22 replies to this topic

[Ramona80]

How long can this go? In the hospital, they told me it could go as long as 2-3 years. I was reading scary stuff on the Surviving Antidepressants site from people thinking they were still having waves longer than that, like 5+ years out (from other antidepressant withdrawal).(Really??)

 

I am just about 9 months off Cymbalta now, and tinnitus keeps worsening. I keep getting new sounds. I am very scared about this...I don't know how long this will keep getting worse. Someone else on the SA site said she just kept getting worse withdrawal symptoms the farther out she got, up till about 18 months.

 

I had a few weeks where things were calmer, my muscle spasms were hardly happening, and then bam, the past month has been increasing tinnitus and worse muscle spasms. Can a wave really last this long?

 

I wish someone could just tell me this would all go away tomorrow, but I know that's not gonna happen. I also know everyone is different, and people's circumstances are different and it's impossible to say how long each person's withdrawal will go. I just want to know what's typical.

[gail]

Hi Ramona,

I wish that could tell you that it'll be over tomorrow!

I can think of four members at least that went through one year and more of hard times. Good days in between of course. Wax and wane all along.

You have come from so far Ramona. Besides the music and the spasms, how is the depression and anxiety?

I am sure that Fivenotions will come along today and post here.

[Ramona80]

Thanks Gail. Depression not too bad. Anxiety happens when tinnitus worsens. Have PTSD from all that's happened. Scared that new noises keep showing up, not sure why this is still happening. That keeps me scared. Never know what's going to happen next. Don't want to wind up in the hospital again, don't want any of the bad things that have happened to me to return or worsen. I have about 8 different tinnitus sounds now, and I don't want any more.

[fishinghat]

Gail is right. At least 4 members. A wave can last a month or more in the early stages but is unusual (but does happen) at your point. And yes some are left with residual effects even 2 or 3 years afterward but they are usually minimal. At this point I would seriously consider that you are suffering from PAWS (Don't let the name scare you) and would recommend a low dose of Zoloft, Prozac or Lexapro. PAWS is a term for protracted withdrawal. If you were still slowly improving I would say hang in there but at this point I am not sure. It takes several weeks to kick in so just a small dose and wait a few weeks before you decide if it is enough. So many jump on a full dose and then fight with the withdrawal from that later. You want just enough to take the edge off and get through the rest of the withdrawal. After that you can wean off the new AD. This info is from a couple sources.

Post Acute Withdrawal Syndrome:

Causes, Symptoms, Treatment
(Also Called Protracted Withdrawal)
Individuals that have used any potent drug, particularly for a long-term and/or at high doses are known to experience significant short-term withdrawal symptoms. These symptoms may include things like dizziness, headaches, nausea, and vomiting. Over time, they usually lessen in severity as the nervous system and physiology adjusts to function without the presence of the drug.
Unfortunately, for many people the withdrawal period is not limited to a short-term. After the first couple weeks of discontinuation, individuals may find that their symptoms fail to lessen in severity for weeks, months, or in rare cases – years beyond when they were told they should be fully recovered from withdrawal. To add to their frustration, many medical professionals either fail to inform their patients or completely dismiss the possibility of protracted withdrawals.
This adds to the patient’s anxiety and often leads them to perceive that something more serious is wrong (e.g. a brain tumor) when their dizziness persists for months. Although it is important to always get a medical and neurological screening to rule out the possibility of something more serious, if symptoms emerge upon discontinuation from a drug – they are usually a result of withdrawal.
What is post-acute withdrawal syndrome (PAWS)?
Post-acute withdrawal syndrome (PAWS) refers to withdrawal symptoms that persist for an extended duration following drug discontinuation. Post-acute withdrawals are most commonly referenced among individuals discontinuing opioids. This is due to the fact that during opiate withdrawal, individuals often endure intense short-term symptoms and think that their withdrawals will be over after they “weather the storm.”
In many cases, the short-term symptoms lessen, but never seem to go away. In some cases, new symptoms may emerge and a person experiences long-term functional impairment. This long-term impairment may last for weeks, but often persists for months – and in some cases years – beyond the expected date of recovery.
The condition is not limited to those discontinuing opioids, it commonly occurs among those discontinuing alcohol, benzodiazepines, antidepressants, antipsychotics, and other psychoactive drugs. Although “post-acute withdrawal syndrome” is not recognized by the Diagnostic Statistical Manual of Mental Disorders (DSM) or by any medical associations, to deny or dismiss its existence is short-sighted.
⦁ https://www.ncbi.nlm.../pubmed/8097618
⦁ http://addictionsand...-withdrawal.htm
⦁ http://addictions.ab...ndrome-Paws.htm
⦁ http://www.arctreatm...rawal-symptoms/
⦁ And many many more.

