Londoner: any help would be much appreciated

[Rosetta]

Yes.  Yes and yes.  It is normal to be incapable of seeing out just as you describe.  Absolutely.  
 

Your situation does not compare to mine because I had a kindling issue going on for months and months after I quit ADs and Xanax in the month of December.  I believed I had avoided Xanax dependency.  It was easy to quit.  I felt very good for a couple of weeks afterward.   Then, due to insomnia, I was prescribed Trazodone.  I found SA about 5 or 6 months after I quit Trazodone.  I had quit T in the month of February.  It took me ages to understand the information here.  My brain did not work and nothing made sense to me.  I had a glass of wine with dinner, or a cocktail at a party, sometimes without understanding that alcohol would drive my body deeper and deeper into dysautonomia (withdrawal syndrome.)  So, having my worst month be November makes sense if I was kindling my system with alcohol — even just one glass of wine with a meal once a month can kindle a sensitive nervous system.  There is no need to be intoxicated or tipsy — the simple act of drink the glass will upset the nervous system more.

[Rhiannon]

5 hours ago, Londoner said:

 

This is what's so scary about this syndrome. When I'm in the depths of it, I simply can't see out. I don't know if others have an easier time of 'seeing out' of the fog but for me, in the last 3 months, I have proved time and time again that I am incapable of reasoning with my withdrawal brain. My only option seems to be to cling on and try to prevent suicide. I will need it for tomorrow.

 

Does it get easier to 'see out' of a wave as time goes on? Is it normal to be incapable of it to this extent?

 

This is very normal in withdrawal. Very common phenom actually. When you're in it, it feels just like it's a true fact that "you have never felt good, you will never feel good, this is all you will get forever."  You literally can't remember a different reality. It's like this black hole that sucks up all the light and you can't see out of it when you're in it.

 

But it always passes, at first not for as long or as often as we would like, but as time and healing goes along you get more and more time out of the hole until being out of the hole becomes the normal and being in it is the exception.

 

It's actually just another symptom of WD, another neuro-emotion if you will, but it's super frustrating and scary and weird because your brain is just convinced that it's true! Until it's not, and then you can see it.

 

The only suggestion I have is to keep journaling, like here in your thread or elsewhere, so that maybe you will see that sometimes you actually said, yourself, that things were better. And keep reaching out for support and sharing. You are not alone. You are doing exactly what needs to be done. Cling on. Hang on by your fingernails. Stay alive. Hang. In. There. It will be worth it.

[Vonnegutjunky]

Londoner, sorry it took me so long to reply. I’ve been so busy and the stress really affects me. 
 

there is no pill to heal your brain. 
 

your brain is healing and the changes in your symptoms  are exactly how mine were. Your windows get longer, and longer. For me the waves only easier, that’s the hard part. But your windows getting longer are the key. 
 

this will continue for the next 2 years as you keep healing. Don’t sabotage this healing by trying meds or supplements. 
 

I am now able to take fish oil and vitamin d. 
 

before I couldn’t. 
 

I used Benadryl in emergency situations early on, others have done this too with bad results. So be leery of trying this. It only helped for about 2 hours and it never made the aka go away. 
 

keep pushing, use your spirituality or faith right now and just distract yourself. Normally I wouldn’t say that because in a he always brain meditation  and mindfulness can be helpful, but not where you are right now. That probably won’t help. 
 

eat your favorite foods. Get enjoyment out of food that you love, that can help distract….listen to tv shows that play laugh tracks in the background, color, do puzzles, play silly video games, or watch small videos on YouTube. All day every day all I did was watch some guy put doll houses together. They weren’t very long so I could pay attention. I also watched asmr videos of a lady folding towles very gently, that helped a lot. 
 

and reading success stories on here - I did that for hours and hours. Read success stories please, they help give you hope. 

[Londoner]

Thanks so much for all of your posts and advice. I can't tell you how much it means to me. I am really being pummelled and I have a lot of fear that this just isn't possible for me. Even if I don't respond, please know how much your words of encouragement and reassurance mean to me.

[Altostrata]

If you look at our Success Stories, and then go back and read the associated Introductions topics, you'll see many people posting about their worries they will never recover. 

[Londoner]

Does anyone have a contact address for Stuart Shipko? I am desperate and on the verge of dying

[manymoretodays]

Hi Londoner,

On 7/12/2021 at 12:43 AM, Londoner said:

Does anyone have a contact address for Stuart Shipko? I am desperate and on the verge of dying

My understanding is that Dr. Shipko has retired from practice.

