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Help tapering off Lamictal and finding new med

W

WordsInfluence

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I have cyclothymic and severe depression, GAD, Pure O OCD and PTSD. I also have a slow metabolism so a small dose of a med for others has the effects of a larger dose for me.

I’m on Lamictal and I’m not tolerating it. Major fatigue issues since I started taking it 7 months ago. It’s awful.

My doc told me two weeks ago to go from 50mg to 100mg to manage my mood shifts and I was bedridden. Went back to 50 and now on 25 as per the doc.

My fatigue doctor said I need to drop Lamictal.

How can I slowly taper off 25mg? Can I dissolve a tablet in water and use a syringe? Never tried dissolving Lamictal tablets before.

Psychiatrist said we could try Latuda after Lamictal leaves my system. would that take a week or two to flush out after stopping the drug?

Challenges figuring out the replacement med. I took Abilify years ago and it caused me to have Restless Leg Syndrome which I manage with another med called Neupro. My neuro told me Latuda could worsen the RLS and might cause Parkinson’s.

I asked my psych about Depakote and he said he doesn’t recommend it cause it could cause a lot of side effects.

i took Lithium for 20 years 900mg and I was always depressed on it. Tapered off it last year with my old psychiatrist over 5 months and then went on Lamictal. Depression largely went away on Lamictal but the fatigue is devastating and my mood is volatile cause I’m on a low dosage.

My new psychiatrist isn’t sure what else he’d recommend for mood stability.

Any suggestions from people who didn’t tolerate Lamictal or Lithium well, and aren’t good fits for Latuda or other antipsychotics?

I’m a little confused about his issues with Depakote. We did genetic testing with Genomind and based on the results the psych said the best option for me is Lithium but like I told him, I was always super depressed. He then said he only prescribes Depakote to patients with an ANK3 genetic variation and since I don’t have one, he said that med could cause tons of bad side effects.

I’m very hypomanic today and it’s not good. Something’s gotta give but we haven’t figured out the next med to pursue for mood stability.

I also take 5mg Lexapro and definitely need something to stabilize my mood.
 
Tawny

Tawny

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Your fatigue might be depression as you lamotrigine dose is too low. The more i took, the more awake i felt. 150mg is the therapeutic dose.

You say you have a fast metabolism with medication but 900mg Lithium is a large dose. I took 600mg.

Depakote made me feel like a zombie.

I haven't heard of Latuda.

All medications are going to make you tired or zombie like, especially the antipsychotics. Lithium should be the best so maybe that dose was too high. Lamitrigine, i think 150mg is worth trying.

You cannot be splitting tablets and disolving tablets, that is so dangerous.

You also need to settle on one medication. i have been on mine for 6 years and the longer i took it the better i felt. They don't work quickly, they take 4-6 months to really work well for you or be noticably working because it takes time for an episode to end and the highs and lows to flatten.

It is a pity your doctor is so unhelpful so that you feel you have no choice other than to be your own pharmacist. I think finding a better doctor would be essential. I think a mood disorder clinic, if you have those, might be a better referral.

I'm sorry i cannot be of more help but this is such a complicated issue and needs a psychiatrist. I would forget about depakote but that is up to you. Lamotrigine is one of the best and least sedating and yet still makes us all a bit tired. This time of year though, it doesn't make me tired because my mood is better. If it is summer where you are, you should be feeling better. If not, you might have some depression going on and so need more lamotrigine. It is a good antidepressant too. If it is not lifting depression well enough, you might need to add an antidepressant too. I take escitalopram.

Again, therapeutic dose of lamotrigine is 150mg.

Good luck. You need to get this sorted as i can tell it is stressful.
 
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WordsInfluence

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Your fatigue might be depression as you lamotrigine dose is too low. The more i took, the more awake i felt. 150mg is the therapeutic dose.
It's not the case for me. I'm not depressed. I haven't been depressed except for one 2-day period in the last 6 months. I thought I'd mentioned that in my post, but maybe I forgot. The one major benefit of dropping Lithium and moving to Lamictal was the almost complete reduction in depression.

