Dawn3: Journey with Concussion and Venlafaxine

[Dawn3]

Hello,

 

I sustained a head injury in a few years ago and was put on Effexor in Oct 2023 to help with my migraines (and depression). I was previously on various SSRIs as well as Lamictal (hopefully I didn't forget anything in my signature). In the beginning, the Effexor helped tremendously with my migraines and it also seemed to help with other aspects of my post concussion symptoms, so my doctor and I agreed to continue increasing it. I ended up on 187.5mg by March of 2024 and I wish my previous practitioner had warned me what a nightmare this drug could be.

 

In my concussion recovery, I dealt with exertion intolerance, but things were improving by January 2024 - I was going to the gym, driving and working more. However, over the next few months, my exertion intolerance declined and I started to experience tachycardia and orthostatic intolerance (yes, I am being screened for POTS and have been checked out by cardio, but don't meet the criteria). These symptoms have been extremely debilitating - I have difficulty even walking across my small apartment at times and doing basic household tasks without experiencing significant shortness or breath and palpitations. I have done my own research and know that SNRI's can accelerate cardiac activity, increase BP & HR and even induce a POTS-like phenotype in some individuals (happy to cite these sources if anyone is interested). Since my symptoms worsened along my increase of the medication, I started the journey of trying to come off it (May 2024). The practitioner I had at the time was of no help, so I started taking beads out and was down to 150mg by end of June/July. I believe at this time I started to experience withdrawal symptoms (shakiness and a sensation of weakness in my arms and legs) alongside the debilitating side effects I was already experiencing. I paused my reduction for a month and started working with a new practitioner and was put on a low-dose beta blocker to try and keep my heart rate under control. She did not want me using the bead-taper method, so was been on 112.5mg XR and cutting a 37.5mg pill in quarters to get down from 150 to 112.5mg over the course of 2 months; 9.375mg every 2 weeks (I know this is not the hyperbolic taper method). This was going relatively smoothly - I experience some withdrawal symptoms a few days after dropping the dose, but seemed to stabilize after about a week.

 

Two weeks after finally getting down to 112.5mg, the withdrawal hit (luckily, I had paused further reducing at this time). Since then, I believe I experienced windows and waves. One month after my last reduction, my withdrawal symptoms became severe. My withdrawal symptoms manifest very physically and alongside my side effects. Sometimes it's hard to discern SE from WD as they can overlap. My WD symptoms seem to also be exacerbated by minimal exertion. I experienced the feeling of weakness in arms/legs (like my limbs are made of bricks and jello); when I would stand it felt like something was falling through me. At this time, my practitioner wanted me to start Cymbalta and she even pressured me to take the first dose on the video appointment with her. I took one dose of 30mg and after 12 hours felt increased vertigo. I didn't take it again and joined joined a FB regarding venlafaxine taper. I had some knowledge of hyperbolic tapering, but have informed myself more from the resources from this FB group. As I was experiencing pretty severe withdrawal, I re-upped to my previous dose (122.5mg). Even after 2-3 days I started to see improvements. Now 2 weeks now, I am not back to my baseline, but it is probably 70% better in terms of WD; seems like it comes in windows and waves as people describe, but it is relatively manageable. I plan to stay at this dose for a few months so I can stabilize and then hopefully continue my taper using the hyperbolic method (5%).

 

Outro Health is suppose to open up in my area soon, so I'm hoping to work with them as my current practitioner wants me to go faster with my taper. I think that she is well intentioned, but misinformed. I can see that she wants to help me as this medication has wrecked havoc on my life and disabled me, but I'm sure everyone here can confirm that going faster could be even worse.

 

I should also mention that I recently increased my beta blocker from 25mg to  37.5mg metoprolol (beta blocker) which also gives me side effects (although it's obviously hard to discern what's WD, VFN side effects and the beta blocker SE). The tachycardia and cardiac-related SE from VFN make it hard to perform daily functions and the beta blocker has made me slightly more functional. I feel stuck as coming off beta blockers has been difficult for me in the past and in some ways it could be making this situation worse. At this point, I know it's best to not make any further changes until I feel that I am more stable. 

