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Snek

Snek: my daughter's withdrawal

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Gridley

I've brought your post to the attention of the other mods so they can address your concern.  

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Snek

Thank you, Gridley. I've been doing some more research into this and I think that it is possible she is having mild SS. She and I just talked, and she said that it was after her Fluvoxamine was increased to 100mg from 50mg that the tremor got bad (it was only slight before). This was in the beginning of January 2018. Tremor is listed as a common side effect of Fluvoxamine, and we were hoping it would go away. It did go away, but only when we reduced the Bupropion. There is no tremor now...only the GI issues and fatigue...and she has been having issues with body temperature regulation (feeling colder than she normally does - she always used to prefer the cold and now she gets chilled).

 

I am feeling so angry at the doctor who upped her dose of Fluvoxamine, and then prescribed Gabapentin to deal with the restlessness. The doctor should have noted the tremor and suspected SS instead of prescribing another drug. I so wish I knew then what I know now. I had heard about SS, but never thought she had any of the symptoms. Didn't know there could be mild unnoticed cases. Gah!

 

So now here we are. To taper more quickly or not. i have reached out to all of her doctors, but am sharing her in case anyone has any insight. Not much in the way of scientific literature except I did read that mild cases of SS can be under reported, and that mild cases can turn into life threatening cases.

 

Snek

 

 

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Snek

Got a reply from the Psychiatrist. He hears what I am saying and understands my concern, but pointed out that her overall symptoms do not really point to SS and can can be explained by other things (in a nutshell). He's not suggesting she stop cold turkey at all, though he thinks we should address tapering the Fluvoxamine in the future. 

 

I know that people are not supposed to taper two meds at once. Does alternating med tapers count as tapering two meds at once? I mean, if she holds (and doesn't have any extra symptoms) for a month where she is with Bupropion and Gabapentin, could she then begin to taper the Fluvoxamine for a while? 

 

Thanks,

Snek

 

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Altostrata
On 11/18/2018 at 11:33 PM, Snek said:

My fear is that I am going to keep her on a poison longer than she needs to be on it, unnecessarily. At the same time I fear that tapering too quickly will make her worse. ...

 

Our dilemma here in a nutshell.

 

As far as your own "psychiatric diagnosis": Everybody can be diagnosed with something!

 

On 11/19/2018 at 3:00 PM, Snek said:

More confusion - the pharmacist will not stand by making a liquid at home. They do not recommend cutting Bupropion, even the immediate release she is on. All of her doctors know we have been cutting this. Anyway, I am off to pick up form the compounding pharmacy now.

 

Snek

 

It's a territorial thing. Pharmacists generally do not want patients to be improvising their own drugs. We have many, many people here making their own liquids. Just ask for an oral syringe at the compounding pharmacy without the explanation. It's handy to have a 5mL and 1mL oral syringe on hand.

 

18 hours ago, Snek said:

Thank you, Gridley! One worry down...and a new worry now - 

 

I am reading about Serotonin Syndrome and worrying that my daughter has this...but I am hoping that my worry is unfounded. She does not have most of the symptoms, but she does have the nausea and she DID have the tremor before we tapered down from the Bupropion. Since the treatment for Serotonin Syndrome would be stopping her drugs cold-turkey, I would not this to be the case...but I am also worried that if she does have SS then she could be hurt more? Everything I've read says that SS occurs within hours of taking a new drug or updosing. She did not start getting nausea until after being on this drugs for around a year. The tremor began pretty soon after, though, but this was listed as a side effects of her meds. 

 

Somebody, please tell me that I am overreacting here.

 

Snek

 

This is a concern when people are taking bupropion with fluvoxamine. Your daughter has tapered buproprion to a low level where serotonin syndrome is less likely. At this point, it sounds to me like your daughter is overdosed with gabapentin.

 

I would stay the course with the gabapentin taper. Don't allow your anxiety to cause you to do things haphazardly.

 

17 hours ago, Snek said:

I am feeling so angry at the doctor who upped her dose of Fluvoxamine, and then prescribed Gabapentin to deal with the restlessness. The doctor should have noted the tremor and suspected SS instead of prescribing another drug. I so wish I knew then what I know now. I had heard about SS, but never thought she had any of the symptoms. Didn't know there could be mild unnoticed cases. Gah!

 

 

You are correct, that doctor should have known about the interaction between bupropion and fluvoxamine. He should also have been alert to signs of overstimulation from the fluvoxamine, this is a known risk of SSRIs in young people. When you have a chance, you might write a letter of complaint to the California Medical Board with a copy to the doctor.

