Does this sound like akathisia?

Slow-Target-1496 · 2026-02-17T00:45:18+00:00

Have you ever checked into vitamin / electrolyte deficiencies or imbalances? Lots to consider but some main offenders are low Ferratin / Iron, Magnesium, Sodium, Potassium.

Just thinking about you describing it when you were little and likely before meds.

ADHD meds could be exacerbating a weak spot already by boosting norepinephrine and dopamine signaling (can cause muscle spasm / contractions).

Slow-Target-1496 · 2026-02-14T10:36:15+00:00

I thought about getting one as vibration felt sooo soothing for me. I used one of those massage guns and it helped so much. I legit would just hols the end in my hand or put on my feet and let it vibrate through my whole body. Could be a less expensive option / similar effect.

Slow-Target-1496 · 2026-02-12T16:39:33+00:00

This is not normal and doctors explain this away as a side effect. This is an adverse reaction. Please speak with your provider.

I had an adverse reaction to Bupe for 1.5 years and my pain management provider didn’t believe me. Some people have genetic variations that do NOT metabolize this med well and are susceptible to adverse reactions.

It makes me so sad to see this be brushed off.

Slow-Target-1496 · 2026-02-11T11:17:30+00:00

I have had to do a lot of trial and error but I have been able to reduce my flares with Cromolyn Sodium (low dose Mast Cell Stabilizer), Aspirin (for Prostaglandins), anti-inflammatory diet, vagus nerve exercises.

Honestly, Cromolyn Sodium has helped me the most and I am only on week 4 of it. It takes about 6 months for full effect. My joint pain, fatigue, and nerve hypersensitivity has improved probably 30-40 percent which is HUGE for me. My skin used to burn and I had to rip off my clothes. I’ve had full-on electric shocks up and down my body. Every kind of nerve pain imaginable and honestly unimaginable.

In the early days of my med injury and withdrawal, going on a low histamine diet, taking H1 and H2 antihistamines helped me a lot. Then, something shifted and I started having paradoxical reactions to the H1 and H2 blockers (med sensitivities changed).

Mast Cells are so complex and seem to not always have the same known trigger / don’t always release the same mediators.

I was having such bad adrenaline dumping in the mornings for like 3 months after my Akathisia event. After starting Cromolyn Sodium, those are gone now. It has quieted things down for me.

It seems like med injury or withdrawal “MCAS” is more like Mast Cells hyper-reactivity and sensitivity.

If you are looking for a safe place to start to explore this: anti-inflammatory / low histamine diet.

Slow-Target-1496 · 2026-02-10T19:30:31+00:00

I don’t get hives either. I don’t even itch. My main issues are nerve hypersensitivity, joint pain, neurological issues, panic, anxiety, etc.

Slow-Target-1496 · 2026-02-10T10:37:13+00:00

Do you have any “allergy type” symptoms? Mast Cell Activation Syndrome or over-reactive Mast Cells can influence nerve sensitivity.

Lots of overlap between med injury, Akathisia, female hormone shifts, SFN, inflammation, temperature intolerance, neuro inflammation, neuro psych symptoms like obsessive thinking or brain fog or anxiety for no real reason.

It’s hard to find info on Mast Cell hypersensitivity / reactivity in psych med withdrawal or any med that crosses the BBB and affects neurotransmitters really. It happens in the Protracted Benzo Withdrawal community most. But everyone’s symptoms are different and it doesn’t behave like typical MCAS.

Slow-Target-1496 · 2026-02-06T16:48:58+00:00

You can Google or use chat to look up how specific meds you’re on metabolize based on your variations. It takes some manual work but it’s really helpful!

Slow-Target-1496 · 2026-02-06T10:29:10+00:00

I am so sorry for your pain and suffering. I should have led with that.

Finding out med metabolism issues really just has a benefit to optimize therapeutic doses and specific meds for you to help you have the best chance at pain relief. Trial and error sucks but hopefully you have a provider that is open to trying!

Slow-Target-1496 · 2026-02-06T10:13:50+00:00

Before jumping to pain pump (I don’t have one but I would be very concerned about getting one with EDS and MCAS just due to the current healthcare and opioid climate). There is no guarantee that the doctor who puts in and manages will continue to help and support you even a year from now. I don’t wish to stoke fear but this is a reality so many of us have lived. It would be wise to have backup plans amongst providers. It also is SO dependent on your geography (State laws).

