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Meds, Mind, Body & Benefits => Mental Health & HIV => Topic started by: wtfimpoz on October 29, 2010, 04:44:31 pm

Title: uncontrollable bouts of sobbing
Post by: wtfimpoz on October 29, 2010, 04:44:31 pm
1)  Do antidepressants effectively treat sustiva related crying and obsession?
2)  Can anyone suggest any cognitive exercises that would be particularly effective in dealing with this?
Title: Re: uncontrollable bouts of sobbing
Post by: Miss Philicia on October 30, 2010, 09:20:00 am
I'm not sure where to start with this thread -- first of all, can we rule out that any of this anxiety/crying/obsession predates your commencing treatment on 9/6/10 with Atripla?  You may reply that you can rule it out, but your posting history may lend me in another direction (and no, I'm not saying that to be mean so let's not go there).  However, I would believe that this issue has been exasperated by commencing treatment with Atripla, the question would be one of severity.  Personally if I had any of these issues before starting treatment as a naive patient I would have selected a different regimen, and also I would have expected my doctor to have screened the patient for this issue, but from reading this forum for several years I don't believe that's widely done.

So the option here is why stay on this regimen if it's causing all of this?  If you do not wish to switch to another regimen (which is what I would do) then yes you can try taking antidepressants, and you'll most likely get an SSRI class med like Wellbutrin.  IMO Wellbutrin is least likely to effect your libido.  But is the issue depression or anxiety -- many shrinks will just throw an SSRI at you and expect that to solve both issues, but they are separate diagnosis really and often the anxiety issue, if quite bad, is better solved with the use of a benzodiazepine class medication like klonopin, etc.  This class of medication is addictive however so many doctors will shy away from prescribing it -- it's a Schedule IV controlled substance.  When I had overwhelming anxiety issues a decade ago klonopin was a godsend and instantly controlled the problem.  Withdrawing from regular daily use of something like klonopin must be done under supervision, slowly tapering, and can be a particularly horrific process for many patients, so keep that in mind.

Popping pills for these issues is only a band aid though -- you should supplement their use with one-on-one cognitive behavioral therapy with a mental health professional, but many people skip this routine because of either co-pay costs, bad mental health rider on their private insurance, or more likely intense mortification of sitting for an hour once a week having your brain picked by someone you don't know.  I will say that when I first was prescribed klonopin I also did weekly therapy sessions by an excellent (gay) psychiatrist and if I'd just popped pills without the therapy I don't believe I would have progressed out of that issue as quickly.

But back to to my first point -- why go down this complicated road if sustiva is causing the issue, unless of course you think that's only part of the problem and these issues were present, if on a lower level, before taking Atripla.  There are too many treatment options out there for HIV to not consider just switching out the sustiva.
Title: Re: uncontrollable bouts of sobbing
Post by: WillyWump on October 30, 2010, 11:34:13 am
Agree with MissP about moving away from the Atripla if the crying just commenced with the starting of Atripla. If the sobbing existed pre-Atripla then perhaps maybe an anti-depressant is in order, in conjuction with some therapy . Either way I would move off Atripla due to it's CNS effects.

-Will
Title: Re: uncontrollable bouts of sobbing
Post by: skeebo1969 on October 30, 2010, 12:02:30 pm
1)  Do antidepressants effectively treat sustiva related crying and obsession?
2)  Can anyone suggest any cognitive exercises that would be particularly effective in dealing with this?

I ignored Atripla induced depression for two years.  I tried antidepressants with it and, in my case, they did not work.  I became suicidal at one point and this is about the time I stopped the medication.  It took me about 6 months to feel normal again. 

I'll be honest I thought it was something I could overcome, thus putting myself through hell because of stubbornness.  Yeah one day dosing is a pleasure, but those side-effects were pure hell for me.  Wtf, there is absolutely no reason to put yourself through this.  If I was you I would be calling my doctor concerning a med switch.

Just my opinion.
Title: Re: uncontrollable bouts of sobbing
Post by: phildinftlaudy on October 30, 2010, 12:14:44 pm
Hey wtf -
Sorry that you are going thru this -
I agree with the others to talk with your doc - let him/her know what is going on -
The Sustiva may not be for you - or may be making a previous condition worse -
Check out your options -
No one should have to deal with uncontrollable bouts of sobbing -
We are here for you -
I think you have received some excellent guidance  -
Let us know how it is going!

