Dire straits

[ALHmom]

Please, I need the input of anyone who has gone back on their SSRI.

Our son, at 9 months off, cannot function because of the overwhelming anxiety, panic, and confusion which escalate into uncontrollable rages. He has horrible repeating bad thoughts and songs and akathesia and is desperate enough to want to go back on...what? Celexa was the most recent taper (we are convinced he had pooped out 2 years ago – so that’s probably out of the question - when he was put on Effexor, which turned him into a violent, desperate person and was followed by a 5 month wean).

We have started working with a counsellor to control this anxiety, but at this point I don’t know if anything short of Valium can get on top of this. He adamantly refuses to take it, fearing addiction. It was the only weapon we had.

He cannot live like this. He never has a moment’s peace.

I know 9 months has been rough for others, too, but resolution of his symptoms – every one on the withdrawal list – have been barely discernible after all this time. He cannot stand the thought of facing another day.

Going back on is the absolute last thing any of us wants to do.

I really need to hear from you.

Thanks.

[Laney]

Hi there,

O.K. If it were me or my son, I would absolutely try something. Have you tried all the natural stuff like vitamins, herbs, acupuncture? Have you checked out the section for "Methods of Wellbeing" I think that's what it says. Anyway, if I had tried what I could try and nothing helped, then I would absolutely try another medication. That's me though. I'm not saying that you should only that I would. You guys have suffered so long that you need relief in some way. With that said, you need to do what you think is best and that will provide some quality of life for your son.

My heart goes out to you and your in my prayers!

Laney

[LCrawford67]

I agree, you have to do what's best for your son. But, the problem I see is he's been on several SSRIs and appears to be suffering so badly from both the side effects and w/d of each one.

That doesn't include what he's probably going through because of the benzos that have been thrown in there as well.

There's just no easy answer here, but because these drugs are the reason he's in the state he's in, I would just exhaust all other options before putting another one into his body.

Again, this is something where you have to do what's best for your son. I don't think there's any easy answers.

[leo79]

I very much relate to this situation. After quitting Celexa last year after a bad reaction to it, my life has been living hell... Extreme anxiety, severe depression, depersonalisation/derealisation, OCD, constant suicidal thoughts, music in my head etc. I barely know how I made it through to this point. I honestly didn't know how I was going to survive each day - I suppose I just existed through it.
As you can see from my signature I went back on Prozac after month 2 but I can't imagine things being worse than they were and so I had to taper off prozac. I am by no means well, each day is still some version of hell but things have improved a small amount but like you say it is barely discernable. I too am tempted to try and take something else just so I can have some semblance of a life without being in constant agony. If I took something it would probably be a mood stabiliser like Depakote or Lamictal or low dose of seroquel or something like that just to shut my brain down a bit. Of course there will be people who say that these drugs are all bad and that they made them feel like crap etc. but you have to weigh up the pros and cons here. I would be on another SSRI in a flash if I thought it would help but I fear worse than this, infact I've seen places worse than this that I occasionally slip into that I fear a drug could take me to. If you try anything make sure to start with low doses.
Supplements wise.. have you tried him on anything? None of them even touched any of my symptoms apart from Niacinamide that calmed the insane anxiety. At least 500mg I have to take. I also hear good things about Taurine, but I basically think that these kind of symptoms at this level don't respond to supplements. Investigate this but be careful also.
Other than that some deep relaxation cds he can listen to would help to calm his CNS. I have this one 30 minute hypnosis/deep relaxation recording that I listen to which helps. It's hard though at first, I was panicking just listening to it at times and was even paranoid if it was making me worse, but really when I got into doing it I could see the benefits.
What kind of routine does he have at the moment? My routine is non existent but of course it helps to have some distractions no matter how hard they are to focus on. Try anything... painting, walking, reading, etc.

Anyway, I hope your soon starts to feel better soon

[angelwings]

I understand your desperation. It is torture to see your kid hurting like that. The problem is that drugs don't help. Or they help a little, and then hurt a lot.

I want to suggest something that might really shock you.