 

I have a great therapist (who happens to be a health psychologist, specializing in migraine and tbi) and has been with me since my head injury. I've moved back in with my parents for now as I was having difficulty taking care of myself, so I have good social support, but of course was devastated to leave the community where I was living. I am able to work part time remotely for a former company, but have to reduce my screen time due to visual issues from the head injury. I am trying to do the necessary self care, but it is a struggle to not stay in bed all day and cry or search this sites obsessively all day. My friends and family beg that I "stop reading." I know they are right, but if I hadn't, I could have ended up in an even worse situation than I am now. I know that these behaviors are maladaptive, but my behaviors and negative thinking patterns are like super pathways in my brain; I've spent years trying to re-direct them. Therapy, meditation, biofeedback, distraction (and of course medication :p).  it's not for lack of trying. Exercise use to be a massive tool for my behavioral health, but I unfortunately cannot exercise. If I do too much exertion, I end up in a flare for days to weeks; even gentle walking for more than 2-3 minutes will leave me out of breath. It is not deconditioning (as many doctors like to say) as I was able to walk a few miles and exercise at the gym less than a year ago. I've done my research on related conditions (Dysautonomia: POTS and IST), CFS/ME, but will truly not be able to know my baseline until off the medication as it can induce these conditions. And I still have lingering issues from my head injury.

 

I am hoping that I will experience relief from some of the SE at lower doses, since I believe norepinephrine is likely the culprit of cardiac sympathetic activation, but this may take a very, very long time. It's such an awful position to be in; stuck on medications that are disabling me, but not able to get off them fast enough. I try to remain hopeful and work on my mentality, but it is very hard for me. After working to heal from my head injury for 2+ years, this is a nightmare worse than I ever could have imagined. Through my head injury, I learned a lot about the brain and neuroplasticity and the nervous system. I hope one day things will look different.

[Jane318]

Greetings @Dawn3 and welcome to SA.  We are a community of volunteers providing peer support in the tapering of psychiatric medications and their associated withdrawal syndromes. 

 

Thank you for completing your drug signature.

 

I am so sorry for all you have been through and continue to suffer.  I am grateful you were able to find some accurate information about AD withdrawal and hyperbolic tapering method, and to resist your physicians' pressure to stay Cymbalta.  That you are motivated to do the reading & research as well as work part time, given all you have been through is amazing!  Yes, we must learn to balance the reading with other activities so as not to get dragged down.  But knowledge and connection with others going through AD withdrawal is important.

 

On 11/1/2024 at 2:54 PM, Dawn3 said:

As I was experiencing pretty severe withdrawal, I re-upped to my previous dose (122.5mg). Even after 2-3 days I started to see improvements. Now 2 weeks now, I am not back to my baseline, but it is probably 70% better in terms of WD; seems like it comes in windows and waves as people describe, but it is relatively manageable. I plan to stay at this dose for a few months so I can stabilize and then hopefully continue my taper using the hyperbolic method (5%).

You were wise to updose and agree you should stay at this dose for a few months, or more, if necessary to stabilize before continuing a slow, controlled hyperbolic taper.  

 

On 11/1/2024 at 2:54 PM, Dawn3 said:

Outro Health is suppose to open up in my area soon, so I'm hoping to work with them as my current practitioner wants me to go faster with my taper. I think that she is well intentioned, but misinformed. I can see that she wants to help me as this medication has wrecked havoc on my life and disabled me, but I'm sure everyone here can confirm that going faster could be even worse.

Good news!  And yes, your practitioner, like man/most, lacks knowledge of what it takes to get off these powerful drugs.  I and many others here can attest that going too quickly often leads to disaster.

 

On 11/1/2024 at 2:54 PM, Dawn3 said:

I should also mention that I recently increased my beta blocker from 25mg to  37.5mg metoprolol (beta blocker) which also gives me side effects (although it's obviously hard to discern what's WD, VFN side effects and the beta blocker SE).

Yes, it is not always possible to attribute symptoms to a specific cause.  However, the response is the same - if immediate adverse reaction, stop the drug.  Otherwise, hold or reinstate or updose if necessary and wait to stabilize.