Best to you,
Phil
Title: Re: uncontrollable bouts of sobbing
Post by: wtfimpoz on October 30, 2010, 08:58:12 pm
Thanks everyone.  No Philly, you're not being mean and I didn't think it from what you said here.  I'm greatful for your reply.  I hadn't cried for years before testing positive, but since then I've cried rather regularly.  I'd entered gestalt therapy and had felt that I'd been making progress.  I jumped into treatment because I'd been advised that early treatment is the best way currently availabe to minimize cognitive issues, and because I'd recently had a strange illness that resulted in a viral surge and what I was sure at the time was mild neuropathy.  Since starting meds, my depression has changed.  Its a lot more random...like it comes on in waves which are getting harder to repress, and my mind circles around random morbid thoughts.  The current therapy no longer seems to be working, which leads me to believe that the current bout of issues might be Sustiva induced.  I agree that the issues existed before Sustiva, but they do seem worse.  I asked my doc about Isentress and was told it was a treatment reserved for people with "few options", who were resitant to other meds.  I'm not stupid, I'm well aware that its approved as a first line treatment.  Any tips on getting out of this situation, or should I just change docs outright? 

Skeebo-thanks, thats kinda how I feel.  Like, I can just overcome it on my own or get used to it.  This morning, I could barely get out of bed though.  Thanks for providing reassurance.

Phil-thanks for the reassurance.  You're so amazingly kind. 

Everyone:  Do any of you have any recommendations as to how to deal with a doc who si resistant to allowing me to change meds?  For some reason, my gut tells me it would make sense to be undetectable for a while before I do this, but I really don't know how long I can manage like this.  I feel like I'm being a wuss, and because virtually all other symptoms have become nonexistent, I tend to disregard the way I feel.  Maybe I shouldn't. 

Title: Re: uncontrollable bouts of sobbing
Post by: phildinftlaudy on October 30, 2010, 09:10:27 pm
wtf -
I think you may be on the right track in regards to asking your doc to switch your meds - if the doc doesn't want to comply - then I would definitely look for another doc.  The fact of the matter is, it does no good for you to be on a med that you may not be able to tolerate and if you can't tolerate it, it is only a matter of time before you may become non-adherant to your regimen.  I would think that the doc should recognize and understand this - if he doesn't then I would clearly let him know that.  As long as you have options on meds, then you are perfectly within your right to explore those options.

And, BTW, you are not being a wuss by crying - straight or gay - people cry - if it wasn't a necessary emotion, we wouldn't have the ability to do it.  It is only when it is interfering with your quality of life and when it is occuring for no apparent reason that it becomes an issue.

You have always struck me as someone who is straight-forward and rationale - so definiitely apply those qualities when dealing with your doc regarding changing meds.  Some times (repeat some times) they need a little kick to make them realize that they are sworn to "do no harm" and that means that they don't keep a patient on a medication - when there are other alternatives - that the patient may be having adverse side effects to.

Title: Re: uncontrollable bouts of sobbing
Post by: Nestor on November 02, 2010, 02:07:15 pm

Hi WTF,

I'm sorry to hear about this!  I agree with most of what's been said here.  It makes sense to start by switching to another med and see if that helps.  If it doesn't then you could pursue more long-term strategies.  As for the doctor who is reluctant to switch your meds, if this is a major problem--and it sounds as if it is--I would be uncompromising.  I would call the doctor immediately and say something like: "Look, I'm having this serious crisis, I think it's likely to be the Sustiva, and I need to switch to something else now."  And I would not take no for an answer.  If the doctor were to refuse outright, then I would look for another doctor. 

On the other hand, I'm surprised by the statement that Isentress is "reserved for people with few options".  That is very different from what I have heard.  Is there any truth in it?  And if not, is it a good idea to stay with a doctor who is capable of saying something untrue? 

