Over 60 help and support.

[Guest [NM...]]

Agree about age and experience.......

[[Ac...]]

Hi I’m 69 and beginning month 7 of recovery. It’s a journey for sure...keeping on, keeping on!

AC2C

[[ch...]]

Hi everyone. Just need a bit of extra support today  I am almost 74 now and was put of Valium last year, in March, Never well on it, but told to take it until a proper treatment was sorted, by which time I was dependant. I got no relief at all from it, and it has left me bedbound for many months, lost over 30lbs in weight, can't eat , extremely agoraphobic, too many symptoms to mention. I really think it is poisoning me as I got no therapeutic benefit at all. I have struggled down to 2.5mgs  Valium ,6 months ago, but went into hospital and put back to 4 mgs , my starting dose, since then I have tapered down to 2mgs again, and so ill, but determined to get off Valium which I think so wrong to have been given to me starting at age 72.

I have just looked at the main board  just browsing, and saw a thread re age , and getting off benzo's . Well the last post which gave a link to a mixed group tapering off benzos, via Ashton  did not make me feel any better. I know I am probably the oldest person on here trying to get off this drug, and I am really suffering stuck in bed and feeling so sick. I thought perhaps I might find some support and optimism on here. I could cry because I was so well 18 months ago and now feel the Doctors have ruined my life, which is no life at all.

I now wonder if I should speed up my taper off the 2mgs and give my body a chance, or should I keep trying to go slowly, yet I feel this drug never ever suited me.

I tried to get a  blood test off my Doctor yesterday to make sure I am not suffering, but they refused me because my last one was only 6 months ago, but I am so much worse now and worry because of my age.

Sorry folks I don't want to bring a downer to the boards. Just thought maybe I will get a better perspective from people who are  mature.

 

I am feeling so upset today. Wish I had someone to give me a hug and say it will get better. Some positives if you have some would be so lovely

 

Jen 

[[Mi...]]

Jen, I don't know whether your age makes a difference or not. But I do know that some people are able to taper quickly and heal quickly, while some of us are much slower. I am 70 years old and started tolerance withdrawal from clonazepam at age 65. When I found out (via Ashton) what was wrong with me, I started tapering. I kept having to taper slower because the many symptoms were so bad. It took two and a half years. Then I was still sick, and finally realized that the progesterone I was taking was like a "soft" benzo, and I'm now tapering off progesterone and having the same symptoms as benzo withdrawal. So I have to go slower again. It's hard to accept that some of us have to go slow, when we read about others going faster. I, too, am angry at doctors, and still can't believe they did this to me. I've lost all my friends and family members, except my husband and son, I'm housebound, am suffering terribly. You are not alone. All I can recommend is that you taper at the pace you can tolerate, learn how to live this new way of life, and hope for recovery some day. Benzo Buddies are here for you.

MirandaJane

[[ni...]]

MirandaJane, Thanks for sharing your taper journey. I am taking Estradiol and wish to get off. For the last few years I take .5 mgs every other day. My gynecologist retired and my pcp is not much help.

Beings that is the only medication I am still taking, I assume it is why I am so slow at healing after I finished my taper off of clonazepam 17 months ago. I am so frustrated from getting so little sleep.

How much progesterone are you currently on and how much/often are you tapering off of this med?

When I wore a patch, my OBGYN said to just trim off a slice until there was none left. After my hysterectomy, he switched me to plain estrogen pills.

A few years ago, I tried CTing the estradiol and wow, I could barely get out of bed and felt like I was dying. I reinstated and that's been it.

 

chinchuck, you are not alone nor are you the oldest. I know there are a few of us on here. I take the same stance as my mother, who at 90 said she was not old yet. She is now 99 and back home again after falling and breaking her hip in December with a hip replacement two days later. She lives on the farm where I grew up, alone, though she has in home rehab people coming several days a week and a friend/neighbor and his wife who stop in to check on her.

On another note, my pcp shared with me that a 93 year old patient of his was tapering off of clonazepam. That was last fall when I took my husband in for a med check. I've not been back to get an update on her, but at that time she was almost finished with  her taper. Just because our age numbers keep adding up doesn't mean we can't find success and recover.

Hang in there.

[[Mi...]]

