KateH: Intro

[KateH]

Thank you for allowing me to be here. I am in quite a bind but think I would be accepted and understood here. I never in my wildest dreams imagined going through this. I have been living abroad for almost a. year. I arrived in the Republic of Georgia last month needing a refill of my prescription Gabapentin 300 mg. I have been on it for 20+ years for depression, anxiety, and insomnia. Same dose, every day, 20+ years. I am 67 years old.   Georgia refused to refill the prescription so I arranged to come to Turkey for a refill. In the meantime, I began tapering as I was running low on pills. I had no idea about tapering slowly and so began to decrease by 25% every five days. By the time I was at 75 mg. I was in severe withdrawal- insomnia, agitation, anxiety, depression, pain, nausea, and dizziness. Upon arrival in Turkey, I reinstated the full dose, another mistake. I immediately slept through the night but other symptoms have become increasingly worse. Primarily, extreme somnolence and weakness, depersonalization, terror attacks, depression and anxiety, dizziness, and nausea. The symptoms are beginning to abate, albeit slowly. I intended to start a slow taper when I stabilized but I wonder when, or if, that will ever happen. I feel I have done irreparable harm to my nervous system. I have gone from being an active 67-year-old to feeling feeble and disabled. I am too ill to fly back to the States and finding knowledgeable persons in 
Turkey for help hasn't produced any results. I am willing to travel within the EU to get help. I could handle a short flight. Thanks for staying with me so far.

Looking forward to connecting and recovering. 

Edited April 25 by FireflyFyte
Updated title

[FireflyFyte]

Hi KateH,

 

Welcome to SA. Please summarize your drug history in your signature by following the instructions at How to Summarize Your Drug History in Your Signature. You may need to be on a computer to complete this.

 

1 hour ago, KateH said:

The symptoms are beginning to abate, albeit slowly.

 

This is a positive sign. I would recommend holding at your current dose to see if you can stabilize further. Making changes in doses can contribute to instability so it is important to stay consistent to allow your CNS a break.

 

Are you planning to taper once stable?

 

Thanks,

 

Firefly

[Tweed9674]

Hi!

 

First, I hope you don't blame yourself for this. Not being able to get a refill is a very difficult situation.

The way I see it, you started a taper, and it bought you precious time to get a refill before running out of meds.

It was the best you could do in these circumstances.

 

Withdrawal symptoms are no joke. Going through this while in a foreign country is no easy task. I can only imagine the pain and fears.

I don't think you made permanent damage. Recovery from this is possible and as @FireflyFyte already said, you are showing positive sign.

 

Stay strong and keep us updated!

[KateH]

Hi, Firefly and Tweed 9674,

    First, thank you both for taking the time to respond! Yes, once stabilized I will begin a much slower taper. In hopes of feeling better, I tapered down a little once, another time, upward. Both times I messed myself up further. I have not changed my dose since. Thank you for confirming. 

    I appreciate the words "It was the best you could do..." Yes, it was the best I could do and I have put the mallet away. Being a nurse for over forty years, I had no clue, and I thought I should have known better.  I am learning the hard way and good will come from this. 

    Today was even more positive signs! So, I am very grateful for every inch forward and this group. 

       

[FireflyFyte]

12 minutes ago, KateH said:

Yes, once stabilized I will begin a much slower taper.

 

When you are ready, we have information on tapering Gabapentin at Tips for tapering off Neurontin (gabapentin).

 

We also recommend tapering no more than 10% of your previous dose per month. You can read more at Why taper by 10% of my dosage?

 

15 minutes ago, KateH said:

Today was even more positive signs! So, I am very grateful for every inch forward and this group. 

 

I am glad to hear this and hope that you continue to improve.

[Catwoman73]

6 hours ago, KateH said:

I appreciate the words "It was the best you could do..." Yes, it was the best I could do and I have put the mallet away. Being a nurse for over forty years, I had no clue, and I thought I should have known better.  I am learning the hard way and good will come from this. 

       

Hi @KateH- I'm new here too, and yes, we do make the best decisions we can for ourselves at the time.  And we just weren't told the realities.  I am (was, I suppose) a respiratory therapist, and you would think after watching a million patients over last 25 years coming out of drug induced stupors in the ICU, I would have been more aware.  But there's no sense in looking back- we can only move forward.  I appreciate your positive outlook- I'm crazy optimistic that this has all happened to me for a reason, and I'm determined to figure out what that reason is!

 

Anyway- I wanted to say hello and welcome to a fellow healthcare professional.  I look forward to following your journey!

[Jaffa]

Welcome @KateH,

 

I'm 55 and it amazes me that you have been travelling around the world when hit with this withdrawal. Beyond my comprehension how you can do that. Amazing! I'm guessing you must be a free spirit. I hope you continue to stabilise and that your situation improves really soon.

