Amphetamine is an instant, but short lasting, cure

[MeSci]

I suppose I am upset that I was mocked for not having enough restraint to control my benzodiazepine usage.

If someone did that, it is totally unacceptable. Different people have different susceptibilities to addiction and to different drugs. I've taken a wide range of drugs, legal and illegal, and got on fine with some that I know would be unsuitable for some people. I was OK with benzos but recognise that they can be extremely addictive for some. Conversely there are some drugs that affect me very badly that others can cope with.

But the fact remains is that amphetamines drain the body's resources, which are already depleted in ME and very hard to replenish. We are constantly 'running on empty' and amphetamines will leave us even emptier.

 

[MeSci]

They make me pee like a fish too.

That's a common effect, and IMO further contraindicates them for us, as we tend to be dehydrated already.

 

[taniaaust1]

May help orthostatic intolerance with those that have low blood pressure issues.

Ah thanks, that is interesting.

 

[svetoslav80]

Definitely don't take amphetamines. I've walked that road and made my situation worse.

 

[Hip]

I think this is a completely irresponsible recommendation.

I don't think the recommendation of stimulant drugs for ME/CFS is irresponsible, provided they are taken judiciously: stimulant drugs are used by a number of ME/CFS doctors, as the article here indicates:

Dr. Lapp and Dr.Teitelbaum appear to have had considerable success with these drugs. Dr.Teitelbaum states stimulants ‘can be very helpful for many people with CFIDS’. He believes that Dexedrine and Ritalin are underused in ME/CFS. Stimulants such as methylphenidate (Ritalin), dexamphetamine (Dexedrine or Adderall), and modafinil (Provigil) are Dr. Lapp’s first choice in this area.

Dr. Pocinki notes “For patients who are complaining of fatigue or cognitive dysfunction, stimulants like Provigil, Ritalin or Adderall may be prescribed to boost energy and improve focus and concentration… However, you can’t prescribe stimulants without keeping a careful eye on how they impact other aspects of the illness. They can make rest and sleep more difficult, or worse, they can precipitate the dreaded push-crash cycle.”

And here is says that:

Dr. Teitelbaum believes Ritalin is underused in ME/CFS. Dr. Bateman uses both Ritalin and Adderall but in general prefers Adderall. Ritalin can exacerbate sleep problems in some patients. The IACFS/ME Treatment Primer states anecdotal reports suggest that Ritalin can have moderate to marked benefits but that tolerance can develop if used daily.

Ritalin has been shown to be effective in a very wide variety of doses in ADHD and the recommended dose range is wide in ME/CFS as well. The IACFS/ME Treatment Primer and Dr. Bateman recommend 5-20 mgs. taken 2-3x’s a day. Dr. Teitelbaum recommends 10-30 mgs. taken 3x’s a day for sixty days max. Dr. Rowe. – who treats pediatric patients – recommends low doses in the beginning (5 mg in morning) repeated, if necessary, 4 hours later for orthostatic intolerance. The dose can be doubled in the afternoon or it can be given twice (5 mg/5mg) in the afternoon.

There is also some info here about how Dr John Kaiser is sometimes using small amounts (10 to 20 mg per day) of Ritalin (methylphenidate) in his studies on ME/CFS patients. Methylphenidate (Ritalin) stimulates mitochondrial complexes II and IV.

Though certainly I agree some caution would be advised when using stimulants, especially because of the tolerance-withdrwawl problems of stimulants.

I am afraid it only throws a cover on fatigue - fatigue is still there but you don´t feel it anymore.

That may not necessarily be the case that stimulants only cover over the fatigue; they may genuinely reduce it: if you subscribe to the theory that the fatigue and cognitive symptoms of ME/CFS are due to excess extracellular glutamate in the brain (as @Marco has postulated in this article), then raising dopamine levels, as stimulant drugs do, can act to counter some of the effects of high glutamate (see here), and so it is conceivable that stimulant drugs might actually reduce fatigue at its supposed glutamatergic roots, rather than just masking the fatigue.

Of course, the problem with treating fatigue with stimulants is the tolerance build up. Indeed, this study shows that in long term amphetamine use, dopamine D2 receptor populations are reduced, meaning that although amphetamines boost dopamine receptor activation, in long term usage you get less dopamine system activation, because your dopamine receptor populations are reduced by this drug.

