Cameron66: 2 Years of Horrible PWS Symptoms--Help!

[Cameron66]

[ChessieCat]

MOD NOTE:  I have transcribed Cameron's first post .  The reason I did this is because if he posts too many attachments, then this one may end up getting deleted so the information will be lost.

 

I have included the drug list which could be used as his drug signature.  However, please be sure to ask the member to proof read it for any errors.

 

Transcription of Cameron's first post.

 

Hi. I'm Cameron66. I live in Chicago. I have HIV, and I experience depression, anxiety, PTSD, cardiovascular disease and peripheral neuropathy (nerve damnge causing pain in feet). Past traumas include botched anal surgery leading to chronic pain, an assault in which my throat was slashed, and my initial bout of peripheral neuropathy (more pain, Fentanyl for a year). I was on Lexapro in 2005-06 and stopped with no problems. I went back on Lexapro in 2015. I tapered off Lexapro for 2 weeks in June 2020.  Within days, I experienced vomiting, diarrhea, headaches, brain zaps, nausea, dizziness/brain fog, fatigue, muscle and joint pain (including frozen shoulder), shortness of breath, insomnia, extreme irritability. Though my peripheral neuropathy had been under control for 15 years, the withdrawal reignited my peripheral neuropathy pain in my feet.  After a few weeks, the vomiting and diarrhea stopped, but the other symptoms persist today.

 

My doctor has been useless. I went to see a psychiatrist in July 2021. He was useless. He literally said, "You're not the norm.", to rationalize his inability to treat me. I got a px for liquid Lexapro and started on 1mL/day. I went up to 3mL by August and stayed at that dose until November. I experienced reduced symptoms; my headaches got less frequent and less severe. I tapered down to 2.5mL by February, but my symptoms worsened. I'm not sure if I tapered down too fast. Were my improvements merely a window followed by a nasty wave? I also wonder if I should have achieved a greater reduction in my symptoms before tapering down.

 

I would love to get some med counseling as I am losing it. I am worried I may not be able to continue my job. Headaches, feelings of dread and fatigue (plus my foot pain) are taking a huge toll on my bodymind, and my personal relationships are deterioriating.

 

Here is my signature.  I tried at least 5 times to insert in my settings, but no matter what I did, it was deemed too big. ? It's less than 12 lines. Please advise on how to make this my signature. Thanks!

 

800mg/150mg Prezcobix, 200mg/25mg Descovy, 50mg Tivicay; 1g Valacyclovir, 5mg Rosuvastatin, .0mg Clonazepam, 20.25mg Testosterone, 4g Omega 3 Acid Ethyl Esters, 81mg Aspirin, 1g Acetyl L Carnitine, 1500/1200/1000mg Glucosamine Chondroitin MSM, 800mg Coenzyme Q10, Multivitamin & 3.5mL escitalopram (Lexapro).

2005-06: 20mg escitalopram - tapered off for 2 weeks; horrible withdrawal symptoms.

July 2021: 1.2mL-2.0mL; Aug-Oct 2021: 3mL [mild improvement]; Nov 2021: 2.9mL; Dec 2021: 2.8mL;

Jan 2022: 2.5mL; Feb 2022: 2.7mL; March 2022: 2.5mL; April 2022: 3mL-3.5mL. Withdrawal symptoms worsened in 2022.

[Altostrata]

Welcome, @Cameron66

 

On 4/13/2022 at 8:09 PM, ChessieCat said:

I went up to 3mL by August and stayed at that dose until November. I experienced reduced symptoms; my headaches got less frequent and less severe. I tapered down to 2.5mL by February, but my symptoms worsened.

 

If 3mL reduced your symptoms, why did you lower it to 2.5mL? Please give your dosages in milligrams rather than mL.

 

To help us out, follow these instructions Please summarize your drug and withdrawal history in your signature You may need to use a computer to do this.

