Worse before it gets better!

Do others experience cycling of intense symptoms in their current wave?? Like for example: every other day is bad with a capital B and then every other day is manageable but you still know you are in a wave. And during those bad days, you go from deep despair and depression (1-6 hours) to intense burning pain (1-6 hours) and then agitation and doom and gloom for 6-8 hours. And all of these are extremely intense.

 

It seems to cycle for me as well. The pattern has been the same up until the nasty, intense wave I had a week ago. To that point, it would be 3-4 days of moderate discomfort then peak and then maybe a day of relief. Now it feels like that pattern has condensed more to where it's almost a daily occurrence. I'll feel relatively calm with less anxiety and physical tension in my midsection prior to bed, but then tends to rise overnight with frequent trips to the bathroom and a rough time getting back to sleep because of the rumination that starts.

 

Do others experience cycling of intense symptoms in their current wave?? Like for example: every other day is bad with a capital B and then every other day is manageable but you still know you are in a wave. And during those bad days, you go from deep despair and depression (1-6 hours) to intense burning pain (1-6 hours) and then agitation and doom and gloom for 6-8 hours. And all of these are extremely intense.

 

Hi Wildling,

Yes, I have exactly this. However, I exactly this.  I have the burning skin and scalp almost 24/7 though.  I had it all through my taper and now that detoxed.  (for a total of 8 months).

Pure hell on earth. The despair, depression and anxiety come from my perception that I am no healing.  It seems that everyone else gets some sort of relief, but I have very little.

I took .25mg xanax and tried tapering for 4; I was unable to come down hardly at all during my taper due to the intense burning skin, so I went to detox to get it out of my system.

I am 9 weeks post detox and am in the fight of my life. I have had very few windows.  Do you have the burning skin as well?  How to you cope? I'm so afraid that I won't heal. I have been on my knees asking for mercy and healing.. and yet I suffer.  I don't understand why I am not healing or getting any better.  Lord help us.

Jordan-Jack, this takes time! For inner strength I pray and meditate. I also have a good support network. I am a member of Alcoholics Anonymous, so we all support each other. I really do believe the hardest thing throughout this whole ordeal is trying to keep a positive mindset. I remind myself that my brain is currently under repair and not functioning correctly. This will be the case for maybe another year or so. I know the time frame seems abysmal, but these are the facts. Real improvements are made over time. I had a very rough time with all sorts of physical and mental symptoms, but all of them have faded over time. They are still there, but they're less intense than before. Hang in there man! Time is on our side! We just have to hold out!

I know this is thread is 3 months old with no updates. Just wanted to check with you guys about the symptoms. I am almost at the end of 18th month and recently experiencing intense waves these days after having very good normal days. The waves(anxiety, feet burning, intrusive thoughts, fatigue) feel like I am going down and have not experienced this intense during my entire journey. Just want to hear from folks  on this who are around my time lines or who are completely recovered about this pattern and their thoughts on this.

I'm sorry to hear that you're struggling. Since I made this post I am still struggling. I am hoping that this is the worse before it gets better because it has been really bad and has gotten even worse. I am now 23 months out. I have done some reading of success stories and some people do get worse before they get better. So hopefully that's the case for you when you get through this you might have a better baseline. Hugs!

 

LiveLife

Bump…

23 months now. It’s been awful for me too. Rapid cycling. Old symptoms are back. Basically I’m have more intense waves that are brief but contain old symptoms from acute days. The old symptoms are less intense and shorter than acute days but they’re taking turns visiting. My usual symptoms are more intense again as well but occurring in cycles of more intense. Hopefully I didn’t confuse anybody…..

For example I’m having an intense waves again on a scale of 0-10, they’ve been 7-8 at least once a day. But doesn’t last very long. During that wave old symptoms take turns about every 15 minutes ( a couple pop in mildly then a different set take their place until the wave ends). I’ll get a semi-window for about an hour or so then a newer but less intense wave will begin- on the scale of a 6 lasting about an hour or two. Semi- window. Another wave…etc. then by bedtime I began my night wave which are more intense now. I manage to go to sleep then wake in more intense morning dread that last about an hour and a half followed by my first wave.

