Horrible wave

[[ns...]]

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

You really should read this, amazing!

I hope it helps 

 

You will be amazed and I think this will help answer so many questions we all have

https://www.benzoinfo.com/ashtonmanual/chapter3/#sensory-hypersensitivity

Edited January 15 by [ns...]
Addition

[[ns...]]

On 12/01/2024 at 13:02, [[D...] said:

Thank You, it seems no one around me can understand the terror I feel, terror with everything, even talking on phone, or texting.  

Here's the right link

https://www.benzoinfo.com/ashtonmanual/chapter3/#sensory-hypersensitivity

 

Gave everyone the wrong link. 

Great source of information here for all of us!

[[Wi...]]

I am long off and it even wasn’t caused by wd I think but adverse reactions and it was retriggered by another adverse reaction :/ So I have weird chronic neurological dysfunction that seems to be getting worse and worse. 

I had a terrible night. I barely slept and even when I did I dreamed about RLS. My legs have a life of their own since yesterday afternoon. I had a similar wave back in September/October when my legs bothered me so much. I can feel steady electricity going down them from my neck down or lower back down. Like a deep buzzing vibration. And they twitch. No terror but they feel so yucky. Usually symptoms change after I get up so scared to even see what’s in store for me today. 

I must have eaten or touched something during Xmas time that f’d me up because omg I am sooooo bad. Please let this wave end  I guess the only way for me to heal is clean my diet 100% and I don’t know, stop using any chemicals like cosmetics. What the hell. 

[[Ma...]]

Hi there 

I am February 13 months off and I also am in a wave of aka but it’s on and off during the day. 
screaming inside and intolerant to be surrounded by people. 
for me i think it’s triggered by the flu or COVID. 
met full body feels like it’s both exploding as pressed to death . Ballooning. As if my skin is pumped up everywhere head to toe while it’s pressed on. 
 

Keep going , hang in there. 
We Will heal even though it takes forever. 
do u have any help with your baby ?

[[dj...]]

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

I am long off and it even wasn’t caused by wd I think but adverse reactions and it was retriggered by another adverse reaction :/ So I have weird chronic neurological dysfunction that seems to be getting worse and worse. 

I had a terrible night. I barely slept and even when I did I dreamed about RLS. My legs have a life of their own since yesterday afternoon. I had a similar wave back in September/October when my legs bothered me so much. I can feel steady electricity going down them from my neck down or lower back down. Like a deep buzzing vibration. And they twitch. No terror but they feel so yucky. Usually symptoms change after I get up so scared to even see what’s in store for me today. 

I must have eaten or touched something during Xmas time that f’d me up because omg I am sooooo bad. Please let this wave end  I guess the only way for me to heal is clean my diet 100% and I don’t know, stop using any chemicals like cosmetics. What the hell. 

I feel for you.  This stuff has a mind of its own.  You’ll drive yourself crazy trying to analyze what you may have done to bring on this wave.  It will work itself out.  Hang in there.  

[[ns...]]

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

I am long off and it even wasn’t caused by wd I think but adverse reactions and it was retriggered by another adverse reaction :/ So I have weird chronic neurological dysfunction that seems to be getting worse and worse. 

I had a terrible night. I barely slept and even when I did I dreamed about RLS. My legs have a life of their own since yesterday afternoon. I had a similar wave back in September/October when my legs bothered me so much. I can feel steady electricity going down them from my neck down or lower back down. Like a deep buzzing vibration. And they twitch. No terror but they feel so yucky. Usually symptoms change after I get up so scared to even see what’s in store for me today. 

I must have eaten or touched something during Xmas time that f’d me up because omg I am sooooo bad. Please let this wave end  I guess the only way for me to heal is clean my diet 100% and I don’t know, stop using any chemicals like cosmetics. What the hell. 

Willhealsoon I'm sorry to hear u are suffering so much, below is a link.that think might be of some help to u, I know it helped me.

I had many of your symptoms last go around 3 yrs ago, I didn't understand then but finding this Information has helped me so much.

I hope u get relief soon and hope this information will help u.

Take care

Ns

https://www.benzoinfo.com/ashtonmanual/chapter3/#sensory-hypersensitivity

[[Wi...]]