I believe it is this loss of dopamine receptors that underpins the tolerance build up to amphetamines. Presumably when you take a break from these drugs, your dopamine receptor populations increase again, meaning that the tolerance disappears.



In my case, I find that the dopamine D2 and D3 receptor stimulating drug amisulpride (in very low doses) usefully reduces my fatigue levels, and helps with the sound sensitivity of ME/CFS. The advantage of very low dose amisulpride is that although it stimulates the dopamine system, it has much less of a tolerance problem than amphetamines. I have used this drug every day for several years now, with no loss of effect, and never any withdrawal symptoms if I stop taking it for a while.

 

[misskatniss]

@Hip hmmm that sounds interesting, but as neuroleptics are also Dopa-level-raising and I reacted very badly on them, I am not so sure whether that might work for me... but glad for anyone where it does...

 

[Hip]

@misskatniss
Which neuroleptic did you try? So far I have tried two: very low dose amisulpride and Abilify (aripiprazole). The latter made me feel a little wired and over-stimulated, but amisulpride I found nicely calming.

I keep meaning to try the neuroleptic risperidone (Risperdal). I have read some reports like this one of people pretty much recovering from ME/CFS using 0.5 mg a day of risperidone.

Though risperidone actually antagonizes dopamine D2 receptors, whereas very low dose amisulpride agonizes D2 receptors (though if you take amisulpride in higher doses, it then antagonizes D2 receptors; so amisulpride is in effect a different drug at very low doses compared to standard doses).

 

[DeGenesis]

@misskatniss
Which neuroleptic did you try? So far I have tried two: very low dose amisulpride and Abilify (aripiprazole). The latter made me feel a little wired and over-stimulated, but amisulpride I found nicely calming.

I keep meaning to try the neuroleptic risperidone (Risperdal). I have read some reports like this one of people pretty much recovering from ME/CFS using 0.5 mg a day of risperidone.

Though risperidone actually antagonizes dopamine D2 receptors, whereas very low dose amisulpride agonizes D2 receptors (though if you take amisulpride in higher doses, it then antagonizes D2 receptors; so amisulpride is in effect a different drug at very low doses compared to standard doses).

All these three drugs are second-generation, atypical antipsychotics, which have less side effects that the first generation.

The CATIE trials found that newer neuroleptics were no more effective and had little to no more side-effects than the older typical neuroleptic perphenazine.

http://www.ncbi.nlm.nih.gov/pubmed/16172203

The problem is that, in their studies, big pharma always compares their new neuroleptic with haloperidol. Haloperidol is in the high-potency class of typical antipsychotics and basically gives everyone intense EPS.

Back to risperidone.

I read a study hypothesized that risperidone at 0.25 mg (not far from the 0.5 mg you mentioned) would be a relatively selective 5-HT2A antagonist. Check out that binding affinity!

http://www.ncbi.nlm.nih.gov/pubmed/21189367
http://www.biomedcentral.com/1471-244X/9/25

EDIT: Both studies achieved results at 0.25 mg, but neither mentions selectivity for 5-HT2A at that dose, so I can not make that claim. I will look further.

Risperidone is also a potent alpha-2 antagonist.

http://www.ncbi.nlm.nih.gov/pubmed/9194049

@Hip , would any neuroleptic at very low doses agonize D2 receptors, or is this a quality special to amisulpride? Thanks!

EDIT: This is my own personal internet armchair research and not to be taken as medical advice about neuroleptics!

 

[misskatniss]

@Hip Sorry to tell you this, and we are all different - but I myself will NEVER take Risperdal again. They pushed me on zero time to 4mgs a day, and I sufered from total emotional numbness, restless legs and the urge to move and walk and stay in movement all day long (causing me crashes), couldn´t pee properly as bladder muscles were tightened, hypersomnia in the beginning, amenorrhea (ok you don´t risk that ^^), and my breats lost milk!!! They only changed medication after six weeks, first they told me I was projecting my psychotic experiences on the drug devil and admitted that I had severe side effects only when that damned milk was visible even through my clothes. They immediately gave me Zeldox (Zolperidone) instead with the other stuff still circulating in my blood, and like that the restless legs and forced movement increased even more, plus the emotional numbness, it was horrible that day, I couldn´t sit or lie still for a sec, it is like torture.

