Jardinista: Need info on tapering off baclofen

[LotusRising]

Hi @Jardinista

 

Sorry, I missed your response.

 

I'm confused. You're asking about reinstating the baclofen, but according to your signature, it appears as though you already have? It looks as though you went back on baclofen Jan 8, then updosed to 7.5mg on Jan 18. Are you wondering about updosing further?

 

If you tag me by putting @ in front of my name in your response, I will see your post a lot quicker. I will also start following your topic.

[Jardinista]

@ LotusRising -

 

Thank you so much for responding so fast.

 

Sorry to dump so much information for you to wade through, but It think this is my most thorough summary of what has happened and what my questions/concerns are:

 

Baclofen details:

 

History:

Baclofen 10mg

            1xday December 28, 2023 (as best I can remember)

            January 4, 2024 stopped taking

            January 5, 2024 resumed baclofen at 5 mg 1xday   

            January 8, 2024 Upped dosage to 7.75mg 1xday. 

            April 6, 2024 (present) WD symptoms persisting

(NOTE - I may have put in another start date elsewhere - I can't remember the date for sure.  Please dIsregard any other date if appears.  Working with poor memory and brain fog)

 

 Withdrawal symptoms as of April 6, 2024:

·        90-95% Bedridden

·        Queasiness, nauseous feeling

·        Anxiety

·        Extreme fatigue, muscle weakness, inability to be upright over 5 minutes without distress

·        Brain fog

·        Hot flashes

·        Chills

·        Diarrhea, loose stools

·        Mild anorexia

·        Tremors in hands

·        Depression and suicidal ideation

·        Insomnia

·        Increased noise sensitivity

·        Exacerbation of ME/CFS symptoms

 

Update Apr 13, 2024:  Per comments from FindRest , I've stopped taking most of my supplements and have less nausea and anorexia

 

 Discussion:

·        Took baclofen 10 mg 1xday for 7 days before stopping. 

·        Developed immediate severe withdrawal symptoms - nausea, dizziness, anxiety, weakness, anorexia

·        Reinstated to 5 mg, then upped to 7.5 mg, due to severity of WD at 5 mg

·        Haven't stabilized at 7.5 mg.  WD symptoms continue to be severe.  I have been bedridden the majority of the time and can’t care for myself.  Slight improvement for a couple of weeks after acupuncture treatments until I developed insomnia (2.5 - 4 hours sleep/night) for the last 3 weeks, leading to severe weakness, worse anxiety, nausea, anorexia, tremor 

 

 Dosing schedule as of April 6, 2024:

·        2.25 mg baclofen at 8:45 am, 10 am, and 11:15 am.  Relieves nausea and some anxiety.

·        8 mg (9 beads) venlafaxine at 9:30 am.  Taking my venlafaxine dose seems to make me feel a little better about 5 hours later.

 

 Insomnia

·        Haven’t gotten a full night’s sleep since March 10, 2024.  My already limited strength is draining away.  Acupuncture treatment usually gives me one to two nights of 6 hours, then back to waking after 1-3 hours and not able to go back to sleep. 

 

Update Apr 4/13/2024 Insomnia somewhat improved with more nights of 5-6, sometimes even 7 hours of sleep, although I still wake up at least once a night and have difficulty getting back to sleep.

 

Complicating Factors

·        74 years old in poor health

·        Diagnosed with mitochondrial dysfunction (blood test April 2023).   Mitochondria unable to produce adequate energy for body to function properly.

·        35 year history of AD use.  Four different ADs with too-fast withdrawal from first three

·        Based on symptoms and on results of the mitochondria test, diagnosed in April 2023 with ME/CFS.  Symptoms began in 2014.  Currently little strength, PEM, hypersensitive to many drugs, impaired immune function, limited ability to exercise

·        Currently tapering off venlafaxine HCL XR since 2018 - paused at about 8 mg since January 2022

 

Questions:

·       I thinking that since being polydrugged with baclofen on top of venlafaxine, I’m experiencing protracted withdrawals with developing withdrawal symptoms.  Does this seem right?

·        Some people have reported (in a venlafaxine withdrawal support group), that after having a too rapid taper, they were able to reinstate venlafaxine back to the dose at which they are not having WDs, stabilize, and then successfully taper at no more than a 10% drop from previous dose over no less than 4 weeks.  Therefore I’m asking about the risks that might be involved with reinstating baclofen.  My condition has been deteriorating and don't know if it's better to stick out my current withdrawal symptoms or to carefully titrate up to see if withdrawal symptoms resolve.  Sticking it out could take months and my condition is deteriorating from being in bed - muscle wasting which is a concern for older people.  Don’t know if it’s valid to compare what happens with venlafaxine to baclofen.

·        I believe what I’m experiencing are withdrawal symptoms and not side effects because I feel a little bit better after I take baclofen, and also because they are so much more overwhelming than the side effects I had.

·        The side effects that led me to stop taking baclofen were unpleasant but relatively mild compared to the withdrawal symptoms I’m having now.  I would rather deal with the side effects, even long term, than the withdrawal symptoms which are causing serious health issues at this time that I fear will lead to even worse overall health.

