hoping21: adverse reaction & cold turkey, feeling lost

[hoping21]

I'll try to keep this kind of short. I've finally decided to post an intro today after reading posts on this site for a few years now which has helped a lot with understanding what's going on since most doctors just told me my SSRI discontinuation/withdrawal symptoms-which were unlike anything I'd ever experienced before and physically and emotionally worse than I'd ever felt-were a return of my depression & anxiety or possibly a bipolar disorder according to one doctor. I knew for a fact that it was not my original anxiety & depression, but I had no idea what was happening in the beginning or how to explain it. 

 

I had social anxiety, depression, & general anxiety since age 12 and was not allowed to drive/take the bus/go out or do much by myself other than going to school (because everything was too dangerous) by controlling, religious parents with their own high anxiety and agoraphobia.

 

I was never allowed to receive counseling for these issues & when I went off to college, it was an extremely difficult struggle going from not being allowed to do almost anything to suddenly being responsible for figuring everything out on my own. I was also not great with time management skills & knowing how to plan ahead. (I actually relate to a lot of symptoms of ADD & Asperger's, which both greatly affect social skills & ability to get through college and would explain a lot of problems I've had. I have learned more about them in the past year, but can't afford to get diagnosed right now so I've just been looking at support groups for days when my nausea is lessened.)  I felt overwhelmed all the time and all my negative thoughts worsened severely. I didn't see the free counselor at college during this time either because I was embarrassed about everything and about asking for help.

 

I finally decided I wanted to try to make a change and try counseling the summer after sophomore year of college at age 20 and was at rock bottom, desperate to not feel depressed. I knew someone who said their antidepressant helped them, so I asked a doctor for medicine and they prescribed sertraline.

 

After taking the first pill, I had a surge of anxiety and racing thoughts that made it impossible to concentrate. Within the first couple days on 25 mg of sertraline, I was gagging and dry heaving over and over for at least 20 minutes as soon as I ate anything. I would also throw up multiple times in a short timespan after one snack or meal. I called my Dr & was told to skip a dose and then change the time I took the dose from morning to night. After a week of this (dry heaving & vomiting all meals) on 25 mg, and another call to the doctor, I was told that digestive issues are a possible starting symptom and to increase to 50 mg. As soon as I increased, the gagging & vomiting increased even more. After 6 days of this, I called the doctor again and was told I could stop taking it altogether since it had been such a short amount of time on it. And to come in for a different medicine Rx after the weekend.

 

The very first day that I didn't take the sertraline, I felt the worst nausea I had ever felt in my entire life. I ended up asking a friend to drive me to the ER because I felt so sick. I told the Dr how I had just stopped sertraline. The doctor said that my pupils were dilated and my reflexes were overactive. Then, he listed off illegal drugs & asked if I had taken those. (No, I've never tried any drug before). He said "You need to tell me what else is going on because the antidepressant couldn't have caused this." And I said "I don't know" and started crying. I do know that people in my family are highly sensitive to medicines and have since found out I have a gene that causes me to metabolize slowly so things build up for longer in my system. Anyway, the Dr left the room and at one point I was given Ativan in an IV by the nurse which did ease the nausea. When the Dr came back, he told me I had SSRI discontinuation syndrome, (he didn't explain what that meant), that I could never try another SSRI, and gave me a Rx for a small bottle of Ativan. My mom said he mentioned something on the phone to her about serotonin syndrome which dilated pupils and overactive reflexes are symptoms of, but I don't remember him saying anything about it directly to me. He also mentioned reinstating a small amount might help but my mom didn't pass this on to me until much later because she didn't want me to take it. 

 

After that, I experienced:

 

-more dry heaving which gradually lessened in frequency

-random times of vomiting after eating and after exercising when I wasn't sick & the food wasn't bad (or sometimes nothing was left to vomit & only a small amount would come up)

-continuing debilitating nausea & dizziness

-olfactory hallucination (putrid smell that wouldn't go away, would intensify around strong scents such as soap & car exhaust)

-uncontrollable crying at every tiny thing (neuro-emotion, not regular sadness)

-uncontrollable rage (neuro-emotion)

-intrusive thoughts & floods of bad memories which I "word vomited" in texts to my sisters

-didn't want to be around people who I associated with bad memories because it would greatly intensify neuro-anxiety. (I'd guess the feeling is similar to what people mean who talk about experiencing bad drug trips and how it's important to be with people you  trust)

-nightmares

-paranoia/suspicion/distrust (felt like my mom & sister were not really my mom and sister even though logically, I knew it was them. Things feel creepy & sinister -almost like a horror movie sometimes. A post I read here compared the sinister feeling to a bad LSD trip. I have never tried LSD, but I understood what they meant & is the closest way I found to describe it.

-cognitive fog (thinking, processing speed, & reaction time is noticeably slower) (I was a slow thinker/processor before, but it feels like I have brain damage now)

-memory problems (I was somewhat forgetful before, but am even more so now)

-depersonalization ("it feels like the medicine changed who I am & I don't have an identity/sense of self which I still hadn't fully formed before sertraline)

-derealization (feel emotionally disconnected & distant from people/atmosphere. I know things are real, but they don't feel real. Sometimes it feels like consequences won't matter or there is no sense of helpful anxiety even in a potentially dangerous situation. Logically, I know they do matter and still want to do the right thing)

-anhedonia/apathy/emotionally numb (don't care about things or have the same amount of passion for interests or feel empathy for other people's emotions or feel spiritual even though I had some spiritual beliefs before. Couldn't feel hopeful about anything/future or feel love towards or from anyone. These emotions have slowly returned to a certain degree since then & levels of ability to feel them have changed at different courses of time)

-blurred/cloudy vision (when DR was at most intense, vision was different. Hard to explain)

-eye floaters ( random black specks & lines) Didn't notice these until a year after DC-ing 

-constant yawning/air hunger

-stomach/digestion issues

-burning, tingling, itching, numbness, redness in feet

-brain zaps/"crackles" (sometimes annoying, sometimes painful, but my most tolerable symptom)

-head pressure/tightness, feels like head is being squeezed

-headaches

 

There was also a period of 6 months where I thought certain symptoms were over and after that period, the dizziness returned.

 

Those are most of the symptoms I've experienced in the past approx 3.5 years.  They're not in order. I'm 24 now. A few have gone away for the most part (vomiting, olfactory hallucination, yawning) and most are less intense. I have really improved a lot, I don't mean to sound overly negative. But, I still have the issues I went on the SSRI for & I have trouble accepting where I am & worrying about where to go from here & the uncertainty of how long this lasts because it has put lots of areas of my life on hold (I wasn't able to go back to college, I hope to someday) and ended up making things harder to deal with when I was told it would make them easier. (BTW, I am now seeing a counselor). I don't understand why people say SSRI's are not technically drugs when they have this much of an effect on your mind, mood, & perceptions.

