Can't get it.
Mental health: Is ME/CFS Brain Fog consistent with an Attention Deficit Disorder?
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Learner1
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I thought you were in Australia, where it is available from compounding pharmacies, just as it is in the US.
Curcumin and boswellia are also helpful in reducing microglial activation.
https://jneuroinflammation.biomedcentral.com/articles/10.1186/1742-2094-8-125
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6864549/
Learner1
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Compounding pharmacy?
Learner1
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I've been on LDN for 5 years. I actually have never noticed anything extremely positive or negative, but my doctors want me to stay on it. I recently spotted a very interesting non-ME/CFS article on brain inflammation and sent it to my ME/CFS specialist and he responded that LDN is helpful in reducing it. I don't have ADHD, but do experience brain inflammation from my IVIG treatment, fir which the curcumin and boswellia mentioned above are helpful, in addition to the LDN.
pattismith
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Did you get any ADHD treatment before ME or after ME?
pattismith
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on the other hand, by refusing the trial, you loose the opportunity to check is this drug may have any positive effect on your symptoms (ME symptoms or ADHD symptoms). This may give you useful informations.
xebex
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I am not diagnosed with ADHD but I probably have it on the milder end of the spectrum. For me brain fog is a feeling of being poisoned, sick and ill something is physically affecting my brain cells. My adhd symptoms are just part of my personality/neurology they don’t coincide with any negative feeling of being ill.
I can get hyper sometimes and find myself literally spinning in circles or I will pace between rooms several times before knowing what I was supposed to be doing. My legs jiggle and I can’t stop talking. Sometimes I find myself reading the same paragraph over and over because the information won’t go into my brain (I like to call this menu-itis as it’s worst when out with friends (when I could go out) and trying to order food. I can say inappropriate things to people because stupid thoughts just blurt out (compusiveity).
When I was a kid I simply couldn not absorb mathematical concepts even though I was top of the class elsewhere. I would constantly be in detention for disrupting the lessons or speaking out of turn or talking back to the teacher - yet I never got in proper trouble because my grades were somehow always good (except for maths) None of these things are or ever were accompanied by the foggy underwater feeling I get when brainfogged due to the ME.
However I do believe that those of us with adhd potentially have a neurological make up that makes us more susceptible to developing ME and it seems that many many people with ME also have adhd or autism and my adhd /neurodivergenve has got more obvious since getting ME.
I can get hyper sometimes and find myself literally spinning in circles or I will pace between rooms several times before knowing what I was supposed to be doing. My legs jiggle and I can’t stop talking. Sometimes I find myself reading the same paragraph over and over because the information won’t go into my brain (I like to call this menu-itis as it’s worst when out with friends (when I could go out) and trying to order food. I can say inappropriate things to people because stupid thoughts just blurt out (compusiveity).
When I was a kid I simply couldn not absorb mathematical concepts even though I was top of the class elsewhere. I would constantly be in detention for disrupting the lessons or speaking out of turn or talking back to the teacher - yet I never got in proper trouble because my grades were somehow always good (except for maths) None of these things are or ever were accompanied by the foggy underwater feeling I get when brainfogged due to the ME.
However I do believe that those of us with adhd potentially have a neurological make up that makes us more susceptible to developing ME and it seems that many many people with ME also have adhd or autism and my adhd /neurodivergenve has got more obvious since getting ME.
In some ways I'm glad there wasn't all the info about ADHD then as there is today. So many things to look into.
I strongly encourage parents to have private testing done, as it can also detect learning problems that may be minor. (Ask in advance about what's being shown in the testing.) Extra tutoring will help them. I suspect that is true of a grandson in CA but his parents wouldn't have him tested and one can only suggest but not control.
With the climate children are facing today, a parent should be very worried....but remember, they learn the most from you, their habits, etc. It can be a wonderfully rewarding, but serious job. Yours, Lenora.
I strongly encourage parents to have private testing done, as it can also detect learning problems that may be minor. (Ask in advance about what's being shown in the testing.) Extra tutoring will help them. I suspect that is true of a grandson in CA but his parents wouldn't have him tested and one can only suggest but not control.
With the climate children are facing today, a parent should be very worried....but remember, they learn the most from you, their habits, etc. It can be a wonderfully rewarding, but serious job. Yours, Lenora.
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Not worth having Amphetamine brain.
I know many people who have cyled the neuroleptics, they are bad news.
The one thing meds can do is give children a real chance.
But I've known many who have fallen between the cracks and could have been saved with the proper medication. Some are now in college and while they do have their problems, are actually doing OK.
If there was a choice between meds and my child growing up without an education, I'd definitely choose the first choice. Ritalin had just been developed when our girl was in high-school; it wasn't a good experience for her b/c of the high doses (again. We've been faced with this many times). But bear in mind that even the medical field is in a learning mode...always will be. You'll never have a guarantee...sadly. Yours, Lenora.
But I've known many who have fallen between the cracks and could have been saved with the proper medication. Some are now in college and while they do have their problems, are actually doing OK.
If there was a choice between meds and my child growing up without an education, I'd definitely choose the first choice. Ritalin had just been developed when our girl was in high-school; it wasn't a good experience for her b/c of the high doses (again. We've been faced with this many times). But bear in mind that even the medical field is in a learning mode...always will be. You'll never have a guarantee...sadly. Yours, Lenora.
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Permanent brain damage.
From addiction to altered thought processes and more. Paranoia and aggression are rather common if the dose was too high. In some permanent psychosis is the result, in others a kind of behavioural stunting, in some a kind of autism or cognitive regression. Some are never the same psychologically or mentally.
I know people who are not technically addicted but cannot function the same ever again and need combinations of the drugs to get back some of the cognition they had before they went down the neuroleptic rabbit hole.
And the withdrawal, sometimes even if people spend years and do get off the drugs they are not the same person they were before they started. Sometimes they need the same or anther drug to get some stability back becasue their brain is messed up permanently. And the doses, those who were on very high doses or combinations of drugs have frankly played cognitive Russian roulette.
Rufous McKinney
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just earlier today, I took an online short survey (37 questions) dealing with ME and our symptoms and it was rather fascinating to simply watch myself cognitively having greater and greater difficulties answering the fairly simple questions.
Then; the survey more or less asks the same questions a second time. I realized I was losing it even more. I got increasingly perplexed, the longer I tried to think about my answer.
So this is a huge issue with us in my opinion. Thinking more and harder- only makes it worse.
I suspect my answers the first round were very different form round two. Therefore, sort of worthless.
It seems a bunch of others had similar difficulties. So just noticing that left me more shocked.
Then, my ability to Pay Attention to the actual question at hand, got increasingly difficult.
Rufous McKinney
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you still need an RX to get it from compounding.....
they don't make a low dose pill and dont 'make the 3.5 mg I use, therefore, its not covered by my insurer.
Learner1
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It can be appealed.
pattismith
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Rufous McKinney
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I never went thru that process...but I could still try.
I did bother them via some other means and the story there was this nice helpful woman called from my insurer, and she ends up suggesting I ask my doctor for this different RX. It contains low dose LDN. It also contains MORPHINE. (the LDN is in there to prevent overdosing)
We pay for this woman's salary, to not deliver services.
They turned down the Provigil, too. I bought it myself, then never took the other nine and a half pills I own.