CashmereCat: Cat hasn't landed on her feet

[CashmereCat]

Hi everyone,

My story is not much different from everyone else's. I have been on Effexor for 6 years and started tapering in April 2020.  I hadn't had a clue then so I just dropped down 25% . Later I found the recommended guidelines and tapered no more than 10%. My last taper was in September 2020. And I haven't been able to stabilize ever since.

My worst symptoms are dizziness and unsteadiness. It varies from feeling faint all day long to feeling unable to control my legs. I can still walk but it is so scary, weird and frustrating. It feels like I get a push every few steps and I can barely keep myself from falling over. 

There's a feeling like my head is a big empty box with a brick in it. Every time I move my head the brick hits the walls hard and makes me wobble and freak out. 

The most frustrating thing is that it's been 9 months since my last taper and there's no improvement. My legs feel like jelly, my balance is poor. I searched this site and haven't been able to find anything similar. 

I would like to get some reassurance from the wealth of your experience. It feels like everyone gets better but me. Is it possible to feel this way from withdrawal for so long?

 

Edited July 5, 2021 by Gridley

[Gridley]

Welcome to SA, CashmereCat.  Thank you for completing your drug signature.

 

It is definitely possible (and not at all uncommon) for you to feel this way from withdrawal for this long.  I hope that this will reassure you somewhat. You will land on your feet, but it will take some time.  I would advise that you continue to hold at 95mg and make no further changes.  

 

Are you taking any supplements?

 

There are no definite discernible cause-and-effects about withdrawal, but my best analysis is that the initial 25% drop destabilized you and the subsequent 10% drops, occurring within your sensitized system, further destabilized you.  You are experiencing what is known as paws, or pst-acute withdrawal syndrome.  Doctors, who get their information from the pharmaceutical companies who have no incentive to publicize protracted withdrawal, don't believe in withdrawal.  So if your doctor tells you it is impossible for you to feel this way from withdrawal, that doctor is uninformed and just plain wrong.  

 

The symptoms you describe are typical and "normal" for withdrawal.  

Dizziness, vertigo, light-headedness, rocking or swaying ...

There are several threads on withdrawal and dizziness on this site, and it would be worth your while to take a look to see what other members' experiences have been.  Google SurvivingAntidepressants.org dizziness.

 

So that you have a better idea of what you're experiencing, here is some information on protracted withdrawal, withdrawal in general and the healing process.

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

What is withdrawal syndrome.

 

Daily Checklist of Antidepressant Withdrawal Symptoms (PDF) 

 

The Windows and Waves Pattern of Stabilization

 

When we take psychiatric medications, the CNS (central nervous system) responds by making changes over the months and years we take the drug(s). When the medication is discontinued, the CNS has to undo all the changes it made. Rebuilding the neurotransmitter production and reactivating the receptor and transporter cells takes time -- during that rebuilding process symptoms occur.  

 

These explain the healing process really well.

 

Brain Remodelling 

 

Video:  Healing From Antidepressants - Patterns of Recovery

 

We don't recommend a lot of supplements on SA, as many members report being sensitive to them due to our over-reactive nervous systems, but two supplements that we do recommend are magnesium and omega 3 (fish oil). Many people find these to be calming to the nervous system. 

 

Magnesium, nature's calcium channel blocker 

 

Omega-3 fatty acids (fish oil) 

 

Add in one at a time and at a low dose in case you do experience problems. Get supplements that are single ingredient (not mixed with other types of supplements).

 

This is your Introduction topic ask questions and connect with other members.  We're glad you found your way here.

 

 

[CashmereCat]

Thank you , Gridley for your quick reply. It certainly helps to know that my symptoms could be WD. I have been doing all the right things - eating healthily, taking Omega-3s, going for walks every day. But walks have been more torture than pleasure what with trying to keep my balance and feeling faint all the time. 

I had always been fit and healthy. I loved exercise, played tennis, did yoga, pilates. And now basic walking is a problem! How is that possible? Something so basic is so hard! 

