Claire8080- can't get off Depakote (and issues with other meds)

January 27, 2023

AD issues 2022 Jan.docxAD issues 2022 Jan.docxHi, My name is Claire and I'm struggling and stuck trying to taper off depakote because I have developed macrocytosis, am losing hair, and my vision and memory are deteriorating. (I am hoping to taper off all meds but started with this one. I admit I did not realize what this involved, I did no research until it was too late.)

I'm on the lowest dose that my doctor will give me (the lowest she can, she says) I take one 125mg delayed release tablet at bedtime but (because of its half-life I'm guessing) by mid-afternoon the next day I am suffering withdrawal symptoms that become worse and worse until I take the next tablet at night. I think that's the only reason I'm getting sleep.

I tried to get her to prescribe Depakote sprinkles so I can maybe count beads, but instead she is suggesting that I cut the delayed release tablets. I know this is more than unwise and I just can't bring myself to even try it, I even told her I didn't think that was recommended but she said it would be okay in this case!? Is it possible I could halve the tabs and take one half at midnight and one half at noon? Would that be a huge mistake?

In the meantime am I kindling myself every day?

Any advice would be appreciated more than I can express.

January 30, 2023

Welcome, @Claire8080

It sounds like you have a doctor problem as well as a tapering problem. See Tips for tapering off sodium valproate and valproic acid (divalproex sodium, Depakote, Depakene)

Depakote DR must be taken twice a day, or you risk withdrawal symptoms between doses. If you cut a DR tablet, it probably will become immediate-release. You'll still have to take it more than once a day.

Why does your doctor refuse to prescribe Sprinkles? Does she have to pay for it?

What times o'clock do you take each of your drugs, with their dosages?

January 30, 2023

Yes, I think I have a doctor problem.

The first was the psych nurse that prescribed the divalproex and lamotrigine in the first place when I was depressed (not Bipolar) by some difficult life circumstances but was unable to tolerate any of the various SSRIs we tried.

And now my GP, who has been my doctor for more than 20 years is a problem. I'm not sure why she won't prescribe the Depakote sprinkles, I believe it's because she is not in favor of me tapering off of any of my medications because she doesn't know how to do it. The first time I told her I would like to stop I expressed that I was losing hair and having vision problems, and that I had researched side effects of depakote and that these were common ones. She said that if I was feeling okay I should keep taking them. Then I asked her what would happen if I just stopped taking the divalproex and the lamotrigine and she simply said "I think you would feel pretty bad." Then she implied that I was "committed" to taking them forever.

But after blood tests revealed that I had macrocytosis and I got really worried she agreed to drop me from divalproex 250ER to 125DR once a day and it's been all downhill from there. When I said I felt okay until the afternoon she suggested that I cut the DR tabs and take one in the middle of the day (I take the 125mg around 11PM) I said I'd read that that was a bad idea and that people had had success with tapering using the sprinkles she said those weren't "in my formulary" and that's when I should have said "so what, I want them anyway!"

Currently I take these medications at bedtime (11PM)

divalproex DR 125mg

lamotrigine 100mg

propranalol ER 120mg

alprazolam 1mg

estra/norex hormone repalcement

as needed during the day I take propranolol 60mg tabs and lots of advil

If, as she suggested, I cut a 125mg divalproex and take it during the day I'm going up not down, I tried taking a quarter of one this way and it definitely immediately released!

I spoke with a compounding pharmacist and he said I either need to taper with sprinkles or immediate release powder, but of course I would need the doctor to write a prescription for that. I see her again in ten days, but I don't want to keep harming myself, should I see a psychiatrist right away (I have an appointment with one in March)?

Meanwhile I am in limbo, I don't want to have a seizure or kindle perpetually or otherwise do severe damage to my CNS, if it's not already too late. Any suggestions could be lifesaving at this point. Thank you

February 2, 2023

On 1/30/2023 at 3:36 PM, Claire8080 said:

and that's when I should have said "so what, I want them anyway!"

That is correct. You might to call her back and say calmly and firmly that you have decided to pay out of pocket for Sprinkles, and it is your intention to minimize the drug that is causing you health problems.

