Horrible wave

[[Fr...]]

On 12/01/2024 at 16:02, [[[...] said:

Thank You, it seems no one aroun9d me can understand the terror I feel, terror with everything, even talking on phone, or texting.  

So so sorry I have same feelings and think I am going mad and don't feel hopeful for future.  Constant buzzing or vibration .   I think it withdrawal and back on it.  But I also saw some vids on you tube that it can be your spinal column or neck ...called : Caring medical & Hauser Neck Centre.

[[dj...]]

2 hours 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. 

I made a neurologist appointment for Monday.  I can’t deal with all this head tingling, prickling, pressure, brain fog.  It exacerbates my DPDR too.  I feel confused and like I’m hallucinating.  
 

I may give in to an anticonvulsant like Trileptal or something.  I hate being on a medication I ultimately don’t need, but I’ve got to get through this.  Those meds calm down nervous system activity through sodium channels. 

[[ns...]]

1 minute ago, [[d...] said:

I made a neurologist appointment for Monday.  I can’t deal with all this head tingling, prickling, pressure, brain fog.  It exacerbates my DPDR too.  I feel confused and like I’m hallucinating.  
 

I may give in to an anticonvulsant like Trileptal or something.  I hate being on a medication I ultimately don’t need, but I’ve got to get through this.  Those meds calm down nervous system activity through sodium channels. 

djej2010,  hi, sorry your going thru this horrible wave we all seem to be experiencing lately. I have a neurologist appointment Wednesday but not sure why I'm going. I took Trileptal, gabapentin for years. I now have hyponatremia, an electrolyte imbalance. These drugs as you state calm down the nervous system thru sodium channels. But it depletes sodium so we have to replenish the sodium. I eat more salt than I can stand! Cant drink hydrating drinks due to the sugar or sugar alcohol in them. This is why I don't take  these anymore unless I have to. I had trigeminal neuralgia so had to take them.

I don't know why I would go but have an appointment made over 6 months ago. Is there anything else that you know of that they can do for us?

Hope you find the answers your looking for at your appointment. 

Ns

[[dj...]]

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

djej2010,  hi, sorry your going thru this horrible wave we all seem to be experiencing lately. I have a neurologist appointment Wednesday but not sure why I'm going. I took Trileptal, gabapentin for years. I now have hyponatremia, an electrolyte imbalance. These drugs as you state calm down the nervous system thru sodium channels. But it depletes sodium so we have to replenish the sodium. I eat more salt than I can stand! Cant drink hydrating drinks due to the sugar or sugar alcohol in them. This is why I don't take  these anymore unless I have to. I had trigeminal neuralgia so had to take them.

I don't know why I would go but have an appointment made over 6 months ago. Is there anything else that you know of that they can do for us?

Hope you find the answers your looking for at your appointment. 

Ns

I can’t take high doses of these meds anyway.  Most those people getting the hyponatremia are taking 600-1200mg.  I took Trileptal before at 150mg and it was fairly tolerable.  
 

Will not do Gabapentin.  I took that and the withdrawal was so bad it landed me back on benzos.  
 

I’m not entirely sure what else is in their arsenal for this type of stuff except anticonvulsants. 

[[Wi...]]

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

I made a neurologist appointment for Monday.  I can’t deal with all this head tingling, prickling, pressure, brain fog.  It exacerbates my DPDR too.  I feel confused and like I’m hallucinating.  
 

I may give in to an anticonvulsant like Trileptal or something.  I hate being on a medication I ultimately don’t need, but I’ve got to get through this.  Those meds calm down nervous system activity through sodium channels. 

I went through horrible anticonvulsant withdrawal so I am reluctant :/ But it’s been just terrible. I mean I could somehow handle it up to this point but the head now is just too much. I cannot even go for a walk with my daughter. What the hell. I honestly fear this will just keep getting worse and it will never calm down and reverse. 

[[Wi...]]

Today pain in my upper body and head buzzing and pressure causing severe vibrations in my head and down my back. It’s not liveable… I feel like somebody plugged me in. The electricity is pulsing and so forceful… Am I going to survive this? People go through that? Omg! 

[[Wi...]]

Today I woke up buzzing from my head down my legs and my back and arms are burning. I must say that officially my akathisia got worse to a level I have never had it. The brain sensation and all the symptoms I have been having recently are all a part of it. I mean it’s been building up since it got retriggered but for some reason for me everything goes this way that there is no acute per se but slow worsening. I hope it doesn’t mean it won’t get better… Apparently it’s a thing and it can happen that it gets way worse but people say they still heal. One lady said she deteriorated for 2,5 years before starting to heal, two other people even longer but they are fine now. Omg it’s terrible. But I guess there is hope. Just how to make it through this and ride it out. I am so scared!!!

