Dejavu: can anyone tell me what's going on?

[Dejavu]

@Altostrata

Tuesday February 15

8:30a -  woke up - 6.5 hrs sleep - woke 2 x 

                  during night

              Anxiety 7/10

              Hand tremor 5/10

              Leg weakness 5/10

              Blurred vision (left eye)  3/10

              Whole body agitation/muscle

                   tension 6/10

 9:00a - Crying spell; worked in office (I

                    work from home)

               Leg weakness 6/10

Hand tremor 6/10

               Anxiety 7/10

               Brain fog 4/10

               Headache 7/10 (likely sinus issues

                   unrelated to wd)

               Whole body agitation/muscle

                   tension 6/10

12:00p - Lunch - no appetite - ate 3                                  pieces of cheese

                Anxiety 5/10

                Hand tremor 4/10

                Leg weakness 4/10

                Depression 4/10

                Headache 7/10

                Whole body agitation/muscle

                     tension 5/10

3:00p -    Anxiety 5/10

                Hand tremor 5/10

                Leg weakness 4/10

                Crying spell

                Ate large banana

                Blurred vision (left eye)  3/10

                Whole body agitation/muscle

                     tension 3/10

                 Fatigue 4/10

                Headache 6/10

4:00p -    Whole body agitation/muscle

                     tension gone - drowsy - 30                            min nap - felt better on

                      waking

6:00p -    Picked up daughter - car trouble

                Got some bad news

                Anxiety 4/10

                Hand Tremor 4/10

                Leg Weakness 4/10

                Headache - 7/10

7:30p -    Dinner - chicken/onion 

                     stirfry and smoothie

8:00p -    Anxiety spike - haven't had one of

                     these in weeks - resolved                                quickly

                 Palps 2/10 - resolved quickly

                 Sore muscles 4/10

9:30p -     Crying spell 

                 Anxiety 2/11

                 Hand Tremor 5/10

                 Leg Weakness 3/10

                 Headache - 4/10   

10:00p -   Took 20mg liquid sertraline

                  All symptoms same as above

11:30p -   Sore Muscles 5/10

                  Tingling in feet and hands 2/10

                 All other symptoms same as                           above

                 Took 100mg magnesium   

12:00a -   Bed - fell asleep around 2a       

[Altostrata]

I don't see a problem with your method.

[Dejavu]

@Altostrata

Wednesday February 16
8:30a -  woke up - 6.5 hrs sleep - slept

                     straight through
              Crying spell
              Anxiety 5/10            
              Hand tremor 4/10
              Leg weakness 4/10
              Whole body agitation/muscle
                   tension 2/10
              Blurred vision (left eye)  3/10
              Slightly less shaky in shower than
                   usual
10:30a - Ran errands w/hub
                Anxiety 4/10
                Depression 8/10
                Crying spell

Leg weakness 3/10

               Hand tremor 3/10

               Brain fog 5/10

               Headache 2/10 (likely sinus issues

                   unrelated to wd)

               Whole body agitation/muscle

                   tension 4/10        

12:00p - Lunch - turkey and cheese

                Anxiety 3/10

                Hand tremor 3/10

                Leg weakness 3/10

                Depression 4/10

                Headache 2/10

                Whole body agitation/muscle

                     tension absent

Brain fog absent

2pm -       Diarrhea

                 Hand tremor 5/10

                 Leg weakness 4/10

                 Depression absent

                 Anxiety 4/10

4pm -       Tingling/pins&needles in rt. foot 

                      and rt hand 2/10

                  Hand tremor 4/10

                  Anxiety 3/10

                  Leg weakness 3/10

                  Headache 3/10

                  Snack - smoothie

6pm -        Depression 5/10

                  Crying spell

                  Tingling and headache absent

All other symptoms same as above

8:00p -      Dinner - Mexican food order-in

                  Anxiety 2/10

                  Hand tremor 3/10

                  Leg weakness 2/10

                  Diarrhea (before dinner)

                  Depression absent

                  Tingling and headache absent

                  Whole body agitation/muscle

                       tension absent

9:30p -      Hand Tremor 6/10

                  Leg Weakness 6/10 which

                       caused:

                  Anxiety 6/10

                  Did some light arm weights    10:00p -   Took 20mg liquid sertraline

                 Crying spell; practiced CBT tools                   Anxiety 5/10

                 Depression 4/10

                 Hand Tremor 4/10

                 Leg Weakness 5/10

                All other symptoms same as 

                   above

10:30p -    Drowsy

                   Hand tremor 3/10

                   Tingling skin 2/10 

                   All other symptoms same as

                       above

12:30a -    Tingling in feet and hands 3/10

                   Took 100mg magnesium   

                   Anxiety 1/10

                   Bed - fell asleep around 1:30a   

           

 

 

[Altostrata]

On 2/15/2022 at 8:36 PM, Dejavu said:

Given that some of these are my major symptoms, do you think it's prudent for me to hold my dose until my air ducts are replaced and my home cleaned?

