3-6 months support group

[[ni...]]

gardenlady, I am not completely drug free, as I am still taking estradoil. I've been on HRT for almost as long as I was on clonazepam/ambien. I tried tapering off estradoil two years ago and felt  horrible, so I went back on them. If and when I recover from benzo withdrawal, I'll tackled the HRT. Most likely the, "feeling like I was dying," was from the benzos not going off of HRT, but I'll never know. It took about a year after I went off of HRT and then back on to feel better.

The heavy breathing you have will hopefully go away, but that doesnt make it any better for you now. ToughNights talks about 30 minute windows which if I have, I would never notice with everything going on.

Insomnia is my worst enemy.

 

[[To...]]

Oh trust me, I notice them! I will sometimes be sitting with a cup of tea etc and realize - wow, i feel pretty good! no pain here, nope, no pain there, nope" and so on.

I will sometimes lay down at night and realize....omg I don't hurt (which is the best because then perhaps i can fall asleep!) ...and i sometimes just lay and savor every moment!!

 

So yeah, I notice them! Trust me!

 

 

[[ni...]]

toughnights, you inspire me! I need to try and smell the roses now and then instead of focusing on the bad things. I just want it all to be over or heading that way, but I can't see the forest for the trees.

Right after I jumped, I was so happy and inspired, but that has disappeared.

[[To...]]

Nightengale...

 

It doesn't always come easy to "stop and smell the roses".  I am similar to you in that I really JUST WANT THIS TO BE OVER.  I think that is why when I have had a window (especially if it's a little longer) that when the next wave comes right in I am so disappointed.  I know intellectually that the symptoms are going to return more than likely -- but I'm always disappointed when they do.  That is my hardest time to not let it get me down.  But I have learned that when i realize that things, right this minute, feel really good...maybe it will only last 5 minutes...but sometimes now I will step mid-sentence or mid-stride and suck it all in.  Savor it, as I said.  Just luxuriate in these moments that FEEL SO GOOD.  It lets me remember how it felt, and it reassures me that it's not "gone".  It encourages me that normalcy will return. 

 

It's what keeps me going and keeps my head up.

 

 

[[So...]]

Today I had a small window after a sleepless night (five months for me now with little sleep; insomnia is also my worse enemy). This afternoon I was fatigued and breathing had from exhaustion, I cried on my bed laying down praying, trying to remember happy moments of my life to visualize how it felt to be normal again. Then, I managed to sleep organically for sometime, had a nice dream, woke up refreshed; and it felt great to have had a nap like this after long, long time. I don't know if this will be short lived, but I don't want to lose hope. Just being able able to sleep organically felt amazing. Don't give up!

[[To...]]

Solyluna

 

That was a wonderful little story...

I wish you another wonderful night's sleep tonight ...and more to follow

Stay strong

[[ni...]]

Last night I slept for five straight hours. The first since before I jumped last November 9th. I only got up to go to the bathroom twice in the night.

My husband and I went out for Mexican food and he ordered a margarita. I had water, but had three small sips from his drink. I also started taking a multi vitamin two days before that. I either had a beautiful window just because or it was from the drink sips, but I had a WINDOW!!!

 

[[To...]]

It's great, isn't it? And maybe, also, relaxing, distraction and having fun was another few factors!

[[ni...]]

ToughNights2451 it was amazing. My mood swings way up when I sleep well. Last night it was back to maybe 2 hours. it's so very frustrating!

[[To...]]

night - is there anything you do or use to try to help you sleep? Hot shower, dark room, read for a while, etc. Have you tried magnesium?

[[ni...]]

Toughnights, I read every night, do pressure points, etc. I also drink Sleepy time tea 15 minutes of so before bed, drink maybe an once of milk, also. I usually go right to sleep, but wake up anywhere from an hour or more later. That's when I can't go back to sleep for a few hours even though I go through the pre-bedtime routine several times throughout the night. I take magnesium in the morning, but have never tried it at night. Maybe I should switch the time I take it?

