Autumnleaves25: New Member - In Severe inner Akathisia - up-dosed back but no relief - desperate for help

[Autumnleaves25]

Hello Everyone, 

I am extremely desperate for help and advice.  I'm a 39 year old female and been on anti-depressants for 20 years.  Over 15 years I've tried 4 times to come off, each time resulting in catastrophic outcomes involving akathisia and each increasing in severity of suffering.  I have tried to summarise my history in my signature, I am new to this site so please bare with me and currently i'm struggling to even type this. 

 

Bit of history on most recent years:  back on 1^st January 2020 I got severe Akakthisia from tapering Escitalopram to 1mg over aprox 9 months and using alcohol on New years eve  -  I was treated with Lorazepam for weeks, then I ended up on a voluntary psychiatric hospital admission but discharged myself after 3 days – but that was on the basis I agreed to take the antidepressants again.  They put me on Pregabalin (Lyrica) 300mg per day, I was taking Lorazepam 2mg and then they added Venlafaxine 75mg.

Akathisia started to calm down quite quickly once the Pregabalin and Venlafaxine were added, although it was a long road to recover and I had side effects from the drugs to deal with.

I was on the Lorazepam aprox 7 months and Pregabalin for aprox 6 months - I then tapered them over some months towards the second half of 2020.  I was terrified of becoming dependent on them (which I was) and I know this was a VERY short taper, but somehow I did that with some lasting residual symptoms which took 1-2 years to die down - mainly headaches, migraines, body aches, urination problems.  I remained on the Venlafaxine for 2 more years though at 75mg. 

 

May 2022:  Started hyperbolic taper at 5% of Venlafaxine 75 mg extended release capsules.  I counted beads and used spreadsheet, I was very sensitive to the 5% drops and struggled quite a bit, but had managed 5 tapers down to 59mg.  I held at 59mg due to move house and moving to a new area to live near parents. 

Unfortunately, I've always struggled with using alcohol on and off for anxiety and since I moved area, I was struggling - I used alcohol too much and also had to take the 'morning after pill' at end of December 2022 which has messed my hormones up so much.  I can only assume it was either the morning after pill or the alcohol, coupled with a stressful life event in March 2023 that has sent me over the edge into severe akathisia, amongst other awful withdrawal symptoms. 

I was trying to hold and hold to see if I could stabilise - but by mid July 2023 I started to up-dose back to 75mg to see if it could give me any relief.  I have been back at 75mg since 8th August.  I have been in akathisia for 5 months now and I am suicidal every moment of the day.  The agitation is horrific torture, I'm not getting much sleep at all and wake from 6am in torture everyday and cannot relax for a second.  How I have typed this today is a miricale as I feel like I'm dying - I'm typing as I'm so desperate.  I have a range of other withdrawal symptoms on top of akathisia. 

 

Doctors and my family are suggesting to try drugs to calm it down again.  I am terrified of doing this.  Please can anyone give advice on whether I should hold any longer or try to add something to get relief - my elderly parents are saying they cannot take anymore of it and that I will need to live at my own house soon.  I have no friends or support network in this new area.   The other option that people in FB groups are saying is that I need to start tapering through it as it is the only way out.  I cannot see how you can taper through this level of akathisia?  Has anyone done this?  

 

Please do not judge me on using alcohol - if I could take it back I would do it in a heartbeat.  I was in a very vulnerable position in my life with a difficult partner whom I've now separated from.  I hope you can understand I've had a very difficult life and I wish I had never drank alcohol to try to help my anxiety when I was tapering.  I have not touched a drop since 12th March 2023 and will never in my life again (I've never been a daily drinker).   I can only assume it was the alcohol or morning after pill or protracted withdrawal too as I had held at 59mg since October 2022?

 

what are my options?  I do not know how to proceed here, I am on the edge of leaving this world.  My life is in ruins, my health is in ruins, I'm losing all my hair, having problems with my gums since this happened, I cannot take much more.  

The thought of taking more drugs and becoming dependent again makes me not want to live but I can barely survive this and now I'm back at my original dose with no relief.  I wonder if this akathisia and anehonia will ever lessen or stop?  I am additionally scared of taking any other drugs in case it makes the akathisa worse, which I know can 100% happen from others experiences.  I think there is a chance Pregabalin could help again, BUT I have been warned by Dr Mark Horowitz and others that they can just stop prescribing this at any time in the UK as it is a controlled drug and they don't want to get in trouble for over-prescribing it. Plus it is a seriously dangerous drug to get stuck on.  I was beyond lucky to get off it.

 

I apologise for the length of this introductory message but I thought it was best to explain as much as I can - is this okay?  I thank anyone who has taken the time to read this. 

Best Wishes to all, 

AutumnLeaves25

[Altostrata]

Welcome, @Autumnleaves25

 

I am sorry you're going through this.

