Jayde86: Is this as good as it gets?

[Jayde86]

Hello, I'm new here so this is going to be a long first post. 

Alright, here we go..

 

I'm a 34 year old Mother of one 8 year old girl. 

I was on Lexapro for 7 years. Started at 10mg and went up to 20mg. Back in the fall/winter of 2016 I decided I wanted off my ssri because I didn't want to be dependent on any pharmaceutical anymore. They were also starting to not work like they did in the beginning and I had a 4 year old at the time just starting school and I didn't want her to grow up watching her Mommy turn to a bottle of pills to deal with her mental health. I wanted to model a more natural way of dealing with anxiety/depression. I began getting into meditation, yoga, eating clean organic non GMO foods as much as possible, started journaling and basically feeling my feelings instead of masking them with a pill. 

So I started to taper down, but clearly much too quickly. To be honest, these pills come in 20mg tabs and 10mg tabs. So I would break the 10mg tab in half right down the line on them which was fine, but once I wanted to go from 5mg to 2.5mg it got tricky because my pill cutter couldn't evenly cut a half a pill in half again so I was pretty much not getting the exact same dose everytime on top of not knowing I had to stay on the new lowered dose longer than a week or 2 to stabilize. So one day my brain could be getting some crumbs equal to maybe 1.8mg (who knows) then the next week maybe the crumbs would equal 1.4mg. Needless to say, I was doing it all wrong and OMG the withdrawl I experienced 4 years ago and STILL am experiencing to a certain degree is nothing short of a nightmare! 

It started with the brain zaps, racing heart, sweaty shaky trembly body. Massive panic attacks, depression and anxiety. This went on for about 3 months then i seemed to be not too bad for about a month bit then all these other crazy symptoms began which I didn't connect to WD because I had that month of smooth sailing. So I thought I had a brain tumor or had Lyme or an autoimmune disease or was dying. I developed the most intense crushing headaches constantly that started in the base of my skull and went up and over my entire head to behind my eyes. I couldn't even move my eyes left or right. Every single day. Along with intense burning tight muscles that went from the base of my skull all the way down my spine (muscles attached to spine) into my hips constantly. 

Burning dry eyes, visual hallucinations sometimes, suicidal thoughts, rage, crying spells, dizziness, metallic taste in my mouth, dry cracked nostrils, tongue. And many many more symptoms. I didn't know what was happening. I didn't think it was from quitting my AD. So I ended up getting a CT scan which came back normal. No brain tumors. Went to see a neurologist and did the little eye following the pen test. Normal. He did try to put me on some meds but I turned him down bc I didn't want to be on any pHARMaceuticals anymore. 

I was getting blood taken on an almost weekly basis. All normal except a little bit of inflammation they said but no autoimmune diseases. I was baffled, scared, frustrated and oh SO overwhelmed with having to be a single parent to a 4 year old and walk her to school everyday and do all of the things all of the time by myself with no friends or family or help of any kind. Even the doctors and specialists I saw couldn't figure it out. I wanted to die but couldn't kill myself because I have a little girl who needs me and has only me. Nightmare. 

So, I ended up going to a chiropractor which took x-rays of my entire spine and he said I have slight scoliosis and "military neck" which is a straightening out of the cervical spine (neck). It had lost some of its "C" shape that a healthy neck should have so according to him my head wasn't sitting right on my c1 (and other vertabre) and recommended I get an adjustment 3x/week at $50 a pop! That's $600/mo and as a single parent on disability I was dipping into some grocery money just to go get these adjustments by bus bc I don't drive. So I did that for a little over a year. Didn't do much. Maybe a bit of a placebo effect briefly but my "flares" would always come back full force so I eventually decided to just stop going to the chiropractors because I really couldn't afford it anymore anyway. 

Then in 2018 I stumbled across Dr. John Sarno's work on TMS (tension myositis syndrome) bought and read all his books and bought and read the book called The Great Pain Deception by Steve Ozanich and I read myself on every page and figured omg this is whats wrong with me! All my pain and problems are from repressed emotions. So I started to listen to the podcasts on TMS, do the journaling work more often and try to think psychological instead of physical like Dr. Sarno always said to do. That apparently people with TMS have a problem with their minds and not in their bodies. (My favorite saying in the TMS community that Nicole Sachs always says: "the problem is not in your head but the solution is not in your body.") 

So anyway, after doing TMS work for over a year I noticed quite an improvement with my daily crushing headache. But I would still get flares at times and still had muscle pain that went up and down in intensity. 

