Shari: Headache, ANS Dysfunction, and Urinary Problems

[CdnShari]

Hi there. I'm so thankful that this site exists.

 

Medical history:

2021 Nov - started 10 mg escitalopram for GAD; did not see my regular Dr as she was away during COVID and the Dr I spoke with didn't mention any problems with withdrawal; he also said that I could increase to 15mg on my own whenever I wanted to if my symptoms didn't get better
2022 sometime - increased to 15 mg but didn't see any change in my symptoms 
2023 Apr - increased to 20mg but again didn't see any changes in my symptoms 
2023 Jun - decided to withdraw; spoke with a walk-in Dr who said a week per 5mg taper was fine; within two weeks had heart attack like symptoms and stopped tapering and went back up a bit (was at 10mg and went back to 15mg)
2023 Jul - spoke with same walk-in Dr as well as a pharmacist who told me to do two weeks per 5mg tapering; so I did 15, 10, 5 over 6 weeks
2023 Aug - felt completely fine for two weeks after cessation but then severe withdrawal symptoms started:
- persistent 24 hr headache 
- blurred vision 
- dizziness 
- nausea 
- brain zaps
Severe symptoms lasted for two months; did a bunch of tests that all came back normal - including brain CT. By Christmas, I started developing urinary symptoms which started my autonomic nervous system deterioration

 

Currently:

- I did not reintroduce the medication once the wd symptoms started as my family Dr knew nothing and didn't seek out how to help me; she just said I needed to go through the wd

- I spoke with Dr Mark Horowitz in the UK in 2024 Feb and he confirmed that all the symptoms I was describing were fully consistent with protracted antidepressant withdrawal; my Cdn Dr knew nothing about it (nor cared to do any research)

- I have had a headache now permanently 24 hours a day for 11 months 

- I had to quit my job as I cannot function and I'm living with family 

- My autonomic nervous system dysfunction is very high

- My symptom that I haven't been able to find others with is that I developed UTI-like symptoms to the point of debilitating bladder itchiness and constant urge; and I have had everything tested with a urologist and physiologically everything is normal; I believe that this is due to the ANS dysfunction 

 

QUESTIONS:

1. Has anyone else experienced bladder/abdominal/hormonal problems from the neurological injury that we have?

2: What are peoples' thoughts about reintroducing in order to properly taper now that I've been off for almost 12 months?

[Emonda]

Welcome @CdnShari

 

I'm sorry to hear of your difficulties.

 

On 8/1/2024 at 9:11 AM, CdnShari said:

decided to withdraw; spoke with a walk-in Dr who said a week per 5mg taper was fine;

 

Certainly not the approach taken on this site, nor that recommended by Dr Horowitz, who you mentioned below.

Why taper by 10% of my dosage? The reductions should get smaller and smaller each month, for example: 10mg, 9mg, 8.1mg, 7.3mg etc. This process involves a degree of trial and error, as there is no way of predicting how an individual will respond. Importantly, if you develop unpleasant side effects from tapering, halt the taper, give yourself time to settle, and once stable, taper more slowly and by smaller amounts moving forward. The experience of others suggests that the lower you go in dose, the slower you need to go with tapering.

 

On 8/1/2024 at 9:11 AM, CdnShari said:

I spoke with Dr Mark Horowitz in the UK in 2024 Feb and he confirmed that all the symptoms I was describing were fully consistent with protracted antidepressant withdrawal;

 

It's wonderful that you could speak with Dr Horowitz. He's the medical expert in this area.

 

On 8/1/2024 at 9:11 AM, CdnShari said:

Has anyone else experienced bladder/abdominal/hormonal problems from the neurological injury that we have?

 

You may find the following link helpful in that it lists many possible WD symptoms: This Daily Checklist of Antidepressant Withdrawal Symptoms (PDF) 

 

On 8/1/2024 at 9:11 AM, CdnShari said:

What are peoples' thoughts about reintroducing in order to properly taper now that I've been off for almost 12 months?

 

Everything I have read says that reinstatement is best within the three first months. Beyond that, it's an experiment/gamble.

 

Recovery from ADs and tapering is not linear. There are good days and not-so-good days/weeks/months. This is referred to as the Windows and waves pattern of stabilization.

I suggest you have a read of some of the success stories of those who stopped ADs CT. I often read the stories of others to give me a much needed boost when needed.

We don't suggest many supplements, but two that many of us find helpful are magnesium and omega-3 fish oil. Here are the links for info about those. Add one at a time and start with a low dose to see how it affects you. 

Magnesium and Omega-3 fatty acids (fish oil)

Avoid alcohol. 

Once again, welcome to S.A.