It’s awful that this has happened. Maybe hormonal issues caught up with me and did that (stopped breastfeeding and you know that does change brain chemistry), maybe it was the probiotic or cranberry, or it might just be how it goes for me. 

[[Re...]]

@[Wi...] I love your post, thank you for it. I needed to read this now. I feel a bit like going backwards in the past 2 weeks, today especially again.

It is easy to swirl into hopelessness and your post helped me. 

Thank you. 

[[Wi...]]

 

Yesterday I had a better day but still in terms of objective assessment it was a bad day. I had symptoms but they changed and cycled quickly, there was pain in my arms and legs, then sensations in my face like an internal itch or something and around 2pm it started getting better. Since then there weren’t many strong symptoms in my head except for occipital pain (but no electrical storm) and it’s what made it bearable. I could stand, sit with my baby. In the evening there was only a little buzzing and I could relax. But as I went to bed I started feeling the altered state creeping back in. Today back to horrible head issues again, electric pressure from my head down into my shoulders and my brain trying to electrocute me. Buzzing too but that alone wouldn’t be as concerning even though it’s annoying. I am going crazy with this severity and the fact that I have no freaking clue what is going on. Really could a few meds 18 months, 15 months and 8 months ago have messed me up this bad… Psych med free for 3 years already. Why am I not recovering. I fear I have been permanently damaged. I see people on fibro, cfs, fnd boards with similar issues and they don’t recover. I am pretty sure a good percentage of those people have iatrogenic issues. They do not get better but maybe because they still trust pharma and take a slew of meds. So maybe that’s why. 

 

[[dj...]]

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

Yesterday I had a better day but still in terms of objective assessment it was a bad day. I had symptoms but they changed and cycled quickly, there was pain in my arms and legs, then sensations in my face like an internal itch or something and around 2pm it started getting better. Since then there weren’t many strong symptoms in my head except for occipital pain (but no electrical storm) and it’s what made it bearable. I could stand, sit with my baby. In the evening there was only a little buzzing and I could relax. But as I went to bed I started feeling the altered state creeping back in. Today back to horrible head issues again, electric pressure from my head down into my shoulders and my brain trying to electrocute me. Buzzing too but that alone wouldn’t be as concerning even though it’s annoying. I am going crazy with this severity and the fact that I have no freaking clue what is going on. Really could a few meds 18 months, 15 months and 8 months ago have messed me up this bad… Psych med free for 3 years already. Why am I not recovering. I fear I have been permanently damaged. I see people on fibro, cfs, fnd boards with similar issues and they don’t recover. I am pretty sure a good percentage of those people have iatrogenic issues. They do not get better but maybe because they still trust pharma and take a slew of meds. So maybe that’s why. 

I wouldn’t compare yourself to fibro/CFS folks if you know you are definitely dealing with a benzo injury.  Lots of similar symptoms I know, but those are complicated illnesses with no known cause.  Some may have iatrogenic issues, but both of those conditions can purportedly be caused by a wide range of things, including issues with immune system.  

[[Wi...]]

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

I wouldn’t compare yourself to fibro/CFS folks if you know you are definitely dealing with a benzo injury.  Lots of similar symptoms I know, but those are complicated illnesses with no known cause.  Some may have iatrogenic issues, but both of those conditions can purportedly be caused by a wide range of things, including issues with immune system.  

I think I am dealing with med injury in general, I wasn’t on benzos specifically but had wd from other meds and then adverse reactions to unrelated meds.

 

Today it’s been pretty bad. First, mostly pain all over my head and now tuning fork in my head, back, down my legs, buzzing like a mf. The pressure from my head is terrible. I am scared, it feels like I am developing full blown aka or something. My brain is trying to electrocute me all the time today. 
 

Edit 2 hrs later: yeah I feel horrible. Full blown electrocution. All over prickling, flashes. 

Edited February 5 by [Wi...]

[[Wi...]]

Now I think it may be that reducing breastfeeding to one per day at the beginning of December affected me so much but not sure. I just don’t understand how I would get so much worse with no trigger, it doesn’t make sense. 

I am non-functional and terrified all day long. I feel awful. I have trouble sleeping because of the buzzing, the buzzing is stronger than ever and everywhere, I feel like a plucked guitar strong. Yesterday I had aka all day with tuning fork feelings all over, electricity. It was coming from my head and again staying upright spurred things on but lying down was bad too. I also had aka feelings in my freaking face!!! Today it’s more the pit in my stomach type as I woke up, I will update later how things are going.

I don’t have real windows, I mean symptoms switch and can get a bit milder for a few hours but it’s not enough to get relief or hope.

