Horrible wave

[[Wi...]]

I have the worst akathisia attack ever. Something was building up today, the electrical activity in my brain must have been connected to it. I am burning up now in my entire upper body, hot, shaky, electric feelings in brain. Omg. What have I done to cause this?! I cannot move now, there is so much tension in my head and upper back and arms that it has paralysed me. 

Edited January 26 by [Wi...]

[[dj...]]

42 minutes ago, [[W...] said:

I have the worst akathisia attack ever. Something was building up today, the electrical activity in my brain must have been connected to it. I am burning up now in my entire upper body, hot, shaky, electric feelings in brain. Omg. What have I done to cause this?! I cannot move now, there is so much tension in my head and upper back and arms that it has paralysed me. 

You didn’t do anything to cause this.  This stuff has a mind of its own.  I hope you find some relief soon.  I know this has been a long, brutal wave for you. 
 

It’s darkest before the dawn. 

[[Wi...]]

6 minutes ago, [[d...] said:

You didn’t do anything to cause this.  This stuff has a mind of its own.  I hope you find some relief soon.  I know this has been a long, brutal wave for you. 
 

It’s darkest before the dawn. 

Thanks you for your support! The worst passed after about 20 minutes but now it’s very bad head pressure again. Geez. I hate these sensations!

[[Wi...]]

 

It’s a nightmare. How can akathisia get worse with time?! I haven’t really seen this happen to people who recovered. Last med ever taken in May. I am sure I ingested something that caused this around Xmas because omg what the heck. Maybe some herbs, I don’t know. I am watching myself fall apart. Electricity in my nervous system is trying to fry me. My brain and spinal cord are a live wire sizzling and buzzing trying to electrocute me. The electric pressure at the back of my head/neck almost all the time and sometimes, for example today, extends down into my legs causing very bad buzzing, pins and needles and a lot of nerve pain live barbed wire. I can only lie down, sitting and standing makes it so much worse, moving around is also not helpful. I don’t understand how I can only see deterioration as time passes. I hope there is enough strength in me to make it through. I love my daughter so much. My mum and husband are looking after her. I just can’t do it. I just want to play with her and enjoy the little things she does. 

 

Edited January 27 by [Wi...]

[[sh...]]

46 minutes ago, [[W...] said:

It’s a nightmare. How can akathisia get worse with time?! I haven’t really seen this happen to people who recovered. Last med ever taken in May. I am sure I ingested something that caused this around Xmas because omg what the heck. Maybe some herbs, I don’t know. I am watching myself fall apart. Electricity in my nervous system is trying to fry me. My brain and spinal cord are a live wire sizzling and buzzing trying to electrocute me. The electric pressure at the back of my head/neck almost all the time and sometimes, for example today, extends down into my legs causing very bad buzzing, pins and needles and a lot of nerve pain live barbed wire. I can only lie down, sitting and standing makes it so much worse, moving around is also not helpful. I don’t understand how I can only see deterioration as time passes. I hope there is enough strength in me to make it through. I love my daughter so much. My mum and husband are looking after her. I just can’t do it. I just want to play with her and enjoy the little things she does. 

I am so sorry that you have to get through all these pains! I can very much relate. 

We have to believe in recovery. We are strong. We can make this!

I just watched a video from Baylissa and she reminds us to say „I am feeling worse“ instead of „I am getting worse“. Feeling worse later on in this process or symptoms getting more intense is very common. But healing is still happening! We can get very symptomatic before recovery…. It is possible that it is going to stop tomorrow.

I am also looking for reasons… but can’t find doing anything wrong. We have to accept the nonlinear process. Symptoms just hit randomly. I know it’s so hard never knowing what shows up next. It’s just unbelievable but it is the way it seems to go….one day the sun will be shining for us again 🙏

I so dearly hope that you will turn a corner soon and that you can play with your sweet daughter again❣️The time will come🍀🍀🍀

[[dj...]]