I'll also say this isn't a typical fatigue. Symptoms for 6 months include: shortness of breath all day, non-restorative sleep (I'm tired right when I wake up no matter how much I sleep), excessive yawning (I yawn between 200-500 times a day, seriously). I have many doctors on the case and right now the greatest hypothesis is it's the Lamictal. My docs include a psychiatrist, neuro, endo, pulmonary, rheumatologist, psychologist, and integrative fatigue specialist.
You say you have a fast metabolism with medication but 900mg Lithium is a large dose. I took 600mg.
No, I said I have a slow metabolism. But I should have been more specific. I have a supremely high Bilirubin count. Always have. It's a disorder called Gilbert's. It in itself isn't dangerous but it affects my metabolism. This means a large dose of many meds for you is a very very large dose for me. But it depends on the med.

Lithium is processed through the kidneys, and I've been told by my doctors that my slow metabolic rate doesn't affect Lithium intake cause Gilbert's isn't related to the kidneys. That said, I asked my psychiatrist about the 900mg, and whether it could be I was always overmedicated all those years. I wondered, would I do better on a lower dosage of Lithium? He said since my Lithium blood levels were always in the healthy range for 20 years while I took 900mg, that a lower dosage of Lithium could be tried but likely wouldn't be a sufficient amount for my system.

All I know is going back on Lithium if it's gonna bring what it gave me before is a bad idea.
Depakote made me feel like a zombie.
Shit, that sucks. My brother takes it and does pretty well on it, but I'd say he's always pretty numbed mentally, like I was on Lithium. I always accepted that feeling as my norm in life, and no doc for 20 years suggested a change. This is the first time I'm experiencing my life without major depression. Too bad I'm now a zombie.

I haven't heard of Latuda.
I didn't know it was used for mood stability. It's not its primary use. That med would fuck me up, and I couldn't believe my fancy doc didn't realize it. My neuro was shocked when I told him I was prescribed it, even though I already have RLS, which is in itself a disorder that can leave you entirely insomniac. When that happens to me, I lose everything. I've gone super delusional due to insomnia before. One bout of insomnia lasted 5 weeks. Amazing I survived. I lost 40 lbs that month.

All medications are going to make you tired or zombie like, especially the antipsychotics. Lithium should be the best so maybe that dose was too high. Lamitrigine, i think 150mg is worth trying.
Yeah, whatever it is, the fatigue I'm feeling now isn't a normal fatigue at all. I've been very tired before. This isn't it. Jury is still out on whether I also have a parasite or something, so I'm getting a stool test done.

You cannot be splitting tablets and dissolving tablets, that is so dangerous.
My understanding from working with doctors and doing lots of research over the years is that splitting an extended release tablet is a horrible idea. Splitting a standard tablet carries risk because the exact dosage won't be perfectly consistent ie. maybe one day a split 25mg pill is actually 12, another 11, another 13, but that beyond this, these meds can be split and many of them come scored already to ease splitting. What do you know about this? As for dissolving tablets, I think it's a weird move too but it's what I read people do to taper off Lamictal since the smallest affordable pill is 25mg. Most doctors tell me to drop meds pretty quickly and in large increments, and I think that's a death wish.

You also need to settle on one medication. i have been on mine for 6 years and the longer i took it the better i felt. They don't work quickly, they take 4-6 months to really work well for you or be noticably working because it takes time for an episode to end and the highs and lows to flatten.
Yeah totally. I've been on Lamictal for 7 months so I think I'm well passed the testing period. I never had 'an easier time' on Lithium for 20 years. It was always a numbed life, and I was severely depressed probably 30-50% of the days. It's tied to having rapid cycles of mood swings with no pattern, severe depression due to genetics, etc.