I don't know if you follow the MadInAmerica site much, there is even a UK version.

I'll link you up to the US site map:  https://www.madinamerica.com/sitemap/

If you scroll down you'll find a link to the UK version, as well as a provider directory.

 

Happy to hold your hand, whenever.   Sounds awful.  Are you pacing non-stop or is it just the constant obsessive thinking going on.  How's your support system on the ground?   Any practical, loving kind support that you can find will be invaluable, and sometimes we find that in ourselves as well.  That quiet still voice that says, "keep going, keep trying, I'm here for you, you can get through this, and anything now".

Eat, sleep, distract, change the channel, and just frankly........hang on!

 

And just in case there is something here that resonates:
For those who are feeling desperate or suicidal

The first post there is well worth a read, and then you might find what's been gathered up for the UK.  I've heard the Good Samaritans are great listeners.  No experience using myself, as I'm a master at coping now.  Working on building up my own life too, at this time.

 

Okay, and best.  Pulling for you.......to ride it out.  It's well worth it to do so.

 

Love, peace, healing, and growth,

mmt

[Rosetta]

Hi, Londoner.  You are not alone, although I have been dealing with my own stuff recently, and I didn’t see your post two days ago.  What’s going on?

[Londoner]

Thanks @manymoretodays and @Rosetta. Your support means so much to me.

I don't pace that much but a bit when distressed. It doesn't help at all because the vast majority is mental torment. Appalling mental torment. I am very frightened because the last two months in particular I have had very intense suicidal urges. Not just thoughts. Baylissa Fredericks is helping me but I feel certain that this withdrawal is going to take my life. I have SI/urges pretty much everyday. It's so difficult because I find it near impossible to distract from. 

Tomorrow is my 10 months off. I don't know what to do. I know there is nothing that can help me (meds/ECT) but that just adds to my sense that death is the only way.

I thought perhaps that Dr Shipko may have some experience with people in my situation and be able to offer some advice. I have briefly emailed with David Healy. He suggested red wine and exercise for akathisia. Exercise is out when I am in that much distress and when I am not, I have a lot of fatigue and over exertion worsens my symptoms. I'm not sure about the red wine either.

I have been reading threads desperately searching for answers. @Carmie and @Fresh both had suicidal akathisia and were helped by medication/hospital stays. I am desperate but also terrified to even try anything.

I keep reading Rosetta's thread because my symptoms are similar and it gives me hope that she survived and that her acute period lasted 4 months and then she saw some improvement. But I also think that her symptoms were predominantly on the anxiety side whereas my akathisia of the mind is very much on the hopelessness/depression and intense suicidal. How am I going to survive? Rosetta, were your suicidal thoughts overwhelming or were you able to access some reason whilst you were experiencing them? I am in agony a lot of the time.

[Rosetta]

The SI was extremely intense for me.  Aka would build up and build up, then peak, and slowly recede.  This happened over and over.  It was very difficult to live through, but I refused to give up, I suppose.  I lived in fear of the next episode, and I felt despondent at the thought of the condition happening over and over.  Eventually, aka lessened in frequency, intensity and duration.  It continued to lessen more and more until it became so infrequent that I felt hope for its disappearance.  It almost never happens now, and it’s tolerable.  It will disappear, Londoner.  You have to outlive it.

 

I do not like the idea of drinking red wine.  Alcohol kindles the nervous system.  My experience was that an occasional glass of white wine seemed to prolong paws for me.  Granted, it was not red wine, and it was a wine glass full.  Perhaps there is a reason Healy recommends red.  I know doctors prescribe benzos for aka.  Alcohol has a similar effect.  If you try it, drink only two or three sips, not a whole glass.  However, do you think you are having aka WHEN you feel SI?  Or do you think that after the aka peaks you feel deeply depressed?  (Or both.)

 

Definitely, I would not drink red wine if SI is occurring after aka has peaked and you are feeling depressed.  After each time aka peaked, I fell into a deep emotional trough.  I had been drained.  At times, during this “hangover” type of reaction, I felt so hopeless, but the SI was of a different sort.  It wasn’t the “jump off the 10th floor to escape the building on fire” type of SI.  It was the depression, hopelessness, “I can’t go through that again” type.  I feel that any alcohol at that time would a big mistake.  The purpose of the sedative effect of either benzos or alcohol is to calm the system in acute aka.  I was not in acute aka while in the trough.  I did not need to go further “down,” and there would be no benefit to offset the risk of prolonging paws via kindling.

