Medication Induced Setback Support

[Guest [so...]]

Yeah all these weird swellings and pains aren't fun, i have a hard time distinguishing between what is wd and what is something else, i tend to put everything down to wd and hope to god it isn't something else lurking around. It's funny but i've had some random swelling in my gums off and on but felt so sick from all the other sxs it wasn't high on my list! God knows what causes it but i did read that our teeth actually have the capacity to move as there are ligaments that connect the teeth to the bone and these can stretch due to changes in our bite, or grinding or age. So who knows, maybe these evil poisons affect these ligaments like they affect other muscles.

 

I hope i'm improving, i think i might be but i'm scared to even voice it in case i get hit with a monster wave but i can watch tv better now (well some things anyway), i feel more like me despite the sxs, today started with severe muscle pain and fatigue and i could sense the anxiety in the background wanting to join in but i managed to distract myself and it didn't turn into anything more. I actually went out with a friend this afternoon but i think i overdid it because i'm exhausted now. My sleep isn't that brilliant, i wake up every few hours and i have such weird dreams, one night i even dreamt i was in acute again, i felt all the horrific sxs in the dream but when i woke up i was normal, so weird, i think i have probably got some degree of ptsd from all this. Benzo belly back again which i thought i'd seen the last of a few months back. And on it goes, but i do feel different, as though i'm getting there finally.

 

Glad your gum swelling and pain is gone. Just have to keep on keeping on.

[[Mu...]]

Hey guys.

I have been in a wave from hell for the past few days.

Maybe my period and the extra stress from moving and my divorce has brought it on really strong. I don't know. It's not like I've had much relief, but it feels like it's getting worse.

Getting relentlessly slammed by mental and physical symptoms.

Anxiety, panic and fear through the roof. Intrusive thoughts. Complete stress intolerance. Restlessness. Hopelessness. Dizziness, weak, hot, tingling, burning. Hardly able to distract.

 

I am terrified and really feel like this is it for me.

So scared. And so very tired.

 

[Guest [so...]]

MF I'm so sorry that you are suffering so much, you are doing it very tough and the exra stresses of moving, divorce issues etc are taking their toll. These would be major stressors for people who aren't experiencing wd so for us with compromised cns it's not surprising that stress of any sort causes a ramping up of sxs. What are you doing to distract? These sxs are so horrible and mind and spirit depleting that of course you are tired, is there anything that you can do to replenish some of this soul draining horror?

 

I am also in a horror wave, after feeling good a few days ago and finally feeling more like "me" i got slammed yesterday by severe mental sxs, DR and such anger and non stop crying, burning and tingling through my body, inability to coordinate my legs to walk plus a feeling of total body and mind exhaustion. I am starting to wonder if this is due to the AB setback or are these sxs what would have happened anyway at 12 months off, i don't know anymore, like you i am beginning to believe that this is the way i am now, nasty waves every few days, although there is a little voice inside my head that tells me that these thoughts of hopelessness are just the benzo lies again, but it's scary so i can relate to your feelings.

 

All we can do is to keep on holding on and keep on keeping on, i really hope that your sxs ease up soon.

 

SS x

[[wa...]]

Hey guys. I see I’m in good company because I’m also finding myself in a wave. The restlessness today has been so bad. I got hit with it for an hour yesterday then it eased, but today it will not let up at all. I’m on day 25 of my cycle so I’m assuming I’m officially in pms territory.  I normally get my period 28-31 days, but 2 months ago was 42 days and last month was 35. So I don’t even know if I’ll get it soon or if I have to suffer feeling so revved up with this chemical panic & air hunger for 10 more days! Then, since this setback ‘during’ my time is the worst when before it was always the week before. Now I get 2 horrible weeks! I hate hormones!!!

 

MF- I’m so sorry for what you are going through. How are you doing? Moving and a divorce sounds like a whopper even not dealing with all that we are. It’s ok to fall apart a bit, I know I would. Do you think the divorce is ultimately a good thing overall? Or were you blindsided? It’s ok if you do or don’t want to talk about it.