Emonda

[LostInCanada]

On 7/31/2024 at 4:11 PM, CdnShari said:

Has anyone else experienced bladder/abdominal/hormonal problems

Hi @CdnShari welcome to SA. 

Many of us have had these issues. Please check out the member AlaskanGlacier. 

I am so sorry to hear you are suffering through this. 

Have you been able to apply for disability to help financially?

I am glad your family is supportive. 

9 hours ago, Emonda said:

reinstatement is best within the three first months. Beyond that, it's an experiment/gamble.

The choice is up to you. I have seen it go both ways after the 3 month period. Are you now sensitive to foods, supplements or other medications?  It is the possibility of an adverse reaction from the drug that is a concern this far out.

On 7/31/2024 at 4:11 PM, CdnShari said:

UTI-like symptoms

I myself have had this as well as others.

On 7/31/2024 at 4:11 PM, CdnShari said:

My autonomic nervous system dysfunction is very high

What does this look like for you?

 

Your body is healing and working towards normal even when it feels like it isn't. It will get better.

[CdnShari]

On 8/2/2024 at 9:31 PM, Emonda said:

I suggest you have a read of some of the success stories of those who stopped ADs CT. I often read the stories of others to give me a much needed boost when needed.

Thank you, @Emonda, for your reply and thoughts. It is overwhelming for me to even think about my situation most days so I have a hard time reading much and communicating about it. I'm the only one I know of personally in my life going through this (that's likely true for most here) and it's confusing and embarrassing and discouraging. It will be good to read through some of these stories.

[CdnShari]

On 8/3/2024 at 7:21 AM, LostInCanada said:

Have you been able to apply for disability to help financially?

Thank you for your thoughts, @LostInCanada. My doctor in Alberta was not willing to work with me on anything so I couldn't get the medical backup I need. I was on short-term leave from my work for 3.5 months but when I realized that I wouldn't be able to return to my job (the primary source of the mental health issues that led me to be on the escitalopram in the first place), I decided I needed to quite my job entirely and move in with family. So I haven't been able to apply for anything else.

 

On 8/3/2024 at 7:21 AM, LostInCanada said:

I myself have had this as well as others.

...

What does this look like for you?

About 4 months after my withdrawal started, I developed bladder symptoms that were like I always felt like I needed to use the washroom every waking minute. I got all the testing done -- including multiple urinalyses and a kidney/bladder US and even saw a urologist, and everything kept coming back normal. However, for 8 months now, my bladder organ has been so itchy -- especially after I urinate or whenever I am stressed. My whole nervous system feels affected by the injury and this is the worst symptom of it. Also I can't smell properly when there is too much noise. When motors are running (like a fan, AC, furnace, etc), my bladder itchiness gets worse. I feel like I am going completely insane. It's been 8 months of constant itchiness now. Hard to keep going.

[LostInCanada]

On 8/15/2024 at 3:50 PM, CdnShari said:

can't smell properly when there is too much noise. When motors are running (like a fan, AC, furnace, etc), my bladder itchiness gets worse.

Definitely noise and stress is activating you. I struggled trying to read as well, I still can only watch limited tv....a bit of HGTV or the food network. Nothing that will be stressful or take much brain power.

Great news is you are healing. Your body knows what to do. It takes patience, time and acceptance. It is hard for sure. 

Are you aware of the wave and window pattern? 

 

I lived in Calgary for 20+ years. Where are you at? Can you find another doctor? I had an excellent doctor that moved from High River area to Victoria but he is back in Black Diamond again...Dr Tristan Hembroff. I don't know if you are in that area. I have no idea his thoughts on protracted WD but he got my mom off Lipitor and was not happy simple tests had not been done before I was put on paxil.

 

We are here for you. ❤️

 

[CdnShari]

On 8/17/2024 at 8:31 AM, LostInCanada said:

Are you aware of the wave and window pattern? 

Thanks for the video, @LostInCanada If I look back on the last 12 months, there have been some overall slight improvements to my headaches and it's encouraging to think through that history. This bladder thing is just the hardest though - so debilitating.

 

I was in Edmonton but I've moved up to Whitehorse where my family is. The wait for a doctor here is years, unfortunately. However, there is a clinic that has nurse practitioners that I'm trying to get into that people here really like. I'm praying to get someone that will listen. Waiting through each day in this state of excruciating itchiness and pain is so hard.

 

Thank you for your encouragement ❤️🙏🏼

[LostInCanada]

2 hours ago, CdnShari said:

there is a clinic that has nurse practitioners that I'm trying to get into that people here really like. I'm praying to get someone that will listen.

Hopefully you will find someone willing to learn and listen. There is a section on the site discussing how to speak to a doctor. Hopefully that will help. Glad you are having improvement. 👍❤️🙏