 

On 8/30/2023 at 7:24 AM, Autumnleaves25 said:

I was trying to hold and hold to see if I could stabilise - but by mid July 2023 I started to up-dose back to 75mg to see if it could give me any relief.  I have been back at 75mg since 8th August.  I have been in akathisia for 5 months now and I am suicidal every moment of the day.  The agitation is horrific torture, I'm not getting much sleep at all and wake from 6am in torture everyday and cannot relax for a second.  How I have typed this today is a miricale as I feel like I'm dying - I'm typing as I'm so desperate.  I have a range of other withdrawal symptoms on top of akathisia. 

 

Did your symptom pattern change as you updosed to 75mg? How do you feel taking 75mg as compared to when you were taking 59mg?

 

When did you last change your venlafaxine dose?

 

Are you taking any other drugs?

[Autumnleaves25]

Thank you for your reply. 
My symptoms changed a little bit when I increased the dose.  I started to feel numb inside my body and unable to cry properly.  I feel trapped in my own body and claustrophobic, my genital area is completely numb and I started to get low level tinnitus.
I also felt a lot of anger when I increased the dose, though this may have reduced slightly now. 
It is hard to say whether I feel much much worse than at 59, but the thing I don’t like is the numbness and unable to cry properly.  I think I probably do feel worse…as I feel like a walking dead person - but I am so tired after months of this, the longer it goes on the worse I feel because I’m losing strength and have lost the will to live now.  
I’m also experiencing ‘air hunger’ which I’m not sure that I was before I up-dosed.  This is a frightening symptom. 
I feel I am getting worse overtime at moment and not better, but as I say…it’s taking its toll because it’s relentless with no windows. So I’m not coping as well as I was, I’ve lost any fight I had and that is scaring me. 

The last time I changed dose was on 8th August 2023 - that’s when I reached 75mg (after starting increasing from 12th July 2023 in aprox 5% increases). 
On the first increase on 12th July, I had a small window that afternoon/evening, but after that it was the same. 
 

I am not taking any other drugs, except asthma inhaler (brown preventer inhaler). 
The only supplement I take is a high strength omega 3 fish oil.

 

However, I am waiting on an appointment with the mental health team to discuss if I should try another drug to help relieve the symptoms and suffering.  I am terrified to try another drug as 1) I don’t want to make it worse and 2) I don’t want another drug dependency with side effects and unable to get off it.   However, the suffering is unbearable currently. 
I am losing all my hair too. 
I don’t know whether another drug would help to calm it down?

Last time I had Akathisia, they used lorazepam and Pregabalin (alongside reinstating anti-depressant).  The lorazepam only acted for short periods of time and then symptoms came back severe.  It is hard to know if the Pregabalin helped - but I remember it did seem to make me calmer at first…However, Venlafaxine was re-instated within a week of the Pregabalin (and I was also taking lorazepam daily).  So it’s hard to know which drug made the difference or if it was combination of the 3.

This situation is different too because I was at lower dose of taper when it happened previously and other previous times I’ve been off the drug completely and re-instatement worked.  This time I wasn’t too far into my taper, I’ve up-dosed back and had no relief at all. 

I am frightened to try Pregabalin (Lyrica), because it is a controlled drug over here and could be refused to be prescribed at any time.  That is very very worrying because I would end up with Akathisia again and terrible withdrawal from that drug. 
I would have to speak to the mental health team to ask questions about this concern. 
 

The other option is to keep holding and holding and hoping that one day it will start to reduce.  I cannot see how a human being can tolerate this for so long though.  I think it could likely be a year minimum before I see any improvement.  I don’t know?

what are your thoughts on this?

 

I’ve had moderators from an Effexor group tell me that I need to taper through this.  But I cannot see how I can possibly do that considering the state I am in?

what are your thoughts on that?

 

I have many, many symptoms at the moment and no quality of life.  I can barely eat, sleep, I can’t be alone from my parents as I’m terrified.  I cannot relax at all in the day, I have strange sensations in my head, memory problems, cognitive problems, air hunger, headaches, gum problems and issues with my tongue, severe hair loss, I have to wear ear plugs 24/7 due to severe sensitivity to noise, sensitive to light and movement, my body jerks - especially when trying to go to sleep or rest, I have many other symptoms too. 
I am agitated all day long and in fear and terror all day. 
 

I hope you can give some advice or hope? 
please please help me. 
Thank you so much for reading this. 

Best wishes

Autumnleaves25

 

[redkite]

Evening autumn leaves,

It sounds like your really struggling. But you have found this site now so take some comfort in that please because they will help. The WD situation for everyone is frightening and many a time I have wanted to scream my head of, ripe my skin off and smash up the flat. Alcohol is a nightmare which is a shame cause I love a drink !!!!! Not had any for months. Although your elderly parents are wilting under the pressure of having you around you are at least living in a lush place. If your by the sea you could do cold water therapy? I know a family member who does it and he really struggles with depression. Its a shame the updose hasnt worked but if you have only just done it it will take time. With regard what drugs you should take it really is your call. Unless the people around you have come of anti=depressants they will not appreciate the hell that it can be. I had to updose recently as I was unable to functian at all. Be carefull of peoples opinions on FB, as although they are well meaning they may not understand properly. Message me if you need a chat. Here for you. Take care redkite

[Altostrata]

Please describe the sensation you've called "akathisia".

