ADHD drugs reduce ME/CFS cognitive dysfunction

[peggy-sue]

I've had (mild?) ADHD all my life - long before it became a medicalised condition.
And, like everybody else who had it before it was medicalised, I self-treat with caffeiene and nicotine.
I've just converted to electric cigarettes - so I can even get my nicotine safely now .
I wouldn't touch new (p)harmaceutical stimulants with a bargepole.

 

[searcher]

PhoenixBurger - I hadn't heard about the links with Parkinson's before, so thanks for the reference. I found some recent retrospective epidemiological research that showed a 60% increase in frequent amphetamine users, but didn't find any showing 50x increase. It's hard to know cause and effect in this case-- are people who are already having dopamine receptor problems more likely to use amphetamines or are the amphetamines themselves causing the later problems? I am going to research some animal models since I am using them at a low-dose on some days. Ecstacy has actually been found to help Parkinson's, which adds a different wrinkle.

 

[vli]

PhoenixBurger I am going to research some animal models since I am using them at a low-dose on some days.

I don't know how on earth you Americans manage to get these drugs from ur doctor. I spent most of my life in England and we wld NEVER, ever succeed in getting any drugs in this group fr our docs, even if specialist.

 

[Sushi]

I don't know how on earth you Americans manage to get these drugs from ur doctor. I spent most of my life in England and we wld NEVER, ever succeed in getting any drugs in this group fr our docs, even if specialist.

For me, the key was going to an autonomic specialist.

The one I went to had POTS himself and only saw patients with dysautonomia. He knew from research as well as experience which drugs had the potential to help symptoms. There are international conferences for autonomic specialists every year and, of course, use of all potential drug therapies are discussed at length.

Sushi

 

[PhoenixBurger]

We are a pill popping culture.

 

[Sushi]

We are a pill popping culture.

Yep!

While I found that, for me, some of these meds reduced or controlled symptoms, after a couple of years I decided to "go for causes." (My symptoms were better then) But for those disabled by conditions like OI and POTS, symptom control makes a big difference.

Sushi

 

[Valentijn]

While I found that, for me, some of these meds reduced or controlled symptoms, after a couple of years I decided to "go for causes." (My symptoms were better then) But for those disabled by conditions like OI and POTS, symptom control makes a big difference.

Tackling symptoms resulting in inability to think clearly does make a big difference when patients often have to act as their own doctors, advocates, and scientific researchers

I got on Strattera by discussing it with a fully licensed naturopathic doctor who has an interest in managing complex and chronic illnesses ... yes, those sorts of doctors actually exist!

 

[Sushi]

Tackling symptoms resulting in inability to think clearly does make a big difference when patients often have to act as their own doctors, advocates, and scientific researchers

I got on Strattera by discussing it with a fully licensed naturopathic doctor who has an interest in managing complex and chronic illnesses ... yes, those sorts of doctors actually exist!

And of all the drugs I've taken, Strattera helped the most!

Sushi

 

[HowToEscape?]

And of all the drugs I've taken, Strattera helped the most!

Sushi

Any other comments on Strattera? I've never heard of it (it seems like 85% of the supplements/scrips are substances I know nothing about). How does it differ from Adderall?

 

[Sushi]

Any other comments on Strattera? I've never heard of it (it seems like 85% of the supplements/scrips are substances I know nothing about). How does it differ from Adderall?

It is a norepinephrine reuptake inhibitor--very different from Adderall which is an amphetamine.

​

Here is Valentijn"s thread on strattera: http://forums.phoenixrising.me/index.php?threads/strattera-atomoxetine.19755/page-3#post-313284

Sushi

 

[CallieAndToby]

I've had very dangerous reactions to stimulants. They make me crash soon after taking them, I experience the worse sleepiness and fatigue ever in my life, but they make my heart rate go up to 180 bpm. I do not know why this happens, but it happens with something as simple as b vitamins or caffeine. Provigil was the worst and adderrall was downright frightening. I tried these before I was sick and felt great, this was after getting CFS. Doctors look at me like I'm crazy, does anybody know why they do this to me/why I have this reaction? The few times I tried provigil, I felt exactly the same for an hour then I crashed so badly I would literally fall out of the chair I was sitting in and barely crawl to a bed.

Yea they aren't safe at all for CFS. I've heard that some people may be helped for a short time then they crash REALLY badly. B/c the root problems aren't being addressed, you're just revving up.

 

[Valentijn]

I've had very dangerous reactions to stimulants. They make me crash soon after taking them, I experience the worse sleepiness and fatigue ever in my life, but they make my heart rate go up to 180 bpm. I do not know why this happens, but it happens with something as simple as b vitamins or caffeine. Provigil was the worst and adderrall was downright frightening. I tried these before I was sick and felt great, this was after getting CFS. Doctors look at me like I'm crazy, does anybody know why they do this to me/why I have this reaction?

It sounds like Provigil (Modafinil) stimulates release of neurotransmitters, which might not be a good thing if your levels of them are not adequate.

