Horrible wave

[[Wi...]]

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

Willhealsoon, hi, I've been reading about your symptoms. I'm going thru this as you described, electrical current... feels like I've been plugged in to an electrical socket!!! My core is no exception and my brain, my entire body inside and out! 

I read today about a woman who has this. She is in withdrawal as well.

Vibrating, intense abdominal spasms that travel up to my heart and feels as though I have too much electricity in it. She also described this. But the one thing she Said that got me excited, "I never knew how much energy our body has in it til now!"

We are super human! Lol , sorry I couldn't resist! But not everyone can feels this. 

 I feel the current u describe in the back of my head and down throughout my body and its tough to keep going.

We have to keep pushing thru this much I know.

I m so sorry your going thru this, it's terrible and i wish there was something we could do to make it stop!

I guess that's time and patience, distraction? 

Just when we think we've ran out of patience, out if strength to make it thru, we get that window to give us a break!

You'll get thru it, you're stronger than u know!

A hint, I eat cashew butter on bread once a day, it's seems to mellow me out some!nits full of magnesium!

Take care

Ns

Oh if only I could use the energy somehow  Unfortunately the moment the vibrations and sensations hit my head I am unable to do anything but lie down. 
 

Yesterday I had a day when I could do something and take care of my baby but still symptomatic mostly with the current being more on the side of internal burning between my brain and legs deep inside. However, it was bearable. The evening came with RLS, yuuuuck. It felt like someone war running electricity from the back of my knees down. Somehow it’s always the back of my body. When that hits it feels like my legs aren’t mine, like they are sort of numb but not quite. I feel everything normally when I touch them but they just feel off. Unfortunately when RLS hits it sets off the neuropathy in my feet. The combination is awful. 

[[ns...]]

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

Oh if only I could use the energy somehow  Unfortunately the moment the vibrations and sensations hit my head I am unable to do anything but lie down. 
 

Yesterday I had a day when I could do something and take care of my baby but still symptomatic mostly with the current being more on the side of internal burning between my brain and legs deep inside. However, it was bearable. The evening came with RLS, yuuuuck. It felt like someone war running electricity from the back of my knees down. Somehow it’s always the back of my body. When that hits it feels like my legs aren’t mine, like they are sort of numb but not quite. I feel everything normally when I touch them but they just feel off. Unfortunately when RLS hits it sets off the neuropathy in my feet. The combination is awful. 

Oh Willhealsoon, that's how I feel! I'm numb from the waste down. My doctor scared me to death, thought i had a spinal cord injury, i knew better but had to do that yucky exam! I'm numb inside and out but like u said, when I touch my leg or whatever, it feels normal. It's odd I know. The electricity stuff is what gets me but I just have to sit and be on here or another app to just keep myself up. Its hard to sit on my rear, im.numb!

I slept thru my 5am dose and didn't take it for 3 hrs and then tried to wait 6 hrs for the next one, what a mistake!!! I've Been back in big time withdrawal symptoms ever since, but tonight feels like I'm getting back on track. 

Remember when I said it's hard to take a shower because It's hard to walk or stand, this is why, the electricity stuff and numbness. 

You have to change your focus. It's still there but it brings the symptoms down so u can get thru it. We have to keep pushing thru unless our body tells us to rest but not too long. Dont give in to it, else you'll be stuck like that. Push yourself a little ok, tell yourself you are safe, your ok, its uncomfortable but your ok and you are safe. 

If u do, you'll see yourself doing more and more and making the day go by faster and having some quality time with your baby.

I actually went shopping yesterday, it was terribly hard, but important to do. This way I keep some normal in my life, getting new clothes, riding in the car, being in public. It's so important to keep.life moving.

I know these symptoms are bad ones, but you can get thru this ok, keep going, change your focus

Kiss that baby ok

Take care

Night

Ns

 

[[Wi...]]

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

Oh Willhealsoon, that's how I feel! I'm numb from the waste down. My doctor scared me to death, thought i had a spinal cord injury, i knew better but had to do that yucky exam! I'm numb inside and out but like u said, when I touch my leg or whatever, it feels normal. It's odd I know. The electricity stuff is what gets me but I just have to sit and be on here or another app to just keep myself up. Its hard to sit on my rear, im.numb!