 

Do you feel better or worse after you take 20mg sertraline at 10 p.m.?

 

If better or the same, you might hold at this level until the mold is cleared out. Mold contamination can be very serious.

[SonnyEvans]

Hey Dejavu. Im brand new here, and your story sounds so similar to mine. Im on mobile so typing my whole story out is exhausting but basically I was put on zoloft 6 years ago for low mood. Yes low mood— not the crippling depression and anxiety I have now. I took the meds pretty much because i had a job I hated and woke up crying most days. I should have just quit, but instead i stayed for a year thanks to Zoloft. 
 

started a new job later that I absolutely loved (in the university bookstore in my city) and so I thought id stop taking zoloft as I was in a much better place. My GP also told me how mild of a dose I was on (50mg a day) so he said i could just cold turkey— so I did. Felt amazing for 2 months until the hours at the job dried up and I had to seek summer employment. On my first day I started having tingling in my hands and feet, couldnt catch my breath or regulate my body temperature. Then these realizations cascaded me into my first of many panic attacks. I had to quit the job As I was too embarrassed to be having all this stuff happen to me while I was expected to learn a new job. i then spent an entire year trying to get into see a psychiatrist and therapist who ended up not being a good fit for me. Asked for a new psychiatrist and was told there werent any available in the city im in. So after my psychiatrist tried me on effexor(made me suicidal) and lamactal (just made me suuuuuper depressed) so after a few months of trial and error I asked to be put back on zoloft and I discontinued seeing my doctor because he was just a pill pusher. 
 

now its been about 3 years since Ive seen my doctor. For some reason they refill my zoloft prescription but havent asked to see me in all this time. So I am now tapered down to 25mg and eventually quit for 3 weeks. Cold turkey no zoloft for 3 weeks felt fine until my sweet cat became ill and could pass any day, so I wasnt taking care of myself in favor of looking after her. Now about a month after quitting zoloft I have to reinstate 25mg as I am starting to lose it. 
i havent worked since before covid. If anything covid was nice because everyone went to work from

home so im not alone all day in bed. 
 

anyway thats my story. I feel you and I have both been duped by our doctors. Its criminal what they do to us by giving us generic anecdotal statements about how these meds work for others— they must work for me. 
i have forgiven my GP(he is the one who had me on zoloft in the first place) but i expected more from my psychiatrist. I refuse to see him ever again. 

[Dejavu]

@Altostrata Generally, I feel better at night. I haven't noticed any symptom relief specifically related to dosing, but it certainly doesn't worsen them. I will hold until the mold remediation. Shall I continue to post my daily notes, or begin again after the remediation? I'm guessing the latter, but don't want to stop unless you advise.

 

Yes, I've read that some of the symptoms of mold inhalation mimic those of withdrawal: headaches, dizziness, anxiety, depression, etc. This is a shocking development for us. Glad we caught it before it got any worse.

Edited February 17, 2022 by Dejavu

[Altostrata]

We don't have to see your daily notes until you're clear of the mold contamination. Good that you found out about this health hazard. You may feel a lot better soon.

[Dejavu]

Will do. Thank you @Altostrata. I'm sorry to have wasted your time. 

[Altostrata]

Not at all a waste! You are a treasured member of the community.

[sunnysideup69]

Hey @Dejavu,

Have only just popped in and seen your comment from 15th Feb. Good to see you, but sorry it's in these circumstances, eh? Hopefully as your mold situation is sorted, you will notice a lessening of some symptoms. How r u feeling at the mo?

[Erell]

Hello @Dejavu, How are you doing ?

[Dejavu]

@sunnysideup69 and @Erell, thank you, lovely ladies, for checking on me. Update:

 

I hope it's okay if I vent a little. I feel very alone.

 

The mold situation in the house was remediated in early March, and subsequent testing showed the air quality in the house to be normal again. A couple of weeks later, I had an absolutely lovely window of about ten days. All symptoms low; most completely absent. I'd hoped that I was finally stabilizing after an almost 2 year hold. But then, the die-off of the mycotoxins in our bodies began, and my husband and I both got much worse. He has suffered from head pressure, congestion, dizziness and fatigue, and I dropped into a nasty wave, where I've been ever since. Is it toxicity or withdrawal, or both? Who knows? The symptoms are the same. Does it even matter? A friend of mine suffered from toxic mold exposure, and told me she was unable to get off the couch for 6 months before she recovered. 

