Jonhra - A decade on medication and a fortnight free...

[jonhra]

Hello everyone,

 

 

I found this site by Googling “tapering off medications”.  I've been taking Celexa and Lamotrigine for over 10 years and the side effects have been so awful (mimicking MS symptoms) I decided I'd rather find some other way of coping.  I have also been taking Lithium for many years but tapered off completely about 6 months ago.  I don't seem to have any ill effects and my moods haven't been changing so that's a wonderfully fortunate thing.

 

 

My husband passed away early last year and I made a major move to another state (by myself without family nearby) for financial reasons.  I'm retired and it's just me and my dog so my life is fairly quiet. I can make it as stress free as one possibly can while coping with day-to-day life.  That's why I decided to taper off my medications.  Since it’s just me, I can take my time and cope the way I need to cope without worrying about how I’m affecting others.

 

 

I’m off now.  Just barely.  As in this last week.  A little shaky, a whole lot anxious but I seem to be ok for the most part.  Sometimes I get really cranky and wonder why, then realize the reason and then I’m ok.  As long as I’m mindful of why I’m feeling the way I’m feeling, I can do something constructive about it.  A lot of time it’s just pouring a nice cold glass of iced tea and other times I need to sit on the sofa and stare at my dog.  She’s pretty and it makes me happy when I look at her.   

 

I’ve never had much luck finding health professionals I’m comfortable talking to.  I imagine part of it is my illness but I think another part of it is that the medical profession itself is so stressed out that patients have to take the reins if they feel their healthcare isn’t what they would like it to be.  Sometimes it’s just easier to pull away and take care of a problem instead of fighting and being frustrated with a system that isn’t equipped to help an individual, on a time intensive, cost-effective basis.  Fortunately, my emotional/mental issues can be handled as long as I’m careful and vigilant.  That’s not the case for everyone so I’m fortunate and thankful.

 

 

I’m truly grateful I found this site.  I’ve been “lurking” around a little and am so pleased with what you do that I felt I should actually register and be a “real” part of the group.  Thank you.

 

[dalsaan]

Welcome Jonhra, glad you decided to join in. You've obviously had a lot of changes in your life, nice to hear your dog has been with you on the journey.

 

 

Take care

 

Dalsaan

[Karma]

Hi Jonhra

 

Welcome to our community.  It sounds like you just came off of your last med ... monitor your symptoms and keep us posted.  What was your rate of taper and what was the last drug you dropped? 

 

I'm delighted to hear you have a loving pet to help you through this ... many of us have pets who are part of our families  .

 

Karma

[Meimeiquest]

Hi Jonhra,

 

Welcome and good luck! I am sorry for the loss of your husband, but glad you seem to be finding your way. I would be interested to hear anything you would like to say about leaving mood stabilizers behind...how you prepared yourself, or whatever.

[jonhra]

Thank you everyone for your welcoming me.  I’m sorry I’ve taken so much time to answer but I have difficulty putting my thoughts down when I’m in one of my “down modes”.  My mood swings tend to be short and flat and they’re not horribly debilitating (or at least not so much that I can’t burrow down in order to manage them) but I’m going through one of my low periods right now.  At this moment, here in my kitchen eating buttered toast and sipping black coffee, I’m sort‘a ok so thought I’d write while the writing was good.

 

I’ve always been depressive more than anything else.  I believe I’m actually just depressive and my “highs” just seem “high” because then I’m acting like a “normal” person.  It sounds like a joke but I doubt it really is.  Anyway, about 15 years ago I was going through peri-menopause.  That bites and the hormone swings brought out the worst in me.  I became unbearable even to myself.  The hot flashes were the least of it.  My anger and rages were through the roof.  HRT therapy was out of the question.  I’d never been able to take even the lowest dose birth control pill so there was no way I could take anything even closely related to a hormone.  When I went to a doctor he diagnosed me as bi-polar (instead of depressive and menopausal) and prescribed Paxil, Prozac, and other medications I don’t even recall.  The side effects of most of them were so nasty that it was a rough road for quite awhile. Warfarin induced paranoia and I thought I could do “magical” things.  I felt as if I was being slowly poisoned. Perhaps I was although not quite the way I believed it to be at the time.  Fortunately, I have a tiny spark inside me that eventually/usually/hopefully points me to what’s happening to me and I went to my doctor insisting I use something else.  He dismissed my Warfarin story as unimportant and not terribly interesting but conceded that since I was unhappy with it we would try something else. 