 

Sorry if I have over shared, I might need to post a shorter version of this at some point that's easier to read. And I'm still figuring out the layout of the website & where to post about certain questions & topics. I just know that sometimes other people's explanations made me feel better because I had some understanding of what was happening & words to describe feelings I'd never had before and didn't know how to explain.

 

I've also had other stress & health issues and a few (physical health) medicines that have affected my withdrawal progress, but I guess that's a topic for a separate forum.

 

Any advice, similar experiences, recommendations, tips for using the site, or insight into what happened to my brain is appreciated if anyone feels so inclined :)

[Gridley]

Welcome to SA, hoping21.

 

You had an adverse reaction to Sertraline, and the symptoms you describe are very typical of an adverse reaction.  An adverse reaction means the drug Sertraline was like poison to your central nervous system.  Doctors know nothing of adverse reactions and typically will diagnose, as your did, a "return of the underlying condition."  This post by Brassmonkey, one of our moderators, explains what happened to you:

 

But I only took it for a Week

 

I think that some of the most unfortunate members we have are the ones who only took the drug for a short time and had an Adverse Reaction. Over the years I’ve seen a good number of members join who have taken their drugs for one day to a week and then stopped.  Yet they are suffering very acute symptoms.  This is an Adverse Reaction, acute symptoms that hit immediately and hard.  Some people’s chemical makeup just isn’t compatible with psych drugs and their body immediately tries to reject them, but in doing so throws itself into chaos.

 

The good news is that their body will sort itself out and they will return to normal.  The bad news is, it’s going to take a long time and there is nothing that will speed up the process.  There are a lot of coping strategies and tools that will help soften the experience, but time is the only thing that will cure it.  By time, we are looking at a minimum of eighteen months, but more than likely two to three years for a full recovery

.

That may sound very bleak, but it’s not going to all be pain and suffering.  These people tend to have a more linear recovery. The first several months will be acute.  Then things start to improve is a noticeable manner, with life starting to resume and get back on track.  All the members I have known have made full recoveries.  They then go on to graduate college, attend med school, and start successful careers in a variety of fields.

                                                                                                     ---------------

 

It is very encouraging that your symptoms have improved, and, from what you've written,  you are well on the way to full recovery from your adverse reaction. You're well past the acute stage.  

 

The symptoms of an adverse reaction are similar to those of antidepressant withdrawal, and you will recognize many of your own in the following link:

 

Daily Checklist of Antidepressant Withdrawal Symptoms (PDF) 

 

Regarding the symptoms that led you to take the Sertraline, we recommend non-drug techniques.  Counseling and non-drug therapy might also be helpful.  Take a look at the links in the following link and see which techniques you think might be helpful for you.

 

Non-drug techniques to cope

 

The following techniques are helpful for anxiety.

 

Audio:  First Aid for Panic (4 minutes)
 

CBT Course:  An Introductory Self-Help Course in Cognitive Behaviour Therapy
 

Audio:  How to Recover from Anxiety - Dr Claire Weekes
 

VIDEO:  Peace from Nervous Suffering - Claire Weekes (1 hour) (http://sendvid.com/vgquc1dg)
 

Anxiety Stuff - all kinds of stuff about anxiety attacks and things that help …

 

10 minute Restorative Yoga for Relaxation | Up the wall

 

This is your Introduction topic, where you can ask questions and connect with other members.  We're glad you found your way here.

 

 

 

 

 

[hoping21]

Thanks for your reply and links, Gridley.

 

This is (mostly) a personal update for me to keep track:

 

I'm doing worse physically due to a number of things. A couple years ago, I had the worst bout of flu (diagnosed at ER) I've ever had that lasted for a month-temp over 105 F, excruciating migraine (I've literally never had one before this except for one time when I was 5) & left me extremely weak (I couldn't stand up to walk) and fatigued. It also caused me to develop vocal cord dysfunction which can be caused by a virus. But the doctors originally thought I had asthma since symptoms are similar so I ended up taking an Albuterol inhaler and because that didn't help much, added an inhaled corticosteroid which caused headaches and more fatigue. But I took it because I wanted to be able to breathe. A few months later I stopped and realized I was breathing better without the steroid.

 

Then, in March of this year, I developed a sinus infection with blocked sinuses, sinus & facial pain, ear pain, & the same severe migraine. The migraine was continuing for a month straight so I ended up taking Afrin nasal spray (which you can only take a few times) & the antibiotic Amox-Clav. I wasn't able to finish the course of antibiotic because it caused severe itching all over my body like fire ants were biting me and electric pins were pricking & shocking me. I'd had some itching, burning, and pins & needles from WD in my feet & legs before this but it was more numbed and not as widespread. I found out the antibiotic can cause pruritus (a 'sensation' of itching) as a side effect and is one of the most common side effects even though the Dr acted like it was unlikely when I told them I had to stop taking it because of the itching. She did prescribe a different antibiotic though which I didn't take because I was still itching severely after stopping the first one.

 

3 months Iater, I still have itching all over now, but not quite as severe as it was. Ice was the only thing that helped somewhat because I'm pretty sure it's my nerves that itch & not my skin. I've also been doing a saltwater nasal rinse to try and clear out my sinuses. But they still haven't cleared since March. And now I have crushing, stabbing, burning migraines almost every day. (I can also feel the brain zaps more now which might be part of what's causing the migraines since they can be affected by serotonin.)

 

I don't feel like I've been able to fully rest and recover from getting sick either because I've had to become a caregiver for my sister (who developed a medical issue) for the past 2 years. Thankfully, she has an aide part of the time now, but my mom & I are the only ones around when they're not here.

 

Is there anything I can take to help the migraines?

[Altostrata]

Hello, Hoping.

 

It sounds like you had covid-19!

 

Many people find fish oil and magnesium supplements helpful, see
https://survivingantidepressants.org/index.php?/topic/36-king-of-supplements-omega-3-fatty-acids-fish-oil/
https://survivingantidepressants.org/topic/15483-magnesium-natures-calcium-channel-blocker/

 

Magnesium in particular might help headaches, take in small doses throughout the day. You might try a little bit of one at a time to see how it affects you.

 

Also of interest

 

[composter]

Not sure if it would be COVID...Hoping says it was a sinus infection and doesn’t describe having the major symptoms of COVID like difficulty breathing or loss of taste/smell. 
 

How long have you experienced the migraines? Do you currently take any medications?

 

There’s a specific definition of migraine as a diagnosis as opposed to headaches. What are your migraines like?

 

I have a history of chronic headaches from having had several concussions and post-concussive syndrome. I agree that omega 3 and magnesium can be very helpful. Medication/mindfulness as well as heat packs or cold packs helped as well. I also benefit from gentle head massages which my mom or sister would give me. 
 

Often times finding tools that will help your headaches that are based in lifestyle rather than any medication should be the way to go. Sometimes headaches can be caused by a vestibular system dysfunction in which case it helps to see a physical therapist trained in vestibular-ocular rehab or a functional neurologist. 

[Altostrata]

Good point, @hoping21 could still have a sinus infection. Hoping, did you go back to the doctor to see if you have a bacteria infection? Sinus pain can cause a lot of symptoms.