4 hours ago, [[M...] said:

Hi there 

I am February 13 months off and I also am in a wave of aka but it’s on and off during the day. 
screaming inside and intolerant to be surrounded by people. 
for me i think it’s triggered by the flu or COVID. 
met full body feels like it’s both exploding as pressed to death . Ballooning. As if my skin is pumped up everywhere head to toe while it’s pressed on. 
 

Keep going , hang in there. 
We Will heal even though it takes forever. 
do u have any help with your baby ?

Oh I hope we will but I am so over it.

I do have help, my mum often comes and my husband when he comes back from work. I already have no idea what I have, probably a hint of aka but also other issues aka people don't describe. I hate this.

Obviosly the symptoms changed. My legs are fine for now, like nothing happened (I mean I can feel something in them as always but it can be ignored). But instead today I had a flare of electrocution which is completely different than the buzzing. Not many people seem to have it so I guess it's something more sinister. Traumatized80 had similar descriptions of that sensation. My cells are sizzling and burning in my entire body, now not as much but it was terrible earlier. It wasn't literally everywhere but it felt like my spinal cord and brain were on fire inside. It spread to bones in arms and upper legs, this literally feels like heartburn but in bones. Like this weird toxic and almost electric burn. On top of that pain develops in my arms and upper body and it burns and is horrible like a snake bite spreading. I have had it for over a year already with breaks but each flare of it is exruciating. This is ridiculous, I am getting worse even though I am not taking a thing and even when I get better periods, they only happen to tell me "just kidding, mf" and I fall even deeper into shit. My brain feels like it's attacking me. 

I cannot focus on anything. I had health anxiety prior to that and now it's next level. I am constantly googling, searching forums, reddit, fibromyalgia forums, ans so on, trying to find people with my symptoms that healed and not much success. 

Anyone here, especially more into protracted wd who somehow manages to keep their hopes up despite having bad symptoms still? I am tired of symptoms and of my frantic behaviour when they happen.  Maybe I am making these sympoms worse by my apprehensive behaviour, I don't know. But how not to panic over it?

Like I said, I don't have adrenaline surges/chemical terror or anything of that kind most days, but my anxiety and fear stem from my physical symptoms.

[[Wi...]]

I am seriously getting new symptoms. The night was awful. It felt like I was going to have some kind of a neurological attack and it felt like my blood was sizzling(not buzzing) plus I had burning in my arms and upper chest. But a painful kind. It also climbed up the sides of my head and ears. I am too scared to live in fear of what the next day brings as my symptoms are already not liveable. I just cry and cry. I think I developed central sensitization and that’s why it keeps getting worse. I was also wondering - when I was busier - I had a lot of work I just couldn’t not do - that’s when my symptoms got weaker. My wave began right after I stopped having a lot of work. So my focus on it might be making it so bad?  

Edited January 16 by [Wi...]

[[ns...]]

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

I am seriously getting new symptoms. The night was awful. It felt like I was going to have some kind of a neurological attack and it felt like my blood was sizzling(not buzzing) plus I had burning in my arms and upper chest. But a painful kind. It also climbed up the sides of my head and ears. I am too scared to live in fear of what the next day brings as my symptoms are already not liveable. I just cry and cry. I think I developed central sensitization and that’s why it keeps getting worse. I was also wondering - when I was busier - I had a lot of work I just couldn’t not do - that’s when my symptoms got weaker. My wave began right after I stopped having a lot of work. So my focus on it might be making it so bad?  

Willhealsoon,  yes it is I'm sure your focus on these symptoms. Need to find something to keep u busy. I also have to keep my mind and hands busy, can't do alot of physical things but I can read, watch TV, get on here to talk to people, get on my computer, some people knit. It just depends on what u can do. I play piano and guitar and sing, I can't do any of these right now, too hard on my ears as well.as my body won't be still long enough, too jerky and lack coordination. 

So I hope you can take your mind off of your symptoms as much as possible and focus on something else. It's hard but you can do it! 

Take care

Ns

[[Wi...]]

