Jump to content

in WD or tapering with minimal symptoms - how do you get through work?

Recommended Posts

Simply put -- We all know how devastating wd can be to the body and mind. It's debilitating even if you have all the time in the world and no external stressors.

How do you guys deal with work when experiencing whatever symptoms you might have?

Before my taper gone wrong and subsequent protracted symptoms, I was on 3.5 to 4mg of Klon a day and it saved my life and academic career (went from being suicidal to getting a science doctorate). Now, I am so lost when it comes to not only planning a career, but a life, family, etc. If I have to do the long taper (assuming I stabilize), I have years ahead of me of awful symptoms and I cannot see myself being productive, let alone excelling. These are the years when I need to be most productive, sharp and energetic. Yes, works helps distract, but only if the symptoms are at a certain level (e.g,. where you aren't dizzy all the time).

Thoughts and experiences?

Link to comment
Share on other sites

According to this really smart neuropsychiatrist i saw, he said very low-dose Seroquel is the answer. Of course, he told me to get on the drug and i said i was too afraid of the stigma of being on AAPs. He relented. Your options are SSRI, SNRI or Wellbutrin, Buspirone, AAP, or holistic. DP will make you dizzy and Klonopin in larger doses can make you dizzy. I would look into low-dose SSRI and Wellbutrin XL together. Go to your psychopharmacologist and see what he says.

Link to comment
Share on other sites

  • 1 month later...

rollingregret, I think sometimes after we're used to a way around hppd, (like using benzo's or opiates) once you try to return to baseline, you realize why you went through hell to get on these drugs in the first place.

I'm pretty sure I've become close to complete tolerance on 4 mg's of klonopin after 13yrs. I've been having the worst last couple of weeks just realizing I will eventually have to come off of klonopin and it's like a feeling of going to court for a death sentence.

I don't know what's going on w' me. The only drug I've started different is nuerontin, but I've been extremely ...extremely suicidall lately and I've heard it has that side efffect on the commercials. I'm drunk pissd off, and just sick off taking pills and not knowingwhich one is working correctly. I should erase this post but fk it might as well get some feedback

Link to comment
Share on other sites

I'm not gonna make you do something, but alcohol+benzo=respiratory depression/death........[[[[ though not something i wouldn't do a few years ago.

Ween off K and get on A, K is for GAD. Once you get off K, instead of GAD you will have acute Panic Disorder. In which case, A is your med.

Link to comment
Share on other sites

BTW, never getting off klonopin as long as prescribed we're soulmates :) Kinda like getting married, once you commit, you're commited ;) I just have to keep working, exercising, spending time w/ family ect.

Hppd is hell to live with, but if we're lucky enough to have the internet and $ in this struggling economy and cruel world, it's def. worth the ups and downs.

After watching 4 hrs of the science channel, doesn't seem like we'll have too many blue planet's to kick it on. So gotta give this one a try lol.

But for real, I'm trying hard. I've been completely sober since my last post (besides K-pin) and I just took my last 50 vicodin and flushed them down the fucking toilet. I don't think anybody realizes how hard that is to do with hppd giving me pain 24/life I'm so proud of myself, I'm making my girl give me :o for doing that!!

Rollingregret/ hope you're back to your baseline man. It's crazy, I don't actually know you, but w/ so many similiar experiences w/ (benzo's) It's kinda like I do. We all got so fucked getting hppd, but reading this board 24/7 just makes me regress. I've been doing better just hiking, golfing or whatever gets me living instead of trying to figure out how to live.

Link to comment
Share on other sites

I know what you mean '98, I too feel like after all we've been through, our life situations are so similar that we do know each other in ways that other people can't fully grasp.

Got a new pdoc. She's awesome. She's committed to giving me all the support I need to lead a normal life. This means trying different strategies to get out of this mess. Only problem is that these is no obvious solution to fix this very strange problem. She's even open to high doses of klonopin and mentioned it's not inconceivable that this cut has just required it, unfortunately. Anyway, for the time being, and upon your advice and that of others in these threads, I started 300mg Gabapentin TID. First impressions:

- (consider I can tolerate 5mg klon with no side effects) EXTREME drowsiness the first day (day before yesterday) and for the most part it's persisting. Initially the sedation effect removed some of my uncomfortable benzo wd symptoms.