[Cameron66]

Thanks, ChessieCat!  I've read over much of the website, but I don't see any suggestions for the best way to make posts.  Is it better to copy and paste them?  Attach them?  Type them out?  Yes, I see some mistakes in your transcription so I'll correct those, but I'm unclear as to how to proceed.  Should I create a new Intro post?

 

Thanks, Allostrata! I lowered my dosage to 2.5 mg because my symptoms had improved.  My goal is to eventually get off escitalopram.  I am taking liquid escitalopram so the doses are in ml, but I will only use mg from now on. 

 

I am using a computer for this--always do.  I read over the signature instructions and followed them (the same ones you just sent). I tried at least 5 times to insert my signature in my settings, but no matter what I did, it was deemed too big. ? It's less than 12 lines. I tried copy and pasting.  I tried making it an attachment.  Would it be better to just type them all in?  (This information is not in the link you sent.)   I will try again, but if you have any advice, that would be great. 

[Altostrata]

You'd type in the blank Reply to this Topic box at the end of every topic.

 

You might want to compose a very detailed post in a text editor such as Notepad and copy and paste it in.

 

On 4/13/2022 at 8:09 PM, ChessieCat said:

I went up to 3mL by August and stayed at that dose until November. I experienced reduced symptoms; my headaches got less frequent and less severe. I tapered down to 2.5mL by February, but my symptoms worsened.

 

Yes, you probably tapered too fast and too soon. If the worsened symptoms have persisted for more than a month, you might want to updose to 2.75mg

 

Try opening your signature window and typing it in directly.

 

[Cameron66]

Thanks.  I'll type in my signature.

 

Do you mean updose to 3.75mg?  (2.75mg would be a downdose from my current dose of 3.5mg.)

[Cameron66]

Hi. I'm Cameron 66.  Per Altostrata's instructions, I'm reposting my introduction and corrected signature.  I have HIV, and I experience depression, anxiety, PTSD, cardiovascular disease and peripheral neuropathy (nerve damage caused by HIV med's causing pain in feet). Past traumas include botched anal surgery leading to chronic pain, an assault in which my throat was slashed, and my initial bout of peripheral neuropathy (more pain, Fentanyl for a year). I was on Lexapro (escitalopram) in 2005-06 and stopped with no problems. I went back on Lexapro in 2015. I tapered off Lexapro for 2 weeks in June 2020.  Within days, I experienced vomiting, diarrhea, headaches, brain zaps, nausea, dizziness/brain fog, fatigue, muscle and joint pain (including frozen shoulder), shortness of breath, insomnia, extreme irritability. Though my peripheral neuropathy had been under control for 15 years, the withdrawal reignited the peripheral neuropathy pain in my feet.  After a few weeks, the vomiting and diarrhea stopped, but the other symptoms persist today.

 

My doctor has been useless. I went to see a psychiatrist in July 2021. He was useless. He literally said, "You're not the norm.", to rationalize his inability to treat me. I got a px for liquid Lexapro and started on 1mg/day. I went up to 3mL by August and stayed at that dose until November. I experienced reduced symptoms; my headaches got less frequent and less severe. I tapered down to 2.5mL by February, but my symptoms worsened. I'm not sure if I tapered down too fast. ?  Were my improvements a window followed by a nasty wave?  I also wonder if I should have achieved a greater reduction in my symptoms before tapering down.

 

I would love to get some med counseling as I am losing it.  Headaches, feelings of dread, neuropathy pain, and fatigue are taking a huge toll on my bodymind.  I am worried I may not be able to keep my job, and my personal relationships are deteriorating.  But, I'm still here, fighting.  #HopeIsADiscipline  Take care, everybody.

 

 

[ChessieCat]

4 hours ago, Cameron66 said:

Do you mean updose to 3.75mg?

 

Yes, I think Alto meant 3.75mg.

[Cameron66]

Thanks CC!  I upped my dose to 3.75mg today.  