My GP has been OK with my taper. She doesn't mind when I tell her I want to hold it for longer. But she does sound sceptical and tells me that 9 months is way too long and no way it could be WD. Which obviously makes me doubt myself even more.

I would like to hear about similar experiences. I will look through the files you recommended.

[Gridley]

8 hours ago, CashmereCat said:

I had always been fit and healthy. I loved exercise, played tennis, did yoga, pilates. And now basic walking is a problem! How is that possible? Something so basic is so hard! 

We have seen this so often in withdrawal, members who were previously very athletic, who now can't do anything near what they used to be able to do.  Just do what you can.  Be kind to yourself and don't push yourself.  At this point just a getting a bit of sunshine and fresh air may be enough.  Withdrawal affects every aspect of the central nervous system, in ways that you'd never have imagined.

 

8 hours ago, CashmereCat said:

But she does sound sceptical and tells me that 9 months is way too long and no way it could be WD. Which obviously makes me doubt myself even more.

We have worked with thousands of people, and 9 months of withdrawal is very common.  More than 9 months is also common.  I'd encourage you not to doubt yourself.  As I've said, doctors are very blinkered about withdrawal.  They just don't understand it.  It's the "elephant in the room" that they can't see.   Let's hope you heal very, very soon, but it's good to also be aware that it may take a while. 

 

Hang in there (I know it's not easy) and take good care of yourself and make no drug changes.  

 

Take a look at these non-drug techniques for coping with withdrawal and see which you think might be helpful to you.

 

Non-drug techniques to cope

 

 

 

[CashmereCat]

Thank you for your kind words Gridley. 

I try to stay positive but I am always afraid that tomorrow I will feel worse. Like today , while I was walking my balance was worse, my legs felt like jelly, I  I keep thinking what if my legs totally give up and I can't walk at all?

It's not possible to get paralyzed from WD, is it? 

[Kostas]

Hi ,

From what I have read ,

this jelly legs feeling ,is common in wd and is a kind of paraesthisia

( a brain perception, without a medical problem).

 

Whenever an EMG was performed for this reason, the muscles proved absolutely solid ,and this feeling gradually improved and gone. 

 

Best regards and speedy healing from a sunny Greek island. 

[mstimc]

Hi Cashmere

 

On 7/5/2021 at 9:12 PM, CashmereCat said:

My GP has been OK with my taper. She doesn't mind when I tell her I want to hold it for longer. But she does sound sceptical and tells me that 9 months is way too long and no way it could be WD. Which obviously makes me doubt myself even more.

I would like to hear about similar experiences. I will look through the files you recommended.

 

My WD and recovery journey lasted about three years, so you could definitely be dealing with it after nine months.  And don't worry--not all of that time was spent in deep WD.  I use three years from the beginning of my first attempt at tapering to when I felt I could deal with things on a normal basis--it was gradual and sometimes unnoticeable but I did recover. 

 

12 hours ago, CashmereCat said:

I try to stay positive but I am always afraid that tomorrow I will feel worse. Like today , while I was walking my balance was worse, my legs felt like jelly, I  I keep thinking what if my legs totally give up and I can't walk at all?

 

I dealt with serious health anxiety during WD, and commonly went down the "what if" rabbit hole. I'm not sure if my doctor loved me for all the money I gave him or if I drive him nuts with all my symptoms. The mind is a powerful thing and can exert tremendous control over your body.  When you're in WD, your thoughts are running faster than your reason can deal with them.  I can't tell you how many terrible diseases I thought I had and not one of them was a real problem.  Of course, there's nothing wrong with having things checked, but try to accept that when tests come back negative or symptoms seem to shift from one part of your body to another, the most likely cause is WD.  Recovery starts with managing your fears and stopping them from creating their own reality.  You can recover!

 

 

[Greatful]

@CashmereCat Welcome.  I am sorry you are experiencing such crazy WD symptoms.  You have done a fantastic job keeping it together this long.  It is shocking and scary how these drugs affect  our body.  Waiting for it to get better is frustrating.  Time and patience are key in our recovery.  Remember you are not alone.