 

On 9/6/2023 at 12:05 AM, Autumnleaves25 said:

The last time I changed dose was on 8th August 2023 - that’s when I reached 75mg (after starting increasing from 12th July 2023 in aprox 5% increases). 
On the first increase on 12th July, I had a small window that afternoon/evening, but after that it was the same. 

 

Because your nervous system has been sensitized by withdrawal, you may be experiencing adverse drug effects from too high a dose, as well as withdrawal symptoms. What dosage resulted from the first increase in July?

 

When and what was your last increase of Effexor?

 

On 9/6/2023 at 12:05 AM, Autumnleaves25 said:

Last time I had Akathisia, they used lorazepam and Pregabalin (alongside reinstating anti-depressant).  The lorazepam only acted for short periods of time and then symptoms came back severe.

 

This was in 2020? It sounds like the dosages of lorazepam or pregabalin were too high and you got a paradoxical reaction from one or both of them.

 

On 9/6/2023 at 12:05 AM, Autumnleaves25 said:

However, Venlafaxine was re-instated within a week of the Pregabalin (and I was also taking lorazepam daily).  So it’s hard to know which drug made the difference

 

It was probably the venlafaxine reinstatement.

 

We have seen that alcohol can be very destabilizing to nervous systems sensitized by psychiatric drug withdrawal and adverse drug effects, as well as perhaps prior alcohol withdrawal syndrome. Drinking alcohol has likely set you back over and over. It appears that your drinking alcohol in March has brought on a severe setback, and the unnecessary increase to 75mg Effexor added adverse drug effects as well.

 

We are not qualified to prescribe drugs here, so we have no drug solutions. The nervous system tends to slowly calm down over time, try to stay as calm as possible to get through this.

[Autumnleaves25]

On 9/6/2023 at 5:39 PM, redkite said:

Evening autumn leaves,

It sounds like your really struggling. But you have found this site now so take some comfort in that please because they will help. The WD situation for everyone is frightening and many a time I have wanted to scream my head of, ripe my skin off and smash up the flat. Alcohol is a nightmare which is a shame cause I love a drink !!!!! Not had any for months. Although your elderly parents are wilting under the pressure of having you around you are at least living in a lush place. If your by the sea you could do cold water therapy? I know a family member who does it and he really struggles with depression. Its a shame the updose hasnt worked but if you have only just done it it will take time. With regard what drugs you should take it really is your call. Unless the people around you have come of anti=depressants they will not appreciate the hell that it can be. I had to updose recently as I was unable to functian at all. Be carefull of peoples opinions on FB, as although they are well meaning they may not understand properly. Message me if you need a chat. Here for you. Take care redkite

Thank you so so much for your kind message of support.  I appreciate it so so much.  
thank you for saying I can message you too.  It is is lonely and frightening. 
I am in such a bad way, I can’t bare to leave the house at moment. 
I’m not eating hardly as I have no appetite at all and have nausea and find it so difficult to eat.  I’m losing weight fast and losing all my hair. 
please stay in touch. 
thank you for your kindness again x

[Autumnleaves25]

On 9/7/2023 at 6:51 PM, Altostrata said:

Please describe the sensation you've called "akathisia".

 

 

What dosage resulted from the first increase in July?

 

When and what was your last increase of Effexor?

 

 

This was in 2020? It sounds like the dosages of lorazepam or pregabalin were too high and you got a paradoxical reaction from one or both of them.

 

 

The nervous system tends to slowly calm down over time, try to stay as calm as possible to get through this.

The sensation I describe as Akathisia is:  complete inner terror, fear, doom, restlessness, unable to relax at all in own skin all day long, unable to sleep in the day or nap, hyper alert, despite being exhausted, unable to sleep barely at night, constant agitation, overwhelming fear of being alone - needing to be with one of my parents at all times, fear of leaving the house, fear of everything, constant looping thoughts and continuous suicidal thoughts where I’m desperate to die. 
Some pacing, hand wringing, leg shaking, some facial movements. 
I am also having many many other physical/internal symptoms which are adverse drug affects too. 
 

The dosage was increased on 12th July to 81.5% of a 75mg capsule. 
(I increased from 77.4% of a capsule). 

 

By 8th August, I was back at 75mg.  
That last increase was from 93.3% (aprox 70mg dose back to 100% dose of a 75mg capsule on the 8th Aug). 
I have not increased the dose since then.  75mg was the dose I was always on originally. 
 

Regarding the Pregabalin - it did seem to have a calming effect, but as I said, about a week later the Effexor was added, so I’m not sure what exactly helped. It is hard to remember that time well and what happened. But I know that once the Pregabalin and Effexor were added, the Akathisia did seem to calm down. 
I was taking lorazepam too.  The lorazepam would help UNTIL it wore off - it did not sustain me.  But I had to keep taking it and try to wean off it slowly.  I weaned off Pregabalin and Lorazepam and was stable for 2 years on just the Effexor alone.  Then I started tapering the Effexor in May 2022. 
 

