mamahen: looking for hope, help, ideas - venlafaxine struggles

[mamahen]

Hi All,

 

My 16yo vivacious daughter ran into a bout with serious depression when she was 14. After a failed trial with Zoloft, her MD put her on Effexor (venlafaxine) 75mg ER. While a relatively modest dose, she took this medication for two years. She also took Lutera (birth control) during this time to help with PMS/menstrual issues.

 

This past May we decided to discontinue the venlafaxine with doctor/psychologist's approval. Doctor gave us a very drastic and probably unrealistic taper program. We opted to taper more slowly than what doctor prescribed -- alternating between 75mg and 37.5mg, daily, every other day, etc then dropping to just 37.5mg.  We hovered at 37.5 for a period of time, and then tried to taper from there without success. Since she was miserable even while tapering, and since from what I was reading (I hadn't yet found this site...) it seemed like even more modest tapering would not avoid the misery of withdrawal, we dropped from 37.5 to 0.  She took her last 37.5mg venlafaxine pill sometime in late July. (She also discontinued the Lutera at some point over the summer, although I do not remember exactly when.)

 

She was miserable for 8 days. Her biggest symptoms were nausea, headache, dizziness/vertigo, occasional vomiting (flu-like symptoms). She decidedly did not have anger, anxiety, or any other emotional/mood-type symptoms and only a few brain zaps toward the very end. After day 8, she was good for about 10 days, after which the dizziness, headache, vertigo returned -- this time for 3 days.  After the third day of misery, she again was fine.  Repeat this pattern, and we are now in what I call our fourth "episode" (I guess, the correct term is a "wave"?) of withdrawal symptoms returning -- again, no mood/emotional issues, but vertigo, queasiness, stomach pain, headache. We have tried to treat her symptoms with very little success -- dramamine, ginger, meclizine, tylenol, ibuprofen, Excedrin migraine, promethazine, pepto bismol. MD has been willing to consider possibility symptoms have been withdrawal-related, but seeds were sown at our last visit that we were getting close to the end of that window. In addition to anti-nausea medications, at last check-in (after 3d "wave") MD prescribed 10mg fluoxetine to use as a "boost." That worked one time, and since then hasn't made much of a difference.  She has taken the fluoxetine 3x, and I would say all it did was serve to push off the inevitable.  

 

My daughter is home from school today, again, probably her 9th absence already this year (not even 2 months into school). I am at a loss at this point as to what to do to help her. The last "wave" lasted 5 days, and it looks like this current one is heading in that same direction (this is longer than previous 2 waves -- those were 3-4 day experiences). I will note that the onset of the "waves" seems to correlate to when her estrogen level would be at its lowest during her menstrual cycle. Curious? Does that suggest anything?

 

Thinking that there had to be a physiological reason for what she was experiencing, I focused on boosting her seratonin/norepinephrine production (to replicate what the SNRI had been doing?) -- starting her on 5HTP and L-Tyrosine, along with magnesium and fish oil. Even when reduced to just the 5HTP along with the magnesium and fish oil, anxiety was starting to become a problem. Switched to adaptogens (Rhodiola and Holy Basil) and the anxiety has disappeared and she seemed quite well-balanced until this latest "wave" where, again, it is the vertigo/nausea/headache trifecta that we cannot seem to remedy. Looking at working with a functional doctor at this point but very frustrated with what I am running into --- first available new patient appointments months out? (First place I called, could not get her in until March!!?) Wondering if a functional doctor can help?

 

Any ideas, suggestions, hope?  So scary to read of such long and painful experiences of others and the possible life-long consequences from these drugs. Realize we are probably paying the price for a poor taper (?) -- wish I had found this site sooner -- any helpful place to go from here?

 

Thank you for reading.

[Altostrata]

Welcome, mamahen.

 

I am sorry your daughter is going through this.

 

She does have classic withdrawal syndrome. While MDs are not well-educated about this, we know on this site it can last for much longer than a few weeks, even many months.

 

Going on and off psychiatric drugs can sensitize the nervous system to more drugs, supplements, and even foods. Her system needs to be treated very gently right now.

 

It sounds like the Prozac did help while she was taking it. If I were you, I'd try 0.5mg Prozac every day. Even that tiny amount can reduce symptoms and allow her nervous system to stabilize.