[KateH]

Hi Jaffa,

     Thank you for your kind words. Yes, travel in one's later years is challenging, let alone going through Gab withdrawal. We are one year into a two-year trip. Fortunately, we have a three-month visa in Turkey where I can hunker down and sleep! Making a trans-Atlantic flight is not feasible at this time. One of the most difficult aspects of this has been the loneliness and isolation.

     On the other hand, my nervous system can't handle any stress, so staying home and sleeping has been therapeutic! I had my hopes up the other day when I found an addiction psychiatrist in Istanbul who I thought knew about withdrawal who sent me home with fifty tabs of Valium. I have given up on trying to find help here. This website has been the most beneficial thus far. Thanks again for reaching out. I don't feel so alone here. I am grateful. 

[KateH]

On 4/26/2024 at 1:14 AM, Catwoman73 said:

Hi @KateH- I'm new here too, and yes, we do make the best decisions we can for ourselves at the time.  And we just weren't told the realities.  I am (was, I suppose) a respiratory therapist, and you would think after watching a million patients over last 25 years coming out of drug induced stupors in the ICU, I would have been more aware.  But there's no sense in looking back- we can only move forward.  I appreciate your positive outlook- I'm crazy optimistic that this has all happened to me for a reason, and I'm determined to figure out what that reason is!

 

Anyway- I wanted to say hello and welcome to a fellow healthcare professional.  I look forward to following your journey!

 

Hello Catwoman73, 

    So nice to hear from a fellow healthcare worker! Thank you for sharing your experience as an RT and a similar path of being unaware of the devastating effects of withdrawal. You are so right, there is no use in looking back but can only move forward. What are the things that have helped you the most in moving forward? Are you retired from RT? 

[Catwoman73]

6 hours ago, KateH said:

 

Hello Catwoman73, 

    So nice to hear from a fellow healthcare worker! Thank you for sharing your experience as an RT and a similar path of being unaware of the devastating effects of withdrawal. You are so right, there is no use in looking back but can only move forward. What are the things that have helped you the most in moving forward? Are you retired from RT? 

Hi Kate- I'm actually on disability.  I developed long covid, and can no longer work.  Having loads of fun trying to taper escitalopram, deal with long covid symptoms, and updose low dose naltrexone all at the same time lol.  It's a confusing mess, but I'm just moving slowly, and rolling with the punches.

 

I wish I could tell you exactly what has helped me to move forward.  It has been a slow process.  I think getting long covid was a huge factor- it has lead to a real identity crisis!  I think those of us working in healthcare tend to really draw our identity from our careers, and when I lost that, I had a lot of depression and anxiety.  I think that lead me to understand that these pills are garbage, and may have helped me for a short minute, but they weren't doing anything anymore.  Then I started wondering who I was without the pills... that led to more depression and anxiety.  Eventually I got mad- I've been on these damned things for most of the last 30 years, and I don't know who I am anymore!  After the anger came a sense of determination- to get off the pills, learn to experience normal human emotions in a healthy way, deal with past traumas, and learn to live in the moment, rather than ruminating about the past, and worrying about the future.  It's still a work in progress lol- I have some really bad days.  Being on disability has really helped though- taking time to just concentrate on my own wellness is helpful.  And I think the other major factor is my therapist.  I've had therapists in the past, but I still kept a LOT hidden.  I guess I wasn't ready to deal with much of the trauma from my past.  Well, brutal honesty with her and myself has been very important.  Despite all the crazy things happening in my body, I have felt this tremendous sense of calm since I have unburdened myself, and I am truly able to take things minute by minute now.  She has helped me learn to accept and just be in the bad moments, because the bad times will pass!  My family is extremely supportive, and that has helped.  I feel so, so lucky every day.  My heart breaks for those who don't have a lot of support- it can't be easy.

 

That was long and jumbled- I hope it made some sense lol! 

 

How are you feeling?  I'm assuming you decided not to take the valium lol... that's their solution for everything- more pills! 🙄

[KateH]

Hello Catwoman73,

   I am sorry you have Long COVID in the midst of tapering Escitiopram while adjusting your LDN dosage. Do you think the LDN is helping long COVID? Long COVID sounds so much like withdrawal, you must be courageous and determined to keep going! I was able to see your record of tapering down to 10 mg. That must feel good. Have you had many withdrawal symptoms on the way or have you been successful at holding at a dose or returning to a previous dose until symptoms subsided? If you feel comfortable sharing this...

      I retired two years ago from a 40+ years nursing career and also went through an identity crisis. I would call the process I went through like grieving the loss of a loved one. I was depressed, bewildered, and did not know why I was getting up every morning. I remember asking my husband if he would retire so we could travel abroad, he said yes, and three years later here we are Turkey going through Gab withdrawal! It never ceases to amaze me what is around the next corner. 