 

SS- I’m sorry you’ve been hit with the mental sx. They are seriously the worst. If we could just have our brain back non of this would be even half as horrific! Did anything set your wave off or is this per the norm for your windows/waves pattern?

 

My fiancé is flying out tonight for a week long work trip. I’m going to go stay at my parents until he returns. I’m stressed about him leaving. Ugh!

 

 

[Guest [so...]]

OMG i have had a horror day, i woke up ok and even managed to go grocery shopping with my husband but just after we got back i was out in the garden and i was slammed with the most brutal sxs, no warning, very bad benzo flu, severe nausea and weakness and fatigue so severe that i couldn't even open my eyes. I couldn't get back into the house as our garden is massive, all i could do was lie down on the grass and all these weird mental feelings were spinning around. After i don't know how long i managed to practically crawl up on to the back verandah and i sat there for a while and finally got into the house. These sxs have now lasted 8 hours and i feel like shit. Holy Mary how long is this going to go on for, 12 months off and still so sick after 6 weeks use, this is the worst i've been since the AB setback that put me in hospital, at least my bp was ok this time.

 

I think that this may have been set off because i have had very little sleep this past week, we've had a mammoth heatwave here and even with the aircon it's impossible to sleep, and my husband gave me a puppy which kept us awake most of the nights too (thankfully i have sorted her out i think), also i have felt a bit better and i think i've pushed myself too hard, i'm realising that setbacks can come from lots of different things, not just meds.

 

Waiting, i'm so sorry that you are experiencing that awful restlessness, exhausting, being post menopause i don't get any hormonal swings but i used to get awful PMS so i can relate, it's good that you are able to go stay with your parents while your fiance is away, definitely better than being on your own day and night all that time.

 

MF i hope you're ok and hanging in there.....

 

i really hope this awful wave lets up some tonight, to say i am soooo sick of living with this is a massive understatement

 

Just have to keep on keeping on

 

SS X

[[wa...]]

Oh no SS, sorry I’m just getting back to you now. That sounds awful. I had a scare like that last summer but it happened while I was driving. I thought I was going to pass out or some weird type of panic attack (I hadn’t had a full blown panic attack in over a year at that point)  I made it home and had to lay in front of a fan in my a/c for hours before I felt better. I think the heat can really do a number on us. That’s the 1 and only time that has happened to me but it was scary & I didn’t know how to even describe it. It felt like a heat stroke or something but all I did that day was go to a greenhouse for some flowers. I’ve spent lots of time in the heat & lots of yard work but that day idk what happened. How are you feeling now? Make sure you are drinking lots of water throughout the day. I’m glad your bp was ok.

 

I had 2 better days. Do you guys find even on your better days or during partial windows that you still have anhedonia? No positive feelings at all even when the other stuff backs off. Do the positive emotions and connections really come back?

 

Now I’m back in a wave, anxious & all the rest, still in pms. Also I’ve had a sore throat for a couple days and think I’m on the verge of some sort of cold or sinus infection. My brother & nephew are sick & I spent Sunday with them and of course nephew was coughing all over me. Poor thing just turned 2 so not his fault. I’ve been eating really healthy and lots of vitamin c foods trying to ward it off. I hope it doesn’t get full blown.

 

Hows everyone doing?

[Guest [so...]]

I'm ok today, apart from having a horrible depression descend on me, it took 3 days for that awful wave to subside, i still can't believe how sudden it all was, one minute i was fine and then within 3 minutes the fatigue was so great i couldn't open my eyes, it was as though the muscles required to open my eyes couldn't work and then my legs followed.I really thought i was dying. It must have been terrifying to have that panic attack come out of nowhere when you were driving. It's really scary because it makes it impossible to plan anything, daren't make any arrangements to go anywhere or do anything by myself in case i get suddenly slammed. Before the AB setback i was having waves every 2-3 weeks, and i even managed to sell my house and buy another and relocate 400 kms, but now i'm getting waves every 3-4 days, that AB re-injured my cns so bad.