Post-acute-withdrawal syndrome
From Wikipedia, the free encyclopedia
Post-acute-withdrawal syndrome (PAWS), or the terms post-withdrawal syndrome, protracted withdrawal syndrome, prolonged withdrawal syndromes describe a set of persistent impairments that occur after withdrawal from alcohol, opiates, benzodiazepines, antidepressants and other substances.[1][2][3][4] Infants born to mothers who used substances of dependence during pregnancy may also experience a post-acute withdrawal syndrome.[5][6] While post-acute withdrawal syndrome has been reported by those in the recovery community, there have been few scientific studies supporting its existence.[7] Because of this, the disorder is not recognized by the Diagnostic and Statistical Manual of Mental Disorders[8] or major medical associations.
Drug abuse, including alcohol and prescription drugs, can induce symptomatology which resembles mental illness. This can occur both in the intoxicated state and during the withdrawal state. In some cases these substance-induced psychiatric disorders can persist long after detoxification, such as prolonged psychosis or depression after amphetamine or cocaine abuse. A protracted withdrawal syndrome can also occur with symptoms persisting for months after cessation of use. Benzodiazepines are the most notable drug for inducing prolonged withdrawal effects with symptoms sometimes persisting for years after cessation of use. Severe anxiety and depression are commonly induced by sustained alcohol abuse which in most cases abates with prolonged abstinence. Even moderate alcohol sustained use may increase anxiety and depression levels in some individuals. In most cases these drug-induced psychiatric disorders fade away with prolonged abstinence.[9]

[Ramona80]

Thanks, FH. I am on a low dose of Lexapro, have been for 8 months. (The therapeutic dose is 10mg, but I am on 7.5mg.) This has helped me a great deal. I have the option of increasing my dose to 10mg, but I'm afraid to, as when a previous doctor had me increase Cymbalta, everything got so much worse.

 

Also, I don't know whether to attribute the tinnitus to Cymbalta withdrawals, or to the Lexapro (tinnitus began a few weeks after starting the Lexapro.)

 

Just doesn't make sense to me why the tinnitus keeps worsening. Unless that's due to PAWS symptoms worsening.

 

I *thought* I was improving...at least with the muscle spasms. They were lessening for a good couple of months or so, much less. Then suddenly they're worse again.

[fishinghat]

The FDA says that 0.85% of people on Lexapro report tinnitus as a side effect. That is low (but not impossible). And you are right, it could still be Cymbalta withdrawal BUT I would think it would at least stabilize by now. As far as the swings are concerned, not shocked, disappointed at this stage of the game.

 

1) you could up your Lexapro to 10 mg and see if the tinnitus gets worse

2) Lower the Lexapro to 5 mg and see if it gets better,

3) Change to something like Zoloft and see if it goes away or just hold strong and see if you can survive.

 

Like you, it is interesting to note that it started just after starting the Lexapro. Some coincidence.

[Ramona80]

Yes, have searched and searched but have not been able to find any info about an antidepressant causing tinnitus that keeps increasing (in types of sounds) over time. Have found many instances online of people getting tinnitus (1 sound) after starting one (a high pitched ringing, basically), but not this business of continuing to get new sounds.

 

I tried lowering the Lexapro to 5mg a couple of months ago. The one day I took the smaller dose, I got "wormy" feelings in my lower leg muscles, the way I had before starting Lexapro. Small, frequent spasms. Then I couldn't get sleepy that night, and had myoclonic jerks several times. Went right back to 7.5mg and those things went away.