 

Do you have any Prozac capsules left? You can make a liquid with water and measure out 0.5mg with an oral syringe, see Tips for tapering off Prozac (fluoxetine)

 

Or, you can ask your doctor to prescribe Prozac liquid for this purpose.

 

Please let us know how your daughter is doing.

[mamahen]

Thank you for your reply, Alto-- I definitely hear what you are saying, about hypersensitivity, the need to be gentle with/to her brain and the need to reinstate.  Have discontinued all herbals and anything that works to boost neurotransmitters -- if the brain is trying to reset, we need to get out of its way and not cause distractions....  We will have to give serious consideration to reinstating (I know our window of opportunity is probably closing in....).  She is in a window now, so that is a hard decision to accept when you are feeling better....  We are both so eager (naive, perhaps) to believe that maybe that was the last episode, although the lessons and import of this website are not lost on me.... 

 

We had some blood work done last week and meet to go over results on Thursday.  Pending results, my daughter is willing to reinstate at that point.  I am wondering whether it would be better to reinstate Effexor v. the fluoxetine? She took a total of 4 fluoxetine 10mg capsules over the last 2 weeks.  The initial dose served to push off the full onset of the "wave" for about 3 days.  The subsequent 3 doses made no noticeable difference, and I actually wonder if it might have helped to extend the duration of her symptoms?  (This last wave ultimately lasted 7 days, with a point in the middle where she seemed to be getting better only to fade back again.) It is worth noting that the reason she was originally prescribed Effexor was because Zoloft was causing consistent motion sickness -- very similar to what her withdrawal symptoms are and have been....Was some of what she was experiencing with this wave actually sx from the fluoxetine? I suspect we would have to try again when she is not feeling bad to find out....

 

Would love to know your thinking on whether/why to reinstate w/ fluoxetine rather than return to Effexor. I understand the half-life issue, but I wonder if it is better to keep things clean, in a sense, by not adding a new drug to the mix....  Yet, I have read that, at low doses, Effexor really acts solely as a SSRI so maybe there really is no effective difference between the two worth worrying about.... 

 

Hope that makes sense, and thanks for any info you can provide.

 

[Altostrata]

I would reinstate fluoxetine liquid rather than Effexor XR. The liquid is easier to titrate. Plus, with the longer half-life of fluoxetine, she might have a smoother ride.

[mamahen]

Preparing to reinstate w my 16yo daughter who tapered too fast.  Hopefully we have not waited too long..... Choosing to stick with what she had been taking before, Effexor ER, as I fear confusing her brain even more if we use Prozac (plus, side effects of Prozac are similar to many of her wd symptoms...so it will be hard to recognize any benefit).  Her last dose was 37.5mg.  Thinking I average how many beads are in a capsule and divide by 1/4 to start.  That was recommended by MD as well. ?  

 

Any advice on what to expect? Be on the lookout for? Again, her last dose was in late July so about exactly 3 months ago.... Her main w/d symptoms continue to be headache/nausea/dizziness. Sometimes difficulty sleeping. No real mood issues at this point. I know we are trying to reestablish "stability",  and get her off of the "Fast Taper" track and onto a hopefully more predictable and ultimately safer and shorter "controlled slow taper" track.  I've read that reinstating will not make w/d symptoms go away so how do I measure whether reinstating is effective when there are no mood issues involved?  

 

Any thoughts, advice, suggestions, additional things to consider would be greatly appreciated.....  

 

 

[Gridley]

Reinstating CAN make WD symptoms, if not go away, be reduced to a tolerable level. That's the main purpose of RI.   At three months out, you are just within the time period when reinstatement predictably works.  As to whether the RI is working, look for a reduction in the WD symptoms your daughter has (they don't have to be mood symptoms).  This can happen soon or can take longer.  

 

It takes about 4 days for a dose change to get to full state in the blood and a bit longer for it to register in the brain.  Please read:

 

About reinstating and stabilizing to reduce withdrawal symptoms. -- at least the first page of the topic

 

Reinstatement isn’t a guarantee of diminished symptoms for everyone, but it’s the best tactic available.    We usually suggest a much smaller reinstatement dose than your last dose.  These drugs are strong, and when updosing/reinstating it is better to start with a small amount and increase of symptoms remain unbearable.  If you take too much it may be too much for your brain and can cause you become unstable.  Sometimes it can be hard to regain stability after this happens.

