☼ gentlehermione: life after ADs

[gentlehermione]

Until July 2017 I was an active, healthy female (58). I'd been extremely fortunate in that, the only health problem I'd ever encountered had been anxiety/low grade depression. At least that's what the doctors diagnosed 20 years ago. I was put on Effexor 75mg and then, some years later, reduced the dosage to 37.5mg. In January 2017 I started tapering off my medication and by July was off Effexor. I did experience the odd brain zap but could easily go about my daily business. Suddenly at the end of July, I started having what I thought to be panic attacks (but which were, in actual fact, heart arrhythmias) and my then psychiatrist put me back on Effexor albeit 150mg/day. At 2am on August 12th, I had a sudden cardiac arrest. Thankfully one of our dogs wakened my husband and he and my daughter performed CPR until the ambulance arrived. My guardian angel was watching over me and after a week in the hospital, where I was fitted with an ICD and was put on 30mg Cymbalta, I returned home.

 

Fast forward to three weeks later. My ICD fired. Off to hospital. In for observation for a week but no arrhythmias could be detected   Returned home and 24 hours later the ICD fired again! In hospital for another 10 days, had a catheter ablation but no structural heart damage was found. What they did find was that one of the ICD leads had moved and pushed itself through one of the heart walls which could have explained the shocks. So another intervention to replace the lead. I was still on Cymbalta and an anti-arrhythmic drug.

 

Just when I was beginning to think I was on the road to recovery, my ICD fired on the 12th of November. Off to hospital. In for ten days where I met a fascinating psychiatrist who thought that my SCA could have been induced by going back on Effexor as it's known to have a potential influence on cardiac rhythms. And since Cymbalta is also a SNRI, it would be advisable to stop taking it. Well since November 17th I'm Cymbalta-free and yes, I went cold turkey which I normally would not have done under other circumstances.

 

Initially I experienced, brain zaps, anxiety and irritability. However, the symptoms were bearable. I’ve been taking vitamin D3, magnesium and Omega 3 supplements and trying to eat all the right foods. I walk my dogs every day so am getting exercise and fresh air on a regular basis and I go for acupressure treatments (suggested by my new psychiatrist).

 

I was progressing quite well until March 2018 when I started experiencing severe anxiety, dizziness, muscle tension and headaches.The situation has improved every so slightly since then.

 

Am I experiencing what is known as protracted withdrawal?

 

 

[Petunia]

Welcome Gentlehermione,

I'm sorry about everything you've been going through, but glad to hear that your heart problems have settled down now.

 

Unfortunately, you may be in protracted withdrawal from your Cymbalta CT late last year. After being on these kinds of drugs for over 20 years, stopping them suddenly is bound to cause some problems for the brain and nervous system, what you describe does sound like typical symptoms of withdrawal. Over time, these drugs change your nervous system. Their effects on your nervous system change as well.  These changes are temporary, but the CNS does take quite a while to right itself after the drugs are out of the body.

 

I will post some links which may be helpful:

 

What is withdrawal syndrome?

 

Dr. Joseph Glenmullen's withdrawal symptom checklist

The Windows and Waves Pattern of Stabilization

Delayed onset of withdrawal symptoms - Surviving Antidepressants

 

Protracted Withdrawal or PAWS (post-acute withdrawal syndrome ...

 

The best I can offer by way of advice is to listen to your body and avoid those things that set off symptoms as much as possible. Aside from a high quality fish oil and magnesium, avoid supplements. (See King of Supplements: Omega 3 Fatty Acids (Fish Oil) and Magnesium, Nature's Calcium Channel Blocker). They've been helpful to many of us. 

 

Here is the link to our symptoms and self care section, you may find some useful ideas to help manage symptoms as you recover.  Especially read the topics pinned at the top.

 

I have also been recovering from long term use of antidepressants, having stopped them much to fast. Its taken a while, but I'm almost back to normal now. Don't worry, you will get better, it may take some time though. 

 

You can use this thread as your ongoing journal to track progress, write about symptoms, ask questions and communicate with the community, add to it whenever you want. Its a good idea to bookmark it or follow it, so its easy to find again.

 

I'm glad you found us, there is a lot of friendly help and support here.

 

Petunia.

 

 

 

Edited June 9, 2018 by Petunia
added a link

[gentlehermione]

Thank you for your kind words and advice, Petunia 😃

 

As I received virtually no sound advice from my ex-psychiatrist regarding tapering off Effexor - the only thing he said was to "not taper too quickly" - I believe the heart arrhythmias which I started experiencing in July were a direct result of coming off it too soon: http://www.withdrawal.org/prescriptions/signs-symptoms-treatment-effexor-withdrawal/  Have a look at Dangerous Effects of Effexor Withdrawal. I've been told by several cardiologists that my heart is structurally in great shape. None of them could find an explanation for the arrhythmias. 

