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Manysilver
@manysilver

Posts: 11
Joined: Jul 30, 2016

Multiple Sclerosis/Depression/PTSD

Posted by @manysilver, Jul 30, 2016

I am a 66 yr old female that has been diagnosed with MS/Major Depression/PTSD. In the early 2000s I was diagnosed with Depression and was placed on Ativan. After moving to a new location and getting a new psychiatrist, he started to wean me off of the Ativan. He didn’t do it right and I went into a very bad withdrawal. I dropped that psychiatrist (had him fired) and ended up with my current female psychiatrist. Since then I have had two hospitalizations and have multiple drugs prescribed and changed to where I am no longer on any anti-depressants. I have suffered multiple serious side effects from taking and going off of these drugs. Sleeping is very difficult for me and I am taking Clonzepam 1mg along with 300mg of Trazadone for sleep. I am very restless sleeping and don’t feel like I slept well when I wake up. I haven’t felt like myself for years now and my psychiatrist says I won’t feel like I did when I was on Ativan. When I was on that for several years and had energy and the will to live life to the fullest. Now I think of dying every day (won’t do that as I am afraid of dying) and just don’t have the desire to do anything. I used to have pride in the way I looked and dressed and now I don’t care. The drugs I was on made me gain weight so my clothes don’t fit right and I haven’t had the desire to go shopping. My husband is now my caretaker in some respects as I have no desire to do anything. I have to force myself to get up from my chair everyday to just do the smallest of tasks. My feeling is that there isn’t any medication or therapy that has helped me and I am about at the end of my rope. There isn’t any true information that my Multiple Sclerosis is contributing to what is going on with me at least that is what my neurologist ang psychiatrist say. They just don’t know. I have what they call Benign MS so I am not wheelchair bound. Is there any hope for me? I need help but I don’t know what to do. Can anyone out there help me?

REPLY

Welcome to Connect, @manysilver. Good for you for having the courage to post here today. It’s not easy.
I’d like to introduce you to other members. For example meet @StacyR @carolyns and @jessejames4534 who have MS and will understand your struggles.
Sounds like the sleep issue is the first to get under control. @jbyrd @sylviaanne @missyb57 @jmbjar @book2075 might any of you have suggestions for ManySliver?

Thanks Colleen for referring me to those other members but unfortunately they don’t offer me anything I don’t already know. I REALLY need help & hope. Jane L @manysilver

Dear Manysilver: I am in much the same situation as you, except I have dry eye instead of MS. I’m on clonazepam but no anti-depressants, and don’t have the desire to do anything. But I wanted to make some suggestions, rather than blather on about myself. Have you tried taking the herb Valerian for sleeping? I have taken it as a tincture or as pills and despite its aroma (it smells like Parmesan cheese and/or smelly feet!) it helps me to fall asleep and stay asleep and awaken feeling somewhat refreshed. As with any drug you should read up on it in the literature or the internet and MUST consult with your physician before you take it. It IS a powerful herb and has interactions with other drugs and herbs. One place I know you can purchase it by mail is at http://www.swansonvitamins.com. I’m sure there are equally reputable sources for it at other companies and stores–this is just the one I know.

Another thing you could try for sleep is Melatonin. I take the dose recommended on the bottle, but it doesn’t work for me. It messes up my sleep, waking me fully up in the middle of the night and making me super-tired the next morning, so I fall asleep THEN when I should be getting out of bed, but some people find it useful. I don’t know much about it, so again, you should read up on it and talk to your doctor BEFORE taking it, even though it is over the counter at all the pharmacies I visit, looking all innocent in its little bottle.

I’m still working on getting through the withdrawal effects of going off Cymbalta 3 weeks ago (having tapered according to the doctor’s plan). I don’t even know who I am right now, and whether I can trust a thought, or believe something my brain is telling me. I am hanging in there though, will wait out the withdrawal symptoms, and start fresh when they are gone. I keep fantasizing that one day I will simply wake up, and ha, ha, (“poof”) the real me will be back again! No matter what has happened in the past to me EVERYDAY IS A FRESH START. I try to remember that but can’t always.

I hope some of my comments and suggestions are worthwhile. Most of the statements you made could have come out of my mouth, so I truly know how you feel.