It sucks to be a kid. Schools are places that require you to sit where you're told, move from room to room at the sound of a bell, ask permission to go pee, accept snotty, degrading comments from authority figures, and tolerate torture and pressure from hoards of other kids. You can't follow your dreams, because you're told what to do, work on and think about all the time. You don't even know what your dreams are anymore.

As a teen, the only thing you really care about is your friends and your social standing, but adults think those things don't matter. Your emotions are strong, and you are supposed to act like you aren't feeling anything.

And because of all of this, you need drugs to keep your sanity and get along.

(Boy, I'm really going out on a limb. Keep in mind that this wild rant is offered with love.)

I want to suggest that you get hold of the Teenage Liberation Handbook. Better yet, get two copies, so you can both read it at once. Read it, and step back and relax all the many pressures on the kid.

Then check out ways to learn to sit with feelings, like zen buddhism or Heart of Now. It is possible to learn that no matter how horrible the feelings, they will not kill you, and they will pass.

Maybe none of this applies... but if some of it does, I hope it helps. You'll be in my thoughts.

[angelwings]

P.S. Maybe a hot tub? They are awesome for my anxiety.

[LCrawford67]

Originally Posted by angelwings

It sucks to be a kid. Schools are places that require you to sit where you're told, move from room to room at the sound of a bell, ask permission to go pee, accept snotty, degrading comments from authority figures, and tolerate torture and pressure from hoards of other kids. You can't follow your dreams, because you're told what to do, work on and think about all the time. You don't even know what your dreams are anymore.

As a teen, the only thing you really care about is your friends and your social standing, but adults think those things don't matter. Your emotions are strong, and you are supposed to act like you aren't feeling anything.

And because of all of this, you need drugs to keep your sanity and get along.

(Boy, I'm really going out on a limb. Keep in mind that this wild rant is offered with love.)

I want to suggest that you get hold of the Teenage Liberation Handbook. Better yet, get two copies, so you can both read it at once. Read it, and step back and relax all the many pressures on the kid.

Just to clarify...ALH's son isn't a teenager, he's 25.

[angelwings]

Ok, I stand corrected, sort-of. But on the other hand, we live in boxes, and unless he's been to college, and finished and started a wonderful career, he's still probably affected.

Call me crazy, but I'd still read the book.

[lov4k9s]

ALHMom~

I was in a HORRIBLE state for 10 months straight. I suffered from akathasia, anxiety, crushing depression, impaired cognitive abilities, "agoraphobia", depersonalization, irritability, marathon crying jags, SEVERE insomnia, suicide ideation, and the list goes on. I liken my first 12 months to what I imagine a horrific acid trip would be like......utter horror! I honestly felt like I was being tortured 24/7 and wanted to die every single minute of every single day.

I started getting tiny windows around the 10th month. Around month 12 most of my symptoms started to water down and by the end of month 13 all of my symptoms were downgraded from severe to mild/moderate. I had my very last crying jag on July 1st (I cried every single day for 13 months!) and while I'm still in a very uncomfortable state, I have started to join the living again. I am now working out at the gym, I'm running errands again, I'm starting to take on more responsibility at work, and I actually went boating and water skiing this past weekend (my first recreational activity that I actually enjoyed somewhat). I could not have done any of this just a couple of months ago.

As you can see from my signature, I have a lot healing to do and I still occassionally come here to rant because I continue to feel ill and I haven't regained my ability to enjoy life like I'm accostomed to, but I really am in a much better place than I was at month 9. SO MUCH BETTER!!! There is NO comparison. I said earlier that my first 12 months was like living in a horrible nightmare akin to an acid trip gone terribly wrong, I would liken my post 12 month period as living with a terrible hang over with lingering symptoms.

