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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 10 of 10. This is the beginning of the thread.
Posted by back_to_school on August 12, 2013, at 23:31:17
Good evening --
I've been on Emsam 12mg for close to two years now, and to this day I can't believe the difference it has made in my life.
Unfortunately, I started having episodes of extreme daytime sleepiness late last year, despite using a CPAP at night for severe sleep apnea. My doctor prescribed Provigil, went as high as 200mg twice daily, but it did not help. Also tried Nuvigil, but I can't remember the dosage. Doc says Emsam doesn't mix well with stimulants (Ritalin, etc), and honestly I would prefer to avoid anything of that nature.
After the Provigil and Nuvigil failed, doc recommended me for an MSLT in January, which gave a positive diagnosis for narcolepsy. I purposefully avoided doing research on narcolepsy, as I'm the type that will read about a symptom and begin experiencing it the next day. However, in March I began having episodes of sleep paralysis - not knowing about this, I thought I had a stroke/heart attack after the first episode. In June, I began having auditory hallucinations as I was dozing off - again, not knowing about the hypnagogic hallucinations associated with narcolepsy.
I did read about Xyrem, but doc says that is also contraindicated with Emsam.
I'm at the point where I can no longer just "deal" with the narcolepsy: some days and nights are fine. Sometimes I have to pull to the side of the road while driving because out of nowhere, I cannot keep my eyes open. Sometimes I just lay in bed sobbing, because I'm exhausted but I can't fall asleep. The sleep paralysis is possibly the worst piece - even after all these months, each episode is still utterly terrifying.
My biggest problem is that the Fall semester begins in two weeks. I'm a 27 year old college sophomore, because I had to put my education on hold while a series of psychiatrists tried what seems like a thousand different combinations of meds to treat my depression. After a particularly serious suicide attempt, involving two days under general anesthesia and on dialysis, I was referred to my current doctor, who was the first to even mention MAOI's.
I really can't give up Emsam, it has had such an incredible impact on every aspect of my life. I never want to go back to that place of darkness and despair - I'm a real person now, I have a life, and I plan on staying this way.
I'm hoping someone out there has had a similar difficulty, and found a solution that works. ANY insight would be hugely appreciated.
As a secondary question, has anyone been on Emsam for a long period of time, or greater than two years? I asked my doc if the effectiveness is known to ever wear off, but he only has one other patient on Emsam, and for a shorter period than me.
Thanks again for any response.
Posted by SLS on August 13, 2013, at 6:01:36
In reply to Emsam and narcolepsy, posted by back_to_school on August 12, 2013, at 23:31:17
I have combined amphetamine and methylphenidate with Parnate and Nardil. There are no true contraindications combining these drugs, despite what is written in the package labeling. However, one might want to check his blood pressure when first adding amphetamine to Parnate to screen for a hypertensive reaction, which I believe is relatively uncommon. It is common for Nardil and Parnate to produce hypotension as a side effect. Experienced doctors sometimes prescribe methylphenidate expressly to remedy this. I recently added Adderall to Parnate + nortriptyline and Focalin to Nardil + nortriptyline. These treatments are considered aggressive, but are not terribly risky. If in doubt, buy a blood pressure cuff.
I don't know of any reason why Emsam would be uniquely dangerous when combined with a stimulant. However, since I am not absolutely sure of this, I recommend that you continue to seek guidance on this issue. If it were me, I would seriously consider using a stimulant to treat the narcolepsy, despite its being combined with Emsam. If it is of any significance to your doctor, Emsam actually is converted into both amphetamine and methampetamine in the body.
What happens when you combine Xyrem with Emsam?
- Scott
Posted by tensor on August 13, 2013, at 9:45:07
In reply to Re: Emsam and narcolepsy » back_to_school, posted by SLS on August 13, 2013, at 6:01:36
>Emsam actually is converted into both amphetamine and methampetamine in the body.
>
> - ScottI believe it's converted to l-amphetamine and l-methamphetamine, don't know the implications of this in this case, though.
/tensor
Posted by Phillipa on August 13, 2013, at 9:50:19
In reply to Re: Emsam and narcolepsy » SLS, posted by tensor on August 13, 2013, at 9:45:07
Have you gotten a second opinion? Phillipa
Posted by SLS on August 13, 2013, at 11:20:26
In reply to Re: Emsam and narcolepsy » SLS, posted by tensor on August 13, 2013, at 9:45:07
> >Emsam actually is converted into both amphetamine and methampetamine in the body.
> >
> > - Scott
>
> I believe it's converted to l-amphetamine and l-methamphetamine, don't know the implications of this in this case, though.Yes. That would be different. Thanks for the correction.