 

Wondering if this wave will ever calm down or it’s my new „normal” I did have a horrific wave similar to this one a year ago but back then I could still blame it on the antibiotic I took a while prior. After that wave calmed down I was doing a LOT better and was in a windrow for 2,5 months with very mild waves within it. Like very very mild. Then 6 weeks after labour another horrific one began and lasted… well it never calmed down enough to call what came a window, but let’s say it lasted almost 4 months. So for that I blamed hormones and meds used in labour. I got better, good enough to be functional but far from healed and as I posted before in this thread I started having a lot of windowish days that totaled 26 out of 60 days, which was a huge success compared to the wave I had been in before with just hours of windows or nothing. Waves within that window were still brutal but short and always passed. 

Now I cannot really find anything to blame for the wave I am in now. But it feels exactly as if I ingested something that f’d my sensitive CNS up. Maybe it’s just a random wave but feels so bad. 

I am trying to make out a pattern here because for me days don’t look the same, I don’t have the same symptoms 24/7 and they change but there is always something. I go through at least a few of these every day. In the more windowish time my flares are still bad but windows are like the above sensations are weak and last only a short while and it’s usually one or two symptoms only in one day whereas in a wave it’s all just higher intensity and the number of symptoms in a day is definitely higher. 

 

It alternates between my upper body and lower body in general and the specific symptoms are: 

- deep buzzing at the back of my body from head down to lower legs that is uncomfortable but non-anxious (easier to tolerate) and makes me kind of shaky 

- head pressure spreading down my back, when very bad the back of my head has burning and pins and needles and a lot of vague nerve pain (can be horrific)

- more diffuse pressure in my entire back sort of spreading from the head, not necessarily buzzing but can be sort of like sizzling, I don’t know how do describe this but it’s so weird that I can almost hear it, sometimes it causes prickly feeling or even burning but not too severe, it feels like my spinal cord or vagus nerve is being pumped or something (can be mild but also very bad) 

- very bad RLS like buzzing in my legs (drives me crazy and prevents me from having a decent sleep when it’s exceptionally bad)

- deep burn in my CNS that feels like someone put acid in my brain and it’s spreads down my spinal cord and into my limbs - it kind of glows in different places, sometimes it’s more diffuse, sometimes locates somewhere specifically (horrific, one of my worst symptoms)

- worse paresthesias - it consists of intense skin pain, burning, itching, stinging, shocks (this can get pretty bad but flares for a while and the goes away for weeks)

- lighter paresthesias - feels like they are connected with the deep buzzing and it feels like prickling, tingling, spiders crawling (when this flares it’s usually easy to tolerate)

- aka sensations focusing in my arms, ranging from mild electric-like discomfort or pressure to very bad burning that makes me kind of panicky (hate this when it gets bad), when it’s bad it also spreads to my upper chest and front of neck and causes burning and paresthesias there, this can lead to the feeling of anxious explosions but it’s not as frequent knock on the wood 

- aka sensations focusing in my lower back, butt, usually a mild electric-like discomfort or pressure, sometimes it gets worse but not that often, it also goes ino my thighs or calves sometimes 

- anxiety sensations in stomach, they feel more like some anxious vibrations, pressure, however the intensity is still not as bad as could be (hate this but it usually lasts for a shorter while) 

- tension and pressure in my upper back, it used to be worse and feel like the aka sensations but now it’s more on the pain side and often leads to pain  

- electricity in my CNS that feels like my entire being is altered, I have no words to describe this tbh, it’s like my body gets quiet, but it’s very sinister like calm before the storm, it doesn’t feel like buzzing but everything is sort of short circuiting, and feels like I am going to have some kind of an attack, a seizure, when this hits I usually get a lot of pain too, when it happens at night I feel like I am having out of body experiences (also one of my worst symptoms because it’s so unnatural)

- some adrenal-like surges but that doesn’t happen much 

- horrible bone crushing pain in upper body, sometimes it feels like toothache in muscles, sometimes it’s burning, tearing, tension but in general it’s so much pain that I sometimes feel like I am going to collapse. It often comes with the internal burning

- twitching of different muscles but that for some reason only comes in bad and long waves.

