NikNak: Effexor Withdrawal

[NikNak]

Hi, 

I realize this is not protocol. I joined the group, but I don’t have access to my medical records right now, and I honestly can’t remember my complete drug history. I can list some of the drugs I’ve been on, but timeframes, etc. I’m afraid I can’t currently provide. I am 34 (F) married with 2 children. 
 

What I can say is that for a period of about 6-8 months in 2022 and up to February 2023 I was only taking vyvanse and using a marijuana vape pen daily. I was feeling better than I can remember in history and although I should have probably recognized this as unsustainable, I was making progress in therapy and happier and more functional than I could ever remember being—even if in hindsight I now see that I was foolish.
 

I was several months into coming off of hormonal birth control and was not having a period on it. In February, I had bad pms and my vape was not making me feel better so I discontinued use abruptly. Within a matter of a few days I was in the throes of depression, anxiety, and what I suspect is also burnout (I am diagnosed ADHD, but highly suspect being on the autism spectrum, which my new psychiatrist informally assessed and agrees). 
 

Unfortunately, when this commenced, I didn’t have a psychiatrist, and my doctor put me on escitalopram (I’m sorry I can’t even remember that dose). I tried to fight through but symptoms were getting worse and though I wasn’t actively suicidal, my family was concerned that my ideation was becoming active and encouraged me to go to the hospital. I went and they put me on duloxetine. I went home, but continued to struggle immensely and ended back at the hospital where they added quetiapine,  clonazepam 0.5 x2 daily, intuniv 1mg. They tried to get me to take rexulti but I was already in such an overwhelmed state that and reacted with such terrible akathisia that I refused to continue with it. Then they put me on Effexor— this was mid-April. I was discharged to a hospital adjacent treatment center for two weeks where the psychiatrist there wanted to up my dosage from 150mg to eventually be on 300. Even at this state I felt the medication was wrong for me. I allowed one increase and was on 187.5 when I went home. I recognized the quetiapine was causing no benefit and had urinary retention issues so I discontinued it, probably not slowly enough. 
 

My new psychiatrist agreed that Effexor was not reacting well with me and that I was on too large a cocktail of drugs and wanted to reduce the Effexor. He originally wanted me to go down a dose weekly, but I felt unstable so I switched to every other week. I felt some significant withdrawals at 75mg but without knowing better I dropped down to 37.5 where I have remained for 53 days now. In terms of physical side effects, my appetite is all but gone, I have headaches which are not so debilitating, I have GI issues—more so at the beginning of my taper,  but I also very recently tested positive for celiac and ceased eating gluten. However, it is the psychological and nervous system symptoms that are most distressing. I feel I am always in fight or flight—activated and overwhelmed almost all the time and any slightly stressful stimulus sends me into a panic attack or meltdown. I am waking with huge cortisol spikes and anxiety and then inevitably experience a panic/meltdown episode in the evening regardless of my daily situation,  occurring somewhere between the hours of 4 and 7. I have trouble getting to sleep, and trouble getting up in the morning. I have a deep sense of hopelessness and suicidal ideation. 
 

I will list what medications I’m currently on and their doses. I realize this is not protocol and if you can’t advise me through messaging , I understand and will try to get a medication history if I can. 
 

clonazepam 0.5x 2 daily (10am and 6pm) 

effexor Xr 37.5 mg 10 am 

vyvanse 40mg 10am 

intuniv 1mg before bedtime 

 

other supplements: omegas, vitamin d, magnesium, multivitamin, complex B, zinc, selenium, and some anti-inflammatory ones inc: turmeric, quercetin, L- Lysein.

 

- I sometimes take l-theananine and GABA but haven’t found them terribly effective in providing any relief for anxiety. 
 

- I have on occasion taken Ativan 1mg but try to avoid it unless there is dire need 

- I also sometimes have to take zoplicone for sleep but again am afraid of adding any more drugs of dependence. 
 

One final note is that my symptoms all seem to increase considerably before and into the start of my period. Blood test revealed what a naturopath considered potentially low progesterone, so this past cycle I had supplementation from day 14 at 25mg and then the week before my period I upped it to 50mg but saw no improvement. 
 

I realize this is a lot of information and not the route I’m supposed to take but I am deeply afraid right now. I have a psychiatrist appointment on the the 13th, and I don’t know what to advocate for or to do. All I know is I am suffering immensely. My parents are in medicine and want to me to do ECT as I have in the past in 2012; they thought it helped but I can’t remember that whole period and I already have always had a poor autobiographical memory and I am very hesitant to cause my brain and nervous system any more damage. 
 