[hoping21]

Sorry for the late reply. I haven't been able to do much & have basically been trying to sleep the migraine off which isn't working. Thanks for all your suggestions. I think I'll see if I can get someone to drive me to urgent care tomorrow to see if I still have a sinus infection. I'm pretty sure it's not COVID since I haven't had a cough or fever. I also had multiple x-rays of my lungs when the vocal cord dysfunction (which does cause difficulty breathing) started that didn't show anything abnormal. My taste & smell is probably affected by clogged sinuses. Kind of confusing though since I already have certain corona symptoms caused by other things. I'll see if a Dr can tell me what's going on.

[hoping21]

Hi again everyone,

 

Another (long) self-update & a couple questions.

 

To answer composter's question, it feels like my brain is being stabbed and crushed/constricted and sometimes throbbing. Noises are too loud and lights are too bright. And there's pain behind my eyes, in my sinuses, and into my jaw/teeth and neck/shoulders. My neck and shoulder muscles also feel extremely stiff, sore, and tight. And the brain zaps 'crackle' more. I bought a mouth guard so hopefully that might help to wear at night. Using ice on my jaw and head has also seemed to help some. And I take Omega3 fish oil daily.

 

The good news is the Dr said I don't have a sinus infection anymore and I was able to take an antibiotic that's reported to have less side effects. (Azithromycin if anyone is wondering/searching the site. I believe I read another poster's account here who also used this antibiotic with no ill effects.) I was also able to get a prescription of Azelastine nasal spray for allergies (thanks to Alto for suggesting this on another post as an alternative to the steroidal Flonase)

 

The bad news is I'm still having the same pain/issue. I have read that serotonin is involved in migraines and I'm pretty sure my serotonin levels are still off due to the worsened digestive problems, nausea, and derealization that I've had ever since Zoloft ADR and WD. I also have had the burning/tingling/numbness/itching under my skin/in my nerves after WD that people on here compared to peripheral neuropathy. Luckily, it isn't painful most of the time. But I think I also read about a nerve/nerves that run through your teeth, sinuses, and head so I wonder if that was affected somehow. Just speculating.

 

The WD symptoms and migraines also get worse right before, during, and right after my period so it could also have something to do with hormones. And I've suspected I might have endometriosis for a while which actually has a lot of symptoms similar to WD so that's confusing. A lot of women in my (extended) family have that & similar issues so I'm hoping to ask one of them about it and look into it with a Dr soon. Another confusing thing is that I take Midol with caffeine in it for the menstrual cramps, and I can't tell if it's the cramps causing menstrual nausea, the Midol/caffeine worsening the WD nausea, (I had a bad experience with Excedrin Migraine worsening WD symptoms during the flu which contains caffeine), the hormonal cycle causing the WD nausea severity to worsen, or some combination of all 3. I do have Midol without caffeine but for some reason, it doesn't seem to help the cramping pain as much as the one with so I only use it on the days that the pain isn't as bad, usually later on in the week.

 

I also know that stress can cause migraines and some other life circumstances have definitely been contributing to that.

 

Apologies, this is getting longer than I planned but I did have a couple questions:

 

1. Is it really possible to get new WD symptoms so far out if that's what this is?

 

(It's been 4 years since I took such a small amount of pills. I have taken some other medicines in that time -some unnecessarily unfortunately- but none of them were depression/anxiety medicine) and while I have had WD nausea that whole time, it seems like there was a point where I was doing better and I thought I was improving. And now, it's almost like new physical symptoms are replacing old 'emotional' symptoms (which did disappear/return to baseline for the most part it seems.)

 

2. The doctor prescribed me Imitrex for the migraines which I haven't tried yet but I just found out it is a selective serotonin receptor agonist. (the opposite of an SSRI??) And I didn't have good results with my serotonin being inhibited on the Zoloft or whatever happened serotonin-wise when stopping. (also the opposite of being inhibited?)

 

I searched the forum for Imitrex and couldn't find an answer for this if there is one: My question is does anyone know if that means it will just cause the same bad side effects I've already experienced and would rather not worsen/go through again?

 

3. I'm pretty sure the doctors want you to try birth control pills if endometriosis is suspected before they'll refer you for surgery & surgery is the only official way to diagnose it. I don't really want to take another medicine that can cause depression & mood swings if it can be avoided and am concerned about how it could affect the WD progress that I've made.

 

Does anyone have suggestions for a birth control that has the least amount of effects or experience to share with how it affected them in WD if they were taking it? Or experience with endometriosis in WD? 

(I found a thread by one person a while ago but I haven't been able to find it again)

 

Links also welcome if I'm accidentally asking questions that have already been asked/answered in another thread

 

 

[composter]

Hi Hoping.

 

I‘m sorry that you’re having such troubling symptoms after nearly 4 years since taking an SSRI for a short time. A lot of what you’d describe including symptoms reminds me a lot of my own experience in withdrawal. Incidentally, I also have had vocal cord dysfunction from a viral illness when I was a teenager (my voice is still kind of crackly sounding though I’ve gone to speech/voice therapy).  
 

To answer your questions:

1. Yes unfortunately it’s possible to have symptoms for years after. This is called PAWS or post-acute withdrawal syndrome. And there are many stories of this on the site. As far as why your symptom pattern seems to be changing, consider the phenomenon of windows and waves that happen to all of us. It’s possible that your CNS is undergoing a paradoxical period of healing where the symptoms get worse before they get better. Have you seen a pattern of windows and waves lately?

 

2. Oh brother. My neurologist prescribed me Imitrex when I was suffering from withdrawal and it sent me into a horrible bout of fright and suicidality. I strongly feel this is not the right drug for anyone experiencing withdrawal or sensitive to medications like you are. Immediately after taking half a dose of Imitrex I was overwhelmed with a deep sense of doom and laid awake for the whole night in tears that the sun wouldn’t rise the next day. In the morning my body reflexively vomited it out. 
 

As I mentioned earlier you would do well to try to address your current issues with non-drug tools. Within your means if I were you I would seek out acupuncture to calm the nervous system (make sure to specify you do not want stimulating acupuncture but instead want calming points). I would also try to get my nutrition in order by cutting out migraine/inflammation causing foods. For many people they feel better cutting out dairy and gluten to improve migraines. I’d work on building a strong support system and also doing some gentle exercise every day like walking. 
 

3. Some members report changes to symptoms around the time of their period. There may be a hormonal aspect. Why do you suspect endometriosis? Do you have painful periods? Know that birth control would just be another variable that could confuse your system. If I were you I would not through a new drug into the mix and I’d focus on addressing issues with lifestyle, nutrition, and supportive therapies. 
 

Have you tried massage or PT for your muscle issues? Acupuncture can also help with this. 
 

Also we ask that you please update your signature with your drug history. I will post links below. 

[composter]

A few links:

 

Eastcoastgirl is a recent example of someone who connected a lot of her symptoms to stopping birth control. Starting and stopping birth control can have a load of different effects. 
 

