12-24 months and up support group

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Good morning LadyDen. 

[[La...]]

How are you JB? What are your plans today? Feeling better?

[[Ga...]]

Good Saturday Morning, BBs😻😻🎃

 

Have the best weekend you possibly can!!!!

 

Hugs,

 

GG

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How are you JB? What are your plans today? Feeling better?

 

Not well at all LD.  Long story short I’ve been on a nasal steroid for a while.  Started to come off it to see if I needed it anymore.  I could not breathe well without it so started taking it again.  I am suffering the most horrendous sx since my acute phase.  My god it is really bad.  I am back to square one: depression, anxiety, pacing, cant breathe.  I dont know if it was the coming off or going back on or both that is causing this.  I have to stay on it until I can get a nasal turbinate reduction. 

 

Today will not be a great day.  I am looking forward to tomorrow.

[[Ga...]]

Hey, JBen021.  Sorry you are not feeling well!  A quick question?  Have you ever had trouble taking anything that had a steroid in it?  I cannot tolerate anything with a steroid, and I now know that all those steroid injections in my neck made my withdrawal symptoms worse!

 

I sure hope you feel better sooner than later!

 

Hugs,

 

GG

[[La...]]

Yes those steroids are awful even if you’re not in recovery. I agree with Garden. You should stop taking it if you can and use something more natural. Maybe eucalyptus branches in the room you’re in can help. I’ve done that before until I had my sinus surgery. It worked well. Or vicks off and on. Just a tiny bit of liquid vicks in a humidifier for about 10 minutes every 2-3 hours. Warm facial towels are great as well. Place a slightly damp washcloth in the microwave for about 10-15 seconds. Immediately put it on your face under the eyes going across the nose.

I know you’re miserable my friend. Hang in there.

When is your surgery?

After I had mine, I rarely have sinus issues except since I’ve been in benzo recovery. About once a week I get a sinus headache for 24 hours without any infection. I go to bed that night. Sleep and next morning it’s gone.

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Hey GG.  I am staying far away from steriod injections and pills for now.  I’ve seen too many horror stories on here about them.  I’ve also seen a few healed folks tolerate them well.  I didnt tolerate them well before this benzo mess and dont think I will tolerate them any better now.

 

I used to tolerate the nasal steroids but now having some trouble with them.  Sigh. 

[[Ga...]]

Yes, LadyDen and JBen we are all on the same page re the nasty steroids!  I had so many of those steroids injections in my neck, and always wondered why I felt so bad afterwards.  The pain management clinic always told me I was having a steroid flare.....NOT!

 

Hugs,

 

BG

[[La...]]

Good morning everyone and Happy Halloween 🎃👻🤡👹🤖😸🦇🕸

Seems like we’re having Halloween everyday in this chapter of our lives. 😂 we get plenty of jolts, frights, scares etc. Maybe by Xmas we will all feel much better to enjoy some holiday peace and joy with our family and friends.

Today I’m going to watch a movie or two. Nothing scary or too stimulating. YouTube has great movies for free. If any of you want a few suggestions please let me know. But, here’s a few that really touched my heart…

The magic of belle isle

The boat builder

The color of love: Jaycee’s story

Tuesdays with Morrie ( book and movie are great)

Raising Izzie

 

I know watching tv can be hard for some of you but I had no trouble watching these.  For me they were not stimulating at all. Nothing flashing, nothing too violent, nothing too loud, nothing sexual, etc. These can be watched with your whole family. 

Let me know if you watch any of them and how you liked them.

[[De...]]

Someone just posted this in another thread and I think it's worth sharing here:

 

http://www.benzosupport.org/recovery_times.htm?fbclid=IwAR3jB19TBgF3hjCLG5ADrn1Kkqh9aE5lcdx5LpYM5bvIjy_TG8J4JEnMWmM

 

This is a small sampling but if it holds true then 91% of us will be home free by 2 years!!

Of course maybe we are the 9% that just happened to find each other on this thread 

[[La...]]

Wow yeah I’ve seen that graph. I hope so Deanna! Wait let me say it again

I

Hopeeeeeeeeeeeee

So!!!!!

 

That would be a dream. And if not then please at least 90%. 

[[le...]]

Hope you are all doing OK, I couldn't get appt with my GP, the NHS is totally broken here. Got phone appointment end next week. I saw that graph a while ago,  I see they didn't include CT, which for me personally has extended things and I think makes big difference. Does seem lot people with prolonged recovery, notice difference at the  the 3 year mark fingers crossed !!!

 

[[La...]]

Good to hear from you Leann. I think on that page there’s a section showing the difference between CT and tapering. I’m not exactly sure where but if you just look through the tabs you might find it. Hopefully you get an appointment soon. Just keep trying.

I’m in a wave right now. Trying to just rest. These milestones are not fun.

[[Up...]]

Okay guys the cortisol or adrenal surges I m still having while not as severe they are still debilitating and I need some advice.  Please don’t say I need more time guys is there anything you know of that helps.  What am I doing wrong.

[[La...]]

Another buddy told me to eat a little peanut butter with an apple before bed each night. If you can tolerate fruit, any of them with high vitamin c will help. Be careful of watermelon it has magnesium. 

Also when you’re surging go meditate to a soothing relaxation video on YouTube. While listening pretend you’re there and do slow deep breathing like you’re drifting to sleep. Then breathe normal a few minutes then back to slow deep ones. If your heart is racing when you have surges, take slow deep breath and hold it for about 4-5 seconds then slowly release through the mouth with pursed lips like blowing up a balloon. The brief breath holding sends a signal to the brain to slow down the rhythm. This helps me. 

Let me know if it helps you. Hugs

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Okay guys the cortisol or adrenal surges I m still having while not as severe they are still debilitating and I need some advice.  Please don’t say I need more time guys is there anything you know of that helps.  What am I doing wrong.

