Medication Induced Setback Support

[[Wi...]]

I totally get it. I was almost healed before my setback. And now worse than before. Hopefulli it will soon start lifting but hard to see that as I am still getting worse. Maybe healing goes like this, awful.

[[bi...]]

It scares me because most people I've spoken to in setbacks (primarily AB) were mostly healed prior to it. I was not, still very symptomatic (obviously had improvements over the 3.5 years, but still pretty nonfunctional). I feel like that means it will take me even longer to heal since I wasn't starting with a more stable baseline :/

 

I think its a good sign you were almost healed prior to the setback. Your body knows how to heal and will get back there. They say we can get worse before we get better and it's signs of healing. It's a good sign you also had a window recently. You got this!

[[Wi...]]

Yeah but back then I would say my aka compared to now was 20% the intensity I get now, healing was more linear. This time downward spiral still, so it's not going the same way.

 

I think it might take you some time, ut you have a chance to heal anyway. Not sure if you read traumatized80/brighterdays's posts and success story, she had it horribly and was polydrugged, also with AB, and managed to fully heal.

[[bi...]]

Yea well most people say that their setbacks were worse than their WD (including me) and they all go on to heal. Everyone I've spoken to says we all heal from this, so that is what keeps me going and we gotta hold onto that. I just keep telling myself that 1,2,3,4 years from now I will not feel as bad as I do now.

[[Wi...]]

Me too! But sometimes I feel I won't stand another day of this. But we have to keep the big picture in mind.

[[bi...]]

When will these extreme symptoms end? I'm really struggling.

[[...]]

Hey bicycle.  The extreme symptoms will end, they did for me and my setback from steroids 14 months ago was BEYOND anything I could have ever imagined.  It was extreme, far worse than acute.  I couldn't even eat ANY food with it setting me off.  I cant stress the word EXTREME enough.

 

This weekend it is 14 months and while I am still only about 50% healed I can function enough.  I can sleep.  The pacing is gone.  The extreme mental symptoms are gone.  I want to live life to the fullest.

 

I still have a lot of symptoms.  I still cant eat carbs and sugar like bread, pasta nor can I eat anything with alcohol in it including stuff like vanilla extract.  I also cant use mouthwash that has any ingredient with “ol” at the end of it.  Propylene glycol is the worst as it has given me minor 14-60 days setbacks each time I ingest it.  It is in everything!

 

I have come to the conclusion that I may be ‘allergic’ to medications for the rest of my life including steroids, antibiotics, rubbing alcohol  and anything else that has an affect on gaba.  Other people on here can tolerate these thing fine but not me unfortunately.

 

You WILL come through this.  Just stay away from anything and everything that could aggravate your symptoms. 

[[Wi...]]

I feel awful too, I am still getting worse every day it seems. Had a partial window yesterday, could socialise, today back to inner tension and skin explosions (like some part of my body suddenly feels hot/electric and it makes me want to jump out of my skin). It feels like a toothache building up somewhere in my body. Weird burning achy throb. I have only had this for the last 2 weeks or so, maybe not even that.

 

Why is my akathisia still getting worse...? Zero improvement, zero. I hope it's the pregnancy... Or maybe has anyone experienced worsening for a while after their med setback?

[[bi...]]

My symptoms are definitely getting worse post setback. They were getting better the past few months, however, the past two weeks have been EXTREME. I'm not able to watch tv or go outside so I'm just trying to cope until it passes. I'm hoping this is a healing wave and will end soon. I still don't understand how an AB setback could be 10x worse than my original WD.

 

It's good you had a partial window yesterday and I hope they become more frequent for you!

[[Wi...]]

This is really weird, isn't it? Mine has been extreme too. My symptoms are all over the place during the day. I can sleep but wake up like 3 times every night. As soon as I get up - the tension and weird body feeling (this inner electric burning or itching), pressure builds up, then get vibrations, or skin explosions or whatever else my body has planned for me and it's bad until the late evening. I want to be over pregnancy and postpartum, I just want to be back to my body and maybe then the real healing will start, or at least my CNS will stop getting worse.

[[Wi...]]

I wish I were one of those people who have a setback hit them and they just improve after that, even if slowly. It’s been 4 months since the antibiotic and I am still drowning. The last month has been horrific. New symptoms or worsening of symptoms that had been adding up since the setback. I have really had enough. Can’t go out anymore. Mostly stay in bed or on my couch.

