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Dejavu

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

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Dejavu

Thank you @Altostrata. I'm already using gel drops, liquid tears, a heat mask, and eyelid cleanser. My check up last Wednesday showed tremendous improvement. So I think I'm just going to be done with the steroid. I will call my doc tomorrow. Thank you very much for your help, as always.

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Altostrata

I'm happy to hear your eyes are doing so well. I think you will see your symptoms settle down.

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Dejavu

@Altostrata or any other mod - please help!! I can't recall feeling this poorly - even before I reinstated. PGAD so severe I couldn't sleep - the full bladder sensation woke me every time I tried to doze off. Now accompanied by muscle twitches and spasms, which I haven't had in 3 months. I took 25 mg hydroxyzine to try to sleep - no help. 

 

I've been taking a steroid eye drop for a corneal condition for 12 days. Yesterday morning was my last dose, and because I suspected it was responsible for the onset of this wave, I stopped taking it. Also 5 days ago I tried a small updose of 2.5% liquid zoloft. I RI'd at 25 mg 4 months ago after 1 month off of 50mg and I'm still trying to stabilize. Since then I've only had one decent wave that lasted a couple of days. 

 

My questions are:

 

1. the half life of the steroid was only 3-4 hours. That means I would have eliminated it a day, give or take. It has now been a day, and symptoms are strong as ever. If the steroid is indeed the culprit in ramping up symptoms, does elimination time really matter or do I just have to wait for my CNS to settle?

 

2. If the updose is actually responsible, should I go back down to 26.25 mg? That's the dose where I had my short window.

 

Timeline:

Jan 12 - had slight PGAD for a few hours - was on 25 mg at the time. PGAD never returned til now.

Feb. 24 - on 26.25 mg. Had 2 day window where sx improved but did not go away

Feb 28 - started steroid eye drop.

March 2 - huge uptick in symptoms (anxiety, body aches dizziness, etc) but no PGAD yet

March 6 - updosed to 26.88 mg liquid zoloft

March 9 - PGAD started and has gotten progressively worse

March 12 - morning - took last dose of steroid

                     evening - PGAD and muscle twitches causing total insomnia

 

Any educated guesses as to what I should do now? I know I shouldn't have updosed while on the steroid, but I honestly did not connect the dots that the steroid might have been causing the wave. I was just trying to stabilize. I'm in a great deal of misery right now. Any thoughts would help. Thanks!!

 

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Altostrata

Drug washout takes 4-6 half-lives; some sources say 10 half-lives. As you know, your wave could be caused either by the increase in Zoloft or the steroid taken over a couple of weeks.

 

As you've observed, the timing suggests the PGAD might be from the Zoloft increase, as it takes about 4 days for a dosage change to fully register.

 

So, your choice: Wait to see if the symptoms subside when the steroid clears, or decrease Zoloft again. Please continue to take daily notes.

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Dejavu

Thank you very much @Altostrata. I'm thinking of waiting another day. If no improvement, then I'll be going back down to 26.25. Loaded question I know, but how likely am I to get withdrawal symptoms after one week on 26.88?

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Altostrata

Not likely you'd get withdrawal symptoms.

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Tom37

Hope your starting to feel a bit better. Just remember the waves always do end. Wish I could believe that myself when in them as I never think they will. 

 

 

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Dejavu

@Tom37, thanks for checking up on me. And thanks for the reminder. I think the PGAD has calmed a little. It is the most unpleasant sensation ever! Still feeling chemically nervous and agitated, and painfully sore leg muscles, but perhaps relief is coming on those fronts as well.

 

I called my eye doctor and told her I wasn't going to take her steroid anymore. She said she rx'd that particular one because it's "less likely than others to cause agitation." Funny, I don't recall any mention of agitation as a side effect by either her or the pharmacist. And all the side effects I found listed online have to do only with occular effects, which I find extremely disingenuous. Just another example of uninformed consent being perpetrated by the medical community.

 

I also abandoned the updose from 4 days ago. I don't know whether this wave was caused by the steroid, the updose, both or neither. But I'm going to park myself on this dose for the foreseeable future. The two previous updoses did help me, but this one seems to have been a bridge too far. 

