Support needed

[[An...]]

Hi,

I'm a new mom and after giving birth to my son started to experience insomnia that seemed connected to hormonal changes and broken new mommy sleep from night wakings with my son about four months after having him. I ended up being prescribed ativan to supposedly "help" with this. I have a family and personal history of extreme sensitivity to any kind of medication so I've never taken medications, I even avoid Advil or other over the counter cold or pain meds. But I kept thinking something was wrong with me and I felt desperate and was assured it was safe by my primary care doctor and then by a psychiatrist (neither the doctor or paychiatrist has ever seen anyone have the severe reactions I've had from it and from withdrawal). I started taking it nightly as prescribed beginning in May 2014 and took it for about 6 weeks. I was experiencing interdose withdrawal symptoms and though I was clueless that that's what was going on I started to believe that what I was experiencing was being caused by the ativan and it turned out I was right. I also had paradoxical reactions to the Ativan. A psychiatrist I saw ended up telling me to stop it as she started me on celexa and said that would take the place of the ativan (I had been experiencing extreme anxiety and depression as well as a multitude of other symptoms while taking the ativan). To make a nightmare story short, the celexa and cold turkey withdrawal almost killed me. The celexa gave me prolonged QT time of my heart and critical hypokalemia (and I had only taken 2.5 mg of it once a day for nine days - this is important so you can understand how sensitive my body is to medications). I had several ER trips and the doctors couldn't figure things out. My friend who is a new doctor knew right away that I was in acute/severe ativan withdrawal and helped me figure out a taper using ativan because due to my medication sensitivities it was too dangerous to try another benzodiazepine for my taper. Celexa was stopped but right before all heck broke loose with the adverse reactions I was having such horrible insomnia and depression that the psychiatrist prescribed seroquel. I only took it one night before everything turned into a nightmare. I experienced nearly every adverse reaction you can from the Seroquel too (I took 50 mg) including severe extrapyramidal reactions. All medications are now stopped. I tapered off the ativan for 7 weeks. That was 3 months ago. I'm still experiencing waves of withdrawal. The insomnia I had had before was absolutely nothing compared to what has assailed me from the Ativan and the other meds. I need support going forward as I'm starting to loose hope that this will ever end. My longest time feeling well and back to myself so far has been 5 days. Is there someone who has gone through this and made it out the other side who would be willing to be a text or email support person for me going forward? I don't know what else to do and am scared to go to a counselor to help me get through the remaining withdrawal symptoms because they may not understand ativan withdrawal syndrome or how sensitive my body is and hence why I am still experiencing it. There are so many doctors I saw who couldn't believe I was having such a horrible response after taking the medicine for such a short period of time and who just kept saying things like "you just need to learn to smile" when I was in severe cold turkey withdrawal and in the ICU. There is nowhere near enough knowledge about benzodiazepine withdrawal among the medical community and I was just blessed to have a doctor friend who had seen ativan withdrawal before and was able to quickly recognize what was happening with me (it was also a bonus that she has known me so well for 11+ years and knew that what was happening was not me and was because of the withdrawal and medications).

I would be so incredibly grateful to anyone who can help me, offer me any support, or give me hope that I will heal fully from this. When I'm blessed with a good window of time it is such a tease getting to feel well and like my old self again because then just when I start to believe it's finally over and I'm free from all the suffering I end up going through another wave of withdrawal. It has gotten more tolerable over time but it's still intense and difficult and I just want it to be completely over so I can spend my time enjoying my son and husband. Thank you so much to anyone who reads this.

 

 

Sent from my iPhone

[[Fi...]]

OH, sweetie, my heart goes out to you!  And I want to punch in the face anybody who said you "just need to learn to smile."  I'm so glad you have somebody in your corner who has known you a long time.  It's so easy to feel you're being written off as a total nut case.  I think it's a really good sign that you're having windows.  This shows you ARE getting better and will heal.  Unfortunately, as you will see if you read a lot of posts here, this process often takes way longer than we want to hope. 

 

It would be great if we could have counsellors who understood this.  Unfortunately we mostly don't.  My counsellor has no experience seeing somebody go through the kind of withdrawal issues I've had, and I often feel I'm educating her for future patients.  Fortunately she's willing to believe me and understands that when your brain is messed up like this, the usual cognitive therapies aren't that much help.  But they can help you try to cope with the situation.  I give my regular old counsellor more credit than any of the doctors for just helping me hang onto myself through this.

 

I hope you'll try a counsellor.  There's nothing that says you can quit after the first appointment if they rub you the wrong way.  I have found that just having an appointment with somebody who is in my corner has been a huge help.  Maybe it would be for you, too.  Especially when you've figured out more or less for yourself that you're a person who needs to stay off these meds and that time is going to be the only cure.