 

Also, in an insurance snafu, I lost my therapist (a withdrawal-savvy one), right in the midst of some intense trauma work we were doing. So now I have nowhere to offload my extreme anxiety (mostly manifesting in health anxiety these days). Due to the trauma of seeing my Mom, my Sister and my Uncle (who was like my dad) die within months of each other, and watching my Mom suffer terribly in the two years leading to her death, plus the pandemic, I've been mortally afraid of doctors for the past 4 years, and haven't had a check-up or any medical attention at all for 3 years (other than the pdoc who was my prescriber). But the state of my health anxiety has now pushed me to the point of having to see a doctor to convince myself that what I'm going through is indeed withdrawal and mold detox, and not any of the many diseases I've given myself in the past few weeks. Appointment in 3 weeks, so 3+ more weeks of fear and dread. Delightful.

 

I'm tortured by the fact that I've held my sertraline dose at 20 mg for 2 years now, and have only had 2 windows in that time. I tell myself that stabilization has eluded me so far due to the toxic mold situation, grief over losing so many family so close together, and PTSD around the pandemic. But surely the quality of those windows (both were very profound in terms of symptom improvement) and the fact that they occurred at all means that I will stabilize?

 

Like most people here, I'm just exhausted. And quickly losing hope. If this is the way I'm going to live out the rest of my days, I'm just not interested. Thanks for listening. I can't vent to my sweet husband - he's been terrific, but he has his own battle right now, which I'm not able to help him with, but the least I can do is not give him more to worry about. I've lost my therapist, I don't want to worry my children (all single moms with their own issues), and my best friend (my Mom) is gone. So being able to come here for some support and reassurance means everything.

[arbor]

Dear @Dejavu--Thank you for writing this and sharing how you're doing.  I'm so, so sorry that you've had such losses, and especially while dealing with recovery.  I'm glad you're sharing and not keeping it to yourself.  It's hard to find a good therapist.  I hope you do soon.  What a whammy to also have the mold problem.  

22 hours ago, Dejavu said:

I'm tortured by the fact that I've held my sertraline dose at 20 mg for 2 years now, and have only had 2 windows in that time. I tell myself that stabilization has eluded me so far due to the toxic mold situation, grief over losing so many family so close together, and PTSD around the pandemic. But surely the quality of those windows (both were very profound in terms of symptom improvement) and the fact that they occurred at all means that I will stabilize?

Yes, I can see why you'd be having questions.  I do believe you can stabilize, though I don't feel experienced enough to say whether that would be while on sertraline or off.  Two years is a long time, but others may be able to weigh in on that question.  That you had the windows, to me, means recovery is possible.  I hope the mold is gone.  I know it's tricky.

 

Please know I'm thinking of you, and send hugs and healing wishes,

Arbor

[Dejavu]

@arbor, thank you so much for the kind words. They truly mean a lot. I hope you have been well. I will pop over to your thread.

 

@Altostrata

Could I trouble you to weigh in on a few items? I apologize in advance for the length of this post, but I'm really in uncharted waters. My husband and I have discussed this at length, but because the situation is highly unusual, and due to brain fog (his from mold exposure; mine from mold exposure and/or withdrawal - who knows?), neither of us has a clue what to do. Neither does the mold expert or my husband's doctor. The mold guy knows nothing about ADWD, (other than to say that mold toxicity can and usually does worsen any pre-existing condition), and the doctor, of course, doesn't believe in protracted WD. I've never felt so alone.

 

The mold situation in our home has now been fully remediated. Air quality tests show normal interior levels, so we are good on that. However, we are still dealing with mycotoxin die-off in our bloodstreams, which has made both of us really sick. My husband is starting to see slight improvement, but in my case, it's hard to tease out which symptoms are mold v. withdrawal. Both conditions share many symptoms. Since it is estimated that the spores were present in our AC ducts for as much as 5 years, we have been advised that our recovery from mold toxicity will in all likelihood, take several months at least. We're 3 months in at this point. 

 

I had fully stabilized from a rapid taper of sertraline in 2019. It took me almost a year to get there, but when I did, I was pretty much 100% for a solid 8 months before a series of unfortunate tapering mistakes sent me down the rabbit hole again in July of 2020. I've been holding my dose since then, and even though I've had a couple of short "weak" windows and 2 really strong ones (95-100% normal for a couple of weeks each) in the past 11 months, I'm still not stable. (The first 12 months were just as bad as the initial crash, with no windows at all.)