It wasn't until one day it popped in my head that just maybe all of this is from quitting my ssri in 2016 so I went on the hunt for info and came across this site and Facebook groups. And now I'm certain 100% that my nervous system isn't operating properly bc of the damage done from the meds I was on. But I still do believe that on top of WD, I believe I do suffer from TMS as well which exacberates my WD symptoms and maybe thats why, 4 years later, I'm still having flares (or windows and waves as it's called here) the thing is though, even when I'm in a window, it's not like ALL my symptoms are completely gone and I feel totally normal, a window for me is just a significant decrease in the intensity of my headache, and widespread  muscle pain. I have yet, in 4 years, felt no symptoms at all and I'm beyond worried that maybe my nervous system has healed as much as it can by this point and maybe this is as good as it gets? I sure hope not! I'm no where near "back to normal." I still get certain weeks where I'm constantly lightheaded, panic attacks, insomnia because of being unable to get comfortable with the constant tight burning aching hip/back/neck muscles and I either always have a tiny bit of pressure in my head, enough to let me know that its there just waiting to get all flared up, or higher intensity of head pressure. So my whole life now, these past 4 years has been me not knowing what the next hour is going to bring me pain-wise. Always on my yoga mat stretching and light exercise. Meditating. Salt baths. Using my acupressure mat on the floor, spraying my body with numbing spray, using my TENS unit just to be able to make dinner or take my daughter to the park. It's taken over my life and has robbed me of my one and only experience of parenthood and has robbed my daughter of having the kind of Mother she deserves. We have no one else at all. 0 family members. 0 friends. And now because of covid, I pulled her out of school in Jan 2020 to homeschool which is near impossible given the state of my health. She has no friends to play with a mom always on the floor moaning and sleep deprived. Please tell me that my nervous system will continue to heal on its own and this is NOT as good as it gets! Because if I didn't have my daughter I'd choose to not be here anymore.

 

Thanks so much for those who've read this far. Xo

Edited May 9, 2021 by Gridley

[Gridley]

Welcome to SA, Jayde86.  Just to start, let me tell you with assurance that your nervous system is continuing to heal and will continue to heal on its own and this is not as good as it gets.

 

To give members the best information, we ask them to summarize their medication history in a signature -- drugs, doses, dates, and discontinuations.  Basically, just the tapering information in your post with doses and dates.  Symptoms are not necessary.  You can include dates when improvements started to be notice and something like "continuing withdrawal symptoms to present date."

 

Account Settings – Create or Edit a signature.

 

You are experiencing protracted withdrawal syndrome, known as PAWS.  The symptoms you describe are typical.  You are not alone.  There are many members on this site with PAWS and they are healing.  The healing process is slow and frustrating but is ongoing every minute of the day, even if you aren't aware of it.  That has been our experience here.  So what you are experiencing is "normal."  So that you have a better idea of what you're undergoing, here is some information on PAWS, withdrawal and the healing process.

 

Protracted Withdrawal or PAWS (post-acute withdrawal ...

 

What is withdrawal syndrome.

 

Daily Checklist of Antidepressant Withdrawal Symptoms (PDF) 

 

This link is about the windows you describe.

 

The Windows and Waves Pattern of Stabilization

 

When we take psychiatric medications, the CNS (central nervous system) responds by making changes over the months and years we take the drug(s). When the medication is discontinued, the CNS has to undo all the changes it made. Rebuilding the neurotransmitter production and reactivating the receptor and transporter cells takes time -- during that rebuilding process symptoms occur.  

 

These explain the healing process really well.

 

Brain Remodelling 

 

Video:  Healing From Antidepressants - Patterns of Recovery

 

We don't recommend a lot of supplements on SA, as many members report being sensitive to them due to our over-reactive nervous systems, but two supplements that we do recommend are magnesium and omega 3 (fish oil). Many people find these to be calming to the nervous system. 

 

Magnesium, nature's calcium channel blocker 

 

Omega-3 fatty acids (fish oil) 

 

Add in one at a time and at a low dose in case you do experience problems. Get supplements that are single ingredient (not mixed with other types of supplements).

 

This is your Introduction topic, where you can complete your drug signature, ask questions and connect with other members.  We're glad you found your way here.

 

 

 

 

 

Edited May 9, 2021 by Gridley

[Jayde86]

Hello,

 

Unfortunately I don't remember the dates of when i lowered and how fast i tapered. It was very quick and sporadically. I would have to even contact my doctor to get reminded of what year i started the medication. I have a very terrible memory as my life has been full of chaos and stress so it's all a giant blur that I've learned to block out for the most part with practice. 

I just know i was on lexapro for about 7 years and have been off for 4 years and i'm still experiencing withdrawal symptoms and it's taken over my life. I'm beyond fed up.

 

Thank you for the info. I will read it all thoroughly.

[Gridley]

On 5/12/2021 at 9:08 AM, Jayde86 said:

I just know i was on lexapro for about 7 years and have been off for 4 years and i'm still experiencing withdrawal symptoms and it's taken over my life. I'm beyond fed up.

