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Tart Cherry Jam
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Default Jan 29, 2024 at 05:50 PM
  #1
cross-posting in the Bipolar forum

I am now on a stimulant medication for narcolepsy which is more commonly prescribed for ADHD. I do not have ADHD. The medication is producing side effects, and especially triggering hypomania and insomnia. The medication is Dexedrine. There are other stimulants to try.

if I take too little, I still need naps during the day. If I take a full dose, I end up sped up etc.

If you have ADHD comorbid with Bipolar, what is your treatment regimen?

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Bipolar I w/psychotic features
Last inpatient stay in 2018

Geodon 40 mg
Seroquel 75 mg
Lybalvi 5 mg as a PRN

Gabapentin 1200 mg, Vitamin B-complex (against extrapyramidal side effects)

Long term side effects from medications some of them discontinued:
- hypothyroidism
- obesity

Suspected narcolepsy

Treated with Ritalin 5mg
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Brentus
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Default Feb 26, 2024 at 04:19 PM
  #2
Hi there @Tart Cherry Jam,
I know this was posted a while back, but I thought I'd try to get a response in for you. I am diagnosed with both ADHD and Bipolar. Stimulant meds can be a bit tricky -- sometimes it's dose related, sometimes it's a need for a different medication. I was wanting to check in and see how you are doing on it? 5mg I think is the lowest dose for Dexedrine(dextroamphetamine), so if you're still having problems with that maybe you could talk to your doctor about maybe trying Adderall (Dextroamphetamine-amphetamine) (a combination drug of dextro- and levo- amphetamine; has a different effect profile than straight dexedrine), or perhaps try Ritalin based drugs (methylphenidate drugs).

In general, amphetamine based stimulants are going to be more potent, and actually create a efflux of dopamine out of the cell. Methylphenidate doesn't cause the efflux of or "rushing out of dopmaine", but does increase it in the synpatic cleft. If your issues are feeling hypomanic and can't sleep-- I'd say you'd be better to try a ritalin based product OR attempt Adderall or even racemic amphetamine (50/50 Dextro- and levo- amphetamine) called Evekeo. Also, I can attest to a lot of the issues with sleep and hypomanic feelings tend to wane with a little time. Has your medicine been working for the narcolepsy well? Are you tolerating it? Have the issues you had subsided?

Anyway, I hope you find this helpful. for ADHD, narcolepsy, and all things stimulant related -- there is are TONS of options out there. Don't get discouraged. It's a trial and error, both dosage and type of med. I hope you find yours soon.



I should mention there are some nacrolepsy specific "wake-inducing agent" meds to try as well.

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Tart Cherry Jam
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Default Feb 26, 2024 at 04:27 PM
  #3
the wake-inducing agents are out of reach for me. My doctor cannot prescribe them: they are available only from special doctors and special pharmacies, not general retail pharmacies. And to get those medications through those specific channels, you have to fill out a questionnaire and mention the medications you are taking. Since I take Seroquel to fall asleep, I would not qualify for wake-inducing agents. They consider combining them with hypnotics too risky.

Thank you greatly for all the info! I will explore!

__________________
Bipolar I w/psychotic features
Last inpatient stay in 2018

Geodon 40 mg
Seroquel 75 mg
Lybalvi 5 mg as a PRN

Gabapentin 1200 mg, Vitamin B-complex (against extrapyramidal side effects)

Long term side effects from medications some of them discontinued:
- hypothyroidism
- obesity

Suspected narcolepsy

Treated with Ritalin 5mg
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Tart Cherry Jam
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Default Mar 01, 2024 at 11:00 PM
  #4
Brentus,

I was not able to tolerate Dexedrine due to two side effects besides the tendency to cause hypomania and insomnia. They are:
- the need to constantly swallow saliva. get especially bad at night, interfering with falling asleep
- loss of fine motor precision; I would literally type gibberish, missing the keys. And I am normally a very precise typist who rarely makes typos.

So Dexedrine is not for me. I will be trying alternatives soon. Thanks for posting about Adderall shortage.