Do you think the best thing is to hold to wait to stabilise? This could take years? It’s going into 6 months now. How long do you think it could be? 

Also, other people have said to taper through this, but I cannot see how that would be possible.  Wouldn’t that be even more dangerous to keep tapering through severe Akathisia and the other adverse drug effects? 

 

Is the best thing to make no more changes? 
I don’t know how I can continue to live like this, the suffering is unbearable. 

my family want me to try other drugs to try to stabilise. I don’t know what is best.  I know you cannot advise on which other drugs, but I wonder if you can give opinion on whether you think it best not to add anything at all and just hold and wait? 

 

thank you for taking the time to help me. I appreciate it so so much. 
I hope I have answered your questions well enough to help you get a better picture. 
best wishes 

Autumnleaves25 
 

[redkite]

Afternoon autumn leaves, 

Very hot day here but I think it may be cooler down your way. The heat will impact on your mental health and make you feel more anxiety in general. May be go outside and sit in the cool. I know you say you feel like you cant leave the house but perhaps later when its cooler maybee at dusk you could go out and absorb a bit of nature. I often focus in on nature when I feel terrible, at the moment the garden is full of spiders and I like to watch them in there webs getting wasps!!! At dusk you may be lucky enough to see some bats. Like I said before its your call on the other drugs but it seems tapering is a bad idea, you need to stabilize. I just herd storms are on there way so thats something to look forward to for tonight at least. I do colouring in when im bad or even little pencil sketches , you need something else to concentrate on. I also keep a journal so I can write down my emotions as getting them on paper helps deal with the frustration. I also do a gratitude list at the beginning and end of the day, it helps move the automatic negative response to a more positive trajectory. Like you say feeling like this is frightening and lonely which is why I made friends with nature and all the animals!!! Try it later if you can. Also if you can read a book that helps to, just one word at a time and nice magnesium baths as well just something to distract you. Thats enough instructions I reckon !!!!    Take care Redkite.

[Altostrata]

On 9/7/2023 at 10:51 AM, Altostrata said:

 It appears that your drinking alcohol in March has brought on a severe setback, and the unnecessary increase to 75mg Effexor added adverse drug effects as well.

 

Please keep daily notes of times o’clock you take your drugs, their dosages, and your symptoms throughout the day. We need to know how you feel before and after taking each drug, and any significant symptoms in between. Post 24 hours of notes at a time in this topic, in a simple list format with time o’clock on the left and notation (symptom or drug and dosage) on the right.

[Rosetta]

AutumnLeaves,

 

I’m very sorry to hear that you are suffering so.  The way I dealt with a similar situation was to take hot baths.    A hot shower could work if you are able to stand.  Others have used cold water and found some relief.  You will need to take it moment by moment.  Do not think too far into the future.  Think of what you need to do at this moment only.  

 

I had a neck and shoulder wrap made with buckwheat that I microwaved.  I kept heating it over and over, and the warmth helped me endure.
 

When you eat, try to eat protein that will sustain you over time to avoid blood sugar spikes and troughs.  Eggs, boiled eggs, are easy and a good protein.  Stay hydrated mostly with water or drinks with only a little sugar. No artificial sweeteners.  Fruit is okay, but not fruit juice.  Cured meats are easy proteins.  No prep.  I know that misery of struggling to eat.  Peanut butter and celery is a good snack.  

 

You will not have aka for years.  Maybe not even months if you post your times of taking drugs and the symptoms as Alto has asked.  Do that — make that your one job that you take very seriously — so that she can try to sort out what is a drug side effect or adverse reaction and what is probably “just withdrawal.”  Making changes is risky, so you want to make the right changes if you make any.  By posting your times and symptoms in a chronological list, Alto can help you.  Many people do not understand the importance of this request.  They don’t force themselves to do it, and I am always sad to see that.  It can make a big difference.

 

I hope you have a few moments of calm today.

 

Rosetta
 

 

 

 

[Autumnleaves25]

Dear Rosetta and Redkite, 

 

Thank you both for your kindest messages, advice and support.  It means so much in this dark time.  I am struggling to be able to come on here to reply to everything and have been trying to keep a log of symptoms as Alto suggested.  I will now try to add some of the symptoms throughout the past few days. 

Please keep in touch on here with me, it really helps. 

 

I wish you the best in your journeys too. 

AutumnLeaves25

[Catina7]

Hi @Autumnleaves25, 

 

I'm so sorry you're suffering so much.  I've been trying to get off Effexor too, and I experienced horrible akathisia when I got down to about 12 mg.  I updosed back to 37.5 mg and have been holding here for about two years.  Sometimes I wonder if I up-dosed TOO much.  It's hard to know what to do sometimes.  My heart is with you.

 

Once the mods get a complete detailed picture of your symptoms I'm sure they'll be able to give you more specific advice.  Definitely keep daily notes for everything like they have asked.