 

We finally settled on Citalopram (Celexa) 20 mg and Lamotrigine (Lexapro) 100 mg daily along with a small dose of Lithium (I don’t remember what it was).

 

I’ve been taking antidepressants since 1998.  I’m tired of them.  I’m tired of feeling like crap not only emotionally but physically.  I exhibit symptoms of MS and have fallen more times than I care to think about.  I usually “tip over”.  Yup, just kind of lean over and slide into a wall. If a wall’s not there, I better grab something quick.  My knees need to be replaced (no I’m not going to…I’m fine as long as I avoid steps and stairs) and I’m not particularly young (I’m a 62 year old woman) but I don’t smoke and I try to keep my wine consumption down to about 2 glasses a week or around a bottle a month, spread out.

 

I stopped taking Lithium about a year ago.  I think it was not long after my husband passed away.  I decided I really didn’t want to suppress my upswings.  I NEED those upswings.  They’re what get me into the shower in the evening before bed and what wake me up in the morning.  I haven’t regretted that a bit.

 

I mentioned in my first post that I have difficulty dealing with doctors.  I imagine many of us do.  I don’t dispute that doctors know a lot more than I do about many things.  But doctors don’t know “me”.  Even I don’t know me as well as I’d like to. The doctor gave me a check list on a piece of paper and diagnosed me from my little x marks. Yeah, that’s really in depth diagnosis and treatment. My point is that it’s easy getting button-holed and stuck there until someone rips out the buttons and replaces them with a zipper.  It’s easier to stay with the status quo and frankly doctors don’t have the time to probe into a patient’s personal feelings and life even if they’re inclined to in the first place.  Doctors also dislike patients who self diagnose.  So what?  It’s not like they knew me in the first place.  Once the diagnosis is made, the patient is pretty much stuck with it.  Subsequent doctors want to know what their predecessors diagnosed.  Unless the patient flat out lies and is caught out or there’s compelling evidence (and why would one bother to question?) the diagnosis sticks.

 

I’m tired of paying doctors (and yes, I’m a self-pay without insurance) who are too busy and over-worked to pay attention to me on a personal basis.  I’m tired of being dependent upon chemicals created outside my body that will help me function on a daily basis.  I want to spend whatever time I have left on this earth living my life the way I want to live.  I've decided to do what I feel is right for me and do it now.

 

First I cut my Citalopram in half.  That worked out to 5 mg a night before bed. I used a pill minder and would lay out my doses for a two week period.  I did that for 2 weeks. For the next two weeks I would take 5 mg every other night.  I was able to stop then. For a day or two I was a little anxious feeling but that was really about it.  I was fortunate.

 

Once I got off my Citalopram I decided Lamotrigine was next.  I cut my Lamotrigine pills in half to 50 mg and took them for 2 weeks.  After two weeks I took 50 mg every other day.  The Lamotrigine was a bit more difficult than the Citalopram so for the next few weeks I took 50 mg every 3 days.  It was just enough to keep the nausea and the shakes away.  Now, I’ve stopped completely.  It’s been about 2 weeks.

 

This isn’t the first time I’ve done this.  It’s the third.  The differences among this time and the others are several.  My stress level has decreased.  I live alone since my late husband passed away.  He was ill for the nearly 30 years we were married and I was his only caregiver during the last few years of his life.  I’m also in early retirement and my home is mortgage free.  My son, his wife and my 2 year old granddaughter live out of state, and while I miss them terribly, I’m in touch with them every day by text messaging, email, phone and video.  It’s not the same as being with them but it’s certainly more peaceful and quiet. My son is 43 and this is his first (only) marriage and child, so it’s been a long, long time since I’ve been around young children and the chaos involved.

 

These differences are the reason I’ve been able to stay off my medications this time.  I’m alone and can cope without having to deal with outside issues.  I do/did have withdrawal side effects.  I thought I was going to pass out at least once a day.  I’ve become light-headed, shaky and so anxious I thought I was going to collapse.  So I would collapse.  I’ll either sit down or lie down and drink some juice or eat some sweet fruit for the sugar lift.  Sometimes I’ll stay down for several hours.  I don’t worry about it.  I’m not living on a set time table so artificial time constructs don’t really matter unless I have an outside appointment that interferes.  I’ve never been able to stay off this long before so I know now I just need to keep plodding along. 

