rmce72a: Effexor withdrawal with Prozac bridge

[rmce72a]

Hello there and thank you so much for checking in. My stomach issues are no better, but no worse, so that's something positive, I guess. I still eat the same old stuff oatmeal, baked chicken or beef, hard-boiled eggs, and green beans every day, gluten-free rice crackers. I am afraid to try other foods because I am so sensitive that eating the wrong thing send my anxiety through the roof. 

 

I am still Googling for answers and have learned more than I ever wanted to know about the body's nervous systems, serotonin, the gut, immune system, etc.  All these systems are apparently connected, and when one is damaged, all others are affected which explains stomach distress and food sensitivity in WD. I have also read the antidepressants can be a contribute to Gastroparesis. 

 

How are you doing? Thank you so very much for checking in. I am so glad to hear from you. Please feel free to send private message any time. Take care. Rebecca

[Shep]

17 hours ago, rmce72a said:

Thank you so much for the reply. I plan to just hold at 73 and see what happens. I don't know what else to do. The Keto diet is close to my current diet, although many Keto things I cannot tolerate yet. Another SA poster suggested sprouted brown rice that contains Gaba. I may try that unless I hear otherwise.

 

As always, I am so very grateful for all the help. Bless you. xo Rebecca

 

You may want to give the sprouted brown rice a go, starting with a little bit to make sure you don't have any food sensitivities to it. 

[Catina7]

You may also want to look into Resistant Starch.  These are starches that are beneficial for the gut biome and can help to heal any digestive issues.  It's pretty interesting; I just learned about it:

 

https://www.healthline.com/nutrition/resistant-starch-101#types

 

 

[rmce72a]

Thank you Shep and Catina.  Shep, I just re-read your hoping for a little encouragement since I can't seem to stabilize and I don't know what to do. Your journey is inspirational.

 

I am still in a dilemma about tapering. I had decided to hold at 73 (although some dose turn out to be 73.15, 73.10, etc) due to bead count variations. I still have constant symptoms of anxiety, high tinnitus, nervousness, etc even though I am not tapering. I just don't know what to do. It seems that my CNS and other systems are just in a state of chaos. I know my body needs to get rid of this drug, I just don't know how to proceed. 

 

Today, I find myself sinking into depression, which I have not been feeling much. My anxiety, tinnitus, stomach, and nervousness have been my major symptoms. But today, I find myself sinking deep into a feeling of hopelessness and depression, which is scary. My life is slipping away, and I just don't know what to do to get it back. Anything and everything I try doesn't work. I was convinced for a while that the problems that started back in 2019 were due to poop out, but I don't think that's the case. I think the abrupt switch from Effexor to Cymbalta back to Effexor in a year brought it on. If this is Protracted Withdrawal, what do I do?

 

These symptoms have been worse than usual for a few days. I wonder if going back up above 73 to 73.16 and 73.18  has anything to do with it. If so, when can I drop below 73.1 to, say 72.95  or so without making things worse?

 

I was reading about the importance of stabilizing before proceeding with a taper, but how do I do that? The info on stabilization doesn't seem to fit my situation. Is counting beads and taking 73.15 one and and 73.0 the next destabilizing me? I can't avoid that in bead counting. I am losing hope, and being optimistic and distraction aren't working because the physical/emotional symptoms are so intense. Suggestions? Thank you so much. xo Rebecca

[rmce72a]

I really need some guidance about what to do next with my taper. Things are going from bad to worse. Should I stay at 73.17 tonight or drop to 72.94 or so? Without being more specific, feel like I am barely hanging on.

[Vasherr]

If it really is poop out then tapering is the only way according to poop out thread, holding will only makes things worse

[Catina7]

1 hour ago, rmce72a said:

I really need some guidance about what to do next with my taper. Things are going from bad to worse. Should I stay at 73.17 tonight or drop to 72.94 or so? Without being more specific, feel like I am barely hanging on.

Hopefully one of the mods will give you some guidance soon.  I'm SO sorry that you're having such a hard time!  My thoughts are with you. xo

[littlebird]

1 hour ago, rmce72a said:

Without being more specific, feel like I am barely hanging on.

 

I'm so sorry you're feeling this way!! I so know the feeling of barely hanging on through this process. Hope you find a way out soon.

[Shep]

2 hours ago, rmce72a said:

I really need some guidance about what to do next with my taper. Things are going from bad to worse. Should I stay at 73.17 tonight or drop to 72.94 or so? Without being more specific, feel like I am barely hanging on.