 

Since I'm given to understand that mold toxicity can cause a host of issues, and can exacerbate many others, I'm hoping that's what has been keeping me from reaching stability this time around. Do you believe that's a plausible explanation? Before the mold was discovered, I was flirting with the idea of a small test cut, and had begun posting my daily notes for your review, but the mold situation interrupted that, and you wisely advised me to stay put on my dose. But I'm concerned that 2 years is a long time to hold. I'm concerned with the possibility that some of my symptoms are actually adverse reactions to the sertraline, as I am a known slow metabolizer of it, and it has been steady state in my system at 20mgs for 24 months now. My two biggest symptoms - hand tremor and leg weakness - have always been present while on this drug - even before tapering - and absent during the times I've come off of it (which would indicate ADR). But oddly, these two symptoms go almost completely away during windows as well (which would indicate WD symptoms). So I'm really confused as to whether I should:

 

1. Continue to hold, since I am finally seeing some windows, and put the amount of time it's taken me to stabilize down to environmental toxicity, crazy stress regarding pandemic, finances and health issues (the latter was very scary, since we didn't know what was causing our symptoms before the mold was found - my husband's were particularly alarming), or;

 

2. Wait for this current wave to abate (going on 2 months now), then attempt a small taper of 1-2%. I'm not sure that amount would be enough to even notice an improvement in ADR, but if it didn't make things worse, it could at least give me the green light to keep going.

 

I would also like to know if, given my slow metabolizer status, I should hold longer than 4 weeks between cuts? My limited taper history seems to call for it: first cut was 5% - almost painless; next month 10% - noticeably rougher, but I came around before the month was up. I didn't care for that, so the following month, I attempted a Brassmonkey Slide. I made the first two cuts, found I couldn't make the third for 3 weeks, and never made the 4th. I knew something was off, so I held at that point, and crashed 6 weeks later. My point being that even though I felt "ready" to cut again  after the first and second cuts, apparently I was not. My theory is that my overworked liver, already operating slowly on the sertraline, and also overburdened with processing mold mycotoxins, allows these cuts to pile up, and so it needs more time than a month to clear the drug. Plausible? And if this is indeed the case, should I go ahead and resume my taper now, lowering my drug burden to give my liver a break? I just don't know what to do, and fear the consequences of doing the wrong thing. I know how harsh that penalty can be.

 

Trying to anticipate your questions so that you don't have to chase me for answers:

 

I'm taking 20mg generic sertraline in homemade solution. It is the same brand each month. I make 2 doses every other day and refrigerate them.

 

I don't feel any better or worse before or after dosing, except that during a wave, my tinnitus noticeably increases about 20 minutes after dosing and lasts for several hours. When I'm stable or in a window, I don't notice any increase. I have had tinnitus ever since I've been on sertraline, but normally it's fairly quiet and not much of an issue.

 

I take 200mg of mag glycinate in split doses, morning and evening, and 500 mg of acetaminophen at night for bulging neck disc. 1000 mg vitamin C every morning for mold die-off. No other drugs or supplements. I never notice adverse reactions to any of them. Note: none of these is the tinnitus culprit.

 

I know there's no way to know with certainty what the next right step might be. But no one - literally no one but you - is knowledgeable enough to even make an educated guess. If you could keep this from becoming a coin-toss for me, I'd be very grateful. Again, sorry for the novella. 

 

 

[ChessieCat]

Q:  Is your husband taking any drugs/reducing any drugs?  If the answer to this question is no then I'm thinking that you can use his symptoms and recovery from them as a guide.  So if he is still having symptoms then I think it is most likely that your own symptoms are caused by the toxins, or at the very least contributing to your symptoms.

 

If he is still having symptoms them I think you should hold until after his symptoms have resolved.  Depending on how you are feeling, ie if you are noticing improvement, you could hold for longer or make a very small test reduction, eg 0.5% or 1%, or even less if you are really concerned.

[Dejavu]

@ChessieCat, you make a good point. Unfortunately, he has just discontinued the antihistamine he's been taking for 3 years, but he had many of the same symptoms prior to discontinuation that he has now. He was also taking a binder for a couple of weeks, but found that the increased the rate of die-off sent his symptoms into overdrive, so he stopped that a month ago. (The binder was offered to me as well, but I knew better.) Nevertheless, he's still very symptomatic, so I guess it's reasonable to assume that I am as well.

 

I imagine you could say I have improved, in that I've had two really good windows, one last Thanksgiving and another 2 months ago. Before that, no windows at all for a year. Since I'm currently and most definitely in a wave, I have no choice but to hold a while longer. 

 

Thank you very much for such a quick response to a long, rambling post. I hope you are doing very well in your post-pristiq reality. You have been an inspiration and comfort to me too many times to count. Thank you CC!!!

[Altostrata]

If I were you, I'd work on recovering from the mold exposure for a while and not make any dosage changes, or you'll still be confused about what symptoms are what.