I slept thru my 5am dose and didn't take it for 3 hrs and then tried to wait 6 hrs for the next one, what a mistake!!! I've Been back in big time withdrawal symptoms ever since, but tonight feels like I'm getting back on track. 

Remember when I said it's hard to take a shower because It's hard to walk or stand, this is why, the electricity stuff and numbness. 

You have to change your focus. It's still there but it brings the symptoms down so u can get thru it. We have to keep pushing thru unless our body tells us to rest but not too long. Dont give in to it, else you'll be stuck like that. Push yourself a little ok, tell yourself you are safe, your ok, its uncomfortable but your ok and you are safe. 

If u do, you'll see yourself doing more and more and making the day go by faster and having some quality time with your baby.

I actually went shopping yesterday, it was terribly hard, but important to do. This way I keep some normal in my life, getting new clothes, riding in the car, being in public. It's so important to keep.life moving.

I know these symptoms are bad ones, but you can get thru this ok, keep going, change your focus

Kiss that baby ok

Take care

Night

Ns

Btw, I also had weird muscle twitches in my calves yesterday, they were something new for me. Not spasms but forceful twitches. I had them in the past in different places especially in legs but they were milder. 
 

The weirdness in legs isn’t there all the time but comes and goes. Usually when my legs flare the back of my neck and head symptoms are better. So that’s something positive 🤣

 

I do all I can but there are things I can and I cannot push through. The head symptoms and electricity are a no go. When this wave began it just immobilised me. I used to walk up to 16k steps per day, now I haven’t been for a walk in a month. I tried going once but I barely made it back home after 10 minutes because the overstimulated feeling in my head was terrible and I had to lie down for an hour before it calmed down, I felt like I was about to vomit. Same thing happened when I had to look for my dogs that escaped one day. I had to go in a car and drive around and even though I found them after 15 minutes tops it was too much. I wonder how I could get so much worse all of a sudden. This wave has been the absolute worst one. 

It’s all connected with the electricity at the back of my head. It’s like sometimes it flares in my head and sometimes more down my body with these jolty movements. I haven’t had the head variation too bad for quite a few days now. Also the layer of electricity I spoke about earlier in my posts hasn’t been there for a while. The last few days I am definitely more functional than at the end of January and the beginning of February. But still not functional enough. 
 

There were a few things that needed to be sorted out. My husband tried to hide my condition away from his parents so as not to worry them, it was okay for me when I was functional but he had to finally tell them because he was running out of excuses why we weren’t visiting for weeks (and there were occasions such as mil’s bday, fil’s nameday, grandparents’ day). No details but told them I am not functional and I won’t be coming to visit them. You know, our kid has to see her other grandparents regularly, but I just can’t go and my husband was scared of going alone as it’s a 40-minute drive and she sometimes vomits in the car, so he was scared she would do that and he wouldn’t notice. They are thinking about solutions to that.

I also mustered the courage to announce that for now I am closing the business. That hurt. I needed to say something on my professional profiles in social media because potential clients kept messaging me. Got some supportive messages. But all that just devastated me. I had my own business and I can no longer run it. Damn. 
 

I just hope that one day I will be healed enough again to go out for walks, meetings and to work. I don’t even need to be all healed, just functional enough to live somehow. Now on better days I am stuck at home mostly sitting or lying on my couch but can do some cooking and look after the baby and watch TV. On bad ones I have to lie down either on my couch or in my bed and just brace myself and when worst is over try to distract.

Edited February 25 by [Wi...]

[[ns...]]

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

Btw, I also had weird muscle twitches in my calves yesterday, they were something new for me. Not spasms but forceful twitches. I had them in the past in different places especially in legs but they were milder. 
 