 

[[To...]]

I would try switching the magnesium to just before bed a bit . I use magnesium taurate.  Taurine also helps GABA so I figured it would be a good one.  I also use mag oil spray on my legs (couple of pumps and rub in).  I am like you, can fall asleep but not stay asleep. However lately I've been in a good wave of sleep (fingers crossed!) and have been sleeping most of the night!! UNREAL!

 

I also use Tiger Balm for any aches or pains.  I've read that it also has calming aromatherapy properties and I think that is true for me.  When I smell it, it seems to relax me, not just my muscles in my leg etc. 

 

Hope tonight is a good one for sure!

[[ni...]]

Thanks Toughnights, I shall try the magnesium taurate. I've not heard of mag oil spray, but will get some of that, too. I just have the regular magnesium, not the good one. I can find it online.

I am so happy you are having a good wave of sleep!! I will cross my fingers, also for you!!

 

I'll also check out the Tiger Balm. I tried lavender oil,but it made my poor sleep even worse. It was worth a try.

 

Have a good night's sleep!

 

[[Su...]]

I had a Psychiatrist who said that in his 50 years of practice he has never seen anyone have a problem stopping Ativan as it is out of your system in 6 hours! Went CT on 12/19/2017 off .5 mg Ativan as needed which for me had meant 4 to 6 times a month with some months of none at all. No matter...got hit with hard acute withdrawal starting 1/10/2018.

 

I feel fortunate that most of my physical symptoms actually improved after the first month of acute withdrawal. Gut issues, head fullness, tinnitus, joint pain, flu like symptoms, depersonalization. I was having these issues for the last year. All these symptoms are almost gone at this point. I had been very sick the year on Ativan. Although no one including myself realized it was the Ativan causing all the problems.

 

I am now at 4 months out. My biggest issue is sleep...I miss it so much! The first 9 weeks after CT I got no more than 2 hours sleep per day. I am just now able to achieve 3 to 4 days of broken sleep of 4 to 6 hours then I go back to 2 or 3 days of 2 to 3 hours. I feel almost normal on days following 4 to 6 hours sleep. On days following nights when I get no or very little sleep, the depersonalization and tinnitus come back a little. I am convinced sleep is the key to my healing. But nothing I do makes it happen or come any sooner...so, I guess it just takes time as i have read over and over on this site.

 

 

[[ni...]]

Su2b10 doctor's don't really seem to know about withdrawal symptoms, when by now they should.

Congratulations on having a lot of your symptoms gone! That's a definite plus.

Insomnia is my biggest problem, also. If I could just sleep, the rest of the problems, I would not notice or could ignore. Like you, if I get 4-6 hours of sleep, I feel almost normal, but the next night, I go back to sleeping 2-3 hours. On the plus side you do get 3-4 days of 4-6 hours. I feel that broken sleep is not as good as straight sleep, but it is at least something.

The return of normal sleep does take time, they say.

 

[[ga...]]

Nightengale, I read where you have/had Dupuytren's contracture.  I've just discovered two nodules on my left palm below my fourth/ring finger.  It's so odd that you, fliprain and I developed this while in benzo withdrawal.  I think it must be related as so many people have painful muscle/tendon problems and this is in that same category.

 

Did yours resolve on its own without treatment?  I don't have pain yet or any sign of contracture.  But, I'm wondering if it should be treated in the early stage before it causes more problems. 

 

My symptoms continue to be mostly mental with the exception of insomnia, tinnitus and, now, Dupuytren's Contracture.  The dp/dr, anxiety and depression are beyond description causing agoraphobia and many other problems that have ruined relationships with family and friends. 

 

Hope you are continuing to heal and having a good day!

[[ni...]]

Hi Gardenlady, I am about to leave for the hand specialist as we speak, as I discovered a fast growing nodule on my left hand, which had thus far had not shown any signs of Dupuytren's.