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Snek

Just a bit of an update - 

 

For the past week, since the day before Thanksgiving, my daughter has only experienced the slightest of occasional nausea when hungry. No vomiting. Otherwise, her only other symptom is the fatigue (which may be from her severe depression, medications, EBV, or all the above). Last night/early this morning she woke up in the middle of the night for the first time in over a week with nausea. She ate a few cookies and it went away. She is now back in bed sleeping after a rough night of insomnia. She was supposed to go to an early morning therapy meeting, but was unable to make it. I wonder if her anticipation for this meeting, and having to wake up early, contributed to her insomnia. She has her first depression group meeting tonight, and will be going to that. 

 

Not much of an update, but there it is. In 6 days she has an appointment with an out-of-network doctor who specializes in psychiatric medication and withdrawal.  

 

Snek

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Snek

Update - 

 

Today I took my daughter to a new and highly recommended psychiatrist who specializes in antidepressant withdrawal. He believes that the Fluvoxamine is causing her symptoms (including recent weird lab work - she is beginning to suffer some serious health consequences to her immune system and thyroid at this point) and that it is important to her health to stop the Fluvoxamine. Starting tonight, she is switching from 100mg extended release to 75mg immediate release (25mg in the am, 50mg in the pm). Assuming she has no problems with this, then next week she will drop to 50mg (25mg in the am, 25mg in the pm). If she experiences any withdrawal symptoms during this taper then we will stop and take the taper more slowly. Most people seem to be able to cut their Fluvoxamine in half without real problems (it gets a LOT harder after this point). Once she is safely at 50mg for a while (a month or so), then she will begin the slow 10% per month taper. 

 

Please think good thoughts for my daughter...that she will be one of the people who are able to cut their Fluvoxamine in half over two weeks without real problems.  

 

PS She is no longer having nausea and vomiting - getting the Bupropion from the compounding pharmacy instead of cutting it up seems to have helped in this regard. 

 

Snek

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Altostrata

Good to hear, Snek. 

 

Yes, it's true, some people are taking a dose that cause oversaturation and can make a larger initial decrease and still maintain an adequate level of the drug. If a person is suffering serious adverse effects, it can be worth it to take the risk of a larger cut and faster taper.

 

Please let us know how your daughter is doing.

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Snek

It's been a week since my daughter cut her Fluvoxamine dose from 100mg to 75mg and so far so good (knock on wood). Nothing to report as to any changes. Tonight she cuts it to 50mg (and then we do slower 10% taper after that). I hope this goes well. What stinks is that she will also be changing manufacturers again because the previous company stopped making Fluvoxamine. I suppose that switching manufacturers at the same time as a dose change is not as bad as switching manufacturers when you're wanting to NOT change a thing. 

 

Anyway, I am SOOOOOO glad that we switched my daughter back to the Fluvoxamine instant release formula last week to begin her taper. Kaiser just informed us that the 100mg extended release is out of stock and they won't have it for several weeks! I can't imagine how stressed out I would be right now if she was relying on that particular brand/release of medication! Her old psychiatrist (who apparently did not get the memo that my daughter switched psychiatrists months ago) sent an email that basically said, 'Oh well, you can't get your Fluvoxamine...I am calling in Zoloft for you!' Never mind the fact that Zoloft was the first SSRI my daughter tried and had a bad reaction to it!

 

Some Kaiser doctors are awesome. Some...not so much. 

 

Snek

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Snek

Nausea has returned off and on the last couple of days, and last night she had a headache. I hope that these are unrelated to the Fluvoxamine taper 4 days ago (she went from 75mg to 50mg - I know this is a large cut but it is necessary as Fluvoxamine itself is making her sick). *Fingers crossed*

 

Snek

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Snek

Time for an update!

 

It's been a little over a month since my daughter tapered Fluvoxamine from 75mg to 50mg. Up until 4 days ago, we saw no real changes. Four days ago, nausea and vomiting returned. The last 2 days she's only been having the nausea off and on. I don't know if this is from withdrawal, the Fluvoxamine itself, or something unrelated. So frustrating.

 

At first we thought it might be a side effect of the NAC that she started a few days before becoming nauseous. Her Psychiatrist wanted her to try NAC for the intrusive thoughts that were returning as Fluvoxamine was tapered. But now it's been long enough (she stopped taking it on 4 days ago) that I don't think that it's the NAC.  