      It sounds like you had some very distinct turning points that have/are propelling you forward in recovery and a new life without pills. You are so fortunate to have an excellent-sounding therapist! What a goldmine. Having that deep level of trust in another person who can help you unburden is priceless. You must have been ready and willing to do the hard work of therapy and I am so happy it has paid off for you. I have had numerous therapists who have helped me with unburdening. The most beneficial for me were EMDR, reparenting, and IFS. I am also in several twelve-step groups that have kept me afloat, especially since leaving the US 10 months ago. I have found out, however, that the program does not help with this issue. I have been told "Write a 4th step" and "Find a sponsee, get out of yourself..." Neither of these suggestions have been helpful. This forum is helpful. Do you have other supports you might recommend? I tried going to NA once but realized I am not an addict. I never in 20+ years increased my dose, thought about increasing it, or exhibited drug-seeking behaviors. 

     Your story was not jumbled, indeed quite the opposite. Reading your story has given me a lot of hope. That you have a sense of calm, that you can take things minute by minute, knowing the worst of times will pass. You have many gems to share. Thank you for doing that here. 

 

[Catwoman73]

Hi @KateH! 

 

I have no idea if the LDN is helping.  It's a confusing, jumbled mess at the moment.  I started having these weird gagging sensations, along with inappropriate crying over the last two days.  The problem is I'm not sure which drug is causing the problem, since I have stupidly been taking both at the same time.  Live and learn, right?  I'm moving the LDN to a different time of day to see what happens.  Time will tell. 

 

In terms of my current taper, I tapered quite fast from 20 to 10mg, knowing that I had no trouble in this range in the past.  Or at least I don't think I did- my previous taper was done generally way too fast, so I'm not sure at this point exactly when the nasty symptoms are going to kick in.  I held at 15 mg for 3 months with absolutely no problem, then dropped to 10.  I would like to drop to 9mg on Wednesday, but I need to sort out whether it's the escitalopram or the naltrexone causing my current issues before doing anything.  These setbacks are frustrating, but it's important to make slow and careful decisions to try to avoid setbacks!

 

I wholeheartedly agree with you re: EMDR and IFS!  These have been absolutely life changing for me.  I still have a ways to go, but I'm very grateful for the progress I've made so far!

 

My only other supports are a handful of Facebook groups.  And of course my husband.  He's my greatest supporter.  I know I love him so, so much, but long-standing anhedonia makes it hard for me to really 'feel' it, if that makes sense.  The drugs have been masking so much for so long.  I'm hoping that the stars align, and I'm able to get off these drugs for good and forever, and hopefully learn to experience real emotions again.  Most days I'm super optimistic, but I'm struggling a bit today.  Tomorrow is another day, right?  This too shall pass...

 

How are you feeling today?  Getting some rest?  I can't imagine traveling during this withdrawal stuff.  My familiar, comfortable surroundings have been an absolute must!!!  Where else have you traveled so far?  I so want to see more of the world, but I think an international flight might just kill me right now lol!  Maybe someday!

[KateH]

13 hours ago, Catwoman73 said:

it's important to make slow and careful decisions to try to avoid setbacks!

I learned the hard way that slow and careful is the key to getting through this! I hope that moving LDN to a different time makes a difference and you can sort out what's what. 

 

13 hours ago, Catwoman73 said:

 

I wholeheartedly agree with you re: EMDR and IFS!  These have been absolutely life changing for me.  I still have a ways to go, but I'm very grateful for the progress I've made so far!

    I have been in therapy off and on for 40+ years and these two modalities help the most. Especially the IFS (not so easy to do EMDR on my own). I read a lot of IFS books, youtube videos, and practice IFS meditations daily. However with Gab withdrawal, the inner light has gone out and it is hard for me to access parts, other than the feeling sick part. Still, I am reminded to stay curious and compassionate, as much as possible. 

      That is an interesting term, anhedonia. I have always used the word depressed, but I have looked up the word and this seems more appropriate. I wonder what the difference is? I understand the "not feeling it" part. My husband is my lifesaver through this and yet I don't have love for him, myself, or anyone! The best I can do now is appreciate everything he has done for me and tell him that, frequently. In the meantime, I am acting as if...as if the love is there. I hope it returns someday. 

      I am getting rest today and always feel better when I have some deep sleep. I would prefer to be in my home but the way we travel, we stay places for 4-6 weeks and I can settle in fairly quickly. We left the US last July and have been to Portugal, Morroco, Jordan, Cyprus, Georgia, and now Turkey. We will go to Istanbul in a few weeks, one of my favorite cities. 

       Yes, all feelings come and go. Hope this is a better day for you! 

Kate

      

    

[Tweed9674]

Hi @KateH

 

How are things going for you? Are you seeing any improvements?