 

Does that make any sense?  Another problem is that you can’t drink sips of red wine every day or every time you feel you need it.  You will have to suffer through some of the aka without it.  It’s very hard to know when aka has peaked until after it has done so.  I could never tell when it would lessen, and it lessened so slightly moment by moment.  Usually, I would fall asleep at night, and it would be gone in the morning.  However, if I could not fall asleep that might have been an indication that it was not on the downhill side.
 

So, you don’t want to irritate or kindle your system with wine too often by using it every time you feel the panicky, jump out of your skin type of SI.  If you decide to follow Healy’s advice, you will have to ration the wine, both in quantity and frequency.  That may be hard to do if an entire bottle is sitting there and you feel the terror of aka.  
 

I wish I could snap my fingers and make it better for you.  Please know that you can live through this.  It feels that you can’t, but I’m proof.
 

 

[Londoner]

Thanks so much @Rosetta. That's very good advice. I'm too nervous to try the wine. You describe very accurately the type of SI I have been getting. A lot of the hopelessness and despair. It's like the first two month I had the panicky/adrenaline aka symptoms and the past two months have been the hopelessness and deep SI. It's very scary.

[Londoner]

I spoke to Dr Shipko yesterday and he outlined the medication options for akathisia. I already knew them of course; reinstatement of Sertraline or benzos. As you may have read, he is quite an advocate for benzo treatment of aka and is very pessimistic about people who just stick it out without meds.

It's sent me through a loop a bit because in my heart I know that neither reinstatement nor benzos will work for me. Sertraline stopped working for me a long time ago and benzos are too dangerous in terms of tolerance and paradoxical reactions.

The reason it is such an impossible decision is that I feel that this withdrawal will take my life and I'm so scared. Did you feel that way? If so, did you get to a point where you no longer feared for your life? I think I am in my acute right now, at least I hope this is as bad as it gets. Its a very similar timeframe as your acute and many others. Acute started at 6/ 6.5 months and today is 10 months free and I pray that it lets up soon.

[Cheeky]

Londoner I don’t have any advice for you as I’m needing it myself but I do know the pain your in. Please know your not alone in this journey and everyone dose heal eventually, you just have to hold onto that hope. When we’re feeling desperate we will try anything but sometimes nothing is the best way. Have a look at inner compass on Facebook , there’s an interview with Chris Paige that is worth watching, he has aka and has healed . @Rosetta had come along way from were she started and in an inspiration 
Just remember that being on that drug for so long then coming off it like you did is no wonder you feel the way you do and time heals . Healing will happen but unfortunately we have to go through it and there’s no quick fix. We are here to support each other because we only now what it’s like. Sending you a big hug 🫂 

[Shellbell]

@Londoner

i wanted to reach out to you just to tell you I’m thinking about you. 
I’m going through 100% of what your dealing with and it’s brutal. Akathesia and suicidal thoughts are the absolute worst nightmare. I deal with it daily then the crash into suicidal depression which is almost as bad. I’ve been reading this thread and getting hope from the responses I see from @Rosetta as well as everyone else

i pray for you and us all

[Londoner]

Hi @Shellbell,I'm so sorry to hear of your suffering. Hang in there.

Apart from the wonderful support I receive from Rosetta and this site, the thing that has helped me most is to sign up to Baylissa Fredericks website (https://baylissa.com) and utilise the withdrawal resources on there. Given that you also find counselling helpful, I would highly recommend booking a consultation with Baylissa to discuss the problems you are having. She has experienced withdrawal herself and I don't think there is anyone more skilled in understanding the difficulties we face and supporting us. She really is incredible. If you're looking for some hope, along with the success stories, you could read Baylissa's books 'With Hope in my Heart' and 'Recovery and Renewal'.

It's very encouraging that you are able to work. Please do look into the above, I really think they'll help you.

Also, if you are due to have more surgery, one of the more knowledgable posters may be able to advise you on drugs etc to avoid. Take care and take it minute by minute, hour by hour, day by day.

[Neon]

Dear @Londoner, I just wanted to drop by and tell you that I am very impressed about how you are handling things. You seem like you are really pulling through.

I am in a similar space with suicidal akathisia and I have to admit I am handling it with a lot less grace. You are an inspiration 🙂

I really hope you will feel better soon. 

We will survive this!

[Rosetta]

Londoner,

 

I’m thinking of you.  I’m also very intrigued by Dr. Shipko’s opinion about aka and benzos.  Two major, major problems with benzos is that doctors prescribe them in doses that further irritate the nervous system AND they prescribe them PRN which means “as needed.”  If one has aka they are always “needed.”  Most of the time, there is not much more direction or education about them given to a patient.
 