This is a gigantic and unrelenting wave of new symptoms and old ones 10x stronger and everything is more persistent. 

My worst fear is that something is just permanently broken and that’s why I am getting worse and I will deteriorate until I can no longer do it, omg!

 

I really need support. 

[[Wi...]]

Today it’s all about electricity again. It’s a terrible sensation. I just feel like I have a layer of electricity inside me between my skin and my bones and it just feels like it’s short circuiting. It’s a sinister sensation. I can’t see it going away. I have had it for a year now with some breaks but now it’s the worst it’s been. I don’t see this specific symptom in others, because I am not talking about buzzing/vibrations, which I also have some days. I tried doing something and no way, when I get active I have the electric pulsing from my neck down my back (aka) and additionally, this layer of electricity gets kind of activated and I get weird electric surges to different body parts. Like my brain is about to fry me. And it then feels like acid in veins weird burning under my skin. I had it almost this bad a year ago exactly, then it improved and later I had it this bad in some waves. But now it’s very often and it’s really strong and sickening. Honestly it feels like my nerve cells just misfire and have no idea how to communicate. And when it’s there I cannot move because it feels like I will have some electric burning explosions in my chest, head, basically where the electricity is the strongest. I feel like I am hooked to an electric unit. It’s ridiculous. 

 

If anyone ever has this please let me know because I am losing my mind. This wave is relentless. Just switching symptoms but either one is very strong. 

Edited February 6 by [Wi...]

[[Wi...]]

Nice. Akathisia like hell. Electrocution, burning, pressure, tension. Nice, nice, nice. Survival mode on. 

[[Wi...]]

I talked to Angie P yesterday and told her all my new symptoms. She did reassure me that she had most of them (electric spine, vibrations, head pressure and brain symptoms, nerve pain, surges, overstimulation when up and something else I am forgetting) and she has also had a lot of people with the rest of my symptoms she didn’t have. She said people do get better from this crap no matter how severe at one point. She also told me she believes that my motherhood hormones (pregnancy and breastfeeding) kind of covered up the baseline and she is not surprised that stopping or reducing breastfeeding would throw me off the track this bad. She also said that it’s not uncommon for this crap to keep getting worse for a longer while. 
Oh I hope she is right.  

[[Ka...]]

That’s good you spoke with her. Having someone validate & be understanding to your situation is hugely beneficial. It is encouraging & despite the absolute crap, wave & all the things coming at you hope you can be reassured by what she said. 

[[Wi...]]

 

I am so sick. I cannot be upright. Some days I can handle it for a bit but most days it’s just not possible. It just makes my symptoms ramp up badly. 

It’s all because of the electric malfunctioning in my body. The space between the back of my head down my neck into my upper back and shoulders is terrible. Electrocution originates in there. 

Most often it’s a hot spot with pressure and electric pulsing trying to electrocute me, sometimes it is more like this internal burning pressure and it spreads down my spine. Sometimes there are a lot of vibrations all over too. Other times it’s the source of the bone crushing pain I have been having that spreads down my arms, it comes with the acid in veins flu like feelings. All these sensations make me feel like I am somehow pressurized and going to explode. It’s connected with akathisia for sure, it’s definitely some spectrum of it, just not the full blown kind, at least not yet... A lot of people who have or had aka have similar issues. 

The faulty electricity also started giving me weird nerve pains in my face too. I can feel my tongue, teeth, eyelids… it’s ridiculous. It’s something like pressure, weird awareness, some pain even. 

I honestly feel like it’s going to get worse without a stop because clearly whatever affected me wasn’t just a one time insult to my system but something just broke down and it’s still getting so much worse… I had never imagined such pain and suffering was possible before it started happening to me. If my symptoms started levelling out it would be easier to have some hope but at this point it’s very difficult to be hopeful at all, even when I am told it’s not a predictor that things won’t get better. 

 

Edited February 10 by [Wi...]

[[Wi...]]

 

I don’t know why I am even writing here. I guess I just need an external outlet. Whatever happened to me is so bad that I can’t see myself recovering anymore. I have had paresthesias for years since Cipro and they flare from time to time but they alone wouldn’t break me.

But the rest I have developed since my setbacks is just not liveable. Electricity going crazy inside my brain and body, odd brain sensations, severe toxic gnawing pain that always develops out of the blue and disappears the same way after tormenting me for hours, electric pressure pulsing from the back of my head down into my chest, stomach, that makes me bedridden because being up overstimulates me and causes it to get worse (that part is for sure akathisia, a few people I talked to have had it), so when I am up it will either cause pressure down my core and subsequently vibrations or it will lead to jump out of my skin feelings (or what I call skin explosions), not to mention the turmoil it causes in my brain - it’s all a weird overwhelming tension and overstimulation.

