The Windows and Waves Pattern of Stabilization

[Kat66]

Hi @Sonia009 and @Onmyway for the quick replies, really helpful thanks.
 

It helps to be reminded that it gets harder the smaller the dose. After 3 years I often reach the point of thinking surely this will get easier soon and then boom another even more intense wave. They’re getting worse if anything. 

 

Sonia thanks for the offer of talking I may take you up on that!

[Sonia009]

18 minutes ago, Kat66 said:

Hi @Sonia009 and @Onmyway for the quick replies, really helpful thanks.
 

It helps to be reminded that it gets harder the smaller the dose. After 3 years I often reach the point of thinking surely this will get easier soon and then boom another even more intense wave. They’re getting worse if anything. 

 

Sonia thanks for the offer of talking I may take you up on that!

@Kat66 Any time, no problem. I know how frustrating and debilitating this is. Take care.😊

 

[SouthernMan]

Hey all, quick question. Is it pretty normal to have new symptoms show up in waves and old ones go away? 

[LostInCanada]

@SouthernMan yes... quite the rollercoaster isn't it. 

[jon1]

5 minutes ago, SouthernMan said:

Hey all, quick question. Is it pretty normal to have new symptoms show up in waves and old ones go away? 

Yes, absolutely normal, I’ve had new symptoms appear two years after my last dose.

[SouthernMan]

Yeah in this wave the mental symptoms aren't as bad, but still there. It started with the ear ringing, head pressure and turned into a vertigo ordeal. Now its just dull headache, twitching all over, tinnitus, and i feel like im constantly on a boat and moving...... 

[2cats2272]

Still struggling almost 17 months off. It’s so frustrating and scary. The anxiety and low mood is scary. 

[6Eggs]

This is my tracking of severity of symptoms, bare in mind that this doesn't tell about the type of symptom as they are constantly changing and new ones come and go all the time, for me mostly physical but also mood dysregulation which most often goes hand in hand with the physical symptoms.

Also, my perception of how I feel is biased in the chart, a "good day" is merely relief from symptom severity and to a normal person might be considered a bad day, and so far I haven't been totally free of symptoms, more like a good day is where I am functional and comfortable enough to do things without much complaint. 

I would reserve the "beaming days" on the chart for when I feel totally normal, which has not happened yet. I was sure my symptoms were going down hill and more unbearable than before, and the graph shows this is the case in the last month with objectively less good days than the past month or so.  Just for context, my awful days I am completely bed ridden, unable to do anything, barely can go to the toilet, won't eat or drink and feel like I should be in hospital with the excruciating pain and other neurological symptoms.

 

 

[Celeste1990]

Does anyone know if it’s normal to not have any windows? I had a very very severe adverse reaction to Lexapro 3 months ago and I keep waiting for “windows” but they never come. It makes me feel like my case is different and I won’t actually recover. My symptoms are severe dizziness and head/eye pressure, muscle twitches and muscle jerks when trying to sleep. I’m suffering so bad. 

[Farm24]

12 hours ago, Celeste1990 said:

Does anyone know if it’s normal to not have any windows? I had a very very severe adverse reaction to Lexapro 3 months ago and I keep waiting for “windows” but they never come. It makes me feel like my case is different and I won’t actually recover. My symptoms are severe dizziness and head/eye pressure, muscle twitches and muscle jerks when trying to sleep. I’m suffering so bad. 

Unfortunately I don't think it is uncommon.  You have the hypnic jerks too?

[Celeste1990]

10 minutes ago, Farm24 said:

You have the hypnic jerks too?

I do and it’s so awful, I’ve been awake since 2am. I’m losing so much hope that I’ll ever get better. I can’t live like this but I have a 2 year old so I can’t die. But sometimes the pain is so bad I think about leaving my child without a mom which I know is so selfish but I just can’t take it. I spend my entire days sobbing. I don’t know what to do

[BaccatePlayer]

12 hours ago, Celeste1990 said:

Does anyone know if it’s normal to not have any windows? I had a very very severe adverse reaction to Lexapro 3 months ago and I keep waiting for “windows” but they never come. It makes me feel like my case is different and I won’t actually recover. My symptoms are severe dizziness and head/eye pressure, muscle twitches and muscle jerks when trying to sleep. I’m suffering so bad. 