 

Hang in there, @rmce72a. I'm going to check with the other mods to see if there may be a way to get your doses more consistent with the bead count. 

[rmce72a]

Thank you all for your kind responses. Shep, I have a follow up question for you and the mods. Since I first found SA, my assumptions about what is wrong and have changed since I have learned more here and looked back over my history. Here is what I now believe has happened to me, and I would like the expert perspective of those of you and other mods as to whether or not you agree. I would also like to know what you think about how I should proceed with my journey to get out of this nightmare. 

 

Back in 2018- following a suspected heart problem that turned out not to be a heart problem, PCP switched me from 20+ years on Effexor 75 XR (which I had been taking for fibromyalgia, not anxiety/depression) to Cymbalta 20mg without any taper or titrating. Cardiologist also added metoprolol 25mg 2/day as a precaution which I took for several months before stopping. I did not know to taper it.

 

2019 -Began having first symptoms of anxiety, crying, depression, food intolerance, etc.

 

Early 2020- Back to PCP who direct switched me back to Effexor 75 XR, again no taper or titrating. CYm stopped one day, Effexor the next.

 

2020- Symptoms continued and others added

 

2021-  Found new PCP and started seeing therapist. Symptoms continued. Stayed on Eff 75 XR and symptoms continued.

 

Mid 2022 - After researching Effexor, found SA and realized the med was the problem. Started slow taper in May from Effexor 75 following bead counting instructions here. Symptoms continuing. Tapered to 72.9-73.

 

Jan 2023 -Tried dropping to 72.5 but symptoms worsened

Upped dose to 73.0-73.15 (vary because of bead counts in each capsule)

 

Feb 2023 - Trying to hold around 73.0 -- 73.15. Symptoms and waves worsening.

 

What I now believe: the switch back and forth from Eff to Cymbalta then back to Effexor with no taper or titrating has thrown me into some kind of kindling/protracted withdrawal. My symptoms are not improving but worsening at the higher dose.

 

My question: How do I proceed? Is this a permanent state for me or is there a way out? If I have been in protracted withdrawal, have I been there for the past 3 years? Why am I having such severe symptoms even though I am still taking Effexor?

 

I hope someone is able to provide some explanation for all of this and how I can help myself.

 

Note: No alcohol, caffeine, sugar, soy, gluten, fresh fruit/vegs, supplements. I have not been sick. I take my meds at the same time every day without fail.

 

Thank you all so much. Please help me. xo Rebecca

[Catina7]

My common sense tells me that if your body is having such a hard time stabilizing that the last thing you'd want to do is try to titrate down anymore.  I would think it would throw your body into even more disarray.  You said that most of your symptoms were gone at the 72.9 mg dose, is that right?  When your symptoms resolved at that particular dose, how long did it last?  It looks like not long after that you titrated down some more the very next week.  I think you started titrating down in the very beginning when you were already having withdrawal symptoms from your med switches.    It looks as though you've been titrating down once a week instead holding each taper until you feel more stabilized.  I think you've been titrating down way, way too fast....too fast for your body to play catchup.  

 

When I was a member of a Facebook Effexor withdrawal group, they said that a small updose to the last dose you felt stable at could help to relieve symptoms.  Please run this by a mod - perhaps Shep - to see if this is something you can do.  

 

I KNOW there is answer out there for you to help you feel more stabilized.  Please DON'T give up.  Maybe with just a little tweaking you can help yourself feel better soon.

 

You have my full support, and I care very much about you.  I hope you get relief soon! 

 

[Catina7]

Please let me know how you're doing today, I've been thinking about you! 

[Shep]

18 hours ago, rmce72a said:

What I now believe: the switch back and forth from Eff to Cymbalta then back to Effexor with no taper or titrating has thrown me into some kind of kindling/protracted withdrawal. My symptoms are not improving but worsening at the higher dose.

 

My question: How do I proceed? Is this a permanent state for me or is there a way out? If I have been in protracted withdrawal, have I been there for the past 3 years? Why am I having such severe symptoms even though I am still taking Effexor?

 

I hope someone is able to provide some explanation for all of this and how I can help myself.

 

Note: No alcohol, caffeine, sugar, soy, gluten, fresh fruit/vegs, supplements. I have not been sick. I take my meds at the same time every day without fail.

 

@rmce72a I think you're right about those abrupt changes possibly kindling your nervous system. And you may also be in a state of poop out. 

 

I also think not being able to eat adequately and possibly not getting enough water and hydration that you would if your appetite were better, along with battle fatigue from being sick for so long. All of this could be at play. Otherwise, your diet looks good and healthy, as you're avoiding all of the known triggers for withdrawal symptoms. 