5 hours ago, [[W...] said:

It’s a nightmare. How can akathisia get worse with time?! I haven’t really seen this happen to people who recovered. Last med ever taken in May. I am sure I ingested something that caused this around Xmas because omg what the heck. Maybe some herbs, I don’t know. I am watching myself fall apart. Electricity in my nervous system is trying to fry me. My brain and spinal cord are a live wire sizzling and buzzing trying to electrocute me. The electric pressure at the back of my head/neck almost all the time and sometimes, for example today, extends down into my legs causing very bad buzzing, pins and needles and a lot of nerve pain live barbed wire. I can only lie down, sitting and standing makes it so much worse, moving around is also not helpful. I don’t understand how I can only see deterioration as time passes. I hope there is enough strength in me to make it through. I love my daughter so much. My mum and husband are looking after her. I just can’t do it. I just want to play with her and enjoy the little things she does. 

I can’t say for sure that you didn’t ingest something to cause this, but if you don’t know for sure then but my guess is you didn’t.  I have played that game a million times.  What did I do wrong to make this happen?  9 times out of 10 I did nothing.  This stuff has a mind of its own.  
 

As painful as it is, the fact that your symptoms are in and out and fluctuating in intensity means your brain is pressing lots of different buttons trying to get it right and make repairs.  If you felt the same all the time that would mean something was permanently broken.  It’s not.  

[[Wi...]]

 

Djej, I hope you’re right! Change in symptoms means something is going on. 
 

I came to a conclusion that the electric current pressure from neck down is sort of the same pathway as internal burning that happens deep in my body. It lights up in similar spots - head, back of neck, chest, stomach, buttocks.

What’s weird is that it’s getting triggered when I am not lying down. Like lying flat or on the side makes my head and the symptoms feel a lot better. However, being reclined, sitting, standing or walking makes the pressure rise up. When it goes up, I get hot, burning, buzzing inside my head and neck and my chest and neck squeeze. That’s weird! I remember something similar during a horrific wave a year ago but it wasn’t as severe. 

 

[[de...]]

@[Wi...]  I hope your symptoms calm down soon.  I know it is discouraging to keep having waves, but you are healing.    

[[dj...]]

11 minutes ago, [[W...] said:

Djej, I hope you’re right! Change in symptoms means something is going on. 
 

I came to a conclusion that the electric current pressure from neck down is sort of the same pathway as internal burning that happens deep in my body. It lights up in similar spots - head, back of neck, chest, stomach, buttocks.

What’s weird is that it’s getting triggered when I am not lying down. Like lying flat or on the side makes my head and the symptoms feel a lot better. However, being reclined, sitting, standing or walking makes the pressure rise up. When it goes up, I get hot, burning, buzzing inside my head and neck and my chest and neck squeeze. That’s weird! I remember something similar during a horrific wave a year ago but it wasn’t as severe. 

Physical activity sets off the electrical activity in my body too.  I’m almost always lying down unless something requires me to be up.  The thing is the threshold at which this electrical activity is set off is a constantly moving target.  The threshold is always pretty low, but same days just getting up and walking to the bathroom is enough, and other days I can go to the grocery or one of my kid’s games and be ok. 

Edited January 27 by [dj...]

[[Wi...]]

17 minutes ago, [[d...] said:

Physical activity sets off the electrical activity in my body too.  I’m almost always lying down unless something requires me to be up.  The thing is the threshold at which this electrical activity is set off is a constantly moving target.  The threshold is always pretty low, but same days just getting up and walking to the bathroom is enough, and other days I can go to the grocery or one of my kid’s games and be ok. 

I bet you are right. I played with my baby a bit and it built up, I can feel I will probably get the adrenaline surge again today because I am already feeling weird and the electric storm in my brain is there. I remember a year ago I just couldn’t sit anywhere because my head was so overstimulated. 

[[Wi...]]

 

The evening was not that bad compared to earlier in the day but today? An electrical storm in my brain. Feels like weird surges, buzzing, sizzling, prickling, popping, pulling me, shocking, pounding, pulsing. My brain is having a fit. It’s like no cell in my brain knows how to communicate with another. If I make it out of this alive I will be shocked.
 

Sitting up makes me so overstimulated that everything gets 10 times worse than when I am lying down. It’s like my head is sizzling, shaking and trying to fall asleep. 
I had some of this last year and it was a long bad wave but it passed. I am recovering now from getting up to make myself breakfast and eating it. I am lying down and the electricity keeps shooting, there are some surges, zaps, pulling. Omg! I cannot stand this!!! I am the worst case scenario.