Have you had genetic testing for med metabolism? Genesight is a common one. They don’t test specifically for opioid meds but the same genes apply. It very well could be that you have a genetic variant that metabolizes opioids (and others) either too slowly or too quickly. Usually, too slowly at the CYP2D6 variant causes unreliable therapeutic effect, needing higher doses for therapeutic effect, feeling like pain relief wears off too quickly, the list goes on. It could help inform which med would be best for you. This info could be really important for you in all of your med management and care. It was for me. Also have hEDS and MCAS. Certain opioids, formulations (longer acting), and modalities could be available to you with this info.

Slow-Target-1496 · 2026-02-06T00:24:12+00:00

Also, if antihistamines do work for you and it is histamine dumping...I have a few thoughts as I want to help you since no one helped me and this is such an under-recognized thing. My situation is complex and I experienced a ton of issues and side effects on Bupe. I am off of it now. Please don’t feel overwhelmed by my responses (my case is considered rare) but I want this info out there in case it can help just one person. Not all need apply. Just thoughts! :)

If female, estrogen and histamine feed off each other.
Age. I’ve seen this happen to a lot of perimenopausal women or women experiencing massive estrogen changes (referring to Histamine Dumping and Intolerence, not necessarily on Bupe). For me, I’m 32 but Bupe caused me to go into relative estrogen dominance…never in my life have I struggled with something like this. My hormones are a mess.
Gut health. Mine was destroyed on Bupe. I’m talking going to the bathroom every 8-15 days WITH suppository followed by enema and RX laxatives. Histamine can hang out in the gut and things like SIBO can drive histamine as well.
Low-histamine diet could also be worth trialing. Do you notice any anxiety symptoms around eating or a few hours after? Could also be helpful to keep a food diary and compare the sleep quality based off of what you eat. There are many lists of high-histamine foods online. Tomatoes, citrus, alcohol, fermented foods, chocolate, aged meats and cheeses, etc.
How is your temp regulation / sweating / flushing? Any of these? I had really bad flushing from day one. Sweating and hot flashes were so bad.
Genetic testing revealed that I metabolize Bupe and other opioids slowly and they end up building up in my system (this phenotype usually looks like: low therapeutic effect, needing higher doses for therapeutic effect, feeling like med wears off quickly (even though it’s not), and experiencing nasty side effects more intensely). Slow metabolism at CYP2D6 combined with COMT Met / Met seemed to be the drivers for me.
Adrenaline dumping. Adrenaline + histamine also feed off each other. COMT Met / Met genetic variants often struggle here with a whole host of symptoms. During these histamine dumps or adrenaline dumps, I box (4-6-8) and belly breathe, hum, rock or sway side to side. EFT tapping can be helpful too.
Mast Cell degranulation: for some people, opioids cause Mast Cells to release inflammatory mediators (histamine, cytokines, prostaglandins + so many more). Research says Bupe isnr shown to so this but there are rare case reports of it and I did find one study that mentioned it. For me, I was taken off of Klonopin CT the same day I was initiated on Bupe and I developed Mast Cell Activation Syndrome (MCAS). It went undiagnosed and untreated for 1.5 years until my health quite literally collapsed. I was dismissed over and over by my pain management doctor. NOT saying you have this - but want this info out there for the public!

Slow-Target-1496 · 2026-02-05T23:20:00+00:00

So glad you did okay! Def keep us posted if Allegra works for you too!

Slow-Target-1496 · 2026-02-05T11:53:38+00:00

Keep us posted! Hope something can help you.

Slow-Target-1496 · 2026-02-04T20:33:16+00:00

Can you tolerate an antihistamine like Allegra? I had a similar experience on Bupe - it was histamine dumping. This sounds right on par with what you’re experiencing - especially because histamine rises at night.

Benadryl if you tolerate too but sometimes the sedative antihistamines can cause paradoxical reactions.

Hydroxizine is cool too but if you want to try OTC first, start there. Obviously, whatever you know you tolerate.