Best regards,

Warren

@frank1

Dear Manysilver: I am in much the same situation as you, except I have dry eye instead of MS. I’m on clonazepam but no anti-depressants, and don’t have the desire to do anything. But I wanted to make some suggestions, rather than blather on about myself. Have you tried taking the herb Valerian for sleeping? I have taken it as a tincture or as pills and despite its aroma (it smells like Parmesan cheese and/or smelly feet!) it helps me to fall asleep and stay asleep and awaken feeling somewhat refreshed. As with any drug you should read up on it in the literature or the internet and MUST consult with your physician before you take it. It IS a powerful herb and has interactions with other drugs and herbs. One place I know you can purchase it by mail is at http://www.swansonvitamins.com. I’m sure there are equally reputable sources for it at other companies and stores–this is just the one I know.

Another thing you could try for sleep is Melatonin. I take the dose recommended on the bottle, but it doesn’t work for me. It messes up my sleep, waking me fully up in the middle of the night and making me super-tired the next morning, so I fall asleep THEN when I should be getting out of bed, but some people find it useful. I don’t know much about it, so again, you should read up on it and talk to your doctor BEFORE taking it, even though it is over the counter at all the pharmacies I visit, looking all innocent in its little bottle.

I’m still working on getting through the withdrawal effects of going off Cymbalta 3 weeks ago (having tapered according to the doctor’s plan). I don’t even know who I am right now, and whether I can trust a thought, or believe something my brain is telling me. I am hanging in there though, will wait out the withdrawal symptoms, and start fresh when they are gone. I keep fantasizing that one day I will simply wake up, and ha, ha, (“poof”) the real me will be back again! No matter what has happened in the past to me EVERYDAY IS A FRESH START. I try to remember that but can’t always.

I hope some of my comments and suggestions are worthwhile. Most of the statements you made could have come out of my mouth, so I truly know how you feel.

Best regards,

Warren

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Hi Warren: What a relief! There is someone out there that finally understands what I’ve been through and am currently going through. I am currently taking Melatonin per directions of my psychiatrist but I may ask her whether I should go off of it to see if I am more alert when I wake up. To combat my sleepiness in the morning, my psychiatrist prescribed D-Amphetamine Salt Combo (Allderal sp?) an upper. Nothing like taking one pill to combat the side effects of another drug. I hate that! I’ll ask my psychiatrist about Valerian. Meanwhile, I still am suffering. I have no friends to speak of and I am estranged from my family so there isn’t anyone I can really talk to. Thanks Warren for understanding and your words of comfort!

@frank1

Dear Manysilver: I am in much the same situation as you, except I have dry eye instead of MS. I’m on clonazepam but no anti-depressants, and don’t have the desire to do anything. But I wanted to make some suggestions, rather than blather on about myself. Have you tried taking the herb Valerian for sleeping? I have taken it as a tincture or as pills and despite its aroma (it smells like Parmesan cheese and/or smelly feet!) it helps me to fall asleep and stay asleep and awaken feeling somewhat refreshed. As with any drug you should read up on it in the literature or the internet and MUST consult with your physician before you take it. It IS a powerful herb and has interactions with other drugs and herbs. One place I know you can purchase it by mail is at http://www.swansonvitamins.com. I’m sure there are equally reputable sources for it at other companies and stores–this is just the one I know.

Another thing you could try for sleep is Melatonin. I take the dose recommended on the bottle, but it doesn’t work for me. It messes up my sleep, waking me fully up in the middle of the night and making me super-tired the next morning, so I fall asleep THEN when I should be getting out of bed, but some people find it useful. I don’t know much about it, so again, you should read up on it and talk to your doctor BEFORE taking it, even though it is over the counter at all the pharmacies I visit, looking all innocent in its little bottle.

I’m still working on getting through the withdrawal effects of going off Cymbalta 3 weeks ago (having tapered according to the doctor’s plan). I don’t even know who I am right now, and whether I can trust a thought, or believe something my brain is telling me. I am hanging in there though, will wait out the withdrawal symptoms, and start fresh when they are gone. I keep fantasizing that one day I will simply wake up, and ha, ha, (“poof”) the real me will be back again! No matter what has happened in the past to me EVERYDAY IS A FRESH START. I try to remember that but can’t always.

I hope some of my comments and suggestions are worthwhile. Most of the statements you made could have come out of my mouth, so I truly know how you feel.

Best regards,

Warren

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Warren: I forgot to tell you that I am taking Clonazepam (Very Addictive) at night as taking it during the day will make you tire and sleepy. Don’t take Ativan (Lorazepam) as it is also very addictive and really screwed me up for two years as I was being tapered off of it. If a drug has side effects going on and off it, I will have them even ones not listed in the pamphlets. Take care JaneL @manysilver

Dear Jane: I probably didn’t mention it in my first reply, but I am in the process of getting off Cymbalta and Lexapro. It has been 3 weeks with no pills of either kind, and it is pure living hell. I keep walking around inside the house saying to my wife “How am I going to do this? When is this ever going to stop? I don’t know how I can go on.” and similar things. I am nauseated most of the time, have no appetite, and nothing tastes right. I guess I just need to be patient.