Before turning 23 months my morning dread was very mild. Night waves very mild. Day waves very mild. I was making good progress- taking walks, sitting up, self care, cooking, riding in the car, etc I can still do those things except the car ride but they’re a real struggle since turning 23 months. Seeing older posts and others in my timeframe lets me know that this is common around 2 years milestone. Wow it sucks!!! I’ve also read that it might be the last big wave before healing. OMG I pray that’s true for me! I don’t want to win the lottery and become rich, I don’t want to live in a mansion with expensive cars out front, I don’t want exotic trips, fancy meals, etc All I pray for is to be healed completely healed living a normal life symptom free everyday. I have a new granddaughter being born in a couple of weeks ( this month) I really am a bit saddened that I won’t be able to get in a car to go hold her in my arms. Unfortunately I’ll have to wait at least until she’s a month old to hold her - or longer depending on when her mother brings her to see me. This robs us of so much.

LadyDen,

 

Good explanation of all your symptoms helps me to understand much more clearly what you're going through. And you're right this whole process certainly does rob us of so much. Just looking at this Old Post makes me realize how long I've been severely suffering. It's actually been really bad since December and has gotten even worse in the last few months. So, I'm sure hoping to turn the corner soon myself. I sure hope both of us are close to our final healing. It would be so wonderful. I'm with you, the only thing I really want is just to completely heal and have my life back. I can't wait. I think it might be closer for both of us than we think. And hearing the way you're cycling and what's happening I think you are very very close. Congratulations on the upcoming birth of your new granddaughter. I hope you start feeling so much better and you're able to go and hold her. Sending you warm love and healing hugs!

 

LiveLife

Amen to not wanting any more than to be healed.  I just want to be who I was 2 years ago and that would be enough for me for life.  I would turn down any wealth or power in the world to be myself again. 

 

 

 

 

LadyDen and LiveLife,

 

The description of your symptoms sounds very similar to my symptoms.

 

I am now at just over 20 months off valium and I am also having some rapid cycling of symptoms.  Some older symptoms have also returned (muscle pain in my legs and buttocks) which had been gone for many months. 

 

Main symptom continues to be muscle pain in lower back and abdominal muscles (virtually always on the right hand side).  Can be very severe but usually does not last a whole day.  Can get several days of that in a row and then get several of days of some minor relief.  Also experiencing many days of muscle tingling and "itchiness".  Feels different to the brutal pain and is more bearable.  Hoping that this is the final stage.

 

Wishing us all a rapid recovery.

 

I'm getting hit hard again too. Unbelievable, yesterday I had a few glimpses of feeling normal, started thinking to myself I'm getting close. Then things started to ramp up a bit, this morning I'm walking the streets at 6am head spinning. Not done that since acute. Don't know how much more I can take to be honest.

 

This truly is a nightmare

Sorry you are all still suffering. I’ve not been great last few days, seem be going backwards. The street party from hell yesterday really set me back. Thumping music like disco, neighbour brought half her family, loads kids running all over our drive and garden .I holed up in the house, husband wouldn’t ask them to turn it down. Sounds silly but really stressed me out. Just bought book recommended called DARE, help with anxiety, starting think be like this forever. Least the Jubilee stuff over here👍

Agree, any type of new experience ramps the anxiety up dramatically.

Havingamare,

 

I'm so sorry you're struggling again. I was looking to you for encouragement because you're a couple months ahead of me. I've been suffering right along here for a number of months until only gotten worse. Sure hope it's the final wave for me and you too. Hang in there. Hugs!

 

LiveLife

Leann,

Sorry to hear that it didn't go well with the Jubilee. Hopefully now that it's over things will be able to settle down for you and you can pull out of this wave and go back to your nice window. That would be great. Hugs!

 

LiveLife

Iwillbeatthis,

 

Yes you're right. Hugs!

 

LiveLife

Havingamare,

 

I'm so sorry you're struggling again. I was looking to you for encouragement because you're a couple months ahead of me. I've been suffering right along here for a number of months until only gotten worse. Sure hope it's the final wave for me and YouTube. Hang in there. Hugs!