After the DNA testing we did, my psychiatrist said that based on a unique genetic mutation I have in my MTHFR: T/T gene, my serotonin levels are about 20% the levels of a healthy person. The mutation means my body doesn't convert Folic Acid to Methylfolate (a building block of serotonin) well, so I only get limited benefit from SSRIs and my serotonin levels are shit. I'm now taking Deplin 15mg which is an already active folate, and it's supposed to help me boost serotonin and make it so I get more benefit from Lexapro. That said, the doc has me staying on 5mg Lexapro which is a low dosage, but since my metabolism is low, it might be the right dosage. What's interesting is the depression faded when I dropped Lithium, long before going on Deplin. So Deplin might be working now but I don't know 'cause I was already not depressed. But I'm definitely volatile as shit these days mood-wise, and my brain is always in a hyper mode now.

It is a pity your doctor is so unhelpful so that you feel you have no choice other than to be your own pharmacist. I think finding a better doctor would be essential. I think a mood disorder clinic, if you have those, might be a better referral.
Thanks. What's weird is this doc I see now is the most knowledgeable one. The most thorough. The most published. The most expensive. The most cautious. etc. In order to see him, I had to answer a 150 question form for him, do genetic testing, and meet with him for 90min as an intro session. He's actually probably one of the better doctors I can get in my city, and I live in one of the biggest cities in the world. So yeah, I'm dumbfounded. My old psychiatrists were completely negligent and downright rude. No doc has a clear plan to treat these disorders, and in my case it's gotten harder because with a lot of mental health diagnoses plus a neuro disorder, a pulmonary sleep disorder, a few spinal injuries, and this fatigue shit, it's all become super complex. It was hard enough when I was just diagnoses bipolar 1, which turned out to be a misdiagnosis.

I lost my job recently but fortunately I've been on disability for the last 6 months, and so I have some income flow through private long term disability through my former employer. I got approved for 4 more months last week, and there's room to renew it up to 2 years total for mental illness. And well, if my fatigue stuff can't be sorted and it gets worse, then I have a non-mental disease that probably justifies disability payments for years to come, but man is it a scary thing to consider.

If you're interested, I was diagnosed last week by the fatigue specialist with what's called ME/CFS. It's not a clear diagnosis yet 'cause it's only diagnosed if docs can't solve your fatigue other ways. It's a last resort diagnosis. He diagnosed me with it now because I need a diagnosis code to submit claims for partial insurance reimbursement. Point being, I might actually have this disease ME/CFS, and it pulverizes lives. Check out the trailer for Unrest if you want to learn more. It's a documentary. The fatigue specialist has two hypothesis at this stage: it's all either the Lamictal or a parasite, and the stool test will answer the parasite question. The only way to validate if it's the Lamictal is to drop Lamictal.
 
Tawny

Tawny

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Sometimes we have to start from scratch and keep it simple.
 
W

WordsInfluence

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Sometimes we have to start from scratch and keep it simple.
I don't know if you read my last reply but I don't know what you mean to say. I could drop all meds and start anew but I'd probably lose my shit and end my life. I mean, dropping my RLS med in itself means no sleep. If you mean drop Lamictal and Lexapro and start on something else, that's kinda what I'm getting at w/ this thread. I'm trying to figure out with my psychiatrist--with help from knowledgeable patients--what we should replace Lamictal with, if in fact we learn that the fatigue goes away when I drop Lamictal.

I will say this though. Not dealing with ultra-severe depression is wonderful. I mean, hypomania brings on tons of problems especially with relationships and the ability to work 'cause I move too fast for my environment and the people around me. And the fatigue is fucking awful. But I'd trade my rock-bottom depression for it any day.

I will say, without getting political, that while I'm not depressed, I am very frustrated and angry often these days because of how horrible people in our country are behaving regarding COVID and the role of racism in our society. I'm not saying I'm an angel but it's very tough to be an American today if you carry empathy, have a high IQ, think about the greater good, and want justice.
 
Tawny

Tawny

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Sometimes we have to start from scratch and keep it simple...

My mind is spinning from all of those words and all of the input so i am sure yours must be too. In England, it is much more simple and straightforward.

I am just putting up with side effects because some may be symptoms, and this is the best of a bad bunch. All medications have side effects and none are going to make me perfectly well. I don't think mental illness works like that. It is only possible to enter recovery and not to be cured.