A thread on head symptoms: 

 

 

I personally recommend using things like hot packs or ice packs for headaches, as well as giving yourself a head massage or asking someone else to do one. 
 

For your gut issues consider adding probiotic rich foods to your diet like yogurt (there are dairy free options), sauerkraut, and kombucha. These things will increase beneficial microbes in the gut to improve digestion and hopefully relieve some symptoms. 
 

Instructions on your drug history signature. Please read.

Edited November 13, 2021 by Karma
Name update

[hoping21]

Update: I was sent an email recently asking for me to post an update & was also hoping to come back and ask some questions. Unfortunately, my health struggles increased since I last posted.

 

Sorry, I didn’t reply last time. I was feeling negative about different things including my pain being dismissed and questioned by various people in my life which I’m not saying was done here but it brought up emotions around it.

 

I suspected endometriosis because I’ve had severe period pain that caused me to almost pass out since I was in high school even when taking Midol. Unfortunately, during the same time I was a caregiver for my sister and unable to sleep throughout the night because of her needing help and also crying, the endometriosis pain became chronic and not just during my periods. Then, I had another severe pain flare during my period almost passing out & unable to move on the floor (not new for me), but this time with slurred speech for the first time ever. I also tried a CBD gummy around this time hoping it would help the pain but I think it was too low a dose to do anything for that (ratio of 40 mg CBD:1 mg THC I believe) took either ibuprofen or Midol but the CBD possibly may have lowered the amount of it in my bloodstream. I can’t remember if I had started the progesterone-only birth control I take yet which was one of the only medicines available that might help the chronic pain. The next day I was very weak. I developed a foot drop/my foot would drag when I walk and then the other started doing it. Then, I was trying to walk and my legs collapsed from under me, my muscles including limbs were seizing up and jerking. And my legs felt weak and wouldn’t hold up my body. And I suddenly developed a stutter. I needed a wheelchair to get to the ER.

 

After normal brain MRI & CT, & normal muscle strength tests while lying down, I ended up being diagnosed with a functional neurological disorder likely brought on by the ongoing chronic pain and increased high level of it during the flare and ongoing highly stressful situation that I was unable to get a break from. It was explained to me that the ‘wires’ in my brain basically malfunctioned/got mixed up from the overwhelming signals.

 

I finally was able to get endometriosis diagnostic & excision surgery (the gold standard treatment for pain relief according to specialists, although some are more experienced at removing most of it than others) when the operating rooms were allowed to open back up during Covid. And I ‘graduated’ from the wheelchair to a cane with physical therapy. After surgery, I did experience exacerbation of the WD migraine and nausea which gradually improved back to pre-surgery levels but has never completely gone away since my WD. (Usually, they are worst around the time of my period)

 

My pain levels don’t get as severe as pre-surgery, but I continue to have chronic endometriosis pain which is probably partly due to the brain patterns that developed when it became chronic and went untreated because I was too overwhelmed to address it and while my sister needed my care (she is now in an adult family home) and then medical wait times were drawn out when I did. I also get bladder pain and frequency and gastrointestinal issues opposite of what I used to have. I’ve switched to a low-gluten low-FODMAP diet.

In Nov 2024, I tried the Mirena IUD which had to be done under anesthesia due to pain. I again had WD migraine and nausea from anesthesia. Over the months, I felt like the burning feeling I get in my feet and legs at night spread to my back and itches. I also felt I had increased anxiety feelings. And more frequent nausea and migraine. I decided to get the IUD removed under anesthesia, but got sick with a fever & ear infection. I don’t know what happened, but after finishing a course of doxycycline, I started having panic attacks and my temperature regulation felt off like internal burning in my upper body/possibly hot flashes. It felt like I still had the fever but my temp was normal. And I had the Mirena removed Mar 2024 again with post-anesthesia worsened migraine & nausea & dry heaving this time. I’m now continuing to have panic attacks including panic waking me up at 5am, crying spells at small things, & feeling extremely overheated when I have normally always run cold. I’m getting a tilt table test for POTs also as I’ve had symptoms of that since before WD but didn’t realize the symptoms were abnormal/could be caused by that and it seems to be worse since the last anesthesia. (I’ve measured my HR resting, sitting, & standing). & I recently read on a POTS website that SSRIs can make it worse.

 

I’ve also had dry heaving until vomiting twice since my last anesthesia that is exactly like what happened when I first started the SSRI.

It gets confusing for me now because the symptoms from different things: endometriosis, FND, WD, & POTS all overlap.

 

But since WD, my symptoms that haven’t gone away (although they lessened in severity and I have had days without noticing some of them) are nausea (feels like more of a head nausea than stomach nausea if that makes sense) & dizziness, pins & needles/burning nerves in feet, a weird head pressure/migraine in a certain area, pins & needles/burning nerves in feet especially at night, brain zaps -more like crackling & probably the least bothersome symptom for me, and derealization which I have mostly learned to accept, is less ‘strong’ than when it started and sometimes goes away but increases if panicking or sleep-deprived. These last 3 things make me feel like it is still partly the WD.

 

I’ve also gotten sick a lot since WD (viruses, flus, bacterial infections) and take longer to recover or end up needing an antibiotic.

 

So, I have new symptoms since the FND diagnosis similar to in WD that are exacerbated by stress:
Fatigue, brain fog/‘block’ in thinking, slowed processing speed, difficulty word finding, legs still ‘feel’ weak even though muscle strength test is normal, and sometimes my legs lock up or go weak, and feet drag when I walk so I use a cane now.

 

I am also applying for disability. And trying to coordinate the different physical, occupational, speech therapies, massage, counseling, & some other Dr visits along with referral paperwork and finding out insurance questions takes up all my energy when my symptoms don’t prevent me from being able to.

 

I’ve also taken some meds since my last post like antibiotics (a couple I did ok with), pryridium for bladder pain, Imitrex & Maxalt for migraine (sparingly), & my insurance finally covers massage now.

 

Lately I have occasionally been taking some hydroxyzine HCl 10 mg for the panic attacks and 0.25 mg Ativan at the worst. (I had taken it a few times at the start of withdrawal in the past and it was also the only thing that alleviated my initial WD nausea in the ER IV even though nausea did return.)

 

I have also been trying Bonine/Dramamine for nausea since it helped a little in the past but because it made me sleep. And I think sometimes sleeping actually makes the nausea worse for me. I try not to mux meds/ take more than one on the same day.

 

Sorry this post is so lengthy. I’m making another post to ask a couple questions.

[hoping21]

Trigger warning: self-harm/SI
 

My questions:

 

1) I’ve been offered Zofran for my nausea. Does this cause an adverse effect in people who had an adverse reaction to serotonin meds (SSRIs) in the first place? 
 

Have any of those on here who had an ADR tried it?
 

When I said I was wary because of that, I was offered a low dose of promethazine for nausea. But when Iooked it up, it said it was hsed as an antipsychotic. So is this a psych med with psych med effects?

