Camm63 20 + years on SSRI's

[Camm63]

I am a 53 year old woman with fibromyalgia, depression, anxiety and PTSD. I've been on SSRI's since I was 32 years old.

 

Over the years I've tried getting off SSRI's several times but was defeated mainly by the insomnia and anxiety. Nocturnal anxiety is a bear and a misery; and when I'm in the middle of it, it is very difficult for me to calm myself down and/or comfort myself.

 

I've taken several different SSRI meds, and also Wellbutrin and Effexor at different times but my last med was Lexapro. About 18 months ago I decided to try weaning off it once again. My psychiatrist cooperated by prescribing me the liquid form which made it easier to gradually lower the dose.

 

I lowered the dose very very gradually over nearly a year and took my last minute dose of Lexapro in May 2012. Since then I have noticed some minor symptoms but the big problem is the anxiety and sleep disturbance. Because of the fibromyalgia I rarely sleep well and over the summer I've had nearly continual problems with sleep. Sometimes I fall asleep right away, but wake up every hour or so with my heart pounding. Also, the anxiety over-activates my bladder so there's a run to the bathroom four or five times a night.

 

Yesterday I took a 1000 mg vit d capsule and last night was the worst night yet. I began having panic attacks as soon as I lay down to sleep and every time I started to drop off I would jolt awake again. Finally about 1 AM I dropped off for about an hour or so, but woke up every couple of hours until 7 AM when I finally gave up and got up.

 

Now of course I'm so anxious that I don't know how much of the anxiety is caused by the protracted w/d and how much is just me worrying. I'm very angry to be in this place again and really really want to stay off the meds.

 

This site looks very well run and informative and I have a feeling it's going to be a great comfort. thanks.

[peggy]

Hi Camm and welcome!

I am so sorry you are in this position yet again - i have been on for 13 years, going on 14 now, so I am not that far behind you!!!

How did you feel when you were tapering? Did you have anxiety at all or did it start after you were off completely? From what i can gather sometimes supplements can stimulate a sensitised nervous system.

[spectio]

Hi, Camm: congratulations for enduring the unendurable. That's a long time to be medicated, and you have been unbelievably brave in getting off these miserable poisons. You are in a good place! We all understand the trauma off getting off drugs.

 

I ended WD September of 2011 after twelve years of remeron (plus a few others along the way). I wish I cold tell you it is smooth sailing. It has been far from that. I also endure daily bouts of this nervousness, along with a.m. head pressure, daily dizzyness, and some days nausea. I can't remember the last day I truly felt good.

 

I'm trying not to be a downer for you. I truly believe we would be in far worse condition if we let our "love affair" with AD's to go on any longer.

 

I get your attempt at taking vitD. I don't know what it is about supplements, antibiotics, other meds, but we recoverers can hardly tolerate any of them. Unless you truly know you have a deficiency, stay clear of these substances. Others can counsel you better but if you have to take something, try a lot lower dose and work up to a therapeutic dose from there.

 

As far as my experience with supplements, our brains don't want, don't need them. Be VERY CAREFUL WITH SUPPLEMENTS!

 

Read through the forums and don't be afraid to bring up issues. We all try to help each other out if we can!!!

[Camm63]

Thanks peggy and spectio - I appreciate the support.

 

Peggy, I did fairly well on the taper as it was long and slow - I had brain zaps and minor sleep problems, some nausea and headaches.

 

In fact, I have to admit that in comparison to some of the stories on this site, I haven't had it bad at all. The insomnia does upset me, however and I tend to develop more anxiety in response to it. Then hypochondria kicks in and I start wondering if there might be 'something else' wrong with me and get myself all worked up.

 

The advice about supplements has been heard and absorbed, spectio... I'm not interested in another night like last night and if the vitamin d was the cause, it can sit on the shelf for a few more months.

[Barbarannamated]

Hi Camm. Glad you found your way here. Im sure you'll find the help to get you through the rough spots. I, too, didnt have a terrible time with the taper (Pristiq, last of many SS/NRIs for 18 years), but was hit with protracted withdrawal. I have other medical issues complicating my picture.