 

You're right about feeling the waves will never end when you're in them. Especially when the journey has been more wave than window so far. I'm so tired.

 

Are you doing all right?

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FarmGirlWorks

(((((( Dejavu ))))))

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Tom37

Good call on staying at the one dose. Seems to be the only way to stabilise. I’m doing ok although back in a wave which started late yesterday. The sense of fear about random things or people is the hardest to deal with. I guess means there is still plenty to fix upstairs for me. 

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Dejavu

I know, right? The other day I walked into our great room and my husband was watching a hockey game. For some reason, I felt this surge of panic - about a hockey game! I still can't make sense of it. 

 

Hang in there!

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Dejavu

12 days into this wave. Dizziness better, but PGAD is miserable. Anxiety is heightened mostly because of the PGAD. This is the symptom I feared the most. And here it is. Withdrawal takes what you fear the most, covers it in sh$%, magnifies it 50 times and shoves it down your throat. 

 

Its been 4 months since I reinstated - when do I decide the reinstatement did not work, say "damn the torpedoes," and just start to taper? Has anyone ever felt better rather than worse after after tapering while not stable? I've screwed this up so bad - coming off sertraline in a month, staying off for a month before w/d hit, then a week on Lexapro, then RI sertraline, then updose sertraline, then back down, then 2 more updoses, then a steroid rx, then a reduction - is it any wonder stability eludes me? Am I beyond hope?

 

I am only able to do the bare minimum at work. I am so afraid of losing my business, my house, my very patient husband who promises me daily we're going to get through this together, my family, and my friends. My passion is music - or should I say it "was" music. I am in 2 bands, but for the past few months I haven't been able to perform or even show up for rehearsals. I'm holding my bandmates back, and they can't wait forever, so I will probably lose music, too. I miss my Mom so desperately - she died last June, and my sister died the December before. I feel alone, abandoned and very sick. I try so very hard to stay positive, but sometimes I wonder, what's the point if things never get better?

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Tom37

You have hope and you have not stuffed up. Yes all those things may not have been ideal but give your nervous system time at the one dose and I’m sure you will get there. It’s not uncommon for it to take 18 months to 2 years to stabilise after an ri or even an updose. 

 

If you go off now you risk getting a lot worse as your so sensitised at the moment, but the mods can advise better on this.

 

I can’t I imagine our pgad feels but I know your suffering. but remember it’s a wave and you need to go through the waves to get to the windows and then to stability.

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puthappinessfirst

Sending you lots of love!

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RusTW

Be strong -day to day.You will get better.

 

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RusTW
2 hours ago, Dejavu said:

12 days into this wave. Dizziness better, but PGAD is miserable. Anxiety is heightened mostly because of the PGAD. This is the symptom I feared the most. And here it is. Withdrawal takes what you fear the most, covers it in sh$%, magnifies it 50 times and shoves it down your throat. 

 

Its been 4 months since I reinstated - when do I decide the reinstatement did not work, say "damn the torpedoes," and just start to taper? Has anyone ever felt better rather than worse after after tapering while not stable? I've screwed this up so bad - coming off sertraline in a month, staying off for a month before w/d hit, then a week on Lexapro, then RI sertraline, then updose sertraline, then back down, then 2 more updoses, then a steroid rx, then a reduction - is it any wonder stability eludes me? Am I beyond hope?

 

I am only able to do the bare minimum at work. I am so afraid of losing my business, my house, my very patient husband who promises me daily we're going to get through this together, my family, and my friends. My passion is music - or should I say it "was" music. I am in 2 bands, but for the past few months I haven't been able to perform or even show up for rehearsals. I'm holding my bandmates back, and they can't wait forever, so I will probably lose music, too. I miss my Mom so desperately - she died last June, and my sister died the December before. I feel alone, abandoned and very sick. I try so very hard to stay positive, but sometimes I wonder, what's the point if things never get better?

I'm sorry you lost your mom and sister. 

Hugs to you

Russ

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Dejavu

@Tom37, thank you again for the reminder and the talk off the ledge. I am just so tired. As we all are.

 

@puthappinessfirst, thank you also. We need all the support we can get right now. Love to you too!

