Finnishgirl: Starting tapering in drug-resistant situation?

[Frogie]

@Finnishgirl

 

I forgot to mention I am 1/2 Finnish also. My great grandparents came from Finland and settled in Montana. My great grandfather never spoke english.

[Finnishgirl]

@Frogie Yes let's do that. I will notify you and @Altostrata in a couple of months and let's see how the situation is.

 

Yes I noticed on Greatful's thread that you also are a Finn, wonderful! I will stick to my sisu  (which my son is also called). 💪

[Frogie]

@Finnishgirl

 

Please do keep me posted on how you are doing and we can go from there.

 

In the meantime, meet some members on here that you can talk to. It does help a lot to have connection to members that are in your situation and can help each other.

[Finnishgirl]

14 minutes ago, Frogie said:

@Finnishgirl

 

Please do keep me posted on how you are doing and we can go from there.

 

In the meantime, meet some members on here that you can talk to. It does help a lot to have connection to members that are in your situation and can help each other.

I will do that. Thank you again!!

[Altostrata]

@Frogie I'm not clear about @Finnishgirl's benzo schedule. Has interdose withdrawal, etc., been ruled out?

 

@Finnishgirl variation of your benzo schedule by 2 or 3 hours each day can cause problems.

 

20 hours ago, Finnishgirl said:

@Frogie  @Altostrata

 

I am just a little concerned that if the Ativan masks my WD symptoms (anxiety, insomnia) from the last AD taper, then how will I know I have stabilized enough for another taper of the antidepressant?

...

 

For what reason were you given the benzo? What we're looking to do is get the benzo dosing evened out so it doesn't cause any problems, such as interdose withdrawal. You should feel better -- more stable -- if you are taking the benzo properly. Then, it should help in your tapering the other drugs.

[Finnishgirl]

@Altostrata

Okay so I should try to be consistent with the dosing. I guess then I should take it every 8 hours to keep the intervals between doses the same?

 

The benzo was given for anxiety but I have noticed that it also helps with some other symptoms: energy level, emotional anesthesia and this strange bodily feeling that I have. This is why I expressed my concern that if I start tapering, how will I really know how stable I am "underneath" if the benzo masks these symtoms. Right now I am feeling really crappy despite the benzo. I dont have any motivation or energy to anything and have no appetite. I feel a little bit weak also pshysically and have this strange feeling in my whole body.

 

[Finnishgirl]

@Altostrata

And yes, Ativan definitely helps me sleep. Otherwise I probably would not sleep.

[Altostrata]

14 hours ago, Finnishgirl said:

This is why I expressed my concern that if I start tapering, how will I really know how stable I am "underneath" if the benzo masks these symtoms.

 

The reason you're taking the benzo is to mask the symptoms. The idea is that the benzo, which is a "brake" that slows you down, calms your system enough that you can gradually remove it and recover.

 

It's important that you keep to a consistent drug schedule every day. You may have been causing more symptoms by taking your benzo inconsistently.

[Finnishgirl]

@Altostrata 

 

Okay, I will build a consistent schedule. Best would probably be 8 hours apart so that it is as even as possible. So for instance 7am, 15pm and 23pm.

 

I hesitated to raise my dose back up quickly from the stupid rapid tapering attempt so I am now at 15mg of Trintellix.  I notice that I feel a little worse than on 20mg that was the starting point (for example my appetite is worse and I have less energy). Do you think I should raise the dose back to 20mg? I was just reading about kindling here and hesitated. On the other hand I feel like I want to be at best possible place when I start slowly reducing again. And that I might want to wait for a long time before starting, because there have been so many changes in the last year or so. Maybe I should wait for a year or something...

 

 

[Finnishgirl]

@Altostrata

 

Failed tagging

[Finnishgirl]

And äsch I never forget to take doses but tomorrow morning I just can't remember if I took it or not. Is Is it better to skip a dose or take an extra one?