__________________
Bipolar I w/psychotic features
Last inpatient stay in 2018

Geodon 40 mg
Seroquel 75 mg
Lybalvi 5 mg as a PRN

Gabapentin 1200 mg, Vitamin B-complex (against extrapyramidal side effects)

Long term side effects from medications some of them discontinued:
- hypothyroidism
- obesity

Suspected narcolepsy

Treated with Ritalin 5mg
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Brentus
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Default Mar 02, 2024 at 01:59 PM
  #5
@Tart Cherry Jam , I would suspect then that maybe a methylphenidate product, especially a slow releasing one like Concerta, in a lower dose would really help with those side effects. I'm unsure, however, how effective a low dose will be for keeping you awake though. Most of my knowledge of stimulants is for the use for ADHD, and in general for narcolepsy the dosages tend to run a bit higher. Obviously your doctor will be the expert here -- but that would be where I see things going since wake inducing-agents are off the table.

This following excerpt is about ADHD meds not working correctly, but I think it applies to you as well. It's partially where I've gained the knowledge about these medicines and how they are used, and differ.

ADHD Medication Stopped Working? Troubleshoot Problems
"In general, younger or newly diagnosed children do better on methylphenidates, as do those sensitive to stimulants. Usually its best to start with a small dose of short-acting methylphenidate to see if it is tolerated, and to gradually increase the dose to find the optimal dose for that individual. After a tolerable dosing range is established, a longer-acting form of methylphenidate, like Ritalin LA, Jornay PM, or Quillivant XR, might be tried.

Adolescents and adults generally do better on amphetamines, like Adderall, Mydayis, or Vyvanse. But there are myriad exceptions, and no one knows right off which class will work best. If an individual is sensitive to medications or to caffeine, perhaps start with a trial of methylphenidate before trying an amphetamine."

So in this case, straight dextroamphetamine (the stronger entianomer of amphetamine) at the lowest dose causes you a lot of issues. Therefore, maybe rather than trying something like Adderall (a 3:1 mix of dextro and levo-ampetamine), I would think a methylphenidate would be the better way to go, since you seem sensitive to amphetamine.

It's important to note most people respond well to one or the other molecule -- but there's no way of knowing which you will respond best to.

Just to try to relate this better to narcolepsy, I've found this info:

https://www.mayoclinic.org/diseases-...t/drc-20375503

"Medications

Medicines for narcolepsy include:

Some people need treatment with methylphenidate (Ritalin, Concerta, others) or amphetamines (Adderall XR 10, Dexedrine, others). These medicines are effective but can be habit-forming. They may cause side effects such as nervousness and a fast heartbeat."

So, methylphenidate is a valid narcoleptic FDA approved option here. If you cannot tolerate it, I guess the next option would be trying alternatives like TCAs or SNRIs.



Like I said in the beginning, there are options to help you -- it's just a matter of seeing what will work for you.


Again, there's an article on ADHD meds, not specifically narcolepsy, but it talks about how a certain percentage of people have an "optimal dose" below the recommended or lowest made dose. There are ways to acheieve those doses as well, especfially with methylphenidate -- which comes in liquids, chewables, patches, ODTs etc. There's plenty of options and delivery mechanisms to augment actual dose.
Perhaps even with your Dexedrine could be cut back from 5 to half?



I hope this info finds you well, and you can work with your doctor to figure out what is best for you!

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Last edited by Brentus; Mar 02, 2024 at 02:52 PM..
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Tart Cherry Jam
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Default Mar 02, 2024 at 04:44 PM
  #6
We will work with him to figure it out. He is by no means an expert and I am thankful to him for even trying to find a solution for me since narcolepsy is not a psychiatric condition. Thank you so much! A plethora of useful pointers to me to explore.

I will also discuss these pointers with my sleep psychologist. I will see her on the 7th. Will update the thread after I see her.