- It's day 3 now and I'd say it's partially alleviated some symptoms, particularly the muscular tightness ones, but today, even with the drowsiness and feeling of relaxation (closer to normal), I feel like my tunnel vision/inability to focus is still there. Add to the fact that I feel so lethargic, I'm not getting any more productive. Just feel like lying down and doing nothing. Skin crawling largely gone.

- I know it's a starting dose and perhaps at 900 I'll feel a more benzo-like effect, so we'll see. I'm going to be seeing her again in 13 days. I really need this drowsiness to normalize, otherwise I won't be able to stay on it.

- Very scared about this supposed weight gain. Is it perhaps overblown on the internet?

I know I should probably start a new thread about this experiment or add it to my previous one, but I feel pretty guilty about starting so many threads. It feels like there have only been like 3 or 4 of us on these boards on a pretty regular basis for the past 7-8 months. I've sent David PMs in the past, but never got a reply. Anyone know if he's around?

'98 -- LOL at your suggestive use of emoticon. While sometimes the board does remind me of my troubles, I will admit that you have all also given me support when I really needed it so compared to a militant and ironically very negative board like benzobuddies, I actually get solace from talking to you guys about HPPD and our courses of action to right our respective ships.

Link to comment
Share on other sites

  • 3 weeks later...

I just returned from a trip, and I have been away for a few days. Here is a response to concerns about GABAPENTIN (NEURONTIN) to start:

Gabapentin generally induces drowsiness and feeling drunk during the first three days. The first day the experiencing of the effects of Gabapentin are most severe (Call this X).

By day two, most people can have X+ or X-. Day three the other symptoms will be down to X/2. And by day four it is X/3 and maintains that so long as the dose is maintained and no stop in taking Gapapentin. This only refers to the noticable side effects. Along with the other effects I listed, GABAPENTIN is abused for the euphoria that can accompany for the first few uses. Rapid speech, noticable high, lack of inhibition are common in about 1/2 of people I have met with prior drug experience.

Regarding "Skin crawling largely gone." - Neurontin should help with symptoms of Restless Leg Syndrome, and is effective at improving nerve related side effects of other drugs.

GABAPENTIN does not have the same anti-anxiety effect that a benzo will provide. It will reduce inhibitions and anxiety related to social functions (Might find you are answering the phone more often or taking on tasks that were once anxiety-producing (e.g. I knew people who would take it to "talk to girls").

Drowsiness should abate by a week and will return with dose increases.

GABAPENTIN increases pleasure with smoking in a group of people in my experience. (Cigarattes. With Cannabis, GABAPENTIN often makes the experience worse and increases the depersonalization and derealization symptoms during smoking).

The weight gain information is not substantiated and I do not see it in people who take gabapentin unless they are taking it with a drug like Zyprexa (olanzapine), which is known for causing weight gain.

Gabapentin is well tolerated in most people, abuse by some for the initial euphoria, has the benefit of not being metabolized in your liver (so no liver toxicity increased and impossible to overdose on the drug). Gabapentin can affect your vision as you describe (tunnel vision/vertigo) and particularly during the first few days.

Gabapentin definitely has promise with certain forms of anxiety, and affects people differently. It activated me (felt somewhat like very mild MDMA as far as my rate of speech, comfort in my setting, reducing barriers to behavior [this is not always a positive thing] and does make my mouth dry and more likely to make me appear "Drugged" than clonazepam at this point (10 years, 1mg TID and trying again to reduce w/new doc).

I have found a single 100mg capsule of Gabapentin put me into a manic (like) state and people thought I took cocaine. I also find that most people taking 1600mg on initial dose (two 800 tablets) will experience extreme effects and dangerous to drive. But, this "high" goes away after a few days and levels off. Taking the medication in the divided doses rather than using the instructions "take 400mg three times daily" to mean "Oh, I'll take all three now and see what happens" will help reduce the effects in the beginning.

Hoped that help regarding Gabapentin.

- David

Link to comment
Share on other sites

Hey David,

Thanks for your reply. Hopefully you'll have the time to give me some more insight.

It's been 22 days on gabapentin and 8 days @ 600mg TID. It certainly seems to have potential in treating my physical HPPD-related symptoms, which I think are together basically a co-morbid somatoform anxiety state (note: I don't have and never have had psychological anxiety). Still, it hasn't gotten me back to baseline, i.e., when my 3.5mg/day of klonopin was working wonders for me (for many years and without dose escalation).