 

Someone else just had a similar bad reaction to Vitamin D. I will try to recall who that was.

 

Welcome to the group. Altostrata is the admin and will have good advice for your particular situation.

 

You mentioned your diagnoses. I'm curious if they all occurred at once or how that sequence went.

[Jemima]

You might want to take a look through this section in Symptoms and Self Care:

 

http://survivingantidepressants.org/index.php?/topic/555-tips-to-help-sleep-so-many-of-us-have-withdrawal-insomnia/

 

I had horrid insomnia and hyperactive, irritable mornings when I first came off of Lexapro. When I realized that it was all about elevated cortisol, I darkened my bedroom as much as possible, wore a sleep mask to bed, and then I was able to sleep. Once I was able to sleep, other withdrawal symptoms began to subside.

 

Welcome to the forum. This site has helped me a great deal, especially in early withdrawal.

[Camm63]

Hi Barbarannamated - great name by the way.

 

I've had fibromyalgia for several years - was diagnosed in 2009. That was one of the reasons I wanted to get off AD's - I had reason to believe the AD's exacerbated the painful muscle spasms that can happen with fibro. The muscle spasms HAVE gotten better overall, but I'm still experiencing the jumping twitching muscle reactions that go along with the AD w/d. I have an especially nice twitch over my right eye that is quite obvious and has enlivened many a conversation - people can't help but focus on it.

 

Since people with fibromyalgia tend to have sleep issues anyway, I guess it was inevitable that sleep disturbance would be my main problem getting off AD's. Have you found sleep to be a problem as well?

[Camm63]

Thanks Jemima - very interesting suggestions re. sleep, especially the ones about temperature. That makes sense because I'm always too warm.

[Altostrata]

Hello, Camm, welcome.

 

I see in your signature you have mild brain zaps. Have you had them since your last dose in May? Has your sleep been poor since then?

 

Yes, since withdrawal syndrome can include hypersensitivities, some people react badly to vitamins. Vitamin D is a prohormone that might increase the level of other hormones. Your body over-reacted to this change. Your symptoms will settle down over time but you'll have to baby the hypersensitivity.

[Camm63]

Thanks Alto - this all makes so much sense!! What a relief to find this site.

 

I don't understand why the medical community doesn't understand the hypersensitivity issue but just tries to load more drugs onto us. When I called my doctor for help his only suggestion was to try and prescribe me Wellbutrin (which he has been pushing me to take since I came off Lexapro) and Trazodone. That's just what I need - two new meds to throw into this mix of symptoms.

 

In answer to your question about brain zaps, I've had them since I first started weaning off Lexapro over a year ago. At first they were quite strong and I used them to judge when it was safe to lower my dose again.. when they stopped for a couple of weeks then I would once again lower the dose a bit. Since my last dose in May I've had them intermittently and they're mild - sometimes I don't have them for days.

 

By the way, in taking the advice of this community (dark cool bedroom, no supplements), I had the best night's sleep I've had in weeks last night. Thanks to you all.

[Skyler]

In answer to your question about brain zaps, I've had them since I first started weaning off Lexapro over a year ago. At first they were quite strong and I used them to judge when it was safe to lower my dose again.. when they stopped for a couple of weeks then I would once again lower the dose a bit. Since my last dose in May I've had them intermittently and they're mild - sometimes I don't have them for days.

 

Hi Cam, and welcome to the forum. Good folks, good place to be . What you describe above was 'listening to your body'. Our mantra here. You tapered by lowering your dose in steps. Perhaps you could have gone more slowly, but given what you knew.. the schedule you set up was wise and judicious. And now you have Alto as a guide.. ya did good!

 

~Schuyler

[Altostrata]

Thanks, Jemima, for posting that link to the sleep topic!

 

Good to hear the info helped your sleep, Camm.

 

It's also good to hear the zaps are less frequent.

