☼ gentlehermione: life after ADs

[gentlehermione]

Some words of reassurance from any other long haulers would be most welcome 😉

[direstraits]

You're not alone... still suffering after nine years off, though I did go back on fluoxetine for a while a couple of years ago... maybe that was a mistake 😕.

    We can't give up hope.❤️

[gentlehermione]

Dear @direstraits

 

Thanks for stopping by. I’m sorry to hear you’ve been suffering for nine years 😟

 

You’re right about not giving up hope. I strive to be an optimist but there are some days where WD anxiety just gets the better of me.

 

Hugs from one long hauler to another 🥰

[Tom37]

Hi @gentlehermione

 

Try not to be worried about waves this far out. I know it’s extremely frustrating but it happens and they can be intense as well. 
 

I’m approaching 5 years and in a wave now and while past the worst of it’s still there.

 

The positive is when I’m not in a wave I feel significantly better than those first few years so healing is happening and will be for you too.

 

Withdrawal is unique to us all and as we know bad periods and what feel like setbacks happen and then in time we feel better again.

[gentlehermione]

Hi @Tom37

 

Thank you for your kind words of reassurance which are much appreciated 🥰 Hope you find yourself in a window soon.

 

This wave really blindsided me and has been ongoing for 3 1/2 weeks. I haven‘t experienced anything like this in a long time. My GP suspects B12 deficiency due to my symptoms - tingling in feet, weakness, fatigue and lightheadedness. Will have to wait for the blood test results…

[gentlehermione]

“And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in. That’s what this storm’s all about.” Haruki Murakami

[gentlehermione]

Well, tomorrow will mark exactly six years since coming off my AD and I am still in this major wave 😒

 

Blood work revealed low ferritin but no B12 deficiency. My GP will be referring me to a neurologist and a gastroenterologist for an endoscopy.

 

In 2018 I experienced paresthesia and leg weakness for a couple of weeks - why has it returned five years later??? Perhaps it is not at all WD related...

 

It's so hard to experience a major setback this far out 😟

[Carmie]

Dear @gentlehermione, I’m so sorry to hear that you’re in a wave this far out after being off all your meds. There are a lot of people on this site in a similar position, like Tom too. I don’t know if you’ve chatted to direstraits, but she’s in the same boat. 
 

I see you came off Effexor and Cymbalta really quickly around the same time. I’ve been on and off so many meds myself, all starting with chronic pain. I got such severe Akathisia. I still get it if I taper too quickly. Even if I taper slow I still get symptoms, I woke up last night with nerve pain in my arms, kind of like restless legs, but in my arms. It’s still there a bit this morning. 
 

I hope you’re able to find yourself some distractions when the waves are bad. That’s my go to. Distract! Distract! Distract! 
 

Sending hugs🤗

[gentlehermione]

Dear @Carmie

 

Thanks for stopping by 🥰

 

I initially tapered off Effexor from Jan - July 2017. My then psychiatrist gave me no proper guidance for coming off Effexor 37,5mg. After finishing my taper I experienced heart arrhythmias. My psychiatrist advised (over the phone!) I reinstate but at 150mg!! I had never been on more than 75mg during all those years of treatment. In August I sustained a sudden cardiac arrest. It’s a miracle that I survived. That same psychiatrist switched me over to 30mg Cymbalta while I was in a coma at the hospital. Anyway to try a cut a long story short, I received an implantable cardiac defibrillator which over the ensuing months kept firing and my cardiologist was convinced the SNRIs were the problem. So I had no choice but to cold turkey 😔

 

But I am really beginning to wonder if the CT is behind my prolonged suffering… On the other hand, a close friend who had been on Paxil for seven years tapered off over the course of a month and had no problems whatsoever! Go figure.

 

Distraction and gentle exercise have really helped me through this ordeal. I do hope it will soon come to an end for all us long haulers!

 

Hugs 🥰

 

 

 

[wantrelief]

On 11/16/2023 at 9:03 AM, gentlehermione said:

Well, tomorrow will mark exactly six years since coming off my AD and I am still in this major wave

I am so sorry you are experiencing such a bad wave six years out, gentlehermione. I've read that some people experience a last bad wave and then recovery.....that is my deepest hope for you. 💖

[RachelSusan]

@gentlehermione I am sorry to read that you are in distress.  You mention a friend that went off of Paxil with no problems. I have had a few similar experiences with friends of mine that have gone off a medication with no problem, a medication that I had been trying to get off for years and experiencing much suffering with. While I have been happy for them I have always thought why me?  I assume with time you feel better.

 

After reading your post I wasn't sure if I understood correctly. Were you started on 30mg of Cymbalta while in a coma and then later your cardiologist had you quit it cold turkey due to the cardiac defibrillator firing so frequently? It that is correct it sounds like a lot for you to go through. Something like that can take a lot of time to recover from.

 

I am glad you are with us and recovering. I don't know what the symptoms of you wave are but I do hope they clear up soon.