 

That’s why I’m attracted to this forum.  I need to keep plodding along, observing my reactions to things, coping and understanding my feelings.  I know I’m going to feel like crap off and on until the day I die but since that’s a pretty normal human condition, I would just like to be around people who understand how I feel.

 

I read a lot of information on how to go about withdrawing from anti-depressants before I started.  I read about people who had to change to liquid forms of their medicine in order to taper off slowly enough to get through the process.  I read about physical and emotional side effects.  I did a lot of homework.  I tried to be prepared.  I can't thank people who have shared their stories enough.

 

If you read this entire post, thank you for hanging in there.  I truly appreciate your thoughts and concern.

 

Jon

[Meimeiquest]

Hi Jon,

 

Thank you for sharing a bit of your story! You can have your next career as a writer! Thanks for joining us.

[Jemima]

Welcome, Jonhra.  As you probably have gleaned from this forum, we strongly discourage going off of antidepressants and other psychiatric drugs cold turkey or by a fast taper.  I hope that you're one of the fortunate few who can do this successfully, but just in case, please read this topic:

 

About Reinstating and Stabilizing to Stop Withdrawal Symptoms

 

I can't tell from your posts how long you've been off of Celexa, but two weeks off of Lamotrigine isn't very long.  For safety's sake, you might want to reinstate just a bit, perhaps 10 mg., and taper off slowly from there.  I'm concerned that these rapid tapers--and they were very fast--will come back to bite you down the line.  (And just for the record, Lamotrigine and Lexapro aren't the same thing.  100 mg. of Lexapro, an SSRI, is enough to kill a person. Lamotrigine is an anticonvulsant which is sometimes used to treat bipolar.)

 

There is lots of information on how to cope with withdrawal symptoms in our 'Symptoms and self-care' discussion that may be useful whether or not you decide to stay the course.

 

I'm glad that you've found us and that we've already been of help to you.

[jonhra]

Thank you Jemima.  I appreciate your concern and I appreciate your correction on the lamotrigine.  I confuse names and don't realize it many times until it's pointed out.

 

Thank you for your concern about my withdrawal.  You may be right but since the "deed has been done" I just needed other people I can talk to about how they feel.  I spent several hours writing that post because I was invited to not because it was fun.  It's hard for me to make friends, meet people and talk about my issues.  Perhaps this isn't the place either.  I don't know.  Even at my age my social skills are very poor and my skin is thin.  I've also found that once a first impression is made, do-overs are invariably useless.

 

I've tried to figure out how to leave this group but haven't found the instructions.  If you would delete my membership I would appreciate it.

 

Sincerely,

Jonni

[Nikki]

Johnra, this speak volumes to me.

 

"These differences are the reason I’ve been able to stay off my medications this time.  I’m alone and can cope without having to deal with outside issues."

 

I am sorry for the loss of your husband.  Your first post actually had a soothing effect for me, maybe the way you put things.  Thank you.  You sound like a lovely lady.  Yep....dogs are man's best friend and women's too:)

 

It's amazing you have been able to go thru the grief process and get off meds.  Strong woman....

 

Nikki

[jonhra]

Thank you Nikki.  You made me cry with your kindness.  Thank you 

[Meimeiquest]

Hi Johnra,

 

You're not going anywhere (I hope)....there is so much room for you in this tent. In the months I've been here, many have come at the same place you have...first off with some withdrawal symptoms. Very, very few come in contemplation of the perfect taper, and we all have to sort things out for ourselves. Some decide to reinstate and some don't. Whatever your experience, it adds to the knowledge base of the range of things that can happen. I have tapered faster than advised, but I have always felt welcome. But it is good to know that you are in a window where you can usually successfully reinstate if you WANT to. I think one's responsibilities often do impact our choices; nothing's happened to me that I couldn't take lying down....it's keeping up with everything else that's hard. But I have a high schooler with some issues and I need to get my head clear ASAP to try to help her before she's grown. Alto often says we are in a place where there are no good options, so we do the best we can. I look forward to hearing much more from you!

[jonhra]

Thank you everyone for your comments.  I don't plan on reinstating.  I've gone long enough that if I were to reinstate, I'd be at the same place I started.  Since I felt crappy when I was on medication I have no reason to believe that what I'm feeling now is any worse.  