[Finnishgirl]

I mean Trintellix dose

[wantrelief]

Hello @Finnishgirl:  I wanted to stop by your thread and thank you for your very kind message on mine.  I am so sorry for everything you've been through in the last year or so. You are such a strong person to have come through all of that.  I hope holding helps bring you more stability so you can start your taper from as strong of a position as possible.  I am rooting for you, Finnishgirl. 💖

[Finnishgirl]

@wantrelief

Thank you so much for visiting my thread and your encouraging words. ❤️ It is paradoxical how at the same time you feel so utterly weak but are so extremely strong to go on at the same time. 

 

Yes I hope I will stabilize more during the following months. Somehow I feel, though, that my brain has destabilized so much from the med changes the recent years, that I probably won't stabilize to be in a good position to start my taper. For such a long time I did not realize what was going on and tried to find help from psychiaty. But as said, I find so much hope in your story, as you were able to resume a slow taper from a bad spot ❤️ But let's see where I land. I am planning to hold for about a year any way, since my crash was so bad and there has been some stupid up and down hassle with the dose.

 

By the way, did you have any restlessness in your body when you started to taper? This is one of my symptoms but it is fairly mild. Overall, I have this really strange feeling in my body all the time, hard to describe. Just feels weird.

[wantrelief]

5 hours ago, Finnishgirl said:

By the way, did you have any restlessness in your body when you started to taper? This is one of my symptoms but it is fairly mild. Overall, I have this really strange feeling in my body all the time, hard to describe. Just feels weird.

I do have some restlessness.....I think it is anxiety-related.  I also have a strange feeling physically that is hard to describe.....I just feel generally unwell, like a sick feeling almost.

 

All of this is just so very hard but you are right, somehow we find the strength to go on even if we don't feel like we can.

 

I am thinking of you, 

WR

[Finnishgirl]

8 minutes ago, wantrelief said:

I do have some restlessness.....I think it is anxiety-related.  I also have a strange feeling physically that is hard to describe.....I just feel generally unwell, like a sick feeling almost.

 

All of this is just so very hard but you are right, somehow we find the strength to go on even if we don't feel like we can.

 

I am thinking of you, 

WR

Yes I think this is exactly what I have! Maybe some kind of general malaise would be a best way to describe it? This combined with some slight physical restlessness/agitation. This definitely feels very "unnatural" and is a good sign for one to know this definitely is not "normal" depression or anxiety.

 

What are your symptoms now and what are your best coping mechanisms with them?

[wantrelief]

4 minutes ago, Finnishgirl said:

Maybe some kind of general malaise would be a best way to describe it? This combined with some slight physical restlessness/agitation. This definitely feels very "unnatural" and is a good sign for one to know this definitely is not "normal" depression or anxiety.

Yes what you describe is how I feel too and does feel unnatural to me as well.  I am experiencing a terrible sense of apathy, anhedonia and intrusive thoughts (including terrible SI at times) along with anxiety.  I also wake up in the early morning hours feeling unwell and unable to go back to sleep.  There are other symptoms but those are the most predominant ones.

 

Distraction is very difficult with the apathy and anhedonia.  I think acceptance has been the skill I've tried to develop the most but of course that is challenging at times. 

[Erell]

On 10/26/2022 at 12:34 PM, Finnishgirl said:

And äsch I never forget to take doses but tomorrow morning I just can't remember if I took it or not. Is Is it better to skip a dose or take an extra one?

 

Hello Finnishgirl, 
I'm sorry I can't answer your question, but while reading this, I thought maybe I could share with you my tool to avoid these doubts and the stress that comes with them: I bought myself a calendar and every day, as soon as I swallow my dose, I write it down. That way, if I have any doubts during the day, I just have to look at my calendar and confirm that I've taken it. After a few days, it becomes a reflex to note after taking the drug. If you have trouble remembering to do it, you can buy a small notebook or calendar and store it with your medication so you can see it every time you take your dose. Or write it down on your phone... but I'm a bit old fashioned
Take care ❤️ 

[Altostrata]

Please let us know when you have been on a consistent dosing schedule every day for a week.