 

Yes, i have awful anhedonia even without a wave, can't find hardly any positivity in anything, no motivation to do anything, takes me all morning to finally get in the shower, on the odd occasion that it goes away it comes back really quickly. I'm now heading into my 2nd year and although some of the worst physical sxs have gone (inner vibration, burning pain, severe anxiety, racing thoughts) i still feel very much "sick".

 

Waiting, i sure hope you don't catch your brother and nephew's cold, i live in dread of getting some sort of infection or virus, keeping my fingers crossed that you don't get it, none of us need another setback.

 

Just keep on keeping on

SS x

[[Ka...]]

Hi Guys, sorry l have’nt been on here in a while but, l have been waiting and still am really to see if l am homeward bound so to speak,since the middle of November l got into a pattern of 4 day windows then 4 day waves l am currently in a window which l thought might go after 4 days but guess what? l have been in this window since January the third l do have symptoms but they are very very mild l am doing more then l have done in a long time and no longer waiting for the day to end, l know it is early days yet and still wonder every night before bed if l will get slammed the next day. I will keep you informed, l know l am a little ahead of all of you (5 1/2 months ) but if l am on my way to the finishing line l am hoping it gives you all some hope that you will soon be there too also l think we need to find out how long after healing are we susceptible to these set backs l don’t ever as you must feel this way too want to be in this situation again. Love and healing to my true benzo warriors.... Kat xx

[Guest [so...]]

Oh Kat i really do hope that you are turning a corner here, from your sig you have been through such a lot, i know what you mean about wondering if/when you're going to get slammed again when you finally get a window, keeping my fingers, toes, legs and anything else crossed you are on the home stretch....

 

I am starting to think that i will have to be careful with any meds etc for the rest of my life, and it really scares me, i'm in a horrible fatigue/depression wave for the past 4 days now, can barely get off the couch, managed to do an hour's gardening this morning before the heat really hit but my heart rate was way up and the hot sweats were so debilitating so the thought of ever needing another medication at some point terrifies me beyond belief. I relocated last September and my new gp wants me to have a gene test for as many classes of meds as possible, i took the swab and posted it off but it got lost somewhere along the way and i have to do another one, the thought of my dna lost in the ozzie bush is a strange visual, but i guess if i get some info on my body's reaction/metabolism of meds that may be helpful. At least the dr is taking my situation seriously and i find her caring and empathic, which is more than the other lot were.

 

Thanks for your hope giving post, i am fast losing hope at just over a year out so any small encouragement is so helpful, i feel as though i am just crawling along in this awful journey.

 

 

[Guest [Ka...]]

So glad to see this thread! I do think it's needed. Even a section for people with setbacks.

 

I was two years out from my last benzo and symptom free when I had my last setback. The setback lasted with windows and waves 6 months, it slowly got better, I felt like I went through all the stages of WD again but faster this time. Anyhow this March will be two years since my setback. Basically all I have are some pain. Nerve pain mainly and the ringing in the ears which is a bummer because after taper it went away for the two years.

 

My setback was caused as far as I can tell with my blood pressure pill manufacturer went out of business so I was switched and then this all started. I could not go back to the original pill so they tried me on others and that made everything worse. Since stopping all pills it has gotten so much better.

 

But I don't know why or how and what might be so I stick around and I keep trying to research.

 

Kay

 

 

[[wa...]]

Hi Guys, sorry l have’nt been on here in a while but, l have been waiting and still am really to see if l am homeward bound so to speak,since the middle of November l got into a pattern of 4 day windows then 4 day waves l am currently in a window which l thought might go after 4 days but guess what? l have been in this window since January the third l do have symptoms but they are very very mild l am doing more then l have done in a long time and no longer waiting for the day to end, l know it is early days yet and still wonder every night before bed if l will get slammed the next day. I will keep you informed, l know l am a little ahead of all of you (5 1/2 months ) but if l am on my way to the finishing line l am hoping it gives you all some hope that you will soon be there too also l think we need to find out how long after healing are we susceptible to these set backs l don’t ever as you must feel this way too want to be in this situation again. Love and healing to my true benzo warriors.... Kat xx

 

This is so good to hear kat! Thank you for the hope!

[[wa...]]