 

If I am reading your post correctly, you are not reinstating the full 37.5mg but rather 1/4 of that.  37.5 would be too much.  I would consider reinstating a smaller amount than 1/4.  You can always go up.

[mamahen]

Thank you, Gridley....  I just opened up the capsules to see what I will be working with.  There are 35 fairly uniform sized beads and 5 baby beads that must make up the extra 2.5mg for a 37.5 capsule. So, that makes things fairly easy with 1 regular-sized bead equal to 1mg.  If you believe 1/4 (roughly 9mg) is too strong of a starting point for RI, what would you suggest?

 

Thanks again.

[ChessieCat]

2 hours ago, Gridley said:

hese drugs are strong, and when updosing/reinstating it is better to start with a small amount and increase of symptoms remain unbearable.  If you take too much it may be too much for your brain and can cause you become unstable.  Sometimes it can be hard to regain stability after this happens.

 

If I am reading your post correctly, you are not reinstating the full 37.5mg but rather 1/4 of that.  37.5 would be too much.  I would consider reinstating a smaller amount than 1/4.  You can always go up.

 

The starting dose is a tester dose to see what the response is to reintroducing the drug.  Because she has been off for about 3 months you might want to extra cautious and try 1 bead to start and keep notes on paper.  You can always increase it gradually.

 

As Gridley says, these drugs are strong and it is better to start with a small amount and increase than to risk taking too much.  The brain will have made some adaption during the time of being off, but it is impossible to know how much it has done this.

[mamahen]

I believe I kindled my daughter....  This is all so overwhelming and hard to get my head around.... I had stopped all supplements earlier after hearing from AltoStrata, but they were again recommended by doctor we began seeing...  I WAS wary and we did not jump into taking them, but I did let her take a few in moments of weakness, I suppose.  I let her take them when she was feeling good/in a window -- for in my mind I suppose I believed she was "stable."  Clearly I get now that stable does not mean a few good days in a window....What a steep steep learning curve.... Sunday night, I gave her a normal dose of l-theanine.... she has been laid out ever since.  Both headache/nausea 7/10, return of body aches, piercing pain in head, ringing/pulsing in ear, very photo/phono-sensitive....  Baby aspirin brings the headache down a notch.

 

In the meantime, I did reinstate the Effexor XR.  1mg bead, taken in the morning, w/ food.  This morning was the 2d dose. No effects + or - noted yesterday.  Reduced her fish oil and magnesium by 1/2 for fear that maybe she has become extra sensitive to those now? If she has been kindled, how might that impact/affect our attempt to RI? If she has been kindled, _______? what does that mean?

 

I am at a loss, in shock perhaps (I can barely eat/ have no appetite), for how all of this has happened in the blink of an eye -- we're supposed to be going on college visits and she can't even go to school.  All her regular doctor wants to do is get an MRI and treat her for migraines.  How do I find a new doctor and tell them I'm giving her 1 bead of medicine and have them not think I am totally insane? How do I go through this without a doctor alongside when she is missing so much school....  

 

thank you for reading. 

[Gridley]

I suggest you stop all supplements at this point.  Your daughter may well be hypersensitive, and stopping the supplements will eliminate one variable.

 

I would continue with the 1 bead.  You are only on the second day.  Remember, it takes about four days for a dose change to get to full state in the blood and a bit longer for it to register in the brain.

 

Unfortunately, the vast majority of doctors know nothing about antidepressant withdrawal, much less reinstatement or hypersensitivity to supplements.

 

Yes, it's a steep learning curve, but you are doing fine.  Please don't kick yourself for mistakes.  We all make them.  Try to avoid stress in both your lives as much as possible.  

[Altostrata]

Hi, mamahen.

 

To be scientific, let's try only one thing at a time. Please stick with the one (largish?) bead at the same time each day.

 

Please keep daily notes on paper about your daughter's symptoms, when she takes her drugs, and their dosages. Use a simple list format with time of day on the left and notation (symptom, drug and dosage) on the right.

 

We need to know her symptom pattern before and after she takes a drug.

