Macadamia: Zoloft taper - when to finally quit?

[Macadamia]

I've tried that in the past. It's hard on my back. I injured my back pretty badly in February - took 5 weeks to recuperate. I've been doing maintenance stretches since then which is helpful. 

 

We did an experiment of putting an inch and a half or so books under the bed legs at the head of the bed, and I took a nap. It's a little weird, but doable I think. My BF slides out of bed if you raise things too high.

[Macadamia]

I talked to my doc yesterday because the Gaviscon, while somewhat helpful, is not cutting it. I'm supposed to add Pepcid AC and report back in two weeks. This will hopefully help get ahead of the reflux. Feeling very weak. My family is helping with food etc. The first half of the day sucks, then thankfully the second half is better. 

[ChessieCat]

On 31/08/2017 at 4:51 AM, Macadamia said:

My BF slides out of bed if you raise things too high

 

This gave my a giggle!  Dose he stay asleep and find himself on the floor and wonders what happened?  I'm only joking.  I realise that the situation behind this isn't funny.

 

Solution:  He could sleep with a harness on connected to the bed head.

[Macadamia]

Thanks for the little laugh. He slides down so that his feet are hanging in the air. 

 

The Pepcid seems to be kicking in a little today. Things are a little better, though I'm not out of the woods yet. Still have anxiety, issues with tv, noise, apneas, hot flashes, trouble sleeping, low energy, etc. I got help with breakfast again to conserve energy. 

[baroquep]

Hi Macadamia, good to hear the gaviscon has helped over the last few days.  It's always good news when something we do helps rather than aggravates our symptoms.  It sounds like you are heading in the right direction so I would try and remain as patient as you can.  While we are all different, when I destabilized at the beginning of the year, it took me a couple of months to re-stabilized and three months before I could restart my taper.  You are already six week in so I have a feeling that you will start to see improvement soon.  The OCD seems to be very common in withdrawal and the only thing we can do is realize that it is a withdrawal symptom and change the channel by distracting ourselves with something else.  

Withdrawal sucks, no ifs, ands, or buts about it, so all we can do is try and make things more comfortable as we carry on with patience and grace for ourselves throughout this unpredictable journey.

 

Just in case you haven't already seen these links, have a look, you may find something that helps calm your symptoms and move you forward towards stabilization.  Best of luck.  Please keep in touch and let us know how you are doing.

 

Brain Remodelling

Windows and Waves Pattern of Stabilization
Non-drug techniques to cope with emotional symptoms

[Macadamia]

Thanks for the info. I'm having trouble concentrating for long.

 

I've had a lot of CBT with 2 therapists. One specialized in OCD. The takeaway from that which resonated with me was "don't take the thoughts seriously". 

I am using EFT, Healing Touch Therapy, prayer, journaling, coloring pictures, playing guitar (especially slow calm music), going outside for a bit when I can. Leaning on my BF and sister for support. Earplugs are essential for noise sensitivity. 

 

My sister is musical enough to play ukulele while I play guitar. I'm showing her some tips on playing.

 

I can get on the computer twice a day for short periods to distract myself. I try to limit it to calm stuff. 

 

Found that a hot water bottle over my stomach can calm spasms from reflux. 

 

Most tv is not good, but I'm re-listening to an audio book I liked last time through this, which was Anne of Green Gables. 

 

 

[ChessieCat]

Looks like you've got some excellent tools in your coping toolbox and are making good use of them.

[Macadamia]

In case anyone is worried about me, just a quick note to say I am still alive. I am reinstating Zoloft and will be at 100mg in a few days. I'm feeling a lot better, but still not quite up to snuff. I don't think I will be able to get off this drug unless I can fix the underlying ME/CFS. For people who are generally healthy, it may be a different situation.

 

[Macadamia]

Hi all, I got an automated message to come back for a visit and let everyone know how I'm doing (or something to that effect).

 

I've been back on 100mg of Zoloft for a year. I've gone from a horrible crash of being near bedridden and needing help taking a shower, to my "sick normal" which is mostly housebound. I've tapered off Clonazepam successfully. In general, I feel decent as long as I pace myself and don't over do things. I am doing well within the limitations of the ME/CFS. 

 

I still agree with my statement that I won't be able to get off this drug until I fix the underlying problem of the ME/CFS. I believe that the same problem that causes my ME/CFS is also causing my anxiety/OCD. 

 

I believe that the underlying problem for both for me is mercury toxicity.  I am doing the Andrew Hall Cutler mercury chelation protocol to remove the mercury. It's still early days, but I've made a bit of progress both physically and mentally. I looked back at my symptom journal and noticed I used to be on 150mg Zoloft. Now 100mg is working fine.

 

Just FYI, there are many people with mental health issues at the Cutler Facebook forum, and many of them are getting better. 

Good luck to everyone on here with their mental health. 

[Altostrata]

Good to hear, Macadamia. Please let us know how you're doing.

[Macadamia]

I forgot to mention, the wake-ups and rapid heartbeats during sleep I was complaining about turned out be genuine sleep apnea. I got a CPAP and things are much better with sleep. I actually wake up feeling well rested. Imagine that! :-)

 

I got a Phillips Respironics Dreamwear mask and a Resmed auto CPAP with humidifier. The equipment is so much more comfortable and user friendly nowadays than it used to be. The mask is very minimal and comfortable, and the machine adjusts the amount of air and humidity needed on the fly. 