I assume Shipko would not do that.  When you feel you can, is there anything more you have to add?  Did he say what the dose would be?

 

I was prescribed Xanax, and I was aware it was dangerous.  I knew it was addictive.  I took far less than prescribed in dose, but I was unaware of the limits on frequency that are needed to avoid addiction.  If you try it, please know that it can take up to 4 days to clear from the system, depending on the person.  How being in WD affects this rate, I don’t know.  You need to be without the drug for a period of time in between.  **Other benzos have different time periods.** You will need to check info on the drug.  Double the maximum half life is the number you need to know.

 

Rosetta

[Londoner]

Did @Iggy131313 recover?

 

 

 

[Londoner]

@Neon and @Rosetta, so sorry I didn't see your posts till now.

Hi Neon, I've just seen your thread. So sorry you're having such a rough time. I know the feeling. Grace? That's very kind of you but believe me, my life has been grace free the past 4 months.  I guess we all just have to do what we have to do to survive.

The akathisia and restlessness are torture. I hope you find some stability soon. Feel free to contact me. Perhaps we can support each other.

 

@Rosetta, thanks so much for your insight and advice as always. I'm too scared to even consider a Benzo right now. So I'm trying to hold out. xx

[Neon]

Okay, so I am not the only one who has lost all her ability to gracefully handle this situation 🙂  

I am so sorry you are going through this too, I wouldnt wish it on anyone in the world. We will manage, we have to!

[Surviving82]

On 7/31/2021 at 11:44 AM, Londoner said:

I'm too scared to even consider a Benzo right now. So I'm trying to hold out. xx

@Londoner, hi Londoner, I used to have what I thought was aka (don't have it now, it seems to have been a side effect from starting an SSRI). I did research on what can help it, and apparently the beta blocker (ie, propranolol) is the first line of treatment. Please consider giving it a shot if you haven't already. I by no means promote beta blockers but according to what I understand, they are much safer compared to benzos. It seems like you are suffering with aka a lot for quite a while, so it may be worth at least a consideration. Sending the best wishes of healing your way!

[Camille]

Hello @Londoner, how are you ?

 

[Londoner]

For anyone who has been on the site a very long time or even when Paxil Progress was going, do the vast majority of people recover to a great extent? Why aren't there more success stories? There seem to be loads of detailed ones on Benzo Buddies but far fewer on SA and PP. A lot of the experienced people say 'everyone recovers', e.g. Baylissa, Una Corbett, Ian Singleton etc, is the on the whole true? The idea of doing this for 10 years is unimaginable

[Rosetta]

@Londoner Hi Londoner,

 

How are you doing?  I’m sorry no one answered your last question.  I wish I had seen it.  

When you don’t get an answer you can post a new message that says “Bump,” and your thread will go to the top of the list again.  Eventually, someone will click on it.

 

Another thing that helps is to write some sort of supportive message on someone else’s thread and that person (or some one who saw you wrote that post) may recognize your name when it pops up on the list.

 

I feel the everyone recovers if do not irritate the nervous system in some way.  Some people have unavoidable stressors in their lives that impede their recoveries, some people try new drugs in doses that re-injure them, and some people have emergencies such as surgeries or accidents and are given drugs that harm them.  
 

I don’t know why more people post success stories on BB than here.  I can guess.  Benzo recovery is a long road, but perhaps tapering benzos is something doctors understand, and people have more cooperation when trying to get appropriate doses?  There is far more literature for doctors regarding benzo tapering because Dr. Heather Ashton wrote a protocol.  The protocol is a bit outdated now, but it works until the low doses.  (At that point, her protocol suggests jumping off at a much higher dose than is advisable — just in case you ever take Valium again.)

 

We don’t have many doctors who believe in tapering antidepressants.  There is no manual or book about it written by a doctor.  Perhaps the successes are fewer because it takes a very long time to taper off antidepressants while struggling to get prescriptions and having various setbacks.
 

A CT, like I did, takes quite a while to heal.  I have seen many people say that not many people who are survivors want to re-live their story in order to write a success story.

 

I hope you are doing all right?

 

Rosetta

[Londoner]

Thanks so much for your lovely post and reassurance Rosetta. I'm significantly better than I was several months ago but still every day is a big struggle. As you know, I struggle badly with suicidal thoughts. It's one of my core symptoms it seems. I often go back to that wonderful post you wrote about not giving in to suicidal thoughts. It's just so incredibly hard to see through the dark depression though. I find that when I'm in that state, even reading positive things and success stories, that encourage me usually, cannot penetrate the black depths.