Another specialist did surgery on my right hand, which made it worse. The new specialist, said to never have surgery except to release the contracture. I've not had that yet and may never, according to the new doctor.

I'll write more later.

 

[[ni...]]

Gardenlady, the hand specialist said I now have Dupuytren's in my left hand. He thinks the new nodule will flatten down in a few weeks, if not, he can inject a steroid in it. The ones in my right hand have flattened down without steroids, so it is possible. Thus far I don't have the contracture. There was a point where I thought the right hand cords/nodules had mostly disappeared and then the left hand starts starts up.

I didn't discuss with the hand doctor about my benzo withdrawal. The nurse mentioned that I was  no longer on clonazepam, but didn't comment further when I said I had finished tapering last November. It is strange that three of us on here are having this problem. My right hand was diagnosed while I was on clonazepam and Ambien, not during the taper. I just assumed it was from my Viking roots, even though no one in my family has it but me.

It is an incredibly difficult road we are on, but we must believe that we will get better.

It is difficult when friends and family bail out on us. We need so badly for people to listen and at least try to understand what we are going through. I am sorry this has happened to you. Hopefully those who have left us during out struggle will one day come back. We'll move on with or without them.

Please take care.

[[ga...]]

night, thanks so much for your kind reply.  I'm glad that you don't have the contracture yet.  I noticed today that I not only have the two lumps on the left palm below the fourth finger, I now have a bulging rope-like tendon on the inside of my forearm.  It's the same tendon that is scarred on the palm and it extends to the forearm and elbow and up to the shoulder.  I'm concerned that the scarring will progress....once scars have formed, I don't think they go away.  But, I may be wrong.  Did you doctor say they do?  Also, my little finger has started throbbing although no nodules are showing yet below it.

 

I have an appointment on May 16 with a hand specialist at a fine orthopedic clinic in my city so will let you know what he says.  In the meantime, I understand that most people with Dupuytren's have magnesium deficiencies, so I've started taking a mag supplement.  Also, heliochrystum is an essential oil that is said to help with muscle/tendon inflammation, so I'm going to try to get educated about how to mix it up with a carrier oil, like jojoba, and rub it on my hand and arm to see if it helps. 

 

Do you mind my asking your age?  Apparently, this condition is more common in people over 50 and older people are found to have magnesium deficiencies. 

 

Thanks again for writing.  I hope you have some support at home and are not alone.  I'm coming up on being 4 months off benzos, so am about a month or so behind you. 

 

Sending you wishes for healing and wholeness.

[[ni...]]

Hi Gardenlady,

I've not had any problems with tendons in my arm, just the palm of my hand. I'm glad you have an appointment on the 16th with a specialist, as hopefully you can get some definitive answers to your questions.

The doctor I went to did not mention anything I could do. He thinks the new bump on my left hand will calm down and flatten out in a few weeks.

I have taken magnesium for years, but did stop during my taper. I then started taking magnesium and vitamin D once I finished.

I recently started taking a senior multivitamin and did noticeably feel emotionally better.

The Dupuytren's first appeared when I was in my 50s. I was not taking magnesium then. I'm definitely way past being old enough for this disease.

Something I remember. My mother told me that when I was little and my aunt held my hands, was that they felt different. She described them as being squishy. It was noticeable enough for her to mention it to my mother and then years later, my mother mentioned to me. I have no idea if the squishy hands has anything to do with Dupuytren's, but my guess is it might.

I wish you well in your healing. We have come so far!!

[[ga...]]

Night, It's encouraging that your doctor told you that the lumps might flatten out.  I thought scar tissue never changed and that once there, it was always there.  It's good to hear that perhaps that's not the case with Dupuytren's.

 

 

[[ni...]]

Gardenlady, I think it is more of a thickening rather than scar tissue. I have that between my  thumb and forefinger, where another hand specialist operated. It's different and much worse than the other areas on my palm.

This is all just a guess.

 

 

 

[[Su...]]

