Kendra20220: Neurologist had me d/c Effexor 75mg cold turkey

[Kendra2020]

Hello everyone. 

 

I was previously rx'd Effexor by my general practitioner 11/2016 when my job got unbearable and I wanted to walk out of work every single day. I had no idea about the horrors of the medication until I tried to stop it cold turkey when finding out I was pregnant September 2017. Bad idea. I ended up miscarrying November 2017. Cold turkey was miserable and I had to get back on the medication to taper down. 

 

March 2018, I was diagnosed with POTS and prescribed metoprolol succinate 25mg and fludrocortisone acetate 0.1mg. The day after I filled these medications, however, it was determined I was pregnant. I spent the following 9 months completely un-medicated. After giving birth 12/3/18, I remained un-medicated and breastfed baby for 9 months.

 

In the meantime, I called my neurologist to get an appointment so I could resume my Narcolepsy treatment. My previous neurologist was not accepting BCBS, however, so they scheduled me with the other neurologist in the office. 

 

I saw the neurologist in October 2019.. Not only did it take 3.5 hours in the waiting room, this new neurologist ended up telling me he did not treat Narcolepsy, instead he specialized in dementia.. and he did not feel confident or comfortable in treating me beyond prescribing me the previous medications, which included Effexor and Admodafanil... he said Effexor 75mg.. I asked him if it wasn't more ideal to taper up on the medication, thinking I remembered a 37.5mg dosage... he didn't know and was ready to send me on my way.. Already having an uncommon disorder and having learned to be my own advocate, I pushed him for more answers he didn't have. He ended the appointment by telling me he through my previous neurologist was back to accepting Blue Cross Blue Shield and "it won't hurt my feelings if you want to schedule your follow up with him"... 

 

So, off I went, feeling unheard and defeated, and filling my medication. I wanted my previous neurologist to see in 3 months that I had tried to be compliant. So I began my armodafanil 75mg and effexor 75mg. I'd also started my POTS medication, too, the metoprolol and fludrocortisone.

 

December 2019 rolled around and I had zero holiday feels. I dreaded the family gatherings, the gifting, the socialization, any of it. December 20, 2019, my friend asked me to join her for lunch. She was concerned about my fascination and curiosity of what the physical process of a bullet going through a skull felt like. (IE: If the skull exploded from insurmountable pressure, if this was painful, or what.) After a two hour lunch break and summarizing all of life's stress, I assured her I was fine.

 

Side note: I am currently going through a lengthy custody battle which has involved a custody evaluation and home study. Those visits have brought up a lot of previous mental and physical abuse-- it's easier to just tell people I divorced my first husband for a reason, as opposed to having to get in to all of the reasons. This has been expensive and stressful for my second husband and I. 

 

Here it is, January 2020 now, and my morbid curiosity has moved to asphyxia and how easy it could be to stage my own suicide as a homicide. The appointment with my original neurologist couldn't come fast enough.

 

01/16/2020, I saw my neurologist.. I told him how the armodafanil wasn't really working, it just makes me feel a wired tired and about the overwhelming thoughts of death. Because of my head space, I was not comfortable trying any new stimulants, so the doctor increased my armodafanil and told me he would fight with insurance to try Wakix (this is appealing to me because I feel like the stimulants have done a number on my heart). He told me he would not be doing me any justice if he switched my effexor to something else with my head where it was right now. He told me to discontinue the effexor and scheduled me an appointment with a psychiatrist. He also questioned my narcolepsy diagnosis, theorizing out loud.. what if you have major depressive disorder.. which has similar symptoms of narcolepsy.. and your narcolepsy blood test is a false positive... The doctor spent 45 minutes with me, for which I am thankful, but I left with so many more questions.

 

That night, instead of taking the effexor, I took great pleasure in throwing the medicine bottle in the garbage. In the back of my mind, I should have known better. Friday wasn't too bad, but the weekend was unbearable. I feel bad for my three kids and they deserve so much better than this from me.

