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Waiting12

Waiting12: Needing advice

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Anubhav
On 7/22/2018 at 11:28 PM, Waiting12 said:

Hi buxi. Things have gotten better, yes, no doubt. But I still have a long ways to go. 

What adverse reaction you got...Did you reinstate at a high dose?

Hiw long did your reinstatement last?

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Waiting12
On 7/31/2018 at 4:01 AM, Anubhav said:

What adverse reaction you got...Did you reinstate at a high dose?

Hiw long did your reinstatement last?

 

Mines a story with many components. Check out my first post on this thread. 

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Waiting12

I’ve read multiple benzo recovery stories of people who say they had an intense last wave before feeling healed completely or at least significantly improved. Baylissa also said this happened to her at about 2 years out. Is this phenomena also true for AD & adverse reaction people?

 

I have been in such a nasty ‘retro-wave’ going on about 6 weeks. Things I forgot I even experienced in the beginning are popping in and out. Almost all symptoms I thought were long gone are back, existing ones intensified. Even had a new symptom that every time I ate set me off for hours (eating used to make me feel better). I think I got that under control the last few days with probiotic yogurt... who knows? 

 

Before this i was seeing improvement in every area. I had daily & monthly patterns of feeling better and worse that made it easier to anticipate what to expect. I was thinking about this less & less & not scavenging the forums for hope. Now my day is a total crap shoot & It’s freightening.

 

I guess I just need some encouragement that this is normal at 19-21 months. That all progress isn’t in fact erased and I could be right on the cusp of healing. Did anyone here have an intense wave towards the end? I’m scared this means I have another many years of healing to do. Is this huge wave a good sign or bad sign?

 

 

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Alice1

Hi Waiting ,

Same thing happened to me at 20 months off. Akathisia was way better and I was coping decently , not good but decent. Then all of a sudden my Akathisia came back with 4 or 5 new painful symptoms ..Someone once told me early on that a lot of my symptoms would get better only to be replaced with new ones .. That's exactly how its going for me right now at 24 months off..  What I'm trying to do is pay attention to the obvious things like diet, exercise , sleep and I'm even doing some of that neural retraining stuff , but the one thing I'm really trying to focus on is accepting that this very well might take 5-10 years to resolve . I know its scary to think about enduring such stuff for so long , but I truly think It's one of the most important ( if not the most important ) things we need to do to aid our healing .  You're one of the people I follow on here so I want you to continue to be strong and hold on tight , and be smart about recovery . Neuroplasticity does happen , but it works both ways .  We can change our brain for the better and worst .. Being fearful and negative will create pathways that interfere with recovery .. You and I will be just fine , but it's going to take a lot of work and TIME .... 

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Waiting12

@Alice1

Thank you so much for replying. So after your 20 month wave did you see a lot of improvements in other areas or did it continue to rage on?

 

I’m not going to lie your response hit me hard. I cried at the 5-10 year part. Why have I only been reading 1-4 years? The last of it possibly being very tolerable. I don’t think I am at a place where I can accept a decade of this. Not at this intensity anyways. I still am too sick to work which I hate. If I could be somewhat consistent, with less intense stuff and work it would be a lot better to get through.

 

I can’t imagine the wreckage my life would be if this doesn’t resolve significantly within the next year. I need hope that that is possible.

 

Acceptance comes easily for me when I’m at my normal baseline and watch it rise over the months. It’s this non linear pattern and this huge wave that makes my acceptance go right out the window due to intensity of sx.

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Alice1

Hi Waiting ,

No No No .. I do not mean intense suffering for 5-10 years .. I , like you , have read 1-4 years too , but I'm sure we will have to endure a phase of achiness and fatigue type stuff for some time too .. What I mean is that we have to be realistic about recovery , and not put expectations or timeframes on healing .. It will definitely happen for us , but if we expect it to come next year and it doesn't , where does that lead us ? Down a path of fear, worry, and depression that will only complicate and prolong the actual recovery .. Acceptance while in a window is easy , but the acceptance while in a wave is where the rubber meets the road for us .. That's where the real work is required . The hardest work .. 

 

My improvements happen as follows ;   I'll get a couple of debilitating symptoms for a month , then they will ease off , and 2 or 3 new ones arise for a month , then they will ease off , and the older ones that previously eased off will come back , so on and so forth ..  I have bad days and better days . I do not have any really good days , although I don't expect them yet .. I have windows that last 10-30 minutes 2 or 3 times a day , but I also have waves 2 or 3 times a day that last 10 -30 minutes .. Very up and down back and forth type stuff , which I'm sure is normal ..