[Dejavu]

If @Altostrata and @ChessieCat advise me to hold, that's good enough for me. Thank you both so much. This is so hard, and I feel so rotten. It's a blessing to know there are people who truly understand and care. If it's okay, I'll reach out in a month or two with an update and seek your advice about tapering again at that time.

[wantrelief]

Hello @Dejavu:  Thank you so much for your note on my thread.  I am so sorry for everything you've been through - you are a true survivor.  I have hope that you will stabilize given you have experienced strong windows where things really settled down for you.  You are in my heart as I know how hard it is to be struggling like this for so long.  You are incredibly brave and courageous.  I will be thinking of you and am here if you need any support.....you are not alone. 💖

 

[Dejavu]

Thank you @wantrelief. That means so much more than you realize. I have a wonderfully supportive family, especially my husband. But he's got his own battle to fight right now, and my daily emotional meltdowns do not help his condition. I feel like my friends and family are tired of hearing about my problems, and I literally cannot focus on anything else, so I'm not exactly great company for them. So I stay away from everybody. There's no way they can understand the absolutely mind-bending terror that grips me for no real reason the minute I wake up each morning and hangs over me until I mercifully fall asleep at night, only to awaken too soon and have it start all over again. I'm very lonely. Pathetic, I know.

[wantrelief]

Oh my goodness, you are not pathetic AT ALL @Dejavu.  I am really sorry your husband has been so sick as well.....that has got to be incredibly stressful for you on top of everything you are already dealing with.  I really hope both of you get some relief very soon.  

 

I know what you mean about feeling like your friends and family are tired of hearing about your problems.  I don't think anyone knows what to think about me anymore!  My husband (I also met mine later in life!) is super supportive but there is only so much one person can take so I try not to lean too much on him. 

 

I also know exactly what you mean about not being able to focus on anything else.  It is so hard for me to concentrate on anything as my poor brain is being flooded by a constant barrage of intrusive thoughts, including SI. It does calm down a bit at night but it is still there.

 

Please know that you are the farthest thing from pathetic, my friend.

 

I am thinking of you and hoping you get another window very soon.....it will happen!!

[Dejavu]

Just need to vent a bit.

Here is the most frustrating thing in my world right now:

 

AD Withdrawal Symptoms: Fatigue, weakness, muscle aches and cramps, headache, sensitivity to bright light, unusual pains, abdominal pain, nausea, diarrhea, joint pain with morning stiffness, cognitive impairment, skin issues, numbness and tingling, electric shock sensations, excessive thirst, metallic taste in mouth, disequilibrium and dizziness, appetite swings/weight gain or loss, anxiety and depression, mood swings, night sweats, frequent urination, body temp disregulation, tics and spasms, hair loss, fatigue, red eyes, blurred vision, memory issues, brain fog, word recollection issues, tremors.

 

Mold Toxicity Symptoms: See virtually everything above.

 

I have - or have had - every one of these symptoms in the past 5 years. I have had toxic mold in my home for around 5 years. I have been in withdrawal for almost 5 years. How can I possibly know which symptoms are from what? For all I know, it's ALL mold toxicity and I could be tapering again right now. Instead, I'm stuck holding the same dose for 2 freaking years now.

 

I'm 61 years old. The rest of my taper will take 4 years minimum. I have exactly zero years to waste. I. Am. Furious.

 

 

[Dejavu]

I'm reaching out for support and reassurance from the only people who know what this feels like. Please, if you're so inclined, an encouraging word would go a long way for me right now.

 

I've been holding this dose so long - 2 years to be exact. I had only two tiny windows of a day or two each in the first year, but did experience a very gradual lessening of symptoms overall (such that both my family and my therapist commented on my overall improvement). In fact, I didn't realize just how much better I'd gotten until this wave put me back to Square One. This year, I've had two clear windows where I was almost 100%. Each lasted for about 10 days to 2 weeks. And I have had many days that were "not too bad" interspersed here and there.

 

Unfortunately, we just learned 3 months ago that we have had a toxic mold infestation in our house for several years. My husband has been sick pretty much nonstop during that time, and no doctor could find the cause. And I've been trying, without success, to stabilize after a taper crash. Symptoms of mold toxicity are pretty much identical to withdrawal, and like withdrawal, recovery is slow. So there's no way for me to know how many of my symptoms are truly withdrawal and how many are mold toxicity. I find this maddening, but I'm thinking that the mold has played a part in why stability has eluded me.