 

I asked the other staff about the slight variations in bead counting and Alto, the site owner, said she didn't think that's in play here. The sizes aren't that different. 

 

18 hours ago, rmce72a said:

Jan 2023 -Tried dropping to 72.5 but symptoms worsened

Upped dose to 73.0-73.15 (vary because of bead counts in each capsule)

 

Feb 2023 - Trying to hold around 73.0 -- 73.15. Symptoms and waves worsening.

 

Did you see any improvements at all in updosing from to 73 mg? Did your symptoms get worse? 

 

This is where it gets very tricky because if you're dealing solely with poop out, there aren't many options. I think you've already seen this post, but just in case:

 

Tachyphylaxis, Reaching Tolerance or as It's Lovingly Known "Poop-Out"

 

If you do decide to taper out of poop out (tolerance), please make careful notes of where you're at in your symptom pattern now. As Brassmonkey writes in that thread, "Progress can be monitored by comparison with the poop-out baseline." 

 

The only other option is to continue holding, but it looks like you've been in the 72 - 73 mg range since at least last June, per your signature. 

 

 

[rmce72a]

Hello Catina and Shep. I am so comforted to hear from you. Today has been much better than yesterday, although of course I am still having nervousness, high tinnitus, and fatigue, but that is pretty normal now. I am just trying to accept that I am going to feel this way from now on and there is not much I can do about it but accept it.

 

Last night's dose was 73.03, down from 73.17. I think that going up a little made me worse. For now, I will try to stay as close to 73 as possible for a while.

 

Shep, when I first found SA last summer and began reading the information here along with lots of other things from the Web about Effexor, I concluded that I had to be in tolerance since symptoms started while I was still on the full dose of Effexor. BUT, as I began thinking about 2018-2020, I realized that the symptoms did not begin until I had been directly switched from Eff to Cymbalta (as a precaution by my PCP after my heart incident that turned out not to be my heart at all.) THEN I began having symptoms, which would indicate that the direct switch from Eff to Cym with no taper or titrate started the downward spiral of my health. Then when I went back to dr about all the symptoms I was having, he put me BACK on Eff with no titrate or taper from Cym. After that, things just have gotten worse and worse.

 

For that reason, I now think I probably wasn't actually in full tolerance. I think I have an extremely destabilized nervous system that needs to heal. Period. My dilemma is how should I taper with my nervous system in this condition? I have never reached what is described as WD Normal here. I may go 2 days of feeling better, than get hit with a week of miserable, much worse symptoms, like yesterday.

 

I guess for now, I should just hold where I am close to 73mg and see how it goes. In the meantime, I welcome and thoughts or suggestions you may have for me. I do so appreciate your support and concern, Shep and Catina. I don't have many lights in the darkness these days, but you two are definitely 2 lights that are keeping me going. I can't tell you how much I appreciate it. 

 

Catina, I hope you have had a manageable day. SHep, thank you so very much.   xoxo Rebecca

 

 

 

 

[Catina7]

1 minute ago, rmce72a said:

Hello Catina and Shep. I am so comforted to hear from you. Today has been much better than yesterday, although of course I am still having nervousness, high tinnitus, and fatigue, but that is pretty normal now. I am just trying to accept that I am going to feel this way from now on and there is not much I can do about it but accept it.

 

Last night's dose was 73.03, down from 73.17. I think that going up a little made me worse. For now, I will try to stay as close to 73 as possible for a while.

 

Shep, when I first found SA last summer and began reading the information here along with lots of other things from the Web about Effexor, I concluded that I had to be in tolerance since symptoms started while I was still on the full dose of Effexor. BUT, as I began thinking about 2018-2020, I realized that the symptoms did not begin until I had been directly switched from Eff to Cymbalta (as a precaution by my PCP after my heart incident that turned out not to be my heart at all.) THEN I began having symptoms, which would indicate that the direct switch from Eff to Cym with no taper or titrate started the downward spiral of my health. Then when I went back to dr about all the symptoms I was having, he put me BACK on Eff with no titrate or taper from Cym. After that, things just have gotten worse and worse.

 

For that reason, I now think I probably wasn't actually in full tolerance. I think I have an extremely destabilized nervous system that needs to heal. Period. My dilemma is how should I taper with my nervous system in this condition? I have never reached what is described as WD Normal here. I may go 2 days of feeling better, than get hit with a week of miserable, much worse symptoms, like yesterday.