 

Have you tried fish oil http://survivingantidepressants.org/index.php?/topic/36-omega-3-fatty-acids-fish-oil/ and magnesium http://survivingantidepressants.org/index.php?/topic/1300-magnesium-natures-calcium-channel-blocker/ ?

 

Those are two supplements that many people find helpful. Introduce one at a time, at a low dose.

[Camm63]

Hi Alto - I have tried fish oil and it kept me awake - I think I tried too high a dose. And believe it or not magnesium seems to make me wakeful as well. I've only tried mag oxide so am not sure about other forms. It takes very little to disrupt my sleep - sugar will do it too, and FORGET caffeine.

 

I am definitely a 'supplement junkie' and have tried many things in the past. However, I'm beginning to realize from this website that supplements need to be tried slowly and carefully and one at a time!

 

I think I'm going to wait a few weeks.. maybe a month, until I'm as sure as I can be that all effects from supplements I've been taking are out of my system.

 

Then I was thinking I'd try a tiny dose of a different form of magnesium to start out with. Call me over-cautious but after 20 years on AD's I think my system is in overdrive.

 

I am so grateful for this site.

[Altostrata]

That is not that odd because withdrawal syndrome hypersensitivity can cause paradoxical reactions.

 

Yes, try very low doses, and not at night at first.

[Camm63]

This will be a lengthy post so please excuse the time it takes to read.

 

I am about three months off lexapro and struggling with anxiety, insomnia and depression. I tapered off Lexapro over a period of about 18 months, but Lexapro was the last in a long line of AD's - I've been on AD's for more than 20 years.

 

I was doing fairly well until I took a 1000 mg Vitamin D several days ago and that night I had panic jolts as I tried to fall asleep. I did eventually get to sleep but it was fragmented and uneasy. I tend to obsess about sleep (it's always problematical for me) and this triggered a panic state with insomnia that continues.

 

I called my psychiatrist - he prescribed klonopin and trazodone. I wasn't too excited about starting new meds and adding their confusing side effects to the mix, so I did not start the trazodone. I have taken .5 klonopin the last three nights and it works with no side effects that I can tell, but I am aware of its tendency to cause rebound insomnia and depression, and I am also very aware of its addictive properties and the fact that I'll gradually need to increase the dose to keep it working. I don't want to keep taking it.

 

I have asked my psychiatrist two or three times about re-starting a small dose of the lexapro, but he keeps saying he doesn't want me to do that although he will not say why. I have an appointment with him on 8/21 at which I intend to get more answers but in the meantime I could use a few second opinions.

 

So my question is, what does anyone think about the possibility of reinstating the lexapro to try and get stabilized? When I stopped the drug I was on 0.125 mg. I'm thinking I'd start at that point and see if it helped after a couple of weeks.

 

thanks.

[Camm63]

I also wanted to say (and forgot) that because I have been on AD's so long, could it be possible that it will NOT be possible for me to ever come off of them? I haven't read any stories from folks who were on AD's that long and came off successfully. This will be the third time I've tried to get off AD's and it has been the worst by far. I'm thinking maybe I should just accept the fact that I will not be able to do it, and concentrate on using the lowest dose possible and trying to mitigate the damages these drugs cause in other ways.

[Shanti]

I have seen many success stories from people on these meds for many years. If it is too difficult, then you can slow down and take your time. If 10% reduction is too much then try 5%. If that's too much then do 2%. You may be on it for a long time but at least you are working towards coming off of it. Rhi wrote about this in the tapering forum.

[Nadia]

I lowered the dose very very gradually over nearly a year and took my last minute dose of Lexapro in May 2012. Since then I have noticed some minor symptoms but the big problem is the anxiety and sleep disturbance. Because of the fibromyalgia I rarely sleep well and over the summer I've had nearly continual problems with sleep. Sometimes I fall asleep right away, but wake up every hour or so with my heart pounding. Also, the anxiety over-activates my bladder so there's a run to the bathroom four or five times a night.

