Scared of TD and Akathisia - Sensitized

[Dee22]

I need someone with a good understanding of SSRIs and receptors to help me.

I'll make this short, I have depression/anxiety and went through a severe paxil withdrawal years ago. About 3 years ago, I reinstated 5mg of Celexa, while on Celexa, after a couple years, I was showing minimal signs of TD or dystonia but only upon waking up in the mornings which was weird. I stopped the medication and had little withdrawals, tried to reinstate after 9 months of being off and my body instantly rejected the 5mg dose I used to take and I have lived with akathisia for 4 months (mostly subjective, inner fear/torture) - stopped the medication immediately. That has mainly gone away and I'm currently on 12.5mg of lamictal and .325mg Klonopin to stabilize from the reaction. The TD symptoms have gotten worse and appear mainly in the morning upon waking or trying to fall asleep (I think maybe the lamictal made them worse?) I have been left with level 10 tinnitus and can not function. My doctor wants to try Nortriptyline as it can lower it but I'm scared I will get akathisia and or from it like I did with the SSRI. I think I got akathisia from the SSRI because my receptors were downregulated and I must have been in some state of mild withdrawal when I tried to reinstate the Celexa. 

I'm looking for any positive scientific reasons or personal accounts as to why the nortriptyline might be safe for me to take and why the SSRI turned on me. 

[jt07]

It's VERY highly unlikely that you got TD from SSRIs. TD is usually associated with dopamine antagonists. While there is at least a weak feedback loop between serotonin and dopamine, it is very weak compared to the dopamine antagonists that have the potential to cause TD. Note I said potential. Even with the dopamine antagonists TD is not guaranteed. 

My advice is to talk to a doctor who has seen TD and get a proper diagnosis. A knowledgeable psychiatrist or neurologist will probably your first port of call.

[Dee22]

52 minutes ago, jt07 said:

It's VERY highly unlikely that you got TD from SSRIs. TD is usually associated with dopamine antagonists. While there is at least a weak feedback loop between serotonin and dopamine, it is very weak compared to the dopamine antagonists that have the potential to cause TD. Note I said potential. Even with the dopamine antagonists TD is not guaranteed. 

My advice is to talk to a doctor who has seen TD and get a proper diagnosis. A knowledgeable psychiatrist or neurologist will probably your first port of call.

Thanks JT, you're absolutely right about it being rare, I kind of consider myself that 1% in regards to sensitivity which I probably why I got akathisia from a single dose of celexa (or it could have been serotonin toxicity). All I know is that whole body was burning, my muscles shaking and I had extreme terror for no reason. I have seen a lot of doctors already and they have given the worse advice compared to the research I've done. They are just not careful enough and group me into the percent of most people who are fine on these medications without doing any extra research on pharmacology, etc, thinking I'll be just fine. I was on the surviving ADs website and as you know they are very "anti-medication" but if I have a chance of reducing my tinnitus, I really need to try. At this point, I'm actually more scared of akathisia than I am of TD. Also wondering if I should try a different mood stabilizer like Trileptal which has shown some efficacy for tinnitus, might be safer in terms of akathisia. 

Edited April 5, 2017 by Dee22

[notloki]

With only one serotonin effecting drug at play serotonin toxicity is not really on the table. The dread feeling sounds like akathisia. 

[Dee22]

5 hours ago, notloki said:

With only one serotonin effecting drug at play serotonin toxicity is not really on the table. The dread feeling sounds like akathisia. 

Yeah, it was akathisia in all of it's glory, luckily my legs were not effected and it was purely subjective except for some arm burning but nonetheless, it was sheer mental torture. I'm still having a hard time getting rid of the residual dysphoria. Small doses of lithium orotate seem to help. My main goal is to combat the hyperacusis and tinnitus which is why I would like to take the Nortriptyline. I'm trying to not scare myself out of taking it and the one thing I can't understand is why this won't cause akathisia but an SSRI will. I've obviously built a tolerance to SSRIs after stopping for 8 months (the first time I ever took one it was very well tolerated) - to me it sounds like a reinstatement gone bad during withdrawal (even though I didn't feel like I was in withdrawal). So if it's receptor downregulation, I might be screwed and have same reaction with the Nortriptyline (unless it doesn't touch the same receptors). Does anyone have any info about this? Doctors seem to think everything is safe and the people on the Surviving ADs site treat everything like poison. Or maybe any cases of people being able to reinstate something else during SSRI withdrawal. You guys have been really responsive, I really appreciate it, just suffering every day, really need to be on meds but too scared to try anything.  