[KateH]

Hello Tweed9674,

    You are so kind to ask. I am not doing so well at the moment. Extreme weakness, fatigue, and it feels like someone turned off the lights inside, I am at the bottom of a deep, dark well, with no way out. I think this is dissociation, anhedonia, and deep depression. All three of these symptoms are everyday occurrences. The only relief is when I fall into a deep sleep, I then wake up alert and like "myself" for a short while until returning to these same symptoms, over and over. I tried going out with my husband today and felt overwhelmed. Stimulation of any kind is unsettling. Most days are spent at home, in bed, in a dark quiet room. But, I need to be out in the world, at least, every now and then. I reread your earlier post, it gave me hope when I first read it and it gives me hope now. My husband thinks I am making progress but it is a slow slog. I have lost myself. This is bringing up all sorts of grief. I am sorry to be so negative, you are one of the few people who ask how I am doing, and I feel I can be honest here. 

 

[Catwoman73]

Wow, you live a very exciting life!  I really hope I'm able to travel again someday.  I have to go to a wedding out of province in the summer, and because the logistics of airports etc are so difficult for me right now, I'm just dreading it.  Sad- it should be a fun trip, but it's going to be a lot, so I have anxiety instead of excitement. 

 

Anhedonia has always been a side effect of these drugs for me.  I wasn't always like this.  I used to feel things deeply- I was a highly sensitive child.  Which lead to anxiety in this world that can be cruel... which lead to me taking my first SSRI (Paxil) in my early 20s.  Paxil destroyed something in me, and I never got it back.  I understand now that my poor brain has never had a real opportunity to heal, between my revolving door of drugs, and multiple traumatic experiences- some when I've been on the drugs, some when I've been off.  I believe the trauma changes your brain too, and likely was a major factor in my never learning to feel again.  I'm working hard now to learn to feel and cope with big emotions- something I should have learned as a child, but never did.  If I am able to develop some strategies, I think I can avoid ever taking these drugs again. 

 

I'm so glad you're getting some sleep.  Sleep heals!  How are the symptoms you originally described?  Any changes?

[KateH]

23 hours ago, Catwoman73 said:

 I have to go to a wedding out of province in the summer, and because the logistics of airports etc are so difficult for me right now, I'm just dreading it.

Are you traveling alone or with a companion? I am fortunate that my husband is a very confident traveler and I defer to him to make decisions and problem solve. This is offloading the whole problem onto him but he does not seem to mind. If I were traveling solo, I couldn't make it work...Just too stressful. 

 

23 hours ago, Catwoman73 said:

I was a highly sensitive child.  Which lead to anxiety in this world that can be cruel... which lead to me taking my first SSRI (Paxil) in my early 20s

I, too, was a highly sensitive child. I was started on Prozac in my mid-twenties. Still on it. Will get to that after the Gabapentin and Bupropion... I was severely depressed at the time and remember starting to feel better while on it, at least I was functional. Before that, I could not work in my profession (nursing) and worked on an assembly line making water pics. I have been on it for so long, I have no memory of what I was like before, other than depressed and anxious all the time. 

 

23 hours ago, Catwoman73 said:

I believe the trauma changes your brain too, and likely was a major factor in my never learning to feel again.

     Trauma in my early teens changed my whole personality. I went from being a happy kid to feeling depressed, and anxious and started a lifetime of running from feelings, first with drugs and alcohol then a serious eating disorder. A few other addictions along the way, as well. I have been two distinct, different people ... all separated by several traumatic events in my teens. 

 

23 hours ago, Catwoman73 said:

 I'm working hard now to learn to feel and cope with big emotions- something I should have learned as a child, but never did.  If I am able to develop some strategies, I think I can avoid ever taking these drugs again. 

   You sound like you are developing strategies with the support of your therapist, family, and friends. I never had strategies because I did not have role models in my family that showed me how to get through tough times. Our family rules were "don't talk, don't trust, don't feel". I fight all three of those messages every single day, still. The more permission I give myself to have all my feelings, talk about them, and trust one other human being, the better off I am. 

    Symptoms are improving, very slowly. Still incredibly exhausted. I went out today for several hours and have been on the couch, feeling exhausted since. Only 7 pm and I am heading to bed! So nice to be able to talk with you. I hope you are having a good day. 

[Tweed9674]

23 hours ago, KateH said:

Hello Tweed9674,

    You are so kind to ask. I am not doing so well at the moment. Extreme weakness, fatigue, and it feels like someone turned off the lights inside, I am at the bottom of a deep, dark well, with no way out. I think this is dissociation, anhedonia, and deep depression. All three of these symptoms are everyday occurrences. The only relief is when I fall into a deep sleep, I then wake up alert and like "myself" for a short while until returning to these same symptoms, over and over. I tried going out with my husband today and felt overwhelmed. Stimulation of any kind is unsettling. Most days are spent at home, in bed, in a dark quiet room. But, I need to be out in the world, at least, every now and then. I reread your earlier post, it gave me hope when I first read it and it gives me hope now. My husband thinks I am making progress but it is a slow slog. I have lost myself. This is bringing up all sorts of grief. I am sorry to be so negative, you are one of the few people who ask how I am doing, and I feel I can be honest here. 