Again, I apologize for this inappropriate communication, but I am desperate and in a state of crisis and have little trust in the medical community after years of falling through the cracks.
 

 

[NikNak]

Hi, 

 

In late February of this year I quickly fell into a depressive episode— within a week from nothing to severe depression and anxiety(I thought it was bad pms because it coincided with my pms and menstrual cycle). Before this, I had 6-7 months of remission. I was only on vyvanse 20mg, no longer taking continuous birth control (minestrin). However, I was using a THC vape pen. When I began to feel depressive symptoms the TCH wasn’t helping and I quit abruptly, so withdrawal from that was likely a culprit in worsening the episode. In hindsight, I should have known the remission period was unsustainable given that THC was highly implicated in my mood and symptom improvement, but I was mostly micro-dosing and felt so well that I ignored my better judgement.  I initially tried escitalopram, but I had increased anxiety and akathisia. My family was concerned with my low mood and suicidal ideation and I was hospitalized where I was put on Duolextine, I think up to 60mg.

 

I was then put on Effexor in hospital April 15. By May I was on 187.5mg. I was having adverse side effects including emotional blunting, but it wasn’t helping the depression, and I was also having significant GI discomfort. I got a new psychiatrist and he agreed the Effexor wasn’t helpful and also felt I was on a large cocktail of drugs (still on them as listed in signature) and wanted to get me off of what I was put on in the hospital and just be on vyvanse to get a better clinical picture. His taper schedule was a dose every week starting in the beginning of June. I had bad GI symptoms and emotional liability, and expressed concern at which he suggested I wait 2 weeks between tapers. I got down to 37.5 by July 21st. At 75mg I was feeling more psychological negative effects, but nothing like I am now experiencing at 37.5mg which I’ve been in for 53 days now. Physical symptoms are GI, headaches, insomnia and fatigue (not awesome but could manage). Psychological symptoms are debilitating. Anxiety is unrelenting and usually acute in the morning but I have panic attacks/meltdowns at least once a day between 4-7. During PMS/ menstrual cycle these intensify and I feel I am liable to have a panic attack at any moment. My appetite is gone and I was very recently diagnosed with celiac disease so I have discontinued gluten during this time as well. Additionally, I am seeing a naturopath who put me on a low dose of progesterone this past cycle as she considered there was an imbalance/low progesterone, but I noticed no symptom improvement to my pms/pmdd. 
 

I have a psychiatry appointment this Wednesday and have no idea what I should do or advocate for. My doctor mentioned Vraylar, but I’ve tried a few a-typical antipsychotics and always discontinued due to intolerable side effects of anxiety/akathisia, so I am very reticent to try one again—especially in the midst of severe withdrawal. 

 

I feel vulnerable in sharing this, but I also had ECT back in 2012 (I can’t remember this time period), but my parents (both in medicine) are convinced it helped and keep bringing it up; however, shocking my brain and nervous system when it is already so hypersensitive and dysregulated seems like a very unsafe idea to me. 
 

I apologize for the length of the post, I tried my best to summarize effectively. I appreciate any and all feedback, and send out my care and condolences to anyone struggling with withdrawal ♡

[Altostrata]

Welcome, @NikNak

 

On 9/11/2023 at 1:43 PM, NikNak said:

My new psychiatrist agreed that Effexor was not reacting well with me and that I was on too large a cocktail of drugs and wanted to reduce the Effexor. He originally wanted me to go down a dose weekly, but I felt unstable so I switched to every other week. I felt some significant withdrawals at 75mg but without knowing better I dropped down to 37.5 where I have remained for 53 days now. In terms of physical side effects, my appetite is all but gone, I have headaches which are not so debilitating, I have GI issues—more so at the beginning of my taper,  but I also very recently tested positive for celiac and ceased eating gluten. However, it is the psychological and nervous system symptoms that are most distressing. I feel I am always in fight or flight—activated and overwhelmed almost all the time and any slightly stressful stimulus sends me into a panic attack or meltdown. I am waking with huge cortisol spikes and anxiety and then inevitably experience a panic/meltdown episode in the evening regardless of my daily situation,  occurring somewhere between the hours of 4 and 7. I have trouble getting to sleep, and trouble getting up in the morning. I have a deep sense of hopelessness and suicidal ideation. 

 

It appears that you have withdrawal syndrome from making large reductions in Effexor. If I were you, I would not make any drug changes now, let your nervous system settle down.

