senior Member
Messages
2,860
UGH! I'm sorry this was another fail for you.

I've just started testing sleep without the machine to see what happens. I've gotten only a few nights of better sleep in 6 weeks, and it's not the slow and steady improvement it looked like at first.
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
Darn! madietodd I thought it was working for you. It sounded promising. :(

What I see about my own sleep issues is that they are caused by either: toxins, allergens, and/or pathogens. If I can find the right remedies to clear each of the toxins or allergens when their symptoms manifest, and knock down the viruses, when they are activated, then my sleep improves. If I don't find the right remedies, then it doesn't.

When I'm really toxic, like I was from the fresh road tar about six weeks ago, then high doses of NAC (up to 3600 mg/day) are what helps me sleep. When the allergens nail me, then I need huge doses of isoquercitin.

The viruses are the worst to deal with, because when they flare, it's really challenging to find the right supps and herbal prescriptions to knock them back. (Those damn herpes viruses live in the nervous system and totally disrupt it!) It's during those times of viral activation that my sleep is the worst.
 

maddietod

Senior Member
Messages
2,860
I have given up on the fisher wallace stimulator, and am now trying LDN. I'll look into the circumin, thanks.

It's pretty wonderful to finally have a doctor who has ideas of his own, and is also completely open to trying mine. I feel a little like Edison with his 1000 experiments on the way to making a light bulb! I keep my focus on the fact that he did, in the end, get light.
 

Sparrowhawk

Senior Member
Messages
514
Location
West Coast USA
I have given up on the fisher wallace stimulator, and am now trying LDN. I'll look into the circumin, thanks.

It's pretty wonderful to finally have a doctor who has ideas of his own, and is also completely open to trying mine. I feel a little like Edison with his 1000 experiments on the way to making a light bulb! I keep my focus on the fact that he did, in the end, get light.

Do let us know how the LDN works for you. I joined the related Yahoo group and have been learning more about it. My one concern is that in some people it may mess with their cortisol. Most reports though that I see on that group are very favorable, for a wide range of issues.
 

maddietod

Senior Member
Messages
2,860
0.5mg LDN at 10pm last night........went fine. So at least it's not going to worsen my insomnia. I slept a little better, but that happens sometimes anyway.

A friend told me that you shouldn't take LDN if taking cortef. Maybe it inhibits its action?
 

Sparrowhawk

Senior Member
Messages
514
Location
West Coast USA
I don't know enough to comment on that, madietodd, but I had seen a couple of reports on the LDN yahoo group where folks who had cortisol issues found it lowered their cortisol.

(Of course in some cases that might be seen as a benefit!)

That's not something I want to toy with right now, though the possibility of LDN helping my gut is enormously appealing otherwise.
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
LDN gets very mixed reviews. Some people do well on it, some do horribly.

I tried ENHANSA (the curcumin product produced by Lee Silsby Phamacy) a couple years ago. It worked well for me for a while, to lower brain inflammation and relax the jangle brain. Then it stopped doing its magic. It is VERY expensive, and I am not sure it is that much better than the cheaper kinds.
 
Messages
2
I know this is an old post but is there any improvements with the fisher wallace stimulator?

No, I have the FWS. Confusing isn't it?

Dreambirdie, yes I had to make adjustments, and I'm still doing that. The Fisher Wallace people are very helpful by phone or by chat.

Everybody starts out at level 2. After 7 days I felt like maybe I was sleeping better. By day 10 I was sure, but I have a good night and then a few worse ones, so it's very non-linear. The steadiest improvement is that once I fall asleep, I stay asleep for up to 4 hours. Before, I'd fall asleep and then be up and down for an hour, and then I'd wake every hour or 2.

I started having trouble falling asleep, and they told me to use it an hour before bed. That immediately solved that problem. They said to also lower the level to 1, but at 1, nothing happened at all.

Then I figured it was time to tell them it's working in a very spotty way. They said to go to level 3 for a week, and then 4 if 3 doesn't make any differences. I'm only 2 days into that shift and have nothing to report yet.

If you're thinking about buying this machine, notice that you'll need more sponges after the 2 month trial period. That will cost $60 for 48. The sponges are extra dense, so they hold a lot of water and conduct the electricity better than anything I've tested.
 

Stretched

Senior Member
Messages
705
Location
U.S. Atlanta
I’ve got insomnia to beat the band. Alternate benzos and others which gives some relief but not adequate. How did you come across such a zapper with credulity? It almost seems like an analog for iffy magnetic fields? I’m afraid my tongue might pop out of my ear=&
 

humanrising

Senior Member
Messages
155
Glad it's working, but jolting our delicate brains with electricity might not be the best way to go for most of us. Neurofeedback can probably provide the same benefits for many CFSers by adjusting what's out of whack without electroshocking our delicate neurologies with blasts of indiscriminate voltage/frequency. I've greatly improved my sleep over the last year or two with EEG NF from total 100% insomnia and requiring benzos, trazodone, the occasional seroquel, etc., to being able to sleep 8-10 hrs. with only 5-10mg melatonin. If I get stressed or have too much social interaction before bed and throw off my sleep cycle I sometimes have to "reset" myself with 0.125mg of benzo, some diphen, etc., but NF for the most part has fixed the worst of the insomnia. Hope I won't get jinxed now, lol.

Btw, just to add to that, I tried CES/Alpha-stim a few years ago. It actually sent my anxiety through the roof and *caused* insomnia. Why? Because I now know through NF assessment that I don't need alpha everywhere in my brain, only on the right side and in the occipital/parietal regions. Global alpha increase just exacerbated existing brainwave dysregulation. It's great to hear when something like the Fisher Wallace works for someone - I've definitely been curious to try it out myself, although still more than a little apprehensive - but for anyone who tries it, or alpha-stim/CES, etc. and doesn't get good results, it could just mean that's it's too much of a "shotgun" kind of approach and you need something gentler, like NF.

curious how you started with doing the neurofeedback? did you see someone who treated you?
I tired the LENS protocol with LENS since he lives in my town. I tried it 3 or 4 times and wasn't getting much out of it and I couldn't really afford it. Him and his wife are lovely people.
I was also trying to do a ton of supplements and herbs for lyme disease and thought maybe I was just doing too much.
I didn't know you could do this on your own at home....this is what you are doing right? my insomnia is so severe I am going nuts so maybe its worth trying again but only if I can do it on my own. which doesn't seem easy since you have to have such perfect placement.
I think after talking to them about how even doing the first mappings can cause sensitive people problems I would be hesitant to try anything stronger.