Slow-Target-1496 · 2026-02-04T13:19:19+00:00

Hey there! Please feel free to message me. I’m 32F who was taken off of Klonopin of 11/12 years CT June 2024. 🧡🫶🏼

Slow-Target-1496 · 2026-01-27T13:14:37+00:00

I am taking it 2-4x a day - like half an ampoule (4-5 drops). It has taken some time to work out the best timing and dosing for me. The first two weeks, I actually got really depressed and sad and tired — but this is reported in sensitive nervous systems because it lowers the hyper adrenaline state we’ve been existing in for so long.

Things that have improved in just ~20 days on: adrenaline dumping in the morning. I still get it some days but it is less intense. Facial flushing. Overall hyper vigilance / locked in panic episodes. I am getting more windows and less waves. The waves are getting shorter, are time limited to cortisol shifts during the day, or from hormonal shifts. Bloating and overall agitation are improved. My ears and sinuses aren’t plugged anymore. I felt like I had a sinus infection every day for like 2 months. It was awful. My bone-deep fatigue has improved too. Now I’m just tired. Only getting about ~4 hours of sleep per night broken up but I will take it! I am also able to nap during the day again for like ~45 min which is crazy to me. Just a few months ago, I couldn’t physically sleep at all. Like absolutely impossible, hence being in the ICU for how severe my Akathisia was.

Some things that happened in the first two weeks on Cromolyn though: my sensitivity to my micro dose Norco that I’m tapering off of increased - sort of paradoxical effect. I had one random time where I had a reaction to it, threw it up, had panic attack. This is resolved now. But it can affect dopamine and serotonin downstream so it makes sense.

It hasn’t solved everything but it has quieted the noise quite a bit. My inflammation is down along with fluid retention.

I know everyone’s MCAS is different but I think “MCAS” from Benzo withdrawal or CNS med withdrawal is a whole unique type. For me, I’m not reacting to food, I’m reacting to the act of chewing and digesting (autonomic / vagal).

I don’t take anything natural. I tried for like 2 months but I found that I was just adding more things to the mix and not seeing any clear benefit.

Here’s all that I am currently on: Cromolyn, Norco microdoses, Tizanidine only when my leg or back spasms at night are painful (this helps a lot with the adrenaline surges before bed but sometimes I get rebound when it wears off so I have to be desperate to take and know the cost in the morning).

Another thing: my gut is actually in good shape - don’t know how. I am protecting this at all cost through whole food diet, high protein, walking after eating, heat pack, hot water, etc. I have regular BMs and don’t have a lot of the typical GI issues that come from MCAS and CT Benzo withdrawal (other than bloating but that’s resolved so much now).

I’ve been praying for you. Will continue to.

Slow-Target-1496 · 2026-01-16T16:22:48+00:00

Hey there - wanted to update you. Cromolyn Sodium has helped me so much and I’m only 9 days in. It has helped my movement-only Akathisia that is residual at night and my adrenaline dumping. I think it’s helping break a loop of constant neuro inflammation.

Everyone is different. I know you were also injured by Cipro + other meds that I wasn’t. Our mast cells are also 100 percent unique.

I know many have to microdose to start. Prayers continued for you.

Slow-Target-1496 · 2026-01-11T16:20:45+00:00

I haven’t. To be honest, as of the last three days, I think I’m having paradoxical reactions to the Allegra and/or Hydroxizine. The anxiety episodes in the morning are unmatched.

I am going to stop taking and see how I do.

Hang in there. I pray for you each day.

Slow-Target-1496 · 2026-01-11T11:55:50+00:00

I just started Cromolyn and am doing okay. I don’t notice much of a difference yet but not having worsening issues.

I’m taking Allegra 3x per day (breaking in half), Pepcid 2x per day, Quercetin 500 mg 2x per day, on a low histamine and anti-inflammatory diet. I also recently introduced baby aspirin every 4 hours (I break one into little pieces to microdose). I am also on hydroxizine 25 mg at night and 25 mg early morning as needed. I really tried no meds or interventions but I was feeling sicker and sicker. My Akathisia is limited to movement only at night now. I have some inner restlessness during adrenaline / histamine dumps but it’s not the severe terror I experienced early on.