[Heath]

On 10/26/2022 at 5:34 AM, Finnishgirl said:

And äsch I never forget to take doses but tomorrow morning I just can't remember if I took it or not. Is Is it better to skip a dose or take an extra one?

another member said they write their dose and date on bathroom mirror with a dry eraser marker 

[Finnishgirl]

@Erell @Heath

 

Thank you for the good tips! I already started to mark the doses on a plain paper with a pen.

Seems to work alright. 

 

And thank you for visiting my thread! I am in a bad spot and all support is more than welcome ❤️

 

I hope I am not doomed forever by the mishaps there have been during the last 3 years

[Finnishgirl]

On 10/30/2022 at 8:45 AM, Altostrata said:

Please let us know when you have been on a consistent dosing schedule every day for a week.

Will do!

[RachelSusan]

29 minutes ago, Finnishgirl said:

I hope I am not doomed forever by the mishaps there have been during the last 3 years

You are not doomed. You have had some medication changes and are now very sensitized, but you are also now more knowledgeable and will follow your plan and will recover. I know we all hate how long we have to wait to see improvement but waiting is the best thing.

[Finnishgirl]

2 hours ago, RachelSusan said:

You are not doomed. You have had some medication changes and are now very sensitized, but you are also now more knowledgeable and will follow your plan and will recover. I know we all hate how long we have to wait to see improvement but waiting is the best thing.

Yes it is very hard to just wait but what can you do! Turtle wins  the race. I just hope I will find some improvement already on the way, since I have been feeling so ill from this iatrogenic mess already for a long time. 

 

And also, I would love to find more people who have started their taper in a pretty bad condition, since I think I will probably be still quite low when I start. In 2019-2021 I did not make any changes and still did not improve. I think my situation is a combination of WD and poop out, since I had the typical symptom pattern when I reduced my dosage this year (symptoms getting better initially at every drop). This is maybe something that also @Altostrata needs to know

[Roserdl]

8 hours ago, Finnishgirl said:

Yes it is very hard to just wait but what can you do! Turtle wins  the race. I just hope I will find some improvement already on the way, since I have been feeling so ill from this iatrogenic mess already for a long time. 

 

And also, I would love to find more people who have started their taper in a pretty bad condition, since I think I will probably be still quite low when I start. In 2019-2021 I did not make any changes and still did not improve. I think my situation is a combination of WD and poop out, since I had the typical symptom pattern when I reduced my dosage this year (symptoms getting better initially at every drop). This is maybe something that also @Altostrata needs to know

 

I just came off tapering from late May to September, I reinstated way too high and I did better with all my drops until I went off which threw me into an agonizing depression.  I did it too fast and don't recommend.  I was just scared my body would reform around the high dose if I kept holding.  I in the first month of the drops it was agony.  I am now off six weeks and most of my symptoms have stayed.  But, yes, if you are having side effects from the drug (and not WD), whichever they are do tend to fade.  My vision, blunting, body sensation improved.  So, you may be surprised at symptom improvement.  But, be careful not to go to fast like I did.  I realized I was kindled and on way too high a dose and early in reinstatement.  I am pretty sure Alto is fully aware of the poop out pattern

 

Good luck, I am in serious trouble at the moment but hanging on.  The depression is starting to lift a bit in evenings, so that is something.

 

 

[Finnishgirl]

12 hours ago, Roserdl said:

 

I just came off tapering from late May to September, I reinstated way too high and I did better with all my drops until I went off which threw me into an agonizing depression.  I did it too fast and don't recommend.  I was just scared my body would reform around the high dose if I kept holding.  I in the first month of the drops it was agony.  I am now off six weeks and most of my symptoms have stayed.  But, yes, if you are having side effects from the drug (and not WD), whichever they are do tend to fade.  My vision, blunting, body sensation improved.  So, you may be surprised at symptom improvement.  But, be careful not to go to fast like I did.  I realized I was kindled and on way too high a dose and early in reinstatement.  I am pretty sure Alto is fully aware of the poop out pattern

 

Good luck, I am in serious trouble at the moment but hanging on.  The depression is starting to lift a bit in evenings, so that is something.

 

 

Thank you for visiting my thread! Yes I think my situation is a combo of the meds "living a life of their own" (as in not doing what they used to do before) and WD. I hope I will get some relief when I go slowly down.