Ok, for another person or in another dose it might be different. But I am not willing to take that ever again. Not to say how much weight I gained with Zyprexa, how it disturbed my cognition and my sleep and how much it caused RLS either. Same thing for Quetiapin (Seroquel). No, no neuroleptics for me ever again, if I have the choice to avoid that!
Greetings
missk

 

[DeGenesis]

@Hip Sorry to tell you this, and we are all different - but I myself will NEVER take Risperdal again. They pushed me on zero time to 4mgs a day, and I sufered from total emotional numbness, restless legs and the urge to move and walk and stay in movement all day long (causing me crashes), couldn´t pee properly as bladder muscles were tightened, hypersomnia in the beginning, amenorrhea (ok you don´t risk that ^^), and my breats lost milk!!! They only changed medication after six weeks, first they told me I was projecting my psychotic experiences on the drug devil and admitted that I had severe side effects only when that damned milk was visible even through my clothes. They immediately gave me Zeldox (Zolperidone) instead with the other stuff still circulating in my blood, and like that the restless legs and forced movement increased even more, plus the emotional numbness, it was horrible that day, I couldn´t sit or lie still for a sec, it is like torture.

Ok, for another person or in another dose it might be different. But I am not willing to take that ever again. Not to say how much weight I gained with Zyprexa, how it disturbed my cognition and my sleep and how much it caused RLS either. Same thing for Quetiapin (Seroquel). No, no neuroleptics for me ever again, if I have the choice to avoid that!
Greetings
missk

Akathisia is utter torture, I have experienced it myself, both off and on medications. On one occasion I was given a high-dose of loxapine. I won't say what I felt like doing while I suffered. I can totally understand your visceral reaction to hearing about neuroleptics. I think they can be useful in certain scenarios for non-psychotic people, but as you say, another person, and with a different dose.

I don't think I will cause too much controversy here (Have I learned?) by voicing my opinion (different from advice) that SSRIs and antipsychotics are prescribed way too often, and even more importantly, at doses that are way too high.

 

[heapsreal]

@Hip Sorry to tell you this, and we are all different - but I myself will NEVER take Risperdal again. They pushed me on zero time to 4mgs a day, and I sufered from total emotional numbness, restless legs and the urge to move and walk and stay in movement all day long (causing me crashes), couldn´t pee properly as bladder muscles were tightened, hypersomnia in the beginning, amenorrhea (ok you don´t risk that ^^), and my breats lost milk!!! They only changed medication after six weeks, first they told me I was projecting my psychotic experiences on the drug devil and admitted that I had severe side effects only when that damned milk was visible even through my clothes. They immediately gave me Zeldox (Zolperidone) instead with the other stuff still circulating in my blood, and like that the restless legs and forced movement increased even more, plus the emotional numbness, it was horrible that day, I couldn´t sit or lie still for a sec, it is like torture.

Ok, for another person or in another dose it might be different. But I am not willing to take that ever again. Not to say how much weight I gained with Zyprexa, how it disturbed my cognition and my sleep and how much it caused RLS either. Same thing for Quetiapin (Seroquel). No, no neuroleptics for me ever again, if I have the choice to avoid that!
Greetings
missk

did you have the same side effects from low doses like .5mg as well?
My understanding from what @Hip is saying was the low doses helped 'some' people, the higher doses didnt.

 

[DeGenesis]

So, I think I understand the elephant in the room. If I am wrong. Tell me to shut my mouth. Or just follow me and like any post that disagrees with me .

I understand that there is a huge amount of anti-psychiatry sentiment around here, and who can blame any of you? However, I believe that some psychiatric drugs can potentially have positive effects in some individuals, and almost always for reasons that psychiatrists do not understand. As always, your mileage may vary. Also I am not advocating that you should lie to your psychiatrist. This is not medical advice.

 

[misskatniss]

@heapsreal hm that is quite an interesting question, I don´t know cause hey started with 1mg ;-) and raisd that in a week up to 4... I have also read abot LDN, so maybe in low doses it would work, but I am quite sensitive regarding akathisia / RLS - don´t know if it is worth the trouble for me. And as it didn´t take away my fatigue, I do not think it would bring any benefit. What other methods are there to help out with Dopa? Do you hav an idea about that? And no @DeGenesis I do not think what you state is too controversial but even if it were, I am glad we can speak our minds here and exchange ideas, as we are way to often confronted with people out there not taking us seriously, so I take everyone seriously here with his experiences in the first place

 

[misskatniss]

@DeGenesis I was writing contemporarily, hey, do not take that personally, infact I think you could be right! It´s just that I don´t know. And maybe it wouldn´t work for me, but that don´t mean it wouldn´t for anybody! Know a girl who returned to life from severe CFS with Lyrica! Anything is possible. Thank god.