 

A book I found only recently is quit helpful.  It's called Renewal and Recovery by Fredericka Bayless (or something close).  She's a counsellor herself who went through benzo withdrawal.  She has a section for our caregivers that would be great for your husband to read.  Maybe my husband and I could have got through some pretty horrific times easier if we had both understood what was going on with my brain.

 

Of course you can PM me!  What people need in going through this is the feeling that people are hanging onto them, and you definitely sound to me like somebody worth hanging onto!

[[An...]]

Oh my gosh thank you SO much!! I can't believe how long it is taking me to heal. My doctor friend is even surprised, but she only saw one person in ativan withdrawal during her residency and didn't get to follow up with the patient after she was discharged from the hospital. I know I am so blessed to have my friend but can't rely on her alone for support. I will definitely PM you soon! Thank you sooooo much!!! And thank you so much for the hope!!! 

[[Fi...]]

Yes, Angelprint, what everyone on this board has pretty much figured out is that doctors don't know much about this and in too many cases do more harm than good by hinting that somehow we just aren't doing enough for ourselves to speed the healing.  Yes, this would be the healing necessary from the very drugs some doctor put us on!

 

Hang in there and PM me any time.  I'm right here, not going anywhere, and promise to answer you right back!

 

[[Ch...]]

Oh my gosh thank you SO much!! I can't believe how long it is taking me to heal. My doctor friend is even surprised, but she only saw one person in ativan withdrawal during her residency and didn't get to follow up with the patient after she was discharged from the hospital. I know I am so blessed to have my friend but can't rely on her alone for support. I will definitely PM you soon! Thank you sooooo much!!! And thank you so much for the hope!!! 

 

The good news (and there is good news) is that you're past the worst of it...you're off the psych med merry-go-round and time is what's needed to heal, and you will heal.  Your central nervous system is extremely sensitive and that takes time to heal.

 

Here's something I found to be very helpful:

 

Recovery Tips

 

1. Recovery from bei ng an accidental addict to benzodiazepines is serious business. It takes time for the central nervous system to heal and for neurotransmitters to stop being sensitive. None of us had the faintest idea that this kind of situation lay in front of us. So we are dealing with shock at what has happened as well as the real physical and mental/emotional symptoms of withdrawal.

 

2. Recovery is not linear, as it is with other illnesses or injuries. If we cut our hands, we can actually see the cut heal and the pain diminish over time. In benzo withdrawal we can be well one day and very sick the next. This is normal and we have to look at our healing differently.

 

3. Recovery is an individual thing, and it is difficult to predict how quickly symptoms will stop for good. People expect to be completely better after a certain period of time, and often get discouraged and depressed when they feel this time has passed and they are not completely better. Most patient support programs tell clients to anticipate 6 months to a year for recovery after a taper has ended. But some people feel better a few months after they stop taking benzos; for others it takes more than a year to feel completely better. Try not to be obsessed with how long it will take, because every day you stay off benzos, your body is healing at its own rate. If you do not follow this particular schedule, it does not mean there is something wrong or you are not healing. Even if you are feeling ill in some respects, other symptoms may disappear. Even people in difficult tapers see improvements in symptoms very early on. So don’t let these time-frames scare you. The way you feel at one month will not be how you will be feeling at three months or at six months.

 

4. It is very typical to have setbacks at different points of time (these times can vary). These setbacks can be so intense that people feel their healing hasn’t happened at all; they feel they have been taken right back to beginning. Setbacks, if they occur, are a normal part of recovery.

 

5. When people are in recovery, they have a lot of fears. One is that they will never get better. Another is that their symptoms are really what they are like — perhaps what they have always been like. Both of these fears are stimulated by benzo withdrawal. In other words they are the thought components of benzo withdrawal, just as insomnia is a physical component.

 

6. There is no way around benzo withdrawal and recovery—you have to go through it. People try all sorts of measures to try to make the pain stop, but nothing can shortcut the process. Our body and brain have their own agenda for healing, and it will take place if you simply accept it.

 

7. When you are having a bad spell, healing is still going on. People typically find that after a bad spell, symptoms improve and often go away forever. Try to remember this when times are hard.

 

8. There is no magic cure to recovery, but you can help yourself by comforting and reassuring yourself as much as possible. Read reassuring information, stay away from stress, ask your partner, family and others for reassurance, and go back to the things you did at the beginning if you are experiencing really tough symptoms.

 

9. When we start to feel better, it is very typical to try to do too much. We are grateful to be alive and we have energy for the first time in weeks or months. But this can be a dangerous time. When we do to much and take on too much too early, it re-sensitizes the nervous system. It doesn’t prevent healing in the long term, but it can make us feel discouraged. So try to pace yourself, even if you are feeling good.