 

@RusTW, thank you! My mom and sister were my two best friends, and I feel lost. I honestly don't know what life will be like without them, and now I may never know because of this sh<&%y withdrawal.

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puthappinessfirst
3 hours ago, Dejavu said:

Its been 4 months since I reinstated - when do I decide the reinstatement did not work, say "damn the torpedoes," and just start to taper?

 

That's the $1,000,000 question I have as well.

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Carmie

Hi Dejavu, 

I can see you’ve really been struggling, I’m really sorry.  As Tom said it can take up to two years for a reinstatement to work. It would be nice to know in advance if a reinstatement will work or not. 

 

I’m really sorry too that you are going through such heartbreak with losing your mum and sister, I’m sending you lots of hugs🤗🤗🤗

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puthappinessfirst
10 hours ago, Carmie said:

it can take up to two years for a reinstatement to work.

 

Well that's grim 😔

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Dejavu

I agree. It is grim. I'm totally triggered. I won't make it two years with these symptoms. I'm 58 years old. By the time I stabilize and complete a taper I'll be well into my 60s. I might as well just stay on this rat poison forever. I suffer every day and my husband suffers with me. I miss my Mom. Maybe I'm done...

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puthappinessfirst

I can't imagine not having my mom around. I am so sorry, @Dejavu

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Tom37

When not feeling good or in a wave it’s hard to envision how you will feel in two months let alone at 2 years. If it takes 2 years then that’s what it takes but it typically gets better the longer you go. You should see you waves get less intense and shorter and windows longer and clearer. If you don’t really get waves/windows then you should see a gradual lessening of symptoms. So while it’s bad now it’s not always going to be like that. 

 

Dont worry about those thoughts as I get them too. I’m only 37 and feel like I may have to suffer like this for the rest of my life yet logically it’s a temporary period in our lives that while may be extremely difficult and challenging, it does end. Of course you hear of the odd person who still has symptoms for years after but they are the very very rare exception and generally much much improved plus we don’t always know there true drug history plus their medical history.

 

58 means you still have plenty of good years left. So you may miss a couple dealing with this but you could then go on be 80 plus!....another twenty years to enjoy life in ways you never thought possible after going through this.

 

I now need to go listen to my own advice as I’m struggling too...thinking this it for me and I’m done.🤦‍♂️ So hard to think you will have better days again even though I have had them.

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Dejavu

OMG, thank you so much @Tom37! I'm in a dark dark hole today. Not much relief in 4.5 months. So tired of the stress I'm putting my family through. I'm exhausted - I feel like I've got nothing left to throw at this.

 

You are such a good person to prop me up in the face of your own difficulties. Sending healing light your way today!

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Tom37

No worries...it helps to help other people.

 

Just one minute at a time if need be. Anyone who keeps going through this is strong beyond belief and we always tend to underestimate what we can handle. You have coped for 4 and half months so why can’t you for another 4 and a half months? Just imagine how much better you could be by then. Just grab on to ‘hope’ and along with self care that will carry you through. 

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Carmie

Hi Dejavu, 

 

I’m really sorry you’re struggling and are feeling sad. It may not take two years to stabilise. Withdrawals aren’t linear, you may end up stabilising in the near future. Don’t give up hope. At the end of last year it took me three months to stabilise after I made a formula change, but I did stabilise. When you are in the midst of a wave it feels like it’s never going to end, but mine have always ended no matter how bad or how long they’ve been. 

 

You’re not old. I’m in my 50’s too. 😄 I’ve got many, many more years of tapering myself to go as I can only taper by small percentages. I’ve been so sensitised by going on and off meds. It is a horrible thought thinking how long this process is going to take, but we will eventually get there. 

 

Take care, sending hugs🤗

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Dejavu

Thank you so much @Carmie! My symptoms of dizziness and PGAD are just so debilitating, that the thought of them being around for 2 years fills me with dread.

 

Its been a tough day. PGAD symptoms woke me in the middle of the night last night. Just about the only thing I had going for me was the ability to sleep. Now it seems that's going to be taken from me too. PGAD is a new symptom - about 5 days old so far, and by far the most unpleasant of my symptoms. I feel as though I've got a UTI and I'm constantly having to use the bathroom.