The weirdness in legs isn’t there all the time but comes and goes. Usually when my legs flare the back of my neck and head symptoms are better. So that’s something positive 🤣

I do all I can but there are things I can and I cannot push through. The head symptoms and electricity are a no go. When this wave began it just immobilised me. I used to walk up to 16k steps per day, now I haven’t been for a walk in a month. I tried going once but I barely made it back home after 10 minutes because the overstimulated feeling in my head was terrible and I had to lie down for an hour before it calmed down, I felt like I was about to vomit. Same thing happened when I had to look for my dogs that escaped one day. I had to go in a car and drive around and even though I found them after 15 minutes tops it was too much. I wonder how I could get so much worse all of a sudden. This wave has been the absolute worst one. 

It’s all connected with the electricity at the back of my head. It’s like sometimes it flares in my head and sometimes more down my body with these jolty movements. I haven’t had the head variation too bad for quite a few days now. Also the layer of electricity I spoke about earlier in my posts hasn’t been there for a while. The last few days I am definitely more functional than at the end of January and the beginning of February. But still not functional enough. 
 

There were a few things that needed to be sorted out. My husband tried to hide my condition away from his parents so as not to worry them, it was okay for me when I was functional but he had to finally tell them because he was running out of excuses why we weren’t visiting for weeks (and there were occasions such as mil’s bday, fil’s nameday, grandparents’ day). No details but told them I am not functional and I won’t be coming to visit them. You know, our kid has to see her other grandparents regularly, but I just can’t go and my husband was scared of going alone as it’s a 40-minute drive and she sometimes vomits in the car, so he was scared she would do that and he wouldn’t notice. They are thinking about solutions to that.

I also mustered the courage to announce that for now I am closing the business. That hurt. I needed to say something on my professional profiles in social media because potential clients kept messaging me. Got some supportive messages. But all that just devastated me. I had my own business and I can no longer run it. Damn. 
 

I just hope that one day I will be healed enough again to go out for walks, meetings and to work. I don’t even need to be all healed, just functional enough to live somehow. Now on better days I am stuck at home mostly sitting or lying on my couch but can do some cooking and look after the baby and watch TV. On bad ones I have to lie down either on my couch or in my bed and just brace myself and when worst is over try to distract.

Willhealsoon, I'm so sorry. It sounds like we have the same type of symptoms and I'm really sorry your going thru that. It's so difficult i know and it's hard to push through on certain days etc. We do the best we can, take it as it comes i guess and appreciate the good days.

I am a mother, grandmother and great grandmother so I understand. 

All we can do is the best we can do right? 

I too had spasms in my calve yesterday and it was twitching. Idk, I guess I over used it sitting wrong or stretching. 

Take care of that baby, try not to dwell on things we can't control and look to the future because it is bright!. 

Take care 

Ns

 

[[Wi...]]

Hi! So good news that I can take care of my girl a bit but I am still mostly stuck on couch. I haven’t had the electricity layer symptom in my body for over two weeks now, which is huge relief but I still feel horrible. Yesterday I went for a walk with one of my dogs because I really wanted to go to the forest on the verge of spring after a whole month of no walks and it was a bad idea. The pressure, pulling and squeezing in my brain is too bad still, like a magnet is behind my head. It’s either at the back or in my face. And when it’s very bad it goes into my throat and chest and just squeezes. It makes me feel almost off balance but not quite. I have horrible tension headaches every day in addition to the weird sensations. It’s like occipital neuralgia or something. I need to see a neurologist to check everything since this is a new symptom for me. I am scared of a tumor.
 

Unfortunately, the neuropathy in feet is still raging. It’s not constant but it’s there a lot. Right now I don’t feel it but the night was horrible.

 

I am seeing my chiropractor to see if it helps headaches. Today I had a session and he said I was extremely tense, needed dry needling. No relief as of yet but will report after a few sessions. 

Edited March 2 by [Wi...]

[[ns...]]

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

Hi! So good news that I can take care of my girl a bit but I am still mostly stuck on couch. I haven’t had the electricity layer symptom in my body for over two weeks now, which is huge relief but I still feel horrible. Yesterday I went for a walk with one of my dogs because I really wanted to go to the forest on the verge of spring after a whole month of no walks and it was a bad idea. The pressure, pulling and squeezing in my brain is too bad still, like a magnet is behind my head. It’s either at the back or in my face. And when it’s very bad it goes into my throat and chest and just squeezes. It makes me feel almost off balance but not quite. I have horrible tension headaches every day in addition to the weird sensations. It’s like occipital neuralgia or something. I need to see a neurologist to check everything since this is a new symptom for me. I am scared of a tumor.
 