 

Hey upperleft. I am there with you.  I am in a terrible debilitating setback with akathisia, mental issues, severe anxiety, severe depression and a host of other symptoms.  It is really really no fun.  I have really only found two things that help and you probably have already heard of them a million times: distraction and a weighted blanked.  If I can calm myself down enough to stop pacing then I put my legs under a weighted blanket and try to focus on something, anything to distract.  When I feel a little better I will go for a long walk and try to think about everything around me in detail - the trees, the leaves, the smells, the sounds.

 

Back when I was in the middle of my first acute experience I made this list.  Maybe some of these things can help you.

 

I know it is not much but it will help the time pass.  I am having to remind myself of these things again now that I am back in acute.

[[Up...]]

Thank you Den

 

I do all of this but no it does not help or stop.  It is 24-7 and is better in evenings but after almost 27 months it is really hard to function and I have to.  There is no choice.  No support.

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It is so hard upperleft.  I know it is.  27 months is a lifetime when you are suffering like we are.  Have you improved at all in that time?

[[La...]]

JB how many months are you?

I also used weighted blanke. It really helped me feel grounded with such comfort like being held. I hugged my teddy bear for additional soothing.

Hang in there Upper. Maybe try a combo of the things me and Jb suggested?

[[Up...]]

Jben

 

Yes I have…my sx were severe I CT’d after 15 years and I don’t know if that is Why I still have a handful of sx.  Nothing is like acute and I mean nothing.  I have and do drive, cook clean and take care of my child who is ill.  I have taken 4 flights across country and taken care of my sister who passed away.  There is no comparison to what I went through I sleep and have slept from 6-8 hours since 12 months.  I watch tv I go out to eat!  I am trying to maintain my real world because I will not give in to this.  I will fight every damn day!  I have no option of sitting in the house and hoping for better days.  Don’t go gently into this!  I can’t give up but it does not mean it is still not hard. I had seizures in acute I hallucinated for a solid month in acute.  It was not just a few sx I have had most that I have heard of and most are gone but the last handful is constant I don’t get a break from them .  Just know it has gotten easier but still hard!  I was just wanting to know if anyone still has this cortisol adrenaline surge stuff as I still do.  It is not like acute not even close and when it stops I will consider myself healed!

[[le...]]

Good to hear from you Leann. I think on that page there’s a section showing the difference between CT and tapering. I’m not exactly sure where but if you just look through the tabs you might find it. Hopefully you get an appointment soon. Just keep trying.

I’m in a wave right now. Trying to just rest. These milestones are not fun.

 

 

 

 

I found thing on it saying 60% of people who tried CT found it impossible to do probably difficult to compare in that case. Sorry you are in a wave. I found some hydroxyzine I'd got from a privat GP while ago that didn't take at the time. I'll give them a try, just anti histamine so hopefully won't do much damage just try fir few days. I have a weighted blanket I think they are really helpful. Hope your wave soon eases x

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JB how many months are you?

I also used weighted blanke. It really helped me feel grounded with such comfort like being held. I hugged my teddy bear for additional soothing.

Hang in there Upper. Maybe try a combo of the things me and Jb suggested?

[/quote

 

LadyDen.  I am 11 months this week BUT I just, in the last 5 days, had a major setback with corticosteroid nasal spray and I am all the way back into severe acute.  It is really bad for me right now.  I cannot even believe it.  It is like going CT.  Every mental symptom is back.  I am broken and disabled this week.  I am still trying to wrap my head around what happened.  So for now I am at day 5 with steroid withdrawal and month 11 from ativan withdrawal.

[[La...]]

Ok got it, my friend  so the nasal spray is the culprit. I’m assuming you have discontinued it? So this will be temporary. Try to keep that in mind. I know you feel awful right now but soon you will bounce back from it. Soon in WD can be next week or next month but you will. While it’s this rough all you can do is take one day at a time. Pamper yourself as much as possible. This too shall pass. You’ve got 11 months under your belt. That by itself is no small thing. It says you have strength I bet you didn’t know you had. Because you are a warrior! 

I know it’s hard but you will get better. I’m here for you as well as others. You will be alright…we will be alright….it’s alright but it simply hasn’t manifested yet that it is. Each day is a day closer to being alright. Hugs 🤗

[[le...]]

Hope you are all OK, I've decided against trying amitriptyline, as having gone on Surviving Antidepressants seems I'm likely to have another bad reaction to AD'sif I take it. Got phone call appt with GP Friday, situation here is dire, virtually impossible to see anyone face to face anymore.

Had really bad wave yesterday, but thankfully they only last few hours now.

Have any of you had your  booster covid jab, I'm not having it at moment too worried will make things worse.

Get really angry trying force you to have it, but hardly anyone wears masks now, and they allow big gatherings of people , can travel freely , and goverment  seems fine about it.

[[La...]]

Hello Leann glad to hear you got atleast a phone appointment finally. Hopefully it will ease your mind a bit. I think it’s very wise of you not to start an AD. I agree that it’s too big of a chance of making things worse. I’m still having waves and windows too. Sometimes those waves are rough as you said. Sometimes they’re not. But I look at the whole picture that it used to be rough all the time at every wave. Windows were so far and few. It’s not like that now. So I count my blessings plus I’m grateful. So the fact that we’re healing is still evident. Waves and windows tell the story.

I haven’t had vaccinations so I don’t know how to respond to your question. As you recall I was way too sick and bedridden so I couldn’t go get vaccinated. And still can’t. I’m glad that I’m not able to be in the public. I’m grateful that God has kept me safe.

All we can do is do our best to get through each day. Keeping in mind that every day is a day of healing even though we don’t see it. And even though it doesn’t feel like it. Hugs