 

[mamahen]

Thank you.

[mamahen]

Sunday, October 21:  feeling good

7PM  -- 200mg L-theanine, 4000mg fish oil, 200mg magnesium 

10PM -- bad headache/nausea

 

Monday, October 22: woke up w/ bad headache, nausea, off balance

7AM -- 4000mg fish oil & 200mg magnesium

4PM -- 4000mg fish oil & 200mg magnesium

symptoms throughout day: shaking, cold hot flashes, left ear pulsing, very queasy, body aches she described as like growing pains

symptoms later in evening: photo/phono sensitivity, piercing pain in head (topical and internal) (7/10)

11PM -- 162 mg baby aspirin (brings headache down a notch)

 

Tuesday, October 23:

1:30AM -- 162mg baby aspirin

6:30AM -- 162 mg baby aspirin

8:40AM -- 1mg Effexor ER

8:40AM -- stomach burning, churning, nausea, headache, stab right side of head, off balance, body aches

11:15 --200mg magnesium  4000mg fish oil

11:30 --nausea worse

12:30-- headache (6/10), nausea (5/10), dizzy, off balance, spinny, right side pain in head

3:15 --200mg magnesium 4000mg fish oil

4:00 --short walk outside, ringing/pulsing in ear, headache, nausea, off balance

11:00 -- 162mg aspirin, difficulty falling asleep

 

Wednesday, October 24:

6:30AM -- Migraine Relief medicine (250mg acetominophen, 250mg aspirin, 65mg caffeine)

8:30AM -- 1mg Effexor ER, headache (5-6/10), nausea (5-6/10) dizziness, body aches

9:00AM -- 100mg magnesium, 2000mg fish oil

1:00PM -- spinny motion sickness type dizziness, nausea, headache (5/10), overwhelmed by noises outside, flu-like, fatigue, "my brain feels like mush"

4:00PM -- 162mg aspirin

6:30PM -- head spinning, feels like mush, headache/ nausea (7/10 "at least" -- "feel really bad"), achy, like just got off a spinny ride, being churned like butter, very light headed, stomach twisting

7:00PM -- 324mg aspiring

11:30 -- stabbing pain right side of head, nausea, headache, feels like her left eye is being pulled out

 

Her symptoms are constant... only one brief window where headache/nausea were at a 5 for a brief period of time since Sunday night. Last dose of aspirin brought only 45 minutes of slight relief.

 

thank you for any insight.

[mamahen]

Seems like her CNS is in complete chaos again after the L-theanine.... Is continuing the Effexor still a reasonable course? (I know it hasn't had a chance to do much yet, but I wonder whether it will do more harm than good to a brain in disarray....) 

 

[mamahen]

Update: 

 

still no improvement, but sadness is beginning to creep in.... not sure if that is the Effexor kicking in (numbing her zest for life), or the realization that she is missing out on so much right now (she had been very much preparing for and looking forward to starting swim team this week.)

 

Going to psychiatrist tomorrow. We have to this point only worked w/ family practitioner.  While I like the philosophy laid out in his bio, I know enough to be cautious of his background as an in--patient doctor, and the intake person's emphasis about how he is really good at "diagnosing/making sure we've got the right diagnosis..." 

 

Please if you have any advice on how to approach, or things to be careful about, it would be greatly appreciated.  I was very clear with the intake person that daughter's issues were withdrawal related, she communicated w him after our phone call and was able to get me in tomorrow.  He lists various w/d related areas among his "specialties," but I suspect  we will hear the "return of underlying condition" or "unmasking of previously undiagnosed condition" line....  Any ideas what he will be likely to suggest?

 

thanks.

 

[Gridley]

I would certainly be cautious that he doesn't put your daughter on the merry-go-round of more drugs.  That is, after all, what they do.  He will be likely to suggest that she go back to 37.5mg (which could be very destabilizing) or switch to an entirely new drug.  My suggestion remains to hold at 1mg and give it a chance to see how it does.  If necessary you can up it another milligram (not now though).  Please read these links:

 

How do you talk to a doctor about tapering and withdrawal?
 
What should I expect from my doctor about withdrawal symptoms?
 