 

I'm so sorry my post upset you , but you really did misunderstand what I was saying .. It totally seems like we are both in the windows and waves pattern of stabilization and will heal in due time .. The fact that you were getting better and hit a wave is CLASSIC for healing .. 

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FarmGirlWorks
12 hours ago, Waiting12 said:

I’m not going to lie your response hit me hard. I cried at the 5-10 year part. Why have I only been reading 1-4 years?

I think 1-4 is a more typical timeline... I saw the 5-10 years too and did a big gasp. Yes, everyone's timeline is different and acceptance is the key (and I struggle with that every minute). I suggest reading a Success Story... the timelines vary but the ones I've read are usually less than 5-10. I too cannot imagine going thru this for 5-10 years! However, it may happen and as a member here said, "it will end and before it ends it will get better."

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Waiting12
3 hours ago, Alice1 said:

What I mean is that we have to be realistic about recovery , and not put expectations or timeframes on healing ..

I understand what you mean. I’m totally guilty of doing this. Thanks for the reminder about acceptance. I must’ve been getting better because it had become easier to do. 

 

3 hours ago, Alice1 said:

. The fact that you were getting better and hit a wave is CLASSIC for healing .. 

I guess my recovery had been more gradual with little blips a long the way. I’m glad this is normal.

 

 

1 hour ago, FarmGirlWorks said:

I think 1-4 is a more typical timeline... I saw the 5-10 years too and did a big gasp. Yes, everyone's timeline is different and acceptance is the key (and I struggle with that every minute). I suggest reading a Success Story... the timelines vary but the ones I've read are usually less than 5-10. I too cannot imagine going thru this for 5-10 years! However, it may happen and as a member here said, "it will end and before it ends it will get better."

 

Thanks you FGW. We’ll come out of this eventually. & I hope we’ll be better versions of ourselves because of it.

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Waiting12

Oh boy...while still in my bad wave from late July I have had a very bad reaction to an antibiotic amoxicillin a day and a half ago. I could only take one dose. I took this ab at 2 months out with no issues so thought I’d be okay. Now at 20 months I must be more sensitive.

 

The reaction showed after an hour and was characterized by incredible anxiety, tight throat, dizziness, tiredness, ear ringing, muscle twitching and most freightening of all a change in my mental state with dp, brain fog and weird thoughts. I felt like I was about to go crazy or something. I felt the weirdness start wearing off after about 4 hours from taking it and thought ‘glad that’s over, not taking any more of that’, & went to bed. I woke up yesterday morning feeling very weird with foggy brain etc...My main complaint is that it has triggered a huge comeback of akathisia & some intrusives that go along with it. Like very bad. I did get a break from it all for 5 or so hours but then it came back even worse in the evening. I slept for about 4-5 hours and woke up with it at a very acute level again a couple hours ago. How much longer will it keep getting worse? Also this aka feels a lot more physical than what I had before. But I maybe just can’t remember just how bad it was back then.

 

i had mental and physical akathisia during my recovery and it slowly went away but took a long time. I think it was the first 6-12 months was the worst. It definitely wasn’t 100% gone before I took the ab but it wasn’t one of my main complaints anymore because the intensity was usually a lot lot better.

 

guys, I’m scared. Am I back at square 1? Did I undo my last 2 years of healing? I was in a bad wave but was still getting more clear headed with glimpses of emotions and my personality. I was actually getting there & getting parts of myself and my life back. I can’t start all over. My recovery has been an absolute nightmare and was finally tolerable & becoming stable in may to the end of July this year. Then I hit that big wave setback...now this?

 

Is this just a symptom flare that will soon clear or have I re-injured my cns? Will it take longer to go away than last time? Anyone else have another reaction well into recovery? How long did it hang around? Will I go back to my previous baseline or am I totally screwed? I need hope that I will survive this and that it may not take another year to be livable again. 

 

Any words of encouragement are welcome. Thank you.

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Alice1

Hi Waiting ,

Aeroman reacted to antibiotics after he was recovered and he recovered again . I think it set him back 6 months or something .. I get set back if I get a cold , eat too many carbs , get in an argument , or even after sex . Have a unstable cns does these things . You're never screwed , you are always healing ..

 

If you want you can write to Aeroman and ask him some of these questions . He's a super guy and will respond quickly ..

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Waiting12

Thank you so much Alice.