__________________
Bipolar I w/psychotic features
Last inpatient stay in 2018

Geodon 40 mg
Seroquel 75 mg
Lybalvi 5 mg as a PRN

Gabapentin 1200 mg, Vitamin B-complex (against extrapyramidal side effects)

Long term side effects from medications some of them discontinued:
- hypothyroidism
- obesity

Suspected narcolepsy

Treated with Ritalin 5mg
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Default Mar 08, 2024 at 03:54 AM
  #7
There's one additional amphetamine-based stimulant, Evekeo (amphetamine sulfate). IME, it's not the greatest stimulant, but it's even "milder" than Adderall.

There are some non-stimulant wakefulness promoting agents, such as modafinil (Provigil), armodafinil (Nuvigil), Sunosi (solriamfetol), and Wakix (pitolisant). Modafinil and armodafinil both do work on increasing dopamine levels, as well as being a D2 partial agonist, but their main mechanism of action for promoting wakefulness is through increasing orexin, a wakefulness-promoting neuropeptide. Sunosi actually may as well be a stimulant since it's a norepinephrine-dopamine reuptake inhibitor. Wakix is a histamine H3 inverse agonist, causing enhanced release of histamine in the brain. There are also actually sedatives specifically for narcolepsy, Xywav and Xyrem. They're both oxybate, but Xyrem is just sodium oxybate, whereas Xyrem is a combination of calcium oxybate, magnesium oxybate, potassium oxybate, and sodium oxybate in an attempt to decrease the amount of sodium from the medicine and improve the taste (Xyrem doesn't taste so great, and while Xywav doesn't taste good per se and has an artificial sweetener in it, it doesn't taste "good" per se... lol). It's basically prescription GHB which consolidates REM sleep and improves next-day hypersomnia.

Perhaps with hopefully one of these meds, you could be able to treat your narcolepsy without the need of a mood stabilizer or antipsychotic.

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Default Mar 08, 2024 at 10:25 AM
  #8
So the latest news that my condition greatly improved either just randomly or because of increasing iron levels since I began treating my anemia after it was discovered a month ago.

I saw thr sleep psychologist yesterday. She had researched the issue. Anemia can cause a worsening in sleep quality and an increase in sleep need plus extreme fatigue. I stopped donating blood. I last donated in December and would have been due again tomorrow but I have canceled. So maybe it was not narcolepsy after all but anemia. I also got Restless Leg Syndrome and was not able to make my body warm, both consistent with thr iron deficiency anemia diagnosis.

Thank you for the trove of additional info! If I end up needing pharmacological help, I will try these agents.

__________________
Bipolar I w/psychotic features
Last inpatient stay in 2018

Geodon 40 mg
Seroquel 75 mg
Lybalvi 5 mg as a PRN

Gabapentin 1200 mg, Vitamin B-complex (against extrapyramidal side effects)

Long term side effects from medications some of them discontinued:
- hypothyroidism
- obesity

Suspected narcolepsy

Treated with Ritalin 5mg
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Default Mar 08, 2024 at 11:58 AM
  #9
mikrw33 Great information! I read your profile and saw your interested in psychopharmacology. Me too! We also share a lot of diagnoses. I haven't seen you around before-- just wanted to say hi!

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Tart Cherry Jam
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Default Apr 18, 2024 at 03:54 PM
  #10
It worsened again, making us think that I do have narcolepsy and it was not just related to low iron, because it worsened while the iron reserves were (very slowly) improving. So I asked my pdoc to prescribe Ritalin.

Ritalin is working for this. And very gently, with no side effects at the lowest dose. I tried two tablets (not at the same time) last week and got terribly dizzy. It felt as if something inside my head were spinning. I then look up dizziness and it is a common side effect of Ritalin. Luckily at the lowest dose I do not get dizzy.

For now I am in a state of (happy) disbelief that a solution has been found that works so very gently.

__________________
Bipolar I w/psychotic features
Last inpatient stay in 2018

Geodon 40 mg
Seroquel 75 mg
Lybalvi 5 mg as a PRN

Gabapentin 1200 mg, Vitamin B-complex (against extrapyramidal side effects)

Long term side effects from medications some of them discontinued:
- hypothyroidism
- obesity

Suspected narcolepsy

Treated with Ritalin 5mg
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