 

 

[mamahen]

Update:

 

Meeting w/ doc went as well as could have been hoped for.... He listened.  He did not think I was crazy.  Believed my theories were reasonable.  Stated that her situation certainly/clearly (?) seemed to be related to coming off of the Effexor.  He didn't think the micro dose was crazy.  Understood why we were doing it.  Also understood need to consider hypersensitivity in dosing other meds.... (He prescribed Zofran for the nausea, in a liquid form to dose in 1-2ml servings -- not rushing to use it, though....). 

 

He also called in to the pharmacy to have them make a liquid solution regular-release Effexor where 1ml = 1mg.  Thought that might be the easier way to go, long term....  Thoughts on transitioning to that?   I would say stick w/ the plan to get through one solid week w/ the 1mg ER bead to allow it to take full effect before making any changes, but.... after that (assuming everything stays status quo)?

 

It was a very long appointment, going through current situation as well as detailed background/history.  He did veer into predictable territory, not because of her withdrawal difficulties though, more in a "looking at your history, putting this timeline together, this is what I see, and let me see if this fits" sort of way.  It wasn't a perfect fit (BP), and I do believe that part of her timeline includes iatrogenic issues, but we will save that battle for a later day.... For now, I feel we have someone who can help us through this, and that is a tremendous relief. 

 

Update on how she is doing, picking up from where I left off:

Wednesday, October 25:

8:40am -- 1mg bead Effexor ER

    headache 7/10, nausea 5-6/10, left eye pain, pounding head, achy, dizzy

10:00am -- 324mg aspirin, 1000mg ginger root

    headache 7/10, nausea 5-6/10, pounding head, left eye pain, achy, dizzy

11:00am -- headache better 5-6/10, nausea same 5-6/10, feeling a little better

12:30pm -- headache back to 7/10, nausea, sad

1:40pm -- headache, nausea 6/10

4:20pm -- stabbing headache 6/10, stomach queasy but NOT burning, NOT dizzy, NO ringing in ear 

4:20pm -- 324mg aspirin

9:30pm -- nausea 5/10, black spots in vision (if get up fast), headache 6.5/10--pounding, knife, eye pain though not as bad, photo/phono sensitivity (those have been constant) NO stomach burning, NO ringing in ears, CRAMPS (this is new) mood = 8/10 

 

Friday, October 26

7:15am 324mg aspirin

    nausea 6/10, churning/burning stomach, cramps, pounding headache (7/10), eye pull, very dizzy, light headed, stabbing pain back of head

7:45am  1mg Effexor ER (had to take early due to MD appt)

10:30am  -- headache 6/10, nausea 7/10, dizzy, photo/phono phobia, stomach burning and churning

10:30am  -- acetominophen 500mg

12:30pm -- 2 Tums

      headache 5/10, nausea 7/10

2:15pm -- headache (pounding) 6/10, nausea 6/10, cramps, pressure in ear (but no ringing)

.....to be continued....

     

 

 

 

[Altostrata]

mamahen, I'm sorry I missed your update a few days ago.

 

My take is that one bead is insufficient. I would increase to 2 beads, 1 in the morning and 1 at about 5 p.m.

 

At least we know that reinstatement can help. If you want to use the liquid, you'd also dose that twice a day.

 

It seems that one bead is roughly 1mg, so you can substitute the same dosage with the liquid. I would substitute the liquid for the morning dose first, use the extended-release bead for the evening.

 

Please let us know your daughter's daily symptom pattern.

 

[mamahen]

Thank you, Altostrata, for the advice.  I do not yet have the liquid to start, but will add the 1mg ER bead this afternoon.  Will it be confusing to her system (concerned about more cause for pain...) to dose with IR in the morning and ER in the PM?

 

 

[Altostrata]

1 hour ago, mamahen said:

Thank you, Altostrata, for the advice.  I do not yet have the liquid to start, but will add the 1mg ER bead this afternoon.  Will it be confusing to her system (concerned about more cause for pain...) to dose with IR in the morning and ER in the PM?

 

 

 

Probably not. The ER will persist throughout the night, which is good.

[mamahen]

Update:  I did not add the extra ER bead yet.... 