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Alice1
8 hours ago, Waiting12 said:
8 hours ago, Waiting12 said:

 

guys, I’m scared. Am I back at square 1? Did I undo my last 2 years of healing?

 

You're quite welcome Waiting , and in the meantime while you're healing , work on reframing this part the best you can ..

 

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Waiting12

Thanks Alice. I do hope my previous baseline is still intact underneath this re-sensitization. The akathisia was at an unreal level again this morning from 4am-11am. The worst I’ve ever had it. Then it left and now at a much lower level since. & i was exhausted and was able to take a nap while I had relief. I can tell I’m more sensitive still though. Intrusive thoughts are worse but not as bad or constant as they were in the beginning. No appetite, anxiety, insomnia etc... I am scared of the next days and weeks to come. I hope to god it doesn’t come back to how intense that was yesterday and this morning. There was no distracting from it. Unbelievable.

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Alice1

I suffered something like that last weekend . The Akathisia got to 10/10 for about an hour and there was nothing I could do to settle down . I keep thinking to myself "I've gotta be doing something wrong " , but what that could be is a mystery since I take nothing and do everything suggested by the community to help healing . 2 years out and its only getting worse .. Or is it ?  I think back and say "ok it's totally different from last month , so is it getting worse , or is it just changing and morphing like I was told , and symptoms being different , but still acute makes it seem like it's getting worse ".   No matter how I look at it , its going to do whatever it wants .. Welcome to CT withdrawal ..

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Alice1

My point being " don't fight it , and let it happen "...

Fighting against it only compounds the suffering and adds to the hopelessness ..

I still struggle with this so don't think I'm an expert and can handle WD better than others .. I can't , but I choose to keep working at it , and never give up ..

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Waiting12
14 minutes ago, Alice1 said:

 

My point being " don't fight it , and let it happen "...

Fighting against it only compounds the suffering and adds to the hopelessness

 

I think I need to re-read my Claire weekes book that says this same thing. Thank you so much Alice. Your words always help me. I’m sorry it’s been so intense for you too. Hopefully big shifts will happen after the 2 year mark for you.

 

Do you notice that going for a walk helps when the akathisia is severe? The last 3 times it got bad I went for a 15 walk and each time got a window from it at some point afterwards. I’m not sure if it’s a coincidence or not. Does it also give you racing & intrusive thoughts when it hits hard? Any other coping tips?

 

Thanks again.

 

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Alice1

Yes , Walking helps tremendously , but I walk in the evening , and I only walk gently , not briskly .

 

My symptoms change so much . I get some really wicked stuff . I know I get intrusive , racing thoughts quite frequently , but honestly I don't really notice them too much when I'm getting hit hard with other stuff , which has been happening a lot lately ..

 

As far as coping , well , there isn't any magical stuff I can recommend except the stuff here at SA , but most of the coping tools here at SA are for folks who are tapering wisely .  So we need to do as we've been doing , and that's survive day by day , hour by hour , minute by minute , and stack up that time, like poker chips, until we have a good amount of time stacked up and then look back and say " My akathisia is better than before ", or " I don't feel as hopeless as before " , but be prepared to hit waves too . Non linear . You have to always remember that ... Non linear ..

 

You have survived 100% of your worst days Waiting . This WD thing is about time .  I know you want to get well by next year . We all do , and that very well might happen  , but I really think you should abandon the "get well quick" thing and focus away from desired recovery timeframes . Healing will happen , but you'll absolutely slow it down by watching , and waiting for it to happen .. The number one thing I'm trying to do right now is learning how to live while being sick ..Know that we're not going to die , that we will heal , but we'll need to still live our life despite being sick , while stacking that time up (like poker chips) and looking back every once in a while to see the small improvements turn into one big improvement ..

 

 I have found that learning to live while being sick means living as normal as a life as you can , and gently taking care of your nervous system at the same time . By doing normal things as much as possible without strain on the nerves . so , we don't want to push ourselves to do too much , but we don't want to sit at home watch life go by either .. If you're too ill to do anything , well do nothing , but as soon as you feel capable to do something gentle and healthy , do it .  I think I'm guilty of doing too much myself ..lol 

 

Now please understand that I'm not a professional at this . I , like you , am learning how to do this , and from time to time (probably more) I break down and get frustrated and feel hopeless , so do not beat yourself up for not being able to be a pro at this .. Just keep trying and keep going forward ... 

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Waiting12
On 9/6/2018 at 6:47 PM, Alice1 said:

Yes , Walking helps tremendously , but I walk in the evening , and I only walk gently , not briskly .