 

I have noticed at times during the last years that if I for example forget a dose, I feel better for a short time. Also, when I crosstapered from escitalopram to Tintellix and was on a low dose of both for a short while, I even felt normal for like a week. So there must be something these drugs have to do with how bad I feel. I just wanted to notify @Altostrata so that she knows about these patterns that I have had. I am aware that she knows about the patterns in general

 

And yeas, I definitely won't go fast, it is not possible for me at all given my history of multple changes and going up and down with the meds. I will probably have to go very very slowly. I am happy that I am at least fairly young (33) so I still have time for drug-free life. Thpugh I am also at the same time afraid of the tapering process, and how I will be able to taper after all this.

 

I will visit your thread Roserdl! ❤️ 

[Finnishgirl]

@Altostrata @Frogie @Shep

 

Benzo tolerance setting in. I have noticed that the benzos don't have the same effect anymore than they used to in the beginning. At first, I could always see a clear easing in my symtoms around 30-60 minutes after taking the benzo. I could always fall asleep as well in that time frame after taking the benzo and mirtazapine. Now I don't see that easing clearly anymore and it takes me over 2 hours to fall asleep after the night meds. Also, I wake up more early from taking the night benzo, often around 4-5am (before my alarm at 5 when I take my second benzo and continue to sleep more). Before, I could often sleep until 7-8 in the morning and take the second benzo then. Also, I wake up being anxious already which was not the case before. These changes have happened gradually over time. I have now taken benzos evened out 8 hours apart at 9pm, 5am and 13pm.

 

I am not sure what to do? Just wait fo the tolerance to set in even more and more up to a point where I start getting paradoxical anxiety from the benzos, when by body craves more? I remember from 2019, that my anxiety did not get worse at all when I tapered off the benzos and actually got better after a while (maybe 1-2 months), compared to when I was on the highest dose (3 mg a day, the dose I have now been on the whole time).

 

What are your suggestions? I really don't feel that I will stabilize well if this tolerance issue keeps getting worse...

[Finnishgirl]

Another possibility is that my rapid taper attemt and dose change (hesitated to go back up so stopped at 15mg) have taken its toll now. 

But somehow I notice patterns related to the benzos. I don't feel like my baseline is significantly changed but the effect that the benzo produces is different. But could be both. 

I just don't think I am one of those people that can successfully be on the same benzo dose for years. That is what I noticed already earlier in 2019.

[Shep]

15 hours ago, Finnishgirl said:

I have a general question about this.  On this site, it is recommended to taper the benzo the latest. But how about tolerance? I remember hearing from Robert Whitaker about a study where people with benzos experienced more anxiety than the controls in only 4 weeks onwards. Is it really the best way to keep being on the benzo for years extra, if it is making you more anxious the whole time? I guess there are people that for some reason don't develop tolerance but I think most do. 

 

1 minute ago, Shep said:

 

The studies on tolerance aren't with people dealing with polypharmacy. For people who are solely on a benzo, then they may wish to taper if and when tolerance sets in (compare this to "poopout" on antidepressants). However, for those on stimulating antidepressants, removing a benzo may be problematic. Even for a drug that's not helping, it still has withdrawal symptoms and tapering off it may unleash the stimulating side effects of the antidepressant. It's hard to tell how much a benzo is suppressing the stimulation from an SSRI. 

 

Many times, when someone is asking this question and is dealing with polypharmacy, it's due to a change in other drugs with the expectation that the benzo will cover the withdrawal from this other drug. In your signature, you have a 50% reduction in Trintellix last month. That may take weeks or even months for your nervous system to recover from. Please don't assume removing a benzo will fix the damage of a rapid antidepressant taper. 

 

@FinnishgirlI've copied and pasted this discussion from a thread in the benzo forum so the moderators working with you don't have to duplicate this work. 

 

Please continue discussing this here in your intro thread so all of your information is in one place. 

 

23 hours ago, Finnishgirl said:

Another possibility is that my rapid taper attemt and dose change (hesitated to go back up so stopped at 15mg) have taken its toll now. 