And you are absolutely right about side effects that aren’t even listed on the pamphlets. I have to argue with my docs to get them to believe something is a drug side effect. Their standard line is either “That’s not one of the listed side effects.” or “I have several patients on drug X and no one else reports those side effects.” I just want to scream, and one time I replied to my doc in the nastiest voice I have: “Well, I’m one of your patients, and I’m reported a side effect!” He resented my disrespecting him (I don’t blame him), but he took me seriously that time. My reporting atypical side effects has happened so often to me that doctors are actually starting to believe me!

Hang in there, don’t give up, and take good care of yourself. Best regards, Warren

@frank1

Dear Manysilver: I am in much the same situation as you, except I have dry eye instead of MS. I’m on clonazepam but no anti-depressants, and don’t have the desire to do anything. But I wanted to make some suggestions, rather than blather on about myself. Have you tried taking the herb Valerian for sleeping? I have taken it as a tincture or as pills and despite its aroma (it smells like Parmesan cheese and/or smelly feet!) it helps me to fall asleep and stay asleep and awaken feeling somewhat refreshed. As with any drug you should read up on it in the literature or the internet and MUST consult with your physician before you take it. It IS a powerful herb and has interactions with other drugs and herbs. One place I know you can purchase it by mail is at http://www.swansonvitamins.com. I’m sure there are equally reputable sources for it at other companies and stores–this is just the one I know.

Another thing you could try for sleep is Melatonin. I take the dose recommended on the bottle, but it doesn’t work for me. It messes up my sleep, waking me fully up in the middle of the night and making me super-tired the next morning, so I fall asleep THEN when I should be getting out of bed, but some people find it useful. I don’t know much about it, so again, you should read up on it and talk to your doctor BEFORE taking it, even though it is over the counter at all the pharmacies I visit, looking all innocent in its little bottle.

I’m still working on getting through the withdrawal effects of going off Cymbalta 3 weeks ago (having tapered according to the doctor’s plan). I don’t even know who I am right now, and whether I can trust a thought, or believe something my brain is telling me. I am hanging in there though, will wait out the withdrawal symptoms, and start fresh when they are gone. I keep fantasizing that one day I will simply wake up, and ha, ha, (“poof”) the real me will be back again! No matter what has happened in the past to me EVERYDAY IS A FRESH START. I try to remember that but can’t always.

I hope some of my comments and suggestions are worthwhile. Most of the statements you made could have come out of my mouth, so I truly know how you feel.

Best regards,

Warren

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Hi Jane: I don’t have many friends either, and I have a brother who is far away and also mentally ill. Fortunately I have my wife’s family and her children by her first marriage, but as you can imagine, although we love/like each other, they, too, are far away, and I don’t always have a lot of positive things to share with them in any case.
I have not been religious in my life, but I’m thinking about becoming so. Sometimes I think that only a miracle will save me!
Best regards, Warren

Warren: There are drugs that your doctor can prescribe for you to help with the withdrawal symptoms. I had the same withdrawal symptoms you are having and I thought I was going to die and go nuts whichever came first. Get your doctor to order you something to tide you over the rough spots. My doc ordered Risperidone which helped a lot. But then when I went off of it I had and still have problems with my teeth and jaw. Being patient isn’t the answer….get on the phone and demand that doctor order you something. YOU DON’T HAVE TO SUFFER!!!! And don’t mind disrespecting him…they get paid enough money to take it otherwise find another shrink.
I am with you. JaneL @manysilver

@manysilver

Warren: There are drugs that your doctor can prescribe for you to help with the withdrawal symptoms. I had the same withdrawal symptoms you are having and I thought I was going to die and go nuts whichever came first. Get your doctor to order you something to tide you over the rough spots. My doc ordered Risperidone which helped a lot. But then when I went off of it I had and still have problems with my teeth and jaw. Being patient isn’t the answer….get on the phone and demand that doctor order you something. YOU DON’T HAVE TO SUFFER!!!! And don’t mind disrespecting him…they get paid enough money to take it otherwise find another shrink.
I am with you. JaneL @manysilver

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Warren: My mind is going south because I wanted to mention to you that I am an atheist and have been since I was 16. With the abuse I suffered I found no amount of praying ever helped. I hope you aren’t doctoring with the VA as I worked as a psych nurse and the doctors there were frequently as nuts as their patients. Oh the horror stories I could tell you about that system!!!!