 

On 9/11/2023 at 1:43 PM, NikNak said:

clonazepam 0.5x 2 daily (10am and 6pm) 

effexor Xr 37.5 mg 10 am 

vyvanse 40mg 10am 

intuniv 1mg before bedtime 

 

For what reason are you taking each of these drugs?

 

What times o'clock do you take your drugs, with their dosages? 

 

We offer peer support to help people reduce their drug burden and cope with withdrawal syndrome. We cannot advise you on how to adjust your cocktail. It seems you've already had quite a bit of cocktail adjustment, which has gotten you to this state. If I were you, with such a poor track record, I'd stop seeking a drug solution.

[NikNak]

Thanks for the reply. I don’t think I’ve ever gotten a proper diagnosis to be honest, I do have symptoms of depression and anxiety. I have also received a diagnosis of ADHD within the last year and suspect autism which is supported but not formally diagnosed by my current psychiatrist. I also just discovered that I am celiac through blood work, and am seeing a rheumatologist in October as 3/4 women in my family are diagnosed with immune disorders including but not limited to lupus, so I want to investigate any potential role of inflammation/immune disease in addition to celiac that could be a contributing factor.
 

As for the cocktail of drugs,  this was unfortunately the result of a most unhelpful hospital stay. I can list my drugs and times taken below and the reasons for each:

 

-10 am Effexor 75mg—for depression, I just increased the dose yesterday at the advisement of my psychiatrist as I was unable to tolerate the withdrawal symptoms on 37.5mg and couldn’t really eat/was losing weight.

-10am clonazepam 0.5 mg for anxiety 

-10am 40mg vyvanse for ADHD

-6pm clonazepam for anxiety

-propranolol 10mg, this was prescribed along with my increase of Effexor as I was experiencing panic attacks with pulse rates up to 140. My understanding is that I should take it before the onset of a full panic attack, and can take increase the dosage if needed. 
bedtime 1mg intuniv (some sort of 3rd tier adhd med for emotional regulation etc) 
 

I’m on day 2 of the increase of the Effexor. I didn’t take any propranolol yesterday so I could note any changes from the increase. I had less anxiety overall yesterday of less intensity, and no panic attacks; still some emotional lability. Today is a bit of a rougher day emotionally, but also less overall anxiety/ absence of panic attacks. My appetite has increased some physically (stomach gurgling) but I still struggle in feeling appetized by food and feel sick when I try to power through eating. I am having nutritional supplements and eating as much as possible when I can. 
 

 

[Altostrata]

19 hours ago, NikNak said:

-propranolol 10mg, this was prescribed along with my increase of Effexor as I was experiencing panic attacks with pulse rates up to 140

 

Those "panic attacks" were from acute withdrawal syndrome. Reinstatement of the drug often resolves withdrawal syndrome.

 

If I may observe, you seem to be getting a random batch of diagnoses addressed by a random batch of drugs. From your drug history since September 2021, none of these combinations seems to have solved your problems, so your prescriber keeps changing your drugs. From my perspective, these are signs your doctors have no clue what they are doing.

 

As you are under the active care of a psychiatrist and in the midst of increasing or adding drugs, please take your questions to your prescriber. Please let us know when you want to reduce your drugs.

 

 

[NikNak]

Hi Alostrata,

Just to clarify, my current psychiatrist did not prescribe any of my current medications, save increasing my vyvanse by 20mg and the propanolol which was in response to my tachycardia. 
 

His concern is the same as yours and mine—that I am on a large cocktail of drugs that is likely unnecessary and obscuring a clear clinical picture. Aside from the vyvanse, it is his intention to withdraw me from the other medications as well. The reason I went up from 37.5mg to 75mg was in the hopes of stabilizing so that I can carry on with a much slower and stable taper. 

 

My current doctor, like many, underestimates the prevalence of severe withdrawal and the increased risk with fast tapering. That being said, he is a caring person and has since validated my concerns and is willing to collaborate with me in coming off of them at my comfort level, which is unfortunately rare to find, at least in B.C. where most people have to be in acute crisis or wait many months to see a psychiatrist and then it is usually only for a few appointments and not continual care. 
 

I agree with your assessment of my previous care, the psychiatrist that misdiagnosed and treated me for bipolar ii in late 2021 was negligent in many respects, including ordering the proper bloodwork, and did not provide continual care. Following that, I was under the care of my GP until I had a hospital stay this Spring which accounts for most of the medications I am now on—including the Effexor. 