- Scott
Posted by back_to_school on August 13, 2013, at 21:28:56
In reply to Re: Emsam and narcolepsy » tensor, posted by SLS on August 13, 2013, at 11:20:26
I haven't sought a second opinion, or even thought about it. My current doc has a reputation for being much more progressive and open-minded than other psychiatrists in the area, and he spends actual time with his patients. My first appointment alone lasted over two hours.
He didn't really elaborate on the difficulties with combining Emsam and a stimulant/Xyrem, but again, I'm one of only two patients he has on Emsam, so he may not be entirely familiar with the true interactions.
I see my doc this Friday, so I will be sure to mention that others have successfully combined Emsam and a stimulant. Is anyone aware of the theoretical problem with Emsam and Xyrem, or has anyone successfully combined the two?
Continued thanks for your time and support...
Posted by creepy on August 14, 2013, at 23:07:35
In reply to Emsam and narcolepsy, posted by back_to_school on August 12, 2013, at 23:31:17
I had sudden onset fatigue a couple years ago. Just suddenly realised how tired I was. sometimes had to take a few naps during the day.
For me the fatigue seems to be a part of the depression. When I treat the depression properly the fatigue is less severe.
You -can- take TCAs while on MAOIs. Check out Dr. Gillman's website or his publications regarding serotonin toxicity.
Im taking sertraline + nortriptyline and its pretty helpful. Alone the sertraline does nothing for fatigue and amphetamines and modafinil didnt help either, like you.
nortriptyline is a weak SRI. Mostly its NRI and serotonin receptor antagonist.
Posted by former poster on August 26, 2013, at 14:45:21
In reply to Emsam and narcolepsy, posted by back_to_school on August 12, 2013, at 23:31:17
Yeah MAOI's.. Only give you 5hrs of sleep a night if you are lucky. You walk around narcoleptic all day.
I was prescribed nardil and amphetamine. When Nardil seemed to lose effectiveness I was placed on amphetamine while on Emsam. I never had any hypertensive problems, however overstimulation became a problem as Emsam seems to metabolise into some sort of amphetamine. I avoided taking the stimulant while on Emsam because it was just too much.
Usually 10-15mg a day of adderall or dextroamphetamine with the MAOI was all I could handle even though I was prescribed 30mg.I tried provigil for a short while. It worked incredible, but it made me feel ill. I stopped provigil suddenly, I had horrible withdrawal symptoms, so scary I am afraid to talk about it.
Posted by Halina Harding on November 24, 2015, at 13:30:49
In reply to Emsam and narcolepsy, posted by back_to_school on August 12, 2013, at 23:31:17
Emsam slows the functioning of succinic acid dehydronase enzyme. For each 1mg of Emsam (selegiline), divide and reduce the dose of Xyrem (sodium oxybate) by the equivalent amount.
For example, common doses of the two medications administered independently are as follows:
Emsam: 6mg/qd
Xyrem: 4.5g/bid qhsWhen administered concomitantly:
Emsam: 6mg/qd
Xyrem: 0.75g/bid qhs reduce the Xyrem dose by 6 (or 9 or 12, depending on the dose of Emsam)Keep in mind that Xyrem suppresses dopamine and allows it to build up, then releases it when the drug wears off. Selegiline quadruples the number of dopamine receptors in the brain, allowing more dopamine to be produced and stored up.
Therefore, you will end up with far too much dopamine if doses ordinarily administered of Xyrem are given in combination with selegiline, particularly with Emsam which is not MAO-selective and affects MAO-A (but only in the brain). However, Selegiline also has a unique mechanism that detects the calcium channel and sodium channel cascade and may in fact completely block Xyrem at doses higher than approximately 2.25g.
Tolerance over time if a dose over 2.25g is given over a period of several weeks and can increase the neurotoxicity of Xyrem. It should not occur at lower doses. Keep in mind that these are starting dose guidelines and Xyrem can safely go up (but only if necessary, titrate to effect). Dont raise the dose until the pt has been taking the combo for several months/years.
Higher doses of Xyrem, however, will eventually override selegilines neuroprotective mechanism, while the accumulating succinic acid in the brain which will block the GABA-B receptor agonism at lower doses, resulting in oxidative stress, overstimulation, and withdrawal symptoms.
The manufacturers of both medications report no interaction between the two drugs, but not all drug interactions are common or classified as such. Therefore, please exercise caution and work with your prescriber to come up with the best treatment plan.
Some notes on Xyrem:
- temperature sensitive and lower temperatures will degrade the medicine (must be 68F-77F)
- if the medicine degrades due to temperature, it will dissolve the plastic bottle its stored in, the dosing syringe, and dosing cups. it will also dissolve your teeth, if it degrades and is then not subsequently diluted with water (see below).
