Kristinhopes: completely lost, what to do now - taper, reinstate, switch

[Altostrata]

19 hours ago, Kristinhopes said:

The movement disorder began when updosing the Prozac to 20 mg , or at least the tongue twitch but went away for two months after the decrease to 8 mg

 

19 hours ago, Kristinhopes said:

Twitching started and again when updosing from 7.4 to 7.68 for a couple of days a couple months later. Since then it’s stuck around with a couple week break. For that reason I think the movement stuff is prizac related.

 

Yes, this is what we mean when we say your system is sensitized to the drugs. Note that the movement disorder is from increasing the drug, not a withdrawal symptom.

 

If you're still getting the twitches, you could be still sensitized to whatever amount of Prozac you're taking now. It could be that no adjustment of the Prozac will help the movement disorder because the drug is causing it. If I were you, I would stop updosing Prozac when you get nervous.

 

If you haven't been getting withdrawal symptoms from reducing Prozac, I would continue to reduce it.

 

We cannot tell you how to treat the movement disorder, we don't know. A benzo is our best guess. You might see a neurologist for it.

[Kristinhopes]

I have not updosed despite withdrawal  symptoms since I do see this being an adverse effect. Instead I tried decreasing by 8% and while the twitches went away a few weeks they did come back plus I was experiencing withdrawal from the slight decrease which is why I feel stuck. I can’t make any moves on the prizac and it’s causing td so that’s why considering switching to a different medication . I’m kind of in a lose lose situation. I do have a neurology appointment in a couple weeks. 

[Altostrata]

1 hour ago, Kristinhopes said:

I was experiencing withdrawal from the slight decrease

 

What were your withdrawal symptoms?

[Kristinhopes]

10 hours ago, Altostrata said:

 

What were your withdrawal symptoms?

Sporadic Dark and ruminating thoughts, a couple semi brain zaps, a couple dizzy spells, a couple panic awakenings, more cortisol awakenings, more muscle twitching through body, increased constant depression, fatigue , few times of feeling like I was losing my mind and a few times of feeling like the burning restless akathisia feeling was beginning again. They started two weeks into decreasing from 8 mg.  The things that’s been constant since is the severe depression and muscle twitches throughout body and cortisol awakenings . 

[Kristinhopes]

I forgot to mention severe head pressure and brain fog waxing and waning as other withdrawal symptoms. Don’t think it’s a wave based on the timing of mg last decreases and the addition of fatigue. Last couple days symptoms it’s just been muscle twitching , bad anxiety, severe depression ... and odd tongue sensation , especially at night.. but only a couple twitches .. my face tremor/ lip quiver  is constant but only in certain positions when using and activating my and lip face muscles and it’s really only noticeable to me because I have to hold certain mouth movements a few seconds. It does not do it at rest. The tongue twitch can happen at rest though. Lots of twitching throughout body too which could be td or withdrawal. 

[Kristinhopes]

My Body  has been twitching almost constantly I’m various spots. Night time is worse and have internal vibration and then wake up at 530 I. Almost a panic state feeling of high blood pressure, internal vibration that no meditation can solve, aches, . Is this from my small decrease of Prozac last month? Or the stress of the twitches and not knowing noir I should switch?  Or adverse to Prozac? I know no answer but I can’t do this. I am in utter hell. I can hardly breathe. The suffering is unfathomable for most. 
 

do I keep tapering despite this because of the adverse symptoms ? I feel so desperate to get this Prozac out of my system. But don’t know the lesser of two evils 

[Kristinhopes]

I’m not going to be able to do this. If it was just withdrawal I could stay hopeful but I’ve lost all hope with the td symptoms because now I am stuck in a never ending loop of should I get off this medicine to prevent worsening td or stay the course? Today I can tell would have been a window but instead I am horribly depressed and anxious and I think it’s related to the utter hellish conundrum I’m in that is in addition to trying to stabilize and withdrawal (adverse effects) but also know my other two options  (withdrawaing much faster or switching meds) could significantly worsen things. I will never be able to stabilize because of the added stress thinking from the td. It’s like my body is going into shock from the stress.  I feel like my life is over . I’m not ending it because I have a young child , but that is how it feels. That actual living part of life is over. I have joy in nothing. Utter trapped and smothered despair. I can’t focus on positivity and hope and windows when in the back of my mind I have a nagging thought that staying on will give me irreversible td if it has not yet. I see nobody in all of survivingantidepressants who faced this specific dilemma. If they did they came off quickly. This leaves me feeling very lonely and hopeless. Trapped 

[Altostrata]

Kristin, you are in the midst of an adverse drug event. You will eventually get out of this.