 

My setback timeline:

August 22 - clomid caused a setback, felt it 2 days after stopping, return of akathisia - inner vibrations in chest and stomach, tension and restless biceps, weak and faint feelings in arms and legs, a little later also restless thighs, windows usually as long as waves. I am able to work and function rather;

September 22 - I find out I am pregnant, first trimester symptoms kick in, akathisia is similar but I have 1-2 days when it’s really bad and different, think it was triggered by working at a wedding and it was all too loud and all or it was Rennies I had to take for very bad pregnancy heartburn and nausea, in general waves during the day, not as bad, windows in late afternoons and evenings, a couple of full window days, I am able to work and function rather normally;

October 22 - a few very bad days beginning after a wedding I attended (again, probably the noise and stimulation), starting to get a bit worse after that but still not terrible, I take d-mannose for a couple of days for a suspected UTI and things get worse as I develop very bad tension in upper back, shoulders, neck, burning there. Again arms start feeling faint and I get days when it’s really bad. I also take a few PPIs for my stomach (has been on them for years with no issues), I get more anxiety, develop a feeling of bounding heart rate in my head and neck (HR normal for pregnancy), some days I struggle but in general I am able to work and function somehow normally, so go for walks, exercise.

November 22 - in week 1 I take 1 dose of fosfomycin as the UTI is bad, something is wrong right away but the next day is the most horrible one I have experienced at the time. General tension is a lot stronger, never been that bad, inner aka is stronger, I have trouble working. Symptoms change in intensity but I only get 1 window day per week and evenings and nights have become worse but still windowish most days. After about 2-3 weeks off the antibiotic something is very wrong. I get more vibrations, restless muscles start appearing in new places - lower back, butt, lower legs. New symptoms come up - jolts down my back, headaches. Internal itch/tickle often replaces the previously undefined restless feeling. The last days of November are horrific, my lower back and buttocks bother me a lot, horrible feeling. I really struggle at work, don’t know how I will make it. Waves have become very very bad. But most days before the last November wave I can still function somehow, walks, exercise, shopping. But just feel crappy.

December 22 - end of Nov wave continues, it’s awful. I get weird electricity all over my body, jolts down my back. It passes after a few days. Most days I have symptoms all day long, just evenings are better. It’s stuck electric itch and tickle here and there but usually not as bad. I have a cold 10-20 of Dec but aka at the time is not as bad. Still have bad waves, when I start buzzing. I can still force myself to function, socialise on better days, go for frequent walks.

January 23 - in and out of waves but waves are still awful, I get the internal itch/tickle more often somehow, it’s down to my feet and hands sometimes but I can still function, some days worse than better. I still have 1 great window day per week. Suddenly I get a window (60-100% ok) 19-24 of Jan, then 1 day window, 1 day wave, 2 days window, 2 days wave. I feel it’s getting better. Waves are awful but windows are so good. I can exercise, go for walks, socialise. Not good but things seem to be improving. I start iron pills as I am mildly anemic.

February 23 - my undoing, honestly. The first few days same pattern as in Jan, and on the 4th something feels different. I get this internal itch I had before but it’s more electric and it feels like it’s in my bones, all over, I get electric jolts. The more I move, the more I can feel all this. It morphs into electric burning and I start getting gnawing burning toothache like pain in my nerves (feels like bones or muscles, it’s very deep). It’s one of the worst sensations ever. Every nerve feels raw and exposed. I get random pains such as paresthesia, stings, electric shocks. The gnawing burning deep pain completely immobilises me when it happens because any movement triggers that pain. Any. The other day holding my phone set my arm on fire. I start thinking I have developed CFS or fibromyalgia. I develop weird explosions/burning shocks that usually hit my chest or back out of the blue. Like adrenaline shooting but it just shoots like this, doesn’t make my HR go up or anything. When inner vibrations hit bad they are from my head down to my butt and I get some electric jolts. I start getting the buzzing hot head more often and I start getting overstimulated easily. I have to lie down most of the time as even sitting makes me overstimulated. I feel like there is this low level buzz at the base of my neck most of the time and I am tense all they long but when it increases it turns into intense vibrations buzzing and feeling a very strong heartbeat (still HR normal) that my body seems to be buzzing to. It affects my upper body down to my butt. The centre is either back of head/neck/shoulders or lower back. It all feels like an earthquake, I am shaky and quivery, feels like my bones are rattling. When it reaches its peak I get hot and just count hours for it to stop. It happens in the same timeframe most days - 9/10am to 3/4pm. The intensity changes. I start having trouble doing anything at all. I can manage a walk once a week and it is not without symptoms. Symptoms change day to day, every few hours. Some days there is no restless muscles, some days my lower back is spared, some days there is no pain or burning but in general it’s been hell. Evenings are better in general but I would no longer call most of them a window. I don’t get full windows anymore. Everything is overstimulating, I don’t want to drive. I can barely take care of myself. I cannot handle any stressors. I stop going out at all. I manage to go out once to see some friends when I suddenly have a nice window. That’s it. My family doesn’t believe I can be that bad, they tell me to pull myself together because there will be a baby soon. Only my husband is supportive.