 

I guess for now, I should just hold where I am close to 73mg and see how it goes. In the meantime, I welcome and thoughts or suggestions you may have for me. I do so appreciate your support and concern, Shep and Catina. I don't have many lights in the darkness these days, but you two are definitely 2 lights that are keeping me going. I can't tell you how much I appreciate it. 

 

Catina, I hope you have had a manageable day. SHep, thank you so very much.   xoxo Rebecca

 

 

 

 

I am so relieved to hear from you!  I've been SO concerned about you!  Sometimes just accepting things can do much to actually help us to heal...mentally!  Do you know what I mean?  Instead of constantly fighting with ourselves and worrying about everything and what the future holds, just finding calm acceptance can do so much to help us.  My nervous system is damaged too, and I feel anxiety all. the. time.  It's been a year and a half now and it's been baby steps the whole way.  But I've stopped worrying and just let things be.  I try to find coping skills for my symptoms that calm me.  The calmer we are, the faster we will heal!!!  Try to find peace and calmness and things that make you feel safe, positive, and hopeful.  Keep trying different modalities to help yourself, whatever they may be.  It's a battle that we're fighting and we need to be armed and prepared for war!  We are always here for you no matter what.  I hope you have a calm and restful evening.  BIG HUGS!

[rmce72a]

Thank you, Catina dear. Just to let you know, I have been trying to accept it all and not sink into "my life is over" kinds of feelings, but, as you well know, that's what it feels like many days.

 

I can't figure out why some days are tolerable and some feel like I just can take one more day. It's so difficult never knowing from one day to the next what things will be like. It would be easier, I think, if we could feel a slow improvement from week to week rather than having the roller coaster ride not knowing what to expect. I am a planner and always have been. In the past, even when I caught a bug and was sick for a few days, I could think "Ugh. I'm sick this week. I'll just take care of that when I feel better in a few days. But with a damaged CNS, we have no idea what we will feel like tomorrow or next week or next month. That's one of the hardest things for me. 

 

I have never been a whiner when I was sick. I just dealt with it as part of life knowing I would feel better pretty soon. But this! This is entirely different. The symptoms come from nowhere and just hit unexpectedly and go on and on and one. Oops. There I go venting again. But you know exactly what I'm talking about.

 

Anyway, thank you for the messages. You are a treasure. I hope you are able to find some calm moments this evening and rest well. Take care. xo Rebecca

[rmce72a]

Why do I feel worse after I take my Effexor dose? This has been another bad day, but I find this evening after taking my 73.03 mg Effexor, symptoms are even worse. Overall,, my symptoms are getting worse, not better. I don't know how to stabilize. Holding doesn't seem to help. Was holding for 10 months until I tried to drop to 72.7 early Jan. Still not stabile. 

[Shep]

8 hours ago, rmce72a said:

Why do I feel worse after I take my Effexor dose?

 

If it happens every day, it could be a side effect, which can be made worse by a hypersensitive nervous system. That may be a call to do a very small reduction to test the waters, say maybe a 1% reduction. 

 

What happens after you take Effexor? Which symptoms ramp up? When does that initial ramp up of symptoms die down? 

 

If you're seeing a symptom that may be a side effect, it will have the same pattern every time you take it. 

 

[rmce72a]

My ramped up symptoms, whether from trying a supplement or a new food, are always loud tinnitus, heart palps, extreme anxiety, some dizziness, numbness in hands, overall nervousness. When I tried to drop to 72.7 in Jan, that's what happened to the extreme. May have been a wave, but who knows. What I try to do is avoid ANYTHING that might make things worse. Even thinking about this situation causes me these symptoms, I am so afraid. If I knew for sure that these were WD symptoms or side effects, I could push forward and hang on, but not knowing is the hardest part. I just want to be stable, and I'm afraid of destabilizing more. Thank you for your help. I appreciate it so much. Thoughts?

[Catina7]

41 minutes ago, rmce72a said:

Even thinking about this situation causes me these symptoms, I am so afraid.

I'm so sorry to hear this! 

 

We may not be able to control some of these symptoms, but we can control how we react to them.  Fear and worry can exacerbate whatever symptoms we are already experiencing.  What types of coping skills are you utilizing?

[rmce72a]

Hello Catina. I hope you are having a manageable day. (Notice I didn't say "good" day, because I know that isn't realistic at this point.) I try to cope by keeping myself occupied and deep breathing, but I can never seem to get away from obsessing about my situation and figuring out what to do. My therapist told me yesterday that I am obsessing on this and need to stop that. Okie dokie. But how? I do try to refocus my thinking, but can't seem to think about anything else. How do you cope?