Unfortunately, the neuropathy in feet is still raging. It’s not constant but it’s there a lot. Right now I don’t feel it but the night was horrible.

I am seeing my chiropractor to see if it helps headaches. Today I had a session and he said I was extremely tense, needed dry needling. No relief as of yet but will report after a few sessions. 

 

[[ns...]]

Just now, [[n...] said:

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

Hi! So good news that I can take care of my girl a bit but I am still mostly stuck on couch. I haven’t had the electricity layer symptom in my body for over two weeks now, which is huge relief but I still feel horrible. Yesterday I went for a walk with one of my dogs because I really wanted to go to the forest on the verge of spring after a whole month of no walks and it was a bad idea. The pressure, pulling and squeezing in my brain is too bad still, like a magnet is behind my head. It’s either at the back or in my face. And when it’s very bad it goes into my throat and chest and just squeezes. It makes me feel almost off balance but not quite. I have horrible tension headaches every day in addition to the weird sensations. It’s like occipital neuralgia or something. I need to see a neurologist to check everything since this is a new symptom for me. I am scared of a tumor.
 

Unfortunately, the neuropathy in feet is still raging. It’s not constant but it’s there a lot. Right now I don’t feel it but the night was horrible.

I am seeing my chiropractor to see if it helps headaches. Today I had a session and he said I was extremely tense, needed dry needling. No relief as of yet but will report after a few sessions. 

What happened to my comment? Darn it, I'm sorry Willhealsoon!

Take care

[[Wi...]]

 

Omg, the electrocution. It’s been terrible. Some days are more manageable but something is wrong all the time. Sometimes it’s more like “it sucks”, sometimes it’s more like “I can’t take another second of this”. The electricity is still originating at the back of my head and electrocuting either my head affecting cranial nerves that hurt like a mf or going down my body into my legs mostly. And into my chest and stomach. Either it’s this electric pressure or this weird internal burning. I feel terrible. It’s so strong. I honestly imagine a live wire stuck into the back of my head. It causes buzzing and all sorts of paresthesias in my body (zaps, itching, prickling, burning). It’s so strong that I feel like I will just pop and sometimes my back and other body parts start burning from the pressure. For some reason other than stomach and chest issues it’s mostly the back of my body from head to toe. Sometimes the pressure causes twitching and jerking probably to release the energy somehow. It’s not that strong all the time of course but it’s horrible anyway.

I wonder if this will ever end. It’s ridiculous. My last meds ever were 10 months ago (in the c-section) and this got 100 times worse over time. I am sure it got so bad once I started reducing breastfeeding in December because why else. Like maybe it would have been worse from the start but breastfeeding hormones kept covering the crap up. So now my hormones are stabilising and I hope that will help me heal. I am barely hanging on. I have a nervous breakdown every day. Hard to have hope not seeing many people with my symptoms and even when I do see them, many seem not to have healed. 

 

[[Wi...]]

Omg. I am hysterical. The electricity today. It’s not buzzing at all. It’s like I have current surging from my head down my body every few seconds like shocks. The back of my neck is frying. I don’t see myself surviving this. This is the worst it has ever felt. Everything is pulling and squeezing me inside. My brain is burning. Let it pass, please.

Edited March 12 by [Wi...]

[[Bo...]]

Sending healing wishes and may tomorrow be better. Hugs and I’m so sorry this is all just so inhumane. 

[[Sw...]]

@[ne...] it’s will totally get better! Be gentle on yourself because it really seems like your hormones are the culprit. They will go back to normal… it’s just post pregnancy stuff. Hormones are a huge part of brain chemistry! Have you started to cycle again since you’ve given birth?

[[Wi...]]

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

@[ne...] it’s will totally get better! Be gentle on yourself because it really seems like your hormones are the culprit. They will go back to normal… it’s just post pregnancy stuff. Hormones are a huge part of brain chemistry! Have you started to cycle again since you’ve given birth?