 

She is extremely irritable right now because she does not feel well and is frustrated. I am getting ready to go into her room soon to see if I can get her to go on a short walk around the block (as all the doctors she sees agree that she needs to move a little and not just stay in bed 24/7). This is not going to be easy... 

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ChessieCat
1 hour ago, Snek said:

Four days ago, nausea and vomiting returned. The last 2 days she's only been having the nausea off and on. I don't know if this is from withdrawal, the Fluvoxamine itself, or something unrelated. So frustrating.

 

At first we thought it might be a side effect of the NAC that she started a few days before becoming nauseous. Her Psychiatrist wanted her to try NAC for the intrusive thoughts that were returning as Fluvoxamine was tapered. But now it's been long enough (she stopped taking it on 4 days ago) that I don't think that it's the NAC. 

 

From https://www.webmd.com/vitamins/ai/ingredientmono-1018/n-acetyl-cysteine

 

"It can cause nausea, vomiting, and diarrhea or constipation."

 

From https://www.rxlist.com/acetylcysteine-solution-side-effects-drug-center.htm

 

Common side effects of acetylcysteine solution include:

  • nausea
  • vomiting

 

The fact that it is easing seems to indicate that it may be the NAC.

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Snek

I totally agree with you, ChessieCat! The Psychiatrist is not convinced, so I suggested that we wait until she's had no nausea for a week and then try again. She's been eating normally again since yesterday, so fingers crossed! I'd love it if NAC could help her so I'm willing to keep an open mind. Apparently it might help with the intrusive thoughts that come with OCD. Psychiatrist suggests she take it with meals next time we try. At least NAC leaves the body quickly and with no withdrawal problems...unlike certain other substances we all know about (unfortunately)!

 

  

 

 

 

 

 

 

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Snek

Just figured I'd give a quick update - 

 

Today my daughter began taking Lamictal 12.5mg as a hopeful bridge in her Fluvoxamine taper. Now that she has cut Fluvoxamine in half, some of her OCD symptoms have gotten worse, especially the intrusive thoughts, so her doctor wants to see if Lamictal can help as we continue the Fluvoxamine taper. It's important she get off this Fluvoxamine because it appears to have been the cause of many of her health problems. 

 

Fortunately, the nausea is gone. It's only her depression and OCD that is crippling at this point. :(

 

Best wishes,

 

Snek 

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Altostrata

Thanks, Snek. Please let us know how your daughter does on 12.5mg Lamictal with 50mg Luvox. At low doses, lamotrigine is a fairly benign drug, as psychiatric drugs go.

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Snek

*Sigh*

 

She got the "Lamictal rash" and had to stop taking it. At least we knew enough to stop the drug immediately so that it did not progress to Stevens-Johnson syndrome. 

 

Looking in to Transcranial Magnetic Stimulation for "treatment resistant depression". We really want to stabilize her a little emotionally before we drop the Fluvoxamine again, yet the Fluvoxamine continues to make her sick (though nowhere near as bad as when she was on the higher dose).

 

The  roller coaster continues...

 

Attn: Altostrata 

 

 

 

 

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puthappinessfirst

Snek,

 

You are a great mom. And your daughter is very strong. 

 

If she ever wants to talk, she can send me a message. I am only a handful of years older than her. She will get through this! 

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Snek

Not sure what to do - 

 

My daughter saw her out-of-network Psychiatrist yesterday. He wants her to try Memantine for OCD intrusive thoughts as she tapers from Fluvoxamine. I asked her in-network Psychiatrist for his thoughts (and a Rx if he agreed with the other psychiatrist) and he said he would not prescribe it because the studies that show it might help with intrusive thoughts are small and limited, and he is concerned about how my daughter is sensitive to drugs (which I appreciate). I am leaning toward her not trying this new drug and am hoping that out-of-network psychiatrist is not upset by this. Can anyone offer any insight as to Memantine and/or dealing with two doctors who disagree?

 

Thanks,

Snek

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puthappinessfirst

Hi Snek,

 

Just my opinion, but adding a new med to the mix doesn't sound safe. Your daughter is, as you guys have realized, quite sensitive to meds. Heaven forbid, you try this new med and she gets an adverse reaction. Then you're dealing with her current withdrawal and then possibly adverse reactions. You definitely don't want to rock the boat.

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Snek

puthappinessfirst

I agree with you. We're going to hold off on new meds for now...especially now that Kaiser has agreed to pay for TMS therapy! 

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puthappinessfirst

That's great! I also want to try and get Blue Shield to cover that for me in the future. 

 

The Bay Area has a lot of great, non invasive treatments to utilize. 

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