[Catina7]

There are lots of things you can do to help yourself!  I've done acupuncture, EFT, guided meditation, listening to healing music, exercise, bubble baths, stretching, writing down positive affirmations, etc.  And I remind myself that my symptoms are signs of healing, NOT of everlasting torment.

 

You can look through the thread on Self-Care Treatments to find some things that work for you.  I think if you can have a better mindset and tools that you can utilize, it's going to help you tremendously.  YOU'VE GOT THIS!!!

 

https://www.survivingantidepressants.org/forum/8-symptoms-and-self-care/

[rmce72a]

I wish I knew for sure if these are WD symptoms or side effects. I didn't have side effects that I recall when I was on Effexor the first time, but as I was re-instated a year later with a direct switch with no  no taper from my then PCP, I am wondering if I am reacting differently this time. If they are side effects, I can accept that and continue tiny reductions. If it's WD, then I know I should focus on stabilizing before even a small taper. 

 

Thank you for all the suggestions. I will try. I will look for acupuncture in my area too. xo Rebecca

[Catina7]

26 minutes ago, rmce72a said:

I wish I knew for sure if these are WD symptoms or side effects. I didn't have side effects that I recall when I was on Effexor the first time, but as I was re-instated a year later with a direct switch with no  no taper from my then PCP, I am wondering if I am reacting differently this time. If they are side effects, I can accept that and continue tiny reductions. If it's WD, then I know I should focus on stabilizing before even a small taper. 

 

Thank you for all the suggestions. I will try. I will look for acupuncture in my area too. xo Rebecca

Yeah, it's got to be rough not knowing if it's one or the other.  I'm so sorry.  Just make it your mission to find things that help you; make a list if you have to.  If you can find a good acupuncturist, they can really help.  Check your health insurance coverage too.  I have Carefirst Blue Cross and they cover acupuncture, I just have to pay a $40.00 copay.  

[rmce72a]

I just read an entire thread that started back in 2012, I believe, about people who were struggling to stabilize after a long time. Since I have been having symptoms every single day for a long time, I am still unsure what to do.

 

Shep recently said that perhaps I am having side effects rather than WD since I mentioned I felt worse after taking my pill a week ago, so I began paying close attention to how I have been feeling after the daily dose. What I have found is that I don't feel worse every time, which seem to me to point to instability and not side effects...I don't know.  But here is what I still don't understand, and I would really like mentors or mods to weigh in so I know what to do. 

 

SInce I have had WD symptoms since 2020 when I was abruptly switched from Effexor to Cymbalta then back to Effexor with no tapering, am I just unstable? I didn't start the taper from Effexor 75 until May 2022 after I found SA, yet my symptoms have changed much. I have dropped from 75 to 73 in nearly 10 months, but have never had symptoms relief. Yes, some days are better (window) but most are pretty bad with some nearly unbearable. Why and what do I do?

 

It doesn't make sense to me to go back up to 75 mg and start over since I was having symptoms for more than 2 years prior, I just didn't understand what they were. I did try to drop to 72.7 in early Jan, but it was awful, so I went back to 73.05 or so. If stabilization means a period with few or no symptoms, I have not felt that since 2019. What can I do? Thank you so much. Rebecca

 

 

[Catina7]

10 hours ago, rmce72a said:

am I just unstable?

 

Hi Rebecca,  that's what it sounds like to me, considering that you never had side effects before from taking the Effexor.  I think the abrupt switch from Effexor to Cymbalta then back to Effexor threw your body into withdrawal chaos.  Then, when you tried to titrate down it destabilized you even more.  Hopefully the mods will help you figure this out.  Keep doing your research and read as many threads on here as you can.  Knowledge is power!  Keep finding ways to treat your symptoms so you can endure while your body stabilizes.  

 

Just know that you are not alone... 💜

[Shep]

15 hours ago, rmce72a said:

Shep recently said that perhaps I am having side effects rather than WD since I mentioned I felt worse after taking my pill a week ago, so I began paying close attention to how I have been feeling after the daily dose. What I have found is that I don't feel worse every time, which seem to me to point to instability and not side effects...I don't know.  But here is what I still don't understand, and I would really like mentors or mods to weigh in so I know what to do. 

 

You may want to re-read your thread, rmce. That can be very helpful, as it allows you to see where you were at over the past year and a half since you joined the forum. If you feel that OVERALL, you are doing a bit better, you may want to do a test taper of 1%. 