[Altostrata]

21 hours ago, NikNak said:

Just to clarify, my current psychiatrist did not prescribe any of my current medications, save increasing my vyvanse by 20mg and the propanolol which was in response to my tachycardia. 

 

Please review adverse effects of Vyvanse, for example, in the package insert https://www.accessdata.fda.gov/drugsatfda_docs/label/2007/021977lbl.pdf

 

On 9/16/2023 at 7:53 PM, NikNak said:

-10 am Effexor 75mg—for depression, I just increased the dose yesterday at the advisement of my psychiatrist as I was unable to tolerate the withdrawal symptoms on 37.5mg and couldn’t really eat/was losing weight.

-10am clonazepam 0.5 mg for anxiety 

-10am 40mg vyvanse for ADHD

-6pm clonazepam for anxiety

-propranolol 10mg, this was prescribed along with my increase of Effexor as I was experiencing panic attacks with pulse rates up to 140. My understanding is that I should take it before the onset of a full panic attack, and can take increase the dosage if needed. 
bedtime 1mg intuniv (some sort of 3rd tier adhd med for emotional regulation etc) 
 

 

Good to hear you're feeling better under the care of your psychiatrist, with 2 drug increases and the addition of a new one.

 

Please let us know when you want to reduce your drug burden.

[NikNak]

Altostrata, 

I came to this group hoping to find help and support for lowering my Effexor. My Vyvanse increase was many months ago, and the propranolol and increase of Effexor to 75mg from 37.5 was in response to severe withdrawal symptoms. I don’t know where the miscommunication has occurred, but I do in fact want to lower my medication burden, as does my doctor, even if he was misguided in my original plan for titration. Obviously, I want to survive the process and can only withdraw from one medication at a time, which is why I am seeking advice for withdrawing from Effexor 

I am already overwhelmed and trying to proceed the best I can with the support I have. I was not able to tolerate the withdrawal effects on 37.5 and since my post had not been approved by the date of my appointment, I had to proceed with the knowledge I had and the doctor’s guidance. As I’m sure you know, support groups will offer varied and often contradictory advice. 
 

I’m sure many vulnerable people, like myself, come to this site looking for advice, support, and understanding. Instead, your responses have been dismissive and causing me to feel even more disheartened than I already was. I understand your passionate views in regard to the misuse and mismanagement psychiatric medications. I am not ignorant to the harms of medications or the broken medical system I have to try to navigate and advocate for myself. This is the very reason I came here. To seek help. Not to be shamed for the amount of medications I am on—most of which were prescribed when I was extremely vulnerable with very little agency in  the hospital. If I could have held out on 37.5mg safely, I would have done so, but I could not. My other options were to increase my dose to stabilize or to try a bridge medication; both of which came with inherent risk. I made the best decision I could with the information I had at the time. Even if you disagree, you could do so in a constructive manner and offer suggestions of how to move forward with titration from here on out, instead of assuming that I am choosing to “burden” myself with more medication. The last thing people who are struggling to find answers and hope in the midst of their mental illness need is more stigma and shame. Please consider this when responding to people, like myself, who are genuinely seeking guidance. 

[FindRest]

On 9/11/2023 at 3:43 PM, NikNak said:

 

My new psychiatrist agreed that Effexor was not reacting well with me and that I was on too large a cocktail of drugs and wanted to reduce the Effexor.

 

 

6 hours ago, NikNak said:

[adding] propranolol and increas[ing] Effexor to 75mg from 37.5 was in response to severe withdrawal symptoms.

So your psychiatrist knew you were reacting badly to Effexor, yet decided to double your dose after being down to 37.5 for almost 2 months? If someone is having a possible adverse reaction to any drug, it would seem that the last thing a doctor would want to do is double the dose.  He/she also was concerned about the drug cocktail you were already on, yet added an additional drug and increased the the dose of two others.  Does this sound like a doctor you want to continue to trust?

 

Also, Effexor is an activating drug. The withdrawal symptoms you were having largely involved an activated and destabilized CNS. Doubling the Effexor in the middle of all of this increases the odds greatly of causing further activation. Some of us were conditioned to believe that we need a pill to make the symptoms go away. Unfortunately, once the CNS becomes destabilized, there really is no such thing as a pill making everything OK or getting us back to where we were prior to tapering. Most often, the best thing to do when in this condition is to not add any new drugs and not make anything but minuscule changes in dose, if any at all, until things have stabilized. It’s a slippery slope.