 

On 11/1/2024 at 2:54 PM, Dawn3 said:

At this point, I know it's best to not make any further changes until I feel that I am more stable. 

Agree - your body needs time to re-group / recover from prior changes.  I am currently in month 4 of holding after updosing in the summer and will likely stay here for at least a couple more months.  It seems wise to taper of Effexor first.

 

On 11/1/2024 at 2:54 PM, Dawn3 said:

I have a great therapist (who happens to be a health psychologist, specializing in migraine and tbi) and has been with me since my head injury. I've moved back in with my parents for now as I was having difficulty taking care of myself, so I have good social support,

This is a huge blessing, although I know it was difficult to leave your prior living community.  This is temporary.

 

On 11/1/2024 at 2:54 PM, Dawn3 said:

but my behaviors and negative thinking patterns are like super pathways in my brain; I've spent years trying to re-direct them. Therapy, meditation, biofeedback, distraction (and of course medication :p).  it's not for lack of trying.

Most of us are struggling to learn healthy ways of dealing with life's trials instead of relying on drugs to avoid / suppress them.  We have many forums on strategies for coping with symptoms.

 

On 11/1/2024 at 2:54 PM, Dawn3 said:

Exercise use to be a massive tool for my behavioral health, but I unfortunately cannot exercise. If I do too much exertion, I end up in a flare for days to weeks;

Rigorous or even moderate exercise is a trigger for many people.  You are learning to be listen to your body and be gentle with yourself.

 

On 11/1/2024 at 2:54 PM, Dawn3 said:

I am hoping that I will experience relief from some of the SE at lower doses, since I believe norepinephrine is likely the culprit of cardiac sympathetic activation, but this may take a very, very long time. It's such an awful position to be in; stuck on medications that are disabling me, but not able to get off them fast enough.

Unfortunately, it is the nature of these powerful drugs that it is very easy / quick to become dependent upon them, but takes a long time to get off of them.  Also, it is at the low doses that things can get problematic if you don't go slow enough.  This is because it is at the low doses that the brain changes happen very quickly - the hyperbolic curve is steep here.  We've adopted a new mantra here at SA:  "Slow is the new fast."  ESPECIALLY in light of your brain injury, you want to be gentle and patient.  The time will go by regardless.  You want to get through the days ahead doing everything you can to support the healing process, and that includes going slowly.

 

Recommend you track your symptoms daily, which will help you identify windows and waves and see progress over time.  You can use the following list of typical withdrawal symptoms as a template for a journal, if you wish:  Daily Checklist of Antidepressant Withdrawal Symptoms (PDF) 

 

On 11/1/2024 at 2:54 PM, Dawn3 said:

Through my head injury, I learned a lot about the brain and neuroplasticity and the nervous system. I hope one day things will look different.

Thus you know that the brain and CNS DOES and WILL heal!  Not as quickly as any of us would like.  But each moment / day is a step in that direction.

 

We recommend only two supplements here at SA, magnesium and omega-3 fatty acids.  

 

Here are some threads and links you might like to check out if you have not already:

Drug Interaction Checker. Good news that it does not flag any interactions between Effexor, Metoprolol and Ajovy.

Why taper by 10% of my dosage?

Important topics in the Tapering forum and FAQ  

Tips for tapering off venlafaxine (Effexor)

Windows and waves pattern of stabilization

Video:  Healing From Antidepressants - Patterns of Recovery

We have many threads on how to cope with symptoms – I encourage you to check out the various forums / links on the SA.org home page.

 

 

This is your introduction topic.  Each member gets one intro topic- please post updates and questions here, in this thread.

 

Do explore the rest of the forum – there is a lot of great information here.  Be sure to read “About SurvivingAntidepressants.org,” which has good information about how to use / search the site: https://www.survivingantidepressants.org/forums/topic/54-about-survivingantidepressantsorg  

 

Also, feel free to read and comment on the intro threads of other members.  This is how you build a community of people who understand what you are dealing with.   It is so helpful to connect with others who are experiencing the same things.

 

I look forward to following your journey, and helping out in any way I can.  Best wishes.

Edited November 5, 2024 by Jane318

[Dawn3]

Hi @Jane318, thanks for your supportive words. 