- adding water to the medicine will cause it to spoil and particularly to fungal contamination
- absorbed through aerobic metabolism, the medicine is not absorbed like food, it goes into the air you breathe by coming up through from the stomach through the esophagus and is inhaled into the lungs
- food and water in the stomach will dilute and/or spoil the medication and prevent from being effective
- taste: salty/sweet (stabilized sodium oxybate) or no salty taste (degraded into 25-50% butyrolactone); eventually degraded medicine will develop an off taste from the pH change causing fungal spoilage
- raising the temperature of the medicine will stabilize the medication (could take up to a week at room temperature)
- oral dosing syringes will turn white and hazy when the medication is dissolving the plastic; also the rubber stopper will stick; at this point discard the syringe as it cannot be reversed
- add a small amount of air to the top of the oral syringe before measuring the ensure that the medication does not touch the rubber stopper
- baxter piba (clear and soft rubbery plastic) tends to burp the medicine and causing small air bubbles and droplets vs comar (white and firm/hard plastic) which will measure up smoothly
- refrigeration will cause the medicine to degrade and/or dissolve the bottle
- never ever drink cold or refrigerated Xyrem - particularly without dilution!FYI, there is a patent on using Selegiline as a neuroprotective mechanism and over the treatment of overdose with Sodium Oxybate.
Dr Harding
Posted by Halina Harding on November 24, 2015, at 13:31:00
In reply to Emsam and narcolepsy, posted by back_to_school on August 12, 2013, at 23:31:17
Emsam slows the functioning of succinic acid dehydronase enzyme. For each 1mg of Emsam (selegiline), divide and reduce the dose of Xyrem (sodium oxybate) by the equivalent amount.
For example, common doses of the two medications administered independently are as follows:
Emsam: 6mg/qd
Xyrem: 4.5g/bid qhsWhen administered concomitantly:
Emsam: 6mg/qd
Xyrem: 0.75g/bid qhs reduce the Xyrem dose by 6 (or 9 or 12, depending on the dose of Emsam)Keep in mind that Xyrem suppresses dopamine and allows it to build up, then releases it when the drug wears off. Selegiline quadruples the number of dopamine receptors in the brain, allowing more dopamine to be produced and stored up.
Therefore, you will end up with far too much dopamine if doses ordinarily administered of Xyrem are given in combination with selegiline, particularly with Emsam which is not MAO-selective and affects MAO-A (but only in the brain). However, Selegiline also has a unique mechanism that detects the calcium channel and sodium channel cascade and may in fact completely block Xyrem at doses higher than approximately 2.25g.
Tolerance over time if a dose over 2.25g is given over a period of several weeks and can increase the neurotoxicity of Xyrem. It should not occur at lower doses. Keep in mind that these are starting dose guidelines and Xyrem can safely go up (but only if necessary, titrate to effect). Dont raise the dose until the pt has been taking the combo for several months/years.
Higher doses of Xyrem, however, will eventually override selegilines neuroprotective mechanism, while the accumulating succinic acid in the brain which will block the GABA-B receptor agonism at lower doses, resulting in oxidative stress, overstimulation, and withdrawal symptoms.
The manufacturers of both medications report no interaction between the two drugs, but not all drug interactions are common or classified as such. Therefore, please exercise caution and work with your prescriber to come up with the best treatment plan.
Some notes on Xyrem:
- temperature sensitive and lower temperatures will degrade the medicine (must be 68F-77F)
- if the medicine degrades due to temperature, it will dissolve the plastic bottle its stored in, the dosing syringe, and dosing cups. it will also dissolve your teeth, if it degrades and is then not subsequently diluted with water (see below).
- adding water to the medicine will cause it to spoil and particularly to fungal contamination
- absorbed through aerobic metabolism, the medicine is not absorbed like food, it goes into the air you breathe by coming up through from the stomach through the esophagus and is inhaled into the lungs
- food and water in the stomach will dilute and/or spoil the medication and prevent from being effective
- taste: salty/sweet (stabilized sodium oxybate) or no salty taste (degraded into 25-50% butyrolactone); eventually degraded medicine will develop an off taste from the pH change causing fungal spoilage
- raising the temperature of the medicine will stabilize the medication (could take up to a week at room temperature)
- oral dosing syringes will turn white and hazy when the medication is dissolving the plastic; also the rubber stopper will stick; at this point discard the syringe as it cannot be reversed
- add a small amount of air to the top of the oral syringe before measuring the ensure that the medication does not touch the rubber stopper
- baxter piba (clear and soft rubbery plastic) tends to burp the medicine and causing small air bubbles and droplets vs comar (white and firm/hard plastic) which will measure up smoothly
- refrigeration will cause the medicine to degrade and/or dissolve the bottle
- never ever drink cold or refrigerated Xyrem - particularly without dilution!FYI, there is a patent on using Selegiline as a neuroprotective mechanism and over the treatment of overdose with Sodium Oxybate.
Dr Harding
This is the end of the thread.
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