Nightengale, I use an over-the-counter progesterone cream provided by a specialty pharmacy and online, called Progensa 20. Since it is a cream, it is hard to get an exact measurement, which was one of my problems. I finally got some tiny measuring spoons and clocked it at 1/8 teaspoon twice per day. I started tapering in October 2018. I'm now at half that amount, measuring it with smaller spoons. It's been rough. I'm holding at this amount for 30 days because I had a really bad symptom - breathing problems. I'm some better now. When I restart tapering soon, I expect to cut and hold every 20 days. My therapist, a psychologist who also has a pharmacology degree, says I should stay on it. My MD, who is good, says I should taper off. Who knows? I'm relying on Benzo Buddies and my experience to get through this. Last summer I was hospitalized for pancreatitis, which appeared and went away for no apparent reason, and I missed a dose of progesterone while in the hospital for tests. As a result, I had a horrific panic attack (I refused to let them give me benzos) and my blood pressure went to 208. That's when I began to realize the progesterone was a problem, and I did not want to risk missing a dose again. I feel like a damn junkie. I'm determine to get off this stuff, but slowly.

 

Nightengale, I forgot to tell you that I, too, lost 30 pounds in three months when tolerance withdrawal from benzos began, due to nausea and stomach pain. Since I only weighed 130 to start with, this was a big deal. I was ready to start planning my funeral. My doctor did a stomach emptying test and found that my stomach was barely digesting (a condition called gastroparesis) and said I might have to have tubes surgically implanted in my intestines if my weight got too low. I resolved I would not live that way. I found info on the internet about this condition, and started eating six small meals in every 24 hours (which meant some in the middle of the night), of mostly soup, milk, scrambled eggs, peanut butter in the milk, soup, tuna, mashed potatoes, etc. After two years of eating ONLY these things (boring!), my stomach improved and I had gained 15 pounds. Now I can eat anything, my stomach is normal, and I weigh 120. But when I have a bad wave, it goes bad again. Also, my doctor gave me ondansetron (Zofran) for nausea. Aloe vera juice is good for nausea too (but also causes diarrhea). If you have difficulty eating, look up gastroparesis or PM me. When I have bad days (all of them are bad!) I remind myself that I can eat now and I don't have tubes in my intestines. Everything's relative.

 

I wish you both the best.

MirandaJane

[[Sa...]]

Jen,

 

If I read correctly, the group Ashton referred to was only 50 people.  I know Control groups are generally small.  I am happy Professor Ashton has provided the research and information.  I feel like 50 people is a very small group for us to base our future on.  I’m 60 and have to believe we are healing (even in my worst days).

 

SaraSue 

[[Ba...]]

I am bedbound pretty much now.  I guess need to get taken to a primary m.d. so at least they know?  Because don't know how much longer i shower/able to go to kitchen, etc........ or how bad this gets and am alone.

 

Taper sure has not worked for me... don't know what to do.

[[ch...]]

Thank you so much for your replies. I wish I could shake off this fear of everything that keeps me in a constant state of terror. The only time it eases a little is late evening and so I am willing my life away, waiting till night and hope the constant inner terror will ease down. Does anyone else have this?

I don't know if it's the Valium, the tapering  or just me, or a mix. I fear I might be getting dementia. I worry why I can't seem to improve whatever I try. That is when I think I must be too old to mend. I had GAD from a very traumatic event which eventually led to me going to the Doctors and them trying this and that for a week, and then the Valium, so I really don't know if it's the trauma gone untreated and now after 12 months. most of it tapering, I have a double whammy. It is no way to live, Others done seem to be totally frozen with fear. I think I must be going mad. Surely this is not all withdrawal? Valium never worked for me which makes this all the more terrible.

I wonder should I just keep going down off the drug as I get no reprieve or what do I do? How can my brain have a chance with Valium still there, but how do I cope with this terror, and further effects of tapering. I don't know.

[[Mi...]]

Fear, panic and anxiety are the most common effects of tolerance withdrawal and benzo withdrawal. Perhaps the Valium did help you some but you did not realize it. I wish I could tell you how to make this easier, but I just had to wait until the worst of the fear passed, and I still have many fearful episodes. For the first two years of withdrawal, I would not answer my front door and I had the window in the door covered. Try doing whatever comforts you, even slightly, such as hugging a stuffed animal or soft towel, listening to soothing music (for the first two years, I played relaxing music on the computer all night long; I panicked if the computer went off). Talk to someone on the phone, take deep breaths, use a heating pad to soothe aching muscles, watch birds outside the window, look at funny cat videos, etc. Read Benzo Buddie posts. These are small things, but that's all I've got. I wish you the best.

MirandaJane

[[Ma...]]

I am bedbound pretty much now.  I guess need to get taken to a primary m.d. so at least they know?  Because don't know how much longer i shower/able to go to kitchen, etc........ or how bad this gets and am alone.

 

Taper sure has not worked for me... don't know what to do.

 

Barbara, my heart hurts for you.  I wish I could help.  Think about you a lot.  Love Mary 🌺🙏💘🌺🙏

[[ch...]]

