Getting worse from setbacks

[[Wi...]]

 

Hi! I just need to get this off my chest. It’s not a positive post, sorry.

 

I am so depressed and scared. My issues are not from benzos but I am here because I might have GABA issues from Cipro as it does a similar thing to benzos and I react badly magnesium and so on. I share symptoms of many of you. I was polydrugged in general. 

 

I was originally harmed by Cipro in April 2020. Had many symptoms, mostly all sorts of painful paresthesias, that were of course labeled as a result of anxiety and I was put on psych meds, I tried a few, had a horrible reaction to Cymbalta when I would get weird surges of a hot flame travelling my body like I was going to self-combust and that would happen out of the blue for months but that did finally go away. In Feb 2021 I developed mild akathisia-type issues. I am not sure what the reason was, pregabalin wd maybe? Because I cut it in half shortly before. I landed in a psych ward and they tried telling me it was agitated depression ffs. However, I didn’t take the meds they tried to give me (antypsychotics…). Feb 2021 was the last time I touched psych meds other than hydroxyzine (I last took it in early 2023). I had mild aka for a few months  on a daily basis but it had a pattern where it would start at 10am and was gone by 3pm. It was weird but predictable. It started getting better and better quickly and I could easily live with it and by July 2022 it had been all but gone. I would have an odd wave of that every 2 weeks for a few hours or so and that was it. I told my husband that I was finally through it. I was so happy! I still had Cipro issues but they were not progressing or anything. 

 

And then all hell broke loose. We had been trying to conceive for a while and I had some hormonal issues and my doc suggested clomiphene. I took a few pills and ended up with an uncommon side effect of visual disturbances. I was told to stop immediately. That went away, but within a few days first I thought I was coming down with the flu, my muscles got weak, I felt awful. Then aka-type symptoms came in (adrenaline, vibrations, pressure in muscles) and to my horror they were worse than ever. I could tell it was not a wave but worsening. However, it was still not as bad as what was about to come. So that was almost exactly 1,5 years ago. I was told by my doctor that because I didn’t finish the clomiphene course it probably wouldn’t work to make me ovulate. Oh, I hoped it wouldn’t because I was so scared of getting pregnant with these symptoms. But it sure worked and I found I was pregnant in September. I was terrified. Now it seems like having a baby is a blessing because it keeps me alive it seems but sometimes I wish I didn’t have anyone to live for. After the reaction I got paradoxical to my daily dose of PPI and supplements such as d-mannose to prevent UTIs, magnesium, and many other things. It took me months before I was able to drop the PPI and replaced it with Gaviscon I didn’t seem to react to. I was pretty bad and scared in September and October because the initial symptoms I had started getting worse, new ones appeared to, such as weird tension in my neck and upper back. Add to that the lovely pregnancy nausea.
Then in November 2022 I had a very bad UTI and had to take fosfomycin. I chose that antibiotic because I was able to tolerate it a year earlier. However this time, it hit me like a truck. I got way worse. Soon after that I developed electricity in my body. Weird muscle sensations spread all over. All my symptoms came and went but were terrible.

In January 2023 I had quite a few windows, thought I was finally bouncing back. How wrong I was. February and March came with new symptoms again. I became bedridden because I developed burning inside my bones, pain. It was as if I had developed fibromyalgia on top of the aka-like feelings. Severe head overstimulation, most days I spent just lying down. My symptoms kept building up. Then suddenly the wave started lifting in the 2nd half of April. I got so much better. I had few symptoms, few very bad days. I went back to living my life. I had my baby on May 21st. I was induced and it was so bad I begged for meds, I was given nitric oxide, opioids and other things (epidural not available). When fully dialated it turned out my baby was not cooperating and her HR started dropping so had an emergency c-section. During the process I was given at least 10 different drugs. I refused antibiotics. I still felt rather ok neurologically with few issues after having my girl.

But postpartum hit me and I had an infection in my wound. It took 6 weeks to heal because I again decided I was going to try to heal it without antibiotics, just had the wound packed with silver by my doctor. Some neurological issues started creeping back when I was about 5-6 weeks pp so my window lasted about 2,5 months. July was bad and August swept me off my feet. Again, electricity, burning in my CNS, tension, pain, new symptoms. I started to have more restless legs, again I was in a bad wave. All came and went. I was getting worse and worse with time.

Finally in November I started having more windows, waves were not that long, they were still bad but short. I was functional, able to work, able to take care of my baby, socialise, walk a lot with my baby and my dogs. Again saw glimmers of hope. December was even better, I had a lot of ok and acceptable days. Then I had a UTI and didn’t treat it, just took a probiotic and cranberry juice. It went away.