 

Please don't give up hope that things can and will improve for you.  There are many, many people that have been as worse as you are and have gotten better with time.  Hang in there....we're all here for you!  

 

Hugs,

Catina ❤️

[Autumnleaves25]

On 9/9/2023 at 9:07 PM, Altostrata said:

 

Please keep daily notes of times o’clock you take your drugs, their dosages, and your symptoms throughout the day. We need to know how you feel before and after taking each drug, and any significant symptoms in between. Post 24 hours of notes at a time in this topic, in a simple list format with time o’clock on the left and notation (symptom or drug and dosage) on the right.

 

I will now add a few of the past days symptoms.  I do not know if this will be enough, or if you need more times throughout the day.  Please let me know once you have read them.  I will add a seperate post for each day.... below is the first day of recording:-

 

6am:  Wake in terror, fear, dread, teeth chattering, body tingling with a feeling of fear, nausea, mild headache, agitation.  I repeat words over (vocal tic) and make grunting sounds, occasional squinting and sticking tongue out (these things happen throughout the day though too)

 

8.45am: Take 75mg of Effexor (extended release capsule)

9.27am:  Take one puff of Asthma inhaler preventer inhaler called '100 Clenil Modulite'  - I am trying to reduce to one puff instead of two per day.

11am:  Continued symptoms as above of agitation, terror, unable to relax, vocal tics, no appetite - difficult to eat anything at all. Air hunger symptom, continuous suicidal thoughts and anhedonia.  The feeling of anhedonia is horrendous - feeling of being completely numb, unable to feel - feeling claustrophobic in own skin, feeling dead inside.  I have no feeling in my genital area and not able to be aroused.  My head head is falling out rapidly and I have problems with my teeth and gums. Scared to be alone, even in a different room to others.

2.30pm : Argument/stress at home - increased agitation and headache, continuous suicidal thoughts

4.40pm: Still agitated, pacing a bit here and there, can't breathe well - air hunger, random memories popping into my head from way back in the past when I'm not choosing to think of things like that - suddenly appears in my mind, unable to relax.  I try to sit down and get 'mylonic jerks'...my whole body jerks whenever I try to sit to try to relax or if I lie down.   I am having sensitivity to light and noise - wearing my noise cancelling headphones on top of earplugs - ALL DAY. continuous suicidal thoughts and anhedonia

5.30pm:  Ate dinner (fish and potatoes).  Can hear sound of my own heart beat in the my head and mild ringing in my ears - this is when I have ear plugs in.  

7pm:  Trying to relax on bed - scared to be alone, so my elderly mother lies on the bed next to me.  There is a little bit of reduction in agitation, but my body is jerking.  

9pm:  Trying to sleep - can hear and feel my heart beat/pulse in my head, body jerking, feeling very frightened still, thoughts if suicide. 

11pm: Wake up having bitten my tongue in my sleep - waking up panicked and feeling like choking

3am:  Wake up.....not as agitated, try to get back to sleep.  I sleep till 6am the net day

[Autumnleaves25]

9 minutes ago, Catina7 said:

Hi @Autumnleaves25, 

 

I'm so sorry you're suffering so much.  I've been trying to get off Effexor too, and I experienced horrible akathisia when I got down to about 12 mg.  I updosed back to 37.5 mg and have been holding here for about two years.  Sometimes I wonder if I up-dosed TOO much.  It's hard to know what to do sometimes.  My heart is with you.

 

Once the mods get a complete detailed picture of your symptoms I'm sure they'll be able to give you more specific advice.  Definitely keep daily notes for everything like they have asked.

 

Please don't give up hope that things can and will improve for you.  There are many, many people that have been as worse as you are and have gotten better with time.  Hang in there....we're all here for you!  

 

Hugs,

Catina ❤️

Thank you so so much Catlina.  At the moment, I am so severely suicidal and believe if I had an easy option to take my life and end it peacefully - I would have 1000% have done it by now.  I am so low that I feel I have no fight inside left.  I feel I cannot see how I can live going forward and my life outside of this has been destroyed and I only have my elderly parents, living in a new area where I know no-one.  I am so frightened and my hair is falling out so badly, I soon won't have much left at all.  I already have to wear hair pieces and soon I won't have enough hair to clip them in. 

Please stay in touch on here, and thank you for the warmest and kindest message.  I will try to take on board what you have said.  I am very sorry to hear you have been through Effexor withdrawal and are still stuck on it.  I wish you all the best in your own journey. 

 

Hugs, 

AutumnLeaves25

[Autumnleaves25]

Day Two of Symptom Diary:

 

12th Sept 2023

6.30am: Woke up in fear, terror, body tingling.  Anhedonia.  Tried to sleep a little longer - usually I am never able to go back to sleep.  I had a bit extra sleep, but woke up to an even more horrendous feeling inside body of fear. 