 

Has anyone seen anyone with such symptoms that healed? Note that I am a polydrugged person that reacted to non-psych meds in a terrible way and that’s what made me so bad. As a reminder - I was originally harmed by Cipro, which apparently can work like benzo on the receptors, and then by unsuccessful trials of ADs and anticonvulsant WD - but that had healed a lot by the time when my setback or rather worsening happened. Then it was clomid that sent me to hell and then 3 mo later I had an antibiotic. So those two were the reason why I am so bad. I blame myself for taking the stupid clomid all the time but on the other hand I wouldn’t have my daughter with me had it not been for that. 

 

Edited January 17 by [Wi...]

[[dj...]]

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

Wondering if this wave will ever calm down or it’s my new „normal” I did have a horrific wave similar to this one a year ago but back then I could still blame it on the antibiotic I took a while prior. After that wave calmed down I was doing a LOT better and was in a windrow for 2,5 months with very mild waves within it. Like very very mild. Then 6 weeks after labour another horrific one began and lasted… well it never calmed down enough to call what came a window, but let’s say it lasted almost 4 months. So for that I blamed hormones and meds used in labour. I got better, good enough to be functional but far from healed and as I posted before in this thread I started having a lot of windowish days that totaled 26 out of 60 days, which was a huge success compared to the wave I had been in before with just hours of windows or nothing. Waves within that window were still brutal but short and always passed. 

Now I cannot really find anything to blame for the wave I am in now. But it feels exactly as if I ingested something that f’d my sensitive CNS up. Maybe it’s just a random wave but feels so bad. 

I am trying to make out a pattern here because for me days don’t look the same, I don’t have the same symptoms 24/7 and they change but there is always something. I go through at least a few of these every day. In the more windowish time my flares are still bad but windows are like the above sensations are weak and last only a short while and it’s usually one or two symptoms only in one day whereas in a wave it’s all just higher intensity and the number of symptoms in a day is definitely higher. 

It alternates between my upper body and lower body in general and the specific symptoms are: 

- deep buzzing at the back of my body from head down to lower legs that is uncomfortable but non-anxious (easier to tolerate) and makes me kind of shaky 

- head pressure spreading down my back, when very bad the back of my head has burning and pins and needles and a lot of vague nerve pain (can be horrific)

- more diffuse pressure in my entire back sort of spreading from the head, not necessarily buzzing but can be sort of like sizzling, I don’t know how do describe this but it’s so weird that I can almost hear it, sometimes it causes prickly feeling or even burning but not too severe, it feels like my spinal cord or vagus nerve is being pumped or something (can be mild but also very bad) 

- very bad RLS like buzzing in my legs (drives me crazy and prevents me from having a decent sleep when it’s exceptionally bad)

- deep burn in my CNS that feels like someone put acid in my brain and it’s spreads down my spinal cord and into my limbs - it kind of glows in different places, sometimes it’s more diffuse, sometimes locates somewhere specifically (horrific, one of my worst symptoms)

- worse paresthesias - it consists of intense skin pain, burning, itching, stinging, shocks (this can get pretty bad but flares for a while and the goes away for weeks)

- lighter paresthesias - feels like they are connected with the deep buzzing and it feels like prickling, tingling, spiders crawling (when this flares it’s usually easy to tolerate)

- aka sensations focusing in my arms, ranging from mild electric-like discomfort or pressure to very bad burning that makes me kind of panicky (hate this when it gets bad), when it’s bad it also spreads to my upper chest and front of neck and causes burning and paresthesias there, this can lead to the feeling of anxious explosions but it’s not as frequent knock on the wood 

- aka sensations focusing in my lower back, butt, usually a mild electric-like discomfort or pressure, sometimes it gets worse but not that often, it also goes ino my thighs or calves sometimes 

- anxiety sensations in stomach, they feel more like some anxious vibrations, pressure, however the intensity is still not as bad as could be (hate this but it usually lasts for a shorter while) 

- tension and pressure in my upper back, it used to be worse and feel like the aka sensations but now it’s more on the pain side and often leads to pain  

- electricity in my CNS that feels like my entire being is altered, I have no words to describe this tbh, it’s like my body gets quiet, but it’s very sinister like calm before the storm, it doesn’t feel like buzzing but everything is sort of short circuiting, and feels like I am going to have some kind of an attack, a seizure, when this hits I usually get a lot of pain too, when it happens at night I feel like I am having out of body experiences (also one of my worst symptoms because it’s so unnatural)

- some adrenal-like surges but that doesn’t happen much 

- horrible bone crushing pain in upper body, sometimes it feels like toothache in muscles, sometimes it’s burning, tearing, tension but in general it’s so much pain that I sometimes feel like I am going to collapse. It often comes with the internal burning

- twitching of different muscles but that for some reason only comes in bad and long waves.