 

6 hours ago, NikNak said:

[I came here] Not to be shamed for the amount of medications I am on

Alto wasn’t shaming you. It’s your previous doctors and current psychiatrist who should be ashamed. We all trusted the professionals who put us on these drugs and now we are the ones left paying the price. Meanwhile, they keep throwing more drugs at us hoping something sticks and in our desperation we oblige. To continue to trust those same doctors would be dangerous on our part. 
 

Yet, you come here to a peer support group to get help and free advice to take back to your paid doctor and choose to make the following comments:

 

6 hours ago, NikNak said:

 your responses have been dismissive

 

6 hours ago, NikNak said:

Even if you disagree, you could do so in a constructive manner and offer suggestions of how to move forward with titration from here on out,

Do you see how this looks like a sense of entitlement? Alto doesn’t owe you anything. She has already freely posted a ton of documents on this site regarding how to properly taper a whole variety of drugs, deal with withdrawal symptoms, and everything else that goes with it.  She now took time out of her own life, in the middle of any of her own life-circumstances, to selflessly and personally respond to your request and many others just like it. She does this not because she has to and not because she has an abundance of free time. She reached out to you because she cared and was concerned about you.
 

6 hours ago, NikNak said:

I am not ignorant to the harms of medications

It appears that you are, just like the rest of us were. 
 

Going forward, I’d recommend that you:

 

1) Spend time reading through the Symptoms and Self Care forum along with the Tapering forum, paying particular attention to the documents on tapering Effexor.
 

2) Spend time on drugs.com to research all of your medications, their side-effects, and any drug interactions between the various drugs.
 

3) I also wouldn’t change any of your medications without hearing from Alto or a moderator first.

 

4) Update your signature to include all of the drugs and supplements you are currently taking, including Ativan and Zoplicone. See my signature for reference. BTW, B vitamins are also activating and tend to make WD symptoms worse.

Edited September 19, 2023 by FindRest

[Altostrata]

@NikNak you posted that you increased Effexor last Saturday. We cannot assist when people are in the midst of increasing or changing their drugs, under specialist direction or not.

 

If your psychiatrist is so interested in reducing your drugs, why doesn't your psychiatrist learn how to do it? I'm feeling pressured to provide unpaid assistance to a doctor who is probably very well paid.

 

On 9/17/2023 at 4:45 PM, NikNak said:

Just to clarify, my current psychiatrist did not prescribe any of my current medications, save increasing my vyvanse by 20mg and the propanolol which was in response to my tachycardia. 

 

I tried to give you a hint about the Vyvanse. It can cause arrhythmia. You and your doctor both need to look stuff up.

 

It's absurd to diagnose or treat someone for ADHD when they're taking clonazepam and 3 other drugs that may cause inability to focus or concentrate. 

 

Also, if someone is in a withdrawal state, it makes no sense at all to add or increase a stimulant.

 

On 9/11/2023 at 11:45 PM, NikNak said:

My doctor mentioned Vraylar, but I’ve tried a few a-typical antipsychotics and always discontinued due to intolerable side effects of anxiety/akathisia, so I am very reticent to try one again—especially in the midst of severe withdrawal. 

 

You're welcome to rely on this doctor, but we're not going to be able to assist as long as you and your doctor are rearranging your drug cocktail.

[NikNak]

Hi, 

 

I’m sorry you feel pressured to provide advice, that is not my intention in coming here. I came here because I recognize that psychiatry as a whole seems to overlook or underestimate the impact and consequences of rapid withdrawal and was looking for support to know what to do.

 

In terms of psychiatric care, my options are to try to work with my doctor I have or not have one at all, as the need far outweighs the capacity where I live. He validated that I was experiencing withdrawal symptoms, and he is open to self-advocation.

 

I was on a the stimulant before seeing him.  I agree that it may be unhelpful to be on, but I’m unsure of how to taper off of it without causing further instability.  
 

As for the Effexor, I have done research, and reinstatement of a previous dose is supported as an option if withdrawal symptoms become unbearable.

 

I don’t plan to make any further changes other than hyperbolically tapering the medications I am on. I can’t change the past, all I can do is try to move forward from where I am currently. I am trying to research and advocate for myself as best I can, but there’s so much conflicting information out there and  I do struggle to navigate it all. 
 

