anxiety & HIV meds after tapering from benzo usage (I really need help here)

[wylidas]

I've been taking the same HIV meds (Epzicom, Reyataz, Norvir) since October 2007 regularly with little to no problems except generalized anxiety until January 2011. In January through a series of life events I started having chronic anxiety and panic issues, and I went on Ativan daily for almost 8 months. During that time I began having all kinds of issues taking my HIV meds. I didn't want to take them because they were interacting with Ativan and Buspar I was prescribed at the time to help with the anxiety. This let to me going off them (without my doc's knowledge for close to 3 months). I reinstated the meds in July, and have forced myself to take them with only having a few days here and there where I neglected to take them.

I have been back to the doc since then and my CD4 is back up, and my viral load almost back to UD, so I am in the clear so to speak with the HIV for now.

But, in July after much thought and consideration, I realized that the Ativan was not helping me any longer and that I might be going through what is known as interpose withdrawal, so with my doc, we came up with a plan to taper me from 2mg/day down to nothing within 8 weeks. I have not had a benzo since September 22, and the taper went better than expected, but since the final dose I have been a roller coaster of a mess. I have severe anxiety and depression now, and there are days I absolutely dread taking my meds because for about 2-3 hours after taking them my heart feels like it is pounding through my chest and I am going to drop dead of a heart attack or something. I never felt like this to this degree before benzos, and I am really freaking out here.

I have joined a benzo withdrawal support group online forum, and that seems to help me realize that this is indeed part of the benzo withdrawal beast, but I feel with the HIV meds as part of the equation, that it just isn't getting better.

Has anyone on here ever been chemically dependent on benzos and had trouble coming off? I feel so scared and alone, with no real support system in place for all these issues.

[eric48]

Hi,

to make a long story short, I also suffer anxiety issues which I attribute in part to Post Traumatic and in part to Epzicom (I have no proof, though)

I find it very difficult to handle but have (thus far) not considered stop the med (eventhough I have been contemplating that option)

I have also suffered from severe sudden pain chest for which cardiac problems have been ruled out after a comfortable stress test.

There is one little trick that seems to have put and end to the chest pain (which I initially was told to treat with 2000 mg of aspirin, and it worked)

I still take some aspirin on a regular basis. Also I have found that taking some Natural fiber (psyllium) AFTER eating has put an end to the chest pain issue.

I 'think' the idea is that the anxious persons eat up air as they swallow (this came very visible on various X-rays I did at that time)

I think that the gastric bubble is creates may have compressed my heart which resulted in chest pain. Somehow the fiber seem to absorb that excess air and, well... it works for me...

As for the anxiety crisis, they can be difficult to handle while at work or driving, etc.

While medication seem to bring some relief, it also comes with other problems.

Being able to lie down and rest for 1-2 hours seems to act the same.

I also take 1/4 of a sleeping pill around 8 PM (thus quite early), it seems that is helps me have better nights and help things improve gradually

My problem is really in dosing the anxiolitic or sleeping pills. If I take to little I can't sleep at all, but if I take a bit to much I have a hard time staying awake The next day.
(and bear in mind I cut the pill in 4...)

Hope, you will find a solution

and... welcome to this forum...

Eric

[wylidas]

Hi, Eric. I am curious, why do you feel the anxiety is due to the Epzicom? I have often wondered if the HIV meds might be to blame since it was shortly after I started taking them that I began having panic attacks for the first time in my life. I learned to deal with them on my own, but now the problem I am having is from benzo withdrawal. I don't take anything anymore to help me sleep or to put me at ease, because I was able to deal with it before just fine without pills. It's just that coming off benzos (drugs like ativan, xanax, klonopin, valium) can be a nightmare for some people, and I happen to be one of the 'lucky' ones. I wish I had trusted my gut instinct and never started taking anything, but it's one of those lessons learned I guess.

Anyway, I am just curious why you feel it's the Epzicom? Have you seen somewhere that it causes these problems?

[Tempeboy]

Hi wilydas,

I have heard of quite a few people who have experienced anxiety whilst taking atazanavir.  Anxiety is listed as a possible side effect in the product information.  These people report improvements in symptoms when they change to another drug.

TB

[wylidas]

Hey, tempeboy. So what kind of switch would be ideal? I have tried Isentress and it did some pretty crazy, weird stuff to me, too. I feel like I am running out of options for truly effective meds without side effects.

Is there anything that doesn't have a negative effect on the heart or anxiety/stress? Those are the ones that I can't bear anymore. I mean what's the point of fighting off HIV only to die of a heart attack induced by anxiety and stress from medication? I truly hate sounding like a cry-baby, but I am so over this feeling of chronic stress and like my body can't relax ever.

[olliederp]

I too suffer from anxiety disorder. I don't know because I take atripla but you might want to look into wellbutrin daily and something like xanax as needed. That's what I take and have been told by my doc that they won't interact with my hiv meds. Aside from med therapy you should take a stress management class. I took one last year and have found the techniques I've learned to be invaluable at times. Good luck!

[eric48]

why do you feel the anxiety is due to the Epzicom?

I never had anxiety issues (at least up to the level of clinical relevance) until I was diagnosed.

I though I had made it through the horrors years of HIV-without-survival. When I was diagnosed, I fainted. I fainted a few times thereafter, but I was in reasonably good shape when I initiated the med (in June), then in August stress like syndromes came, but, under an other form. See for details:

http://forums.poz.com/index.php?topic=33062.0

It's a catch 22. A switch is not without risk. The kind of symptoms I have could be bearable if they would be kind enough to fade away.