I know you still struggle but you have come a long way on the road to recovery. Does it all seem worth it at some point? After 3 years do the symptoms become relatively bearable? I'm at 13.5 months and the road ahead is very daunting.

Thanks again for everything.

[Overwhelmedlady]

Hi @Londoner I feel exactly what you feel. I have been off meds for almost 2 years now.It's still hell for me and I just can't think of the future.For me it's just surviving one day at a time. I have my doubts as well since in fact there are no scientific studies showing exactly how these drugs change the brain. Anyway,since you're in the UK,you have reasons to be hopeful since there are people there working hard to make this problem visible so that patients can get an adequate support from mental health services.I don't know what else to say here.I believe that Rosetta s post was more concise and detailed than mine.Hope you get through this tough times and find some additional support.

 

 

 

[ChessieCat]

On 9/15/2021 at 7:18 AM, Londoner said:

Why aren't there more success stories? There seem to be loads of detailed ones on Benzo Buddies but far fewer on SA and PP.

 

Benzo Buddies is a more social site than SA.

 

We have had other members ask the same question about why there are not many success stories.

 

Sick people don't need a doctor.

 

A sick person might need to go to the hospital.  Once a person is recovering/recovered they leave the hospital.  They don't stay in the hospital when they are recovering/recovered, and they don't return to the hospital, unless for a check up.

 

And what do they do once they are feeling improved or recovered, they get on with their lives.  The hospital visit is in the background, it is part of their history.

 

We are very fortunate that SA has members who have returned to write their success stories.  Some members have stated, when they come back, that they had forgotten about SA and one day something reminded them of it and they thought that they would drop in and give an update.

[Altostrata]

BenzoBuddies is larger and older than SA.

[Rosetta]

That is really great news that you feel significantly better than a few months ago! Wonderful.
 

Yes, you will start to be able to del hope even in the middle of a wave.  The symptoms become less severe slowly over time, so slowly that it is not posible to perceive in real time.  That is why some sort of journaling is very helpful.  You can look back and see how much you have improved over a few months.  
 

There odd outliers in term of waves that are worse than usual.  Don’t let those get you down. They make people feel that they have lost all ground, but the baseline after a hard wave is usually much better than before the wave.  You have that to look forward to.

 

Its hard when every day is a struggle.  Very hard.  As long as you do not re-injure your nervous system you should see an overall improvement, and at the three year point, yes, it is bearable if not better than bearable.  Some people feel healed completely in between their waves.

 

Hang in there!

 

Rosetta

[Rosetta]

Thinking of you, Londoner.  I hope you are ok. -Rosetta

[Sandman]

@Londoner I would like to share my suggestions here. I'm off Sertraline for almost 4 years now. From my experience I can assure you that symptoms of restlessness subside with the passage of time following the withdrawal. Yoga helps a lot to relieve the symptoms. To deal with suicidal thoughts or anxiety and depression, you may start practising mindfulness meditation. It has to be practised following the proper method to reap the benefits. It has certainly helped me.

[Lilmizz21]

@Londoner how are you? I came across your thread.

 

I suppose to give some comfort. I am fighting all of this also. 

 

I dont know if it helps but just to give comfort that someone is in your situation as sometimes it feels very lonely.

[Erin9]

On 6/17/2021 at 11:40 PM, Rhiannon said:

 

This is very normal in withdrawal. Very common phenom actually. When you're in it, it feels just like it's a true fact that "you have never felt good, you will never feel good, this is all you will get forever."  You literally can't remember a different reality. It's like this black hole that sucks up all the light and you can't see out of it when you're in it.

 

But it always passes, at first not for as long or as often as we would like, but as time and healing goes along you get more and more time out of the hole until being out of the hole becomes the normal and being in it is the exception.

 

It's actually just another symptom of WD, another neuro-emotion if you will, but it's super frustrating and scary and weird because your brain is just convinced that it's true! Until it's not, and then you can see it.

 

The only suggestion I have is to keep journaling, like here in your thread or elsewhere, so that maybe you will see that sometimes you actually said, yourself, that things were better. And keep reaching out for support and sharing. You are not alone. You are doing exactly what needs to be done. Cling on. Hang on by your fingernails. Stay alive. Hang. In. There. It will be worth it.

Came across this thread searching for help with blocked sinus and headache problems after coming off mirtazapine, stumbled across this comment. This has given me so much hope and made me feel like I'm not alone in feeling this way. Thank you