 

So, after a really nice 2 week window in March, I began to slip slowly back into a wave. This coincides with the time that the mold was removed and the toxins have begun to die off in our bodies.  It has been a bad one. Tremendous amounts of anxiety and tearfulness - and all the rest of my "signature symptoms," slowly building in intensity over the past 2 months. Yesterday was really nasty, but today is even worse. This wave feels almost as bad as my initial crash and no signs of letting go. I had such a clear window before this wave set in, and I dared hope that I was turning the corner,  stability-wise. Even when that window closed, I told myself "okay, I've got this - all I have to do is wait out the symptoms until the next window," but now it seems that even my baseline has worsened. The insomnia, anxiety, SI and sense of utter hopelessness are brutal. I wake up too early with anxiety (actually, the anxiety starts in my dreams and wakes me up), and often I will put on a sleep meditation tape and try to get another hour. Sometimes it works, but other times it just seems to make the anxiety worse. Today it just got worse and worse the longer I laid there. So I got up and checked on my husband. When I found out that he too was struggling today (he has okay days and bad days - but never good ones - still suffering from mold toxicity), the hopelessness of it all just engulfed me and I truly wondered for a moment: what's the point of even being here? It is the worst moment I've had during this whole withdrawal ordeal, and I'll never forget it.

 

It's a feeling I dare not share with anyone, lest I end up hospitalized and drugged into oblivion. And the truth is, underneath the layers of nasty chemical depression and anxiety, there is still a tiny ray of hope. I'm almost afraid to acknowledge it's presence, since lately, the Universe seems to delight in taking away everything I hold dear. But it's there. The hope that whispers "Maybe you can do this. You're only on 1 drug for 5 years - many people who have been on multiple drug cocktails for decades have healed and come out the other side - there is no reason you cannot."  And maybe my struggles with stability really ARE due to breathing in toxic mold spores and not some defect in my character. And maybe my husband's struggles really ARE due to mold too, and not some strange exotic disease that no doctor can find. Maybe he WILL recover and not be taken from me after only a decade together. Maybe we WILL have some happy, peaceful years together. But I've been disappointed so many times, I no longer dare to hope for much. Because meanwhile, I'm still drinking 20mgs of sertraline every day for the past 2 years. I would have been down to somewhere between  2-5mgs by now if I could only have stabilized. My greatest fear is that I never will, and will either have to live on this poison the rest of my life, or start a taper while unstable and suffer all tbe way down.

 

I apologize to anyone reading this. I'm not always so doom and gloom. But the sudden worsening of this wave has really knocked the wind out of my sails. 

[wantrelief]

Oh @Dejavu I am so sorry this wave has worsened.  It seems very plausible that things are feeling worse due to the mold die off process, the stress of your husband not feeling well and then there is also the "battle fatigue" aspect to all of this.  It is beyond difficult to keep coping through a daily battle of these awful awful symptoms.

 

Those windows you had are significant in that your brain was able to "right itself" during this time of holding; it (your brain) is showing you that it is working hard to get back to homeostasis.

 

1 hour ago, Dejavu said:

And the truth is, underneath the layers of nasty chemical depression and anxiety, there is still a tiny ray of hope.

As hard as it is when being inundated with horrid symptoms, I think this is what you need to listen to.....that is your instinct telling you that you are indeed on the right path even if it doesn't feel remotely like you are.

[wantrelief]

I forgot to add that I have those very same thoughts you shared.....they are very compelling and feel so real but please recognize this is your compromised brain misfiring (or whatever it is doing).  Remember when you are in a window....I am guessing you didn't have any of those thoughts - that is the real you, not what your brain is telling you now.

[ChessieCat]

I think part of what you are experiencing is battle weariness and also the not knowing what the future holds because you are not currently tapering so you feel like you have no control.

 

Something that I was thinking yesterday was that it would be helpful for you to have a date.  Now please note that the date would not be set in stone, but just a point where you will reassess.

 

What I am thinking is:

 

Plan on making a reduction on a particular date in one month's time.  I think a small test reduction would be the best idea for your first reduction.  This will give you a "end point".  However please note that if things have not improved much during the month then set another date.

 

This might help you to feel like there will be an end because at the moment it probably feels endless.

[Dejavu]

3 hours ago, wantrelief said:

Remember when you are in a window....I am guessing you didn't have any of those thoughts - that is the real you, not what your brain is telling you now.

@wantrelief Right. I do not have those thoughts while in a window. What I do to myself during windows is almost as bad. I tend to believe that "it's over." When I first stabilized after my RI, I was rock-solid, at least 90% well. I was so relieved to have my life back that I failed to take into account that my system was still sensitive, and that I still had 26mgs of sertraline to taper. And of course, I did not know at the time that I was mold-toxic. I got careless, probably started my taper too soon, used some steroid nasal spray, had a few drinks, experimented with different tapering percentages and methods. I only made it down to 20mgs before I crashed again. And here I sit. 

 

You are lovely to prop me up, especially in the face of your own ugly wave. Please let me know how you're feeling. Seeing at least small improvement, I hope.