My mum will be 76 next month. She has a slew of health issues including COPD, hypertension, obesity. And she has to take care of my girl when my husband isn’t there… I am kind of ashamed of this. This shouldn’t be this way. 

Edited January 28 by [Wi...]

[[Wi...]]

 

I analysed what was happening before my worsening. I said I didn’t take anything but well that’s actually not true… I forgot I took a probiotic when I had a UTI around Dec 20, 2023 and I think it made me so much worse. I am sensitive to meds and supplements. I guess I am extremely sensitive. 

I took the probiotic regularly in the first half of last year when I was pregnant with no issues but this time it seems to have affected me badly. I took nothing else unless something I ate affected me but that had never happened before. I don’t think what I am experiencing is a spontaneous exacerbation because I have new symptoms and they are worse than anything ever. The wave began a few days after the UTI and started as a regular bad wave that would normally get a lot better after max 7 days but instead of getting better I have been getting worse and worse and it hasn’t stopped yet. What I had intermittently is now almost constant, many symptoms are 10x worse, which makes them unbearable. I can still sleep for now but last night was one of the worst ones because I had RLS all over, which used to affect my legs only. Plus my aka normally pushes me towards total immobilization and lying down and now I am lying down all the time because being up triggers the neck and head symptoms really bad. I went from functional to completely non-functional. Note that during the two months when my baseline was better and more stable I had only 2-3 days when I asked for help with my baby. I am now barely able to make myself breakfast and eating it is a feat. Evenings are a tiny bit better but not much. For some reason when something throws me off it always unravels for a longer while. Hoping for it to stop getting worse because omg!
 

 

 

[[Wi...]]

 

It’s so bad. The pressure in my head is killing me. I have it mostly all the time now but any position with my head vertically is just a nightmare. Trying to push through makes it build up and up. The pressure keeps travelling in my head - top, back, sides, even front. There is also a lot of stabbing nerve pain all over my head. It is also as previously in my neck and sometimes in my throat and in my throat it feels like someone is grabbing me. If I ignore it and sit up it will spread even further down into my chest or stomach. It’s so odd. It’s this electrical pressure, steady current. Earlier on today I had bad vibrations in my head and upper body but it calmed down. If it’s not that, it’s electricity and surges and what not. I am hysterical. I feel so useless and I have lost all hope. I cannot go on instagram because I just cannot look on people living their lives! I could handle it somehow when I was somewhat functional and able to go out and now there is no way I am walking anywhere. And I used to spend 1,5-2,5 hours daily on walks just a little over a month ago. I know I am posting a lot and not many people reply but any support will be welcome because in my real life there is no one I want to tell all this stuff to. They won’t understand and will be very worried about me. Hearing what I say here to you from someone I love would be devastating. 

 

 

[[ns...]]

3 hours ago, [[W...] said:

It’s so bad. The pressure in my head is killing me. I have it mostly all the time now but any position with my head vertically is just a nightmare. Trying to push through makes it build up and up. The pressure keeps travelling in my head - top, back, sides, even front. There is also a lot of stabbing nerve pain all over my head. It is also as previously in my neck and sometimes in my throat and in my throat it feels like someone is grabbing me. If I ignore it and sit up it will spread even further down into my chest or stomach. It’s so odd. It’s this electrical pressure, steady current. Earlier on today I had bad vibrations in my head and upper body but it calmed down. If it’s not that, it’s electricity and surges and what not. I am hysterical. I feel so useless and I have lost all hope. I cannot go on instagram because I just cannot look on people living their lives! I could handle it somehow when I was somewhat functional and able to go out and now there is no way I am walking anywhere. And I used to spend 1,5-2,5 hours daily on walks just a little over a month ago. I know I am posting a lot and not many people reply but any support will be welcome because in my real life there is no one I want to tell all this stuff to. They won’t understand and will be very worried about me. Hearing what I say here to you from someone I love would be devastating. 

Willhealsoon, hi! I'm sorry for your pain. I had this last night, it was terrible. I never have symptoms when I go to bed, it's my time to have a break even though I can't sleep. I took my dose and in 5 minutes I was un an electrical storm.  It's windy today, the barometric pressure is coming down, the weather is changing and a storm is headed our way.  This is what I think causes this for me. I've had it before but never at night.

Today is mostly better in that regard but it comes after I take my dose which it's time now.