 

 

 

[Farm24]

3 hours ago, Celeste1990 said:

I do and it’s so awful, I’ve been awake since 2am. I’m losing so much hope that I’ll ever get better. I can’t live like this but I have a 2 year old so I can’t die. But sometimes the pain is so bad I think about leaving my child without a mom which I know is so selfish but I just can’t take it. I spend my entire days sobbing. I don’t know what to do

My hypnic jerks have gotten a lot better this last month.  

 

I took fish oil and that triggered an entire night of them. Then an iron supplement did the same.  Stay away from supplements for sure. 

[Celeste1990]

2 minutes ago, Farm24 said:

My hypnic jerks have gotten a lot better this last month.  

That is so great to hear, so happy for you! I hope you see more signs of healing and are able to catch up on your sleep. Also wanted to tag @AliBrace, she’s struggling with hypnic jerks too and I’m hoping seeing it get better for someone else helps give her hope too. 

[AliBrace]

@Celeste1990 thank you Celeste for tagging me in this! Gives me hope🤍 

I haven’t found a lot of people on here other then a couple that are also suffering from hypnic jerks reinstating, very very scary but keeps me going knowing I’m not the only one. So sorry @Farm24 that you are also experiencing these, they are quite literally terrible. 

[6Eggs]

On 7/7/2024 at 10:01 AM, Celeste1990 said:

Does anyone know if it’s normal to not have any windows? I had a very very severe adverse reaction to Lexapro 3 months ago and I keep waiting for “windows” but they never come. It makes me feel like my case is different and I won’t actually recover. My symptoms are severe dizziness and head/eye pressure, muscle twitches and muscle jerks when trying to sleep. I’m suffering so bad. 

 

From what I have read and been told on here, the absence of windows/waves and a more progressive linear recovery is far more common with adverse drug reactions as oppose WD syndrome which is more associated with windows and waves.

But it is also important to be aware that the first several months can be so severe that there is no windows or waves at all, but rather progressive worsening before you plateau out and start to slowly trend up and eventually the symptoms start to breakup into tiny glimpses of windows, eventually they become evident as familiar windows and waves.

I had this, my symptoms rapidly got worse for the first 5 months (8 months if you include when I first started to reduce my med) at least I would say before I experienced some breaking up of symptoms and this breaking up into tiny windows was completely abrupt and unexpected. At the time I knew little on what was happening to me and only just figured out the drugs were to blame.

I also just went though a large wave that felt more like the window/waveless nature you describe and the worst one in almost 3 years, I just got a window starting today after probably 3-4 weeks of pure hell 24/7 after having 1-2 day waves at most for the last year.  So you can have have these windowless periods start long after having normal windows and waves long after touching any med.

 

[6Eggs]

53 minutes ago, AliBrace said:

@Celeste1990 thank you Celeste for tagging me in this! Gives me hope🤍 

I haven’t found a lot of people on here other then a couple that are also suffering from hypnic jerks reinstating, very very scary but keeps me going knowing I’m not the only one. So sorry @Farm24 that you are also experiencing these, they are quite literally terrible. 

I think I had something similar, jolts of fear with a shock like sensation and loss of autonomic control of my lungs (central sleep apnea, not obstructive) so I would also stop breathing when I got these jolts.  This was upon reinstatement as well iirc.  This lasted about 3 months before I could get any form of normal sleep.

[Celeste1990]

12 minutes ago, 6Eggs said:

From what I have read and been told on here, the absence of windows/waves and a more progressive linear recovery is far more common with adverse drug reactions as oppose WD syndrome which is more associated with windows and waves

Oh that is so good to hear, thank you so much for sharing that. Lately I’ve been feeling like all the stories healing doesn’t apply to me because I don’t have any windows so you just reignited my hope. 

 

9 minutes ago, 6Eggs said:

I think I had something similar, jolts of fear with a shock like sensation and loss of autonomic control of my lungs (central sleep apnea, not obstructive) so I would also stop breathing when I got these jolts. 