 

So I could try going up to 10mg, but I'm scared. If the tinnitus got worse, it might take a few weeks till that happens, and 1) by then, I might be used to the higher dose, and would get bad effects from going back down and 2) by then the tinnitus might stay. Lots of people have reported getting tinnitus by going on an AD or going up in dose, and even after coming down, the tinnitus stayed.

 

If I don't make any medication changes, will things eventually improve? As far as PAWS goes?

[FiveNotions]

Hi Ramona, I'm so sorry you're still having problems, but yes, it can go on for a long time ... 

 

You're not alone in the tinnitus problem ... I attribute my own tinnitus to crapalta ... started up when I started the poison ... and only got worse during withdrawal .. I had one brief break  from it, about 4 months into cold turkey withdrawal ... went about a week without it, and I was astounded ... I could hear clocks ticking, birds singing, all of life's wonderful sounds ...

 

Then, it arrived back, and has stayed with me ... it's constant now, in varying degrees ... high pitched sound, or a lower hum ... and so loud that I no longer hear clocks, birds, crickets, or even some conversation ... I've just accepted it, and no longer pay any attention to it ... but, if I choose to pay attention, like now (reading your post focused me on it), I realize that it's really loud ... it almost drowns out the sound of my (very loud and old) a/c unit ...

 

Unfortunately, there's no cure for tinnitus that I've been able to find ... CBT is often recommended, to help folks learn not to focus on it / obsess about it ... but I haven't bothered with it, cuz I seem to have adjusted to it on my own ...

 

As for the muscle spasms, I had those, in varying degrees, for about a year ... they've now disappeared ...

 

Have you tried Epsom Salts hot soaks? That did wonders for me, along with the chelated magnesium ...

 

I think perhaps you're expecting far too much of your brain / body ... this process is of recovery, like AA ... but often, we never fully recover ... we never achieve that "perfectly well" state of life that we dream of ... which is where acceptance comes in ... and a good solid dose of "the hell with it" ... and just giving ourself permission to get on with life in the best way we can ... 

 

You've done wonderfully this far !!  ... just keep living forward ... stop fighting the tinnitus, the muscle spasms ... the more we battle with ourselves, the symptoms, the more power over us and our well-being we give them ...

[Ramona80]

Well said, FiveNotions.

 

I think the part that has me scared is when new things continue to show up at this stage of it. I sure don't expect it all to be gone at this point, but to be still getting new sounds in my ears this far out has been alarming. I don't want to get noises so bad that I can't sleep. The PTSD that I'm in is largely due to when I could barely sleep at all due to the myoclonic jerks.

 

I haven't tried Epsom salts because they raise your magnesium level, and my magnesium's already high which i know from my blood work. I do go to a massage therapist, though.

[FiveNotions]

hehehe ... yep, the noises in my head keep me awake at night sometimes, too ... I deal with that by choosing to listen to them ... like I would the radio ... I pick out which of the sounds (often I have high and low pitch, hissing, humming, and whirring all at the same time) I find most pleasing ... and somehow that helps me drift off to sleep ...

 

Definitely stay away from the magnesium !

 

Have you tried a heating pad? I wore out 2 of them during the first year ... 

 

I wouldn't be quite as afraid of increasing the Lexipro ... it isn't anywhere near as strong / dangerous as the Cymbalta ... but I defer to FH on all the dosing info and suggestions ... it does occur to me that at your current "sub clinical" level, you might just be keeping yourself at the level where you get side effects, but not the full therapeutic effect ... 

[FiveNotions]

I just found this discussion of Lexapro on a tinnitus support forum ...

 

https://www.tinnitus...nd-advice.1051/

[FiveNotions]

And this tinnitus / Lexipro thread on a depression forum ...

 

http://www.depressio...ain-on-lexapro/

[FiveNotions]

Selective Serotonin Reuptake Inhibitors (SSRIs) and the Permanence of Their Side Effects

http://hearinglosshe...r-side-effects/

[Ramona80]

Thanks for the links.

 

I have a heating pad, yes, has helped a lot.

 

Some people had worsening tinnitus upon taking a higher dose of Lexapro, which is my reservation in going up in dose. I have to think about this...