This symptom is causing you distress, it's spirals into other symptoms.  Have you noticed that. It's because we focus so much on it that it causes panic and anxiety attacks. I know it's hard, try to breath through it, tell yourself your safe,  I'm uncomfortable but I'm safe then focus in anything else! This should help to alleviate some if the other symptoms. When we spiral like that our nervous system gets lit up and only causes more symptoms. We are telling our symptoms that we will respond and they get more intense when we respond. So try this, I hope it helps u. It helped me last night but I really had to work at it ok

Try to stay calm, breath, distract yourself and try not to focus on those symptoms 

Take care 

Ns

[[Wi...]]

 

 

Today had a bad night, vibrations, pressure. I slept but woke up a few times and it wasn’t easy. Got up and what hit me within 15 minutes was the internal burning. For me it appears in the same places where the electric pressure is so it must be a variation of the same symptom with just different sensations. So it’s worst at the back of my neck, where it seems to be originating, then I can feel it in my brain, along the spinal cord in my throat, chest or stomach and sometimes it goes down into my arms or legs and it feels like my bones are on fire. Usually one or two areas light up at a time but it travels. It burns deep inside and feels like lava or heartburn or soul on fire. Like my brain and spinal cord were taken out and fried and put back. I only found a few people who describe it this way, not many have had it It’s so scary, such a foreign sensation. I am going crazy when it hits because it feels like self-combustion is on its way. When I have this at one point it feels like my cells or bones are shaking. Why is it getting worse… I have had this for over a year and it got even worse in the last few months, and the last month has been horrific. 18 months since the setback that started this, 15 months since the antibiotic that gave me the worst symptoms and 8 months since my last pharmaceuticals. My body is not repairing anything it seems.

 

 

[[...]]

I am sorry I don't know.  I.have.been in a set

Back 13months x

[[Wi...]]

[[Wi...]]

And the wave continues. Apparently in this wave it’s my head that causes the most problems. If I do something or sit the pressure is in the back trying to electrocute me. It’s even painful. I honestly imagine a live wire stuck to my head doing that. When it builds up it’s like an electrical storm in my brain and it goes down my back. When I lie down it’s better but the pressure and weird sensations move to under my face and it’s baaaad. It’s like zaps, nerve pains, something going haywire. Shocks and buzzing, tugging. I can almost hear the turmoil. When my head wasn’t that bad I could push through but now it’s impossible. Back 2 months ago I just had some head pressure that wasn’t every day and not as bad. Now? Every day and the last days it’s been debilitating. I wonder if this will ever let up. Whether it’s a setback from what I took for my UTI or just my CNS being my CNS, I don’t know. All I know is that I am the worst I have ever been. I had veeeery bad waves and days but not like now. 

Edited February 2 by [Wi...]

[[ns...]]

6 minutes ago, [[W...] said:

And the wave continues. Apparently in this wave it’s my head that causes the most problems. If I do something or sit the pressure is in the back trying to electrocute me. It’s even painful. I honestly imagine a live wire stuck to my head doing that. When it builds up it’s like an electrical storm in my brain and it goes down my back. When I lie down it’s better but the pressure and weird sensations move to under my face and it’s baaaad. It’s like zaps, nerve pains, something going haywire. Shocks and buzzing, tugging. I can almost hear the turmoil. When my head wasn’t that bad I could push through but now it’s impossible. Back 2 months ago I just had some head pressure that wasn’t every day and not as bad. Now? Every day and the last days it’s been debilitating. I wonder if this will ever let up. Whether it’s a setback from what I took for my UTI or just my CNS being my CNS, I don’t know. All I know is that I am the worst I have ever been. I had veeeery bad waves and days but not like now. 

Willhealsoon. I'm so sorry. This is a difficult symptom. I've having it for I think a couple weeks off and on. It makes my hearing so bad, like being in a high frequency storm in my brain. I actually here high frequency sounds like when you turn the dial on an am radio and it squuels and whistles, strange. It's painful to say the least. It comes after I dose and last all day. Then it's off and on. The timing of the barometric pressure seems to be connected but idk.

I'm sorry you experience this terrible symptom.  I've found that just trying to sail thru it works best for me, trying ing to ignore it and not focus, but it's a tough one to ignore. It does help though if I keep busy while it's doing this. I'm seeing a few people having this lately. Interesting. 