If I could try 11 different doctors and find one who was more enlightened with regard to withdrawals or providing a clear diagnostic picture, I certainly would, but I am regarded as extremely privileged to have a psychiatrist for continual care at all. Psychiatry feels like an underdeveloped discipline and, at least where I am, it is operating within a broken system that leaves many vulnerable people underserved.

 

I sincerely do want help to reduce my medications, and I am sorry that we see that differently. Maybe my decisions and those of my doctor were not what you would advise, but I didn’t have that advice when those decisions were made. Again, I do not plan on adjusting my medications further and would very much like guidance in how to proceed in the safest manner, but if that is something you are unable to do under the circumstances, I will try to find counsel as best I can in support groups and hopefully find a path forward. 

[NikNak]

On 9/19/2023 at 2:54 AM, FindRest said:

 

4) Update your signature to include all of the drugs and supplements you are currently taking, including Ativan and Zoplicone. See my signature for reference. BTW, B vitamins are also activating and tend to make WD symptoms worse.

Edited September 19 by FindRest

@FindRest I am no longer taking those medications, they were PRNs that I took very sparingly—especially the Ativan which I barely took at all.

[NikNak]

I am going to see my psychiatrist tomorrow. I went up from 37.5mg to 75mg on September 15th. While some of the withdrawal symptoms seemed to dissipate a bit—mainly the daily panic attacks—there are still a lot of symptoms happening but it is difficult to tell what is from the initial fast withdrawal, and what could be potentially side effect related to the increase to 75mg. Overall, my mood and emotional lability hasn’t improved. My panic is somewhat downgraded to intense anxiety, but the panicky feelings definitely still pop up. 
 

Additionally, my symptoms before my menstrual cycle increase dramatically, with more emotional lability, feelings of hopelessness, worthlessness and SI, and an increase in the incidence of panic type episodes—essentially I seem to have pmdd. My first cycle after being on the increased dosage was also very irregular and lasted 10 days, so between that and the pmdd I maybe have a week and a bit where I am not experiencing the added complication of hormonal issues. I am also continuing to experience great difficulty eating, often being physically unable to eat due to anxiety/emotional state, as well as almost no desire for most foods. I can sometimes get past it, but other times if I try I just start gagging. This is concerning to me, as I know proper nutrition can be an important factor in getting through withdrawals. It also likely impacts my fatigue, which is also quite bad and makes it difficult to engage in exercise (as well as feeling dizzy or faint with up and down movement etc). I am supplementing with nutritional drinks, which isn’t ideal, but something I can get down and at least get some calories in. I am not dropping wait terribly fast, but seem to be on gradual if slow decline.

 

Given this information, I’m wondering if anyone has any advice in terms of next steps? I don’t know how long or if I will stabilize at this dose, I am reticent to up the dose of Effexor in the even that my symptoms get worse. I am also concerned about staying the course as the medication-induced anorexia and severe pmdd are both negatively impacting my physical and mental health. 
 

Do I have any options other than waiting it out at this point? 

 

* I know my situation is complicated, but any and all advice would be appreciated. I feel a great deal of isolation and helplessness in regard to all of this 😔. 
 

 

[Fifree]

Hi NikNak. Welcome to SA. 

1 hour ago, NikNak said:

I feel a great deal of isolation and helplessness in regard to all of this 😔. 

It does feel very isolating doing this WD thing and you have my sympathies for sure. It's a tough road. I don't think anyone, who hasn't been through it, can really understand, and that includes doctors. I'm glad you've found one who is willing to listen to you, even if they don't quite know what to do themselves.

 

I'm not a mod or a mentor and can't offer you any advice beyond, when in doubt, hold.

From what I've read here, stability is key to calm things down. Jumping around in doses and medications often just makes things worse.

 

Anyway, I just wanted to pop in and offer support. You're not alone here. Sometimes it can feel like you're typing into the void but someone will be along... and you never know, but what you write can help someone else that you don't even know about.

 

All the best.

 

Fi

[NikNak]

Thanks @Fifree, I appreciate the solidarity. Holding seems like the most sensible advice, it’s just hard to commit to when things are so unsustainable and uncertain. I suppose I’ve only gone back up to 75 for 1.5 months, so there is room yet for stability to happen. 

[Catina7]

A big hello to you @NikNak and welcome to SA.  I have had problems with Effexor too, so I can relate somewhat to what you're dealing with.  Sometimes a long hold is necessary.  Hang in there while the staff tries their best to help you.  I know how this can really disrupt our life, and it can really get us down sometimes, but we're all in this together.  Keep enduring the best you can and find things that help you feel calm and grounded.  We're all here for you!