8.10am: Take 75mg of Effxexor

12.10pm: Continuous looping intrusive thoughts, fear, terror, feeling of numbness in stomach and genital area.  Constant suicidal thoughts, repetative thoughts about my hair loss - it is upsetting me so much and increasing my wish to end my life.  Feeling of being trapped and no way out.

1pm: Still the same feelings, dizzy feeling - like being on a boat inside my head - this comes and goes, mind goes blank and cannot think straight, shaking and body vibrating.  Air hunger comes and goes - helps to lie down if I get air hunger.

3.40pm: sitting/lying on bed and body is jerking, continual anhedonia  - this is all day, every day and sometimes having feelings of anger and trapped rage due to feeling trapped in body with the anhedonia.  

4.30pm:  slightly less agitation after trying to lie down and trying to do scrabble on phone to stop intrusive thoughts

6pm: Slightly hungry for first time in ages.  I mostly struggle to eat anything and have to force myself to eat which is uncomfortable and sometimes I have felt unwell after eating due to forcing myself

7pm: Continual anhedonia and numb and trapped feeling.

10pm: Problems getting to sleep, mental fear, weird thoughts in head, fear of being alone so my mother lies next to me to try to help me get off to sleep. I have a headache too. 

2am:  Wake up, less agitated but still scared and anhedonia.  Go back to sleep shortly afterwards. 

 

Please note:  There are some evenings I am slightly calmer, but i've had some evenings where I am extremely agitated still.  However, the overall pattern seems to be that evenings usually are slightly better. 

[Autumnleaves25]

Day 3 of Symptom Diary - 13th Sept 2023

 

6.30am: Wake up - head feels like it is spinning inside, nausea, feeling of anxiety and fear in my stomach.  Mild headache, Exhausted and need more sleep but cannot get back to sleep (feel like that everyday).  Jaw Clenching  (I clench my jaw in sleep and throughout the day).  I believe I am grinding my teeth in my sleep.  Additionally, I find it very difficult to breathe through my nose in the day and at night to sleep - I notice I am not breathing correctly anymore and have constant dry mouth - which might be the reason my gums have started bleeding and I have issue with my tongue.  This is a continuous problem I am having with breathing.

constant Suicidal thoughts, anhedonia, shaky body

 

1.30pm: Shaky, headache, fear, terror, suicidal thoughts, unease in body, unable to be alone or to relax.  Feel trapped in body, - feel claustrophobic, numb feeling in whole body

2-3pm: anhedonia, SI, agitation, can hear heartbeat/pulse in my head, wishing to die peacefully

 

7pm: feeling trapped, anger and numbness, anhedonia, SI thoughts, body jerking when trying to sit to relax

 

10pm: Trouble getting to sleep due to body jerking, weird random thoughts in head, pulsating feeling of heartbeat in my head, feelings of fear

 

[Autumnleaves25]

Day 4 of Symptom Diary - 14th Sept 2023

 

6am: wake up in fear and terror, suicidal, anhedonia, agitation, some pacing.  I pace in the mornings -sometimes for short periods.  my hand shakes and leg shakes,  body shakes and vibrations. 

8.30am: Take 75mg of Effexor

9.30am: Trapped feeling - anger/rage feeling trapped inside body, feelings of numbness and claustrophobia, severe depression

 

11am:  Continued agitation, anhedonia, SI

3pm: Random memories and sugar cravings (only recently started the sugar cravings - used to have this all the time when stable on the 75mg) Noticed last few days random sugar cravings and occasional feeling of being hungry - have not been hungry for weeks.

 

6pm: Ate dinner, pasta with chicken and veg and cheese

 

7pm: Strange bowel movement - with very uncomfortable stomach.  Not eaten anything different to usual.

 

8pm: Lying down trying to relax  - body jerking and anhedonia

 

10,30pm: Difficulty sleeping due to feelings of fear and jerking movements, also weird thoughts in head and SI

 

[Autumnleaves25]

On 9/9/2023 at 9:07 PM, Altostrata said:

 

Please keep daily notes of times o’clock you take your drugs, their dosages, and your symptoms throughout the day. We need to know how you feel before and after taking each drug, and any significant symptoms in between. Post 24 hours of notes at a time in this topic, in a simple list format with time o’clock on the left and notation (symptom or drug and dosage) on the right.

 

I have completed 4 days of symptoms so far.  Please let me know if you feel I need to provide more. 

I would like to state that I have missed a period - it was due around the 25th-29th of August.  I still have not had it, although I had some symptoms around that time that felt like it would come. 

 

My history is that I was diagnosed with PCOS and put on birth control pill to 'regulate my periods'.  However I came off the pill and my periods were 'irregular' by normal standards - for about 1.5 years my periods would be 8 weeks apart or 5 weeks, or 6 weeks - I never knew when they would come but I was happy they were at least coming that frequently.  a BIG thing that might be linked to this akathisa episode is that I took 'the morning after pill' on 23rd December 2022 - 3 months before the Akathisia hit at end of March 2023.  Since I took that 'morning after pill' my periods were almost like clockwork each month for this whole year so far - up until NOW.   Whenever it was leading up to my period my akathisia seemed to get even worse.  I believe this pill and my hormones, coupled with the alcohol could be the reason for this akathisia.