 

 

I'm so sorry you are feeling this down.

 

It's good that you can take time to recover and have someone with you along the way despite being so far from home.

 

I also think that it's good that you tried going out even if you ended up feeling overwhelmed.

Going slow, finding your limit and pushing an inch at a time without causing more trauma is hard, but I think it's a good way to fight back.

 

Keep fighting 💪

[KateH]

22 hours ago, Tweed9674 said:

Going slow, finding your limit and pushing an inch at a time without causing more trauma is hard, but I think it's a good way to fight back.

Good counsel. A better day today. Yes, keep fighting. Thanks.

[Catwoman73]

On 4/30/2024 at 12:04 PM, KateH said:

Are you traveling alone or with a companion? I am fortunate that my husband is a very confident traveler and I defer to him to make decisions and problem solve. This is offloading the whole problem onto him but he does not seem to mind. If I were traveling solo, I couldn't make it work...Just too stressful. 

I am traveling this summer with both my husband and my daughter.  Unfortunately, they both have quite severe ADHD, so that makes me the organizer of all the things lol.  I think good planning will be key here.  We did decide to fly out of a smaller airport rather than flying out of Pearson in Toronto.  I think that will help with the overstimulation that inevitably comes with big, crowded places. 

 

On 4/30/2024 at 12:04 PM, KateH said:

I, too, was a highly sensitive child. I was started on Prozac in my mid-twenties. Still on it. Will get to that after the Gabapentin and Bupropion... I was severely depressed at the time and remember starting to feel better while on it, at least I was functional. Before that, I could not work in my profession (nursing) and worked on an assembly line making water pics. I have been on it for so long, I have no memory of what I was like before, other than depressed and anxious all the time. 

I have no idea who I am without the drugs.  I did have a good long break from them before and after my daughter was born, but that time was filled with a lot of trauma, and what I now recognize to be protracted withdrawal.  Life has settled down now, and I am soooo ready to figure out who I am!  

 

I'm actually questioning if I was ever really in need of this medication in the first place.  I was 'depressed' I suppose, but I had just broken up with my first really serious boyfriend when I took my first dose of Paxil.  In a 10 minute appointment, they offered me this 'safe' drug... no discussion of other things that might help, no plan to follow up with me.  I think if I had just been given some time, and been referred to a good therapist, I probably could have ridden it out without the meds.  It helped me by numbing me.  I am now questioning if that was really 'helping me' at all!  Crazy to think how much my life changed that day!!!

On 4/30/2024 at 12:04 PM, KateH said:

I never had strategies because I did not have role models in my family that showed me how to get through tough times. Our family rules were "don't talk, don't trust, don't feel". I fight all three of those messages every single day, still. 

 

Same- I grew up in a military family.  Very practical and tough.  I remember being told that if there's no blood, there shouldn't be tears.  I got the message that I shouldn't trust people with my feelings, and hid EVERYTHING until the last couple of years.  I'm so lucky I have a husband who seems to love me even more now that he knows how much I've been burying.  But it's still hard for me to open up... those early tapes just keep playing in my head- I'm learning healthier ways to cope with that, but I don't know that those tapes will ever stop playing!

 

On 4/30/2024 at 12:04 PM, KateH said:

    Symptoms are improving, very slowly. Still incredibly exhausted. I went out today for several hours and have been on the couch, feeling exhausted since. Only 7 pm and I am heading to bed! So nice to be able to talk with you. I hope you are having a good day. 

It has to be hard being on such an amazing adventure, and dealing with all of this.  I'm glad you're able to get out a little bit- what a shame it would be to travel all that way and be stuck in your room all the time!  Bed at 7pm is totally fine if it allows you to live a little bit.  I hope there are better days ahead for you!

[KateH]

On 5/1/2024 at 7:41 PM, Catwoman73 said:

I think good planning will be key here.

Good planning is the key. So glad you can fly out of a smaller airport. That makes a huge difference. I have used airport chapels to hang out in, there is less sensory stimulation, and it provides a quiet reprieve from all the hustle and bustle. Many airports and airlines are becoming more neuro-divergent aware and addressing the needs of this population. Perhaps checking the airlines and airports for accommodations in this area might be helpful. 

 

On 5/1/2024 at 7:41 PM, Catwoman73 said:

I think if I had just been given some time, and been referred to a good therapist, I probably could have ridden it out without the meds.