Nights always look the same, I fall asleep no problem, wake up feeling very weird after 1-2 hours, fall asleep again, wake up at about 5am and usually fall asleep again.

 

So yeah, you can see by that how much I deteriorated in the last month. I am beyond terrified. Is it the antibiotic setback running its course, pregnancy or the iron I added? No idea. I no longer take the iron by the way, too scared. At this point I only take Gaviscon if heartburn gets really bad but that’s not frequent. I don’t understand what is going on, I have no strength left it seems. I cannot distract anymore because the pain gets pretty bad when I am upright. So it’s just me, my bed/couch, TV and my phone. I hope it’s just a phase of intense healing changes going on.

[[Fi...]]

Just an update to my anesthesia induced setback.

 

It's been 6.5 months and there has been progress. I can now walk, read, watch TV,  work a little and I taught myself to knit.

 

My remaining symptoms are:

Anhedonia: This is my most crushing symptom. I worry I will never feel happiness again. I can feel anger and sadness but not joy. 

Insomnia: Still have issues with sleep but it has improved. I get about 3 hours of sleep plus micro sleep. I do have frequent nights of no sleep and occasionally a night of 6 hours.

Mirtazapine/Remeron: I still have deep regret over taking this medication again when I was so sick after the surgery. Except at the beginning, it has not given me any sleep support. I am tapering now and am down 23%.  I worry I will never get off but I also know that is my withdrawal brain at work.

 

If the anhedonia lifted, I know I could face anything.

 

Final Healing

 

I wanted to give another update to the post I made above.

 

5 days after I posted, my anhedonia lifted. The relief I felt was incredible as it was the worst symtom I had.

 

What remains now are:

 

Insomnia: I was getting some improved sleep but it has gotten rocky again. I'm using some supplements and will continue to do so.

 

Mirtazapine/Remeron: I have continued tapering and it has been hard at times. I'm down about 30% and still feel the sedating side effects of the medication. My most recent cut was hard but I am determined to get off. Not having the anhedonia has made it a little easier but I still struggle with sadness and fear.

 

I think I'm still healing from the setback and feeling the effects of the Mirt taper. However, I am more functional despite the pain of withdrawal. It took time for my brain to heal from the setback but it has. My setback was particularly severe due to the reaction to the anesthesia and other medications they used with it. Not everyone's setback will take the time mine has.

 

Hang in there, your brain is healing.

 

Final Healing

 

[[Ni...]]

Bicycle, I am sorry you are struggling so much. My aka was worse in the beginning. It is somewhat better but there are times when it is more challenging.

 

Final healing, I am so sorry to hear you are having such a difficult time.

 

I too am in setback. The first in July from hormones and the second in September from an AB. The worst part is sleep. 2 hours a night at most. In desperation I tried mirtazapine again, didn’t work this time. Was then given Gabapentin. Am now stuck and trying to taper to get off. HORRIBLE. I struggle to watch a movie, read a book or listen to music. I spent a lot of time on the couch with hunting headphones on with a blanket over my head to minimize stimulation as much as possible. My ability to handle even the least amount of stress is non existent. I have a fear of being alone. The mental symptoms are much worse than during my tapers. My brain keeps telling me I am not going to make it. And the fear and anxiety, oh gosh!

 

I had no idea that a setback was even a possibility. I went to urgent care, er twice, my pdoc and even a nuero consult and everyone kept telling me it was in my head.

 

I hate that any of us have to be going through this but it is consoling to see other people experiencing the same things. I truly thought I was broken.

[/quote

 

Hi,

What hormones set you back and for how long? Was it HRT or BHRT?

[[Ni...]]