 

The fact that I can't seem to snap out of deep grief certainly doesn't help. You are always so cheerful and upbeat. How do you do that? I'd love to hear some of your tricks for staying positive. I'm in counseling to work on that. I really like my therapist, but withdrawal is certainly hampering my progress. The good news is he is anti drug, he believes me and has agreed to check out this forum. 

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Vonnegutjunky

Hi Dejavue, I read your entire thread. 

Our stories are extremely similar even down to the metabolic issues. I am an ultra rapid metabolizer at the cyp219 cytochrome, this means when I metabolize, once my med is activated (Paxil) it doesn’t clear quickly, so it builds up. 

 

I was on Paxil for 8 years, it was my miracle drug. It also started giving me liver issues and metabolic issues. Increased cholesterol, and other bad stuff even though I was active and healthy weight. 

 

So I tried to come off it, I got to a really low dose for about 6months, then withdrawal hit. Man, I wasn’t in shock of how messed up I got.

 

So I went back and reinstated, but like you (what your currently going through) I wasn’t feeling better, so I thought my despression was back and I needed more .....so I increased again, doubled my dose. It was horror. This most insane horror you could imagine. 

 

I waited and and tried to stabilize at that higher dose for 5months. I just couldn’t stand feeling so strange and I knew it wasn’t right. 

 

I started tapering and with each taper taper I felt better and better, especially right after my cuts....but that was only becuse I was on DOUBLE my normal dose. 

 

I tried to stablize at my normal 10mg, I tried for a year, but I never did....so I kept reducing, recently having almost a whole month of Perfect days (this was in December) once I had a wave in December I tried to come down even further but a horrific wave hit January 1st of this year, so I had to updose again....that was 6 weeks ago. 

 

Before all of this happened to me I had no idea how long a reinstatement could take.

My genetic tests also showed I cannot take any SSRIs....

 

so so I wanted you to know your not alone, our stories I think are more rare than others , and in my gut I feel it’s a metabolic issue,  or that anything can be done about it.....but your not alone. 

 

❤️🙏❤️

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Dejavu

Hey @Vonnegutjunky, thanks for stopping by. Do I understand that generally speaking, you improve as you reduce? How are your symptoms now? Are you basically functional?

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Vonnegutjunky

 My symptoms got better becuse I reducing after having an acute adverse reaction to double my normal dose....once I got down below my normal dose, the adverse reaction left and now I am in a withdrawal that has left me non functional....I am not doing well, at all, but my adverse reaction is gone. 

 

I could distingush the adverse reaction from the withdrawals....for a while I had both....

 

when I first got bad I couldn’t leave my bed....at all.....I’m a professor, and I had to quit my job for a while, before I got down to my regular dose, then I was well enough that I could teach one day a week.....now I’m back to not working......due to wd 

 

it’s like I’m dammed if I do, dammed if I don’t....

 

the depression and anxiety is so bad I don’t want to live......but I have a family who I need to be here for. 

 

Also so I started having anxiety attacks as a toddler. 

 

Our stories are very very similar.....

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Carmie
On 3/16/2019 at 10:56 AM, Dejavu said:

Thank you so much @Carmie! My symptoms of dizziness and PGAD are just so debilitating, that the thought of them being around for 2 years fills me with dread.

 

Its been a tough day. PGAD symptoms woke me in the middle of the night last night. Just about the only thing I had going for me was the ability to sleep. Now it seems that's going to be taken from me too. PGAD is a new symptom - about 5 days old so far, and by far the most unpleasant of my symptoms. I feel as though I've got a UTI and I'm constantly having to use the bathroom.

 

The fact that I can't seem to snap out of deep grief certainly doesn't help. You are always so cheerful and upbeat. How do you do that? I'd love to hear some of your tricks for staying positive. I'm in counseling to work on that. I really like my therapist, but withdrawal is certainly hampering my progress. The good news is he is anti drug, he believes me and has agreed to check out this forum. 