 

Sending you empathy and a big cyber hug!

 

Catina ❤️

[LotusRising]

Hi @NikNak

 

Could you please update your signature to reflect your current dosages of medications, as well as any supplements that may have changed.

 

As mentioned above, the key here is to hold where you're at. Please do not make any further changes.

 

I know how hard it is to navigate the conflicting information out there and understandably, it often drives us to continually make dosage adjustments - I did this myself. Since you also have parents in medicine, I presume you are also feeling a lot of pressure to follow mainstream medical advice. While we live in a society with a "doctor knows best" mentality, a lot of us have come to see the cracks and shortfalls of this way of thinking, especially in psychiatry. I encourage you to spend some time reading through the site - there is no shortage of information to support the benefits of the harm reduction strategy that we advocate for, and please be reassured that the information and the support you receive here is based on years of helping others come off their medications.

 

It really sounds like your nervous system has been on a rollercoaster of different medications, supplements and other substances, creating imbalances in all your body systems. Our nervous system is always trying to come back to homeostasis, but it can't do that if we are always increasing, decreasing, or adding new things into the mix, hence the request to stop where you're at and hold. This might help you and us to figure out next steps.

 

What are your most prevalent symptoms right now? What coping skills are you using?

[BigCat]

@NikNak I am holding having reduced from 300 to 225.  I hit a buffer, but things are picking up for me after a few difficult weeks...  you will find the same.  Keep the faith.  It will pass. 

 I made this up, it's not an "actual" quote: "L'exposition du merde est temporaire". 

Always better in French. 

[NikNak]

@LotusRising I’ve updated my signature. I’m not sure, it could probably be formatted better. 
 

My doctor agreed that we should remain in this holding pattern and be tracking data to see how to proceed. The only thing that I might augment is adding the lowest estrogen oral contraceptive and taking it continuously; I’ve done this in the past to prevent hormone fluctuations. While this would technically be a change, it would be in an effort to create more homeostasis as I am already vulnerable to hormone imbalance and am sensitive to hormone changes. Effexor seems to exacerbate this vulnerability, and my volatility during pmdd is concerning in terms of the intensity of my further drop in mood, increase in both hopelessness and SI, and in this cycle the impulse to self-harm (action was limited to clawing at skin but concerning as this is not typical for me. I do have an appointment both with an OBGYN and my naturopath next week so I can discuss this with them as well. 
 

My most prevalent symptoms right now are: 

- emotional lability inc very frequent crying and meltdowns 

- anorexia (aversion to food and difficulty eating due to emotional state, not related to controlling food intake/ body image etc.) 

- fatigue/low motivation

- intense anxiety/feelings of panic 

-low mood/hopelessness/feelings of worthlessness/ SI

- some feeling of faintness when standing up or bending down

- headaches (usually in the morning) 

- cognitive difficulties 

-pmdd and inconsistent period

 

Coping skills: 

- counselling— just started seeing a new counsellor 

breathing exercises 

- trying to activate dive reflex through cold ice pack on eyes/face 

- walking (incidence of this has gone down due to fatigue, motivation to go out in inclement weather, etc. I would like to increase this.

- spirituality—praying, Bible study at church, talking/texting/meeting occasionally with someone affiliated at church/ prayer request

- my support system is limited but I’m trying to expand it through things like that church contact, bible study on Wednesdays, talking to a few safe people, I was doing weekly walks with a newer friend but it’s become more inconsistent, mostly because of me not feeling up to it or sometimes scheduling difficulties. 
- my parents are not great emotional supports but do help out financially as I am unable to work but also unable to qualify for disability; they also take our 2 kids overnight on weekends once in a while or my mom will help take them to school if I have an appointment, though she will be starting work soon. 

Honestly, my coping is not great and it’s a challenge to find things that help, even the breathing and other distress tolerance skills seem to have limited efficacy. I’m hoping my new counsellor may have ideas as I am neurodivergent and she has experience with that. 

 

 

 

[LotusRising]

15 hours ago, NikNak said:

he only thing that I might augment is adding the lowest estrogen oral contraceptive and taking it continuously

 

Has this helped in the past? It's my understanding that PMDD is related to low progesterone, and taking estrogen on its own is not usually recommended. I'm glad you have an appointment coming up to discuss.

 

It sounds like you're practicing a lot of coping skills, which is great. I would definitely try to keep up with walking - I know it's hard, we have snow here right now, so I have to force myself to get out there, but I know if I don't, I won't sleep well and my mood will dip. On the days you can't walk, maybe just sit outside - I did this in my early days of tapering when my symptoms were such that getting out for a walk wasn't doable. 