I am so very glad that I researched all of the available drugs and came to the conclusion that they were all poison and that my only choice was to tough it out. I don't know how long it is going to take, but I honestly believe that I am going to have a full recovery. I've spent HOURS In the PaxilProgress archives and I've witnessed many who suffered like your son that eventually found some peace and went on to full recovery. I would label my experience as being in the "worst" category, and if I can see the light without drugs then I believe your son can too.

lov

[Amaya's Nana]

Originally Posted by Lov4k9's

ALHMom~

I was in a HORRIBLE state for 10 months straight. I suffered from akathasia, anxiety, crushing depression, impaired cognitive abilities, "agoraphobia", depersonalization, irritability, marathon crying jags, SEVERE insomnia, suicide ideation, and the list goes on. I liken my first 12 months to what I imagine a horrific acid trip would be like......the horror was unimaginable. I honestly felt like I was being tortured 24/7 and wanted to die every single minute of every single day.

I started getting tiny windows around the 10th month. Around month 12 most of my symptoms started to water down and by the end of month 13 all of my symptoms were downgraded from severe to mild/moderate. I had my very last crying jag on July 1st (and I cried every single day for 13 months!) and while I'm still in a very uncomfortable state, I have started to join the living again. I am now working out at the gym, I'm running errands again, I'm starting to take on more responsibility at work, and I actually went boating and water skiing this past weekend (my first recreational activity that I actually enjoyed somewhat). I could not have done any of this just a couple of months ago.

As you can see from my signature, I still have a lot healing to do and I still occassionally come here to rant because I still feel ill and I haven't regained my ability to enjoy life like I'm accostomed to, but I really am in a much better place than I was at month 9. SO MUCH BETTER!!! There is NO comparison. I said earlier that I my first 12 months was like living in a horrible nightmare akin to an acid trip gone terribly wrong, I would liken my post 12 month period as living with a terrible hang over with lingering symptoms.

I am so very glad that I researched all of the available drugs and came to the conclusion that they were all poison and that my only choice was to tough it out. I don't know how long it is going to take, but I honestly believe that I am going to have a full recovery. I've spent HOURS In the PaxilProgress archives and I've witnessed many who suffered like your son that eventually found some peace and went on to full recovery. I would categorize my experience as being in the "worst" category, and if I can see the light without drugs then I believe your son can too.
lov

This post just brought me to tears!!!! Love you girl.

[scotty]

ALH....it's so hard to go through this. I know where you are having been there with Ryan. It feels like it will never end and only gets worse. The key point to think about is what started the ssri use...and what, if anything, positive came from their use.
You're son has been on extremely high doses of many drugs from what I can remember about his story, there was never anything positive about the effects any one of them.
The option to go back on something is always there, but at 9 months off I would hang on tight and see how things go. This is the time period when the light at the end of the tunnel starts to appear.

[tonys]

ALHmom,

My prayers are with you. It does get better with time. Anxiety, as I'm sure you're aware, is transient in nature. There are psychiatrists and neurologists that specialize in helping people come off these drugs.

Is he taking any supplements?

I'm not a health professional, but fish oil (therapeutic dosages) and magnesium do help with some of the issues. They aren't magic bullets, but he should see an improvement over 3 weeks to a month.

I would also look into finding a therapist that specializes in CBT.

[ALHmom]

I am reading your responses, on the verge of tears, for your unselfish and genuine support. I am in complete awe at your strength, will and grit to push through each day.

We know in our hearts that going back on is not the answer. But when our son’s anxiety escalates to panic and he loses his remaining sensibility, going back on, in his mind, seems the most obvious next best move to escape his horror. He never felt this bad on the drug, therefore go back on. In his calmer states, he knows better, but when there’s no other option out there, he reverts to anything that might remotely offer solace, forgetting every downside the SSRIs subjected him to over the years.

Two weeks ago, we started counselling in search of tools to help with the overwhelming anxiety. (Until about 6 weeks ago, he was too sick to leave the house). After the initial appointment, our counselor, who admitted that he knew nothing about protracted SSRI withdrawal, said he would do some research, talk to our pdoc and run this by his brother who is a neuropsychiatrist with 30 years experience. I was amazed when, at our second appt. last week, he had actually followed through all of the above and had a plan. His brother said that he had never heard of this type of extensive withdrawal; he recommended neuropsych testing and brain imaging. With complete confidence, we said ‘no.’ Time is what this needs, and help to deal with the symptoms, esp. anxiety, in the meantime. Much to his credit, our counselor reconsidered, agreed, shifted course and refocused on tecniques to not only reduce anxiety (and hopefully avoid the dreaded and destructive panic/rage attacks), but also accept circumstances and visualize healing. Leo79, we will be asking our counselor for relaxation CD recommendations and would welcome yours. We plan to try acupuncture next week and have talked Chinese herbs, but will first have to know everything possible about any chemical that goes into our son’s mouth. (These days, it takes a lot more to gain our trust).