 

Since I had started back on 150mg Effexor a few days before my cardiac arrest, they replaced the Effexor with Cymbalta at the hospital. 

 

Btw, my daughter told me (I was, at that time, still comatose) that one of the head doctors at the hospital referred to Effexor as "heart poison"...

[gentlehermione]

Had a really good day last Saturday 🎉 (virtually no dizziness, muscle tension, anxiety) and then Boom! Bad dizziness returned with all the other symptoms on Tuesday and has continued until today. I gather, from what I've read on the forum, that this is not unusual. I'll be 8 months Cymbalta-free at the end of this month. After reading some of the success stories on benzobuddies.org. I've come to the conclusion that my recovery is going to probably take longer than I initially expected... 😕

[gentlehermione]

As of yesterday, I'm now at the 8 month Cymbalta-free mark 😀 Still experiencing dizziness on a daily basis however some days it does lift for a couple of hours. The headaches and neck tension seem to be a thing of the past (touch wood!). Anxiety is present but some days more than others. My social life is ok - I am able to attend the odd function although I usually have to leave early due to the overwhelming fatigue that kicks in after 10 pm. I get the odd palpitation which tends to send my anxiety through the roof but that's due to the heart issues I experienced last year.

 

All said and done, I feel I'm making some slow progress 😐

[Carmie]

20 hours ago, gentlehermione said:

As of yesterday, I'm now at the 8 month Cymbalta-free mark 😀 Still experiencing dizziness on a daily basis however some days it does lift for a couple of hours. The headaches and neck tension seem to be a thing of the past (touch wood!). Anxiety is present but some days more than others. My social life is ok - I am able to attend the odd function although I usually have to leave early due to the overwhelming fatigue that kicks in after 10 pm. I get the odd palpitation which tends to send my anxiety through the roof but that's due to the heart issues I experienced last year.

 

All said and done, I feel I'm making some slow progress 😐

 

That’s great Gentlehermione, 

 

Glad you’ve gotten off your meds and that some of your symptoms are now lessening. That gives one hope, doesn’t it? 

 

Slow progress is is better than no progress. You’re moving forward which is great. Just keep chugging along one day at a time. We will all get there in the end. Patience is needed. It’s still going to take me many years to get off my meds but one day I’ll be saying the same thing as you: “ It’s been eight months since I’ve been off Seroquel.”😀

 

Thanks for sharing💚

[Carmie]

P.s. I’m sorry you had to cold turkey off your meds because of medical reasons.

 

Sending you hugs🤗

[gentlehermione]

4 hours ago, Carmie said:

Slow progress is is better than no progress. You’re moving forward which is great. Just keep chugging along one day at a time. We will all get there in the end. Patience is needed.

 

Yes, Carmie, endless patience!

My greatest regret is that I took Effexor for so long. Not once did my then psychiatrists (I'm on no. 5 now and it's taken me 25 years to find her) ever suggest coming off the medication and I, being the compliant patient, stupidly never questioned their professionalism 😕

 

Good luck with your continuing taper. I hope you are spared an all too rocky road to becoming drug-free 😉

[gentlehermione]

I think I'm in the ten-month wave ☹️ The dizziness hit an all time high last Thursday and hasn't really abated since. That combined with anxiety and palpitations... I'm trying very hard to stay positive through all this but it's becoming more and more difficult. 

 

If it were winter, I'd go and hibernate...

[Carmie]

26 minutes ago, gentlehermione said:

I think I'm in the ten-month wave ☹️ The dizziness hit an all time high last Thursday and hasn't really abated since. That combined with anxiety and palpitations... I'm trying very hard to stay positive through all this but it's becoming more and more difficult. 

 

If it were winter, I'd go and hibernate...

 

Hi Gentlehermoine, 

 

Im so sorry your wave is going so long. I’m dizzy all the time too, my blood pressure is really low. I can’t stand in one spot for very long at all. I always sitting on the floor. 

 

Hibernating sounds good😂. 

 

Hang in there. Positivity comes in spurts, doesn’t it? I just had a fun time at my sister’s place. Made lots of happy memories. My motto is always make happy memories while in windows and then distract, distract, distract while in waves.

 

Hang in there💚💚

 

 

 

 

[gentlehermione]

3 hours ago, Carmie said:

Hang in there💚💚

 

 

@Carmie

 

Thank you ❤️

 

Apart from the dizziness I've actually been rather fortunate re physical symptoms. Many of the previous ones seem to have disappeared, hopefully for good.