Recovery is the word here.

Many people are still on benefits due to side effects of medication. It is accepted that life can be harder for those with mental illness and those who can hold down a job or a family are very impressive. They are the lucky ones.

If i can say this laughing and teasing, you must give your doctors a real headache ;)
 
Tawny

Tawny

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I will let more intelligent people reply to your posts :)

Most of us here have a mental illness so it is not always easy to follow long and complicated posts.
 
Tawny

Tawny

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I don't know if you read my last reply but I don't know what you mean to say. I could drop all meds and start anew but I'd probably lose my shit and end my life. I mean, dropping my RLS med in itself means no sleep. If you mean drop Lamictal and Lexapro and start on something else, that's kinda what I'm getting at w/ this thread. I'm trying to figure out with my psychiatrist--with help from knowledgeable patients--what we should replace Lamictal with, if in fact we learn that the fatigue goes away when I drop Lamictal.

I will say this though. Not dealing with ultra-severe depression is wonderful. I mean, hypomania brings on tons of problems especially with relationships and the ability to work 'cause I move too fast for my environment and the people around me. And the fatigue is fucking awful. But I'd trade my rock-bottom depression for it any day.

I will say, without getting political, that while I'm not depressed, I am very frustrated and angry often these days because of how horrible people in our country are behaving regarding COVID and the role of racism in our society. I'm not saying I'm an angel but it's very tough to be an American today if you carry empathy, have a high IQ, think about the greater good, and want justice.
Maybe you are manic right now?
I'm half joking and half wondering
 
W

WordsInfluence

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Maybe you are manic right now?
I'm half joking and half wondering
I'm hypomanic for sure. I have been for most of the time since I dropped Lithium. I've been telling my psychiatrist that my Lamictal dosage was too low, but we had this ongoing struggle between my mood and my fatigue levels, and it's just never ending. I'm super honest and self-aware and yesterday in particular I was very hypomanic. I don't get pure mania though. I'm not bipolar 1. I have bipolar 1 in my family and I know it all too well. I never get that way. My mania is far more controlled and limited. I don't gamble, I don't go have random sex, I don't spend lots of $, none of those extreme behaviors. I just have a lot of thoughts at once and a lot to say, and it tends to be deep and challenging stuff. I'm also autistic (aspie here) so I'm very honest, and that makes it hard for other people, including my wife :)

Yeah, my latest psychiatrist said to me "Don't worry, I deal with complex cases. I'm not afraid." when I first spoke with him for a free quick chat. My psychologist, who knows me best, won't quite say it but I imagine I'm one of the more challenging patients for him to treat. But I think he also learns more about the human brain from me than from most other patients.

As for it being hard to follow all this, no need to excuse yourself at all. I realize my shit is pretty fucked up and asking for help here is a bit wishful. Whatever input I get here, I don't take it as gospel.

You've been kind and supportive and that's wonderful. I went on a forum yesterday for one of my conditions and people starting saying I was making up my story and that I was a troll. They couldn't fathom someone having all my shit, I guess, which I found really bruising emotionally. The only person there who understood me fully was another aspie. I actually find the most common ground with aspies, though believe it or not I didn't know I was an aspie until 6 months ago. I always joked about being on the spectrum and when I finally researched it, I knew. Brought it to my old psychiatrist and her response was "Yeah, that sounds about right. Why does it matter to you?"

Unfuckingbelieveable.
 
I

Italia2020

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I have cyclothymic and severe depression, GAD, Pure O OCD and PTSD. I also have a slow metabolism so a small dose of a med for others has the effects of a larger dose for me.

I’m on Lamictal and I’m not tolerating it. Major fatigue issues since I started taking it 7 months ago. It’s awful.

My doc told me two weeks ago to go from 50mg to 100mg to manage my mood shifts and I was bedridden. Went back to 50 and now on 25 as per the doc.

My fatigue doctor said I need to drop Lamictal.

How can I slowly taper off 25mg? Can I dissolve a tablet in water and use a syringe? Never tried dissolving Lamictal tablets before.