 

Have you had a chance to look in Symptoms and Self-care?

 

How are you sleeping?

 

[NikNak]

@LotusRising

 

Sorry, I think there was a miscommunication, the birth control has progesterone, it would just be the kind with the lowest estrogen. 
 

My sleep is variable. I often have trouble getting to sleep and can have vivid dreams, night sweats, etc. 

 

I have looked previously in the self-care section but I will look again. 

[LotusRising]

3 hours ago, NikNak said:

the birth control has progesterone, it would just be the kind with the lowest estrogen

 

Ok, good to know.

 

For sleep, I would try to maintain a consistent schedule. Do you already have a good sleep hygiene routine? Again, getting outside, especially in the morning is key here for good sleep. I use one of those blue lights too, if I can't get out first thing. I think it helps to some degree, but I definitely feel better if I get outside.

[NikNak]

@LotusRising 

 

My sleep schedule could definitely be improved. I’ve been struggling with insomnia, but my sleep habits don’t help with that either. Weekdays I wake up at a consistent time to bring my kids to school, but lately my depression and especially during pmdd I find myself coming home and crashing. I know I would benefit from more structure, regular exercise, etc. but I’m so demoralized and weary in my mind, body, and soul that I’m struggling to find the strength to do it. 

[LotusRising]

I totally understand.

 

Establishing long-lasting, sustainable changes won't happen over night. Are there one or two actionable steps you could take right now to help your sleep? If you wake up at a consistent schedule, could you also go to bed at a consistent time? Could you try something soothing before bed like a hot bath or yoga nidra? Are you close enough to walk with your kids to school in the moring? Instead of coming home and crashing, could you go for a quick walk around the block. Just some ideas. Think baby steps first. 

[NikNak]

Haven’t posted in a while. I’m really not doing well. I wish I had more answers as to what is going on. My medications haven’t changed much since I had to reinstate my Effexor to 75mg last September. I’m down to 20mg of vyvanse, hoping to taper off of that before attempting another Effexor taper. I also started on continuous birth control in an attempt to mitigate hormonal fluctuations and pmdd, but I don’t think it is working as I hoped. Since being on 10mg vyvanse, I have been spotting regularly. 
 

I am currently seeing the same psychiatrist, he hasn’t provided much guidance on my medications. I see a counsellor weekly who does AEDP therapy but I’m not sure how much it is helping either. A psychologist had confirmed I have cptsd.

 

I am unable to function hardly at all. Even dropping my kids off and picking them up for school is a monumental task. I feel like I am completely under the control of my limbic and nervous system. I don’t think I ever experience a parasympathetic nervous system state, and I’m almost constantly crying. I take my meds at 9 and two hours later I get hit with anxiety, which lately is also resulting in IBS type symptoms, but usually only in the morning/afternoon.
 

Honestly, I’m losing hope. I have so many drugs to taper off of, and I already am in such an unstable state, I don’t know how I can survive worse. We don’t have much community at all, and I feel distant from everyone and everything including my kids and husband, who has become more my caretaker than anything else. We’re all neurodivergent and my kids both need autism assessments but the process and cost and what times are all barriers. I have them on a waitlist for therapy—I'm terrified of the damage I’m doing to them by my prolonged illness. 
 

We are on a single income and only get by with the help of family—we live in one of the most expensive, if not the most expensive part of Canada and prices just keep going up.

 

Everything just feels so hard, I’m not even sure you could call what I’m doing living anymore, I’m barely surviving. 
 

I know people want schedules of what people’s days look like—honestly, I don’t know. Some days I can manage to get out and do a few errands or walk, other days my emotional lability makes me feel like a prisoner in my own home.

 

I just wish I knew what to do or had more answers about what was going on. Am I stuck in protracted withdrawal? Has my brain and nervous system just been damaged too much from years of medications and treatments? 
 

 

[Fifree]

Hi Niknak. I'm sorry to hear that you're having such a rough time of it, but I'm glad that you have support from your husband. I'm sure that whatever is happening, you are doing your best and what more can you do.

 

Effexor is a terribly difficult drug to come off and I think you are doing amazingly well to have got down to 75 from 187.5. And if you are able to do school drop-offs, you are functioning. Be proud of what you're managing to achieve. 

 

I really hope that you stabilise soon.

 

Thinking of you