However the dizziness has been quite tenacious and somehow I wasn't expecting it to get worse - but it has. 

[Carmie]

5 hours ago, gentlehermione said:

 

@Carmie

 

Thank you ❤️

 

Apart from the dizziness I've actually been rather fortunate re physical symptoms. Many of the previous ones seem to have disappeared, hopefully for good.

However the dizziness has been quite tenacious and somehow I wasn't expecting it to get worse - but it has. 

 

Hi Gentlehermione, 

 

Well that’s certainly a blessing that your symptoms aren’t too bad. Dizziness makes things very hard though, I’m always having to sit down n sometimes even sitting in a chair is too much. I have to put my feet up. Again, it’s due to low blood pressure from the CFS, which is also a CNS illness.

 

Once your system eventually reaches homeostasis the dizziness will probably go away. This process just takes a lot of time. It’s pretty much a day at a time, but we will get there in the end.

 

Ive learnt over the last few years that I too can eventually get over CFS, but not until this business with the meds is over which will still take a really long time. I try and not think about it too much and just live in the moment. 

 

One thing that has helped me in the past with dizziness was acupuncture. You have to go very regularly though. Everyone’s body is different though, so what works for one person may not work for another. 

 

Hope your dizziness doesn’t last too much longer💚

 

 

[gentlehermione]

On 7/11/2018 at 8:09 PM, Carmie said:

 

One thing that has helped me in the past with dizziness was acupuncture. You have to go very regularly though. Everyone’s body is different though, so what works for one person may not work for another. 

 

Hope your dizziness doesn’t last too much longer💚

 

 

I go for acupressure colour therapy every two weeks. My therapist has been concentrating on the anxiety (and the dizziness stems from the anxiety).

 

I, too, hope the dizziness at least dissipates a bit soon...

 

From one dizzy bat to another 👍

 

 

[gentlehermione]

This journey is a heavy-duty long haul 😔 

 

Christina Rossetti, one of my favourite poets:

 

 

Up-Hill

 

Does the road wind up-hill all the way? 

   Yes, to the very end. 

Will the day’s journey take the whole long day? 

   From morn to night, my friend. 

 

But is there for the night a resting-place? 

   A roof for when the slow dark hours begin. 

May not the darkness hide it from my face? 

   You cannot miss that inn. 

 

Shall I meet other wayfarers at night? 

   Those who have gone before. 

Then must I knock, or call when just in sight? 

   They will not keep you standing at that door. 

 

Shall I find comfort, travel-sore and weak? 

   Of labour you shall find the sum. 

Will there be beds for me and all who seek? 

   Yea, beds for all who come.

 

[Carmie]

1 hour ago, gentlehermione said:

This journey is a heavy-duty long haul 😔 

 

Christina Rossetti, one of my favourite poets:

 

 

Up-Hill

 

Does the road wind up-hill all the way? 

   Yes, to the very end. 

Will the day’s journey take the whole long day? 

   From morn to night, my friend. 

 

But is there for the night a resting-place? 

   A roof for when the slow dark hours begin. 

May not the darkness hide it from my face? 

   You cannot miss that inn. 

 

Shall I meet other wayfarers at night? 

   Those who have gone before. 

Then must I knock, or call when just in sight? 

   They will not keep you standing at that door. 

 

Shall I find comfort, travel-sore and weak? 

   Of labour you shall find the sum. 

Will there be beds for me and all who seek? 

   Yea, beds for all who come.

 

 

Hello my fellow dizzy bat, 

 

That’s a beautiful poem😍

[gentlehermione]

22 hours ago, Carmie said:

That’s a beautiful poem😍

 

 

@Carmie

 

Yes, isn't it? 

 

I see myself trudging along uphill (the road to recovery) with the inn as my destination. All the other "wayfarers" there are on the same journey but because they have already passed this road, are closer to full recovery. Just my interpretation 😉

 

 

[gentlehermione]

I haven't posted on here for a while as I wanted to wait until there had been some signs of improvement. In spite of some (very) off days, I seem to have made a bit of progress. The general picture is not as dismal as it was a couple of months ago. I'm no longer suffering as often from debilitating fatigue. The dizziness is not quite as intense however I seem to have PVCs more frequently ( I don't know which is more disconcerting!). There are still days where feelings of anxiety and depression alternate.

The icing on the cake atm is that my husband broke a couple of bones in his foot last weekend and will be on crutches for the next six weeks. Decidedly, when it rains it pours...

Btw, coming up to 11 months off ADs soon.