 

Unfortunately, since I wrote this, my symptoms have gotten worse. Specifically, flu-like achiness, unbearable fatigue, feeling of weakness in my arms and legs. I am having difficulty standing and can't walk more than a few steps. These symptoms have increased over the last few days which is about 2 weeks after increasing the beta blocker. This is not the first time I've experienced severe fatigue/achiness from a beta blocker (this has happened with 2 other beta blockers over the years). When I tried propranolol, the side effects hit at about the two week mark as well. I know these symptoms overlap with withdrawal and so it's hard to pinpoint, but I think I need to consider reducing the beta blocker, at least to my previous dose. I'm even wondering if it's making my VFN withdrawal worse. I'm not as familiar with the mechanism of beta blockers, but I know it can reduce norepinephrine to some extent. I wonder if nervous system is responding to a decrease in norepinephrine from the beta blocker. I stumbled upon some recommendations on this site regarding beta blockers and the 10% reduction every week or so was recommended. I'm not sure if I should do this or simply go back to the dose I was on 2 weeks ago. I know this will cause an upsurge in cardiac side effects (shortness of breath and tachycardia) as I've had to go off a beta blocker before. This did pass in a few days. I know making changes in a short period is not advised, but it seems like the increase of the beta blocker has made symptoms/withdrawal worse. 

[Dawn3]

In case this is more clear:

 

9/14/24: Reduced to 112.5mg VFN

 

10/18/24: Re-upped to 122.5mg VFN because of withdrawal (improvements within a few days, WD symptoms come and go over the new few weeks.)

 

10/26/24: Increase beta blocker from 25mg to 37.5mg -- recommended by my cardiologist to combat the tachycardic episodes that would leave me bed bound. It's not certain if my dysautonomia is caused by the VFN or if there is an underlying condition. Unfortunately, we may not know until I'm fully off it, but that could take years. 

 

11/2-11/3 Increase in fatigue and body aches(when I've had side effects from beta blockers, it will usually hit me at around the 2 week mark; of course there's no way to know for sure if this is attributed to WD or SE, but this my best guess and intuition from knowing my body). 

-physical and sleepy fatigue, trouble staying awake, sleeping 12 hours

 

11/3-11/5 Weakness in arms/legs, nausea/queasiness, brain fog. Continued fatigue/body aches (fatigue more physical, less sleepy). 

-these symptoms more align with what I've experienced in WD so far. 

 

In retrospect, I wish I had not increased my beta blocker at this time as I am trying to stabilize on my dose of VFN after having significant withdrawal. I am trying not to get too bogged down in regret, but I'm trying to figure out the best way to move forward. I would like to reduce the beta blocker if it is making things worse, but am also concerned about making more changes. 

 

[LotusRising]

13 minutes ago, Dawn3 said:

11/2-11/3 Increase in fatigue and body aches(when I've had side effects from beta blockers, it will usually hit me at around the 2 week mark; of course there's no way to know for sure if this is attributed to WD or SE, but this my best guess and intuition from knowing my body). 

-physical and sleepy fatigue, trouble staying awake, sleeping 12 hours

 

11/3-11/5 Weakness in arms/legs, nausea/queasiness, brain fog. Continued fatigue/body aches (fatigue more physical, less sleepy). 

-these symptoms more align with what I've experienced in WD so far. 

Hi @Dawn3

 

I'm so sorry for everything you're experiencing right now. But, I'm very glad you found us. 

 

It can indeed be difficult to know what symptoms are coming from where at time.

 

I wonder if you would mind answering a few questions to get a better sense of what's happening:

 

Do you experience these symptoms all throughout the day? Is your metoprolol extended release? Did you note any improvement from increasing the metoprolol?

[Dawn3]

Hi @LotusRising, 

 

Thanks for your response! 

 

Happy to provide more context! My symptoms do indeed fluctuate throughout the day - My body aches were more intense this morning, then by the afternoon I had an overall flu-like feeling, then by the evening I was having nausea and weakness in my legs. Right now, I'm having more mild flu-like feeling, but some of the other symptoms have subsided. I take my meds around 11am in the morning. 