Yes I get that too! It’s often my muscles that will twitch or jerk but sometimes I will stop breathing in my sleep and wake up feeling like I’m suffocating. Which of course sends my adrenaline through the roof and makes it difficult to fall back asleep. I’m glad that went away for you 🙏 

[AliBrace]

@6Eggs oh wow, I haven’t experienced that. Mainly just jerks and surges of adrenaline that keep me from sleeping. I’m glad those eased up for you. Did you take anything to help you sleep or just pushed through on your own? Also, were you still on the medication during this time or did you get off?

[6Eggs]

On 7/8/2024 at 12:07 PM, AliBrace said:

@6Eggs oh wow, I haven’t experienced that. Mainly just jerks and surges of adrenaline that keep me from sleeping. I’m glad those eased up for you. Did you take anything to help you sleep or just pushed through on your own? Also, were you still on the medication during this time or did you get off?

Just pushed through, I tried melatonin but reacted badly to it, that was the end of accepting more meds to deal with the WD symptoms. I had tried earlier on gabapentin for the excruciating nerve like pain, but a single pill of the lowest dose of that sent me to the hospital from panic like symptoms and repository difficult and as a paradoxical reaction it amplified the pain even more.

I still have this pain now almost 3 years on, but to be fair it came back with a vengeance only in the last few months after it being almost a non issue for the last few years. Funny how sometimes waves can bring in the same symptoms that went away long ago.

Last year I was quite bad at the end of my taper as a paradoxical reactions to the dose when taken got worse as I got lower with taper, I tried plain magnesium supplement as recommended on here, it made me have difficultly breathing and tingles and shivers surging down my back and extremely drowsy but it did get me through the few days dotted around my absolute worst at that time. It worked similar to vallium in the calming aspect but the side effects were freaky, that was half dose too.

I don't recommend anything as tempting as it is in my experience.

[missy27]

I think I'm going through the 12 month wave. July of last year was when I went to zero. 1 month later is when I went into a full withdraw, I reinstated for a month and went back off. So I'm assuming this is the 12 month wave? Man it's a doosy, no sleep, horrible cortisol mornings, anxiety, ruminating thoughts loss of appetite. Anyone else get this? Hoping this won't last too much longer, already been 2 weeks

[namastejen]

Hello, It’s been a long time since I’ve been on here. I’ve been reading on the website or a few hours, finding some valuable information, but needing more targeted support. Also at this point, I’m not sure what my signature line looks like.
Anyhow, here’s my current story. After 8 years of taking it, I’ve been off of Remeron/Mirtazapine for a month now. Tapering was slow over 3 years, because of bad experience about 10.5-11 years ago on other Rx, and before 0mg felt fine in terms of sleep. Last dose 1.875mg (1/4 of a 7.5mg tab).
Over the course of a month, my sleep has been horrible but my mood okay thankfully. I can sense some nervous system dysregulaton—heart palpitations at night probably from being so exhausted from not sleeping well consistently, dizzy/balance issues, blurry vision, brain fog, sensitive to people talking to fast or lots of commotion, and tinnitus which I can have anyhow—wonder how much is from 5G/EMF.

Over this last month, I’ve probably had a little over a handful or two of good nights of sleep—which is obviously not good. I’m taking Mg glycinate 450-600mg, Ca Lactate 520mg, Omega 3 fish oil, 0.6-0.9mg melatonin, and tried Valerian or Kava— these last 2 with varying results, wondering why they are not more effective.

Valerian started out promising and seemed to stop working. Too much? Pooped out? Kava was a second choice after Valerian, didn’t seem to work and has done nothing—almost seems to be worse sleep on it. Things are progressively getting worse sleep-wise.
Note: I try to not take high doses of anything because my body is usually sensitive to meds/herbs. 
I'm contemplating going back on Remeron at 1/8 of 7.5mg because I need to sleep in order to function for myself, family, work. Where can I get support for this particular drug?  I cannot seem to find it.

Thank you, be well, and Namaste!