 

I will try and stop back and let you all know how I'm doing from time to time, assuming I keep getting reminders to do so. 

 

Thanks for everyone's support on here. 

[Macadamia]

Hi all, 
I thought I would give you an update. An interesting thing happened. I was chelating and having mixed results - a few things improved, but some other things got worse.

I had a dentist at the Cutler group look at my bitewing xrays. It turns out there was still a speck of mercury in my gum, which is not good. No wonder I was having mixed results. I had my dentist remove the speck, and also had my crown removed to check under that (you can't see through metal/porcelain crowns with an xray). I got more xrays to make sure everything was clear, which it was. 

 

Here's the interesting part - I was still having a bit of an issue with some mild OCD death thoughts in the evening. Three days after I got the speck out, I noticed they were GONE. That was about a month ago and they remain gone. I have also noticed a few other small improvements in the physical realm. 

I'll be able to resume chelation when some DMSA I ordered comes in. I'm expecting that things will go smoother this time. 

[starryskies]

Hello Macadamia! 
Just saying hello. Fellow ME/CFS sufferer here, thinking about starting the Cutler protocol (but haven´t done a hair test yet - but next week at the dentist to get my bite wing x-rays). Sadly it seems I cannot taper further, cause it makes my insomnia unbearable, which in turn worsens my ME. Would love to hear how you´re doing with chelation. Right now I am almost hoping (crazy, I know) I got heavy metals, cause it offers hope for improvement.

[Macadamia]

Hello @starryskies

Here's an update on me - I've done 2 rounds of DMSA after the speck removal so far. I've noticed continued improvement in that if I do something physical, the post exertional malaise is lighter than I expected. Also I'm feeling more strength in my legs and can walk faster. Previously, at the grocery store, 85 year old ladies would be faster than me. Now I'm winning the "race" - lol. I also noticed this morning that where my inner forearms used to be lumpy if you rubbed your fingers on them, now they're smooth. I think it was some kind of lymph thing. Not sure. 

 

So I'm feel like I'm going in a positive direction, and I'm excited to do more rounds. 

 

If you've ever had amalgam fillings, and you have ME/CFS and mental health issues, I would say the odds are you have mercury. Or at least it's something to try to rule in or out. There are many people like us at the Cutler forums. 

[Macadamia]

I've finished 6 rounds of DMSA. I've had longstanding delayed sleep phase issue (like decades). All of sudden, without any effort on my part, I started waking up an hour earlier than normal. With the time change, now I'm waking up about 9am. This is pretty much of a miracle. 

I had a very interesting visit with my psychiatric nurse practitioner. There was a medical student sitting in, so I don't know if that had anything to do with it. Anyway, my NP asked what my good doc had me working on as far as my ME/CFS. I brought up that I was chelating out mercury. She asked about me trying to taper off Zoloft again (I was warned by her and my good doc to NEVER EVER try it again).

Somehow now it seems that if the chelation goes well, and I'm better physically from the ME/CFS, then I might be able to try another taper off Zoloft. Both would be giant miracles if they ever do happen. I was surprised how open she seemed to chelation, which is pretty out there for most medical people (and regular people too). 

[DaisyBell]

Hey there  Macadamia how are you doing? 

[Macadamia]

Hi, and thanks for checking in on me.

 

I'm still doing the Cutler chelation protocol and having some small, but very interesting results. I've done 27 rounds. I'm doing ALA for mercury and arsenic, and DMSA once a month for lead. 

 

I've had improvements in leg strength and balance, and am able to stand longer. I've been able to keep up with washing dishes on a consistent basis, which is new. When I bring the garbage cans up the driveway, it no longer feels like all the energy is sucking out of my legs and body with each step. 

 

I've had improvements in mental health (continued lessening of OCD death thoughts, though those can increase a bit on round , then decrease afterwards). Improvements in chemical sensitivities. I used a Sharpie marker for 20 minutes with no symptoms, which is like a miracle. Improvements in EMF sensitivity - I can use an infrared clicker with almost no symptoms. 

 

I'm currently struggling with tolerating magnesium, so my sleep has been bad for a month or so, as my feet will twitch and wake me up all night long. So I've had to take a bit of break. I have a new form of magnesium I just started, and I think this one will be good (magnesium malate). When I start getting some good sleep, then I will get back to chelating again.

 

With improvements in both mental and physical health that I've never had before, I feel cautiously optimistic that maybe I can get back to a normal kind of life one day. That would be a true miracle. 

 

[Macadamia]

Just popping back in to make an update on my progress with chelation. I'm on round #47. I'm still having progress in the same areas I mentioned before.

 

I've improved from 25% to 30% on Bell's Disability Scale (a modified disability scale for ME/CFS). This is more or less of a miracle, as I've been at 25% of normal for about 15 years. I was worse than that the first 5 years. I would still classify myself as mostly housebound, but things are a little easier to manage. 

 

As far as mental health, the OCD death thoughts during/after a chelation round seem to have turned into a vague worry about time passing too fast, which is milder than what I was experiencing previously. The round before the last one, I had a mood swing feeling depressed about the Kentucky tornado victims. 

[ChessieCat]

Thank you for continuing to provide an update.

 

I am glad that some things seem to be improving for you.