 

10. You do need to respect your body during recovery, although you don’t need to make drastic changes to your lifestyle. Exercise, in any form is critical—even if you can only walk around the house or to the end of the block. Eating well and avoiding all stimulants is crucial. Regular high-protein snacks can help with the shakes and the feelings of weakness we have during withdrawal and recovery.

 

11. Recovery is all about acceptance, but this does not mean passive acceptance. Set small goals for yourself that are achievable. Try to keep exercise happening. Work at your recovery even if that means accepting you are sick—for now. You wouldn’t be hard on yourself if you were in a traffic accident and had injuries; you would work at rehab. Try to take the same attitude and approach to benzodiazepine withdrawal.

 

 

[Guest [ma...]]

This is the link to the original post of those recovery tips. Written by someone who has been through this and has recovered 100%.

 

[nobbc]http://www.psychmedaware.org/recovery_tips.html[/nobbc]

 

Another good post by the same person.........however I prefer to replace the word addiction with dependency.

 

http://www.psychmedaware.org/blog/what-if-i-never-get-better.html

 

You will heal from this and you are very fortunate that you found out sooner than later what was causing you to feel so unwell.

 

Take good care, mandala

 

 

 

 

 

 

 

 

edit: commercial link (Paypal)

[[Ch...]]

Great links, mandala.  I'm glad to have the source of the 'Tips' and hadn't seen the second link at all.

Challis 

[Guest [ma...]]

Great links, mandala.  I'm glad to have the source of the 'Tips' and hadn't seen the second link at all.

Challis 

 

Welcome Challis. Just like to share the source where possible. 

[[An...]]

Oh I'm so grateful for all of your responses and support. Saturday was an especially tough day and I was really losing hope. I'm so glad I took a chance and decided to post on here. I kept putting so much pressure on myself at each window, like that had to be my last wave ever and then I'd have another wave and just feel so hopeless. I'm still learning how to navigate the site so I will figure out how to PM soon! I really can't thank you all enough for the hope and support!!!

[[Fi...]]

Angel--Your posting here is a win-win for me because I am at the point where I find it really helps ME if I feel I have any advice or comfort to offer anyone.  I "lurked" for fifteen months, just taking comfort in knowing others were going through the same thing, but never signing on officially until a couple of weeks ago.  I finally had to sign on when I realized I was feeling well enough that I could say something encouraging to somebody else and that to withhold this wouldn't be right.  Actually, I should have signed on long ago, I now realize, because with the names and withdrawal histories attached to the stories, it's easier to follow people.

 

I really identify with you because I went through a depression when my first son was little.  It wasn't post-partum, although I had shrinks trying to tell me that it was and get me to say that I was really pretty unhappy at being a mother, wasn't it?  So not true!  I had to take fertility drugs to get him in the first place and we couldn't have been more thrilled.  I slipped into the depression when I weaned him and it turned out I had  completely stopped making estrogen.  How happy is a woman going to be at 29 with NO ESTROGEN?   Too bad it took them so long to figure it out.  Anyway, after being so down I was suicidal, finally got through that and was so glad I'd hung on.  In the next few years I had twins and my books started to be published.  Good thing I hung on!  I shudder to think how much I would have missed.

 

And now this first son has given us our first grandson. He's about to turn one so he must be quite close to your little guy?   We take care of him every weekday morning, so I'm reminded all over again of the joy and exhaustion of motherhood.  Not that I get exhausted!  My husband is right in there being as wonderful of a grampa as he was a daddy.  When we were awaiting the baby's arrival, people wanted to reassure me that this baby would "fix" me, as if my problem was just that I needed something pleasant in my life.  Of course he couldn't just make withdrawal go away, but the flood of oxytocin when I held him was the most amazing brain medicine!  And as a grandma, I could just sit there and deliver first class naps holding him in the rocker for an hour and feel content.  I know, as a young mother, you're frantic to jump up and get the laundry going or whatever and those wakeful nights can be exhausting.  Now I get a lot of joy and healing from this darling child of ours, but I'm sure you know the feeling of really hating having this little person see you when you're not your best.  It takes a lot of energy to be "on" for a baby the way you want to be, I know.

 

I hope it's not discouraging to you to find out how long it is taking people on this board to heal.  If you are having windows of this length three months out you are really doing very well.  It's hard to keep the faith that YOU WILL GET WELL, but hopefully hearing stories about other people coming through this will be of comfort to you.

 

I look forward to a PM from you and maybe finding out where you are.  I just wish I could refer you to the counsellor who has helped me so much because she would be completely sympathetic and kind.  Kindness is what I have been craving and, like you, I certainly wasn't getting any from the various doctors involved.  I do feel kindness is shown on this board.

 

Hold on, Angel.  Hold on for dear life.

 

:smitten:FJ