    Same here. I was started on antidepressants in my mid-twenties (1980's) and did not find a decent therapist for years. And, I have cycled through many over the years since! All were helpful, but the most progress was made with EMDR, TA, and IFS. 

On 5/1/2024 at 7:41 PM, Catwoman73 said:

I have a husband who seems to love me even more now that he knows how much I've been burying

    How beautiful. You are so fortunate to have such a supportive, loving husband. Priceless. 

    Like you, I don't think the tapes of my troubled upbringing will ever go away. It seems important for me, though, to not act on those dysfunctional messages. As much as I can, one day at a time. In IFS, courage is a Self-trait that I call on frequently to help me do things differently, despite the fear. 

 

 

On 5/1/2024 at 7:41 PM, Catwoman73 said:

t has to be hard being on such an amazing adventure, and dealing with all of this.

    Yes, it has been hard, being bed-bound most days. I am grieving the loss of my health, ability to travel and be curious about the world, engage with the diversity of this amazing world. Connecting to, being present to, and holding a compassionate place for all parts of me has helped.  I listen to A Canadian therapist, Derek Scott, on YouTube. he has helped me traverse the grieving process using IFS. It has been a very healing experience. 

      I wish you the best with your slow taper. You have a strong base of support and inner strength, that will guide you through the process, one day at a time. 

      

[Catwoman73]

Hi @KateH- just checking in on you!  Hope you're hanging in there!

[KateH]

Hello @Catwoman73 Thanks for checking in. Awoke intending to do something with my husband today but am back in bed, barely able to keep my eyes open. The exhaustion is relentless. Have felt discouraged the last few days. So much grieving for the person I once was and fear of the future - that this is my new norm.  I don't know who I am anymore. 

[Catwoman73]

6 hours ago, KateH said:

Hello @Catwoman73 Thanks for checking in. Awoke intending to do something with my husband today but am back in bed, barely able to keep my eyes open. The exhaustion is relentless. Have felt discouraged the last few days. So much grieving for the person I once was and fear of the future - that this is my new norm.  I don't know who I am anymore. 

I'm so sorry Kate.  I can hear the sadness in your words.  I have periods of hopelessness too.  Just a word of encouragement- after 20 years on the drug, it's going to take time, but healing is happening all the time, even when it doesn't feel like it.  Maybe the exhaustion is just your brain forcing you to rest so it can do the work of healing.  I guess I find that a more hopeful way of looking at crappy circumstances lol.  And I don't believe any of us will ever be who we once were, but I hold out hope that this turmoil and suffering will make us different in a positive way- more compassionate, more aware, more present in our lives.  All this to say, just hang in there.  I'm thinking of you!

[FireflyFyte]

8 hours ago, KateH said:

So much grieving for the person I once was and fear of the future - that this is my new norm.

 

While this might be your normal at the moment, you will recover with time.

[KateH]

On 5/6/2024 at 5:55 PM, FireflyFyte said:

 

While this might be your normal at the moment, you will recover with time.

So grateful for those holding the hope. Thank you.

[KateH]

On 5/6/2024 at 3:55 PM, Catwoman73 said:

the exhaustion is just your brain forcing you to rest so it can do the work of healing.

The human body has an amazing propensity towards homeostasis. Yes, I believe the physical rest is so the nervous system can repair. Thank you for your kind and encouraging words. How are you today? 

[Catwoman73]

Meh, struggling with severe pre syncope this morning.  The world goes completely black every time I stand up.  And I slept very poorly.  None of this is new- just another day at the office for me lol.  Weirdly, I think having long covid has helped prepared me for the withdrawal journey- I've really learned to tolerate living in a crappy state.  And I've had to learn coping strategies to get through the days.  That can only help me as I go forward with my taper. 

 

How are you feeling today?  Any better?

[KateH]

So sorry you have been experiencing pre-syncope and lack of sleep - one is enough but both in combination sound miserable. The fact that you can employ coping strategies is heartening. I hope by now these symptoms have passed for you. The decades-old nurse in me wants to say a lot, but my guess is you know what to do, and not to do, when in those states. So, I offer my understanding, wishes for better days ahead, and admiration for your persistence and resistance on the path of recovery from long COVID AND withdrawal - I can't imagine doing both. 

 

14 hours ago, Catwoman73 said:

I've really learned to tolerate living in a crappy state

I am in the process of learning how to live in a crappy state. It is my new normal and as I cycle through all the feelings associated with being ill, I am learning to have self-compassion, something that as a nurse I've had in abundance for others. Now, I must turn that kindness inward. I am encouraged by your recovery journey, and that you practice self-care and compassion. This is how we can help one another, by sharing the highs and lows, and knowing I am not alone. 