 

Also, I don’t know if this helps anything, but I was hypersensitive to medicines and side effects even before WD. I kind of forgot this before I tried the SSRI since I didn’t take many medicines at that time and mostly just a couple OTC if I did. I also have alwats gotten motion sickness easily even just in the car.

 

2a) Has anyone with an immediate ADR been able to take a microdose of something in a different class or something that worked for a relative? (am I allowed to ask this?)

 

b) Am I allowed to come back for tapering advice if needed if I try a microdose of something?

 

3) What are people supposed to do who have had chronic obsessive suicidal thoughts for years as their pre-antidepressant baseline before finally trying an antidepressant in the hopes it would help them and then had an adverse reaction and withdrawal if they feel that their pre-existing anxiety and depression symptoms are severe and unmanageable on their own and that it’s hopeless if they wouldn’t be able to take even a small dose of something to hopefully assist?

 

Note: I’m not saying I plan to act on those thoughts

[ShantyO7]

On 5/17/2024 at 1:43 AM, hoping21 said:

I was offered a low dose of promethazine for nausea. But when Iooked it up, it said it was hsed as an antipsychotic. So is this a psych med with psych med effects?

 

I would like to know this as well as I was prescribed it for nausea and insomnia... don't want to take it if it's gonna make things worse!

 

[Farm24]

On 5/17/2024 at 2:13 AM, hoping21 said:

Update: I was sent an email recently asking for me to post an update & was also hoping to come back and ask some questions. Unfortunately, my health struggles increased since I last posted.

 

Sorry, I didn’t reply last time. I was feeling negative about different things including my pain being dismissed and questioned by various people in my life which I’m not saying was done here but it brought up emotions around it.

 

I suspected endometriosis because I’ve had severe period pain that caused me to almost pass out since I was in high school even when taking Midol. Unfortunately, during the same time I was a caregiver for my sister and unable to sleep throughout the night because of her needing help and also crying, the endometriosis pain became chronic and not just during my periods. Then, I had another severe pain flare during my period almost passing out & unable to move on the floor (not new for me), but this time with slurred speech for the first time ever. I also tried a CBD gummy around this time hoping it would help the pain but I think it was too low a dose to do anything for that (ratio of 40 mg CBD:1 mg THC I believe) took either ibuprofen or Midol but the CBD possibly may have lowered the amount of it in my bloodstream. I can’t remember if I had started the progesterone-only birth control I take yet which was one of the only medicines available that might help the chronic pain. The next day I was very weak. I developed a foot drop/my foot would drag when I walk and then the other started doing it. Then, I was trying to walk and my legs collapsed from under me, my muscles including limbs were seizing up and jerking. And my legs felt weak and wouldn’t hold up my body. And I suddenly developed a stutter. I needed a wheelchair to get to the ER.

 

After normal brain MRI & CT, & normal muscle strength tests while lying down, I ended up being diagnosed with a functional neurological disorder likely brought on by the ongoing chronic pain and increased high level of it during the flare and ongoing highly stressful situation that I was unable to get a break from. It was explained to me that the ‘wires’ in my brain basically malfunctioned/got mixed up from the overwhelming signals.

 

I finally was able to get endometriosis diagnostic & excision surgery (the gold standard treatment for pain relief according to specialists, although some are more experienced at removing most of it than others) when the operating rooms were allowed to open back up during Covid. And I ‘graduated’ from the wheelchair to a cane with physical therapy. After surgery, I did experience exacerbation of the WD migraine and nausea which gradually improved back to pre-surgery levels but has never completely gone away since my WD. (Usually, they are worst around the time of my period)

 

My pain levels don’t get as severe as pre-surgery, but I continue to have chronic endometriosis pain which is probably partly due to the brain patterns that developed when it became chronic and went untreated because I was too overwhelmed to address it and while my sister needed my care (she is now in an adult family home) and then medical wait times were drawn out when I did. I also get bladder pain and frequency and gastrointestinal issues opposite of what I used to have. I’ve switched to a low-gluten low-FODMAP diet.

In Nov 2024, I tried the Mirena IUD which had to be done under anesthesia due to pain. I again had WD migraine and nausea from anesthesia. Over the months, I felt like the burning feeling I get in my feet and legs at night spread to my back and itches. I also felt I had increased anxiety feelings. And more frequent nausea and migraine. I decided to get the IUD removed under anesthesia, but got sick with a fever & ear infection. I don’t know what happened, but after finishing a course of doxycycline, I started having panic attacks and my temperature regulation felt off like internal burning in my upper body/possibly hot flashes. It felt like I still had the fever but my temp was normal. And I had the Mirena removed Mar 2024 again with post-anesthesia worsened migraine & nausea & dry heaving this time. I’m now continuing to have panic attacks including panic waking me up at 5am, crying spells at small things, & feeling extremely overheated when I have normally always run cold. I’m getting a tilt table test for POTs also as I’ve had symptoms of that since before WD but didn’t realize the symptoms were abnormal/could be caused by that and it seems to be worse since the last anesthesia. (I’ve measured my HR resting, sitting, & standing). & I recently read on a POTS website that SSRIs can make it worse.

 

I’ve also had dry heaving until vomiting twice since my last anesthesia that is exactly like what happened when I first started the SSRI.

It gets confusing for me now because the symptoms from different things: endometriosis, FND, WD, & POTS all overlap.

 

But since WD, my symptoms that haven’t gone away (although they lessened in severity and I have had days without noticing some of them) are nausea (feels like more of a head nausea than stomach nausea if that makes sense) & dizziness, pins & needles/burning nerves in feet, a weird head pressure/migraine in a certain area, pins & needles/burning nerves in feet especially at night, brain zaps -more like crackling & probably the least bothersome symptom for me, and derealization which I have mostly learned to accept, is less ‘strong’ than when it started and sometimes goes away but increases if panicking or sleep-deprived. These last 3 things make me feel like it is still partly the WD.

 

I’ve also gotten sick a lot since WD (viruses, flus, bacterial infections) and take longer to recover or end up needing an antibiotic.

 

So, I have new symptoms since the FND diagnosis similar to in WD that are exacerbated by stress:
Fatigue, brain fog/‘block’ in thinking, slowed processing speed, difficulty word finding, legs still ‘feel’ weak even though muscle strength test is normal, and sometimes my legs lock up or go weak, and feet drag when I walk so I use a cane now.

 

I am also applying for disability. And trying to coordinate the different physical, occupational, speech therapies, massage, counseling, & some other Dr visits along with referral paperwork and finding out insurance questions takes up all my energy when my symptoms don’t prevent me from being able to.

 

I’ve also taken some meds since my last post like antibiotics (a couple I did ok with), pryridium for bladder pain, Imitrex & Maxalt for migraine (sparingly), & my insurance finally covers massage now.

 

Lately I have occasionally been taking some hydroxyzine HCl 10 mg for the panic attacks and 0.25 mg Ativan at the worst. (I had taken it a few times at the start of withdrawal in the past and it was also the only thing that alleviated my initial WD nausea in the ER IV even though nausea did return.)