 

Could you please put something like this in your drug signature:

 

Approximately 2010  Lexapro (+ mg if you remember your dosage)

Approximately 2017 fast, sporadic taper to zero

Present -- continuing withdrawal symptoms 

 

Please use the following link and press "save."  You'll need to use a computer rather than a phone.

 

Account Settings – Create or Edit a signature.

 

 

 

Edited May 13, 2021 by Gridley

[Jayde86]

Hello,

 

I just added my drug signature as best as i remember. 

 

I was wondering if you or anyone could tell me if my nervous system is healing on its own or if there is something i should be doing to help facilitate and speed up the process? 

I've been having frequent urination (only at nighttime) up to 12 times throughout the night. It's driving me crazy! It's been on and off like this for 4 years now. Same with intense muscle pain/achiness/stiffness. Right now mainly in my hips deeeep in each side. I delf massage so much with my thumbs and other massage tools but it only helps provide relief in the moment and soon after it's back. 

I do about 60 - 90 min of yin yoga a day, take epsom salt baths, use a TENS unit etc....but nothing helps long term and i have no quality sleep anymore which means i'm not healing at night because i rarely enter REM sleep where healing takes place. 

 

What should i do?? 😴😢

 

Thanks for your time.

[DataGuy]

Hi @Jayde86,

 

I think you are doing a good job, with the yoga, stretching, psychological work etc. Are you able to do more than light exercise? If not, light exercise is still a very good option.  Does the exercise improve your symptoms?

 

Frequent urination seems to be a common symptom among with in withdrawal. I'm not really sure how to improve that particular problem, but it should get better as you heal. 

 

I assume the epsom salts contain magnesium? How long have you been using these for? Do you use them every day? Have you ever taken a break from using them? Do you take any other supplements or meds? Drink any teas? Coffee? Or take anything else that might affect the nervous system (have a calming or stimulating effect)?

 

Here are some non-drug techniques that may help your symptoms. I find exercise and deep breathing techniques particularly helpful. For me it seems the only time I feel relaxed is after going for a long run. 

[Jayde86]

Hello,

 

Thank you. Yes, the exercise slightly helps improve my symptoms in the moment. Not long term. 

Just like yoga, salt baths, self massage etc...

I have to work out at home bc my child is always with me so i can't go to the gym. (Everything is locked down here anyway plus, i can't wear masks so i can't go anywhere) So i use resistance bands and light weights at home every second day for 30min - 1hr. 

 

Yes the epsom salts contain magnesium. They really help in the moment. While i'm in the bath but about 30min after i get out all my muscles are tight again usually. I've been using them a few times a week for years. I've taken days off from using them when I've ran out (like this week for instance) So i've been forced to bathe in plain water instead just to feel the warmth on my body. Missing the salts though. (even if they are just a placebo)

I take supplements but not consistently. Certain times of the month. I've got D3, Vit C, Magnesium, Vit E i just ordered should be here soon, going to try fish oil soon, women's one a day multivitamin. They are all organic non gmo. No synthetics, fillers etc... top of the line. 

I also drink this herbal drink my old chiropractor recommended to me a couple years ago. It's called Ionix Supreme by Isagenix. Excellent adaptogenic herbs great for stress, sleep, adrenal fatigue, boosts immune system. High antioxidants.

What really bothers me though is my symptoms go up and down up and down up and down randomly within minutes! Doesn't matter if i don't take my supplements, or if i do. (I really only take them to keep my immune system strong considering what we're all living through with covid.....)

So are they helping my WD? Doubt it. Are they hurting it? Doubt that too. I've been off them all and on them all and still get the ups and downs of WD.

I drink herbal teas at times. Valerian root for sleep, chamomile etc....but since i'm back to urinating up to 12 times a night i don't drink 4 hrs before bed. (not that it seems to be helping lessen the number of trips i make to the washroom nightly......) I only have 1 small cup of coffee in the morning to keep me regular or else i'd be constipated. That seems to have little to no effect on my symptoms. 

 

Thank you for that link. I will check it out.

 

My #1 main question is, is it common for people in protracted WD to never have moments of NO symptoms whatsoever? Like for instance, say today i wake up and my hips that have been killing me for weeks finally don't hurt BUT now my anxiety is through the roof! Or, all of a sudden my anxiety goes away but now my back again is so tight and achy. I either always have 1 symptom or a combination of a few but never do i have them all disappear at the same time which is VERY discouraging after 4 years of this because it makes me feel like this is as far healed as i'm going to get. I think this way because the past year and a half i haven't seen any grand improvements or even small ones. Still the same up and down BS. I'd love to know if i'll ever be in a "window" that is free from all symptoms! My "windows" are really just a decrease in intensity of a "wave" if that makes sense. 