    At the moment, I am better, but that can change abruptly. I feel calm and rested. I guess this is called a window. I am aware of the fearful part, telling me that it won't last and that I will feel horrible in a short amount of time. I reassure this frightened part that for now, all is well. This too shall pass, but for the moment I can appreciate and be grateful for clarity. 

    Please write when able and let me know how you are doing. 

     

[Catwoman73]

So glad you're in a window!  That's a wonderful sign!   And I can see that you have really embracing self-care right now, and that will take you far.  It will get better!!!

 

Oh, I know everything I need to be doing.  I'm eating all the salt, drinking water, compression stockings, getting up slowly (sometimes I forget lol).  Days like yesterday are incredibly frustrating, and very hard to deal with.  It only got worse when I went to my ballet class, and ended up having a severe episode of cyanosis... I wrote a detailed account of it on my thread, so I won't recount it here.  I will say that it's not a new thing, and I've had all the cardiac and respiratory testing, and apparently, I'm perfectly healthy.  The medical gaslighting continues.🙄 I am going to return to my doctor and continue to tell him that this is happening, but it likely won't do any good.  No one knows what to do with me.  I guess that's the problem with long covid- nobody really knows anything, so you just get the blank stare when explaining this stuff.  It's exhausting.

 

Nonetheless, it's a beautiful day here, and I'm going to go for a short walk, and sit in the sun.  I swear, I'm going to have the best tan ever by the end of this summer.  Sitting in the sun is one of the only things that takes the edge off the sadness and frustration.... so I'll do it a LOT this summer.  We just bought this house, and it really is designed for outdoor living- nice back yard with a heated pool.  All very therapeutic for me!

[KateH]

So sorry to hear of your cyanotic episodes, they sound frightening and disconcerting, especially when all the testing comes back negative. How frustrating. Long COVID is a mystery to most care providers. Other than the LDN, is there anything else that can be done, other than treat the symptom? How unusual that you are cyanotic and SOB and all pulmonary/cardiac studies are WNL. Are there any triggers for the event? Are there things that help when in the midst of it? How wonderful you are so active, yet have this weird constellation of symptoms arise... I am sorry that your provider is gaslighting you. Another frustration added to the mix. Hope you are doing better today.

How nice to have a "therapeutic" home! I am glad you are in such a healing space, able to get sunshine and a dip in the pool! That's great. 

Today has been a stay close to home day. Exhaustion sets in quickly, my mind is blank, and all I want to do is sleep. Some days are just like that. I do feel good when I awake from naps but soon hit the wall again within an hour or so. These are my days, for now.  Fortunately, I don't have to work and my husband picks up the tasks I can no longer get done.  Love those windows, working on accepting the waves (and remembering that they will pass, too). 

Hoping you have lots of sunshine today! 

  

[Catwoman73]

Hi Kate!  How are you doing today?  I somehow missed your reply.  One day, one minute at a time, right?

 

The trigger is when my HR goes over 125bpm.  Normally, I can attend my dance classes, and just take it easy, but we have a show in a month, so I do have to actually practice performing the pieces, not just walking them through.  And my ballet and pointe numbers are very intense, so they do drive my HR up.  The only thing that helps is stopping and sitting down.  I typically recover in about 10 minutes. There's an ICU nurse in my ballet and pointe classes, and she is super alarmed every time it happens (my whole face and chest literally goes almost black!!!), but what do you do when all your testing is normal?  It's very frustrating.  My theory is that it is somehow related to oxygen delivery at the cellular level, or something with the mitochondria... but there is just no way to know for sure.   I did let my doctor know that it's still happening, but he's at a loss too.  Oh well, onward... I've been in a nice window with my long covid symptoms since yesterday, so just trying to enjoy not being in pain!

[KateH]

That sounds like it could be a very unsettling experience, especially not knowing the cause. What about performing in the show, can you minimize this from happening? I don't know much about dance so wonder if you can slow down the tempo (heart rate)? I can't imagine dancing! Or, anything that would raise my heart rate now....maybe when my energy returns. 

I have not gone out in four days. I don't feel horrible, mostly demotivated and a little depressed. Normally I want to see everything of interest, but not so much recently. Everything appears greyish. The psychiatrist in Istanbul says it's depression (not withdrawal anymore) I don't know what to think. I don't want to change meds, increase meds, or otherwise alter anything med-wise right now. So, I am not seeing her anymore. 

I have found two support groups out of the UK that have been very helpful, both on Zoom. Do you have Zoom support groups? This website has been the most helpful but there is so much information, I tire quickly when perusing it. Happy Mother's Day! Hope you have lots of sunshine today! 

[Catwoman73]

There's nothing at all that I can do- the choreography is challenging and fast.  I'll get through it.  And then everything will slow down again.  If I'm still feeling this awful by the end of this year, I won't be competing or committing to any shows.  I thought I'd be better by now- that's why I agreed to do this.  Lesson learned!