·        I realize there’s no guarantee reinstating will help.  I know it’s not possible to know what will happen, but need advice about whether it’s more likely reinstating would help or more likely it would hurt or make no difference.  Do you think I’m likely to worsen my condition if I reinstate?

·        How risky is it if I try adding a small amount of baclofen to my current dose, with the idea of increasing until I feel relief (if I do). 

·        Because of my age and poor health due to ME/CFS I am concerned  with my weakening condition  so need to know how to assess whether it’s better for me to reinstate to 10 MG original dose) or something in between 7.5 mg (current dose) and 10 mg, or better to stay at 7.5 mg until (or if) I’m able to stabilize. 

·       The way I feel now is hard to tolerate and mostly waves with very few brief windows. I’m afraid being mostly bedridden is causing damage to my already poor health, but I’m too weak to move around for more than a few minutes.  I don’t know what else to do – please help me figure out what has the best chance of helping me get through this.

[LotusRising]

12 hours ago, Jardinista said:

Developed immediate severe withdrawal symptoms - nausea, dizziness, anxiety, weakness, anorexia

·        Reinstated to 5 mg, then upped to 7.5 mg, due to severity of WD at 5 mg

·        Haven't stabilized at 7.5 mg.  WD symptoms continue to be severe.  I have been bedridden the majority of the time and can’t care for myself.  Slight improvement for a couple of weeks after acupuncture treatments until I developed insomnia (2.5 - 4 hours sleep/night) for the last 3 weeks, leading to severe weakness, worse anxiety, nausea, anorexia, tremor

So, to confirm, you experienced sudden symptoms after stopping baclofen for only 1 day. You then reinstated to 5mg baclofen, and then 7.5mg and am I understanding that you had some improvement in your symptoms when you did this, but did not return to your baseline?

[LotusRising]

12 hours ago, Jardinista said:

need advice about whether it’s more likely reinstating would help or more likely it would hurt or make no difference.  Do you think I’m likely to worsen my condition if I reinstate?

To answer this question, the short answer is I really just don't know. We are all so different. 

 

12 hours ago, Jardinista said:

don't know if it's better to stick out my current withdrawal symptoms or to carefully titrate up to see if withdrawal symptoms resolve

 

You noted some improvement in sleep. Have you noticed any other improvements?

 

12 hours ago, Jardinista said:

need to know how to assess whether it’s better for me to reinstate to 10 MG original dose) or something in between 7.5 mg (current dose) and 10 mg, or better to stay at 7.5 mg until (or if) I’m able to stabilize.

We would not suggest increasing straight to 10mg from 7.5mg. If it were me and I knew I was sensitive, I would make incremental updoses, maybe by 0.5mg at the most. Maybe even going to 7.6mg first to see how your body responds. 

 

I'm also wondering about your dosing schedule with baclofen. I see it has a short half-life, but is there a reason you dose only in the morning? What happens in the afternoon when you're not taking it?

 

[Jardinista]

@LotusRising

 

Yes to your first question - continued to have WD symptoms and debilitating fatigue.

 

I answer to questions in your second post - yes, I think that stopping all the many supplements I was taken has helped at least a little.  I've mostly stopped feeling nauseous and have fewer periods of anxiety, hot flashes and chills.  The fatigue and muscle weakness continues - this could be from withdrawal, from too long in bed and almost complete lack of any activity, or (I was doing more research about baclofen) could be the lower limb weakness that I just discovered is a common symptom of baclofen.  Walking and standing are incredibly difficult for me.  So it's certainly difficult to sort out what's going on and decide what my best bet is.

 

Thank you for offering your thoughts about reinstating. Even though I know it's not possible to predict what will happen, it's just very helpful to know what people knowledgeable about the many effects of psychoactive drugs think.  I agree it would be unwise to shoot up to 10 mg and that tiny increments would make the most sense.

 

By the way, congratulations on getting down to only .25 mg clonaz - I hope you're able to get to zero soon.  I'm sure it's been a terribly hard road.

**********************

 

Oh, sorry - forgot about your question about bac dosage.  I usually feel bad in the morning and seem to be helped by taking the baclofen.  I try to spread out the effects by taking three doses over a longer time.  I also usually feel better about 5 hours after taking my venlafaxine dose, and that improvement usually lasts 10 hours or so, so I take that at 9:30 am to help me get through the rest of the day.  This effect after taking venlafaxine only started happening after I had the WD effects from taking baclofen.

 

[LotusRising]

3 hours ago, Jardinista said:

Oh, sorry - forgot about your question about bac dosage.  I usually feel bad in the morning and seem to be helped by taking the baclofen. 

I wonder if it would help to spread it out more for better coverage?

 

3 hours ago, Jardinista said:

By the way, congratulations on getting down to only .25 mg clonaz - I hope you're able to get to zero soon.  I'm sure it's been a terribly hard road.

Thank you! It was, and is a long, hard road, but I'm now a year off  It sounds like you've come a very long way as well.

 

And of course, you're welcome. I hope my response was useful.

[LotusRising]

@Jardinista

 

Just checking in to see how you're doing?