There is no reason to put a psychiatrist on your payroll, any doctor can prescribe these drugs, including custom compounded drugs. What you need is a doctor who would help you.

You may also need custom compounded dosages to go off lamotrigine and alprazolam.

You may need to have a candid talk with your doctor of 20 years, tell her that the drugs are causing your health to deteriorate, and ask for a referral to another primary care doctor.

February 3, 2023

On 2/2/2023 at 12:56 AM, Altostrata said:

That is correct. You might to call her back and say calmly and firmly that you have decided to pay out of pocket for Sprinkles, and it is your intention to minimize the drug that is causing you health problems.

There is no reason to put a psychiatrist on your payroll, any doctor can prescribe these drugs, including custom compounded drugs. What you need is a doctor who would help you.

You may also need custom compounded dosages to go off lamotrigine and alprazolam.

You may need to have a candid talk with your doctor of 20 years, tell her that the drugs are causing your health to deteriorate, and ask for a referral to another primary care doctor.

Thank you, I appreciate you so much. I will do some rehearsing, calmly state my needs and hold my ground. And I’ll pass on looking for a psychiatrist!

February 12, 2023

I was able to get my doctor to prescribe depakote sprinkles (delayed release 125mg) to hopefully allow me taper off my 125mg delayed release tablets.

For the last two weeks I have been taking one tablet at 11PM and then attempting to cut and take 1/4 of a tablet mid-afternoon when I started to feel interdose withdrawal (I was just taking one 125mg a night instead of two doses a day). I've had varying results because cutting the tablets is very imprecise and the release is immediate and a half a table was too much and sometimes 1/4 is not enough. So some days it works, some days it doesn't.

Now I have 60 125mg capsules I can split, and at least 60 125mg tablets and no idea how to spread doses across the day in such a way as to not suffer interdose withdrawal, kindling or overdosing myself. But of course in such a way that I can eventually end up at 0.00!

I am getting a scale, the Gemini 20 is the one I see mentioned the most, and what I need help with is calculating a schedule. Any help would be appreciated, I wish I'd paid more attention in my chemistry classes!

Thank you

February 13, 2023

See

Depakote Sprinkles dosing is twice a day -- 12 hours apart is a good guess.

February 13, 2023

Right now I'm taking one 125mg delayed release divalproex tablet at 11PM and ~30mg of a cut tablet at 3PM (which acts like an immediate release). So in total I'm taking 150-160mg in a day. Should I try to even up these doses before tapering by taking gradually increasing the afternoon dose using sprinkles while decreasing the night dose until I'm taking two ~75mg doses, one at 11PM and one at 11AM? Then hold like that until I'm sure I'm stable before starting a small slow taper (of say 5%) from both the night and day doses?

February 13, 2023

How long has it been that you've been taking Sprinkles? Has your symptom pattern changed?

February 13, 2023

I saw the doctor Friday and just picked up the sprinkles today. Not sure where to jump in with them. Wondered if I should just outright switch the 125mg delayed release tablet at night to the 125mg sprinkles but I'm not sure how to split up the dose into two doses (11AM and 11PM) since I've only been taking one tablet at night (and then a small tablet fragment in the afternoon). Would it work to slowly switch the srinkles into two even ~75mg doses by shifting a little over from night dose to day dose a little bit at a time? I'm afraid to rob too much from Peter at night and pay too much to Paul during the day, so to speak, though I eventually want equal doses day and night.

February 13, 2023

How about taking half a 125mg tablet (62.5mg) with 12.5mg Sprinkles twice a day?

February 14, 2023

Aha! That sounds like a good plan! My scale has not arrived (with my little spoons and capsules) but I should get it before Thursday (I should have just gone and bought one and I may anyway). I will have a long weekend - 5 days before I have to work, and my sister will be here to support me. But it should make things better because I have been doing all this imprecise dosing and interdose withdrawing. I'll let you know how it goes. Thank you for helping me. You are a blessing.