 

LiveLife

 

Cheers LL  Wow that was rough, sweating and throwing up, head spinning. Not been like that since my setback. BUT I'm feeling pretty good now. Best window yet

Havingamare,

 

I'm so sorry that you suffered like that. But at least there's a positive outcome. Wonderful!

 

Good for you! Very encouraging. Wish I could follow in your footsteps. Hugs!

 

LiveLife

Havingamare,

 

I'm so sorry that you suffered like that. But at least there's a positive outcome. Wonderful!

 

Good for you! Very encouraging. Wish I could follow in your footsteps. Hugs!

 

LiveLife

 

You will, your day is coming. It's just soo dam hard. I was crying again yesterday. But things turn when you don't expect them too xx

Havingamare,

 

Awe. I know what you mean I've been crying pretty much every day lately. The symptoms have been cycling very intensely and then sometimes I get hit with them all at once. It's just been worse then ever, and it's been bad pretty much the whole time. For the last few months and the last month especially, it has been the absolute worst. Thank you so much for the words of encouragement. I know this isn't linear and it can turn at anytime. I'm sure hoping for that. Hugs!

 

LiveLife

Bump…..

Anyone feeling better? Came out of their ugly wave? I’m having acute like waves with new symptoms. Two days before turning 28 months. Wow it sucks! I’m praying that this is my big healing happening. This far out seems so unreal.

 

Anybody else? Especially in my timeframe?

I seemed to have turned another corner last week. So not getting completely smashed, and doing ok with some supplements that seem to help. Still some way to go tho unfortunately @ 31.5 months. and soon to be 24 months from setback.

 

Hopefully things will even out for you soon LadyDen

Mare I’m so happy to hear that! I know from your posts that you’ve suffered a lot too. Hopefully you’ll remain in this good place or even better. 

Thank you for your support and reply. This cheered me up. I needed to hear from someone past my timeframe that’s doing better. Gives me hope that this is just part of my course. Hopefully it will be short lived. I was just thinking this morning that the previous level of my morning dread and waves I once thought was bad….nope now I know what bad is. I’ll be happy to go back to a week and half ago when I didn’t have the severe sound sensitivity, inner vibrating, pulsating especially at bedtime, anxious feeling, muscle tightness, benzo belly with diarrhea ( it was mild and very short lived a week ago), nausea and no appetite. 28 months out….unreal these waves and symptoms. I was just feeling better like I was done with the really bad days. So I’m looking forward to feeling better soon. Hopefully my baseline will be much better when this lifts. Again, thank you!

Warm big hugs 🤗

Did your terrible waves start around 28 months?

Mare I’m so happy to hear that! I know from your posts that you’ve suffered a lot too. Hopefully you’ll remain in this good place or even better. 

Thank you for your support and reply. This cheered me up. I needed to hear from someone past my timeframe that’s doing better. Gives me hope that this is just part of my course. Hopefully it will be short lived. I was just thinking this morning that the previous level of my morning dread and waves I once thought was bad….nope now I know what bad is. I’ll be happy to go back to a week and half ago when I didn’t have the severe sound sensitivity, inner vibrating, pulsating especially at bedtime, anxious feeling, muscle tightness, benzo belly with diarrhea ( it was mild and very short lived a week ago), nausea and no appetite. 28 months out….unreal these waves and symptoms. I was just feeling better like I was done with the really bad days. So I’m looking forward to feeling better soon. Hopefully my baseline will be much better when this lifts. Again, thank you!

Warm big hugs 🤗

Did your terrible waves start around 28 months?

 

Yeah I think it was around 28 months. I lose track to be honest, but it's definitely been a rough few months. Unbelievable isn't it, the gift that keeps on giving. Healing hurts and all that 😭.

 

Let's just hope it ends for everyone soon

Mare thank you for your reply. Around 28 months….got it. I figured this must be what this is. Yes it’s unbelievable! I appreciate the encouragement. I’m praying this clears out soon. I haven’t done anything different, having increased any exercises and not taking anything at all. So it must be just part of this process.

Hugs! 🤗