But I would not wait around needlessly.  Why keep enduring something that could be changed soon?  You mention wanting to be undectable "for a while" before making a change.  That means first waiting until you become undetectable and then waiting a further "while" and only then going through perhaps a struggle with an uncooperative doctor.  And potentially endure sobbing and depression the whole time?  Why?  As Miss P said, there are too many other treatments out there. 

Good luck, and I hope you feel better soon! 

 
Title: Re: uncontrollable bouts of sobbing
Post by: wtfimpoz on November 03, 2010, 12:18:01 am
Phil-thanks for the perspective.  You're right about everything of course, I just need to find it in myself to tell him that the stuff isn't working out for me.  In the back of my head, I'm worried that nothing will.  As he put it, "everything has side effects".  You make a good point about the side effects leading to an increased liklihood of noncompliance.

Nestor-Good to see you back buddy!  The way you outline dealing with the issue is probably the best way to proceed.  My understanding is that Isentress, because its part of a newer class of meds, is popular among people who are long termers because they've developed resistance to other medications.  That doesn't mean its off limits to newbies, or should be.  Like i said, I'm not stupid, I can look up what the approved first line treatments are, and its on the list. 

In all fairness to him, I think he he wants to give me more time to see how I handle the med before I start skipping around medications.  I'll bring up the fact that the depression issues are still lingering and see what he says about it. 
Title: Re: uncontrollable bouts of sobbing
Post by: leatherman on November 03, 2010, 01:45:26 am
I'll bring up the fact that the depression issues are still lingering and see what he says about it. 
goodness, if this is your first regimen, don't just hint around. ;) You need to state emphatically that this reigmen is having a deletorious effect on your mental health (as is a widely known side effect of sustiva/atripla). you have "tried" it for two months and you're not just "wimping out" (which might have been the issue if we were talking 2 wks). These issues have increased and you want to be changed to something else. period. his is your doctor, not a god  ;) nor is he in your body and head to know how much this is affecting you - which is why you have to tell him in no uncertain terms.

but that's what everyone has been telling you already. ;) :-* You just need to get up tomorrow and call the doctor's office. Tell them that you want an appt ASAP to discuss a change of meds. (Give Truvada/Norvir/Reyetaz a try ;) I've been through 15 or more meds and those are working excellent for me ;D )
Title: Re: uncontrollable bouts of sobbing
Post by: wtfimpoz on November 04, 2010, 02:11:51 am
My therapist has decicded I suffer from seasonal affective disorder, and I agree.  One of the things I've noticed is that these "side effects" are magnified when the weather sucks...which is pretty much all the time nowadays.  Is it possible that this is magnified by the sustiva?

Everyone, I appreciate your kind words and encouragement, but don't want to start skipping around to different regimes too early in the game.   
Title: Re: uncontrollable bouts of sobbing
Post by: leatherman on November 04, 2010, 02:35:41 am
Is it possible that this is magnified by the sustiva?
yes

but don't want to start skipping around to different regimes too early in the game.   
but if you switch now to something that works, and that doesn't have these side effects and you stay adherent to that regimen then you'll still have other options 20+ yrs down the road if something should go "wrong" with the regimen you switch too. ;)

or you could continue to deal with the sustiva/brain/depression issues for the next 20+ yrs.  :D
Title: Re: uncontrollable bouts of sobbing
Post by: Andy Velez on November 04, 2010, 07:42:00 am
WTF, I just want to say that you have nothing to apologize about to your doctor. You are entitled to get good,  effective and responsive treatment.

Sustiva is a mighty powerful drug and many before you have not been able to tolerate its notorious side effects.

It's essential that you feel you can speak up with your doctor and that you have a mutually respectful partnership to keep you well. If you don't have that it doesn't matter how good a doctor he is, he's not the one for you. Your feelings need to respected.

The history of this epidemic has been that often patients living with HIV have had to educate doctors and researchers about the realities of living with it.

Keep us posted on how this is going for you.

Cheers.
Title: Re: uncontrollable bouts of sobbing
Post by: skeebo1969 on November 04, 2010, 08:22:40 am
Everyone, I appreciate your kind words and encouragement, but don't want to start skipping around to different regimes too early in the game.   