 

[notloki]

Akathisia is generally effectively treatable if you want to stay on the drug and stops after you stop the med causing it so I would not waste much time worrying over that side effect.

[Wooster]

 

Please be careful with the lithium orotate, especially with Lamictal. They both get removed from the body by your kidneys, and taking both at the same time, especially if you haven't cleared it with your prescriber who knows your health best, increases the risk of causing kidney problems.

Nortriptyline is a tri-cyclic antidepressant. TCAs are both norepinephrine and serotonin reuptake inhibitors, but more pronounced norepinephrine reuptake effects. They also have some dopamine inhibiting effects.

@Dee22 It sounds like it's time to stop reading that particular website and develop a relationship with a prescriber whose training you respect and opinion you trust.

[Dee22]

Thanks @Wooster that was informative. I actually don't even want to be on the Lamictal and I also wonder if it's causing T spikes after I dose. About 2 hours after taking it, my ringing is louder then settles down about an hour later. The Lamictal is also super low (12.5mg) but thanks for letting me know, I didn't realized this mixture could effect the kidneys negatively. 

I found this and it seems to be inline in regards to what happened to me (except for me, it was more extreme and resulted in akathisia). Made me think about Seroquel. I also saw some people were treated with Zyprexa. With the concerns I started in regards to EPS, seems dumb I would even bring up antipsychotics. 

Quote

Dr. Rif El-Mallakh, head of the Mood Disorders Clinic at the University of Louisville, Kentucky, published concern about "loss of response" (sometimes called "Prozac poop-out", or more Greek: antidepressant tachyphylaxis) to antidepressants several years ago: "Can long-term antidepressant use be depressogenic?"El-Mallakh Another of his papers on antidepressant-associated worseningEl-Mallakh,b includes an excellent literature review on this entire subject. However, even Dr. El-Mallakh seems to stop short of saying that antidepressants might permanently worsen a person's mood disorder. One of the only published descriptions of this concern I've found, though I've heard it voiced many times (generally by psychiatrists with a lot of clinical experience and willingness to speak out against prevailing beliefs), states directly my concern: namely that antidepressants could make people "treatment-resistant", even when they started out with a good response, and even when they started out looking "unipolar", not bipolar.Sharma 2006

I think I've seen at least one such case in my practice, which was so striking I published the woman's experience as a case report.Phelps This 60-year old woman had done very well on sertaline (Zoloft) for 7 years, for a recurrence of depression she'd had numerous times before. She then developed severe agitation and insomnia in the absence of any factor we could find to account for this change, and these symptoms only stopped after the sertraline was tapered off. But a year later her old depression was back again, so on her own she tried a quarter-dose of the sertraline, and improved dramatically that same day; so she repeated that dose the next day and called me to say how well she was doing. I said that this was nice to hear but would she please come see me tomorrow, by which time, after one more 25 mg dose, she had the same severe agitation for which she had been referred a year earlier, including suicidal thinking. Of course we stopped the sertaline, but it took a month for the agitation to again taper off. We added a very low dose of lithium to the Seroquel she had improved on earlier, and her depression lifted. She ultimately added tap dancing to the activities her excellent therapist had encouraged her to pursue. She remains well, nearly symptom-free, 3 years later (5/2006).

 

[Wooster]

I did a little research and it does seem there is a known phenomenon of SSRI-related movement disorders, notably akathisia. It's rare, but not unknown, and seems to occur more often in elderly patients and people who are also taking antiepileptic drugs at the same time. The studies were really limited in their ability to specify a causal relationship for many reasons. And the specific SSRI taken is more or less likely to contribute depending on the relationship between serotonin and dopamine, as well as potentially norepinephrine pathways in the brain. http://www.psychiatrictimes.com/articles/movement-disturbances-associated-ssris

It's reasonable to talk to your care team about medication approaches so that you can get fully personalized information that's appropriate to your situation.