Yeah a long time ago. I bet it’s more like a combination of pregnancy and breastfeeding but not sure. But that seems to make sense. I am relieved that my hormones are going back to normal and the healing can kick off. 
 

I have a windowish evening. I still have itching and some skin annoying neuropathy-like crap but the electricity down my spine has calmed down significantly. It was terrible yesterday and today morning. Grateful for a little while of some relief. 

[[Sw...]]

@[ne...] that’s so good that you had some relief this evening. It all counts and is proof that the body CAN heal… and knows how to be normal. Just wish we knew how to make it longer lasting. On my good days or sometimes just good hours I am glad but annoyed my body won’t just stay in that state of being. I know I can’t grasp onto the enjoyment, I need to hold it loosely and be okay when the next hard hit comes. I believe in all the people who have had success stories tho and know it’s just about riding this out. It will definitely get better to the point of being normal again… one day…  

[[Wi...]]

Yeah, I’m back in hell again. Today it’s back to pressure and internal burning like liquid nitrogen at the back of my brain, down my spine into my chest. It’s nauseating. Plus weird brain surges or head rushes. Will it ever stop getting worse… So tired of this. 

Edited March 14 by [Wi...]

[[Wi...]]

And today deep electric pressure from my head down my body that feels like strong deep electricity is flowing through my body. I feel like I am going to explode. It’s the worst in my head and down my upper back and upper chest. I don’t know how to go on… I haven’t even stopped getting worse. It’s so unfair. What is it going to progress to? Full body? Then dystonia? Seizures? I have seen only deterioration. It’s been 19 months in this „setback”. 
I don’t think I will be here to see my daughter grow up. I don’t think there is any purpose in me posting here anymore. 

Edited March 15 by [Wi...]

[[Wi...]]

 

I have officially lost all hope I will ever improve. What I have is not any wd or anything that has a chance of healing since I even have trouble finding people who have this all over the internet, not just here. I was also polydrugged and it all began after Cipro, just got worse after additional meds, not just psych ones (from which I was pretty much healed). I believe I have extensive nerve damage and something very wrong with brain message processing. I am out of the wave I wrote about a while ago, no idea what that was, maybe anxiety, maybe sign of autonomic system damage or something that will happen more often, who knows. However, my baseline is terrible. I am back to severe symptoms in my head that are even worse now as they have spread all over my head plus I get severe issues in other body parts. 

My head is def a centre of all my problems. I have constant tension, tightening, squeezing, extreme pressure and nerve pain all over it. It started for good at the back not even a year ago, but at this point it’s back, sides, top, front including my nose and often giving me a feeling like my nose is trying to suffocate me and it makes me want to panic. With all this often comes nerve pain and burning inside my head, it seems like all my cranial nerves are affected in one way or another. Deep inside my nose started burning. My eyes feel off too, like I am just aware of my eyelids, same with my gums. All the pain is not severe yet for the most part but enough to make me want to not be here every single day seeing it is progressing quickly. Like the nose stuff began in January and happened twice that month and it’s here severely almost all the time now. I am constantly aware of my head and face, it honestly is impossible to relax any of these muscles, they are just clenched and I can feel my scalp and facial muscles just move by themselves, sometimes it’s these waves of goosebumps. It feels like all the wires in my head have been tampered with and are all wrong. When I try consciously relaxing head muscles it feels impossible and weird things start happening. My neck and shoulders hurt too, they are so stiff. Some days my entire upper body chest up starts feeling hot and burning. Severe paresthesia even down my arms for a few hours and then it goes away. I also get tightness in my throat, chest, stomach that feels like it might be anxiety induced but probably isn’t. It feels like either something is expanding inside me trying to rip me apart (comes with nausea too) or squeezing me from the outside. Either way, it feels like I will stop breathing. Sometimes it even burns in my chest. I have had this all for a longer while as it began happening over a year ago but at first it was like I had some stomach tightness for a few hours one day and then it was gone for days or weeks. Now? It’s here everyday, sometimes it’s just a hint of it, sometimes it’s plain awful and I feel like I am going crazy. I also get weird internal burning deep in my chest and stomach, I have no idea what burns but it’s an awful sensation. Again, not severe, but it’s just sinister, I am losing my mind when I have it and over time I have started experiencing it a lot of the time. Nobody should be feeling such things. It sometimes makes me feel nauseous in a very weird way, like the sensation is so disgusting it makes me want to puke. Maybe it’s an injured vagus nerve, I don’t know. But something feels of especially on the line consisting of my head, throat, chest and stomach.