 

My symptoms change so much . I get some really wicked stuff . I know I get intrusive , racing thoughts quite frequently , but honestly I don't really notice them too much when I'm getting hit hard with other stuff , which has been happening a lot lately ..

 

As far as coping , well , there isn't any magical stuff I can recommend except the stuff here at SA , but most of the coping tools here at SA are for folks who are tapering wisely .  So we need to do as we've been doing , and that's survive day by day , hour by hour , minute by minute , and stack up that time, like poker chips, until we have a good amount of time stacked up and then look back and say " My akathisia is better than before ", or " I don't feel as hopeless as before " , but be prepared to hit waves too . Non linear . You have to always remember that ... Non linear ..

 

You have survived 100% of your worst days Waiting . This WD thing is about time .  I know you want to get well by next year . We all do , and that very well might happen  , but I really think you should abandon the "get well quick" thing and focus away from desired recovery timeframes . Healing will happen , but you'll absolutely slow it down by watching , and waiting for it to happen .. The number one thing I'm trying to do right now is learning how to live while being sick ..Know that we're not going to die , that we will heal , but we'll need to still live our life despite being sick , while stacking that time up (like poker chips) and looking back every once in a while to see the small improvements turn into one big improvement ..

 

 I have found that learning to live while being sick means living as normal as a life as you can , and gently taking care of your nervous system at the same time . By doing normal things as much as possible without strain on the nerves . so , we don't want to push ourselves to do too much , but we don't want to sit at home watch life go by either .. If you're too ill to do anything , well do nothing , but as soon as you feel capable to do something gentle and healthy , do it .  I think I'm guilty of doing too much myself ..lol 

 

Now please understand that I'm not a professional at this . I , like you , am learning how to do this , and from time to time (probably more) I break down and get frustrated and feel hopeless , so do not beat yourself up for not being able to be a pro at this .. Just keep trying and keep going forward ... 

 

Thanks alice. This really helps. I’m on day 9 of this acute setback from taking the ab. I got a window last night until this morning of my previous baseline which felt so much better. Now today struggling again. I hope my cns calms down soon and goes back to where I was. This has been really hard. 

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Waiting12

 

Has anyone else had a medication induced setback? I took 1 dose of amoxicillin antibiotic 12 days ago. Instant bad reaction. It feels like I’m back to the beginning. It’s devastating being 21 months out to have such a reaction/setback after things were finally tolerable May-July this year. I would really like to hear how long this lasted for someone else (I know everyone’s different) but I need some hope & encouragement that I don’t have to start all over from the beginning. 

 

Thanks,

Waiting

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bubble

Hello Waiting.

 

I'm really sorry you had this experience. I also got sensitive to taking atb and get those frightening mental symptoms you describe. Luckily they go away within a day or two of stopping the atb.

 

But I did have a longer lasting setback from dental anesthesia. I felt cortisol and/or adrenaline surging through me and turning me in an anxiety stricken wrack. I was in a bad way for 2 months but gradually it went away (like everything). So it might take time but it will go away. I surely don't think you are back to square one. Especially since you took just one pill. It's just a painful but minor blip in your recovery.

 

I hope it passes soon. I love Alice's contributions on your thread! Take care!

Bubble

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Waiting12

Thanks bubble! Every story of a setback resolving helps so much to keep that hope that I didn’t re-injure my CNS.

 

16 minutes ago, bubble said:

I was in a bad way for 2 months but gradually it went away (like everything). 

 

After 2 months would you say you were back to where you were before the reaction/setback?

 

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bubble

Definitely! I also found it extremely helpful to know that it happens to other people and that it passes. 

 

I had a story of Pokeshaw who at first didn't even connect worsening of symptoms to dental anaesthetic. The thing is, it wears off and doesn't interfer with recovery mid-term.

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Waiting12

Hi all,

 

I’m having a wisdom tooth extracted on Monday. I talked to the receptionist about my cns sensitivity and problems with medications. She said that they will use carbocaine without epi. She also said ice should be sufficient for pain. I am SO terrified of another bad reaction, especially after 1 dose of amoxicillin 2 weeks ago has me in a bad place still. Has anyone who is extremely sensitive to everything like me been okay with carbocaine for dental work? 

 

Ive never had dental work done before (other than cleanings and braces) so I don’t really know what to expect. I’m a little nervous about the procedure itself but moreso the 3 hour drive to the dental surgeon and possible setback/reaction. Does carbocaine affect the CNS? My anxiety is through the roof at the moment.

 

Thanks,

Waiting

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