 

I have also been trying Bonine/Dramamine for nausea since it helped a little in the past but because it made me sleep. And I think sometimes sleeping actually makes the nausea worse for me. I try not to mux meds/ take more than one on the same day.

 

Sorry this post is so lengthy. I’m making another post to ask a couple questions.

Have you had a period of time where the symptoms had gotten better

[Farm24]

On 5/17/2024 at 2:13 AM, hoping21 said:

Update: I was sent an email recently asking for me to post an update & was also hoping to come back and ask some questions. Unfortunately, my health struggles increased since I last posted.

 

Sorry, I didn’t reply last time. I was feeling negative about different things including my pain being dismissed and questioned by various people in my life which I’m not saying was done here but it brought up emotions around it.

 

I suspected endometriosis because I’ve had severe period pain that caused me to almost pass out since I was in high school even when taking Midol. Unfortunately, during the same time I was a caregiver for my sister and unable to sleep throughout the night because of her needing help and also crying, the endometriosis pain became chronic and not just during my periods. Then, I had another severe pain flare during my period almost passing out & unable to move on the floor (not new for me), but this time with slurred speech for the first time ever. I also tried a CBD gummy around this time hoping it would help the pain but I think it was too low a dose to do anything for that (ratio of 40 mg CBD:1 mg THC I believe) took either ibuprofen or Midol but the CBD possibly may have lowered the amount of it in my bloodstream. I can’t remember if I had started the progesterone-only birth control I take yet which was one of the only medicines available that might help the chronic pain. The next day I was very weak. I developed a foot drop/my foot would drag when I walk and then the other started doing it. Then, I was trying to walk and my legs collapsed from under me, my muscles including limbs were seizing up and jerking. And my legs felt weak and wouldn’t hold up my body. And I suddenly developed a stutter. I needed a wheelchair to get to the ER.

 

After normal brain MRI & CT, & normal muscle strength tests while lying down, I ended up being diagnosed with a functional neurological disorder likely brought on by the ongoing chronic pain and increased high level of it during the flare and ongoing highly stressful situation that I was unable to get a break from. It was explained to me that the ‘wires’ in my brain basically malfunctioned/got mixed up from the overwhelming signals.

 

I finally was able to get endometriosis diagnostic & excision surgery (the gold standard treatment for pain relief according to specialists, although some are more experienced at removing most of it than others) when the operating rooms were allowed to open back up during Covid. And I ‘graduated’ from the wheelchair to a cane with physical therapy. After surgery, I did experience exacerbation of the WD migraine and nausea which gradually improved back to pre-surgery levels but has never completely gone away since my WD. (Usually, they are worst around the time of my period)

 

My pain levels don’t get as severe as pre-surgery, but I continue to have chronic endometriosis pain which is probably partly due to the brain patterns that developed when it became chronic and went untreated because I was too overwhelmed to address it and while my sister needed my care (she is now in an adult family home) and then medical wait times were drawn out when I did. I also get bladder pain and frequency and gastrointestinal issues opposite of what I used to have. I’ve switched to a low-gluten low-FODMAP diet.

In Nov 2024, I tried the Mirena IUD which had to be done under anesthesia due to pain. I again had WD migraine and nausea from anesthesia. Over the months, I felt like the burning feeling I get in my feet and legs at night spread to my back and itches. I also felt I had increased anxiety feelings. And more frequent nausea and migraine. I decided to get the IUD removed under anesthesia, but got sick with a fever & ear infection. I don’t know what happened, but after finishing a course of doxycycline, I started having panic attacks and my temperature regulation felt off like internal burning in my upper body/possibly hot flashes. It felt like I still had the fever but my temp was normal. And I had the Mirena removed Mar 2024 again with post-anesthesia worsened migraine & nausea & dry heaving this time. I’m now continuing to have panic attacks including panic waking me up at 5am, crying spells at small things, & feeling extremely overheated when I have normally always run cold. I’m getting a tilt table test for POTs also as I’ve had symptoms of that since before WD but didn’t realize the symptoms were abnormal/could be caused by that and it seems to be worse since the last anesthesia. (I’ve measured my HR resting, sitting, & standing). & I recently read on a POTS website that SSRIs can make it worse.

 

I’ve also had dry heaving until vomiting twice since my last anesthesia that is exactly like what happened when I first started the SSRI.

It gets confusing for me now because the symptoms from different things: endometriosis, FND, WD, & POTS all overlap.

 

But since WD, my symptoms that haven’t gone away (although they lessened in severity and I have had days without noticing some of them) are nausea (feels like more of a head nausea than stomach nausea if that makes sense) & dizziness, pins & needles/burning nerves in feet, a weird head pressure/migraine in a certain area, pins & needles/burning nerves in feet especially at night, brain zaps -more like crackling & probably the least bothersome symptom for me, and derealization which I have mostly learned to accept, is less ‘strong’ than when it started and sometimes goes away but increases if panicking or sleep-deprived. These last 3 things make me feel like it is still partly the WD.

 

I’ve also gotten sick a lot since WD (viruses, flus, bacterial infections) and take longer to recover or end up needing an antibiotic.

 

So, I have new symptoms since the FND diagnosis similar to in WD that are exacerbated by stress:
Fatigue, brain fog/‘block’ in thinking, slowed processing speed, difficulty word finding, legs still ‘feel’ weak even though muscle strength test is normal, and sometimes my legs lock up or go weak, and feet drag when I walk so I use a cane now.

 

I am also applying for disability. And trying to coordinate the different physical, occupational, speech therapies, massage, counseling, & some other Dr visits along with referral paperwork and finding out insurance questions takes up all my energy when my symptoms don’t prevent me from being able to.

 

I’ve also taken some meds since my last post like antibiotics (a couple I did ok with), pryridium for bladder pain, Imitrex & Maxalt for migraine (sparingly), & my insurance finally covers massage now.

 

Lately I have occasionally been taking some hydroxyzine HCl 10 mg for the panic attacks and 0.25 mg Ativan at the worst. (I had taken it a few times at the start of withdrawal in the past and it was also the only thing that alleviated my initial WD nausea in the ER IV even though nausea did return.)

 

I have also been trying Bonine/Dramamine for nausea since it helped a little in the past but because it made me sleep. And I think sometimes sleeping actually makes the nausea worse for me. I try not to mux meds/ take more than one on the same day.

 

Sorry this post is so lengthy. I’m making another post to ask a couple questions.