 

[DeGenesis]

@heapsreal hm that is quite an interesting question, I don´t know cause hey started with 1mg ;-) and raisd that in a week up to 4... I have also read abot LDN, so maybe in low doses it would work, but I am quite sensitive regarding akathisia / RLS - don´t know if it is worth the trouble for me. And as it didn´t take away my fatigue, I do not think it would bring any benefit. What other methods are there to help out with Dopa? Do you hav an idea about that? And no @DeGenesis I do not think what you state is too controversial but even if it were, I am glad we can speak our minds here and exchange ideas, as we are way to often confronted with people out there not taking us seriously, so I take everyone seriously here with his experiences in the first place

Great post and I realize you are tagging me in post #30, and not my latest post.

 

[DeGenesis]

@DeGenesis I was writing contemporarily, hey, do not take that personally, infact I think you could be right! It´s just that I don´t know. And maybe it wouldn´t work for me, but that don´t mean it wouldn´t for anybody! Know a girl who returned to life from severe CFS with Lyrica! Anything is possible. Thank god.

We posted at the same time.

Nothing is taken personally. I'm just wary of stepping on people's toes. I know ME is super complicated and extremely difficult to live with, and that can definitely make people sensitive. All I knew was CFS, really. It was not until recently that I now understand the degree of disability that some people have to endure.

 

[misskatniss]

I agree. Oh that is true. But I think all toes are still alright :-D Good night!!

 

[heapsreal]

@heapsreal hm that is quite an interesting question, I don´t know cause hey started with 1mg ;-) and raisd that in a week up to 4... I have also read abot LDN, so maybe in low doses it would work, but I am quite sensitive regarding akathisia / RLS - don´t know if it is worth the trouble for me. And as it didn´t take away my fatigue, I do not think it would bring any benefit. What other methods are there to help out with Dopa? Do you hav an idea about that? And no @DeGenesis I do not think what you state is too controversial but even if it were, I am glad we can speak our minds here and exchange ideas, as we are way to often confronted with people out there not taking us seriously, so I take everyone seriously here with his experiences in the first place

I use seroquel for sleep sometimes in low doses like 25-50mg, it seems hit and miss with it causing muscle pain the next morning or RLS. But using them intermittently for sleep has helped reduce side effects for me.

As for energy, cognitive energy and stamina anyway i have found low doses of modalert(25-50mg) helpful without overstimulating me, also used intermittently. Its suppose to work differently to amphetamines but does have an effect on dopamine and its said to be neuroprotective??

Its hard to find something that works as its all trial and error and alot of things dont work all the time, this is why i think using things intermittently is helpful for us.

Something else that might help, have you looked into nootropics, things in the racetam family like piracetam and aniracetam, they can help with cognitive energy??

 

[Hip]

I read a study hypothesized that risperidone at 0.25 mg (not far from the 0.5 mg you mentioned) would be a relatively selective 5-HT2A antagonist. Check out that binding affinity!

http://www.ncbi.nlm.nih.gov/pubmed/21189367
http://www.biomedcentral.com/1471-244X/9/25

EDIT: Both studies achieved results at 0.25 mg, but neither mentions selectivity for 5-HT2A at that dose, so I can not make that claim. I will look further.

Risperidone is also a potent alpha-2 antagonist.

http://www.ncbi.nlm.nih.gov/pubmed/9194049

So this alpha 2 adrenergic receptor antagonism makes risperidone an alpha blocker drug.

@Hip , would any neuroleptic at very low doses agonize D2 receptors, or is this a quality special to amisulpride? Thanks!

I am not sure, but I know it applies to amisulpride. At low doses, amisulpride blocks the dopamine autoreceptors. An autoreceptor is presynaptic regulatory feedback mechanism which controls how much of a neurotransmitter like dopamine is being released into the synapse (the junction between adjacent neurons). When you block the dopamine autoreceptors, it makes the neuron think there is not enough dopamine in the synapse, so more dopamine is released. In this way, blocking dopamine autoreceptors leads to more dopamine release.