 

PS There are, of course, still days of profound despair when I wonder whether I'll ever make it through this ☹️

[SkyBlue]

13 hours ago, gentlehermione said:

I seem to have made a bit of progress

 

Dear Hermione, that is great news.

 

Also, don't feel that you have to wait to see progress, in order to post here. Just a gentle reminder that it can also be comforting to post during the "down" times. Although we love to hear about progress, this forum is also very much about supporting each other during the rough moments, or the times when healing seems sooo slow. 

 

Wow, can I ever understand that profound despair you spoke of. I think many of us can. Even in the midst of healing, rough days can come and  we can wonder how or if we're going to make it. You are definitely going to make it. And from what I hear, the journey is very much worth it.

 

I just saw the poem you posted by Christina Rossetti; I love that. I like her too; I need to look for more of her work. Thanks for sharing that.

Edited September 13, 2018 by SkyBlue
added one word

[gentlehermione]

On 9/13/2018 at 6:30 AM, SkyBlue said:

Even in the midst of healing, rough days can come and  we can wonder how or if we're going to make it. You are definitely going to make it.

 

 

Thank you SkyBlue for your kind words of encouragement.

 

Unfortunately I seem to have hit a massive wave - dizziness alternating with anxiety, depression, panic, neck tension and headaches throughout the past two days. It hit just after I'd posted here 🙄 

I believe I went through the ten-month wave, which lasted about three weeks, at 9 months. Keeping that in mind, could this perhaps be the 12-month wave (coming up to 11 months soon)? 

 

Before I started tapering off Effexor last year I had NO IDEA of the havoc wreaked by all these psych meds! And of course my ex-psychiatrist did not enlighten me...

When I look at the number of people on this forum who are suffering so profoundly, it breaks my heart. I wish you all strength, faith and perseverance ❤️

[gentlehermione]

This wave is just awful, probably on a par with the ten-month wave, if not worse 😔 It's at times like these that I really wonder whether or not I'll ever make it out of this hell. A week away from the 11 month mark and it feels like so much longer. Talk about just trying to get through each day half functioning. I realise I should never have CTed off Cymbalta but I had no choice due to my heart issues (see above).

 

Perhaps this wave was triggered by my husband's accident (he is very much incapacitated) and the fact that DD is back at university. Just when I thought I was making some progress...

 

I've had a new symptom for the past three days - cold hands. No tingling or numbness just freezing cold. The only thing that will warm them up is putting them in a basin of hot water. Has anyone experienced the same?

 

In all these negatives, there is one positive - I've been blessed, so far, with sleeping quite fitfully (usually 8 hrs/night).

 

[gentlehermione]

Now I have both cold hands and feet and at times they tingle or burn a bit. Anxiety is quite bad these days, dizziness too. The withdrawal whiplash along with head pressure have been gone for the last two weeks or so however I now have muscle pain in my thighs, calves and back 🙄 

 

My dogs, who get me out into nature everyday, have been a godsend in these difficult times ❤️

[Carmie]

Hi gentlehermoine, 

 

Im sorry you’ve been in a wave. I hope you get some windows inbetween. All you can do in waves is distract yourself. I hope you have lots of distractions, I’ve got a million of them😀. I find arts n crafts good, also DVDs n Netflix, music, photography, going out in nature etc etc. The list is endless. 

 

I hope you get a good window soon, Sending hugs🤗

[gentlehermione]

@Carmie

Thank you for your kind words ❤️

 

Yes, I do try to distract myself as much as possible. I, too, believe that is the only way forward. It's just been a bit more demanding for the past few weeks with these new physical symptoms.

 

Hope you are faring well! We just continue to soldier on...

[gentlehermione]

Feeling afraid 😨Just returned from a walk and my legs seemed to just get slower and my ankles stiffer. This happened yesterday, too. It got to the point where I wondered whether I was going to make it home!

 

Is this a typical withdrawal symptom??? I'm almost a year AD-free...

[powerback]

46 minutes ago, gentlehermione said:

Feeling afraid 😨Just returned from a walk and my legs seemed to just get slower and my ankles stiffer. This happened yesterday, too. It got to the point where I wondered whether I was going to make it home!

 

Is this a typical withdrawal symptom??? I'm almost a year AD-free...

Firstly well done being off ADs,don't be afraid it will be ok just rest ,the body will still be healing ,make sure you nourish your system to help with energy ,its fairly normal ,im a big walker ,I love it ,some days I cant move and others I get a good few kms in ,I got better at skipping days and just resting .read your body without panic taking over .

Take care .

[gentlehermione]

2 hours ago, powerback said:

don't be afraid it will be ok just rest

 

@powerback

 

Thank you for your reassurance! You're right about the rest - I probably pushed myself too hard today. 