[Swordfish]

On 7/10/2024 at 5:40 PM, missy27 said:

I think I'm going through the 12 month wave. July of last year was when I went to zero. 1 month later is when I went into a full withdraw, I reinstated for a month and went back off. So I'm assuming this is the 12 month wave? Man it's a doosy, no sleep, horrible cortisol mornings, anxiety, ruminating thoughts loss of appetite. Anyone else get this? Hoping this won't last too much longer, already been 2 weeks

I am experiencing something similar. I went to 0 last June, and the end of this June began a major setback for me. I had been having windows, although they were short some of them made me feel basically back to normal. now it's going on 3 weeks of complete fatigue and soreness all over with deep dark holes of anxiety and depression returning. Hopefully it lets up soon for the both of us!

[missy27]

27 minutes ago, Swordfish said:

I am experiencing something similar. I went to 0 last June, and the end of this June began a major setback for me. I had been having windows, although they were short some of them made me feel basically back to normal. now it's going on 3 weeks of complete fatigue and soreness all over with deep dark holes of anxiety and depression returning. Hopefully it lets up soon for the both of us!

Thank you so much for your response. Yes I am experiencing the exact same thing. Ugh I sure hope it ends  soon too. My windows come after 5pm, until then I'm so tired, sore and depressed. 

[Dee12h]

Did anyone get good windows early on after a short acute phase, and then go back to acute for longer? 

[6Eggs]

Yep, sort of.  For me, the acute stage only lasted (with waves/windows I may add) for maybe 6 weeks?  Then I was virtually symptom free for a few months, although this was probably the condition called drug/withdrawal spellbinding, then the WD symptoms hit really hard and all new symptoms at the 2 month point after I was med free and not in any symptom period that I was aware of, again maybe spellbinding effect.

I have had this 3 times, First time trying taper and CT the first med, then again but more mild and drawn out 18 months later after reinstatement and proper taper.  And now a 3rd time with very drawn out delay and long and intense symptoms, 4 months after a successful 20 month taper that was done pretty well from get go.  These delayed worsening is still my current state and started in early March and still going now, very awful!

This acute, relief then delayed WD is very common from all the posts on this thread. For a long time I thought it was the only one, but after being active on this thread for a while now I have learned all the stuff like this is very common and it does get better, this is usually the hardest part of the recovery because it can often be as bad, sometimes worse than the initial WD and is almost always sudden and delayed long after successful tapering off all drugs and is very long winded!

[Swordfish]

On 7/15/2024 at 2:22 PM, missy27 said:

Thank you so much for your response. Yes I am experiencing the exact same thing. Ugh I sure hope it ends  soon too. My windows come after 5pm, until then I'm so tired, sore and depressed. 

How are you doing now? I would say the last couple days have been a significant improvement where I still feel anxious etc but much much more normal than lately. Definitely one of the roughest patches at a little over a year.

[missy27]

1 hour ago, Swordfish said:

How are you doing now? I would say the last couple days have been a significant improvement where I still feel anxious etc but much much more normal than lately. Definitely one of the roughest patches at a little over a year.

Thank you for checking in. So glad to hear your leveling out a little. I would agree, this one is rough. For me, last week I really thought I was starting to come out of it. I had some pretty good days kinda like what your having, still anxious but more normal. Then friday last week I went downhill again with terrible fatigue, depression, forging, anxious. I'm thinking it's because the weather here kicked up to 90 and high humidity. If I go outside and do things, even if it's for a short time I get nauseated and lethargic for the rest of the day. It's a bummer because I love summer. Hoping this passes soon, and I hope you stay on the up side. 

[Swordfish]

4 hours ago, missy27 said:

Thank you for checking in. So glad to hear your leveling out a little. I would agree, this one is rough. For me, last week I really thought I was starting to come out of it. I had some pretty good days kinda like what your having, still anxious but more normal. Then friday last week I went downhill again with terrible fatigue, depression, forging, anxious. I'm thinking it's because the weather here kicked up to 90 and high humidity. If I go outside and do things, even if it's for a short time I get nauseated and lethargic for the rest of the day. It's a bummer because I love summer. Hoping this passes soon, and I hope you stay on the up side. 