[wantrelief]

14 minutes ago, Dejavu said:

What I do to myself during windows is almost as bad. I tend to believe that "it's over." When I first stabilized after my RI, I was rock-solid, at least 90% well. I was so relieved to have my life back that I failed to take into account that my system was still sensitive

I do the same thing thinking it is over and I am stabilized now, all is well.  I think we must be gentle with ourselves as when the symptoms recede it feels like we are "normal" again so it is easy to forget that we are still sensitive.

 

17 minutes ago, Dejavu said:

Please let me know how you're feeling. Seeing at least small improvement, I hope.

Aw, thank you for asking.  I am not seeing any change so still riding this with you.  We will get there though......we've just got to keep hanging in there as hard (not even the word for it) as that is.  Everything is temporary.....this will change as it has before.

[Dejavu]

29 minutes ago, ChessieCat said:

I think part of what you are experiencing is battle weariness

Nail on head, @ChessieCat. And not just from withdrawal. These past 5 years, life has kicked my hindquarters. All things big and small (I used to be proud to be American; now we're a global laughingstock - my opinion), loss-after-loss grief, and mostly, not knowing why my husband was so ill. Mystery illnesses are terrifying. I can't wait to go to sleep each night - it's the only respite I get. And I'm honestly disappointed when I wake up in the morning and have to do this withdrawal all over again. I never think I have it in me to face the day.

 

I didn't expect to crash twice. After such a successful RI (although it took 10-11 months to stabilize), I figured I'd take a nice, easy, no-rush, "operating in the background" taper. Instead, I crashed again after cutting only 6mg. Why? Tapering too soon? Mold? Uneven methods/amounts? 6 glasses of wine in 8 months? All of the above, I guess. I went plenty slow, but I guess there's more to it than that. I wish with everything in me I could go back in time and clock myself in the head for being so arrogant. Look where it got me.

44 minutes ago, ChessieCat said:

Something that I was thinking yesterday was that it would be helpful for you to have a date.  Now please note that the date would not be set in stone, but just a point where you will reassess.

I was thinking this too, but I have mixed feelings. If I go ahead and cut while I'm symptomatic, do I even have a snowball's chance of a relatively comfortable taper? I'm not expecting symptom-free, of course, but the kind of taper RachelSusan did, which, as she described it, had some ups and downs, but for the most part, went on the in background of her life? Conversely, if I continue to hold too long, I am terrified of developing poop out, where I will pretty much suffer all the way down anyway. If my symptoms get too much worse, I will be completely non-functional, and very bad things will start to happen financially if I cannot work at all. Brassmonkey told me he has yet to see someone not stabilize if given enough time. I keep hanging on to that reassurance. I know a couple of other long-holders on here who have benefitted from holding even longer than I have.

 

But on the other hand, I think you're absolutely right; I do feel the need to exert some control. At this point, I'm terrified to to do anything, but I know that, at some point, I have to do something.

 

May I ask you: (1) do you suggest a possible cut in a month because you do not believe I will stabilize any further? Because my windows have been getting better and lasting longer this year; and (2) if the cut causes issues, would I updose, would I have to sit still again and start the waiting-to-stabilize clock all over again, or would I just say damn the torpedoes and keep going, no matter the misery? Not sure I could tolerate Option 3.

58 minutes ago, ChessieCat said:

This might help you to feel like there will be an end because at the moment it probably feels endless.

It does. Thank you so much for your help and understanding. I know this is a lot of hand-holding you're doing here, and I hope you know me well enough to know that I would not bother you unless I was in a real state. I am very grateful indeed.

 

DJV

[ChessieCat]

2 hours ago, Dejavu said:

I was thinking this too, but I have mixed feelings. If I go ahead and cut while I'm symptomatic, do I even have a snowball's chance of a relatively comfortable taper?

 

Did you note the HOWEVER.  The idea is to "play a trick on you mind" to give you some rest from the worry about what to do and when to do it.  If you set a date to re-assess in 1 month you know you have 4 weeks that you don't have to worry about it.

 

What you do after the 1 month will depend on what has happened during that time.

 

Personally I think the majority of your issues are from the mold and hopefully you will start to notice some improvements soon.

 

For example I did a search for:  toxic mold symptoms and recovery

 

What does mold toxicity feel like?

Each person's body is affected by mold toxicity in different ways. Some experience constant migraines and headaches, shortness of breath, brain fog, fatigue or even depression. Since symptoms differ from person to person, they may not be quickly associated with mold exposure.

[Dejavu]

@ChessieCat, I get it now. Sorry to be dense. I will just roll with the rest of this wave, wait for the window, and reassess in a month. Thank you again!