 

Unfortunately, there are many unknowns in these things. We have given you some suggestions.

 

When will you see the neurologist?

[Kristinhopes]

12 hours ago, Altostrata said:

Kristin, you are in the midst of an adverse drug event. You will eventually get out of this.

 

Unfortunately, there are many unknowns in these things. We have given you some suggestions.

 

When will you see the neurologist?

March 25th. I’m supposed to get my covid vaccine next Friday. Nervous about that too on my already stressed body. But getting covid would also be bad on it.

[Kristinhopes]

Well I decreased from 6.8 to 6.4 today.  Not sure if what I have still going on is withdrawal wave, personal anxiety, or adverse effect but i have an appointment with psychiatrist in a little over a week and neuro in three weeks. Probably make my decision about switching or not after neuro visit and to see how this decrease effects me. I think one big jump has seemed to work better than brass monkey method for me in the past . We shall see. The stress of this decision is too much to bear though. I am incapacitated almost. I don’t care if I have to be on meds forever at this point . I just want to get better and hopefully not have td. Wishful thinking.  I want to taper off but I’m losing the inner strength from this dilemma. Not switching to a new med just yet. And I know there are no guarantees with new switch so stuck. Will report back after neuro , psycho and a couple weeks to see how this decrease effects me. It’s such a beautiful day outside... if only I could see it , feel it, live it. 

[Altostrata]

Please stop adding worry about what you're missing to your drug-induced problems. Keep reminding yourself you will get through this.

 

If I were you, I would ask your psychiatrist about reinstating your clonazepan prescription for the movement disorder.

 

Yes, I would get the covid-19 vaccination. Most people barely feel the first shot.

[Kristinhopes]

Lesser of two evils... coming off this Prozac fast or switching to a new med? I don’t suppose you guys are keen to advise that. So ignore if so. I think I may have a stroke or heart attack if I continue trying to do what I’m doing.  The depression and stress are too much.  My chest has been hurting constantly and extreme panic all day every day but especially mornings.  Or perhaps they are all hopeless options. I don’t think I can live through years of trying to taper Prozac when I can’t stabilize and also don’t have time to let myself stabilize due to adverse effects. The anxiety of it all is too much when having an adverse effect on top of the withdrawal. It is making me feel like there is no way out. 
 

i have seen hesitant advice of if it’s too hard to taper to switch h to prizac only in my case I’d be switching from Prozac. Is this not similar? Also is it possinle to stabilize on a drug you have pooped out on? I’m just desperate to stabilize but not on something causing me horribly disconcerting symptoms that make me want to throw up and have a panic attack every time I think of them. I feel violated when I see the quivers. I feel ashamed and traumatized from it 

 

this added layer also makes it hard to know when I am stabilized because for example this past week I have not had brain fog and feel that I would be in a window possibly but instead because of the td and unsure what to do I am

instead very stressed and anxious and having constant panic and severe depression . I am also having difficulty sleeping and severe cortisi adrenaline high blood pressure panic awakenings, but again, is this because of the stress I’m under it because I am not stabilized? The severe twitching... is it withdrawal or td? Again there is no way for me

to know whats

what which makes a

two year stabilize

amd taper basically impossible without the stress of it all killing me first. 

[Clairest]

It is difficult to keep taking a drug when you cannot endure the effects you feel it is causing. I can totally imagine that.

 

Because I was also taking fluoxetine (generic Prozac) for a few months lately, and I also thought it was causing all the bad symptoms I suffered. My psychiatrist thought that possible also. We agreed that I would take half the dose for one week, to see if symptoms improved (which could have happened after five days, since the half life of the drug is five days, according to him). But the symptoms did not change a single bit. I used up all the perseverance I could work up, during that one week, continuing the drug which I believed was causing all my misery. So I stopped taking it after that week. Symptoms still did not change a bit, still haven't, not due to stopping fluoxetine.

 

Fluoxetine does not cause withdrawal as much as other SSRI drugs. And when you have used it for only months, not years: there is even lesser chance of experiencing severe withdrawal. And yes, that is why sometimes people switch to Prozac, before tapering, to make withdrawal less severe.

 

So I could understand when you just want to stop the Prozac. But you cannot know whether the tongue twitching will subside. You don't know. In my case, stopping the fluoxetine did not make any difference at all.

[Kristinhopes]

12 minutes ago, Clairest said:

It is difficult to keep taking a drug when you cannot endure the effects you feel it is causing. I can totally imagine that.