 

Since I increased back to 75mg - the feelings of anhedonia happened - this feeling of being trapped in my own body and unable to feel anything, unable to cry properly, ,unable to feel love.  This seemed to start as I was up-dosing back to 75mg, additionally, the tinnitus issues seemed to be more prevalent and the air hunger started in the weeks after updosing. 

 

When in the past I have re-instated, things have got better.  I now seem to be trapped on this drug with no way out and continuous suffering.

Some people tell me to taper though this - I do not know if this is what I should do and I don't know how my family could get through it too.  My parents are not coping. 

I am due to see the mental health team about other drug options next week but I don't know if I can bring myself to take any more poison. 

Does anyone ever stabilise from this by just holding?  

 

and also, how will I ever be free of this drug in the future? I do not have a support network to help me as I moved to a new area November 2022, I was due to build a new life here and now I have a new house that I cannot live in and have to pay the bills for.  My only family is my parents who are old and have their own health problems. 

 

[Autumnleaves25]

Also, can anyone tell me if the Anhedonia will stop if I stabilise?  Will I ever be able to feel anything again?  i see people who it doesn't seem to go away for.  

[Altostrata]

8 hours ago, Autumnleaves25 said:

Also, can anyone tell me if the Anhedonia will stop if I stabilise?  Will I ever be able to feel anything again?  i see people who it doesn't seem to go away for.  

 

Anhedonia is a common adverse effect of antidepressants. As you observed, it became more prominent when you updosed to 75mg Effexor. It appears you are also suffering increased tinnitus and air hunger as adverse effects.

 

As noted earlier, the increase in Effexor dosage may have been unnecessary.

 

Do you every forget to take doses, or take them off-schedule?

 

Are you using the inhaler for the air hunger?

 

Do you feel better or worse after you take Effexor, compared to before? Do you feel better or worse on 75mg than you did in October on 59mg, prior to alcohol, etc.?

 

 

[Autumnleaves25]

14 hours ago, Altostrata said:

 

Anhedonia is a common adverse effect of antidepressants. As you observed, it became more prominent when you updosed to 75mg Effexor. It appears you are also suffering increased tinnitus and air hunger as adverse effects.

 

As noted earlier, the increase in Effexor dosage may have been unnecessary.

 

Do you every forget to take doses, or take them off-schedule?

 

Are you using the inhaler for the air hunger?

 

Do you feel better or worse after you take Effexor, compared to before? Do you feel better or worse on 75mg than you did in October on 59mg, prior to alcohol, etc.?

 

 

 

Thank you Altostrata for this reply.   In reply to your questions:-

 

Do you every forget to take doses, or take them off-schedule? : 

Over 20 years of taking anti-depressants I have forgotten to take doses here and there, but I am mostly on top of it.  With Effexor, when I was 'stable' on the 75mg, I would feel the effects of missing a dose usually later in the day and then I would realise what I had done.  Currently, I am so traumatised by this experience, that I put my capsules into a Mon-Sun Pill box and take around the same time each day at about 8am.  I double check and triple check I've taken it and have an alarm on my phone that goes off everyday at 10.30am to remind me to ask myself if I have taken the drug.  So currently, I am taking them on schedule.

 

Are you using the inhaler for the air hunger?:  I do not use the inhaler for air hunger.  The doctors prescribed the asthma inhaler a couple of years ago when I was struggling with wheezing at night.  There is a question mark over whether I have asthma or not.  When I am stable on the drug, I get sneezing, and allergy symptoms all year round.  I have found that when I am tapering or in akathisia I do not have allergy symptoms - even now when taking the drug, I do not have them,  but I have had for years and years whenever 'stable' on an anti-depressant.  They believed the asthma symptoms were related to the allergy symptoms.  I had reduced the inhaler from 4 puffs a day to two and now trying on one puff a day.  I do not use the blue 'reliever' inhaler at all. 

 

Do you feel better or worse after you take Effexor, compared to before? Do you feel better or worse on 75mg than you did in October on 59mg, prior to alcohol, etc.? :   I currently feel much worse because I am de-stabilised, suffering akathisia and anhedonia and other adverse effects.   

When I was on 59mg in October and into the new year before I destabilsied - I felt MUCH better than I do now.  I felt I was stable 'enough' at that dose, although still struggling with life stuff and also looking back I feel my behavior was being affected and I was taking risks/being impulsive and not thinking straight - I now believe that this was partly due to the drug and tapering.  I was however, able to function, feel a range of normal emotions, sleep enough, relax in my own skin, see friends, move house, etc.   I had hope for the future that I would get off the drug and build my new life in new area. 