 

We don't have a magical formula for this. We can only give you the harm-reduction options. Unfortunately, with battle fatigue, side effects, and withdrawal effects all playing a role (and very difficult to tell which is which), there really is not perfect formula. 

 

You may be in between a rock and a hard place where you simply have to soldier on with a slow taper until you are completely off before you see the benefits. This happens with "poop out." 

 

I wish we had better advice for folks who are in your position. If you do restart your taper, do as much self care as you can, especially in staying well hydrated and eating as healthy as possible to keep up your strength. 

[rmce72a]

Thank you so much, Shep. At one point, I did think I was dealing with poop-out, but I no longer think that. I have read everything posted here about WD, WD normal, poop-out, stabilization, coping skills, diet, etc., and have followed everyone's advice to the letter. 

 

A couple weeks ago when looking over my signature, I realized that I had not experienced any symptoms of poop-out. It was only in the months following the abrupt switch by my dr from Effexor to Cymbalta with no taper that symptoms began. His solution was to switch me BACK to Effexor with no taper which only resulted in the continuing (some worsening) symptoms over the past 4 years.

 

My CNS is unstable. If I proceed with a tiny taper, will this only de-stabilize it more? If I continue to hold taper, will I even stabilize? I understand that all this is trial and error, but I am trying to help my CNS as much as I can while also trying not to increase symptoms ever more. On days like today, I'm not sure how much more intensity in symptoms I can take.  Thank you so much.  PS If you were in my shoes, what would you do?

[FindRest]

I’m sorry you continue to go through all of this, rmce. I remember similar fears when I was going through the worst of it. During that time, it was very scary deciding what my next step should be, would it make things better, would it make things worse, can I make it through this, and all of those types of fears running through my brain. I can relate to your situation.

 

At some point, I realized I just needed to make a decision, knowing that if it didn’t help things that I could always return back to the previous step I was on. That’s why it’s important to take little steps as undoing a step forward is much easier when the step is small. I guess what I am saying is try your hardest to let go of the “what ifs” and move forward, whether that be 1) a 1% reduction like Shep mentioned, or 2) staying where you are and waiting for your CNS to stabilize, knowing it can take a long time. Celebrate your decision … let go of the “Did I make the right one?”

 

I know this is a tough decision. I think that no matter which way you decide, good will come out of it. Both have their advantages. Both are guaranteed to give you more information regarding future tapers. 
 

The hardest part in the beginning, IMO, was worrying myself sick that I was about to make the biggest mistake with my next decision. In MANY ways, that in and of itself is a withdrawal symptom! We excessively worry and automatically go to the worst extremes in our thinking because 1) we have been traumatized by WD and 2) WD itself and how it’s chemically messing with our emotions/fears/etc. The reality is that either decision is OK. You’ve sought out good advice, you’re not making impulsive decisions, and you’ve gotten checked out by your dr regarding other potential causes. You’ve done the right steps. Whatever you choose to do next is going to be OK. 
 

This is hard. I give you kudos for sticking with it and persevering. ❤️

[rmce72a]

Thank you, FindRest. I am so grateful for your thoughts and reassurance. I see from your history that your long journey has had many twists and turns, yet you are still pushing forward and have the strength to be here for all of us who are suffering so much. Saying thank you doesn't seem adequate, but I do thank you and admire you so much. 

 

When you were switching drugs and going through CT, I assume you had an unstable CNS too. Did you reduce even when you were unstable? Today my symptoms have been very strong and miserable, although 2 days ago they were not. I am assuming that is the waves and windows pattern. The main question I struggle with is how am I have waves and windows when I haven't changed anything. I am eating the same food every single day, my sleep pattern has not changed, and I have not reduced dosage in a long time. So why windows and waves? Shouldn't stability have happened after 10 months after a taper from 75 to 73? I was also in this symptoms pattern since later 2019 even though I hadn't started taper until May, 2022.

 

If I thought that holding would help, that is exactly what I want to do and would be a peace with it. But I can't stabilize. That is the problem. Were you ever stabile? 

 

Again, thank you for all your help and advice. What you say makes sense, and I am just going to have to make a choice and deal with it. If you have the time, I would like to hear a little about your experiences with stabilizing. Take care. xo Rebecca

[FindRest]

My experience with a destabilized CNS is that it takes a long time to stabilize. It’s still a bit unstable 4 years after it became destabilized (by my dr adding Latuda in 2019). It’s much better now than 2019, and each year my CNS gets better and better.