Has anyone seen anyone with such symptoms that healed? Note that I am a polydrugged person that reacted to non-psych meds in a terrible way and that’s what made me so bad. As a reminder - I was originally harmed by Cipro, which apparently can work like benzo on the receptors, and then by unsuccessful trials of ADs and anticonvulsant WD - but that had healed a lot by the time when my setback or rather worsening happened. Then it was clomid that sent me to hell and then 3 mo later I had an antibiotic. So those two were the reason why I am so bad. I blame myself for taking the stupid clomid all the time but on the other hand I wouldn’t have my daughter with me had it not been for that. 

 Can relate to almost everything here. There is so much going on with my CNS today that I can’t even describe.  I could tell it to a doctor but they would just look at me weird.  I have weird electricity stuff going on and it’s almost like my entire body is frozen and numb, and I’m mentally very confused.  Whatever drug this is would be great for torture in a Russian gulag.  

[[Wi...]]

8 hours ago, [[d...] said:

 Can relate to almost everything here. There is so much going on with my CNS today that I can’t even describe.  I could tell it to a doctor but they would just look at me weird.  I have weird electricity stuff going on and it’s almost like my entire body is frozen and numb, and I’m mentally very confused.  Whatever drug this is would be great for torture in a Russian gulag.  

Sorry you have most of it too, it’s a torture. Exactly, it’s like getting tortured. Yeah it sure feels like it when the sinister electric starts going off I am frozen. 

Damn! My baby is in a phase where she started yelling all of a sudden and geez that’s rough. Even happy yelling but sometimes whining looks like that too. Tolerating that when you are healthy is a feat because the shriek is so peircing, let alone when you feel bad. Eat plugs have been my friend since yesterday. 

Yesterday was a bad day that I could tolerate better and not a horrible one. But still bad symptoms especially in the first half of the day. However, later on I could go for a walk with my daughter and then with my dogs. Today I have just got up and can already feel this crap travelling my body and looking for a place to focus on. Probably today it’s going to be my upper body. Yesterday I went through lower back discomfort, then my mid section and ribs felt uncomfortable, then head pressure began with these horrible kind of electric jolts going down my back, then my entire back from head to calves kept buzzing, then paresthesias hit and weird sensations started focusing on my upper back and right before bed it was a bit in my biceps again. A lot of head pressure most of the day. I can tolerate all of these sensations if they are milder but this wave is really bad with all of them being more intense than in the past months. Normally I was okay with “it will pass” attitude but now it’s harder because while it does pass, it’s usually replaced by something as intense. Omg really I wonder if this wave will ever lift. The similar one in terms of symptoms and intensity I had last winter  Feb/March finally lifted and I had that loooong window. I am not even counting on that happening but please at least let the intensity go down. 

Edited January 18 by [Wi...]

[[Wi...]]

 

Omg I felt a lot better yesterday evening but today omg. I feel like my CNS is trying to fry me. I am hysterical. I feel electrocuted and I am not talking about vibrations. It’s the strongest it’s ever been. It’s like it starts in the base of my neck and buzzes in my head and down into my arms and back and it’s like my whole being is electrified. It feels like it can still get much worse. I am being shocked. Like electricity sizzling in my cells in my upper body mostly (arms and back) like I am holding an electric fence or something. I cannot go on like this. It’s too much. It’s not liveable. I haven’t done anything to cause such a setback.

 

 

 

 

[[Wi...]]

I cannot keep on doing this. My symptoms are more brutal than ever. It’s not liveable. I don’t understand why my issues get worse with time. I see no way out of this. 

[[Re...]]

Hang in there @[Wi...]! I myself did not know how to get through the past few days, everything came back, I thought these were gone.