Hi everyone,

Im in my 3rd setback due to DHEA cream and then herbal tea 3 months later. This feels awful and sleep isn’t good at all. Maybe 1-2 hours and some nights  a bit more. High anxiety and panic is also bad. Can’t believe I’m back in this misery 6+ years later. I’m unable to work so out on disability from my part time job at the school. My family is so tired of this especially my husband of 8.5 years. He’s ready to bail on our marriage and I can’t blame him. Also menopause hadn’t been kind to me so dealing with low hormones as well.

[[Wi...]]

Niners, very sorry! I am that sensitive too. My setback began with a hormonal drug and it is worse than original issues, probably because I also had to take an antibiotic in my pregnancy a few months ago.

 

I hope we can all see healing soon.

 

 

[[Ni...]]

Niners, very sorry! I am that sensitive too. My setback began with a hormonal drug and it is worse than original issues, probably because I also had to take an antibiotic in my pregnancy a few months ago.

 

I hope we can all see healing soon.

 

I’m sorry Willhealsoon. You’re pregnant too? God have mercy on us. How long are you in your setback?

 

[[Wi...]]

Yeah It’s been 7 months and 4 months since the antibiotic. And now I am feeling that I might be getting a UTI again. Geez!

[[Ni...]]

Yeah It’s been 7 months and 4 months since the antibiotic. And now I am feeling that I might be getting a UTI again. Geez!

 

Oh no, have you tried apple cider vinegar?

[[Wi...]]

I drank a lot of cranberry juice and water and it’s gone but I am not sure if it even was a UTI because my baby has started to use my bladder as a pillow or a squeeze toy 

[[Mu...]]

Hey guys.

 

I have been "well" for a while now but you all are never far from my thoughts. I receive messages sometimes looking for hope, and I remember being there desperate for reassurance that I would improve and be able to live again.

 

Time has been my biggest healer. As always at this point, I am still careful. I avoid medications like the plague, but am able to tolerate things now I couldn't before. Each year I notice improvement. I still have some sensory issues, that I dont necessarily think I had before this fiasco and my stress tolerance is better, but not what it was. However, I more or less live a "normal" life at this point.

 

I unfortunately cannot say what healing will look like for you, but I know it's possible. Our brains our powerful and new nueropathways will form. Ive bounced back twice from this hell. If I can, you can too. Hang in there.

[[bi...]]

Hi Muddlefoot,

 

Thanks for coming back and I am so glad to hear you are still doing well. Quick question- I thought I had read somewhere that someone said you needed to take an antibiotic again but were able to tolerate it this time. Is that true? I might be getting you mixed up with someone else, but if that is the case that is good to hear that the sensitivities do go away. Thanks! x

[[Wa...]]

Thanks, Muddlefoot.

In my 5th setback now and cannot even believe how this can go on and on.

[[Wi...]]

I get windows that can last for a few days and even on most wave days I remain functional (no longer bedridden as in Feb) but now my setback symptoms have evolved and I again have baaaad paresthesia in my skin (had them since a few months after Cipro but were very bad for about a year and then better and better until they were only mild and happened once in a blue moon, rarely bothered me anymore in the last year or so). Yesterday it flared soooo bad! Haven’t had it to that extent for a long time. So I feel like I rolled in fiber glass or there are fire ants all over, electric stinging and burning from the inside, sunburnt feeling on the outside, crawling, prickling, itching skin but when I scratch it burns (allodynia) just as scratching sunburn would feel. It’s all over, mostly concentrated on arms, back and torso. Plus the gnawing toothache from the inside from time to time but that has decreased over the last few weeks and paresthesia started dominating. I know it will pass, I know it, it used to be even worse than now and it did heal previously, but man that hurts and I can’t believe it’s here again. I know that symptoms changing are a good sign at least in my case because they always went like that and I know it means the brain works on reaching homeostasis again but it’s really frustrating!

 

I am getting close to my due date I can already feel how the medical staff will try to force some drugs on me and they will be like it’s not a big deal and I will have to defend myself. I dread that  I dread labour too and actually needing to be medicated should some issues arise.

[[bi...]]

I'm still in acute struggling so much at 6 months post AB setback. Just needing some support/encouragement that this will end soon.

[[Fi...]]

I'm still in acute struggling so much at 6 months post AB setback. Just needing some support/encouragement that this will end soon.

 

It will get better. I'm 7 months into my setback and almost all my symptoms have lifted. I'm tapering a medication, which makes life hard at times but my brain has definitely healed .

 

You are healing this whole time and it will end.

 

FH