 

In the beginning it was terrible. The physical and mental symptoms almost took my life, as I didn’t know how I could make it one more day. This part of it went on for over a year. Some days I was desperate for relief. The physical symptoms were awful, but the anxiety, fear, and hopelessness were almost too much to bare. I think what helped me overcome the anxiety part began the day Alto helped me decide to reinstate Effexor. The anxiety was terrible afterwards too, but I had the support here and knew that if worse things happened as a result of my decision, that SA would help me get through. Don’t get me wrong, it was very scary. But, taking the power back into my hands and giving myself the OK to make a mistake was a turning point.

 

I reinstated in Feb of 2020, but my CNS became destabilized back in Feb 2019, with a CT off Effexor coming in July 2019, while I was already destabilized. Things got dramatically worse after that. They (former dr) frantically tried me on one AD after another trying to stabilize me, only making things worse. When I reinstated Effexor in 2020, I was a mess. My CNS couldn’t handle any supplements or even Tylenol, or even some foods, all things I had no problems with before. I had panic attacks, vision problems, body muscle pains, tinnitus to an extreme, etc., all on top of the other symptoms from a year prior. My neck and head jerked at odd times, my arms had involuntary movements, and my legs shook rapidly.

 

After reinstatement (done gradually, bead by bead to only 22 beads), it took 6 months for my symptoms to get to a “tolerable” level. I thought, “If this is the worst it gets from here on out, I can deal with it.” So, I dropped one bead. I got better for a couple of days, but things got worse after that. I decided to hold another 3-4 months before trying another 1-bead drop. During that time I always had WD symptoms … and still do to this day 4 years later … but, I listened to my body after a drop, and asked that same question, “If this is the worst it gets, can I live with it?” If the answer was yes, I’d drop a bead. If “no”, then I’d hold. I repeated this process, only tapering after I was stable for several weeks without any increase in symptoms from my baseline misery. As you can see, I have spent a lot more time holding than tapering, often needing to wait 3-4-6 months between tapers. Over three years and I’ve only dropped 10 beads (I am at 12 beads now and need to update my signature).

 

Sorry about the rambling, but to answer your question about tapering while unstable: “stable” for you and me is different than those whose cns is not compromised. We will have symptoms every single day, some days much worse than others. If we waited for all symptoms to die down or go away, we’d never get off this stuff. I tapered only when my symptoms had been “tolerable” for several weeks, and ONLY if I had not experienced a terrible increase (big wave) in the past several weeks. I also never tapered when dealing with a health crisis: COVID, mini-stroke, jaw injury, surgery, etc.

 

For 4 years, EVERY DAY, I’ve kept a detailed list of my symptoms, rating each one from 1-10. It was an easy visual aid to see if I was ready for a taper. It’s so easy to forget what we’ve been through the past few weeks, and my memory isn’t as good as pre-CT, so lists help me. The lists also help me when I’m down and hopeless and need a reminder of having made it through this thick patch before. the lists also help me determine if something is causing my symptoms. If I take a tylenol, supplement, or have a family stressor or dr’s appt, I add it to the list. It’s amazing how much life adds to our misery. Even eating Campbell’s soup revs me up badly because of the MSG in it (my MIL uses Cream of Mushroom in many things).  I would never have known that had it not been for the info on SA and playing private detective.

Regarding waves and windows … I’m sure you’ve seen the link here … if not, let me know and I’ll find it for you, they are very normal and are part of the healing process. I look at them as evidence of healing. Doesn’t usually mean you’re doing anything wrong. It’s most often because your brain is trying to come back to homeostasis, and trying to figure things out. Everything comes into play: your environment, what you consume, what you don’t consume, stress, sleep, etc..

 

Once you gain some confidence, you too will be able to instinctively know if it’s time to taper again. The trouble right now is that you haven’t been able to reach that “withdrawal normal” place on a consistent basis. I don’t think your symptoms will go completely away until you’re off for awhile. But, they do become tolerable … and they DO get a ton better as time goes on.

 

I don’t know which way I would go if I were you. There are positives to both options. 

 

You and I both are to the age where we need to focus on our quality of life. That pretty much sucks right now for you, and I have plenty of days like that too. Having some windows is a GREAT sign! You may want to keep track of your symptoms and whether a day is a wave or window or a mix of both. Then you can look back and hopefully see that things are improving, little by little. 
 

I better stop writing my book now. I hope something I wrote may be of some help to you.