February 18, 2023

Hello. I got my scale today and started dividing my 125mg (DR) divalproex sprinkles into 12.5 mg (.025grams) and 62.5 mg (.125grams) capsules. I know it's a lot of doses but I can achieve a 10% reduction of the 125mg by spreading them out through the day like this to start:

11PM 62.5 + 12.5 for 75 mg overnight

11AM add 12.5 for 87.5 mg

3PM add 12.5 for 100 mg

7PM add 12.5 for 112.5 mg a/day total

Maybe I'll need to shift the times around some

If that is manageable I can hold there for a month or so then drop 12.5mg off the 11PM dose to be at 100mg a day- very close to 10% less of the last dose.

Am I overdoing it? That's a lot of dividing and dosing but I am so afraid of going too fast. But is this way too slow?

I've cut out caffeine and I'm trying to eliminate sugar and processed food, I'm pretty active at work and I am trying to everything within my power to rid myself of this drug.

Today was the first day taking the smaller doses. I think it really helped the interdose withdrawal symptoms. thank you

February 18, 2023

17 hours ago, Claire8080 said:

Am I overdoing it? That's a lot of dividing and dosing but I am so afraid of going too fast. But is this way too slow?

You can't go too slow. If you can manage this method, it may work well for you. When you gain confidence, you may wish to modify it.

March 14, 2023

So I switched from taking one depakote 125mg delayed release at bedtime to taking 112.5 mg of delayed release sprinkles, splitting up the doses throughout the day like this

11PM 62.5 + 12.5 for 75 mg overnight (because it helps me sleep)

11AM add 12.5 for 87.5 mg

3PM add 12.5 for 100 mg

7PM add 12.5 for 112.5 mg a/day total

This was an improvement and stopped the interdose withdrawal symptoms significantly. After holding like this for 3 weeks, (in order to adjust to the 10% dosage drop and formulation change), yesterday I decided to try to even the doses up a little to eventually take it twice a day,

11PM 62.5 mg

11AM 37.5 mg

6PM 12.5 mg =112.5mg

Yesterday I felt alright, I still had problems with tinnitus, blurred vision but I wasn't doing anything but watching tv and didn't notice any drastic changes. But today at work, a couple of hours after taking the 11AM dose, I got hit pretty hard with worsening tinnitus and extreme light sensitivity. I got very jittery and couldn't focus or concentrate. I felt almost like I was going have a bout of derealization.

Should I go back to the smaller doses during the day or will my brain adjust to this? I guess I've never taken so much at one time during the day. Should I just try tapering from the night dose and risk becoming sleepless?

I also read that valporic acid significantly lengthens the half life of lamotrigine, is tapering the depakote causing an inadvertent taper of the 100mg lamotrigine I take that at night? Is it now petering out on me during the day?) And because I am taking 1mg of xanax at bedtime have I been having interdose withdrawal from that everyday since I started taking it (20 years ago)? I hadn't considered that until now.

Any thoughts on this will be greatly appreciated.

March 16, 2023

On 3/14/2023 at 2:53 PM, Claire8080 said:

Should I go back to the smaller doses during the day or will my brain adjust to this?

The larger 37.5mg daytime dose causes tinnitus?

Since the divided doses worked well before, you might take

11PM 62.5 + 12.5 for 75 mg overnight (because it helps me sleep)

11AM add 18.5 for 87.5 mg

7PM add 18.5 for 112 mg a/day total

This at least is only 3 doses per day. It is a slight decrease of 0.5mg/day, but shouldn't cause any problems. You'd gradually taper from the 7 p.m. dose until it disappears.

March 17, 2023

17 hours ago, Altostrata said:

The larger 37.5mg daytime dose causes tinnitus?

Since the divided doses worked well before, you might take

11PM 62.5 + 12.5 for 75 mg overnight (because it helps me sleep)

11AM add 18.5 for 87.5 mg

7PM add 18.5 for 112 mg a/day total

This at least is only 3 doses per day. It is a slight decrease of 0.5mg/day, but shouldn't cause any problems. You'd gradually taper from the 7 p.m. dose until it disappears.

Thank you! The tinnitus is always there but it got much much worse after the afternoon dose of 37.5 and was accompanied by super light sensitivity and shakiness.
I will try the two 18.5 doses during the day starting today. If that’s better, I’ll hold there for several weeks I guess. Thank you for your help, this is complicated and scary!