 

Yes, this is quite possible. I wouldn't make this worse by removing the benzo right now. I would give yourself a few weeks without reducing anything and then reassess. 

[Finnishgirl]

@Shep

Thank you for your answer! Yes I will just wait and see what happens. I am just somehow very worried about the benzo use. How was your experience with them? Did you get worse with long term benzo usage?

[Shep]

4 hours ago, Finnishgirl said:

How was your experience with them? Did you get worse with long term benzo usage?

 

Feel free to check out the success story linked in my signature. At the top of the first post is a link to my benzo forum thread. It's an example of doing everything wrong but still coming out okay in the end (please note I don't recommend cold turkey and rapid taper withdrawal - I didn't know any better at the time). 

 

4 hours ago, Finnishgirl said:

Thank you for your answer! Yes I will just wait and see what happens.

 

Please let us know how you're doing over the next few weeks. 

[Finnishgirl]

Last night worse sleep than ever but still okayish. Took me around 2 hours until I noticed a relaxation from the benzo and was able to fall asleep. Bad anxiety when I woke up at 8.30. Suicidal thoughts all day.

 

Horrible physical feeling before taking benzo for about an hour, I took it 20 minutes late from schedule at 1.20 pm.

[Heath]

@Finnishgirl try and do self help as much as you can, there is a lot on this site about that. No sleep is a biggie in withdrawals.  And early morning cortisol is another big one. 
 

If you have access to smart phone there is a podcast app with calm white noise on it. It’s free on my iPhone. I listen to the rain for 8 hrs to help me sleep. Another thing that helps me is either digital or paper form puzzles like suduko or stories put me to sleep even if it is for a few minutes. Then just pick up and start reading again. Whatever you  can do to help you sleep keep doing it. Audible stories is good too. 
 

There are several tips to help with morning cortisol, one is when you wake up get up. I find if I just lay there and try to sleep in thoughts and anxiety builds. 
 

For day time anxiety keep busy and distraction is one of the best things. Cortisol is high in morning and lowest in late evening. 
 

https://www.survivingantidepressants.org/topic/17471-early-morning-waking-managing-the-morning-cortisol-spike/

 

[Shep]

10 hours ago, Finnishgirl said:

Horrible physical feeling before taking benzo for about an hour, I took it 20 minutes late from schedule at 1.20 pm.

 

Did you feel better after you took the benzo? 

[Finnishgirl]

9 hours ago, Shep said:

 

Did you feel better after you took the benzo? 

Yes. But it takes some time, about 30-45 minutes to notice some improvement. Same thing happened in the evening. Now when I paid attention, I noticed that the feeling started to creep in 2 hours before the benzo.

[Finnishgirl]

15 hours ago, Heath said:

@Finnishgirl try and do self help as much as you can, there is a lot on this site about that. No sleep is a biggie in withdrawals.  And early morning cortisol is another big one. 
 

If you have access to smart phone there is a podcast app with calm white noise on it. It’s free on my iPhone. I listen to the rain for 8 hrs to help me sleep. Another thing that helps me is either digital or paper form puzzles like suduko or stories put me to sleep even if it is for a few minutes. Then just pick up and start reading again. Whatever you  can do to help you sleep keep doing it. Audible stories is good too. 
 

There are several tips to help with morning cortisol, one is when you wake up get up. I find if I just lay there and try to sleep in thoughts and anxiety builds. 
 

For day time anxiety keep busy and distraction is one of the best things. Cortisol is high in morning and lowest in late evening. 
 

https://www.survivingantidepressants.org/topic/17471-early-morning-waking-managing-the-morning-cortisol-spike/

 

Thank you Heath! Yes I try to distract myself but find it sometimes hard when the ruminations and bad feeling are very strong. Meditating sometimes helps to cut the ruminative thoughts. I have to dig deeper to the things that could help sleep. At least last night was better, I was not so anxious in the evening so the night was better. I distracted myself until I felt tired which was good. The night before, I tried to just wait for the sleep to come and that was free space for rumination of course.