 

Because I was also taking fluoxetine (generic Prozac) for a few months lately, and I also thought it was causing all the bad symptoms I suffered. My psychiatrist thought that possible also. We agreed that I would take half the dose for one week, to see if symptoms improved (which could have happened after five days, since the half life of the drug is five days, according to him). But the symptoms did not change a single bit. I used up all the perseverance I could work up, during that one week, continuing the drug which I believed was causing all my misery. So I stopped taking it after that week. Symptoms still did not change a bit, still haven't, not due to stopping fluoxetine.

 

Fluoxetine does not cause withdrawal as much as other SSRI drugs. And when you have used it for only months, not years: there is even lesser chance of experiencing severe withdrawal. And yes, that is why sometimes people switch to Prozac, before tapering, to make withdrawal less severe.

 

So I could understand when you just want to stop the Prozac. But you cannot know whether the tongue twitching will subside. You don't know. In my case, stopping the fluoxetine did not make any difference at all.

Thanks . I do understand  it may not help but it would at least ease my fears I was making it worse by staying on it longer. But then I’d have acfurthercdysreguksted nervous system and withdrawals  

[Kristinhopes]

Are there no allergy meds we can take? My seasonal allergies are severe. I’m worried they are also going to trigger my asthma and result in me needing steroids. Once again stuck! 
 

also how do I tell the difference between morning cortisol spike versus akathisia that dissipates as the day goes on? Is twitching from either of these typical? Having a hard time deciding if the body twitching could be td or the other things I just mentioned, I remember when I came off Zoloft last time I had a lot of twitching but maybe not quite as much.. I also was not having the cirtisol surges in the morning , just worse depression in the morning, but these past 6 months my surges feel more severe and tremor and twitch and panic and doom and high blood pressure. 

[Kristinhopes]

I’m also prone to sinus infections so I have to get this under control. I am completely stopped up, runny nose, itchy eyes, cough and itchy throat, face pressure, plugged ears, utterly miserable

[Shep]

Please see:

 

Allergies, sneezing, stuffed up, nose, sinus - antihistamines and what to use for allergy relief

 

If you haven't already, you may want to try holistic treatments such as a netty pot. I've used China Oel, which is a very potent peppermint oil, and you can find more tips for holistic treatments by researching on the internet. 

 

 

[Shep]

Kristin, I also want to give you some resources in case you do end up needing to treat a sinus infection, especially if it involves antibiotics. 

 

Because of your history of benzo use, please be cautious of the fluoroquinolone antibiotics, as they affect the same receptors cites as benzos. Many people have severe setbacks. 

 

Hidden dangers of fluoroquinolone antibiotics in the benzodiazepine-dependent population 

 

Here's a list of the fluoroquinolone antibiotics which should be avoided if possible during withdrawal and well after: 

 

Fluoroquinolone antibiotics

 

Here is the thread on SA about antibiotics that may be helpful:

 

Cipro, Levaquin, Azithromycin (Z-Pack), and other antibiotics

[Kristinhopes]

Unfortunately I am going to have to take a nasal spray and antihistamine. I will do lower doses than my usual yearly protocol but this mucus is already settling in my chest which is when I get asthma and also sinus infections so I’d end up on steroids and antibiotics either way. Yet again no good options. I no did a saline rinse and it did not help

[Kristinhopes]

After taking a children’s dose of Allegra last night (and having anxiety and insomnia) and a half dose of Flonase this morning (and having more anxiety and disconnect and panic) my tongue started twitching after not doing it about 10 days of not twitching and this one in a new spot

more in the middle rather than side. Freaked out and dont

know what to do. My allergies are so severe I literally can’t function without taking something and they’d trifffer my asthma and sinus problems. I know there is no good answer. Feeling further trapped and there is no way out of all this mess. 

[ChessieCat]

Flonase is a corticosteroid.  There is/are alternative/s.

 

On 2/2/2014 at 6:14 AM, Altostrata said:

I have allergies which have been bothering me a lot -- sneezing, itchy nose and throat, nasal congestion, coughing, etc.

 

Being hypersensitive, I can't take antihistamines. My ophthalmologist told me to minimize steroids (Pataday eye drops, Flonase nasal spray, etc.) because they increase risk of glaucoma. Plus, recently, I've become hypersensitive to steroid eye drops.  UPDATE: Since 2012, I've changed to ketotifen eye drops and azelastine nasal spray -- they are non-steroidal. Steroidal drops and sprays can advance cataracts or glaucoma.

 

So I finally tried nasal rinsing with a squeeze bottle and pre-mixed saline packets. To my amazement, it worked! Cleared up the congestion and itching right away. This lasted for several days.