 

Friday, October 26

7:15am 324mg aspirin

    nausea 6/10, churning/burning stomach, cramps, pounding headache (7/10), eye pull, very dizzy, light headed, stabbing pain back of head

7:45am  1mg Effexor ER (had to take early due to MD appt)

10:30am  -- headache 6/10, nausea 7/10, dizzy, photo/phono phobia, stomach burning and churning

10:30am  -- acetominophen 500mg

12:30pm -- 2 Tums

      headache 5/10, nausea 7/10

2:15pm -- headache (pounding) 6/10, nausea 6/10, cramps, pressure in ear (but no ringing)

3:00pm -- 2 Tums

      headache 5/10, stomach painful (brief period of no nausea), pressure in ear but no ringing

7:45pm -- headache 5/10 (less severe pounding, no stabbing), nausea (5/10), phono-sensitivity, light headed, pressure in ear, NO churning, cramps, mood 8/10

      2 Tums

10:00pm -- feeling more functional, fluttering/crackling in ear, headache 5/10, cramps, still light headed

 

Saturday, October 27

9:10am 1 mg Effexor ER

      headache 6/10 (stabbing/pounding), nausea 5/10, sharp stomach pain 6/10, dizzy, light headed, light pressure in ear (much better), feels like got really good sleep

      breakfast -- gluten free rye toast w/ butter, took bead w applesauce

10:30 650 mg Tylenol

     sharp pain in stomach, headache less, nausea less

12:15 headache 6/10, stabbing pain in ear, nausea 6-7/10, sharp stomach pain, dizzy

     lunch -- leftover chicken parmesan

1:00 200mg advil -- no significant effect

1:30 1000mg ginger (does seem to help)

3:00 no nausea, no ringing in ear, headache 6/10, light headed/dizzy, stomach pain (6/10)

7:00 headache 7/10, pressure through entire head, nausea 5.5/10, stomach cramps 5.5/10, pressure in ear

     dinner -- meatloaf (all good ingredients), broccoli, cucumber

8:00 324 mg aspirin (has at least some effect)

8:30 2 Tums

       headache 7/10, nausea 5.5/10

10:30 stabbing pain in back of head/neck brings her to tears (9/10), pains across body, dizzy, headache pounding 6/10, nausea 5/10, cramps

       kept her in magnesium bath for a while to try to calm the neck pain issue, got her relaxed a bit and down to a 7...

 

Last night was the worst night we've had since we started the beads....  Wondering if adding that extra bead would have made things any better..... But also worried about making changes before transitioning to the immediate release.  Two doctors have now said she is probably a "slow metabolizer."  I worry dosing with immediate release in AM and extended release in PM  may be too confusing for her system....??

[mamahen]

Have the liquid immediate release.  It is from a different manufacturer, manufactured in Israel.  Going to give her the extra extended release bead in a bit.  Should I still stick w/ the 1ml IR in the AM and 1mg ER in the PM plan? 

[Altostrata]

Yes, I would give her 1ml IR liquid in the AM and 1mg ER bead in the PM. My intuition is she needs more Effexor.

 

Depending on how she reacts, please be prepared to increase her reinstatement beyond 1ml IR liquid in the AM and 1mg ER bead in the PM. The right amount for her could be any amount, but probably less than 10mg.

[mamahen]

Yes.  Just don't know how quickly to do it....  Do I need to add a mg/ml and then hold for 4-7 days before adjusting?  

 

[mamahen]

Update:  Overall, today was a better day

8:40am 1ml IR Effexor

   headache 7/10, nausea 7/10, generally doesn't look good

9:45am . breakfast

   3 Tums

   headache 6-7/10, nausea 7/10, no new symptoms, stomach pains worse, headache improved

   slept until lunch

12:30 lunch 

   headache better (6.5/10), stomach worse (7/10), hot flush, brain fuzzy

   sat outside for a while

   epsom bath

1:30 stabbing pain in head gone (still 6.5) but stomach worse

   1000mg ginger

3:15 headache 6.5, stomach (nausea, churning, burning) 6.5

   3 Tums

5:00pm -- 1bd ER Effexor

   headache 6.5/10 (less stabbing), stomach 7/10, photo-sensitivity improved (went on short walk in bright sunlight), dizziness improved, ear pressure improved 

7:00pm -- dinner

  headache 6.5, nausea 7, mood 8/10, foggy brain

10pm -- headache 6.5, stomach pain 8/10 

  1000mg ginger

 

advice on how/when to adjust dose?  important to keep morning and evening ml/mg the same, I assume....