 

Rachel

 

[gentlehermione]

49 minutes ago, wantrelief said:

I am so sorry you are experiencing such a bad wave six years out, gentlehermione. I've read that some people experience a last bad wave and then recovery.....that is my deepest hope for you. 💖

Dear @wantrelief

 

I‘ve read this too and am secretly hoping… Thank you 🥰

[gentlehermione]

41 minutes ago, RachelSusan said:

 

After reading your post I wasn't sure if I understood correctly. Were you started on 30mg of Cymbalta while in a coma and then later your cardiologist had you quit it cold turkey due to the cardiac defibrillator firing so frequently? It that is correct it sounds like a lot for you to go through. Something like that can take a lot of time to recover from.

 

I am glad you are with us and recovering. I don't know what the symptoms of you wave are but I do hope they clear up soon.

Dear @RachelSusan

 

Thank you for your kind words 🥰

 

I had always been on Effexor - 37,5mg for the last five years before tapering off over roughly six months. Too quick I know but I had not yet found SA. It was after I‘d finished tapering that the arrhythmias started and that was when my psychiatrist jacked my dose up to 150mg. After the cardiac arrest he changed me over to Cymbalta while I was in hospital perhaps hoping that it wouldn’t have any effect on my heart rhythm? Well, it did and my ICD fired 3 times during those three months that I was on Cymbalta. It was terrifying. I then ended up in a clinic where the house psychiatrist (very astute!) decided along with my cardiologist “your problem is your drug” and I CTed under medical observation for ten days. I think it was the smart thing to do as, touch wood, my ICD hasn’t fired since.

 

I haven’t experienced a wave like this in a very long time - paresthesia accompanied by muscle tension and stiffness in my feet and lower legs. Lightheaded/dizziness and heightened anxiety are also present. My GP has referred me to a neurologist and a gastroenterologist. I am, of course, hoping it is “just” withdrawal 

 

It has been a very sad, challenging year for me and my family. One major stressor after another. Perhaps all that has just taken its toll, I really don’t know. I look forward to better days.

 

PS Recovery from my cardiac arrest was peanuts compared to withdrawal…

[RachelSusan]

@gentlehermione Thank you for explaining.  It makes even more sense now.  Wow, what a complicated and difficult ordeal for you to go through. The move to the Cymbalta sounds brutal.  You mentioned you hope it is just withdrawal, it sounds like it is.  Of course you will feel more assured once you complete the additional tests your doctor would like you to have.  Withdrawal is indeed h*ll. No question about it. It is big time suffering and the last thing you and your family need. I have a lot of compassion for how awful you are feeling. I do believe better days are coming your way.  You have your ICD and you will heal from the withdrawal. I just hope that you healing from the withdrawal comes sooner rather than later.

 

 

[gentlehermione]

It‘s been a whopping 7 weeks since this wave started 😶 The paresthesia in my feet and lower legs has diminished to slight tingling and inner vibration at times. The muscle tightness in my legs has gone. Lightheadedness, anxiety and feelings of depression come and go most days. What a roller coaster ride!! 

[Tom37]

Sorry to hear you’re still in the wave. Looks like it’s slowly easing with some of those symptoms easing.

 

Try to be positive about it as you will be overall better once you come out if it and it’s one less wave to go through. 
 

It’s just your brain repairing itself ever so slowly.

[gentlehermione]

1 hour ago, Tom37 said:

It’s just your brain repairing itself ever so slowly.

Yes @Tom37

at what seems to be a snail’s pace!

 

I saw the neurologist yesterday. Accordingly to the different tests there were no signs whatsoever of polyneuropathy or small fiber neuropathy. I was told that the paresthesia I’m experiencing is due to withdrawal. So, I was quite relieved - but at the same time that’s what I’d expected.

 

Two months today since this wave started…

 

[Tom37]

Hi @gentlehermione how have you been feeling? Hopefully wave is easing?

[gentlehermione]

Hi @Tom37

 

Thanks for asking. The symptoms seem to be decreasing somewhat  in intensity and I’m feeling more positive than I have been in a while. Perhaps it was the shock of being thrown into such a massive wave after six years of WD that initially made me panic. Anyway, I am definitely now in a better place mentally than I was 9 weeks ago when all this started.

 

We’ll get through this 😉

[Farm24]

On 11/6/2023 at 4:30 AM, gentlehermione said:

I wrote on the The Windows and Waves Patterns of Stabilization thread:

 

”Over time the waves have lessened in intensity and are of shorter duration.”

 

Maybe I should have kept my mouth shut!

How are you feeling now? 6 years?!

[gentlehermione]

On 2/24/2024 at 3:25 PM, mingo26 said:

How are you feeling now? 6 years?!

Hi @farm24

 

To be honest, 6 years and three months down the road, I feel I‘m still in protracted withdrawal. However the symptoms are, in general, manageable. I went through a hefty 9 week wave which started last fall but since it ended I‘ve been better. Over the past two months I seem to have been “cycling” through a variety of symptoms - muscle tension, joint pain, bouts of intense anxiety but as mentioned before, all manageable. My osteopath is an 👼 

 

Now in my seventh year of withdrawal I’ve learned to try and keep a positive mindset and just try and get through the bad days when they arrive.