 

I'm so glad you've found some support groups!  Though there's nothing in the world that can make being stuck inside for four days any better.  Especially when travelling.  It sounds like you are suffering from derealization, which is a horrible symptom of withdrawal.  Hang in there... it will get better.  Just at much slower pace than you would like!  

 

There's no zoom support groups here that I've been able to find, but I did just sign on with a nurse practitioner who specializes in psychiatric drug deprescribing, and she does hold support group meetings, so I will be attending those for sure.  So unfortunate about that psychiatrist- I just had a horrible appointment with my family doctor, who is not entirely supportive of my slow taper (that's why I decided to pay out of pocket for the NP).  I was telling him about how sensitive my nervous system is to supplements, meds, etc... he didn't comment, but I got the distinct impression that he believes this is my anxiety returning... he was so on script with absolutely everything this site warned me he would say, it's almost laughable.  I just bought the Maudsley Deprescribing Guidelines... I'm going to gift it to him once I'm through this.  Maybe he'll actually read it and learn something. 

[KateH]

On 5/12/2024 at 3:54 PM, Catwoman73 said:

 I'll get through it.

I hear confidence and commitment in your writing. Attitudes that are encouraging and positive. Good for you!

On 5/12/2024 at 3:54 PM, Catwoman73 said:

derealization, which is a horrible symptom of withdrawal.

I have been contemplating (and researching) this phenomenon. I do believe you are correct. What it has reminded me of is that when I experienced this in the past, I always went to a psychiatrist to have my meds adjusted. I perceived it as a relapse, but now I see it from the perspective of psychiatric drug withdrawal. Instead of heading to a psychiatrist, the path forward seems to be the tincture of time RX (no quick chemical fixes), patience, and self-care/compassion. I would have never gone this route before, so in one sense, the rapid withdrawal from Gabapentin has changed everything I thought I once knew about these drugs. I am using IFS and CBT, peer support, connection with people like you, and meditation to manage. And, so far it is working. So grateful for this support. 

I am so glad you found someone who understands! Your PCP reminds me of the Istanbul psychiatrist I saw, everything inside me now says run the other way when they start spouting relapse vs withdrawal. 

This morning, there is clarity. This is usually how my days start. I relish the times when I experience myself as I once was. My hope is for longer and more frequent windows. But, I am also learning to accept that I don't have to fear the waves, that they too shall pass. 

I appreciate communicating with you. Your insights and experiences are so helpful. Hope you have a wonderful day today. 

 

[Catwoman73]

9 hours ago, KateH said:

What it has reminded me of is that when I experienced this in the past, I always went to a psychiatrist to have my meds adjusted. I perceived it as a relapse, but now I see it from the perspective of psychiatric drug withdrawal. Instead of heading to a psychiatrist, the path forward seems to be the tincture of time RX (no quick chemical fixes), patience, and self-care/compassion. I would have never gone this route before, so in one sense, the rapid withdrawal from Gabapentin has changed everything I thought I once knew about these drugs. I am using IFS and CBT, peer support, connection with people like you, and meditation to manage. And, so far it is working. So grateful for this support. 

I am so glad you found someone who understands! Your PCP reminds me of the Istanbul psychiatrist I saw, everything inside me now says run the other way when they start spouting relapse vs withdrawal. 

This morning, there is clarity. This is usually how my days start. I relish the times when I experience myself as I once was. My hope is for longer and more frequent windows. But, I am also learning to accept that I don't have to fear the waves, that they too shall pass. 

I appreciate communicating with you. Your insights and experiences are so helpful. Hope you have a wonderful day today. 

 

I've lived in various states of depersonalization/derealization for 30 years, since I took my first Paxil pill in the 90s.  It gets better and worse at times, but it has never really gone away.  I always thought I was just fatally flawed- I thought I was just incapable of engaging with the world and other people the way other people could.  Which, of course, made me hate myself even more than I already did.  Looking back now, knowing what I now know, I have such compassion and sadness for the younger me.  I was just a traumatized kid who never learned healthy coping and communication skills.  Geez- even writing this is bringing tears to my eyes.  But in addition to the sadness, I just have such tremendous gratitude for the information available to us now, and for the support we can find.  And I'm grateful to have so much more clarity on how I ended up here in the first place.  I finally feel like I CAN heal, and as tough as the process is, I'm very excited to see what life is going to look like on the other side. 

 

I'm so glad you had a nice, clear morning.  It sounds to me like you are in the perfect headspace for healing.  I truly believe that acceptance, and learning to roll with it makes the process much easier.  I hope your windows keep getting longer too, so you can enjoy this wonderful adventure that you're on.  And keep posting- all this chat is therapeutic!  Enjoy the rest of your day!