Reuptake inhibitors, on the other hand, prevent the targeted neurotransmitter from being removed from neuron synapses and broken down, so it's easier for a signal to get sent between neurons. This might be more helpful if overall levels of the neurotransmitter are low.

 

[CallieAndToby]

It sounds like Provigil (Modafinil) stimulates release of neurotransmitters, which might not be a good thing if your levels of them are not adequate.

Reuptake inhibitors, on the other hand, prevent the targeted neurotransmitter from being removed from neuron synapses and broken down, so it's easier for a signal to get sent between neurons. This might be more helpful if overall levels of the neurotransmitter are low.

Yea probably right, I have terrible terrible depression and anxiety.

I am on zoloft, zyprexa, and klonopin. And have tried a bazillion others. The most helpful was MAOI (emsam) and nortriptyline but only helped so slightly. I would have liked to stay on emsam but it reacted with everything else I needed to try.

This theory makes sense though. Thanks.

 

[penny]

I've heard that some people may be helped for a short time then they crash REALLY badly. B/c the root problems aren't being addressed, you're just revving up.

I find that low, irregular doses of stimulants can be helpful for me (especially for cognitive dysfunction) and even that I get a little residual improvement the next day. Hmmm, I wonder if this next day effect is related to blood pressure increase/improvement in OI.

This seems to work for me if I have a little something 'in my tank' already - they don't help if I'm completely crashed. Just my personal experience. Anyway, in this scenario I don't get a crash from rx stimulants. Just one anecdote.

 

[Sushi]

I find that low, irregular doses of stimulants can be helpful for me (especially for cognitive dysfunction) and even that I get a little residual improvement the next day. Hmmm, I wonder if this next day effect is related to blood pressure increase/improvement in OI.

This seems to work for me if I have a little something 'in my tank' already - they don't help if I'm completely crashed. Just my personal experience. Anyway, in this scenario I don't get a crash from rx stimulants. Just one anecdote.

There can also be increased blood flow to important parts of the brain. My autonomic doctor used to prescribe very low doses of amphetamines for this reason--I mean absolutely tiny doses. They also seemed to bring me up to more normal cognitive levels at these tiny doses.

Sushi

 

[penny]

There can also be increased blood flow to important parts of the brain. My autonomic doctor used to prescribe very low doses of amphetamines for this reason--I mean absolutely tiny doses. They also seemed to bring me up to more normal cognitive levels at these tiny doses.

Sushi

Interesting! So do you think the increased blood flow helps compensate for a decreased blood flow caused by OI? Also, do you remember what the dosages/med combo's were by any chance? I'm wondering what really is a low dose (since the dosages available online are for different illnesses).

 

[Sushi]

Interesting! So do you think the increased blood flow helps compensate for a decreased blood flow caused by OI? Also, do you remember what the dosages/med combo's were by any chance? I'm wondering what really is a low dose (since the dosages available online are for different illnesses).

Yes, I think it helps compensate for decreased blood flow and blood volume.

My doctor prescribed different doses for different patients--usually Adderall as it is 4 different amphetamine salts with different half lives. For me, 1 - 2 mgs makes a big difference--that means cutting the tablet. I do not take this regularly, only very occasionally when I really need more of my brain!

Sushi

 

[adreno]

I am not sure this theory is correct...stimulant drugs normally reduce the cerebral blood flow by vasoconstriction. Piracetam, vincopetine, resveratrol, forskolin, carnosine and pentoxifylline can probably increase CBF.

 

[Sushi]

I am not sure this theory is correct...stimulant drugs normally reduce the cerebral blood flow by vasoconstriction. Piracetam, vincopetine, resveratrol, forskolin, carnosine and pentoxifylline can probably increase CBF.

My doc said that , according to what he had learned at conferences on dysautonomia, adderall would increase the blood flow to the reticular activating center--that is all I know!

Sushi

 

[barbc56]

It sounds like Provigil (Modafinil) stimulates release of neurotransmitters, which might not be a good thing if your levels of them are not adequate.

Reuptake inhibitors, on the other hand, prevent the targeted neurotransmitter from being removed from neuron synapses and broken down, so it's easier for a signal to get sent between neurons. This might be more helpful if overall levels of the neurotransmitter are low.

I take Nuvigil which is the newer form of Provigil, supposedly Nuvigil is the same as Provigil minus an atom that is associated with side effects. Both have been effective, It gives me about 70-80% for about six hours. I never feel overstimulated as I might if I drink too much caffeine. It makes me feel closer to "normal" than I usually do and don't get a rush or high from it. No side effects except occasionally a mild headache when I first started on the medication.

It's not exactly a stimulant as it goes to the part of the brain that improves alertness/sleepiness. I find I can concentrate better. Surprisingly, it also helps with the pain. My doctor said this is because like an ADD medication is tones down the extraneous firing of the nervous system which causes pain for a lot of us.

Keep in mind that this is my experience and others might have different reactions.

Barb C.