I have leg muscle twitching for 16 months now! I doubt that this is 'psychological' stress ONLY

Why Epzicom rather Viramune be the culprit ? Because I did saw a difference in sleeping disorder when I time the Epzicom in the evening vs when I time it in the morning (whereas Viramune was 2 x per day for 6 months.

I tried to take the Epzicom in the morning for a while and could not handle it. I reverted to dosing it at nights for a few months. Now I take it in the morning.

I have also read a few posts here and there mentioning anxiety due to Epzicom. I have never read such complaint about Viramune...

My Doc does not acknowledge that it could be meds related. He is so happy that everything else seems OK

But, I am really getting desperate....

Eric

[wylidas]

Well I took this combination of meds for over 3 years before I started taking Ativan in January of this year, and while I didn't have perfect days all the time, I had enough good days that the occasional anxiety jag didn't bother me.

But, ever since I took Ativan daily for 8 months and then come off, I have been a nervous mess of jitters and worry and not even wanting to take my HIV meds anymore. I joined a benzo withdrawal support group online and this kind of increased anxiety and depression is apparently common with discontinuation of benzos, but there is no telling how long it will last. It is really driving me insane. Every day it's a roller coaster of emotions over taking my meds. When I take them, I feel like absolute hell for most the day. When I don't, I am able to function and feel fairly normal for a while. I am also feeling desperate here. Honestly, some days I think I'd rather just take nothing and die sooner. This is no kind of life.

[Miss Philicia]

Why are you just going to a support group? Why aren't you seeing a mental health professional about this issue?

[wylidas]

Hi, Philicia - I didn't mention my entire history, sorry about that.

I do see TWO CBT therapists and a psychiatrist.
The problem is they don't have HIV experience, and my HIV doc doesn't have benzo or benzo withdrawal experience.

I joined the support group because there are thousands of others out there who are going through the same thing, and it's the only thing that helps some days.

[mikeyb39]

I can relate to your problems as well.  I'm still trying to figure out the answer.  A few years back i had horrible lower back problems, i went to my doctor and he put me on tramadol advised I could take up to 4  50mg per day and  that this medication was not addictive.  Well he was wrong about that becasue after about 4 or 5 months i just quit and had the most horrible withdrawal symptoms.

I also tried the tappering off option and its easier said than done.  The problem with the tappering off is that you have to have someone in control of you're tapper otherwise it will not work, at least it didn't for me.  i got down to just taking two pills a day, but anything under that leaves me feeling horrible, depressed, body aches, sweats.

a teatment facility wasn't an option either, it seems that unless you are really an addict, then they won't accept you. the medication and the amount i was taking did not qualify for being in an in-patient treatment facility.  so that is where i'm stuck with this. 

[wylidas]

mikeyb- I am so sorry to hear you're going through this. If it helps at all, just know that you are not alone.

If you're interested in joining the site I am a part of it's called benzobuddies.org

You can register, and post in forum and even chat there with other members. It's been a godsend on my really bad days. Just remember you're NOT alone!

[Miss Philicia]

I've done klonopin now for a decade. When I started it I took it daily as prescribed for general anxiety disorder. I was in cognitive behavioral therapy at the same time, so eventually (like several years actually) I was able to control panic attacks more and more without using any benzo. I still get klonopin monthly from the pharmacy, but now I just use it to get high for 2-3 days, taking huge gobs at once. Really the only "withdrawal" issue for me, and I've been doing it for years, is that it effects my sleep patterns for about five days after taking the last pile of pills. Then I'm fine for the remainder of the month.

But yes, certainly I have heard horror stories about benzo withdrawal. Obviously different bodies will react to this class of medications differently. Still, most people should not be given large mg doses in the first place, and I find it reasonable to taper off from -- for example -- a daily dose of 2 mg of klonopin. These medications are ideally meant for short term use, with supplemental CBT taking its place as the patient learns to control anxiety levels without medication.

As far as the OP goes, it sounds to me like you should have just stayed on Ativan -- obviously you're not controlling your anxiety issues in the absence of medication. I'm still not all that clear on why you went off of it at this one point in time. It's clear you have rather severe anxiety issues about your initial diagnosis, but then something kicked it into a higher gear at the beginning of the year, though you don't state what exactly caused this. But whatever, I guess you're discussing all of this in detail with your therapist. But good luck, I know what extreme anxiety levels can do in a very ruinous manner, and all I can offer is that it is possible to eventually control them but it does take a bit of work.

[wylidas]

Thank you, MissPhillicia, for sharing your story. A bad relationship is what kicked the anxiety into overdrive earlier this year. That relationship has since ended, and I decided to get off the benzos, because I was never really into taking them to begin with. I tried this route because I was hoping it would lead to me getting over the extreme anxiety I was feeling at the time in the relationship. Now that the relationship is no longer, I felt it was time for me to deal with these issues on my own without using medication. I truly believe that med-free practices are the way to go.

The problem arose when I came off taking it daily for 8 months averaging 1.5 mg of ativan per day. It's has thrown my central nervous system for a loop and compounded my anxiety so that even the simple things feel overwhelming. I did not want to consistently take a benzo for years, as the longer you take it, the harder it is to discontinue generally. I also have come to find that I have a generally more sensitive system than most. I do not even drink caffeine or eat carbs or sugar anymore for this reason, and that has been this way for several years, even before benzo usage. So, I probably should have thought twice before ever starting such a potent medication earlier this year.

Again, I appreciate your sharing and suggestions, but taking Ativan was not the right choice for me. Also, my anxiety issues have always been present, in part due to the HIV and the side effects from the medication, but they have always been manageable until earlier this year. There was a definite psychological break in January 2011, and I know beyond a shadow of a doubt that it had nothing to do with my HIV diagnosis, as I have been diagnosed since 2006. The relationship was the problem.