 

I'm moody (and obviously) touchy but I'm that way anyway so I just need to deal with it. Reinstating would just send me back to a path I'm trying to leave.

 

I thought I made it clear I felt fortunate that my withdrawal symptoms weren't debilitating and that I understood my experience was undoubtedly very different from that of others.  I'm not sure why I was told I should try or consider reinstating or that I should be worried about how I was being affected.  Why?  I'm doing fine.  I said that.  I said I'm moody and that I had some physical symptoms at first but they were mild and are fading away.  Frankly, I almost felt as if I were being attacked.  Undoubtedly too strong a word but that was my first reaction.

 

My purpose in joining this forum was to share my experience and hopefully make some friends.

 

Sincerely (and a little crankily)

Jonni

[Meimeiquest]

Well if sincerity and crankiness are what it takes...I'm so in! I am doing menopause and drug withdrawal and other health problems and husband-in-career-crisis and teenagers (teaching one to drive) and well may have a real mental illness. The b word doesn't do it justice. But we make it one day at a time. And somehow I feel there is a deep spiritual meaning to all this. Glad you can be here!

[Jemima]

I'm very sorry if you felt that you were being attacked. I was only concerned that you might have delayed withdrawal symptoms, as many of our members have had after a fast taper or cold turkey.  Because there's a window of only about a month for reinstating safely, I wanted to be sure you had the information at hand.  You're welcome here regardless of what you decide to do.

 

Again, I apologize if I came on too strong.  I personally have suffered from a too fast taper for a long time and I hate to see it happen to anyone else.

[jonhra]

Thanks Jemima.  I'm cranky, fussy and overly warm (it's 102 outside and muggy).  At my age I shouldn't be so sensitive although I'm trying to work on it.  And your concern IS appreciated (even after the fact

 

Regards 

[jonhra]

My post on how I tapered off lamotrigine and Celexa caused a lot of unhappiness both on my end and from the forum administrators.  I understand why.  There are soooo many safer ways to taper than to miss a dosage every other day.  I discovered that I could tolerate every other day tapering by accident.  I kept missing dosages during periods of overwhelming stress.  This was in spite of daily pill minders and daily reminders from my cell phone alarm clock.  A day (or 2) later I’d take a dose and was “happy again”. 

 

That said…please don’t follow my lead.  Jemima was right on the button when she dropped on top of me worried about my health and concerned about the rotten effects of my method.  For me…I’m ok.  For other people…fuggetaboudit.  It can be rotten and terrifying.  I’ve had people tell me that and I have no reason not to believe them.

 

I combed through the forum on tapering advice and tips.  Wow!  Please read them and remember that MY story is mine and isn’t a good one to use as an example, unless you want to think of it as a really poor example.  The only reason I told my tapering story is because I was asked to, NOT because I thought it was a good one for anyone to follow.

[Jemima]

Thanks for the clarification, Jonhra.

[Rhiannon]

Jonhra, I always appreciate when people share their stories, it's the only way I learn. Otherwise all I have to go on is my own experience with my own body, which is great for me, but everybody else isn't me (apparently, and what's up with that, right?)

 

We're only concerned about your taper, and I'm sure Jemima only mentioned the reinstatement option, because of how much suffering we've seen. You do not sound like someone who deserves to suffer. Generally the advice given here is "most conservative" because there is no way of telling what someone's experience is going to be, so conservative is safest.

 

But the absolute best and only expert and guru on your taper is you, because only you know your own symptoms and your own situation. We can tell you what we've seen with other people, what works, etc. 

 

At this point my concern for you is that withdrawal symptoms are often NOT their worst immediately after withdrawal, during the time when reinstatement is still likely to be successful. So often, over and over, I have seen people come here after a fairly short withdrawal and they're doing okay, but within a few months or maybe six months they're suffering greatly and desperate for help. You sound awesome and I really don't want that to happen to you.

 

So please be careful and if your symptoms ramp up, please consider reconsidering your decision about not reinstating. Generally people can reinstate to a small percentage of what they were taking and get some relief, stabilize, then taper off that last bit more slowly.  Almost everyone in your position has that same feeling, "I don't want to end up back where I started, after everything I've gone through to get here!" but a small reinstatement is often all it takes, not going back to the full dose.  

 

Just ideas to keep in mind, in the background, in the toolbox, in case you need them.

 

I strongly hope your situation remains tolerable and manageable.  I'm rooting for you to be one of the exceptions!