 

The Metoprolol is extended release. My tachycardia and shortness of breath has improved from increasing the metoprolol, but the fatigue and body aches have gotten worse and it seems like my other withdrawal symptoms (queasiness, weakness in arms and legs) have re-emerged as well after feeling more stabilized a few weeks ago. I know of course that the WD can come and go, but it seems like the increase in the beta blocker may have induced the other WD to re-emerge.  

[LotusRising]

@Dawn3 thank you!

 

50 minutes ago, Dawn3 said:

My symptoms do indeed fluctuate throughout the day

The fluctuating pattern does seem more like WD symptoms, but you probably know your body best. 

 

51 minutes ago, Dawn3 said:

queasiness, weakness in arms and legs

Do you recall if you had these same symptoms upon initiating metoprolol in August? 

 

In general, do you feel better or worse since increasing the metoprolol?

[Dawn3]

1 hour ago, LotusRising said:

Do you recall if you had these same symptoms upon initiating metoprolol in August? 

Nope. 

 

1 hour ago, LotusRising said:

In general, do you feel better or worse since increasing the metoprolol?

Worse. I think my concern is the increase in the beta blocker has worsened withdrawal. I know one can become hypersensitive to any changes, so I fear I might be in this position. If this is the case, is it better to decrease the beta blocker to my previous dose or will that be another change my system will be sensitive to. 

 

[LotusRising]

@Dawn3

 

10 hours ago, Dawn3 said:

Worse. I think my concern is the increase in the beta blocker has worsened withdrawal.

It's so difficult to tell when there is such an overlap in symptoms. But if you're feeling worse, one might guess that reducing metoprolol would help. It sounds like this is what you're leaning toward?

 

Have you spoken with your provider about reducing the metoprolol back to the last dose?

[Dawn3]

Hi @LotusRising, Yes, I know this is a challenge. All I have is my best guess, intuition and knowing my body. I have reached out to my practitioners and I imagine they will say to reduce down my beta blocker. I think I will do 10% every 1-2 weeks until I'm back down to my dose of 25mg and then see how I feel. I know the docs would probably say to just go back down to my previous dose, but I'm trying to avoid any more drastic changes, so I'll taper it hyperbolically.  

 

When my withdrawal was severe about a month ago, I re-upped my dose and I saw improvement in a few days. My WD symptoms never fully went back to baseline; seems to shift day to day, but definitely seems there was at least a resurgence in the last week. At this point, I don't think I would be comfortable updosing again.

 

It's so difficult. I'm afraid I will never stabilize and be stuck on this drug that is likely causing disabling health challenges.  

[Jane318]

1 hour ago, Dawn3 said:

It's so difficult. I'm afraid I will never stabilize and be stuck on this drug that is likely causing disabling health challenges.  

Please try to let go of that fear - Rear only works against us!  Your body is designed to heal, and it will, as you support the healing process by maintaining status quo (no (or few and gradual) changes for quite a while), healthful thinking, proper rest, appropriate supplements, and managing your symptoms as best you can.  You've been through so much, but you will prevail.  As Emonda says, TIME + PATIENCE. 

 

Here are some links to forums about managing symptoms - perhaps one or more will be helpful to you:

Apathy, anhedonia, emotional numbness, emotional anesthesia 

 Derealization or Depersonalization

 Non-drug techniques to cope with emotional symptoms

 Easing your way into meditation for a stressed-out nervous system

Music for self-care: calms hyperalertness, anxiety, aids relaxation and sleep

Ways to cope with daily anxiety

"Change the channel" - dealing with cognitive symptoms

Dealing With Emotional Spirals

Symptoms and self-care

Getting Started With Mindfulness

[LotusRising]

6 hours ago, Dawn3 said:

 

It's so difficult. I'm afraid I will never stabilize and be stuck on this drug that is likely causing disabling health challenges. 

Yes, definitely a difficult situation, but I don't think you'll be stuck on this drug indefinitely. I think we all believe this to a certain extent while tapering, but it is simply not true. You will get there 💚

 

[Dawn3]

Thank you @Jane318 and @LotusRising for your encouraging words. I've been trying to keep them in my mind. And thank you for the links. I am having trouble getting myself to do much at all, but I at least try to sit outside for a little while each day and listening to a audiobook. I am able to do a little work for my company, which takes my mind off, even though it fatigues me. 