Wtf,

   I had this same thinking myself, but it really is not an issue.  You won't be short changing yourself if you do decide to switch.   Since you are going to stay on it just be aware of your emotions.  In my case it was a slow progressive decline into severe depression.  I really had myself convinced that I could handle it.  Let me tell you, when I finally did switch, the difference was night and day.

   I guess I had to learn the hard way that CNS issues are nothing to play with, I'm finally convinced.  Give yourself some time with it, but also realize if it doesn't work it won't limit your options. 

  Good luck!
Title: Re: uncontrollable bouts of sobbing
Post by: Miss Philicia on November 04, 2010, 10:31:55 am
How can this be "seasonal affective disorder" when, in fact, it actually began before the seasons changed?  And I don't even mean that it's not really winter right now, but that as the OP initially related this began before starting Sustiva the first week of September and then increased.  If the root cause was "seasonal affective disorder" then I'm a bit confused by this therapist's diagnosis.  Additionally, if the root cause was "seasonal affective disorder" wouldn't the OP have been experiencing this seasonally for years and not just post-diagnosis?
Title: Re: uncontrollable bouts of sobbing
Post by: Ann on November 04, 2010, 01:27:05 pm
SAD can exacerbate pre-existing depression and a diagnosis of SAD doesn't necessarily mean that it is the ONLY cause. Just like Sustiva can exacerbate pre-existing depression.

WTF, I can relate and empathise with what you're going through. Years ago when I was being treated for a woman's problem, the drug I was given caused me to have wild mood swings between feeling normal and feeling extremely depressed when I actually had absolutely no reason to be depressed. I was also having uncontrollable crying fits for no good reason. It felt like there were two people in my head.

It got so bad that I was actually hospitalised for over a week. When I informed the shrink what meds I was on, he asked me "didn't they tell you this med could cause extreme depression in a minority of women?" Well, no, they didn't. I just thought I was going out of my mind.

The med was stopped and I was feeling my old self within a short period of time.

I also had a bad reaction to the smoking cessation drug Champix (or Chantix, depending on what country you live in). I found myself crying and plotting how best to kill myself and that's not like me at all. When I found out that Champix can cause suicidal ideation in some people, I stopped the drug and felt better within days. I hate to think what may have happened to me if I also had pre-existing depression prior to taking either of those meds.

Because of those two experiences, I absolutely refuse to ever try Sustiva. My doctor agrees with me. The chance of me having a bad psychological reaction to it are just too great, given my track record with meds known to cause depression.

I hope you can either get your doctor to switch you away from Sustiva or find a doctor who will. Too many doctors ignore side-effects that cannot be detected by a blood test like depression. And that's a shame.

Good luck. I sincerely hope you can get this sorted out and soon.

Title: Re: uncontrollable bouts of sobbing
Post by: heartforyou on November 08, 2010, 04:08:50 am
Sustiva drove me nuts, made me very very suicidal, violent, (me???), and roaring like a wild lion.
On top of that I felt extremely depressed, as I had been suffering from depressions before.NO TO SUSTIVA.

I have mentioned this in another thread : my doc thinks the hiv meds I am taking can cause depression to (re)occur. As Ann said, I did not  have any reason to feel depressed.
But it slowly came over me, like snow on a calm winternight.
I have now started Prozac again, but it is not working yet.

One thing that may help you is the thought that no emotional status is constant.
There is day and night, winter and summer.. sounds simple but can help.

All the best to you .

xxx Hermie
Title: Re: uncontrollable bouts of sobbing
Post by: lmdo on November 08, 2010, 05:07:01 am
That is exactly what I have been experiencing. I am seeing a psychologist and psychiatrist and am on Atripla. I have not had a history of this stuff but have burst into tears on a few occassions and dropped low into such a low mood that my partner was very worrying.

The complicating factor was my partner being diagnosed with cancer, and this is my first drug regime so it could also be the ackowledgement that I am poz. But I am feeling better now. I am still under both psych's and they have in turn suggested SSRI's, but of course MORE meds on top of HAART meds which are not that friendly to the body are not a pleasant thought.

Like wtf I also do not want to give up on a regime thinking it is eliminating an option when the VL is not yet down and CD4 count is not yet up.