We may just be buying time, but I like to think that we're learning some things along the way. We are not convinced that our son is on board with all of this yet, but we parents are and it has helped us significantly to have someone else engaged and committed to bringing health back to our lives – that image of adding that third leg to a stool comes to mind.

Interestingly, when we called our pdoc to let him know that we were involving another person in our son’s care, he was very alarmed and concerned about the potential for harm. Turf issue, perhaps? At any rate, the two professionals did confer for about 20 minutes, and seem to have a working relationship. Coming at this from 2 different camps can’t hurt – maybe everyone will end up better educated.

Angelwings, our son did complete 3 years of University, dazed, flat and asleep. He could not go on after his junior year. If we counted the losses over the past 12+ years under the influence of SSRIs, there is not enough room in all of cyberspace to hold them.

So, we stay the course, one day at a time, read pp and thank you heroes every day for empowering us and giving us hope and guidance.

[scotty]

Originally Posted by ALHmom

Interestingly, when we called our pdoc to let him know that we were involving another person in our son’s care, he was very alarmed and concerned about the potential for harm. Turf issue, perhaps? At any rate, the two professionals did confer for about 20 minutes, and seem to have a working relationship. Coming at this from 2 different camps can’t hurt – maybe everyone will end up better educated.

You guys are a great team! The turf issue..Oh yeah, dealt with that when we added a psychologist to Ryan's team. They went pretty head to head on the drug cause, but his psychologist held his ground about Ryan's situation at the time not being "him", but paxil. This was when we started hearing less and less from the psychiatrist..and then he bailed completely after all h*ll broke loose. His psychologist was there for the long haul.

[eileen]

I'm so sorry that your son is suffering so much. We are all familiar with much of it here and rage is one big symptom that most of us had or still do have.
Walking used to help me and of course typing it all out, even if I tore it up. Know that it will get better with time. It's hard to understand that when one is suffering so much.
I like that he is now able to go out of the house to see his councillor. That is a large improvement.
Eileen

[leo79]

Having anxiety at this high a level is probably one of the hardest challenges a human being can face. Quickly you start to learn that "fighting" and doing something about it does not help. Infact any attempts that to try and engage with it then just end up being part of the anxiety game and you just end up going in circles as you can not force this away with effort and force in the true sense... depression maybe, but not severe anxiety. This is why I believe that certain approaches will not help at all. For instance I don't believe a single person ever got better from severe anxiety via any CBT type therapy, at least not the cognitive side. CBT will say to write down any "thinking distortions" or anxious thoughts that you have and then rate them on a scale of 1 to 10 and then the therapist will point out that these thoughts are irrational and will tell you a more rational thought. This approach is ok if you are having a few thoughts each day that are causing you distress, and you don't realise that they are irrational thoughts. If however, your entire experience every day for many months is consumed with all aspects of severe anxiety to the point whereby you perhaps have a thousand suicidal ( or some other unwanted ) thoughts a day, then you have to develop methods of a different nature. Basically, to get to the point, the only **** I think that works is mindfulness and detachment. Relaxation and meditation will help calm the nervous system but you then have to have strategies outside of the relaxation sessions, and I believe it is essentially about detaching from the anxiety symptoms and letting them be. In doing so you then avoid the situation of adding addtional anxiety and panic to the symptoms. This secondary anxiety can often be as bad if not worse. Don't get me wrong, this is difficult and changes will not happen instantly but I think the fighting just makes it worse. You basically give up control... because anxiety is all about control. I hope I made some kind of sense.