 

Along with the tinnitus that happened a few weeks after starting Lexapro, was worsened allergies and hypersensitivity in my airways. It's been this big question: Is the tinnitus due to that & eustachian tube issues? Is it due to the muscle spasms I'm having? (There are tiny muscles in middle ear, such as the tensor tympani which attaches to the eardrum.) Is it due to overactivity in nerves or auditory center of brain, pertaining to either the Cymbalta or the Lexapro? I just don't know & I don't even think there's a way to determine what it is.

 

I've also wondered if my messed-up, unstable nervous system from withdrawals is affecting how my body deals with the Lexapro.

[FiveNotions]

I think your last sentence likely sums everything up ... you're fragile from what you've already been through ... and now you've added a new med ... which impacts your already fragile system ... all the more reason to go as slow as possible on all changes ... and to allow yourself unlimited time to continuing adjusting / normalizing ...

 

for example, I'm 2 years 4-5 months off the crapalta ... and almost 4 months off of Wellbutrin ... first time in over 20 years that I'm not taking any antidepressants, anti-anxiety meds, or sleeping pills ... I have sleep problems, tinnitus, low-level anxiety, acid reflux, and bouts of very low energy ... I have zero clue what my "normal" is  .... not that I was ever "normal"  

[fishinghat]

Normally people with anxiety have low or nearly low magnesium and/or calcium. Yours being high explains the jerks (not the male kind) and spasms as too high a magnesium level will cause a buildup in the muscles and initiate involuntary contractions. Are you on a low magnesium diet?

[Ramona80]

Well, I misspoke. I'm in the normal range for magnesium, but on the high end of that. Like at the top. But still in normal range. But because of that, I don't supplement with extra magnesium.

 

On the Surviving Antidepressants site, I was told that new, delayed withdrawal symptoms can continue to appear up to 18 months after getting off the medication. I definitely have had delayed withdrawal symptoms. About 4 months after stopping, I got eyelid spasms. They happened a lot in the winter, all four of my eyelids. Now they're much less, and tend to happen only on my upper left eyelid. Things just keep changing. Most of my muscle spasms have been in my lower body, plus sometimes back. Then this past week, out of the blue I was getting spasms in my arms! Big spasms, like I could feel my arm shuddering. Gradually has been fading away this week.

 

There is variation in my tinnitus sounds, as well. Sometimes it goes very quiet. Sometimes certain sounds are not there. It's just all in flux right now.

[fishinghat]

Ah, I understand. No magnesium or Epsom salts for you Ramona.

 

You are right. I have really looked hard for any research on how withdrawal causes tinnitus and on worsening (variations in sound) but have had no success at all.

[Ramona80]

Thank you for looking, FH.

 

For what it's worth, my psychiatrist doesn't think the tinnitus would be due to the Lexapro because of the changing nature of it. Staying on a level dose, she said you wouldn't see the variation I've had.

But then, there are things that happen that are outside the realm of what doctors know, I think we can all attest to that, having gone through the Cymbalta weirdness.

[fishinghat]

Ramona

 

I did post that long document on all the tinnitus research I did didn't I? If not I can post it again. Just let me know.

[Ramona80]

You did, and thank you again.

[Ramona80]

Want to add one more thing...the way they put it in the hospital, my nervous system is dealing with "layers" of what happened to it. Because first I had withdrawals from being partially withdrawal from Cymbalta, then they raised my dose too high and I experienced what they called an "intolerance." It was at that point that all the muscle spasms began and my hair started falling out, among other things. Then I gradually withdrew from Cymbalta, and experienced more withdrawal symptoms when coming off. My nervous system's been yanked in too many directions. My therapist keeps telling me to make the most of each day and have hope that I'll heal.

[FiveNotions]

Wow, Ramona ... you've really been put through the proverbial wringer, haven't you ? !  

 

Sounds like you've got a good therapist ... words of wisdom ... make the most of each day ... and yes, hope .... always have hope ... healing takes time, faith, hope, patience ... give all those to yourself in huge measure ... the improvements may be tiny, incremental, yet they add up and expand ... one by one you'll find those "layers" dissolving, lifting off of you ... 

 

you're an inspiration to me, and all of us, for sure ! I'm so glad you're here !