I tried massages for my upper back and neck in hope it would help the tensions in my head but it does absolutely nothing. Still all the same issues, no relief at all. Everything is tense af. Sometimes my legs get restless, twitchy, like I am losing power in them, they start spasming all of a sudden after being fine for days. Sometimes I get kind of jolty like the tensions just want to get released somehow. My symptoms definitely changed compared to when this all began. In a way many things are better as some symptoms are gone but in another they are way worse because some issues are constant. For example my head issues are constant and worsening week by week. Just sensations and intensity change. But it’s hell. Just hell. The vibrations come and go. One week they aren’t there as much, another they feel awful. I also get other issues as a great addition to the main ones. My nervous system is just a mess.

 

All in all, I am a wreck. I started deteriorating significantly since January this year. Like life went from hell to deeper hell. I see absolutely no hope and zero sense in living like this. I feel I am getting worse every single day. Like even today I woke up and feel weird burning inside my head in an area that hasn’t been affected before. I have no idea how what I have is not detectable in any tests. How I can be told I am healthy when my life consists in surviving in fear every single day rather than living. Sorry for all doom and gloom but it’s my reality. Nobody in my life understands this. I am a shell of a person and I have lost myself. I no longer recognise myself in the mirror. I hate myself too, like how I could be so naive as to trust doctors. I live in constant fear of what will happen to me. How long I will manage to stand this. I even hate myself for having my baby because I feel I am trapped here. I am hanging on by a thread and the thread is my baby. My old life is gone, I even have trouble remembering how I could just live before. I feel like these memories belong to someone else. I used to be so normal. Now who even am I?

 

Everyone around me even if they believe me seems to be like yeah okay you have been hurt by meds, sorry for that, but hey, you know, life goes on and you have to learn to live with this. But it’s not possible. It just isn’t. Not with this, not like this, not for me. I get an impression many people are annoyed with me already, like they just want to tell me to pull myself together at last. They have no idea how dire this is. 

 

Having it all caused by meds is a sick joke. Like if I had never made the connection I would be gulping down everything they gave me to find any tiniest relief. But the situation is different so I see zero hope in finding any help.

 

[[ca...]]

On 24/05/2024 at 02:08, [[W...] said:

giving me a feeling like my nose is trying to suffocate me and it makes me want to panic. With all this often comes nerve pain and burning inside my head, it seems like all my cranial nerves are affected in one way or another. Deep inside my nose started burning. My eyes feel off too, like I am just aware of my eyelids, same with my gums. All the pain is not severe yet for the most part but enough to make me want to not be here every single day seeing it is progressing quickly. Like the nose stuff began in January and happened twice that month and it’s here severely almost all the time now.

hello! i've been experiencing EXACTLY this for about 2-3 months now. i feel like i'm holding my breath on top of my nose burning. i NEVER had this before and during benzos, it only happened months after i stopped. i stopped cold turkey in August 2023 and so i'm currently 10 and 1/2 months off of benzos and SSRIs (which i've only been using for a year and 4 months separately and at low doses.) its SERIOUSLY very annoying that this is happening to me.

how are you doing now? hope you're doing better!

[[Wi...]]

On 19/07/2024 at 08:40, [[c...] said:

hello! i've been experiencing EXACTLY this for about 2-3 months now. i feel like i'm holding my breath on top of my nose burning. i NEVER had this before and during benzos, it only happened months after i stopped. i stopped cold turkey in August 2023 and so i'm currently 10 and 1/2 months off of benzos and SSRIs (which i've only been using for a year and 4 months separately and at low doses.) its SERIOUSLY very annoying that this is happening to me.

how are you doing now? hope you're doing better!

Nah, I have been diagnosed with occipital neuralgia and I have a lot of other neuropathic issues going on. But mine wasn't from benzos.