[Cameron66]

My symptoms persist.  Headaches, headaches, headaches.  Nausea mixed with tightness in my chest.  Exhaustion.  Peripheral neuropathy pain in my feet.  And, overall, body pain (muscle, joint, nerve).  I spend a lot of time in bed.  My relationships are frayed, and no one in my life understands what Protracted Withdrawal Syndrome is like.  I upped my dose to 4mg, but there's been little difference.  I can't find information on how people like me who were off their antidepressants for a long period and then went back on due to withdrawal symptoms.  I don't know if I should go back up to 10, 15 or 20mg and start titrating down from there or stay at 4mg for a longer time period.  Are there any psychiatrists in the US that might be able to work with me?  Still here.

-Brett

[Ariel]

@Cameron66

Sorry you are experiencing PWS and such rotten symptoms. 

 

I'm glad you've found SA. The mods are experienced and knowledgeable volunteers who are generous with their expertise. You are in good hands.

 

On 5/30/2022 at 7:06 PM, Cameron66 said:

Are there any psychiatrists in the US that might be able to work with me?

 

I don't know that any psychiatrist would be able to guide you better than the SA moderator staff. 

 

That being said, if you want to find a physician/psychiatrist who understands withdrawal and tapering (which isn't easy to find!), you might read through the thread on 

Recommended doctors, therapists, and clinics

 

Please also keep in mind that escitalopram is a very potent SSRI. I encourage you to read about it here.

 

From your drug signature it looks like in July 2020 you went off 20mg escitalopram cold turkey (a 2-week taper doesn't really count as a taper, unfortunately).

This is a massive shock to the brain and nervous system and will take time to recover from. 

 

Because of your previous experience of "2005-06: 20mg escitalopram--stopped cold turkey with no problems," you may have gone off escitalopram in 2020 with an expectation that it would be as easy as last time? The discrepancy between that expectation (based on previous experience) and the hard-hitting consequence of PWS may make this unforeseen reality feel even more distressing. 

 

On 5/30/2022 at 7:06 PM, Cameron66 said:

My symptoms persist.  Headaches, headaches, headaches.  Nausea mixed with tightness in my chest.  Exhaustion.  Peripheral neuropathy pain in my feet.  And, overall, body pain (muscle, joint, nerve).  I spend a lot of time in bed. 

 

I hear you. I am also going through escitalopram PWS. It's a doozy. 

I've had all the symptoms you describe above, to varying degree. They have all gotten better with time. I can't yet say they're resolved, but they are improving. Each time they appear the intensity is slightly lessened. I feel hopeful that eventually they will no longer pose a problem.

 

I trust that the same holds true for you. You will recover. It takes time but you will get there. Healing is happening all the time, even when we do not consciously feel it. 

 

On 5/30/2022 at 7:06 PM, Cameron66 said:

My relationships are frayed, and no one in my life understands what Protracted Withdrawal Syndrome is like.

 

I hear you. A lot of us experience this. Going through PWS can feel pretty lonely and isolating at times because social interactions can be challenging to perform, relationships hard to maintain, and many people out in the straight world have never even heard of withdrawal let alone know what it's like. 

 

The good news is, you're here! You have found your way to SA, a remarkable healing community of kind souls who all have experience with some version of what you are going through. 

You are not alone. I trust you will find the support you need here. Certainly for me it has been a real game-changer and even positively impacts my relationships in the "outside world"/"real life". 

 

On 4/19/2022 at 4:14 AM, Cameron66 said:

But, I'm still here, fighting.  #HopeIsADiscipline  Take care, everybody.

 

Good on you, Cameron. Hang in there. It gets better! 

 

[Ariel]

@Cameron66

On 5/30/2022 at 7:06 PM, Cameron66 said:

I upped my dose to 4mg, but there's been little difference. 

 

I am not a mod, but just to recap, on April 19th you updosed to 3.75mg, correct? 

 

When did you increase from 3.75mg to 4mg? 

 

Could you please update your drug signature to reflect these changes?

This will help the mods follow recent developments and potentially weigh in on your current situation.