March 20, 2023

I don't think I had sufficienctly recovered from moving around the dosing to (75mg 11PM/37mg 11AM/12.5 3PM/12.5mg 7PM) when I tried 75/18.5/18.5 and I still had some very uncomfortable side effects again. I became very jittery and anxious, vision and tinnitus issues and increased BP, so I went back to the four doses. i'm holding here again and settled down except for pervasive fear.

I think i'm able to do the big dose at night because i'm also taking the lamotrigine (100mg) and the xanax (2 tablet 0.5mg) along with it. But the 37mg in the morning threw me for a loop. It seems I'm going to have trouble shifting doses around. I will try again this Friday when I don't have to work for a few days.

Should I try shifting around the xanax and lamotrigine with the depakote dose??

Has anyone ever successfully tapered off this drug? What, if any, chance is there to go back to 250ER, even if I've developed macrocytosis and my hair is falling out? It feels like I might just die either way. I guess that's the fear talking, but I don't know what the possibilities are anymore.

Thank you. Claire

March 20, 2023

What times o'clock do you currently take each of your drugs, with dosages?

March 21, 2023

Hi. These are my current dosages

11AM 12.5mg Depakote

3PM. 12.5mg Depakote

7PM 12.5mg Depakote

11PM 75mg Depakote

1mg Xanax (.5mg+.5mg)

100mg lamotrigine

HRT estridol (.05/.1)

120ER propranolol

I sleep pretty soundly from ~ 12AM until 5AM or so, then lightly and somewhat restlessly until 8 or 9
I think the Xanax/lamotrigine and propranolol make sleep possible so I am going to wait before I do any tapering with those

March 21, 2023

I know it would make more sense to be taking two even doses of the Depakote but I think I need the Xanax with it when I take anything but a very small dose

April 28, 2023

I am still working on my divalproex sprinkles taper. This is roughly how it has progressed so far.

October- dropped from 250EX to 125DR once a day with headaches. Didn't really notice anything but headaches, but nothing to serious and at the time I was uninformed about withdrawal so kept going. dr. said to try the 125mg every other day. That's when it hit me -DP/DR, tinnitus, insomnia, loss of appetite, anxiety, etc.

November - January- Went back up to 125mg. Symptoms improved, but I realized I was suffering interdose withdrawals and doctor suggested I cut the pills and spread fragments through the day. Well that didn't work, I was all over the place throughout the day.

Feb- finally convinced dr. to prescribe divalproex sprinkles, got a scale and started this schedule:

11PM 62.5 + 12.5 for 75 mg overnight (because it helps me sleep)(+100mg lamotrigine, +1mg alprazolam, HRT and 120mg propranolol)

11AM add 12.5 for 87.5 mg

3PM add 12.5 for 100 mg

7PM add 12.5 for 112.5 mg a/day total

Then I tried

11PM 62.5 mg (and others listed above)

11AM 37.5 mg

6PM 12.5 mg =112.5mg

but the 37.5 in the morning caused difficult symptoms so I went back earlier schedule above

I held this until things smoothed over, then april 14 th switched to an have been holding at

11PM 62.5mg sprinkles (+100mg lamotrigine, +1mg alprazolam, HRT and 120mg propranolol)

11AM 18.5mg

5PM 18.5mg =99.5 which is a little more than a ten percent drop but seems to be tolerable so far, but very uncomfortable

Questions-

I've learned that the divalproex extends the half-life of lamotrigine considerably, so as I taper the divalproex am I also changing the lamotrigine dose- hence tapering them both

Am I having interdosse withdrawals from the short-lived alprazolam every day (ever since I've been taking it?)

I have to see my doctor every three months to get the alprazolam refilled. I saw her last week and she recommended that I reinstate the 250mg ex and just try again down the road if I must, and she said I didn't need to titrate back up- just jump right back up to the 250mg. Even if I decided to do that, that sounds unwise to bump up by more than 50% at once, even if it's extended release. But if I keep on with this taper using the brassmonkey scale, at 10% drops off the 125mg it will be 2029 to get to .02. I don't know if I could possibly make it that long. Or would I be able to jump off well before that?