My nervous system has gone haywire and I don’t see it repairing itself. It would have started by now if it was reparable… 

I just feel like a shell of myself. I have lost almost everything in my life. My dream job. My social life, my dreams. My inner peace. Laughter. I cannot even go for a walk anymore. And I used to walk at least 2 hours per day most days. I cry when I think that I won’t be able to show my daughter all the wonders of the world. It’s so unfair. 

I don’t feel like waiting because there might be nothing positive to wait for. Many people get better even after years but nobody will guarantee it will be me and seeing how much worse I have become in the last 1,5 years, it’s hard to see anything positive. 

Sorry for a negative post but this is how I feel. It’s just too much. 

 

[[Si...]]

What about going on progesterone?  I think stopping breast feeding causes prog to crash? Progesterone acts a little like a benzo.  I'm sorry, I'm a mass of electric waves and burning too,  no peace, lost everything

[[Wi...]]

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

What about going on progesterone?  I think stopping breast feeding causes prog to crash? Progesterone acts a little like a benzo.  I'm sorry, I'm a mass of electric waves and burning too,  no peace, lost everything

A hormonal med sent me into a setback 1,5 years ago so there is no way I am touching any hormones :/ 

From what I have read breastfeeding has little impact on progesterone, more on dopamine. Plus oxytocin is no longer released. 
 

Sorry you are suffering too, it’s awful!

[[Wi...]]

 

Nice. It’s getting out of hand. My brain is electrocuting me… I got up again today with this electric pressure burning from the back of my head down my body. It usually gives me internal burning in my brain and down my spinal cord. And today it progressed to actual electric shock/ jolt going down my spine. It felt like somebody electrocuted me. Now my entire midsection is just squeezing. I feel like I need to force myself to breathe. And I can feel more shocks are to come. I have no idea how to survive this. This is more severe than what I see here. 

 

Edited February 16 by [Wi...]

[[Bo...]]

Sending so much love and hugs to you friend. Hoping today is a better day for you even then just a few percent better can make all the difference and just give us some renewed hope. 💜🙏💜

[[Wi...]]

 

I am still bad but some days are more bearable than others. What used to be a very bad day for me a few months ago is now desired because the horrible days have reached a new level. I can relax some moments when I am lying down but the moment I am up trying to do something my head goes haywire and my body follows. And then I have to recover in a supine position. What is this?!
 

And oh, big news. Unfortunately, my neuropathy from Cipro seems to be back. It’s not severe but definitely widespread. It’s mostly my feet and sometimes hands but it can also spread almost all over and I can feel it in many places, it’s mild but any intensity is distressing. It can get rather bad in my toes, though. It was mostly gone for the length of my pregnancy and months after it with an occasional 1-2 day flare of some symptoms. It started getting a bit worse in December and with the beginning of my horrible wave at the end of December I started having the bad waves of paresthesias again. The last 10 days I have had it to some extent every day as was the case before I got pregnant. Great. I think that the fact that I am lying down 80-95% of the day might be partly responsible because walking helped a lot, especially my feet. It also distracted me a lot z but that out of the window for now. 

 

Add to all that the weird electric crap in my CNS I have been getting during the last year and head and body pressure with crippling sensations and I am really losing hope. If I ever recover it seems I am looking at years of healing. It’s been almost 4 years since Cipro, 1,5 years since the “setback” (which f’d up my CNS way more than before). Oh please, brain, me just heal from the “setback” because that’s the part that crippled me… I didn’t really have these weird CNS issues before the “setback”. What on earth do they put in these meds. 

 

Edited February 20 by [Wi...]

[[Wi...]]

I have been wondering about this stupid current. On some days it’s there all the time like this steady electric pressure down my spine going into my arms and legs. It buzzes in my head and deep inside my torso. It almost burns at the back of my head where it originates. But I am wondering if it is some kind of dystonic or dyskinetic shit. When the pressure is bad keep getting these urges to hmm jolt, shudder, twitch my arm/leg. I don’t have to rock or pace but this current makes me want to do something. It feels as if it were stronger it would move me by itself but so far it keeps making me have to make these movements. So it’s not involuntary per se but I feel like I have to do these movements to relieve the pressure. Or maybe it’s what akathisia is for me. 

[[ns...]]

On 03/02/2024 at 03:29, [[W...] said:

Today pain in my upper body and head buzzing and pressure causing severe vibrations in my head and down my back. It’s not liveable… I feel like somebody plugged me in. The electricity is pulsing and so forceful… Am I going to survive this? People go through that? Omg! 

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