Post here often to let us know how you are doing.  Reaching out and talking to others that can relate to what you are going through is reassuring and it encourages us to move forward another day.  

I am here if you ever want to talk

Take care 

[CashmereCat]

@GreatfulThank you for you reply,

The scary things for me that I have worse symptoms now than I had 9 months ago when I tapered 10 %. 

But I am trying to be patient. 

[CashmereCat]

@KostasThank you Kostas,

This is the worst not to be able to explain or understand your symptom!

I have had it all with this WD - nausea, GI problems, heart palpitations, headaches , joint and muscle pains. All of those are kind of obvious and understandable. But this one is ridiculous! 

 

P.S I have a Greek Friend in Athens. One day, when the world madness is over I ll visit him.

[CashmereCat]

@mstimc

Hi Tim,

I have had a bunch of tests done. And they are negative as you said. 

It looks like most people who went CT wouldn't recover for a long time. My biggest mistake was going down 25 % at the beginning and it seemed to upset my NS. But it's been over a year since then.

 

[FindRest]

Are you by chance cutting or crushing a tablet? If so, even if it was XR to begin with, it becomes IR when cut/crushed meaning you have to take half your dose twice a day, 12 hours apart. Otherwise, you’d be putting your body into withdrawals every single day.

[Kostas]

Hi again ,

Since I have a personal experience in this ...jelly feet feeling, a short story. 

When I had medically checked my muscles and been cleared, whenever I was feeling my legs like this, I was trying to ignore it and continue with my daily activities. 

Once, sitting in a Cafe waiting for my car to be serviced, I had  to walk 2 km to go to the shop to collect it .

 

Standing up and trying to walk felt the weakness in my muscle feet. 

I decided to ignore it and going on .

 

The first 200 meters were difficult and was panicked.

Then gradually the feeling was fading away, and in the first km I was a normal walking person!

 

I walked the full 2 km ,collect the car ,left it in my garage, and walked back another km to the Cafe to enjoy an extra ice cream!

 

 Gradually draw more confidence from these efforts, and eventually this dreadful feeling, gone .

Best regards. 

[CashmereCat]

22 hours ago, FindRest said:

Are you by chance cutting or crushing a tablet? If so, even if it was XR to begin with, it becomes IR when cut/crushed meaning you have to take half your dose twice a day, 12 hours apart. Otherwise, you’d be putting your body into withdrawals every single day.

No, I have tiny little pellets in my Effexor XR and I just count them and split into gel capsules. 

[CashmereCat]

@KostasThanks for sharing your story. I can relate to that. 

I do go for walks but they just feel more like some form of torture than pleasure. I struggle to keep balance and not fall. Also I put too much effort into it and I am so tense that my knees hurt from walking. It feels like  it's not possible to be that way. It would be funny if it were not so frustrating !

 

[CashmereCat]

Hello it has been 2 weeks since I posted. Unfortunately nothing has changed for me. 
Another week will make it 10months since my last taper. It’s been 16 months and I barely tapered 30% off my original dose of 150mg. Why do I feel that awful? 
My dizziness has been debilitating, my balance has not improved at all. I tried some vestibular exercises and they made me dizzier than ever. 
I can’t see any light at the end of the tunnel! 
 

[Greatful]

@CashmereCat  I am so sorry it is taking so long to stabilize.  I wish I could  say when it will get better.  I am also waiting. 

 

 Are you getting sleep?  Is the dizziness the worst of your symptoms?  At the beginning you talk about your head feeling empty and a brick flopping around, I have that to.  The dizziness seems to run parallel to what I call a bowing ball crashing around.  

 

My new saying is I made it through yesterday, I can make it through today, and I will let tomorrow take care of tomorrow😊

If you have any suggestions that have been working for you, please share.

 

I know acceptance is also a big topic on here.  I am trying to learn this.  Not easy but as people can attest to it, it does work.  mia1 has some really good advice on this topic.  She is truly an inspiration.  