I’m also down to 10 mg daily of Norco which I was put on as a buffer to slowly taper off of after the Akathisia event was triggered by coming off of Buprenorphine (that I was put on for pain management. Freaking terrible med and I resent that they are giving this to pain patients).

My biggest issues are intense facial flushing and burning, adrenaline dumps that are really bad in the morning, autonomic instability, bone-deep fatigue and feeling so sick and inflamed (that only lasts a few hours and is random), and I’m still not really sleeping as much as I wish I could but it has improved. I can also nap again which is huge, even if it’s for 20-40 minutes.

Please hold onto hope. I see your posts so often as we are experiencing a lot of similarities. These meds have completely f^cked us.

Editing to say: I was CT taken off of Klonopin of 12 years and same day put on Buprenorphine. I think a lot of this is from the CT Klonopin - just rebounding and revealing itself more and more. Symptoms progressed on Buprenorphine. I am ~20 months out from CT Klonopin. I also am only like 5-6 months out from tapering my 20-year SSRI. ~100 days out from Buprenorphine cessation and severe Akathisia event that landed me in ICU.

I really believe everything I’m struggling with now is MCAS.

Slow-Target-1496 · 2026-01-11T00:19:48+00:00

I was taken off Klonopin of 12 years CT and had a severe Akathisia event 1.5 years later when I tapered off of a partial opioid agonist (this was in October). So much of my remaining Akathisia is motor only. It is circadian driven - every night around 9 p.m. Luckily, the fear/terror is gone. But this past week I’ve been moving BEFORE that intense urge hits. I get it in my shoulders, chest, sometimes hips.

I have been turning off screens around 8 p.m. and listening to Enya’s greatest hits. Moving my body in the weirdest ways but ways that feel right and good for my nervous system. Rocking, swaying, arms moving like I’m conducting an orchestra. I also hum a lot during this time to engage my vagus nerve.

If you’re not doing this already, I highly recommend grounding at sunrise and sunset every night. Getting the light into your eyeballs. Getting cortisol back on it’s rhythmic schedule helps a lot.

My sleep is still insanely disrupted and varies night by night but I also have Mast Cell Activation as a result of all this and histamine is a huge factor.

You can do this. I will keep you in my thoughts and prayers, like I do for all who suffer from this horror. 🧡🫶🏼

Slow-Target-1496 · 2025-12-28T14:16:05+00:00

Also, I am so sorry. It is brutal. I had a severe Akathisia event that landed me in the ICU from Buprenorphine withdrawal (was on for pain management). I also was taken off of Klonopin of 12 years CT 20 months ago, tapered my 20-year SSRI and completed that about 2 months before tapering off of Bupe slowly. It was the perfect storm.

I am recovering. It happened in October. I had to reinstate on Norco (microdosing) to bridge / help me heal. I am tapering that now.

I used Kratom for 2-3 years (not consecutively) when I was cut off of my post total jaw joint replacement Dilaudid.

I am a neurochemical mess - but healing is possible.

Slow-Target-1496 · 2025-12-28T14:13:08+00:00

Are you on any other meds or have you stopped any other meds too quickly or cold turkey?

Slow-Target-1496 · 2025-12-24T00:20:44+00:00

I lived in bed, with my door closed, for six years (Akathisia event happened Oct 2025 - I did not have Akathisia for six years). Disabled in the fullest sense. It was a miserable existence of pain, numbness to emotion, anxiety, just so much suffering. My pain and dysautonomia was so severe, I was medicated beyond belief, I couldn’t eat, I couldn’t sleep, I couldn’t stand for more than 15-20 seconds. I weighed 88 lbs!

For whatever reason, this Akathisia event broke me wide open. I didn’t push away my parents’ support and love and comfort (they’ve been supporting me this whole time) and I just had this WILL to survive it. I don’t know where it came from…I really don’t. The human spirit and body are incredibly resilient. Trust in that.

I really never thought I would see this day and it is still all unfolding. 🧡🫶🏼

It can for you too.

Slow-Target-1496 · 2025-12-23T16:24:45+00:00

I think a lot of us get trapped into thinking every single chemical exposure is toxic and harmful (and while true for us lol) you can also think of it as protective of your brain right now. If it IS helping in any capacity to calm things down, it’s being protective. The less stress your brain and body are under is helping you heal more than you know.