Seeing the GP tomorrow so will discuss - he did suggest changing meds a while ago but was not insistent. Have been on Atripla since early July this year.
Title: Re: uncontrollable bouts of sobbing
Post by: lmdo on November 08, 2010, 05:09:04 am
PS - my mood has stabilized over the past 2 weeks or so. Maybe it is an adjustment phase - I did have extreme dizziness in the first few weeks, which then stabilized. Sleeping is a problem though - just as I'm sure you all already know!
Title: Re: uncontrollable bouts of sobbing
Post by: Nestor on November 08, 2010, 05:34:27 pm

Hi again,

The basic problem is that only you know how grave the sobbing/depression problem is, so only you can decide whether it is worth switching meds over.  I think most of us are suggesting switching meds because from the outisde it sounds serious.  I certainly hope that if things do get very serious--suicidal thoughts for example--you will make a change, but I also hope you don't wait until it gets to that point!  By the way, how have things been since you started this thread?  Any improvement? 

  The alternatives to switching meds are 1) doing nothing, 2) therapy, and 3) anti-depressants.  1 is a bad idea, 2 is almost certainly a good idea but is a slow, long-term thing, and 3 is a last resort that I would try well after something as simple as a switch to Isentress.  Five or six people whom I know well are or have been on anti-depressants and in every case they have come with side effects of their own, in some cases serious ones. They may still be better than the alternative, but it makes no sense to me to try them without trying the simpler and more obvious option first.

What are the arguments against switching treatments?  1. Everything has side effects.  2. I want to be stoical and not seem like someone who can't take strong medicine.  3. If I switch treatments too often I'll run out of treatment options.  In response to 1, I would say that while the alternatives to Atripla do have the potential for long-term side effects, they do not seem to pose the threat of the kind of nervous problems that Sustiva can cause and seems to be causing in your case.  In response to 3, I don't see much threat of you switching meds wantonly or frequently--considering how reluctant you are to change even now with such grave reason for doing so!  It may be your doctor's motive but it doesn't sound like a good one to me.  "Skipping around" suggests a new regime every two weeks-- nobody here is suggesting that.  That leaves 2, which of course is an emotional and not a rational motivation.  I admire it--it is a spirit of resoluteness and determination--but it may be misplaced here. 

Besides this all I can suggest are some very basic strategies.  In my own fight with depression I've slowly figured out how certain things--some types of music, some kinds of food, some people--make me more depressed while others make me feel better.  And for some reason, sometimes when I feel depressed I'm actually drawn to things that make it worse--gloomy or high-strung music, for example.  Maybe in some cases that's a good thing--an example of going through the woods in order to get out of them--but things got better when, against my instincts, I switched to very different music, habits, etc.  Then, too, the simple knowledge that I had been through depression before and lived to see the end of it helped.  You mention SAD.  Short of moving to (or vacationing in) a nicer climate, you could buy light bulbs which are said to resemble sunlight, and a humidifier can make the air in your home more pleasant.  Then there are things like aromatherapy and massage, and of course exercise can make us feel better.  So does good dark chocolate.  None of these things will work a miracle, but they may make the rough times a little less rough.   

Again, good luck!
Title: Re: uncontrollable bouts of sobbing
Post by: Kendoll on November 09, 2010, 10:17:03 pm
I'm not on Atripla and have that same problem. I can start crying at the drop of a hat. I work in retail and just started sobbing when I was waiting on this man in a wheelchair one day. I know he must have thought I was crazy..LOL. Told my HIV doctor about it and he put me on Celexa, which does indeed help but it leaves me feeling "doped-up". Don't know what to do because I'm still crying all he time and no, I don't have the means to "go get professional help."
Title: Re: uncontrollable bouts of sobbing
Post by: BT65 on November 10, 2010, 05:00:00 am
Kendoll,