 

thank you

 

[mamahen]

New symptoms cropped up overnight -- burning sensation all over body, back pain/muscle aches.  Not sure if epsom bath made these go away, but I believe she was able to sleep most of the night after taking one.  (She was unable to sleep before that, but not sure that counts as insomnia at this point....)

 

Wondering if this is a sign I should discontinue reinstatement?

[Snek]

Mamahen, I have no medical advice but please know that as one Mom going through this to another I am thinking the best thoughts for your daughter and for you! One thing that is helping me cope right now is remembering that our kids are young and resilient. Their brains won't stop developing until they are 25 so I like to believe that they have a good chance to heal. We just have to help them get through this hard and so unfair time. *Hugs*

[mamahen]

Thank you, Snek, for the words of encouragement.  I hope you and your daughter are both doing well. 

 

Update:

dosing 1.5ml IR in AM and 2mg ER in PM.  "Burning muscles" returned briefly yesterday that was alleviated by magnesium lotion.  Headache/pain was better last night (6/10) but stomach issues were worse (7/10).  Dizziness/balance issues seem to have abated a bit.  Phono-sensitivity heightened.  She woke up feeling particularly bad this morning -- new pains in head, ear/jaw, more muscle aches and pains.  Wondering if these new symptoms are due to reinstatement.  Met with another med professional that recommended getting her on something different....  Too late to try the fluoxetine? 

 

[mamahen]

Stability remains elusive.  We had been at 3.5mg (1.5ml IR am and 2 ER beads PM) for almost a week, symptoms were starting to improve, and we increased morning dose to 2ml IR....  Another mistake.... She did not respond well to the updose and severity of symptoms increased again (she also got her period the day symptoms returned full blown...?).  Returned back to 3.5mg total/day -- that was on Monday.  This is all so precarious.... Feel like I am poisoning her every time I give her the medicine.... She wants to continue at 3.5 for at least a week in hopes things will settle down again.  I wonder whether the bad reaction to the updose has blown up any chance for successful reinstatement and whether continuing to administer the Effexor is counterproductive at this point. 

[mamahen]

Looking for advice/suggestions/best ideas on how to titrate down attempted reinstatement of Effexor

 

Currently, 1.0ml (=1.0mg) immediate release in AM (this represents a .5ml decrease implemented 4 days ago, no real difficulties so far).     2 extended release beads (1mg each) PM.

 

One thing worth noting:  In each of the extended release capsules there are a handful of "mini-beads" that might allow for titration down of the extended release....  would need to get a scale, obviously, but that might allow greater flexibility in designing a plan.  

 

Wondering if I can simply continue to widdle down morning, immediate release dose, and then begin working on evening dose,?  Would you anticipate needing to divide up ER dose to 1bead am and 1 bead pm at some point and widdle down both doses?

 

Hope this makes sense....  Any thoughts or suggestions would be greatly appreciated.  Would love to simply drop whole beads at a time (holding for 5-7 days) and get her off ASAP -- please counsel on this because it is a temptingly easy (and probably foolish) approach.  I know such drops clearly do not follow the 10% rule (I've seen 25% drops OK for reinstatement titration?), but I worry the longer I keep her on this, the more chance it has to "lock into" her system, making things even more difficult/complicated....

 

If we move too quick, am I right to fear new symptoms can pop up, correct?  Slow and steady suffers less.....

 

Any suggestions or thoughts would be greatly appreciated. 

 

Thank you.

Mamahen  

[Snek]

Dear mamahen,

 

As you know I am no expert, but it seems to make sense to me that to keep things as stable as possible you would want to keep the morning and evening as even as possible rather than just drop the morning. However, we are talking about extended release beads here, so maybe this is not an issue. Have you considered a compounding pharmacy? I just ordered Bupropion for my daughter from a compounding pharmacy because I think they can do a better job of measuring than I can. Of course I am now second guessing myself and worrying that THEY will make a mistake, but I'm probably being silly. I'd love to hear other people's experiences with compounding pharmacies. 

 

Wishing your daughter a good and healthy recovery,

 

Snek