 

You will certainly recover more quickly than I have. I was on Effexor for almost twenty years and was obliged to cold turkey (medical reasons).

 

Sending you healing vibes 🥰

[Farm24]

On 2/25/2024 at 5:41 AM, gentlehermione said:

Hi @farm24

 

To be honest, 6 years and three months down the road, I feel I‘m still in protracted withdrawal. However the symptoms are, in general, manageable. I went through a hefty 9 week wave which started last fall but since it ended I‘ve been better. Over the past two months I seem to have been “cycling” through a variety of symptoms - muscle tension, joint pain, bouts of intense anxiety but as mentioned before, all manageable. My osteopath is an 👼 

 

Now in my seventh year of withdrawal I’ve learned to try and keep a positive mindset and just try and get through the bad days when they arrive.

 

You will certainly recover more quickly than I have. I was on Effexor for almost twenty years and was obliged to cold turkey (medical reasons).

 

Sending you healing vibes 🥰

Well I just feel for you. My biggest issue is the muscle contraction.  It makes my life pure heck.  I was just reading f through this forum last night.  Such a shame what these meds can do to a person.  

[gentlehermione]

On 2/25/2024 at 6:18 AM, mingo26 said:

Such a shame what these meds can do to a person.  

@farm24

 

Indeed. I’ve lost all faith in psychiatrists and have become very wary of any other doctors. 

[Farm24]

On 2/25/2024 at 6:45 AM, gentlehermione said:

@farm24

 

Indeed. I’ve lost all faith in psychiatrists and have become very wary of any other doctors. 

I have as well.  It has turned alot of what I believed to be true on its head.  

[gentlehermione]

Six years and four months post CT (for medical reasons) I find myself in a bad place with extreme anxiety - it's almost comparable to acute ☹️ I'm aware that healing in withdrawal is not always linear but that the symptoms should be this intense after so long is just plain cruel!!!

 

 

[RachelSusan]

@gentlehermione I am very sorry to read about your anxiety. It is indeed cruel.  I hope that your symptoms resolve soon. 

[withhopeinmyheart]

I'm so very sorry you still have to deal with this. Not gonna lie this scares me. Especially because my CNS reacts to the presence of withdrawal with the freeze response...

Hope you'll feel better soon! 

[Doctorsrcrap]

@gentlehermione

Did you take anything?

[gentlehermione]

@RachelSusan @withhopeinmyheart thank you for your kind wishes 🥰

[gentlehermione]

52 minutes ago, Doctorsrcrap said:

@gentlehermione

Did you take anything?

 

No, nothing. It could have something to do with the onset of spring which has often, in the past, been a difficult time for me. The change in season seems to rev up my CNS. Other than that I have no explanation 😟

 

Or perhaps it's just protracted withdrawal rearing it's ugly head once again:

 

 

[gentlehermione]

Still in the thick of it 😞 I’m cycling through all kinds of symptoms - nausea, dizziness, cold feet which are probably all due to the extreme anxiety I‘ve been experiencing. Muscle pain/tension has resurfaced. 
 

6.5 years out next month…

 

 

[Doctorsrcrap]

Sorry to hear you are suffering. I'm starting to think we just don't recover or if you do it's few and far between. Sick of it 

[wantrelief]

Hi @gentlehermione,

 

I am so sorry you are still in the thick of it. From everything I've read and heard, cycling through symptoms is a sign your brain is healing, that this is the brain trying to find its way to normalcy. Even when it feels like you are going backwards or worsening, it is actually healing happening. As paradoxical as it sounds and feels, it kind of makes sense to me.

 

I came upon this video today and found it helpful.  I know how awful it is to keep doing this day after day after day and how hard it is to feel hope when you are feeling so utterly miserable and far from yourself. I hope the testimonies in the video help you feel a bit of hope.💖

 

 

 

 

[BaccatePlayer]

5 hours ago, wantrelief said:

From everything I've read and heard, cycling through symptoms is a sign your brain is healing, that this is the brain trying to find its way to normalcy. Even when it feels like you are going backwards or worsening, it is actually healing happening. As paradoxical as it sounds and feels, it kind of makes sense to me.

That really clicked for me now when I needed hope. Thanks @wantrelief for bringing others light and I wish @gentlehermione lots of resilence too!

[EPD6893]

Just now, BaccatePlayer said:

That really clicked for me now when I needed hope. Thanks @wantrelief for bringing others light and I wish @gentlehermione lots of resilence too!

Good luck with your own recovery too! 😁

[gentlehermione]

On 4/20/2024 at 7:20 AM, wantrelief said:

I came upon this video today and found it helpful.  I know how awful it is to keep doing this day after day after day and how hard it is to feel hope when you are feeling so utterly miserable and far from yourself. I hope the testimonies in the video help you feel a bit of hope.💖

Dear @wantrelief

 

Many thanks for your kind words of reassurance and the upbeat video - just what I needed ❤️

 

I strive to be positive but there are some days where WD just gets the better of me. The duration is probably wearing me down at times. 
 

Fortunately, the symptoms have eased a bit today and I’m feeling hopeful again  🙂

 

Hugs

GH