I turned myself to autopilot, crawled up in bed (absolutely not typical for me), turned on a Jenniffer Swan YouTube video, and that's all I did... 

I understand you have a baby to look after, I can not imagine that, but you have all my deepest respect for going through this and doing the worlds most difficult job, ever!!! 

[[dj...]]

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

I cannot keep on doing this. My symptoms are more brutal than ever. It’s not liveable. I don’t understand why my issues get worse with time. I see no way out of this. 

My thoughts today too.  I feel like we are on such a similar schedule with so many of the same symptoms.  My physical symptoms are 1,000% getting worse and I’m 15.5 months out.  Thing really started snowballing about 5-6 weeks ago.  I am so stiff, so fatigued and the slightest bit of physical activity (like walking in and out of the grocery store) is enough to set off that internal buzzing/electricity.  My insides feel like they are in constant motion. 
 

I’m really frightened and I don’t scare easy. 

Edited January 21 by [dj...]

[[Wi...]]

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

My thoughts today too.  I feel like we are on such a similar schedule with so many of the same symptoms.  My physical symptoms are 1,000% getting worse and I’m 15.5 months out.  Thing really started snowballing about 5-6 weeks ago.  I am so stiff, so fatigued and the slightest bit of physical activity (like walking in and out of the grocery store) is enough to set off that internal buzzing/electricity.  My insides feel like they are in constant motion. 
 

I’m really frightened and I don’t scare easy. 

I am terrified. I see zero hope because all my issues started slowly and built up and I can barely stand them now and I don’t know how to cope any longer…

My head pressure was pretty disturbing from the start but only in the last 3 weeks has it become unbearable and it feels like something trying to get out of my head, intense pressure. It even spreads to the front, which was never the case. 
 

I hate my life. I hate it. 

Edited January 21 by [Wi...]

[[dj...]]

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

I am terrified. I see zero hope because all my issues started slowly and built up and I can barely stand them now and I don’t know how to cope any longer…

My head pressure was pretty disturbing from the start but only in the last 3 weeks has it become unbearable and it feels like something trying to get out of my head, intense pressure. It even spreads to the front, which was never the case. 
 

I hate my life. I hate it. 

I get it and have the same sentiments. Hope is all I’ve got right now.  Let’s support each other.  Do you care for your child by yourself?  That’s got to be impossible.  Mine are 10 and 12 and can help themselves for the most part, and I only have them three days a week.  No way I could do it alone.  

[[Wi...]]

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

I get it and have the same sentiments. Hope is all I’ve got right now.  Let’s support each other.  Do you care for your child by yourself?  That’s got to be impossible.  Mine are 10 and 12 and can help themselves for the most part, and I only have them three days a week.  No way I could do it alone.  

No, during weekends my husband mostly takes over now and every day my mum comes to help because I asked her to. God, in Nov and Dec I was able to take care of her, my dogs, it wasn’t that bad. I had symptoms but even worst days weren’t like now. It’s a nightmare. 
 

I couldn’t do it alone.

[[ns...]]

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

I cannot keep on doing this. My symptoms are more brutal than ever. It’s not liveable. I don’t understand why my issues get worse with time. I see no way out of this. 

Willhealsoon, I'm right there with u! What you are describing is exactly what I'm going thru the past couple weeks with each day getting stronger symptoms. 

I lost it last night, really lost it. I've never cried so hard at my inability to control something. I think that may be where I'm going wrong, thinking I can control these symptoms. I know better not to focus, but to keep my hands and mind busy. My face feels like tight stinging paper, I saw myself in a bright lit mirror last night and that's when I lost it! I look like I've aged 15 yrs at least. My long blonde hair is falling out everyday, I've lost too much weight, can't eat foods I usually eat and the list is growing. I think my current diet is hurting me with too many b vit and niacin, manganese. Going to get tests done this week if I can walk. I'm eating all healthy fats and fiber, wheat. Nut butters, I think it's over board but I have no choice, Histamine foods are not working for me. I think the stinging is from Histamine but can't tell.

The stinging sounds like you, the tightness in my arms, neck, back and belly are relentless. The jerking movements are hyperactive and I hit myself or knock my hands against something and it's painful. I felt like I must be dying, like a cancer taking pieces of me everyday. 