[Carmie]

6 hours ago, gentlehermione said:

@Carmie

Thank you for your kind words ❤️

 

Yes, I do try to distract myself as much as possible. I, too, believe that is the only way forward. It's just been a bit more demanding for the past few weeks with these new physical symptoms.

 

Hope you are faring well! We just continue to soldier on...

 

Hi gentlehermoine, 

 

Yes, all we can do is continue to soldier on from one day to the next, from one hour to the next. Some days we are barely hanging in there n other days we are not so bad. Distracting is all we can do on those bad days. 

 

3 hours ago, gentlehermione said:

Feeling afraid 😨Just returned from a walk and my legs seemed to just get slower and my ankles stiffer. This happened yesterday, too. It got to the point where I wondered whether I was going to make it home!

 

Is this a typical withdrawal symptom??? I'm almost a year AD-free...

 

I’m sorry you’re feeling scared. This journey is the scariest journey we will ever take. Yes, anything can be a symptom in withdrawals. There’s someone on here that gets bad pain their limbs from withdrawals. Don’t push yourself, if you do too much it can ramp up your CNS. Nice slow walks with rests inbetween. 

 

Skip some days like powerback said n have rest days. I hope your fear settles today💚

 

 

[powerback]

45 minutes ago, gentlehermione said:

 

@powerback

 

Thank you for your reassurance! You're right about the rest - I probably pushed myself too hard today. 

It took me ages to give in and learn to rest ,I pushed it too far but still enjoy lighter walks .

Peace.

[LarryS]

If you continue to experience dizziness, it could be from inside your ear where ballance is sensed.  An ear nose and throat doctor may be able to help.

[Happy2Heal]

hi gentlehermoine,

just popping by to see how you are doing

hope all is well with you

 

[gentlehermione]

@Happy2Heal

Thanks for enquiring 😄

I'm very happy to say that I've been feeling better for the past four weeks. Some of my symptoms (dizziness, muscle and joint pain) seem to have disappeared. I still have paresthesia in my hands and feet although it's not as bad as it was a couple of months ago. Anxiety and depression check in every now and then but don't hang around for very long. There are days when I experience numerous heart palpitations but I'm learning how to deal with them more effectively. 

Where I am at the moment is ok. I'm looking forward to further improvement in the future 😉

 

 

[Carmie]

Hi gentlehermoine, 

 

That’s great news you’ve been doing well for the last month. Your body is slowly healing, the capacity for our brains to deal despite the torture they’ve been through is amazing. 

 

How are your dogs doing? Still having fun on your walks with them?

 

Wishing you all the best in your continued recovery 💚

[gentlehermione]

17 hours ago, Carmie said:

How are your dogs doing? Still having fun on your walks with them?

 

Hi Carmie

 

Unfortunately the two oldies (15 &16) went to the Rainbow Bridge within a few months of each of other - I cried a river 😢 Now we just have two Spaniels. I'm convinced that the daily walks with them have been my salvation. 😇

 

Hope you're coping well 😊

[Carmie]

Hi gentlehermoine, 

 

That’s sad you lost your dogs. It really is one of the most heartbreaking things to lose animals, I can’t even watch movies where animals die without bawling my eyes out. I’m glad you’ve got two new fur babies, have fun taking them for walkies. I’ve got a cat, can’t take her for a walk. 

 

I don’t know if you’re on Instagram but there’s the cutest cat on there called angelbengal, Angel travels everywhere with her owner and loves going on planes etc. She ( or is it a he?) looks soooo happy in the videos, such a little explorer. So curious about everything. I think animals are amazing, a wonderful distraction that warms the heart when going through withdrawals.

 

Take care, and I hope you have more good days💚

 

[Happy2Heal]

On 1/10/2019 at 4:22 PM, gentlehermione said:

@Happy2Heal

Thanks for enquiring 😄

I'm very happy to say that I've been feeling better for the past four weeks. Some of my symptoms (dizziness, muscle and joint pain) seem to have disappeared. I still have paresthesia in my hands and feet although it's not as bad as it was a couple of months ago. Anxiety and depression check in every now and then but don't hang around for very long. There are days when I experience numerous heart palpitations but I'm learning how to deal with them more effectively. 

Where I am at the moment is ok. I'm looking forward to further improvement in the future 😉

 

 

glad that you're feeling better, that some symptoms are gone and others are not as bad as before- that's progress   It lets you know you are healing, which is always encouraging.

I hope that soon your "ok" will be a "good" most of the time

 

 

Edited January 12, 2019 by Happy2Heal
spelling errors

[Carmie]

Hi gentlehermoine, 

 

How are you doing?💚