You've seen the Phelps page about lithium orotate, right? He's talking about ultimately using lithium for preventing Alzheimer's, but prefers lithium carbonate which requires a prescription, because it comes with kidney and thyroid monitoring, rather than winging it with a form of lithium that hasn't been as well tested. And it wasn't as well tested because preliminary studies in rats indicated higher degrees of toxicity compared to lithium carbonate:
 

Quote

Lithium orotate has received only minimal evaluation in terms of its safety. One 1979 study in rats found it more harmful than the conventional form (lithium carbonate) to the animals’ kidneys. ^Smith That study seems to have brought an end to scientific study of the orotate approach. But it used doses of lithium orotate that were  roughly equivalent to the full adult human dose (e.g. 1500 mg in a larger adult).

 

[Dee22]

Thanks @Wooster I had similar findings in my research. They also say there is high risk of akathisia when reinstating an antidepressant after prolonged withdrawal has kicked in. I literally felt like I had zero dopamine while it was in full force. None of my doctors understand about any of this and I just go in there being the one that educates them. You can't blame them really, because 98% of patients just don't have these reactions to SSRIs so they've never encountered it nor know how to deal with it. I'm just left with looking at studies and other anecdotal reports and how symptoms were combated successfully. When doctors don't have the answers, many of them just aren't will to put in the research.

[melissaw72]

FWIW ...

https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm552418.htm?source=govdelivery&utm_medium=email&utm_source=govdelivery

[Dee22]

7 hours ago, melissaw72 said:

FWIW ...

https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm552418.htm?source=govdelivery&utm_medium=email&utm_source=govdelivery

Thanks for looking out! I actually saw that as well. Not too keen on taking other drugs with other side effects to fix the side effects of other drugs but at least there is some hope if I do decide to take something and things go haywire. 

[notloki]

On 4/12/2017 at 4:34 AM, melissaw72 said:

FWIW ...

https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm552418.htm?source=govdelivery&utm_medium=email&utm_source=govdelivery

That's great and all but the PI is not out so I will guess it has activity at D2 and looks like an AAP. Any AP will suppress TD but it does not treat it. This is often the treatment for TD, a low dose of an AP. Hopefully this new pill works by another route.

[melissaw72]

I have no idea how it works, but it was approved by the FDA so it must do something.

[Dee22]

4 hours ago, notloki said:

That's great and all but the PI is not out so I will guess it has activity at D2 and looks like an AAP. Any AP will suppress TD but it does not treat it. This is often the treatment for TD, a low dose of an AP. Hopefully this new pill works by another route.

I don't know what an AAP is or an AP. Ultimately, any TD or Dystonia that does not stop after some time once the offending medication is removed, is basically permanent - so it's brain damage and nothing can really fix it, but it can be covered up with medication you would have to stay on for the rest of your life. My hope was to take Nortriptyline in hopes that it would lower my tinnitus and also help with the depression (of all the ADs this one has been shown to lower tinnitus the most). With that said, there's no guarantee that it will even work, and in turn, I also risk worsening a very mild movement disorder. Everything tells me it's too risky since it's serotogenic and if I got a movement disorder from 5mg of Celexa, I'm playing with fire - unless the issue is that I have grown intolerant only to SSRIs after stopping for almost a year - this has happened to others. If that's the case, I may or may not react fine to the Nortriptyline. Doctors dispense these drugs like candy but when something goes wrong, they can't answer any questions - you guys seem to understand pharmacology more than they do. My question was it's obvious you can grow intolerant to an SSRI even after responding well to it for years but does that make me now sensitive to all serotogenic acting medications? No one knows and the only way is to experiment on myself but that comes with a big price.    

I may have to look into non serotogenic treatments for the depression.

[notloki]

People can burn out on one SSRI but find others that work so I think not.

[notloki]

AP-Antipsychotic

AAP-Atypical Antipsychotic

[notloki]

Movement disorders are mostly dopamine based, if serotonin is involved it is a minor player.

[Dee22]

SSRI movement disorders are characterized by serotogenically mediated blockage of dopamine in the basal ganglia. It's rare, but I was just one of the unlucky ones. TD and dystonia are also listed as side effects for SSRIs as well as tricyclics.

Thanks everyone, just a little freaked out. I've been so unlucky lately. To have gotten the akathisia and two months later the horrible hyperacusis and tinnitus. Just want my life back.