Thank you so much for your replies Amanda Jane and Sara Sue.

I too wont answer the front door. I cant talk on the phone much. I am exhausted but dare not nod. It's too toxic, 10 seconds a jerk awake. I think I have to get of the Valium whatever. How did you manage Amanda? I am so sorry you are still struggling all this time on? I don't have any hormone replacement meds to think about , just how to manage. I am so run down. My mouth is full of ulcers and my nose bleeds a lot and is very sore. I am so weary. I am trying to eat when I can, even if it's in the middle of the night as I have lost over 30lbs and was not big to begin with. I am not sure how you find the strength to survive this.

Sara sue  How are you managing after your fast taper. That brave of you. I wish I dared to do that, but think I am too ill to survive, though if I was to go back to the hospital I am told they will just stop my 2mgs Valium anyway. I think it too high in my state of health. Just need to survive and then maybe things will improve. Just I don't have the years left. and am so very worn out by it  all.

Amanda, No apart from the first week of taking Valium after which I had a month or so' break. I really had no benefit, I guess it is because I was on 5 mg tablets that week, though I only took maybe 1 tablet a day for the week, but later I was given 2 mg tablets and they were taken as instructed by the nurse, so a mix of between  3 and 4mgs a day, occasionally 1mg, and on 2 occasions 6mgs which made me dry heave for hours. This never did a thing for me but make me dependant and ill. I was following instructions blindly like a fool. I think I am sensitive to Valium. I feel doped, but never had any  relief from the anxiety at all. Just got worse and worse. Now I am almost too ill to fight. I feel they may as well be giving me arsenic low dose every day. I take it to reduce withdrawals that is all.

 

I am so sorry to be so miserable. I was so lively 18 months ago. Nothing like this at all. I just need a little guidance off. I get no medical help now. The Doc wont visit yet I am frozen here in fear, I was never agoraphobic before valium. I had anxiety but nothing like this. I have terror now.

 

 

I had hoped that when off I might improve, but Amanda you are still struggling I am so sorry. Do you think there may be a genetic reason? I noticed you mention MTHFR . I have just sent for a testing kit myself.

 

 

Sara I am thinking of you as you move forward from you fast taper.

 

 

 

Jen

 

[[Mi...]]

Jen, I'm so sorry you are suffering so much. I do know how you feel. How do I get through this? One day at a time. Sometimes one hour or minute at a time. You may yet live a long life, and the only way to better health is to keep going. You nosebleeds and mouth sores may be caused by low vitamins. I don't advocate high doses (high doses made me feel worse) but be sure you are taking a normal vitamin/mineral supplement and or eating fruits and vegetables. Also, L-Lysine is good for mouth sores (canker sores). It can be hard on your stomach, so take Tums antacid when you take Lysine. Yes, you have anger and fear and despair and don't know who to trust. We all do. Your changes in valium dosages could have affected your reactions, as you have gone through all kinds of interdose withdrawal. Try to keep steady on the Valium and gradually taper, and don't expect to feel better for a long, long time. I never stabilized as I was tapering - I soon started microtapering with a liquid valium. If you can do that, find the microtapering information on Benzo buddies. I got my liquid from a specialty pharmacy, ordered by my doctor. Fortunately, I had a sympathetic doctor (It was other doctors who got me on the benzos.) Do you have someone to talk to? A therapist, friend, relative? It helps to vent all those feelings and have someone run errands for you. I still have toxic naps, but they are not as bad as they used to be. Yes, I have a defective MTHFR gene, but there is nothing that can be done about that. I spent much time lamenting the past, but we can only go forward now. Many people have gotten off benzos, at all ages. It's awful, I know, but you can fight for yourself. There is hope. We are here for you.

MirandaJane

[[Sa...]]

Jen,

 

I didn’t have time to think about being brave after CT, survival mode kicked in!  I chose to go to rehab to help me as I could not function (take care of myself at home).  I would not have made it at home not knowing what was happening.  My docs refused my frantic calls for help.  That was 3+ months ago. 

 

I want to give up often.  I want to live more, more often.  I miss my pre- CT brain and body.

 

SaraSue

[[Mi...]]

SaraSue, I'm surprised you were able to go to rehab for recovery. I looked into rehab facilities when I first learned about benzos and I wanted help, and none of them knew anything about benzos; they were all geared toward withdrawal from opiates and did not know that benzos were different. One place told me they used klonipin to help with withdrawal. That's what I was trying to get off of !!  That's when I knew I was on my own. My doctor and a psychologist I found were sympathetic, but mostly they let me guide my withdrawal and care via Ashton and The Benzo Book. It's scary that professionals offer so little help. I hope you are making some progress.