 

At the moment, my flu-like symptoms and queasiness are better, but I'm still dealing with a lot of fatigue. Hard to say if this is WD or SE of the beta blocker (which I did decrease by 10%). However, my cardiac symptoms (shortness of breath, tachycardia, air hunger and high resting hr) have been slightly better (again, hard to say if this is the increase in the beta blocker, or from now being on a lower dose of the venlafaxine). I may continue to reduce the beta blocker in small increments (possibly less than 10%) to see if it improves my fatigue at all. I have to weigh whether the relief in my cardiac symptoms is worth the increase fatigue in this case. Both are debilitating in their own way. 

 

The symptom that is the most alarming is a heaviness feeling in my limbs. It's almost as if I worked out the previous day, but obviously haven't. It's not an ache or a cramping feeling. It started when I was in acute withdrawal, but at that point it felt like bricks were falling through my body when I went to stand or even walk a few steps. It's not as severe as that, but I'm afraid anything I do could make it worse. As I believe I mentioned early on, I am barely able to walk short distances because of my cardiac symptoms, so I have not been able to do any form of exercise. I'm currently walking about 1500 steps throughout the day around the house, but had to install a chair lift in my parents home because I cannot do the stairs. I also use a wheelchair if I leave the house. It seems worse on my right side than my left and I seem to have some sort of tremor in my right lower leg. This all seems related to withdrawal as these symptoms emerged during this period. I had a less severe withdrawal episode in June 2024 when I got just below 150mg. I had a milder version of all of these symptoms. After I re-upped my dose to 150mg, the symptoms mostly subsided in about 2 weeks. I didn't start tapering again until August 2024. The symptoms, like the tremor started to come back during this period. 

 

I am of course updating my doctors and think this is most likely withdrawal (and not something more serious going on), but it is quite limiting.  I also don't think this is something the doctor's really understand (which is of course why we are here!). I saw a clip of a interview with Dr. Mark Horowitz this week and he said that many people get misdiagnosed with Chronic Fatigue Syndrome, Functional Neurological Disorders, Fibromyalgia etc., so it seems the withdrawal can cause some really odd symptoms. I am looking into having a consult with him in the near future. 

 

I am still planning to hold at my current dose of 122.5mg. I wish I could keep moving forward, it feels like I keep losing function. It's hard to keep waiting, hoping, not knowing if these symptoms will improve enough to continue tapering. 

[Jane318]

4 hours ago, Dawn3 said:

I am still planning to hold at my current dose of 122.5mg. I wish I could keep moving forward, it feels like I keep losing function. It's hard to keep waiting, hoping, not knowing if these symptoms will improve enough to continue tapering. 

Wise to hold.

 

I understand the discouragement.  But someday you will look back on this and realize it was only a temporary season.  We cannot hurry this healing, no matter how much we want to.  Do what you can, rest as much as you need, practice gratitude for what you have and what you can do, and know that you WILL heal and you WILL feel better.  TIME + PATIENCE

[Dawn3]

Unfortunately things are not improving as I hoped. After slowly reducing my beta blocker over a few weeks, I am now back to my previous dose of 25mg (which I was tolerating okay before). My fatigue has only been getting worse. I’m sleeping 12 hours with no sense of feeling rested; the fatigue is truly crushing and I’ve had to stop the little part time work I was doing. I’m in a fog most of the day, but there is a shift often in the afternoon/evening when it’s almost like the fatigue fever breaks and I feel exhausted from all day of being exhausted. I am barely getting myself out of bed. If it wasn’t for my parents, I would not be able to perform basic functions. In the afternoon/evenings there may be a short window where the fatigue lifts, but I am hit with a woozy/head spinning/unwell feeling. I’m also experiencing increased tremor (internal tremor?) in my right leg) and even walking a few steps my legs feel shaky. 