Hugs. ❤️

Edited March 6, 2023 by FindRest

[rmce72a]

Your response is so informative and exactly the info I need now as I decide where to do from here. Right now, I am having everything you described in your "In the beginning" description. Symptoms are terrible right now and have been for nearly four years. When you said "My CNS couldn’t handle any supplements or even Tylenol, or even some foods, all things I had no problems with before. I had panic attacks, vision problems, body muscle pains, tinnitus to an extreme..." you are describing exactly what I am going through now. 

 

When you say " I dropped one bead. I got better for a couple of days, but things got worse after that..."  Did they resolve and return to your normal level of misery with holding? 

 

You have given me a great deal to think about because I must do something. I cannot continue to live like this with no hope of recovery. Although I welcome and appreciate all the info on SA, your information has been particularly helpful because it addresses so many of my specific problems, and for that I am so very grateful. 

 

Is it possible that I can contact you directly as I continue since I believe that you fully understand what I am dealing with? I know you are so busy helping so many, but I think being able to keep in touch with you as I continue this journey which is so similar to yours will help me a lot. Can I do that through a private message of "tagging" whatever that is?

 

I will study this message again tomorrow and try to decide what to do. I need to count beads Tuesday, so I want to make a decision tomorrow. I don't want to be a nuisance, but I think our similar situations give you insights into what I am going through that could help me so much. I really am so afraid.

 

Thank you again. Your help means more than you know.  Rebecca

[FindRest]

37 minutes ago, rmce72a said:

When you say " I dropped one bead. I got better for a couple of days, but things got worse after that..."  Did they resolve and return to your normal level of misery with holding? 

Yes, every time. I never updosed. I just waited for things to get better. They did 100% of the time. Some times it took longer than others, but the increased symptoms always resolved themselves.

 

37 minutes ago, rmce72a said:

Is it possible that I can contact you directly as I continue since I believe that you fully understand what I am dealing with? I know you are so busy helping so many, but I think being able to keep in touch with you as I continue this journey which is so similar to yours will help me a lot. Can I do that through a private message of "tagging" whatever that is?

SA likes to keep things in the threads because it allows many other people who are going through similar things to learn from each other. You can tag me here by typing the @ sign immediately followed by my name. This will notify me that you have a question. When you start typing my name after the @ sign, a list will pop up for you to choose from.  For example, @rmce72a sends you a notification.

 

I have no doubt that you can do this. It’s just scary and hard and downright awful until you gain some confidence. You seem like you have a strong determination and are intelligent and have a willingness to work. Those traits will help you get through this. 

 

Edited March 6, 2023 by FindRest

[FindRest]

To track my symptoms and rate them, I use the link titled “PDF Monthly List BLANK to Print” in the first post of the following link. I like the blank spreadsheet (instead of the one w all symptoms already listed) where I can put down my symptoms. At the top of each day I put any change in dose, plus if I take any other drug or supplement. After rating each symptom, I add them up and put the total at the bottom of each day. I’ll also note on any day that I may have a cold, dr’s appt, family drama, etc. I save all sheets to compare when needed.

 

 

[rmce72a]

Hello FindRest. Today I read the four pages of your original posts that I could find. I don't know how to read the rest of your story. Anyway, so much of what you describe with your doctor experiences, symptoms, personal life, etc. are very much the same as in my experience.

 

Just as an update, I have decided to hold at 73 for at least a couple of weeks. I hope I don't have to hold for long, but I am just a little more comfortable with this with my CNS  is in such chaos and increasing waves. The other thing I wanted to mention has to do with food additives. I have always reacted badly to MSG, and I was recently doing some reading about that. It seems that MSG (and a lot of other things) excite the glutamate receptors in the brain which anxiety-riddled people don't need! So, I Googled high glutamate foods and found lists of such food that fall in that category. Prepared soups are high on the list which would explain your experience with reaction to canned soups.

 

Anyway, I thought this might be useful to you. FYI today is better than yesterday, although I am still feeling very anxious, a bit dizzy, and generally ill. But, the good news is that I feel that I have some idea about what to do and what lies ahead. Thank you again and do take care. xo Rebecca

[FindRest]

9 minutes ago, rmce72a said:

Just as an update, I have decided to hold at 73 for at least a couple of weeks.

That’s great that you’ve made a decision to wait for at least 2 weeks to taper. Hopefully, your mind can relax a bit now that it no longer needs to worry about what to do for the next 2 weeks. Maybe look at it like a 2-week vacation!

 

Thank you for the MSG info. I knew some of that but not all. It’s crazy how many foods have msg in them.

 

Good luck in the next 2 weeks. ❤️