 

Jen, you might buy The Benzo Book online. It's inexpensive; the author is Jack Hobson and he is a former Benzo Buddie.

 

MirandaJane

[[ch...]]

SaraSue, How are you now at 3 months off? It must have been so traumatic for you. I hope they looked after you well as its a rough journey even with a slow taper. I hope things are healing for you. There is many I time I want to say stop. I want to get off, I hate what this drug has done and is doing in a matter of months, and most of it tapering. It doesn't sound much 2mgs of Valium but I know it is, because I feel every tiny cut when I make one. I feel no better when I hold either, so I am at a loss.

 

MirandaJane. I will have to look that book up. Thank you . How are you at the moment, I just read that you are tapering a hormone replacement now. Oh my that must be tough, going through a second taper. Did you follow the Ashton Manual for the benzo? It looks a bit fast at the end, I have been going down .1mg every 10 days or so from 3mgs to 2mgs, using tablets and liquid, but I haven't diluted it up until now. I think it does not suit me at all, even more so than the tablets, but then I have become so sensitive to everything, before I could eat and drink whatever I wished, Not so now, and the RX liquid has a lot of colouring and an artificial sweetener added to it, so it doesn't surprise me if I am reacting, as others have been known to as well. Still it's a way to make very small cuts,

I am now thinking about DMLT but not sure whether to use my newly delivered bottle of Valium or use almond milk and a tablet, as I know I can drink almond milk. How did you taper at the end? I know you have had a hard time. It all seems so unfair. I really regret ever going to my Doctor last March. It has taken everything from me. Oh well it's happened, and I have to work to change things. My Doctor surely wont and my psychiatrist said she would CT me if I went into hospital as she does not believe in withdrawals.

[[Sa...]]

Miranda,

 

I did a lot of praying.  I was lucky to find a rehab that had a Doc with benzo experience.  It was the first question I asked.  In my acute stupor, I’m not sure how I did it??  I was terrified and desperate.

 

My experience was not the norm.  I had great support in rehab.  Yes, I was labeled an addict, but I had the help and care I needed to survive Acute BWD.  I had food, a nice room, education, benzo wise (and compassionate docs), self care, and support.  These were things I needed.

 

SaraSue 

[[Sa...]]

Chin,

 

I was and still am traumatized by BWD.  I’m at 3.5 months since CT.  I’m not sure I could have done a long taper (had it been an option) if I would have had these horrid ongoing sxs.

 

I was in Acute wd for 5 weeks.  I’ve had horrible sxs.  Last night I was thrown back into acute for a 12 hour nightmare.  I generally have 20+ symptoms going on ALL the time!  My new norm.

 

This is temporary.

 

SaraSue 

[[Mi...]]

Jen, I started on Ashton's schedule, but it was too much for me. I eventually used the Benzo Book schedule, and went ever slower than that, microtapering on liquid, dropping a tiny amount each week. As much as I could tolerate. Your taper sounds reasonable. I was determined to get off, even though the symptoms were awful.Please remember to eat enough nutritious food. Almond milk is just almond juice and not as nutritious as milk. I am lactose intolerant so I drink milk that does not have lactose. Eggs are very  nutritious. I also ate baked chicken in addition to those things I listed earlier in this thread. I forced myself to eat, even when my stomach hurt, and to do some walking, even if it was back and forth in the house. Don't let your body fall apart. Focus on your food and walking and tapering. Congratulate yourself for every little success, even if it is surviving another day and dropping my dose a tiny bit. Hold on. You can do this. There are also books by Bliss Johns that are good. Find a new doctor.

MirandaJane

[[ch...]]

SaraSue. It sounds as though you found a decent rehab. That is something, but it doesn't make the here and now any easier, So many people struggling yet somehow Doctors wont acknowledge this problem exists. and for some it doesn't. Others it's a real trauma. I am so maddened that my Doctor prescribed this only last year to a woman of the 72 years old. I understand that there are older people like me on benzos but they were started on them years ago, or maybe they were given in care home, quite wrongly to keep residents quiet. But knowing the real dangers and especially to older  people who risk falls and dementia, It is a terrible thing to do, and the nurse abusing her authority by insisting I should take the Valium and not keep worrying about addiction. So wrong. I was a healthy person with an anxiety problem brought about by a major trauma. Now they have risked what life I have left without warnings to me not to take for more than 2 weeks and there are guidelines anyway that says they should not be prescribed to the over 65's. We the patients should not have to question their prescription or challenge their statements that they are safe. I am so upset, knowing the suffering we are going through. I hope things improve for you soon Sara. It nust be really tough right now. I will be thinking of you