Thank you for any advice. I'm afraid to do anything one way or the other.

April 29, 2023

18 hours ago, Claire8080 said:

11PM 62.5mg sprinkles (+100mg lamotrigine, +1mg alprazolam, HRT and 120mg propranolol)

That is a lot of drugs you're taking together at 11 p.m. Please put ALL your drugs in the Drug Interactions Checker https://www.drugs.com/drug_interactions.php and copy and paste the results or a link to them in this topic.

18 hours ago, Claire8080 said:

I've learned that the divalproex extends the half-life of lamotrigine considerably, so as I taper the divalproex am I also changing the lamotrigine dose- hence tapering them both

Not a good idea.

18 hours ago, Claire8080 said:

Am I having interdosse withdrawals from the short-lived alprazolam every day (ever since I've been taking it?)

I cannot answer your question about alprazolam because you have introduced the confounders of many drug changes for the last year, plus currently simultaneously reducing lamotrigine. We advise changing only one drug at a time. When did you last change lamotrigine, and from what dose to what dose?

Please keep daily notes of times of day you take your drugs, their dosages, and your symptoms throughout the day. Post 24 hours of notes at a time in this topic, in a simple list format with time of day on the left and notation (symptom or drug and dosage) on the right.

April 29, 2023

Hi again. I have not changed or tapered the dosage of lamotrigine, I have been taking 100mg at night for several years.

It is after I started tapering the divalproex that I checked the interaction of the two drugs; I read (tried to) several very detailed journal articles about the two, but GoodRX put it in layman's terms for me:

"Valproate products can significantly raise blood levels of lamotrigine." Would it follow that by reducing the valproate product I would be lowering the blood levels of lamotrigine- and thus inadvertently "tapering" it without meaning to or wanting to? I do not want to.

I will send a 24 hour summary as soon as possible. Thank you for looking at this. I know I'm not explaining things very clearly these days.

April 30, 2023

Quote

April 16 2023 beginning 10% Divalproate sprinkles taper from 112mg to 100mg

What new symptoms emerged after you made this decrease?

How long have you been taking all of your drugs on your current drug schedule?

15 hours ago, Claire8080 said:

"Valproate products can significantly raise blood levels of lamotrigine." Would it follow that by reducing the valproate product I would be lowering the blood levels of lamotrigine- and thus inadvertently "tapering" it without meaning to or wanting to? I do not want to.

If in your case this is so, you will not be able to go off valproate without also "lowering" the lamotrigine in your body. If you taper valproate gradually enough, whatever change occurs in the lamotrigine should not even be noticeable.

What do you think lamotrigine is doing for you? Why are you taking alprazolam and propranolol? Why all 3 drugs at the same time at night (with valproate)?

May 2, 2023

In 2016 I was taking 1mg of Xanax for sleep and Adderall as needed for ADD. I started having episodes of DR/DP and constant anxiety. I stopped taking the Adderall thinking I was overstimulated by it.

I went to an outpatient psychiatric clinic, and I was seeing a therapist and a psychiatric NP. She tried me on several antidepressants (I don’t remember which ones) and tried me on lithium, but I had a bad reaction and side effects that were intolerable so she eventually prescribed the divalproex (500mg at least) and lamotrigine (200mg at least), and though she did not officially label me as bipolar she said it could not be ruled out although I have never been manic at all). At the time I was caregiver for my 90+year old mother and had other distressing family issues so I was willing to try anything. Originally I was taking these in split doses, but I cut out the daytime doses myself because my life situation changed and because I was afraid I was going to lose my insurance. I'm know I suffered from those cuts but didn't know. I stopped seeing the psych nurse and my GP continued to prescribe the divalproex at 250mg, and the lamotrigine at 100mg. She also put me on the estradiol because of hot flashes and the other symptoms of menopause.

In 2018 my GP sent me to a cardiologist because of blood pressure spikes and tacycardia, and he prescribed 120mg ER propranolol daily and 60mg propranolol tablets to take as needed. I took all the meds at night because I thought they helped me sleep and it was just easier to take all of them at one time. So I guess I’ve been doing it this way, in varying degrees for five or six years.