However, at the end of December I entered such a wave that I am bedridden again, just like a year ago but with even more symptoms. Symptoms come and go and fluctuate but the intensity of everything is 10 times worse. Some symptoms are brand new. My baseline went down. I have electrical storms in my brain, like my brain is just misfiring, that comes with head nerve pains too. This is new. There can be severe head pressure and it goes down my neck, the neck feels electrified, like it’s the centre of this sensation. I had this mildly before in waves and now it’s horrific and almost every day. Feels like there is this steady electric current but I wouldn’t call it vibrations. And sometimes it shoots down with this weird electric pressure but most of the time it painfully shoots into my head. It feels like maybe a cattle prod but not painful but more like I can feel that electricity is trying to electrocute me like an electric fence would. I can only lie down when it happens because I get overstimulated when up and doing something, head sensations and the electric pressure get worse. It’s like my brain wants me immobilized. I think it’s akathisia-type symptoms but for some reason it builds up when I am up. I often feel like somebody is tugging at my brain, a very odd sensation, that’s also new. I get pressure in other places, vibrations, buzzing. And when my head flares I get weird surges but it’s not adrenaline, it’s probably aka-related too. It’s like this heavy pressure painless but burning electric shock shooting into my chest or head or wherever. The pressure sometimes is felt not only in my head but also in my throat, chest, stomach, feels like this heavy tight grip. Some days pain hits so bad I cannot move, it’s like crushing bone pain, burning inside, acid in veins. Can barely hold my phone. When I move then it’s like my brain tries to electrocute me as a punishment for daring to do so. Weird twitches, something tugging at me, pulling me. Sometimes symptoms go to my legs and RLS hits. Sometimes weird painful shocks somewhere as if lightning struck me. Paresthesias too but if it was just that I would be fine, have had these since the Cipro and they got better in general. SI all day long sometimes from the symptoms themselves because they are unbearable, sometimes because I just can’t do it anymore, I am so tired. All these come and go, change, fluctuate, but after all this time my baseline is just getting worse and worse. Some evenings are better, some are not. Some nights I sleep well, some not. 

 

This wave has been building up for a month already. My mum has to help me with the baby, some days I can only get up to go to the bathroom or to make myself a sandwich. My mum is 76 and has her own ailments. My husband takes over when he’s back from work and at weekends. 

No idea if this is from the probiotic or it’s a spontaneous exacerbation. I am just terrified because of the new and more severe symptoms. The last meds I touched and not even psych were 8 months ago. Now just the probiotic. I don’t know what to think. 

 

I can see most people, poludrugged or not, bounce back after a few months and me? Not at all. I don’t even know when the clock resets for my setbacks. During my initial reaction to clomiphene that began this mess? When I took the antibiotic? Or when I last had meds - after c-section? I don’t know! It’s all f’d up!

 

I am dealing with some hardcore neurological dysfunction. My CNS seems to be severely destabilised. And I am losing hope. I have been in this fiasco for almost 4 years but it’s the last 1,5 years (since the hormonal med) that I would describe as the worst. Before that whatever I had was not that severe and if severe, it still showed signs of improvement and got better with time. And you know, if I saw any improvement I would have hope but all I have is deterioration with some windows that feel like a sick joke. I know my original issues come from the Cipro and psych meds but it’s the setbacks that sent me into hell. 

 

I got so bitter. I cannot look at how people live their lives, I cannot talk normally to friends when in a wave (which is most of the time) because all I want to tell them is “stfu, because your problems are not real problems, mine are real, I have no fucking life and you are telling me that you have a problem because there is a dent in your new table or whatever”. When someone tells me they have sore muscles from a workout or a killer headache or the flu and say they are dying I just want to punch them. I have no sympathy for health people. I am terrible, I know. I am in hell and nobody seems to understand it. I hate my life, my choices, myself. I just hate it. 
I don’t know how to hold on to hope. I don’t see the way out of this. 

 

Edited January 30 by [Wi...]

[[Ti...]]

so sorry to read this... just want to message and say that i read your post and my heart hurts for you. I will hold onto the hope for you today, please know that you are worth all this pain. Will be thinking and praying for a miracle. 

[[Ne...]]

My heart is broken for you!!  Being a new mom should be pure bliss and you are dealing with torture!  I'm so, so sorry.  Please know that I hear every word you are saying.  I am 70 in my severe 6th setback but more mental torture than the physical pain and weakness and I only have to take care of myself which is hell!!  But I just cannot even imagine having a newborn and having to deal with what you are!!!  Please hang in there and keep fighting through this!  You are strong!!

[[Wi...]]

Thank you for your kind words. Yeah, it’s been hellish.