 

MirandaJane, Thank you for the good advice. I will go carefully as I have really struggled already and don't want to be even worse, It really is hard to eat, but for some odd reason I can eat late at night, and so I do just to get extra calories. I try to eat healthily but rely on others for my food. If asked I prefer fish and salad that I cover with extra virgin olive oil and pink Himalayan salt. or Chicken, with green veg. But sometimes it's meat , Not my favourite, I try my hardest to eat as like you I fear a feeding tube, so in the night I eat what I can find, like oat crackers with a bit of feta cheese and salad leaves , or left over chicken, . fresh blueberries and organic plain yogurt. Depends what I have in my mini fridge. sometime I eat potato chips  hand cut cooked in sunflower oil and salted with sea salt, nothing else added. I know it's not the best ,but lots of calories, and don't tell anyone but I sometimes have a couple of squares of dark chocolate, as an indulgence with some plums to keep regular, that is my night feast. when I can eat, I don't gain any weight but am holding my own for now.

 

I will look into the books, is Bliss Johns. Baylissa? that people talk a lot about on here from the Bristol project?

 

I do hope things improve for you, You have had a very hard journey. Sometimes I wish I could have a cuddle and have someone help me with the taper, but you can't have everything, I have a comfy bed and food to eat and do not have to work, so that is something.

 

I have decided to try my liquid tonight just to get used to it again before making a cut, as I know it is different to the tablets from using it before, It does feel like a big reduction at first, so I am going to do that for a couple of days just .5mg in liquid form and the rest in tablet form and then in a couple of days I will take 1mg in liquid and 1mg in tablet, I have 2 doses a day  so I will then try the liquid morning and night with the tablet and no reduction, so after 4 days I hope I am used to the liquid again and will then make a dilution of 1mg Valium to 100mls liquid . and take 1ml out each day then divide the dose equally, till the mg is gone . I can speed it up or slow it down at will by taking more out or taking the 1ml away but for two days before the next 1ml drop. It's the best plan I can come up with for now, I want it gone I know that.  When down to 1mg I will use only liquid. I know it wont be easy because my journey so far has been terrible but how can I get better with this drug inside me. You take care on your journey, we will get there, I may not have a lot of years left at almost 74, but I want them to be good ones, not ruined by a Doctor's prescription I should never have been given last year.

 

Off to sleep now I think as it's late here, and I had a very bad night last night, 

[[Mi...]]

Chin - your diet sounds reasonable, as long as you keep your weight up and the food doesn't upset your stomach too much. You have found what works for you. Yes, Bliss Johns is Baylissa. Her journey is interesting, and she shows how different people have different reactions. I had a terrible night too - about two hours of poor sleep - so I'm going to hopefully crash soon. Take care of yourself.

MirandaJane

[[Sa...]]

Chin,

 

I’ll be thinking of you as well.  We are healing.  Hold on to that thought.  Your memory is better than mine as a short paragraph is all I can muster at this point.

 

SaraSue 

[[Ma...]]

Chin,

 

I’ll be thinking of you as well.  We are healing.  Hold on to that thought.  Your memory is better than mine as a short paragraph is all I can muster at this point.

 

SaraSue 

 

I think that's a great point SS, for everyone.  If you can write a whole page of great explanations, experiences, and conversation, there is a damn good chance your brain is ok  .  Mary

[[es...]]

I totally agree with Mary. Your brain is fine. Your whole body is just being assaulted and that brings a slew of symptoms. Esperanza

[[ch...]]

I am feeling so poorly, I am never well, and afraid that my brain and body are  not adjusting as I have gone down in dose. It's been a slow drop from a low dose and suffering all the time. I have held for almost 5 weeks now and the last 2 days tried to introduce liquid Valium so that I can eventually taper more gradually, but I am feeling even worse. Don't know what to do but go back to just my 2mg tablet of Valium for now. I can't understand any of this. I think my body hated Valium hence being ill all the time on it. and it's not mending as I try to get rid of it. It's a hard place to be. I  can't win. If I stay on it I suffer, if I taper off I suffer and my brain hasn't caught up. Don't know, just don't know

I am stuck here feeling really sick  tinnitus so loud, fear dreadful, weariness because of very little sleep,  can't eat, fingers numb. Just need some encouragement. I feel like my life is finished, I should be enjoying the time I have left, but I am suffering and the Doctors don't want to help,. they are convinced it's all anxiety. and need an anti depressant. I tried but  I cannot tolerate in this state with my CNS blown.

 

Not sure what to do now .