Ugh it's so frustrating when things start to look up only to get brought back down again. Unfortunately that feeling is all too familiar throughout withdrawal. I feel that the heat definitely adds to my fatigue too. Best of luck and I hope it passes soon!

[missy27]

28 minutes ago, Swordfish said:

Ugh it's so frustrating when things start to look up only to get brought back down again. Unfortunately that feeling is all too familiar throughout withdrawal. I feel that the heat definitely adds to my fatigue too. Best of luck and I hope it passes soon!

Thank you, I appreciate it.

[Leonardo]

HELP: I have been on medication for a year and a half, I am experiencing waves and windows and my PSSD is no longer there. I'm wondering if I don't suffer from borderline personality disorder since I continue to have recurring episodes of depression (wave and windows since droping trazodone). I was always very sensitive to everything, I always had afraid of being abandoned and I have had some episodes of paranoia when I having extreme anxiety.

I was just diagnosed with  Relationship OCD and  generalized anxiety. Will it be just a wave with neuro-emotions? In this wave I quickly change my mood and my girlfriend went from saint to villain in an instant. I'm worried about being Borderline and never being able to love on terms. I feel a thousand. Last 2 months had a window where I felt normal and happy.

Could it be that by going through medication withdrawal I'm confusing myself with being borderline? I fit the criteria. 

[6Eggs]

Sounds like normal WD symptoms to me, my mental state is also extremely unstable after taking these meds and WD from them, I was never taking them for anything like this, rather a victim of malpractice and medicated inappropriately for a condition that is not only not meant to be medicated, but also on top of that was the misdiagnosis.

I was mentally stable prior to meds, so I know for a fact that what you are experiencing is a result of the med and their WD.

I am 3 years into this ordeal and my mental instability is the worst it's been so far. I had PSSD as well, it mostly has resolved but in the last 6 months it was replaced with severe PGAD which my main symptom is severe genital, feet and mouth pain and sensitivity, PE, hypersexuality and generalized neuropathic type pain.

I regularly have windows and waves too, usually a few days of each, mostly waves since March and not many windows, or at least they are much smaller compared to the waves.

[Leonardo]

I wanted to say that I've been OF medication for a year and a half and not ON.

[6Eggs]

Yep, lots of people including you and me are in the same boat.  I'm 15 months off the first med and 10 months off the 2nd med, been off everything for a while and I feel like many things got far worse, some things did get better and even resolve completely however, but overall, much worse I'd say. And I thought the tapering was awful, this delayed worsening long after successfully quitting is the hardest part by far and I was in the hospital 5 times in the first year of tapering due to how severe the physical symptoms were, but the psychiatric and pain symptoms top all of that experience.

[Celeste1990]

Does it mean anything when symptoms seem to trade off? My two issues are muscle jerking and dizziness and for a while the muscle jerking was better but the dizziness was bad. And now the dizziness is better and the jerking is bad. I feel like I’m stuck in this constant loop of thinking I’m improving because one symptom lightened up and all I have to do is wait for the other to go away. But then right as it does the other symptom comes back. 
 

I had an adverse reaction to Lexapro almost 5 months ago. I keep hoping it’s a sign of healing but I honestly don’t know  

[BaccatePlayer]

1 hour ago, Celeste1990 said:

Does it mean anything when symptoms seem to trade off? My two issues are muscle jerking and dizziness and for a while the muscle jerking was better but the dizziness was bad. And now the dizziness is better and the jerking is bad. I feel like I’m stuck in this constant loop of thinking I’m improving because one symptom lightened up and all I have to do is wait for the other to go away. But then right as it does the other symptom comes back. 
 

I had an adverse reaction to Lexapro almost 5 months ago. I keep hoping it’s a sign of healing but I honestly don’t know  

Completely normal. Any symptom is a sign your system is trying to fix something. Acute phase is typically worst between second and sixth month, but you can't hurry your body. If you need reassurance, always remember symptoms are validated here because of reports. Even if you had a symptom, pattern of waves, specific observation that no one ever had, what would you do? Still trust that it's CNS instability. Maybe what you report now will bring relief to someone in the future who will notice same thing. Healing takes no breaks.