 

It was easy, safe, and inexpensive. Just make sure to use distilled or boiled water that's cooled down to lukewarm in case of micro-organisms in tap water. (There have been a few reports of serious infections from nasal rinsing using plain tap water.)

 

[Kristinhopes]

1 hour ago, ChessieCat said:

Flonase is a corticosteroid.  There is/are alternative/s.

 

 

The one nasal spray alto mentioned is an antihistamine. I thought those could pose a problem as well. Also, from what I can tell it is only prescription correct? I did the nasal rinse first but it didn’t touch my problem. At any rate, I am going to have to take albuterol too because my asthma is already acting up now. Any know problems there? I don’t have a choice though due to asthma attack possibility  I was on steroids my entire childhood unfortunately due to asthma and hospitaluzed twice for a couple weeks with pneumonia and a partially collapsed lung from it. The steroid growing up probably contributed to some of my mental issues leading me to being put on antidepressants as a young teen. Oh to go back in time.., okay now I’m rambling. 

[Kristinhopes]

In need of encouragment and support. I had been doing well since last posting here, had decreased by 6% with.m no symptoms, no tongue twitches, less depression, feeling hopeful. Then I got the covid vaccine two days ago. 1 dosr j&j. I was nervous because of the unknown around it and my nervous system. Well I got it and suddenly felt nauseas. The next thing I knew I was surrounded by nurses working on me as I laid on the floor regaining consciousness from fainting  and hitting my head on the floor. I suddenly thought oh I am having a weird reaction and dying.I hear someone saying I hit my head hard.  It was traumatic.  I was very restless and tired and out of it after. However no outright showings of concussion. I went to urgent care who also did not seem concerned of brain bleed or concussion based on how I was reacting and reflexes. I was having akathisia type restlessness this whole time.., reaction, concussion, anxiety from the trauma? Who knows. They ran an ekg which was abnormal and decided to keep me overnight despite that same abnormal finding being there in January. I hardly slept that night despite being tired. I had a headache and neck ache and body aches but was inner restless and again not sure at this point of its anxiety, concussion, vaccine reaction, or the normal side effects kicking in. Cardiologist spoke to me the next morning saying it was not necessary for them to have kept me overnight . My ekg readings were there in January and they are not concerned about them especially since I had normal stress test and echo a month prior due to palpitations. I did ask if since this abnormality started after prizac if it could be the cause and she said no.., though I don’t know if I believe it. I was discharged and had a few waves of nausea and panic and like I may faint again that day. Impossible to know if it could be anxiety, head injury, vaccine reaction. I also went to neurologist yesterday ( a few hours after discharge since I had. I incidentally made this appointment a few months ago)  afternoon who was not convinced it was dyskinesia the twitching I had been having and supported slow taper off Prozac. While there she also had me do some evaluation and said she noticed some finger tremor but nothing too abnormal . She also stated like the other 4 doctors she did not think I had a head injury or that I needed a ct.. but she ordered one for my peace of mind. I’m still worried about what I’ve been reading about slow bleeds and concussions that effect bet it’s system dysrehuksyion later so will probably get ct .. though it would not show a concussion and since no longer under emergency team I can’t get it until Saturday . I was tired all yesterday and slept about 8 hours last night. I am still feeling a bit tired today, very slight head ache in area I hit my head, bump there too. My issue now I am dealing with is this whole experience had been traumatic and has completely set me back. I am very anxious and don’t know what is from what. I am dwelling  and spiraling and reading  about people who had strokes and blood clotting disorders and hemorrhaging after the vaccine. I am reading about people with increase chances of strokes from microbleeds that would go undetected by a ct... which I have not had a ct anyway at this point.. and of course since I feel I have nervous system dusrefulation already I fear it worsening from either a vaccine reaction or undiagnosed concussion. I am basically reverting g to my old spiraling and ocd and worst case scenario thinking, though I did have a lot of trauma lately to cause this and making it hard to tell what is vaccine, could it be head injury, could it just be anxiety. I know nobody knows for sure.. but this has been a big setback for me. I am 48 hours post vaccine and fall. I do believe my fainting was not from anxiety, but a reaction to the shot itself, though others may think otherwise. I have never fainted or felt

that way before . I could feel something physically happening to me after getting it. so that scares me about the possibility of what reactions are to come and since I had a rare reaction wil I be one if

tjose people to have a stroke from the vaccine confounded with will I be one of

tjos epeople to have a microscopic brain bleed that causes a stroke.