Also the iv meds in the hospital can have anti psychotic in them.  Benzos can act as a muscle relaxer?  Could that be causing weak muscles?  Www.benzobuddies.com 

[hoping21]

I tried to make two posts here recently, but for some reason they never showed up after I submitted them. After intermittently taking 0.25 and 0.5 mg Ativan, I developed non-epileptic seizures or PNES partly because of the extreme fear that I would end up needing to taper and didn't want to go through another withdrawal. I was also already experiencing high levels of panic after an IUD under anesthesia, getting sick with possible Covid, and a course of doxycyline. I didn't want to take this since it affects serotonin and and I heard it can cause akathisia but the urgent care Dr refused to prescribe me an alternative antibiotic. (My first panic attack was the day I finished the antibiotic.) And I started having retching and vomiting and uncontrollable crying over small things as soon as the IUD was removed. (I also took one opioid that day because I was afraid of my pain level increasing)

 

After a very violent non-epileptic seizure with yelling, my mom/now caregiver took me to the ER and I was slurring/unable to answer the Dr part of the time. He had me take 2 mg of Ativan so that I would lie still in the MRI and then told me I was taking too low a dose of Ativan and not to take it sporadically to take it every day 1 mg Ativan morning and night. Since then, my panic has gotten worse and I have confusion, disorientation, extreme difficulty concentrating, intrusive thoughts, increased nausea, severe hypersensitivity to smell at a level which I haven't had since the very beginning of the SSRI withdrawal. (I did take 4-5 pills of 0.25 or 0.5 mg at that time of the initial withdrawal in the first few weeks)

 

I used to be able to gauge if I would have worse migraine or nausea symptoms as my period got closer, but ever since the IUD removal I haven't had a period which is abnormal for me even on birth control. I did lose 10-15 pounds from being too nauseous to eat much and fear of vomiting.

 

So I've now been taking 1 mg Ativan twice a day for approximately 3 months & 2 weeks. I want to make a separate post asking for advice about the speed of the taper my Dr. prescribed which I had to plead for him to even do the current rate because he said if I was tapering longer than the time that I was on it, it wouldn't be good. Is this true? Also, I never felt a sense of relief from the Ativan. There were a couple days I felt weird, out of it, and drugged which I didn't like and since then, I haven't been able to feel any effects other than worse derealization and nausea.

[hoping21]

The website keeps logging me out and deleting my posts when I click submit. I will re-write the post. I'm sorry if I do something incorrectly/haven't interacted on the site with others enough, I have severe psychogenic non-epileptic seizures throughout the day every day that greatly affect my ability to concentrate, do calculations, and any small task triggers them. They are not well known but FND & PNES are as debilitating as MS and Parkinson's. I've also recently lost 15 lbs from extreme nausea when I eat, loss of any appetite or hunger sensation, and fear of retching and vomiting and get fatigued easily. I asked my caregiver for help posting on here about advice, but they refused and are threatening to send me to a psychiatric hospital if my tapering symptoms affect their sleep schedule.

 

This is the schedule my Dr is allowing me to taper with liquid Ativan where 2 mg = 1 mL

 

Week #  AM dose (mL) PM dose (mL)

Wk 1 & 2 AM 0.5 PM 0.4

Wk 3 & 4 AM 0.4 PM 0.4

Wk 5 & 6 AM 0.4 PM 0.3

Wk 7 & 8 AM 0.3 PM 0.3

Wk 9 & 10 AM 0.3 PM 0.3

Wk 11 & 12 AM 0.2 PM 0.2

Wk 13 & 14 AM 0.2 PM 0.1

Wk 15 & 16 AM 0.1 PM 0.1

Wk 17 & 18 AM 0.1 PM 0

Wk 19 Stop

 

My questions are: Is this too fast of a taper? I was hypersensitive to medication even before SSRI withdrawal and some other people in my family genetically related to me are also highly sensitive to chemicals, medicines, etc. I asked if I could go down by 5 percent the first week and my Dr said ok initially but then this is what they wrote out. I think it's a 10 percent taper but I haven't been able to focus long enough to do math since the PNES started.

 

Also, the Benzo Coalition said if you're not doing the Valium crossover, that Ativan has a short half-life and is better to dose 4 or 5 times a day while tapering. Is this true?

 

@Shep@brassmonkey@Altostrata

 

I don't know how to get a moderator with benzo experience to see my post, so I hope it's okay to tag some names that I recognize from reading the site. Thank you for all that you do & have done to help people on here over the years

[hoping21]

@Farm24 Yes, there was a period of time where my symptoms had greatly improved. I still had nausea & derealization but at a lower level and would not always notice it when distracted. I was able to volunteer in preparation of gauging how many hours I might be able to work. Unfortunately, I had undiagnosed and untreated health problems before ever starting the SSRI that snowballed and became severe chronic pain during a time of extreme stress in my life that I was not able to get a calm break from. This led to the functional neurological disorder diagnosis and I wasn't taking any benzos at that time, so they didn't cause the leg weakness.

 

If you are able to reduce/avoid stress as much as possible, try to prevent getting run down or sick with precautions (I know this is easier said than done and not always in one's control), and have even one supportive person in your life, I think it greatly helps with healing.

[hoping21]

@ShantyO7 Sorry for such a late response, I have been incapacitated the majority of the time lately by my PNES since they began. From what I have read, the message on this website is to avoid other medications early in withdrawal. I did try Dramamine/Bonine at one point but it only helped because I'd fall asleep so then I wouldn't be aware I was nauseous, I didn't notice a difference in the nausea. I did try ginger chews, ginger tea, & later on ginger capsules which I think should be okay. They didn't really feel helpful to me but having something to take made me feel a little more control if that makes sense. It seems like maybe there was a time some years out that the ginger capsules did seem to help but I wasn't really consistent with them so I can't remember to say more about that. Time helped to lessen the severity over the years but that was one of my symptoms that never fully left. Doing other activities/hanging out with people once I was able to helped to at least distract somewhat from it and there were days I didn't notice nausea at all before my recent setback. However, I've always been extremely sensitive to nausea/motion sickness even before ever taking meds and I'm also one of the rarer cases who got WD symptoms after a very short course.

[hoping21]

Note: Don't read this if you're in the midst of the beginning of your withdrawal. I tend to get rare side effects/reactions/conditions. Although knowing what I know now, if I had ever found a medication that continued to "work" to help me live a somewhat normal life, I would never go off of it.

 

This is an update for any researchers & if anyone on here can give advice. I know it's not a site to recommend medications but I may not have a choice. I've seen a few things mentioned that people took for a short time at low doses (Buspar, lamotrigine, Wellbutrin) and a few users that were able to go back on their original meds. And some people that did alternative drug therapies (ayahuasca) that seemed to help them some. But I also saw people that got way worse from doing that. The only problem is I never found a med that worked for me to have an option of something to go back on with the knowledge how it might affect me 

 