 

Yes, mold toxicity creates a plethora of symptoms, most of which mimic withdrawal. Unfortunately, I've had to become an armchair expert on the topic. I know this is an unusual case, but if you know of any other members with this particular "dual disgnosis" situation, let me know if I can help.

[wantrelief]

Hi @Dejavu - I wanted to let you know that I have been thinking about you and am really hoping you are in a window as I write this.  💖

[RachelSusan]

@Dejavu How are you doing?  I know you had the crash in spring and you were dealing with mold issues. Two giant things.

[Dejavu]

Hello fellow warriors. It's been a while since I posted. I am still at 20mg sertraline. I haven't been able to taper due to the fact that toxic mold was found in our home 2 years ago. It was in the AC ductwork, so everytime the HVAC cycled on, it was blowing toxins all over the house. We had both been feeling very ill for a number of years and couldn't figure out why. The normal mold count in an average home is 300 parts per square foot. Our home measured over 14000! It took half our savings to remediate (insurance does not cover), and after the house was clean, the toxins in our bodies began the die-out process, which takes a very long time and causes a lot of symptoms, many of which mimic AD/WD symptoms. The longer you've been mold exposed, the more toxins are in your body, and the sicker you get during die off. Unfortunately, it looks like we've been exposed for around 10 years, so you can imagine the fun we're having right now. My husband, although much improved, is still not fully functional. I'm a little ahead of him, but not out of the woods yet either. This has no doubt played into the trouble I've had tapering sertraline. My system is already highly sensitized from the mold, so the tiniest cuts have put me into crash mode.

 

Three weeks ago, I'd been feeling pretty stable, so I tried a small cut - 3%. I wobbled a little in weeks 1 and 2, but week three has really hit hard. Last night I updosed by 1.5%, and it appears to be helping. I'm holding here for 3 more days, and will updose the remaining 1.5 if I need to after that. I now know that I am still not ready to taper again, and won't be until I'm completely clear of the mold tox. Lesson learned.

 

What I really wanted to mention, though, is the fact that it definitely takes me 3-5 weeks to feel any reduction I make. I had a blood DNA test performed a few years ago, and it showed I am a slow metaboliser of all SSRIs. I believe this means that any cuts I make 30 days apart or less are piling up in my system, which must be why I crashed doing the slide method. This, plus the mold situation, makes it a foregone conclusion that I need to hold my dose for now. But I wonder about all the other members who are having a tough time with even the smallest cuts. Maybe it's not the size of the cut, but the length of time it takes their bodies and brains to acclimate to it. I'm suggesting that if you are one of those people who struggle with each cut, maybe try slowing down the taper. Instead of every 4 weeks, try waiting 6 or 8. I'm aware this lengthens the total withdrawal time, but as someone who has crashed twice, that's a price I'm willing to pay. 

 

Just a little something to consider for those to whom it might apply. 

[RachelSusan]

@Dejavu Your post means a lot to me.  One of things I tested while I was in withdrawal was for mold in my house. Lucky for me they found nothing. But thank you for posting about it, it may help other people.

 

Secondly, thank you for talking about putting more time between cuts.  I am one of those people, however I don't think I realized it quite so clearly until I read your post. Your post means a lot to me. It is like a hundred light bulbs being turned on at one time. Illuminating. Wow!  Thank you Dejavu.

 

I hope for good healing and cleansing for both you and your husband.  The cost of treating your house must be devastating to you. I hope from here on out things go much better for you.

 

Many many thanks and warm wishes.

Rachel

[Dejavu]

Hi @RachelSusan! I was so thrilled to see you've healed, and also glad you stuck around to mentor people. Your kind encouragement and guidance meant the world to me when I was at my lowest point. You were a real lifeline for me, as I'm sure you are for others.

 

Yes, mold remediation is extremely expensive. It took a giant bite out of our savings and totally derailed our retirement plans. But I'm grateful we were fortunate enough to have the means to do it. There are some people who have to simply walk away from their homes. People often lose jobs, divorce, and are ruined financially by bankruptcies and foreclosures because you cannot live in a moldy house, and you cannot sell it either. So even though we are still pretty darn sick, we count ourselves very lucky. We have each other, and we have our home.

 

It was also quite a relief to finally understand why every single cut I've tried has resulted in a crash. Clearly, my system is still too compromised from mold toxicity for me to do anything with my dose right now. Add my slow metabolizer status to the mix, and it all makes sense. This most recent cut has made it clear that, even though I've sat still on my dose for 3.5 years, I need to wait longer. On an optimistic note, however, it appears that the 1.5% updose will be good enough to bring me right again. So, at least I've managed to cut 1.5% in 3.5 years...lol!! It's okay though - I can wait. I'm functional and the symptoms I do have are, I believe, from the mold tox, not the AD. I'll wait to stabilize, and start my taper when I'm fully detoxed.