 

Hi Dejavu, 

 

I’m sorry that your symptoms cause you so much stress. I’m dizzy all the time too, but I was already like that before I went into withdrawals due to my illness. I have very low blood pressure and have to sit down all the time, my body is also very weak. Sometimes I can’t even sit up straight in a chair and have to find a lounge or I sit on the floor. My friends are used to me sitting on the floor. 🤣🤣

 

I’m not always cheerful and upbeat, I’ve shed many tears, though I do try to look at the positives still. I have a very creative mind and I can always think of a million different things to do to help me get through waves. Before I knew what was wrong with me I really struggled. Once I found out it was the meds and not me, my spirits lifted as I knew what I’m going through is not permanent. One of the main things that keeps me going is my faith, also my friends. I keep looking at the blessings I have. 

 

What does your counsellor say about the grief?

 

I hope you’re coping as best you can today, Sending hugs 🤗

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Dejavu

Thank you as always, @Carmie. You are a dear to be such help to others in the face of your own suffering.

 

After surviving the steroid eye drops, I am finally seeing tiny improvements, at least I think so. I had a very upsetting experience yesterday which could not be rectified until today, and I am ashamed to admit I had an absolute panicked meltdown! It is shocking how little stress tolerance I have right now. It's like I'm hanging on by a thread 24x7, and any tiny additional stressor puts me in absolute orbit! But...I was still able to calm myself enough to sleep last night, which is something I might not even have been able to do pre-zoloft, as I've always been highly anxious. And of course, resolving the matter this morning was simple, and the worst case scenario I had envisioned did not happen. Even though the meltdown did occur, I still count it as a semi-success in that I was able to self-soothe a bit, enough to get a few hours of REM sleep. Yay me!

 

But the other side to that is, after the situation was resolved, I still felt no relief from the anxiety. It is as though my brain never got the message to stand down. Guess that shows just how sensitive my CNS still is.  Anxiety has been a little high all day. PGAD comes and goes and is pretty severe at the moment but has been completely absent at others. I've had a little dizziness off and on, but not severe. Tonight at around 7pm, I suddenly felt the fog lift and I felt 95% normal - for about 3 minutes. Then it all came flooding back and it was like those 3 minutes never happened. Do you think these improvements - miniscule as they are - indicate that my reinstatement is working? I'm worried because its been 4.5 months and I'm not sure when to give up hope that the RI will work and just start to taper. Starting a taper while unstable sounds to me like a recipe for suffering all the way down, but I'm suffering while sitting still right now too, so sometimes I think I might as well get going on the taper. Interested in all opinions and educated guesses. Thanks!

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Tom37

Just remember that while you are suffering now if you start to taper your suffering could get a whole lot worse.

 

Personally I think you should keeping holding. I thought earlier on that no improvement was going to happen but I have seen improvements in certain symptoms eg, I use to get horrible bone and joint pain - all gone, use to get different headaches constantly - now gone, so symptoms do go and the ones I have now left while are not pleasant are more tolerable. Unfortunately the waves still come but that’s the way it is.

 

Any window no matter how small is positive. Remember a window doesn’t just mean symptoms are gone but also when they are quite a lot less severe. 

 

Unfortunately you can’t put a timeline on recovery from an ri or a crash as everybody is different. Definitely give it a few more months and I’m sure you will see improvement. Not knowing the timeline of this is the most frustrating part of it but we can only go by the experience of others which is that stabilising happens.

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Dejavu

Thanks again for the reminder @Tom37. You've have a few windows so far. When do you think you will resume your taper?

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Dejavu

Something amazing just occurred, something that hasn't happened in 6 months. The dog did something funny...and I laughed! A real laugh! Not just going through the motions - I really felt it. Right down to my toes, just like a normal human. Wow! I've missed me.

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Tom37

Hey,

 

Im not planning on tapering until i get sympton free or close to it and have been for a min of at least 3 months. Also a possiblity i wont taper again and just stay where im at as i cant put myself or my family through withdrawal again. I have windows but they are not sympton free or even close to it during them as yet. My windows are just a signficant reduction in the intensity of my baseline symptoms and without th extra symptoms i get during a wave. My last wave was the most tolerable yet so hopefully that is a sign of progress.

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