So glad to see this thread! I do think it's needed. Even a section for people with setbacks.

 

I was two years out from my last benzo and symptom free when I had my last setback. The setback lasted with windows and waves 6 months, it slowly got better, I felt like I went through all the stages of WD again but faster this time. Anyhow this March will be two years since my setback. Basically all I have are some pain. Nerve pain mainly and the ringing in the ears which is a bummer because after taper it went away for the two years.

 

My setback was caused as far as I can tell with my blood pressure pill manufacturer went out of business so I was switched and then this all started. I could not go back to the original pill so they tried me on others and that made everything worse. Since stopping all pills it has gotten so much better.

 

But I don't know why or how and what might be so I stick around and I keep trying to research.

 

Kay

 

Thank you Kay! I’m so glad to hear this. I read a couple of your posts and I got akathisia & chemical anxiety from antidepressants (& a ton of other symptoms) and was slowly getting over it until the antibiotic I got it all over again (among other things). Can you tell me more of how your recovery played out? What things went first and what was the last to go for you? What kind of things do we have to avoid in the future if we are susceptible to akathisia? I don’t want to go through this again. Is it only caused by medications?  I’m at 4.5 months since I had the antibiotic reaction, but it got worse for the first 2-2.5 months before it started to turn around, did that happen for you as well?

 

I want to have kids in the future but there’s no gaurantee that that could be med free ( c sections, epidural, antibiotics etc) it’s scary to think about needing medication.

 

[[Mu...]]

Hey guys.

 

Sorry I have been MIA.

 

I wish I had some improvement to report but things have not changed much for me. I have been stuck in fight or flight every since my separation and my stress tolerance at this point is non existent. I will be two months out from this setback in a couple days. I just keep going through the motions hoping something will change. I saw my neurologist today. He validated that antibiotics can do this, he's seen it before. He thinks it will get better with time, and wants to wait and see where I am in a couple months before putting me through additional testing. Did test for some vitamin deficiencies tho.

 

I know I've got some messages in my inbox and I apologize for not getting back to you guys. I have been staying away, trying not to trigger myself. I will respond as soon as I feel equipped. I hope everyone is hanging in there.

[Guest [Ka...]]

Hey guys, I have known a few people this has happened to. Some it lasts a month and other 6 months or more. Mine was maybe a total of 8 months with things slowly winding down. windows and waves till it stopped.

 

I can say I had it bad for 7 days and then good for two weeks and this is how it went. Then it skipped the 7 day waves so I thought it was over and it was not. Until it finally lifted. So for me it started in Match 2017 and went to October 2017. Its weird because I never had windows and waves while tapering. I just slowly got better.

 

I personally think setbacks is akathisia.

 

Akathisia is 100 percent drug induced.

 

Doctors think when the drug is out of the system then its fine (not true)

 

Damage and sensitivity to me is the same thing. And I do think over time we will lose the sensitivity. I remember tapering and reacting to foods and supplements .. then over time I could take them or eat the foods. I think this will happen with other medications over time, I just don't know how long. I have had akathisia 4 times now from different medications. Benzo(klonopin), Anesthetics, anti nausea medication (compazine) in an IV in the ER and Blood pressure pills (losartan and channel calcium blockers). 

 

If you google akathisia you get:

 

In clinical settings, akathisia usually is a side effect of medication. Antipsychotics, serotonin reuptake inhibitors, and buspirone are common triggers, but akathisia also has been associated with some antiemetics, preoperative sedatives, calcium channel blockers, and antivertigo agents.

 

Do we have a setback or did we get akathsia? My friend got it with an antibiotic.

 

Kay

 

[Guest [Ka...]]

Waiting,

 

The way it played out was a faster version of WD or tapering. It felt like I went back to day 1 and I thought all was lost, and windows and waves happened. I never had windows and waves tapering so this was different, sometimes the windows felt liek I was 100 percent cured. Then a wave. I almost think the windows and waves is an akathisia thing.

 

This all started March 2017 and then once a window opened October 2017 it never shut and the thing lifted. This is my 4th time with something like this. This was my longest time also but I had two serious medications back to back and the channel calcium blocker for 45 days.