Around 2021, I was diagnosed with functional neurological disorder. After IUD placement under anesthesia which caused severe endometriosis pain for 2 weeks almost causing me to pass out (after a previous surgery had finally lowered my pain level from reaching that point), I felt a weird burning sensation in my back and increased anxiety. Then, I had a severe month-long illness - possible Covid, I didn't get a PCR, (severe sore throat leading to ear infection, & hearing loss, fever, hot & cold flashes, sweats, muscle aches, congestion, & possibly cough (I can't remember now). I took the antibiotic doxycycline even though I wanted an alternative but the walk in clinic refused to prescribe me any other kind. The day that I finished the course, I had a panic attack. After that, I was having panic every morning and wanted the IUD removed to see if it would lower the anxiety so within the week very soon after that, I had it removed under anesthesia. I also took one opioid because I was afraid of potential pain but don't remember having any. Then, I had a migraine, much worse nausea, dry heaving and vomiting. I also lost all appetite for any foods & could only stomach smoothies for meals and lost 15 lbs because of it. (After my previous surgery, I also took an opioid and had increased nausea & migraine but it went back down some after a month even though I'd still get those symptoms a lot.) And, I had uncontrollable crying at every small thing after the IUD removal just like I did in withdrawal. I also continued to have debilitating worsened nausea and panic in the mornings along with an intense internal overheating & burning that I never had before the IUD and illness. I did a tilt table test for POTs which was borderline abnormal & there's a months long wait-list to see the Dr who knows about it. I continued to have nausea, dry heaving & vomiting causing a fear of eating, loss of all appetite, migraine-like pain, and daily panic at a baseline level but every day. I tried going out & doing something, a very low dose CBD edible & hydroxyzine (separately) which both helped somewhat with the panic but not the nausea or gagging/vomiting. My Dr told me Ativan would help the vomiting so I tried a couple of intermittent low doses of that throughout the days. But, I changed my mind and didn't want to take it because I was afraid of an eventual withdrawal. My Dr & Mom both pressured me into trying it. As I swallowed the first pill, I had my first non-epileptic seizure which is a rare condition that looks like & has symptoms of a seizure but doesn't show any electrical activity in an EEG so it's not epilepsy. It also caused me to intermittently gasp for air. It can be triggered by things like anesthesia, severe trauma, chronic pain, TBI, concussion, and I believe sometimes by various medication reactions. It's also common to develop it if you have functional neurological disorder (FND). The seizures also last longer than epileptic seizures. They're also called dissociative seizures but many people are still aware during them. They're treated as psychological but also neurological.

 

There's no medication that treats it specifically, only counseling. But I have been trying the counseling techniques and they haven't been very effective. Plus, I can't do them all day which is how often I'm having symptoms. It can have many varying different presentations for different people also. 39% of people diagnosed with it due by suicide. During my 3rd & most violent NES which included thrashing/convulsing & uncontrollable vocalizations, my mom drove me to the ER even though you aren't supposed to do that for these episodes. The Dr there who didn't know what FND was gave me 2 mg of Ativan so that I would be still for a brain scan. It made me feel very weird, drugged, and out of it which I didn't like the feeling of at all. I also had slurred speech and extreme difficulty answering the Dr's questions and getting words out because of it. (This is a common symptom with NES). That ER Dr instructed me to increase my Ativan to 1 mg twice a day and said not to skip doses and that I wasn't taking enough. Some professionals recommend against benzos for NES. Since then, my NES symptoms have increased to (all uncontrollable) hyperventilation, yelling/shouting/screaming until my voice is gone and even after that, functional tics/Tourette's of singing nonsense phrases, leg tremor & bouncing, back arching, side to side head thrashing, convulsing, legs kicking up out of bed,

bouncing while sitting on the bed, running into walls, running with my walker, hopping, galloping, clapping, slapping my arms, neck jerking forward violently over and over so that it hurts, shaking clenched fists, and standing seizures. The worst part of all of this is that with almost all of these movements/symptoms, I get rushes of panic each time they happen. I also get lightheaded and dizzy with tingling fingers and feet from hyperventilating. The absolute worst seizures I've had were the ones that turned into prolonged screaming terror panic attacks until my hearing is muffled. I also get coughing, nausea, & gagging/dry heaving after them. And crying which is another NES symptom. And I also get disorientation, severe confusion, no ability to concentrate on even small tasks - my brain will literally shut down and be unable to even process the steps of something simple like finding an email I'm looking for. It's very scary and the FND website compares the debilitation level to MS & Parkinson's. These are also PNES symptoms but I'm also not sure if it's partly the Ativan making my cognition way worse. And my ADHD and autism traits are intensified x 1000 (short-term memory loss, emotional dysregulation when I can't find what I'm looking for, anxiety when there's a change in expected plans all triggering seizure symptoms). I also get irrational intrusive thoughts I didn't used to have like "What if my mom dies" or that she's going to leave me abandoned at the mall when I was waiting for her in a chair and she didn't show up for a while because she didn't see me. And my derealization is way worse and chronic now when it had become milder and I would sometimes have breaks where I didn't notice it before the IUD removal & Ativan. My hypersensitivity to smells causing worsening nausea also worsened again. 

 

They say PNES is your body stuck in fight-or-flight with a hypersensitive/hyper vigilant from trauma or PTSD nervous system and I can't watch emotional movies or listen to music just like in the beginning of withdrawal. It feels like something re-triggered a bunch of withdrawal symptoms on top of the seizure episodes. And I'm having weird tight squeezing sensations in my head/brain and brain zaps and electric ear canal pain. (I was still having them before but they feel more frequent & worse again now). I'm also really congested & my lungs sometimes burn when I run (not sure if this is from the illness lingering/possible Covid). I also keep getting a sore throat -possibly from needing gingivitis mouthwash for bleeding gums which helped in the past- and feel run down (not just from the screaming).

 

And I don't have predictable windows and waves like I did in the worst of my WD (the first month, this condition has lasted 4 months now) Distraction is one of the techniques that helps FND/PNES symptoms so sometimes distraction on my phone prevents them from happening and I can breathe normally. I think it might partly have to do with being the only thing stimulating enough for my ADHD brain that it makes it harder to have racing thoughts at the same time as the activity.

 

I've had to use a wheelchair a lot more also because my legs won't hold me up anymore a lot of the time and go wobbly/weak/collapse like they did in the beginning when my FND first started. 

 

The nonstop build up ofa panic when trying to do anything is the worst feeling I've ever felt. I never thought I would miss the emotionally numb anhedonia but I would do anything to feel like that instead right now. Plus, I was able to walk normally during that time. 

 

And there's no medication for PNES but many specialists recommend treating any underlying mental illnesses with medication. Some people's PNES conditions also were helped by TMS, psilocybin, ketamine, medical marijuana/cannabis, trauma informed therapy, EMDR & somatic therapy, hypnosis, or CBT. From what I read, every person's journey to what helped reduce them was different.

 

The theory is that "wires"/connections in the brain somehow get crossed between emotional thoughts & bodily actions. So that people unconsciously do movements, noises etc that they really aren't in control of & don't feel in control of and those brain connections have to be retrained to get stronger or something like that. But it's underresearched, many medical providers have never even heard of it, and there's not a lot of studies done about treatment. From what I've read, half the people diagnosed with it improve and some recover completely. 

 

I've been recommended to go to a residential treatment center for it where half the staff are psychiatrists & am so debilitated in what I'm able to do from the seizure symptoms that I may not have a choice. I'm terrified because one of my big traumas that my memory actually blanked out part of was the whole WD experience. Please message me if you've ever been in a similar situation or know of someone that has.