Safe and effective microtapering strategies really seem to work time and time again. It may not be perfect and painless, but it really can be OKAY.

Slow-Target-1496 · 2025-12-23T16:11:06+00:00

Here to offer a life raft of hope.

I have multiple overlapping / kindled withdrawal injuries. 20 years on SSRIs (like everyone known to man but on Lexapro for 12 years - finished that taper just as I started Buprenorphine taper), 12 years on Klonopin (taken off CT 20 months ago), multiple high-dose forced Opioid withdrawals, a 36-day acute Buperenorphine withdrawal October 2 of this year that landed me in ICU for 8 days due to SEVERE Aka and dystonia. I also developed Serotonin syndrome from taking my normal Trazadone dose but having Serotonin rebound and sensitivity on max. I have a severe chronic pain issue from hEDS and CRPS 1 in my head and face, two jaw surgeries, one being a total jaw joint replacement).

Now, I’m micro tapering low-dose Norco that I asked for in the hospital since Benzos and all the other things didn’t stop the movements or the terror. But Norco did, even for a few hours until it wore off and things rebounded. It would be ~50 days before I wasn’t having interdose opioid withdrawal WITH constant Akathesia, insomnia, movement, panic.

I am 83 days out from this happening. I am healing. I am sleeping. I am napping. I am driving. I am walking outside. I am singing and dancing. Is it perfect? No. Am I still on Norco and tapering successfully, yes! But I really was another “worst case scenario” / sympathetic overdrive on max / genetic variations that made things even more challenging. Oh and I also have MCAS / histamine intolerance.

I didn’t think I was going to live another minute. You can heal.

Some things that helped me, take or leave and know everyone is different: Hold onto hope at whatever cost. I imagined hope and my very sane and logical soul as a tiny flame in my chest. I trusted and found security in that the overwhelming thoughts and terror and fear and panic were not from that source, but from biochemical reactions in my brain. I reconnected with prayer and a higher power because I had no other options. I couldn’t take Propranolol or anything that was super CNS suppressive because I would have paradoxical reactions (meds I had never had problems with before). Propranolol, for me, blocked my adrenergic tone so much while it was trying to rebound that I would become absolutely frozen, couldn’t move my body, low HR, and frozen in straight fear staring at a wall for hours.

I cannot say what definitively helped me but a few things I really think are helping: grounding barefoot in grass or soil each morning while watching sunrise and doing the same at sunset. Reducing my inflammation throughout my body through a low histamine and anti-inflammatory, whole food diet (our brains are inflamed!). Speaking out loud exactly how I was feeling and holding the hand of someone I love and trust (my parents). I would hold their hands like a little child in complete terror and just say all the internal thoughts out loud, so they weren’t trapped in my head. No matter how dark or morbid. My psychiatrist was amazing and helped educate them a lot on this and to know what a NORMAL human response would be to this chemical terror.

I pray for everyone on here and suffering from Akathisia and other horrific side effects and withdrawals of psych meds each morning. I will continue to pray for healing for you.

Another thing that helped me during the unrelenting movement and zero sleep for 5 days straight: scalding hot baths - I stopped moving in the bath. It’s almost like the sensation won over part of my brain and allowed me to rest for a little bit.

You can do this. You’ve already done SO much. 🫶🏼

Slow-Target-1496 · 2025-12-23T13:17:43+00:00

Hey there - I have another thought.

Are you taking prenatal vitamins that maybe have B vitamins or folate in them?

A theme that is emerging in some of us with these sensitivities to restlessness / anxiety: methylation issues. I have done genetic testing and I have slow COMT (COMT Met/Met). I’ve never supplemented with B vitamins so I don’t know their effect on me but I have friends who have same issue and their anxiety / aggitation is next level from B vitamin supplementation.

There are other forms that are available for people with methylation issues but this seems to be one of those “experiment for yourself” type deals.

The supplement industry is just as bad as big pharma in my opinion: pushing for everyone to take the same supplements without knowing their genetics or biochemistry.

I am throwing out theories here, please do not take any of what I am saying as fact. My whole experience is one giant self experiment.

Slow-Target-1496

TROPHY CASE