I do regret getting the vaccine, my anxiety is worse and not sure if it’s from vaccine, brain injury, or Just the trauma of everything or combination.. and I am so sad and anxious and fearful by this setback. Maybe in two or three weeks from now if I’m still alive from no strokes and stuff  and not declining then I will have less anxiety anout everything but the next three weeks at least  I will be hyper aware of everything and worrrird and dwelling about everything. I’m just scared. What a mess. What a year. I feel so defeated by this whole freaking year . Just fed up and tired and sad and scared. And mad. One step forward and three steps back.  I keep having weird feeling and panic attacks and just don’t know what is happening or causing. Scared. 

[Kristinhopes]

I am now having constant debilitating worse anxiety and constant panic attacks. Pretty sure it’s either concussion or vaccine related. Praying no permanent danger but terrified. 

[Kristinhopes]

Back to doctor for mri today . No brain bleed but worsening head pressure and headaches and anxiety and fog.. likely concussion unless done weird vaccine reaction. Hopefully I will recover but it will likely be harder and take longer given history of anxiety depression and neurological issues. Need to continue tapering because of dyskinesia but completely obviously setback here. I don’t feel like myself and can’t think straight. So sad about this. Hopefully I will recover 

[Kristinhopes]

6 days out from fall and doctors and I think it was a concussion based on continuing symptoms which means I’ll put a hold on my taper for at least a month despite dyskinesia and I don’t know ho or if I will heal from either since I have both horrible things going on ( a sensitized nervous system and now a concussion messing up my brain and nervous system too) and maybe a vaccine reaction too. Scared

[Kristinhopes]

I give up. The anxiety and depression from my brain injury on my already fragile brain is too much. I no longer have that strength and fight that kept me going. I can’t think straight and am more impulsive and even less hopeful. I guess I’ll need to try a new med because I am doing very poorly mentally and I am just so confused and traumatized. And now knowing I had a reaction to a vaccine they are stopping. It’s too much for me. I obsessive thoughts are in overdrive. I suffer severe impulsive rage and depression and anxiety and panic. 

[lucidity]

Are you taking any magnesium?

https://www.nyheadache.com/blog/post-concussion-syndrome-responds-to-intravenous-magnesium/

 

magnesium glycinate may be the best one for someone in your condition.  Glycine by itself might be worth looking into also, as it shows some promise not only with tbi (concussion being a mild form of this) but with anxiety and sleep.  It has on many occasions destroyed my panic attacks (at about 2g under the tongue) though it does take a while to start working.

 

It's a glutathione precursor

https://www.researchgate.net/publication/333490311_Glutathione_precursors_shield_the_brain_from_trauma

 

Best of luck... I'm in distress most of the time myself :/

 

[Kristinhopes]

Y brain was already damaged from meds and now further damaged from a tbi a little over a month ago. In this case my depression and anxiety (and of course other symptoms) are ten fold. I read it makes it even harder to heal from tbi if depressed which not only was I severely depressed but struggling with withdrawal and adverse effects. For brain injury , is all advice off the table now ? I am thinking about throwing in the towel and trying another antidepressant. All my coping mechanisms and even ability to do the exercise I loved are gone . I was at what I thought was my lowest and then went and had a tbi after fainting from a vaccine reaction. Add to that I am passing up a dream job opportunity because of my current situation. This works has become a dark and scary place for me . I don’t know how much lower I can be kicked dowb

[HealthHopeHappiness]

I am so sorry to hear what a nightmare you have gone through since having your vaccine. No wonder you have had such a set back, not only from a physical reaction to the vaccine itself but also your head injury. Even someone not going through withdrawal would be struggling. How are you doing now? 
 

I have been in a terrible wave ever since getting my vaccine in April. Second one due next weekend and dreading it! 
 

Hang in there, I know it’s hard. 💕

[WiggleIt]

Hello @Kristinhopes:

 

Sorry for such a long delay before I replied. You posted on my thread asking about bladder and pelvic issues. Are you still dealing with that? 
 

Love,

Wiggle

[HealthHopeHappiness]

Hi @Kristinhopesi just wondered how you are doing now? I can relate so much to your thread in terms of the physical symptoms but also as I am a teacher and have a toddler and I know how hard it is trying to keep going. X 

[ThatOneGirlStitch]

Hi, I just had the exact same issue you had at the urgent care. Did the Zofran have no effect? I’m hoping you’re doing alright 

[Lilly998]

@WiggleIt ur success story is Great !! But does it take so long to recover physically it took u 7 years and yet no physical imrovements ? 

[TrazodoneShouldBeIllegal18]

@Kristinhopes I just read your post in 2021. I am have been going through nearly identical symptoms and issues as you. Feel free to ask me anything. I d like to follow with you and see how you are now.