 

Do you meditate?  I have a really good guided meditation I can send your way

 

Keep posting and sharing how you are doing.😊

[mstimc]

Cashmere, just to add to Greatful's excellent post, I can assure you recovery is possible no matter how you feel right now.  In my experience dealing with lots of fellow sufferers who have had truly awful symptoms (myself included), they do fade, sometimes with frustrating gradualism, but they do fade.  Greatful's tips on acceptance and meditation are useful coping and recovery tools.  Each day really is a day closer to recovery!

[CashmereCat]

@GreatfulMy symptoms are slightly different every day. Some days it’s all in my head - feeling faint, blurred vision, DR, “brick rolling” . Some days my legs are worse than my head. It seems like I can’t control them and I walk like a drunk. Still can’t decide which days I hate more 🙂
I guess that’s a good sign if your symptoms change all the time. 

[CashmereCat]

@mstimcMeditation does not come easily for me but I ll try. Acceptance is even harder😒. I have been watching the Olympics. Amazing what humans can do! 
But it does make me feel worse about myself . Here I am and can barely walk! Spend half of every day in bed. 

[Momiki]

Hi CashmereCat,

 

I can relate to the dizziness and the frustration of not being able to do normal physical activities. Twelve days ago I suddenly became very dizzy. I was unable to walk in a straight line, and was holding out my arms to catch myself on the walls in case I would fall sideways. Luckily it became less severe after about two hours, but I remained feeling dizzy for a week. Things seem to be okay again now, dizziness wise. Along with the dizziness also came shooting pains in my legs, as well as fatigue and a lack of stamina. Less than a month ago I walked 18 kilometers just fine. Now I have trouble with my daily 30 min lunch walk. Though not severe, there's usually pain in random places, and I'm beat when I get home. Luckily, I also see some improvements there the last few days. It's nowhere near the time scale you are at, but perhaps knowing that others have similar symptoms and knowing there was improvement will help a bit. Hang in there, I hope you will feel better soon.

 

[CashmereCat]

Thank you @Jolene for your kind words. I am glad you are feeling better as to me dizziness is the worst of all the symptoms. 
And I am impressed that you can walk 18km! Not something I could do even in my better shape 🙂

[mstimc]

On 7/24/2021 at 1:16 AM, CashmereCat said:

Meditation does not come easily for me but I ll try

Even if you can distract your negative thoughts for just a few seconds at a time, that's a victory.  Any break in the ruminations weakens their grip. 

[Greatful]

@CashmereCat  My heart goes out to you.  I am encouraged by your determination to keep going.  You are stronger than you think☺️

Here is the Guided meditation.  Don't let the tile discourage you  Healing chronic pain.  Pain comes in all forms not just physical.  I use this for depression, anxiety and neg thoughts.  I think it is worth a try for you.  They do recommend headphones but it is not necessary.  I think it just blocks out noise that might distract you.

 

 

[Yersinia]

On 7/24/2021 at 4:16 AM, CashmereCat said:

. I have been watching the Olympics. Amazing what humans can do! 
But it does make me feel worse about myself . Here I am and can barely walk! Spend half of every day in bed. 

Hi. Please go easy on yourself… the neurological consequences of ADs are profound (and none of us were informed of the extensive changes that would occur before we started taking them).  Your CNS has been altered extensively - with time, it will heal.  Your trouble with walking is not due to weakness or lack of willpower - it’s due to your altered brain. Please allow yourself to rest and enjoy the Olympics without beating yourself up about your physical WD symptoms.   They aren’t your fault.

[mstimc]

@Yersinia is so right, Cashmere!  When I was in the depths of WD, I was jealous of others who seemed to be improving more quickly or coping better.  You will heal in your own time and in your own way.  Be good to yourself!

[Greatful]

@mstimc  Thank you for admitting feeling jealous of other people and their progress and how well the are coping.  I have the same thoughts.