If this is a real problem, you may want to start your own thread on the subject.  Sorry for this brief hijack, Wtf.  Kendoll, every anti-depressant takes at least 6 weeks to work.  You didn't say how long you've been on the Celexa, but you may want to give it a bit longer.  Also, you say you have no resources to get therapy.  Does this mean there's no mental health facilities in the area, that will work with someone on a sliding scale basis?  I mean, I don't know where you live, but usually there's somewhere; maybe you could ask your doctor.  May require a bit of travel, (again, don't know where you live), but it would be worth it. 
Title: Re: uncontrollable bouts of sobbing
Post by: Kendoll on November 10, 2010, 10:39:55 am
Pardon me for not "starting my own thread".  >:(
Title: Re: uncontrollable bouts of sobbing
Post by: Ann on November 10, 2010, 11:58:28 am
Pardon me for not "starting my own thread".  >:(

Ken, Betty suggested you start your own thread because you will get more responses, support and advice that way. She wasn't telling you off.
Title: Re: uncontrollable bouts of sobbing
Post by: OneTampa on November 10, 2010, 07:46:01 pm
Willy and Ms. P. make good points about Sustiva.

I, however, have posted several times about my experience with Sustiva now over 10 years.

I started taking Sustiva at the full 600 mg dose and it sent me around the bend in short order (dizziness, balance issues, sleep disorders, etc.) and it was quite scary. I went through all of this for a few weeks.

I saw my doctor and he immediately reduced my dose to 400 mg.  Soon thereafter those awful extreme side effects ceased.

Aside from ocassional vivid dreams (no nightmares) I have tolerated Sustive fairly well. I also take Viracept at low dose and Epivir all to good effect with non-detectable VL for over 10 years.

I was never prone to depression pre-Sustiva and have not had debilitating occurrences during my time on it after the dose reduction.  

The one thing I can note here again as I have stated in previous posts, is I do tend to get "happy weepy"/"sad weepy" at turns when an event, interaction or memory deeply affects me. However, generally, I do not have wild swings in behavior or feelings. I also sleep fairly well.

I believe Atripla has the full 600 mg dose of Sustiva as a component.  As a result, the option may be to change out meds to something else.  

It still appears that HIVmeds affect each of us quite differently as I see it.

I hope my post helps.
Title: Re: uncontrollable bouts of sobbing
Post by: wtfimpoz on November 11, 2010, 06:40:28 pm
Everyone, thanks so much for the support.  I have an appointment in a few weeks and will bring the situation up.  I've noticed that my mood has been MUCH improved lately as the sun has been out.  I'm also having less (almost no) mental fogginess and confusion.  I don't believe the latter issues are known as symptoms of SAD, so its kind of bewildering.  Honestly, on days like today, I'm free from side effects and feel absolutely fantastic.  Its really hard to tease apart what is a pre-existing psychological issue and what is med related here.  I think it was Ann who suggested that the two are working synergistically, which is kinda where my gut is.  I've also yanked myself off the sleeping pill I was on (ambien) and that seemed to make a big improvement.  I like the idea of testing to see how much Sustiva is in my system.  The single-pill forumula works well because its fewer copays, and I'm sorta hesitant to shell out the additional money for a new regime if something else will work.  I know its ridiculous to hesitate over a small sum of money like my copay, but its how I'm reacting.           
Title: Re: uncontrollable bouts of sobbing
Post by: BT65 on November 13, 2010, 05:30:19 am
I know its ridiculous to hesitate over a small sum of money like my copay, but its how I'm reacting.           

Why is that ridiculous?  Money is something that's in short supply these days for most people, so I would say it's a very well thought out reason to not switch-if everything else, CNS wise, is going alright.  Good luck!
Title: Re: uncontrollable bouts of sobbing
Post by: Inchlingblue on December 17, 2010, 05:39:19 pm
The single-pill forumula works well because its fewer copays, and I'm sorta hesitant to shell out the additional money for a new regime if something else will work.  I know its ridiculous to hesitate over a small sum of money like my copay, but its how I'm reacting.           

Almost all the pharmaceuticals have co-pay assistance for people who have private insurance and co-pays. I take Isentress/Truvada and pay zero co-pay because of this. The one for Isentress covers any amount up to $200. per month. The one for Truvada covers any amount up to $400 per month.

If you stay on Atripla you can use the program, it's the same as the one for Truvada, and your co-pay would be covered.

LINK:

http://forums.poz.com/index.php?topic=35582.0