@manysilver

Warren: There are drugs that your doctor can prescribe for you to help with the withdrawal symptoms. I had the same withdrawal symptoms you are having and I thought I was going to die and go nuts whichever came first. Get your doctor to order you something to tide you over the rough spots. My doc ordered Risperidone which helped a lot. But then when I went off of it I had and still have problems with my teeth and jaw. Being patient isn’t the answer….get on the phone and demand that doctor order you something. YOU DON’T HAVE TO SUFFER!!!! And don’t mind disrespecting him…they get paid enough money to take it otherwise find another shrink.
I am with you. JaneL @manysilver

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Hi Jane: I just left a message with my psychiatrist about the severity of the withdrawal symptoms. They will call me back and probably schedule an appointment. I wouldn’t have done it without your encouragement. Thank you so much! Warren

Dear ManySilver and Warren;

If you have the energy to leave the house a local mediation group might be able to help you. They are often found in Unitarian, Presbyterian and Quaker churches if not Yoga and Wellness Centers. The people I have meant there have depression and “heavy life” issues. They use meditation to sort out the good feelings from the bad feelings along with drugs form their therapists. If you want to download the free “Insight” app onto your smart phone, is helps you meditation from home. I hope you find ways to heal/ cope from your abuse ManySilver, a lot of us are on the same ship just different decks Withdrawal/side effects are brutal and you are not alone.

@book2075

Dear ManySilver and Warren;

If you have the energy to leave the house a local mediation group might be able to help you. They are often found in Unitarian, Presbyterian and Quaker churches if not Yoga and Wellness Centers. The people I have meant there have depression and “heavy life” issues. They use meditation to sort out the good feelings from the bad feelings along with drugs form their therapists. If you want to download the free “Insight” app onto your smart phone, is helps you meditation from home. I hope you find ways to heal/ cope from your abuse ManySilver, a lot of us are on the same ship just different decks Withdrawal/side effects are brutal and you are not alone.

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Thank you book2075 for the suggestion. I have been a meditator since the 1970’s (nor regularly, though), and have done some Mindfulness Based Stress Reduction also. They both do help some. Best wishes, Warren

@manysilver: As a non-physician, I shall give you my free opinion. You were on long-term therapy with Ativan (generic lorazepam) and it seems to me that you are now suffering from benzodiazepine withdrawal syndrome.
https://en.wikipedia.org/wiki/Lorazepam
https://en.wikipedia.org/wiki/Benzodiazepine_withdrawal_syndrome
You might attempt to find a psychiatrist (or neurologist) who is willing to treat you with lorazepam for long periods with frequent “drug holidays” to prevent dependence on lorazepam from becoming too bad.

Thanks for the info on the withdrawal from Ativan. It was a nightmare of the worse kind and besides that I had a male shrink that was god awful. Although I was doing fine on the Ativan at the time ( had to get a new shrink because of a move) the new shrink told me he would refuse to treat me unless I agreed to discontinue use of the Ativan. I didn’t know what I was in for and agreed to go off of it. He didn’t warn me about the side effects of going off of Ativan even though he was doing it on a sliding scale. Even doing that I still had a horrible reaction for several years. After four years now I am still not myself. I complained to the clinic administrator about what this doc did to me and because he had other patient complaints he was terminated. Now he is doing his bad medicine with others as here in Wisconsin you can’t sue for malpractice anymore. My current psychiatrist has me back on Ativan only cause I begged her to. Told her I really felt good on this medication but we’d have to watch it closely. I am starting to feel some better but time will tell. Thanks for the info! Manysilver

@manysilver

Thanks for the info on the withdrawal from Ativan. It was a nightmare of the worse kind and besides that I had a male shrink that was god awful. Although I was doing fine on the Ativan at the time ( had to get a new shrink because of a move) the new shrink told me he would refuse to treat me unless I agreed to discontinue use of the Ativan. I didn’t know what I was in for and agreed to go off of it. He didn’t warn me about the side effects of going off of Ativan even though he was doing it on a sliding scale. Even doing that I still had a horrible reaction for several years. After four years now I am still not myself. I complained to the clinic administrator about what this doc did to me and because he had other patient complaints he was terminated. Now he is doing his bad medicine with others as here in Wisconsin you can’t sue for malpractice anymore. My current psychiatrist has me back on Ativan only cause I begged her to. Told her I really felt good on this medication but we’d have to watch it closely. I am starting to feel some better but time will tell. Thanks for the info! Manysilver

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@manysilver, I would say that psychiatrist who took you off Ativan without protection is the last straw. I hope you turn him in to state medical licensing authorities and his national association. Hang him out to dry in the hot sun!

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