However, as you increase the dosage of amisulpride, then this drug starts to antagonize the postsynaptic dopamine receptor (the normal dopamine receptor), and at these higher doses the net effect is dopamine antagonism.†

Amisulpride doses go up to 1200 mg for schizophrenia, but the dose I take for ME/CFS is just a tiny fraction of that: 12.5 mg daily.

 

[Hip]

@Hip Sorry to tell you this, and we are all different - but I myself will NEVER take Risperdal again. They pushed me on zero time to 4mgs a day, and I sufered from total emotional numbness, restless legs and the urge to move and walk and stay in movement all day long (causing me crashes), couldn´t pee properly as bladder muscles were tightened, hypersomnia in the beginning, amenorrhea (ok you don´t risk that ^^), and my breats lost milk!!! They only changed medication after six weeks, first they told me I was projecting my psychotic experiences on the drug devil and admitted that I had severe side effects only when that damned milk was visible even through my clothes. They immediately gave me Zeldox (Zolperidone) instead with the other stuff still circulating in my blood, and like that the restless legs and forced movement increased even more, plus the emotional numbness, it was horrible that day, I couldn´t sit or lie still for a sec, it is like torture.

Ok, for another person or in another dose it might be different. But I am not willing to take that ever again. Not to say how much weight I gained with Zyprexa, how it disturbed my cognition and my sleep and how much it caused RLS either. Same thing for Quetiapin (Seroquel). No, no neuroleptics for me ever again, if I have the choice to avoid that!
Greetings
missk

Sorry to hear about you terrible experience with risperidone.

Though at a dose of 4 mg of risperidone, @misskatniss, you were taking far too much for ME/CFS treatment. If you read the quote below, from someone who obtained remission from ME/CFS using risperidone, he takes only 0.5 mg daily.

He says that at this very low dose of 0.5 mg, risperidone boosts dopamine, but higher risperidone doses have the opposite effect, and reduce dopamine. So you have to keep in the very low dose range.


I personally am always wary about taking an psychiatric drug prescribed by my doctor. I prefer to do my own research, and buy the drug online, and test the drug very carefully and cautiously at low doses first, watching out for any side effects. Several psychiatric drugs I have tried have caused unpleasant side effects, but because I started at a low dose, and because I was very vigilant an in control of the situation myself, I was able to quickly stop the taking the drug before the side effects got worse. I also make sure that I only try new drugs on days that I a feeling reasonably good: just in case there are any side effects, I want to be in a good state to start with so that I can best cope with them.

Posted by tgb, March 15, 2010:

Just to inform you that I recover from CFS by the following treatment : 0.5mg/day of Risperdal.

I pointed out that I take 0.5mg/day, meaning a very low dose. It is a key point with the type of molecule, because very higher dose you face sleepiness & brain fog like standart CFS.

I have been taken the treatment for the last 1.5 year, and it still works perfectly.

———————————————————————————————

Pharmacologicaly speaking, with such high dose you aim an hypodopaminergic action, leading to side effects sometimes.

On the opposite, at low dose like 0.5mg/day, the aim is to lead to an hyperdopaminergic action : it is strictly the opposite ! Thus, as the action on neurons is opposite, no risk to develop side effects as mentionned in the article of wiki which focus only on hypodopaminergic action of antipsychotics.

To be complete, this hyperdopaminergic action of low dose risperidone, that enable to get out of CFS, can be obtained within a very narrow range of dosage.

For instance, at 0.2mg/day, the dose is often to low to have any effect on CFS symptoms. At 0.5mg/day you are back in good shape. At 1mg/day, the dose is too high, you face an hypodopaminergic action, meaning you are sedated ; you created artificially the symptoms of CFS.

As you can see, the window in which you have the relavant action of Risperdal is between 0.25 an 1mg/day. It's up to the patient to find out the right dosage that fits the best to him.

So, don't worry about side effects, within this efficient window, you are very far from the usual range for Risperdal (3 to 16mg/day).

Source: here.

In another thread here, the same risperidone dosing advice is given: at very low doses risperidone helps the fatigue and cognitive issues of ME/CFS; but high doses it make ME/CFS worse.