So, until last year, I was taking (all at 11PM)

250mg ER divalproex

100mg lamotrigine

120mg ER propranolol

I take the 60mg propranolol as needed during the day (as I was still having episodes of DR/DP and anxiety)

In October 2022 I wanted to get rid of the divalproex because of its side-effects (hair loss, vision problems, weight gain, macrocytosis) and it didn’t seem to be doing anything but harming me, so the doctor begrudgingly agreed to drop the divalproex to 125mg DR. Things took a while to smooth out (it was a big shock to reduce the dose so much and the formulation), I didn’t know anything about withdrawal, or interdose withdrawal so I took it along with the other meds at night. After finding this site I learned a lot, I particularly learned that I really wanted to get completely off the divalproex and found out there were sprinkles and that I could possibly taper off them.

So in mid Feb. I dropped the dose to 112mg sprinkles and split that into 4 doses,

11AM- 12.5mg

3PM- 12.5mg

7PM- 12.5mg

11PM- 75mg for a total of 112.5mg

I did this for at least 8 weeks and now I’ve changed to:

First,

11AM 18.5mg, 5PM 18.5mg, 11PM 75mg =112mg

I did this until I felt okay, not great then decided to drop, so when I made more capsules, as of April 16 or so I have settled at

11AM 20mg, 5PM 20mg, 11PM 60mg = 100mg

I am hoping to slowly even out the daytime and nighttime doses to be dosing twice a day, but for now I’m staying put for a while.

Since the drop to100mg I’ve had some increased anxiety, agoraphopia, DP/DR, tinnitus, and I’ve lost my appetite again. Less light sensitivity though. Some days are worse than others. But I’m still able to work. (Good thing I work at a bookstore and not SpaceX).

I suppose I could split up the nighttime doses of the propranolol and lamotrigine, but I’m afraid of screwing up my sleep. The propranolol has kept me from waking up in the middle of the night with tachycardia and the lamotrigine I think is helping keep my nervous system calm while the divalproex goes away. I do eventually want to taper the lamotrigine too, but one thing at a time. And when the time comes, I will try to taper the Xanax but as it is now, if I don’t take it before bed I do not sleep at all. Maybe after everything else is gone I won’t need heart medicine anymore. And I don’t know about the HRT because that has always been a quality of life matter for me, I couldn’t live with the hot flashes and such. (Though menopause seems like child’s play now.)

I will send a 24hr schedule possibly tomorrow. I hope at least some of this makes sense.

Thank you for reading this, you are a life-line!

May 3, 2023

What times o'clock do you take each of your drugs now, with their dosages? A list is easier for me to follow.

19 hours ago, Claire8080 said:

I am hoping to slowly even out the daytime and nighttime doses to be dosing twice a day, but for now I’m staying put for a while.

Since the drop to100mg I’ve had some increased anxiety, agoraphopia, DP/DR, tinnitus, and I’ve lost my appetite again. Less light sensitivity though. Some days are worse than others.

If I were you, I would not make any more reductions until these withdrawal symptoms go away.

May 14, 2023

I have been holding at the following dose and times since April 16

11am - 18.5mg divalproex sprinkles

5pm - 18.5mg divalproex sprinkles

11pm - 62.5mg divalproex sprinkles (for a total of 99.5mg sprinkles)

100mg lamotrigine

1mg xanax (.5mg+.5mg)

120mg propranolol ER

estridol hormone replacement, one tablet

I also have 60mg propranalol IR tablets to take as needed for episodes of tachycardia

I am feeling better since my post two weeks ago, and am considering doing another drop in a week, maybe two. I would like to eventually even up the sprinkle doses to two. I don't know how to start doing that.

Should I also consider splitting the lamotrigine and propranolol to two doses? Could I be having interdose withdrawals from them too? My symptoms (tinnitus, headaches, light sensitivity and vision distortion, loss of appetite) seem worse between 1pm and 6pm.

Thanks for looking at this

Claire8080- can't get off Depakote (and issues with other meds)

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