 

with akathisia 6 months or less is considered acute akathisia and then anything longer is considered chronic akathisia. but if your still taking the offending medication it could go on and on till you taper off. Going off a medication too fast or being to high up on a medication can also cause akathisia.

 

I read about people's setbacks and I read about other people's akathisia and it seems to be the same symptoms.

 

If you google akathisia info blog you will see a wordpress akathisia info blog. I think you or anyone with  a setback should read the comments there. you can see if any of what the commenters say matches what this feels like. It was a wake up call for me.

 

Anyhow the good news is setbacks seem to get better and then stop ... so far that I know of.

 

So I think over time the sensitivity gets better, but am still int he process of planning on how to protect myself from yet another bout of this.

 

Kay

 

 

[[Mu...]]

Kay,

I have just come to terms with the fact that so much of what I am experiencing is akathisia. It is relentless. I am so afraid I will not heal this time. I am so tired but my body refuses to let me rest. If I try it only makes things worse.

[[Mu...]]

This is the second or third time I've had it. It seems a lot more intense this time.

[Guest [Ka...]]

I had it 4 times and each time was different, so I don't know if that was because of what medication caused it? One of the times, which was 8 months not 6, I thought the same thing, even family said I have to live a life in spite of this. Weird I know, I had to function on some like of level, but what was odd is that when it lifted it was not expected. It just does. And I guess when it runs out of steam. God I hated it still do. What I got out of it was PTSD and I got some therapy which does help a lot I think, my therapist does not know what akathisia is but she helped with the PTSD part because I was traumatized by all of this.

 

There is not much info here on it.

 

Kay

[[wa...]]

How’s everyone doing? I’m in a wave from $&#%. Anyone seeing improvements?

 

I just wanted to add that I talked to a guy the other day who had a severe ssri withdrawal that lasted about 3-4 years. Then he was fully recovered for 1-2 years, felt great. Then he took an antibiotic and got hit hard like all of us here. He said it was really bad but the recovery time was a lot shorter than his first  wd and he gradually recovered over a year. He said both times he didn’t take anything. That was 3-4 years ago now and he’s 100% fully recovered, happy, healthy, no sensitivities, can drink alcohol, everything back to completely normal. He said his mood is so good now he feels like he’s just living on a natural high and life is great.

[[Ho...]]

I just wanted to add that I talked to a guy the other day who had a severe ssri withdrawal that lasted about 3-4 years. Then he was fully recovered for 1-2 years, felt great. Then he took an antibiotic and got hit hard like all of us here. He said it was really bad but the recovery time was a lot shorter than his first  wd and he gradually recovered over a year. He said both times he didn’t take anything. That was 3-4 years ago now and he’s 100% fully recovered, happy, healthy, no sensitivities, can drink alcohol, everything back to completely normal. He said his mood is so good now he feels like he’s just living on a natural high and life is great.

 

Waiting...Is the person that you are referring to here, a BB member?

[[wa...]]

I just wanted to add that I talked to a guy the other day who had a severe ssri withdrawal that lasted about 3-4 years. Then he was fully recovered for 1-2 years, felt great. Then he took an antibiotic and got hit hard like all of us here. He said it was really bad but the recovery time was a lot shorter than his first  wd and he gradually recovered over a year. He said both times he didn’t take anything. That was 3-4 years ago now and he’s 100% fully recovered, happy, healthy, no sensitivities, can drink alcohol, everything back to completely normal. He said his mood is so good now he feels like he’s just living on a natural high and life is great.

 

Waiting...Is the person that you are referring to here, a BB member?

 

No, he’s not unfortunately. He does have a profile over on the surviving antidepressants site though.

[Guest [De...]]

Neurotoxic effects of antibiotics.

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3175508/

[[Ka...]]

Is anyone feeling any better yet?

 

 

 

[[wa...]]

Is anyone feeling any better yet?

 

Not I, been drowning in an acute wave for over 2 weeks. I just don’t understand.  Almost 6 months since the AB reaction.

 

Hope others are feeling relief.

[[Mu...]]

How is everyone holding up?