 

Hi Camm,

 

I was on ADs for about 16 years, and what you describe above is exactly what happens to me. The last two times I discontinued (one with a taper of a few months, the last time CT), I gradually developed sleeplessness and anxiety, really getting bad around the 3 month mark. I'm not sure how common that time frame is, but I've read at least two other people on here mention a similar time frame for developing anxiety and insomnia. When did the anxiety and sleeplessness start for you?

 

I just wanted to let you know that I have gradually improved (it is not linear progress, though). Right now I'm having a bad spell again of very light and fragmented sleep and strong AM anxiety, but just a month ago I slept normally for two full weeks, and much earlier than that I had periods of being able to sleep 6 to 7 hours with maybe one or two 8 hour nights in there. And in general the really bad nights of fragmented sleep diminished and soon I was sleeping 4 to 4 1/2 hours and then able to go back asleep for one more sleep cycle before the heart-pounding started. I think other people have had even quicker improvement. I think I had a bad crisis moment that made everything worse when I had been off of ADs for 8 months when a doctor prescribed an anti-amoeba medication for me. It really made my system go completely haywire (so yeah, take any supplement and medication with caution).

 

Thankfully for me, magnesium has not been a problem (I take magnesium chloride crystals diluted in water at night and when I wake up in the middle of the night) . But I do have paradoxical reactions to a lot of other stuff, valerian being a big one. And what can work one night can suddenly turn on me.

 

For example, for the first time I've taken diphenhydramine HCl in order to be able to sleep, and also doxylamine succinate. The first two times I tried the diphenhydramine, it seemed to help. Not with the anxiety, but in waking up less times during the night. But it also seems to make my anxiety worse, especially if I overdo it. I can only resort to it once in a while, and in a way it is like my body fights it. I took it again last night, for example, and had fear as I was falling asleep. I kept on feeling or thinking someone had sat on the bed and would wake up with a start. And my AM anxiety this morning was way worse.

 

The two weeks last month that I slept perfectly normally (I'm talking about 9 hours of sleep, and being able to go to sleep for another two hours!), I took zero supplements or medications of any kind.

 

Still, I look for all sorts of stuff to help out of desperation: valerian, linden tea, milk peptides, niacinamide, magnesium, seriphos, xanax, etc. I almost feel like I have to "trick" my nervous system into accepting them, like the fear response that's going on is so out of hand that it can react negatively to the smallest thing, ESPECIALLY if it feels like it's being "shut up". Sort of like if someone were trying to drug you against your will and you were fighting it, though it's a subconscious process.

 

Nadia

 

P.S. Have you ever wondered if perhaps your fibro was caused by the ADs? I started having strange back pain while still on zoloft/wellbutrin which got worse in withdrawal. It's a very particular kind of pain, and I think it's probably my muscles being in a continuous tenseness. Or it could be that I'm more alert to the pain when I'm feeling bad... but I'm constantly struck by many of the similarities between extended withdrawal and other conditions like fibromyalgia and chronic fatigue syndrome.

[Nadia]

It sounds like your last dose was really small, and if only 3 months have gone by, you might still have a chance to reinstate without problems. Did you have the brain zaps and problems immediately, or were you OK until just now?

[Altostrata]

Hi, Camm -- I moved your "reinstatement" posts here because they pertain to your particular situation. When you post questions in your topic here, you don't have to explain your history again.

 

It's possible a minute dose of Lexapro would help you, perhaps not any more than the .125mg at the end.

 

As I indicated before, that you've had brain zaps all along indicates the taper was always too fast for you. Possibly reinstating and stabilizing for a few months will make a difference, and allow the brain zaps to resolve.

 

Your psychiatrist probably doesn't take the smallness of your decrements or your complaints about withdrawal symptoms seriously. They tend to believe all withdrawal symptoms are minor and transitory.

 

Personally, I believe brain zaps are significant.

 

If you act quickly tonight (Friday) before 11:59 ET, you can get generic Lexapro tablets free here https://www.healthwarehouse.com/solr/result/?q=lexapro