I hope it subsides soon! 

Ns

[[dj...]]

16 minutes ago, [[W...] said:

And the wave continues. Apparently in this wave it’s my head that causes the most problems. If I do something or sit the pressure is in the back trying to electrocute me. It’s even painful. I honestly imagine a live wire stuck to my head doing that. When it builds up it’s like an electrical storm in my brain and it goes down my back. When I lie down it’s better but the pressure and weird sensations move to under my face and it’s baaaad. It’s like zaps, nerve pains, something going haywire. Shocks and buzzing, tugging. I can almost hear the turmoil. When my head wasn’t that bad I could push through but now it’s impossible. Back 2 months ago I just had some head pressure that wasn’t every day and not as bad. Now? Every day and the last days it’s been debilitating. I wonder if this will ever let up. Whether it’s a setback from what I took for my UTI or just my CNS being my CNS, I don’t know. All I know is that I am the worst I have ever been. I had veeeery bad waves and days but not like now. 

Other than the bit about the UTI, as I’m a man, I could have written this.  My head pressures and electrical stuff just took on a new life of their own the past few weeks.  It all gives me the worst brain fog too. 
 

I swear we’re on the same schedule with very similar symptoms. 

Edited February 2 by [dj...]

[[Wi...]]

10 minutes ago, [[d...] said:

Other than the bit about the UTI, as I’m a man, I could have written this.  My head pressures and electrical stuff just took on a new life of their own the past few weeks.  It all gives me the worst brain fog too. 
 

I swear we’re on the same schedule with very similar symptoms. 

I am sorry. I am hysterical with this because honestly feels like somebody is trying to electrocute me and my body tries to counteract it but can’t and there are terrible pressures in my head. I am so scared because it’s so bad and if it gets any worse I am not going to be able to stand it. 

[[Wi...]]

23 minutes ago, [[n...] said:

Willhealsoon. I'm so sorry. This is a difficult symptom. I've having it for I think a couple weeks off and on. It makes my hearing so bad, like being in a high frequency storm in my brain. I actually here high frequency sounds like when you turn the dial on an am radio and it squuels and whistles, strange. It's painful to say the least. It comes after I dose and last all day. Then it's off and on. The timing of the barometric pressure seems to be connected but idk.

I'm sorry you experience this terrible symptom.  I've found that just trying to sail thru it works best for me, trying ing to ignore it and not focus, but it's a tough one to ignore. It does help though if I keep busy while it's doing this. I'm seeing a few people having this lately. Interesting. 

I hope it subsides soon! 

Ns

Sorry you have that too, mine is so bad that when it build up it feels like something wants to jump out of my head. Impossible to ignore it at this level :/ it’s like somebody is pulling my brain. 

Edited February 2 by [Wi...]

[[ns...]]

3 minutes ago, [[W...] said:

Sorry you have that too, mine is so bad that when it build up it feels like something wants to jump out of my head. Impossible to ignore it at this level :/

I'm sooo sorry. I know how u feel I promise u. I just took my dose and it's bad again. My ears are screaming at me and that electrical storm is coming on. Just sitting reading and typing, going to try to ignore it before it gets worse. It usually helps but takes lots of distraction. 

I'm sorry your having this! 

Ns

[[Wi...]]

14 minutes ago, [[n...] said:

I'm sooo sorry. I know how u feel I promise u. I just took my dose and it's bad again. My ears are screaming at me and that electrical storm is coming on. Just sitting reading and typing, going to try to ignore it before it gets worse. It usually helps but takes lots of distraction. 

I'm sorry your having this! 

Ns

You seem to be so strong! I am not. I tried to be but it has all surpassed my capabilities. I am trying to ignore my head but it’s horrible. 

[[ns...]]

1 hour ago, [[W...] said:

You seem to be so strong! I am not. I tried to be but it has all surpassed my capabilities. I am trying to ignore my head but it’s horrible. 

Willhealsoon, oh I'm not strong hun I'm really not. I just know that I have to keep going or else! I'm in the car, my husband is driving to the store, I am miserable but I'm not staying home today. I won't be going in but I'm out of the house. 

I just push as Long as I can, I hope u can find your inner strength today, I'm thinking of you and I know how very hard thus is.

Dig really deep ok, change your focus if u can

Ns