My negativity has created a monster within. I'm a little over 3 months out and for the past four or five days it's been a constant nightmare for me. I've been getting these horrific thoughts of wanting to run away from myself and today it was suggested by someone that I somewhat respect that I find a therapist to talk about this stuff. I was in a group setting with other people who have stopped taking pills and other substances and one person mentioned the word suicide. I never thought about anything like that and then all of a sudden that thought entered my mind. I mean it's a faraway thought but it's like I'm a sponge when other people talk. It's kind of like when other people say things it kind of enters into my head. So I need to be careful about who I choose to be around. This whole withdrawal thing is really way more than I thought it was going to be. I really do believe that extra outside help is a good thing. I'm willing to try anything that might help. It certainly can't hurt. Anyone agree? It's almost like I'm scared of my mind. I'm also unable to eat. There's no appetite, so I'm forcing myself and losing weight in such a manner that it's just falling off of me. In approximately 3 months I've lost 18 lb. I really wanted to lose weight before going into detox, had no idea it was going to be this easy. I call it the Detox Diet.

[[Da...]]

My negativity has created a monster within. I'm a little over 3 months out and for the past four or five days it's been a constant nightmare for me. I've been getting these horrific thoughts of wanting to run away from myself and today it was suggested by someone that I somewhat respect that I find a therapist to talk about this stuff. I was in a group setting with other people who have stopped taking pills and other substances and one person mentioned the word suicide. I never thought about anything like that and then all of a sudden that thought entered my mind. I mean it's a faraway thought but it's like I'm a sponge when other people talk. It's kind of like when other people say things it kind of enters into my head. So I need to be careful about who I choose to be around. This whole withdrawal thing is really way more than I thought it was going to be. I really do believe that extra outside help is a good thing. I'm willing to try anything that might help. It certainly can't hurt. Anyone agree? It's almost like I'm scared of my mind. I'm also unable to eat. There's no appetite, so I'm forcing myself and losing weight in such a manner that it's just falling off of me. In approximately 3 months I've lost 18 lb. I really wanted to lose weight before going into detox, had no idea it was going to be this easy. I call it the Detox Diet.

 

Hi Sue,

 

I feel for you. We have almost the exact same symptoms. I too had no idea what I was getting into. I actually thought I wasn't going to miss any work (I've missed 3 months so far on short term disability), but I'm so weak and exhausted, and my job is pretty physical, that there is no way I could do it.

 

I agree with you, the weight loss is pretty scary, made worse by the anxiety, which latches on to any possible negative event and projects the worst case scenario into the future. I honestly thought I would die of starvation just 2 or 3 weeks ago. I had lost 30lbs in 3 months. I was eating around 1000 calories a day (not really eating, I hadn't been able to eat solid food for about a month). Whenever I slept well, which was rarely, my appetite would improve, but about a week ago or my appetite improved for no perceptible reason and the weight loss was arrested. It was a huge relief. At the same time, the anxiety lessened a bit (not sure if one caused the other or what). You really just need time. I went from eating 1000 calories a day to some days being able to eat 2500 calories and gaining weight rapidly.

 

I do suggest you talk to a therapist, especially if you can find one who has experience with benzo withdrawal (this might be pretty hard to find, but if they have dealt with alcohol withdrawal that might be good enough, they both act on the same neurotransmitter). The most important thing is to find one you like and who can make some helpful suggestions on how to best deal with symptoms. I've found the most important thing I can do is to just try and relax, physically and mentally, usually through guided meditation and just concentrating on the breath and relaxing each muscle group individually.

 

You are going to get better, it's just going to take time. It could be quite awhile, or it could be just around the corner. It's hard to predict, since so little research has been done on this. For your sake I hope it is very soon

[[Su...]]

Hypersalivation. Yes, I have that just didn't know there was a word for it. Interesting how coming on on to this site, I've found the words to match my symptoms. Been quite a relief and saved me cab fares to the ER. Thanks for the reply. Does a heart good. Particularly on a day when you think the white coats are coming. Boy am I serious about that 😏