 

It's now Tuesday and my first day back at work from the holiday weekend. I'm miserable. I feel like I am going to fall over, my head is spinning, I'm sweating and tingling, my left eye feels twitchy, even sitting down I feel like I could fall over, and I'm incredibly grumpy (luckily I recognize it enough to just keep my mouth shut which has been very awkward over the phone).. at my wits end, I reached out to a Venaflaxine support group and was referred here....

Please tell me this ends. Or maybe I should just dig my prescription out of the trash and cut open the capsules to start bead counting? 

 

 

For Narcolepsy with Cataplexy, I've been taking Armodafinil 75MG. This was recently increased to 150MG while my doctor fights with insurance to try Wakix.

For POTS I take metoprolol succinate 25mg and fludrocrotisone acetate 0.1mg

And I was on Effexor 75MG

 

[Sassenach]

Hello Kendra  and welcome to SA.

 

This site is run entirely by volunteer Administrators and Moderators, all have been through or going through withdrawal.

There are no commercial interests or influences  involved .

 

I am sorry you are having such a rough time but you are now in the right place.

 

The site is currently extremely busy so please ensure you answer any requests from staff fully.

 

You have been through a really tough time and did extremely well to get through your pregnancy in these circumstances.

Please confirm you ceased Effexor 75mg on Friday 17th January.

You are experiencing withdrawal symptoms from the cold turkey off Effexor.

The only known way to mediate W/D symptoms is to reinstate a SMALL dose of the drug.

Please note: Under no cicumstance should you reinstate at either 37.5 or 75mgs.

If you still have the Effexor dig it out of the bin.

We need full info. on all drugs and supplements in the last two years, follow the link below to do this please.

Please add a signature.  Include drugs, doses, dates, and discontinuations & reinstatements in the last 12-24 months. Also include supplements. This will help us give you the most accurate advice we can. 

• Any drugs and supplements prior to 24 months ago can just be listed with start and stop years. 
• Please use actual dates or approximate dates (mid-June, Late October) rather than relative time frames (last week, 3 months ago) 
• Spell out months, e.g. "October" or "Oct."; 9/1/2016 can be interpreted as Jan. 9, 2016 or Sept. 1, 2016. 
• Please leave out symptoms and diagnoses. 
• A list is easier to understand than one or multiple paragraphs. 
• This is a direct link to your signature:/settings/signature/

This is particularly important due to your condition and the muliple drugs involved.

The links below will help you understand what is happening and we can move forward.

what-is-withdrawal-syndrome/

about-reinstating-and-stabilizing-to-reduce-withdrawal-symptoms/

the-windows-and-waves-pattern-of-stabilization/

why-taper-by-10-of-my-dosage/

the-rule-of-3kis-keep-it-simple-keep-it-slow-keep-it-stable/

 

Because multiple drugs are involved I will refer this to @Altostrata .

It will be necessary to determine the best re-instatement dose if you decide that is how you wish to proceed.

 

As soon as we recieve the drugs info. we can assess your situation.

In the meantime DO NOT MAKE ANY CHANGE TO YOUR CURRENT MEDS please.

Please feel free to browse the site, it is a wealth of info.

Other members threads will give you an insight and the opportunity to share experiences.

 

Again welcome.

 

Sassenach

 

[Altostrata]

Welcome, Kendra.

 

What times of day do you take your drugs, and their dosages? Please put ALL your drugs in the Drug Interactions Checker https://www.drugs.com/drug_interactions.php
and copy and paste the results or a link to them in this topic.

 

As Sassenach implied, you might get that Effexor package out of the bin, open up one of the capsules, and take 6 beads. This at least may take the edge off withdrawal symptoms. Please let us know how you're doing.

 

Then, you need to find a doctor -- perhaps a neurologist -- who will minimize your drug burden. It doesn't make any sense for you to suffer adverse drug effects to treat an initial complaint of dysautonomia.

 

Personally, I would not take a new drug such as Wakix, which was approved by the FDA only a few months ago and most likely has as yet unknown but significant adverse effects. I don't understand why psychiatrists and neurologists are so eager to experiment on their patients.

 

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