Psychiatrist said we could try Latuda after Lamictal leaves my system. would that take a week or two to flush out after stopping the drug?

Challenges figuring out the replacement med. I took Abilify years ago and it caused me to have Restless Leg Syndrome which I manage with another med called Neupro. My neuro told me Latuda could worsen the RLS and might cause Parkinson’s.

I asked my psych about Depakote and he said he doesn’t recommend it cause it could cause a lot of side effects.

i took Lithium for 20 years 900mg and I was always depressed on it. Tapered off it last year with my old psychiatrist over 5 months and then went on Lamictal. Depression largely went away on Lamictal but the fatigue is devastating and my mood is volatile cause I’m on a low dosage.

My new psychiatrist isn’t sure what else he’d recommend for mood stability.

Any suggestions from people who didn’t tolerate Lamictal or Lithium well, and aren’t good fits for Latuda or other antipsychotics?

I’m a little confused about his issues with Depakote. We did genetic testing with Genomind and based on the results the psych said the best option for me is Lithium but like I told him, I was always super depressed. He then said he only prescribes Depakote to patients with an ANK3 genetic variation and since I don’t have one, he said that med could cause tons of bad side effects.

I’m very hypomanic today and it’s not good. Something’s gotta give but we haven’t figured out the next med to pursue for mood stability.

I also take 5mg Lexapro and definitely need something to stabilize my mood.
I’m in the situation as you I am very sensitive to meds and right now have been through so many with no relief. My doctor started me at 12.5 of lamictal because how sensitive I am when I went to 25 I was severely fatigued and dizzy. I think they are going to try me on abilify next but I hope that don’t make my severe anxiety worse.
 
W

WordsInfluence

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I’m in the situation as you I am very sensitive to meds and right now have been through so many with no relief. My doctor started me at 12.5 of lamictal because how sensitive I am when I went to 25 I was severely fatigued and dizzy. I think they are going to try me on abilify next but I hope that don’t make my severe anxiety worse.
what’s very frustrating for me is that my new fatigue doctor told me about the metabolism thing just last week. No doctor had told me before and I’ll bet I’ve been overmedicated a ton. And lots of doctors had told me about my bilirubin count that shows the metabolism issue and they all said it’s nothing to worry about at all. Negligent assholes. What a joke.

be careful with Abilify and other antipsychotics. From my research and my neurologist’s input Abilify is what caused my Restless Leg Syndrome. I took it for 5 months and 6 months later I started having this syndrome. It was very very bad until we found a med to manage it. the med I use is mainly for Parkinson’s.
 
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Italia2020

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Yep that’s my problem with meds now. one is that they are not working like they used to and second I can’t find one that helps because as soon as I raise the dose all hell breaks lose and the baby amounts I’m taking don’t help the issue. Ok thanks for letting me know about abilify! Did it help at all your depression and Gad?
 
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Italia2020

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Yep that’s my problem with meds now. one is that they are not working like they used to and second I can’t find one that helps because as soon as I raise the dose all hell breaks lose and the baby amounts I’m taking don’t help the issue. Ok thanks for letting me know about abilify! Did it help at all your depression and Gad?
Are you still on it?
 
W

WordsInfluence

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Are you still on it?
abilify? No. I took it for 5 months on top of Lithium and Prozac and I didn’t notice any extra benefit but to me it’s too many meds at once. I trusted my former doc and she sucks. It gave me RLS, great. Even just an antipsychotic, I think, can cause RLS or Parkinson’s. It depends on the dosage and the specific med. Ask your doc and do some reading. I never trust my docs outright anymore. Whatever they advise, I do my own research and if I have doubts, I talk to them about it. Sometimes they claim it’s all internet nonsense and I’m like,“no, it’s on the Mayo Clinic website.” In some extreme cases, I fire them and find a new doc. But usually I convince them to adapt to something that I feel comfortable with.
 
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Italia2020

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Yes they always say don’t read what the internet says but I do my own research anyways. At this point I feel like a guinea pig. I switched 3 docs in 1 year and I think this last one I have now is the worse.
 
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