 

Now since March, I am basically mentally disabled and barely able to leave the house.  I bought a new home just before it hit and now cannot live there.  I am terrified of being alone - and need to be with my parents all the time.  All I want is to take my life.  All my hair is falling out at an alarming rate - I've lost so much hair before on last taper that I have to wear clip in hair piece.  Now it seems, my hair pieces may no longer work soon and I may need to shave my head.  I am a 39 year old woman and I'm losing every part of myself, cannot look after myself and am in a new area, isolated where I know no-one and my elderly parents are struggling to cope with me.  If they get ill or pass away, I will have no-one in this life as my brother lives abroad.   Over 20 years these drugs have continued to ruin my life - being trying to get off for 15 years, I feel I am at the end of this fight,  I feel like I have nothing left to give.  I cannot seem to find the will to live anymore and that is the most terrifying thing - that I feel completely ready to die and if someone could put me to sleep now, I would 1000% take that opportunity.  I am so sorry to say these things.  I've never been so ready to go in my life before.  I cannot see a way off this vile poison.  

 

Can you tell me if you think I should try to taper through this?  I see another person doing this on an Effexor and Akathisia group and he is in similar position to me.  The tapering sounds horrific and he is now having physical pain too, but at least he is getting off the drug.  Am I more likely to heal if I get off the drug?

 

Do you think I am having paradoxical reaction to the drug now? 

 

Do you think if I hold and do not taper, then the anhedonia and akathisia may stop?   

 

Thank you for your help, the work you do, the time and effort you take to help others.  What you are doing is incredible and a lifeline.  Thank you from the bottom of my heart. 

 

Best wishes

AutumnLeaves25

[Altostrata]

As noted before, your current symptom pattern may be a result of your alcohol use in March and adverse drug effects due to increase of your Effexor dosage to 75mg. A careful reduction in dosage may reduce the adverse effects.

 

There is a possibility your symptoms are not drug-related. Have you had any test recently for PCOS or other endocrinological issues?

[Autumnleaves25]

18 hours ago, Altostrata said:

As noted before, your current symptom pattern may be a result of your alcohol use in March and adverse drug effects due to increase of your Effexor dosage to 75mg. A careful reduction in dosage may reduce the adverse effects.

 

There is a possibility your symptoms are not drug-related. Have you had any test recently for PCOS or other endocrinological issues?

 
When you say a careful taper….what rate would you suggest? Less than 5%?

 

If I tried to swap to a liquid version of Effexor from the extended release capsules, would this be likely to make everything do much worse? I find counting the beads very difficult. 
Because of what happened to me, I started counting each capsule fully and working out the percentage dose for each capsule as the amount of beads ranged from 220 to 275 for a 75mg capsule.  So it is very difficult to know the correct dose when removing beads. This is why I as conserving to switch to a liquid version if I decided to taper.  I believe liquid would be immediate release, whereas the capsules are extended release. 
 

Can I ask though, is it likely to make my Akathisia so much worse if I try tapering through this?  I will likely get even more withdrawal symptoms on top too? 
 

I do believe the cause of this Akathisia is due to destabilisation on a taper from this drug.  The destabilisation may have been caused by alcohol or hormonal issues or both. 
But it is because I’m tapering. 
I have only ever had these issues when tapering antidepressant. 
 

I have not had my hormones checked.  When I speak to the doctor next I can tell her I have missed a period. 

The NHS in the UK is unlikely to help me very quickly to look into anything like that currently though. 
 

My concern is, do I taper or do I continue to hold. 
 

The last couple of days my agitation has subsided a tiny bit and I have more appetite. 
But things are still very bad overall.

 

Do some people taper through this level of torture and get off the drugs even in such a horrific state? This will take years of inhumane suffering? 
 

[Catina7]

Did your akathisia get worse when you started updosing back up to 75 mg or has it stayed pretty much the same?  

 

I can relate to your situation with not knowing whether to keep holding or trying to taper.  What was told to me was that at some point I may want to "test the waters," so to speak, with trying a very small reduction to see how I respond....something like 2.5%.  I've been holding for two years though.

 

If your akathisia got worse after you updosed, you may be dealing with an adverse reaction, and therefore a reduction of the drug may actually relieve some of your symptoms, as Altostrata previously mentioned.  

 

It's good to hear your agitation calmed down a little bit.  Celebrate the little victories, no matter how small.  You could try holding longer to see if there is any more improvement, but if that doesn't offer relief then you may want to test the waters ever-so-slightly.  Please keep in mind that this is just my personal opinion based on what I've learned on the site.  I know when Altostrata gets a chance she will address your questions as well, but I just thought I'd respond and try to help a bit since I'm in a similar situation. 

[Altostrata]

5 hours ago, Autumnleaves25 said:

My concern is, do I taper or do I continue to hold. 

 

If you want to continue having adverse effects from 75mg plus the akathisia from your earlier drug changes, do not reduce the Effexor dose. If you want to reduce the adverse effects from 75mg Effexor, reduce the dose.

 

You could reduce by 5% or 10%, your choice. You can also decide on the reduction method. Or, you could not make any dosage changes. It does not appear that 75mg Effexor is doing any good for the pre-existing akathisia, plus it's adding its own adverse effects. But if you want to stick with it, up to you.