 I’m having a consultation with Mark Horowitz in late December. I am starting to wonder if I should updose the Venlafaxine. I’m tentative to do so, because I think all of the changes may be contributing and I think there’s a risk of making it worse by doing so. I don’t know if waiting to speak with Mark Horowitz in about a month would be too long (I know there is somewhat of a short window for updosing/re-instating). 
 

@Jane318 @LotusRising appreciate any insight you have.

[Jane318]

@Dawn3 - It's only been a five or six weeks - in mid-October - since you updosed to 122.5 mg after a too-fast taper.  At the beginning of November, you reported that withdrawal symptoms had improved since you updosed. That indicates that the updose was sufficient to mitigate the withdrawal.  It can take months to stabilize after reinstatement / updosing.   It may seem logical that if you increase again recovery will go faster, but that is not necessarily the case.  And as you said, you run the risk of making things worse.  You've been through a lot of changes in dose / medications.  So  I would continue to hold at 122.5 mg if I were you.   That said, only you know your body, and this is your decision.  And if Dr. Horowitz advises you to updose further. I doubt it will be too late to do so.  

[Dawn3]

I will definitely wait to make any changes until speaking with Dr. Horowitz. Is re-upping a dose the same and re-instating, in that there is only a short window to do so? I know we don’t have clear answers for these things and that it depends person to person. 

 

I reupped my dose mid October saw improvement within a few days (withdrawal went from severe to moderate), but shortly into November (looks like I wrote On the 5th that things were declining) my symptoms are now back to severe. I do track my symptoms/any changes daily. I notice a pattern throughout the day.

12pm -start to wake up (extreme fatigue, mental and physical - more than just feeling tired)

12:30pm take meds 

1pm - with help get dressed, brush teeth, go downstairs using stair lift). Manage to eat something 

2pm - mental fatigue lifts a little, but physical fatigue brings me back to the couch to rest 

3:30pm some internet time, but if I do too much, it makes my head spin

4:30pm “chest nausea” is what I call it. Tightness and queasiness. 
-sit outside sometime in the afternoon if it’s nice 
6pm rest again, overstimulated, spinning, shut down fatigue 

7pm dinner, maybe that with parents, less mental fog

9pm get ready for bed - this is probably when I feel my best. Least fatigued, least chest nausea and possibly less weakness/tremor

fall asleep between 11:30-1pm

 

Obviously it varies slightly. I try to sit outside in the afternoon if it’s not too cold, but I can barely walk. I have a pretty consistent feeling of weakness in my limbs (more significant in my right) and tremor in my legs (mostly right) consistently throughout the day. My friends, family and doctors would like me to try walking a little because they worry deconditioning is making my situation worse. So I tried just walking around in my living room, but I experienced a surge in my cardiac symptoms (shortness of breath and a severe chest tightness), I had to go straight back to the couch.

 

I had been previously taking fish oil and magnesium, but am afraid to add anything right now as that would be another change.

 

I am barely functioning, waking up only enough to eat and can barely take a few steps. My parents are my full time caretakers. I’m in my 30’s and worried this is what the trajectory of my life will look like. 
 

I’m sorry if this is all jumbled and repetitive. Just wanting to write everything down. 

[Jane318]

8 hours ago, Dawn3 said:

Is re-upping a dose the same and re-instating, in that there is only a short window to do so?

@Dawn3 - Technically, reinstatement is when you have stopped taking the drug for a period of time, then re-start at a small dose to help alleviate withdrawal symptoms. Updosing happens when you go back to a previous dose after tapering too quickly.  "Reinstatement" is often used for both cases, which can be confusing.  Usually, it is clear from the context which situation is meant.  Reinstatement predictably works up to 3 months after last dose.  It is best to reinstate as soon as possible after withdrawal symptoms occur.  That said, it can work much further out, too.   I am unaware of similar rule-of-thumb for updosing, which is what you are considering.  Intuitively, it seems the longer you are at the lower dose, the more your body is slowly adjusting to that dose.  In either case, you want to take care to no updose too much.  

 

Thank you for sharing your log.  You are indeed suffering a great deal, but this is not permanent.  In general, many people, including myself, have a tough time in the mornings but things improve as the day progresses.  @LotusRising may have additional insights.

[Jane318]

How are you doing @Dawn3?  Wishing you the best for the holidays.