Is this common? Or is it more common for a persons "windows" to be completely clear of all symptoms until their next wave?

Hope that all made sense.

 

Thanks for reading.   

 

 

[DataGuy]

Hi @Jayde86,

 

I wouldn't say it's normal to never have no symptoms 4 years off, but there have been plenty of members who have had that problem. Nothing about this is normal. It's possible I will end up having symptoms 4 years off as well. As I said, I don't think you are doing anything wrong, but if you want to try something different and see if it results in some improvement, you could avoid supplements, teas, magnesium, vitamins etc. for a few months and see if that helps. I looked up the ionix supplement and see that it has Ashwaghanda in it, which I believe has an effect on the nervous system. Chamomile and Valerian I believe also have calming effects. The idea behind avoiding these is that to get back to normal, your nervous system needs to have feedback that it is in an excessively active state. Supplements that have a calming effect can counteract this and send the wrong message, preventing various receptor systems like GABA from upregulating. It is also possible they are doing more harm than good. After all, these compounds have not been tested for this condition. As I understand it from reading various evidence-based medicine researchers, the probability that some untested supplement or compound actually improves your health rather than hurts it (or does nothing) is very low. Maybe less than 1%. You just need to look to COVID-19 for an example. They ran hundreds of drug trials trying to find something that worked on it, and there was only 1 or 2 that ended up improving patient outcomes, and these ones (dexamethasone and another corticosteroid) only improved things marginally. I think it is important to understand your body knows what to do to heal. It doesn't need the help of supplements or drugs, which mostly just appeared in the last hundred years. You're welcome to continue taking them, but it might be a good experiment to try going a few months without them. It will probably save you a bit of money, too. If you want to read exactly why things like this need to be tested rigorously for any condition before we should try them, I'd recommend "Medical Reversal" by Vinay Prasad and Adam Cifu, MDs. They document exactly how difficult it seems to be to improve on our natural biology. 

 

Sorry it took so long to respond. Been busy dealing with a few problems of my own. Hope you are feeling better soon, Jayde. 

[Jayde86]

On 6/2/2021 at 9:51 AM, DataGuy said:

The idea behind avoiding these is that to get back to normal, your nervous system needs to have feedback that it is in an excessively active state. Supplements that have a calming effect can counteract this and send the wrong message, preventing various receptor systems like GABA from upregulating.

Hello, thank you for your response. Hope you're well.

 

So does this mean the crappier i feel and the more I allow my nervous system to be in an excessively active state the more I'll heal? By calming my nervous system down, does that stop healing? 

[Jayde86]

I'm going to give that a try. I'll stop all the supplementing for a few months and see how I feel. 

I was going to get a quality fish oil as recommended to take with my evening magnesium capsule but do you think I should hold off on doing that as well? Or stop taking everything else except those 2 things? 

 

Jayde

[DataGuy]

22 hours ago, Jayde86 said:

Hello, thank you for your response. Hope you're well.

 

So does this mean the crappier i feel and the more I allow my nervous system to be in an excessively active state the more I'll heal? By calming my nervous system down, does that stop healing? 

 

It is not necessarily the crappier you feel, the faster you heal. It is still important to do behavioral therapies like stretching, exercise etc to make yourself feel better and keep healthy. It's more like you want to avoid sending signals to your system that it will be calmed by foreign substances. Of course you can always keep those in reserve if you really feel you need them, but if you can avoid them or use them sparingly, that is best. 

 

 

22 hours ago, Jayde86 said:

I'm going to give that a try. I'll stop all the supplementing for a few months and see how I feel. 

I was going to get a quality fish oil as recommended to take with my evening magnesium capsule but do you think I should hold off on doing that as well? Or stop taking everything else except those 2 things? 

 

Jayde

 

 

Magnesium is a natural calcium channel blocker and has nervous system calming effects. We don't really know if this will help or hinder healing, but in theory it would act like a mild medication and may hinder it. Theory is not always a great guide for behavior, but there is also the fact that most supplements / drugs (99%+) tested do not actually improve health. So by avoiding it you are certainly playing the odds in your favor. If it doesn't work, you can always reinstate it. I think I would recommend tapering it if you have been using it regularly for a long time. It has definite pharmacological effects on the nervous system. 

[Mascasa]

Can I get clarification on the magnesium as a supplement? I read in one of the topics that it is suggested to use magnesium and omega 3 as the only supplements that can be of some benefit as you taper or to help with withdrawals. Can you clarify that for me? I currently use a magnesium glycinate ( a brand recommended by the SA.) I am planning on eliminating some of my supplements per my reading here. Have to keep calcium and vitamin d due to osteoporosis. Thank you.