Then I remember, this is withdrawal. Taking a medication that I'm allergic to or whatever this is. I'm almost finished tapering, thinking of jumping off, they are killing me but what to expect if i do scares me even more.

The symptoms will get easier and change i know. We have to keep.our focus elsewhere. 

I'm so sorry for you, I know how this feels. You have a baby, it must be so difficult for you. 

Try to rest, eat as much as u can for endurance and try not to symptoms focus as much as possible.  For now. That's all we can do.  They say these symptoms can't hurt you, I guess not, sure feels like they can. Ashton says they can't.

When I'm typing I am distracted, it helps.

I pray your symptoms will subside soon! And mine too!

Ns

[[su...]]

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

I am terrified. I see zero hope because all my issues started slowly and built up and I can barely stand them now and I don’t know how to cope any longer…

My head pressure was pretty disturbing from the start but only in the last 3 weeks has it become unbearable and it feels like something trying to get out of my head, intense pressure. It even spreads to the front, which was never the case. 
 

I hate my life. I hate it. 

@[Wi...] My head pressure is the exact same. It has been the one constant symptom during and post taper. I’m really struggling. It’s affecting my quality of life 

[[ns...]]

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

@[Wi...] My head pressure is the exact same. It has been the one constant symptom during and post taper. I’m really struggling. It’s affecting my quality of life 

I'm so sorry you are suffering! This is the most difficult experience I've ever been thru and that's saying alot. I hope your head feels better soon, mine feels like its going to explode! The barometric pressure is changing and it affects my symptoms.  It had to be winter time I guess, but I do pray for better weather.

Be well, try not to focus on the symptoms, they will pass soon I know they will!

Ns

[[wi...]]

Does you guys head pressure ever fee like it squeezes inward as opposed to outward if that makes any sense?

also. I get that painful tight squeeze on other muscles and areas, too.

like there are wood clamps/vices all over.

its tight and weird.

super uncomfortable and mixed with prickly currents in my body 

[[ns...]]

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

Does you guys head pressure ever fee like it squeezes inward as opposed to outward if that makes any sense?

also. I get that painful tight squeeze on other muscles and areas, too.

like there are wood clamps/vices all over.

its tight and weird.

super uncomfortable and mixed with prickly currents in my body 

Yes! Widesky, I get that and I have that. And I gave stinging all over my face and head like bees! My face feels like paper, it feels dry and tight but tight it's not lol, I have tight muscles and squeezing in my muscles,  kind of a spasm but tight, it feels like a draw string above me pulling as tight as possible and tightens my whole upper body. My legs mostly right are numb, tingling on my butt, hip and to my foot. My eyes are hot! My neck and head are tight squeezing in my head.

Feels like electric shocks, like lightening. I've noticed with the pressure changing in the weather it's worse. So it's winter time. Going to go thru it for awhile I guess.  Just trying to keep busy sitting here with the phone, typing away, distraction I guess. Trying not to focus too much. 

Yes, we are going thru it! I'm sorry you are having so much pain.

Praying for everyone here to heal soon

Take care 

Ns

[[Wi...]]

I will be shocked if I ever get better. 
 

Yesterday pressure at the back of my neck/head and in a few other places (chest, throat). Felt terrible. Like electricity from a live wire was flowing there. But it was not a vibration, just electric pressure. In the evening it changed to paresthesia in my skin, which was a huge relief… Today has been horrific, though. I feel like my brain has been fried. No pressure but weird sensations at the back of my head again (not pressure but more like an electric storm, burning) plus all over internal feeling of I don’t even know what, maybe fiery electrified acid in veins. Feels like I am going to have a seizure or something. It hit me like truck, I am not able to move now because moving overwhelms me and causes this burning toxic pain in my upper body. It feels like my muscles or joints are going to tear when I use them. Severe overstimulation and fatigue with it. Feels like my brain is trying to electrocute me and I keep getting very weird pressures, pains and what not over my upper body. 

Meds ruined my life. I don’t know what has happened but it doesn’t stop getting worse. Like I am falling apart inside. Zero improvement, only deterioration. I am here just for my baby. Just for her. 

Edited January 26 by [Wi...]