I was beating myself up for having these thoughts.  I know they are selfish, but you want the pain to stop.  Then when you see someone in horrible pain, panic and desperation I feel so sad for them in my heart, because we know what that feels like.😰

 

@CashmereCat know how you feel when you see something that reminds you of what is going on with you and what you are missing out on.  Human nature to feel sad I guess.  I watched my neighbors pack up the trailer to go somewhere and felt a  sadness.  My husband and I like to travel and use to camp a lot.  I was  sad and wonder if I will ever be able to do those things again. (found out later they are on a  2 week trip out west).  That is why we really need the support of those that are going through this (awful) journey.  That it is okay to have these feelings and to be reassured that you will get back to enjoying things again. 

 

Everyone says it is time, time , time,   I guess we need patience, patience, patience!

[CashmereCat]

@Yersinia, @mstimc @GreatfulYes, jealousy is what I feel every day. I am jealous not just of the Olympic athletes (they are superhuman) but even some innocent dog walkers who might be 70 years old. But they still walk better than me😀.

Better practice some patience!

[mstimc]

Jealously is just another way our anxious minds mess with us.  Its another way of saying "there's something wrong with you compared to everyone else."  Which of course isn't true.  We all have a bit of jealously, of not being tall enough or rich enough or strong enough.  But they're just thoughts.  We're just fine the way we are!

[Greatful]

@mstimc  Thank you, mstimc , I need to be reminded of that a lot.  We are who we are and that is just fine.  ( of course will be happy when I gest through this and can be who I am with out W/D and medication)  But until we get there we need to accept are selves now also.

It is just our thoughts and our thoughts do not define us‼️

[Greatful]

@CashmereCat  How are you doing?

[CashmereCat]

@Greatful

Thank you for asking.

Some of my symptoms got better. But dizziness and unsteadiness are still pretty bad. Some days I get dizzy just from inhaling! Inhale and comes a dizzy wave, exhale-relief, inhale- dizzy again. How ridiculous is that?

I don't see how I can ever taper again. Next month marks a year from my last taper of 10% and I don't think I am ready to taper anytime soon.

 

 

 

[Greatful]

@CashmereCat  It is good to here some or your symptoms are getting better.  The dizziness is a crazy thing.  I get really bad dizzy spell it is hard when I get up and have to stop and wait until it passes.  These meds are pretty potent. Who would have guesses that they would have such much they remodel our brain and nervous systems. 

 

10 hours ago, CashmereCat said:

Next month marks a year from my last taper of 10% and I don't think I am ready to taper anytime soon.

 

I am so sorry it is taking this long.

You have to know that you are healing.  Everyday your brain is changing and healing

 I have something for you to read.  It is about a woman who recovered from benzos, she explains what your brain is doing to fix it's self.  Altro equates it to anyone whos brain has been affected by psychiatric drugs.    https://www.survivingantidepressants.org/topic/10914-what-is-happening-in-your-brain/   I actually printed it out.  It is nice to have on hand when you are trying to explain what is going on with you.

 

Let me know if the link doesn't open, I will send it another way.

Take care of yourself.

Remember we are here for you❤️ 

[Momiki]

Hi Cashmere,

 

I'm sorry to hear the dizziness is still pretty bad. Your comment on breathing reminded me of a book I'm reading at the moment: "Breath: The New Science of a Lost Art" by James Nestor. The author argues that many people nowadays breathe too much, leading to an excess of oxygen and not enough carbon dioxide. This happens when you take many shallow breaths through your mouth. He recommends slow breaths (6 per minute) through the nose.

 

I have no idea if this would be beneficial for you, but I thought I would share.

[Greatful]

@CashmereCat  Hi stopping by to see how you are doing?

[CashmereCat]

@Greatfulhello,

I haven't got much to report. No improvements what so ever.

The weather here is getting warmer. I am dreading the summer. The heat makes things ten times worth. We've had a couple of days when temperature reached 29C and it's only the first month of spring (Southern Hemisphere)! I hate summer and there's no escape this year. Western Australia has had hard borders for ages now. You can't even go to the other states. 

I know it's stupid but every spring I feel like I won't make it through another summer.