The side effects, as you alluded to, have worn off even at a higher dose. I am very active and don't feel any sedation. Unfortunately I have suddenly gained 5 lbs and it's visible around my abdomen. (*double facepalm*) I know the net is a bad place to find bad side effects, but in a very large sample size, more than half of the people just talking about gabapentin (not necessarily complaining about it, and often saying how it helped) report massive weight gain. I don't think I can mentally deal with this since I'm naturally reasonably fit (no six pack, but good BMI, flat stomach when dieting and eating right, which I am).

You mentioned that it would only be useful for social anxiety and more mood related stuff, but would not have the same anti-anxiety potential as klonopin. I'm confused by what you mean. To be clear, I have no social anxiety although trying to cut my klonopin dose from 3.5 to 2.75 in 30 days last December resulted in a protracted state of wd, persisting even after going back up and above (on 5mg K and still no return to baseline) -- which has resulted in what is essentially chronic discomfort and pain and very little desire to socialize (akin to having a cold...when you're sick, you don't really feel like hanging out). Thus the gabapentin is not to ameliorate any social or psychological aspect, but rather the moderate levels of head pressure, tension headaches, etc. (which I think are part and parcel of the whole "feeling wired"/tunnel vision thing -- it's a lack of calm due to a hyper-excited CNS).

So the real issue is that my purely physical symptoms (I don't care about the visuals, they're just part of reality at this point) persist and are

a) not reacting effectively to klonopin (I hypothesize by some mechanism of induced tolerance by an attempt at a reduction that was too drastic)

b ) the benzo withdrawal may have exacerbated this

The issue now remains: how do I treat my symptoms? Klonopin seems to have been rendered useless, although perhaps my threshold has just been raised so that I require a very high dose (not unheard of). It's noteworthy that I was at 4mg for around 4 years (basically just off the bat, not due to escalation) with no side effects. I was able to reduce to 3.5 in one shot with little trouble. It's only when I was forced into a compressed reduction some months later that all hell broke loose.

If you're suggesting that gabapentin won't work (and I'm already very unimpressed with what it's done to my metabolism), what other choices do I have? Let's assume that my underlying condition persists. Getting off klonopin (which was stupid to attempt in the first place since I was doing fine on it) is not going to do anything to help this.

Thoughts? Suggestions of other meds to try? Any chance that I'll eventually stabilize on the klonopin or have I just rendered it useless? FTR, Dr. A suggested gabapentin as well as SSRIs.

Also, do you have an account of your struggles and accomplishments related to your reduction of benzos. I know from being a board member since 2006 that you've had your war with them. Is there a blog where you've chronicled why you stopped, how you tapered (or CTd), what the result was, how you've come to be in the place you are, etc.? I've long admired your dedication to this community (you're pretty much the leader IMO) and your ability to be coherent and productive in the face of such terrible trauma. I'm a scientist (mol. bio and some neuroscience) and I've been really impressed with the effort you've put into making this an academic subject. As I told Dr. A (and, of course, he agreed), we really need so much more research down to the individual genotyping. Different drugs work so variably. I see the future of psychiatry involving highly personalized treatment. In addition, I think one thing that is lacking from the understanding/definition of HPPD (in the DSM IV), amongst other things, is the mention of it's coincidence with anxiety disorders, DP/DR, etc. Anyway, that's all tangential. Need help. Please and thank you!

Link to comment
Share on other sites

Interesting to see her read from her bible.

I have a love/hate relationship with Ashton. Certainly she is important for bringing the phenomenon of dependence, tolerance and the harsh withdrawal process to the public sphere. Incidentally, I haven't met one doctor who has been involved in my treatment with benzos (total 4, including Dr. Abraham) who has any clue who Heather Ashton is, or about her protocol.

She makes so many good points that go so effortlessly overlooked or ignored by most doctors, namely

- don't push a patient into a taper

- let the patient control the rate

The problem I have with her is that she spawned the anti-benzo community, which became far too rabid and led to legislation in the UK and Canada that made doctors leery of prescribing benzos. This lead to a new doctor (as I have chronicled in many threads) taking over my case, wherein I had found my miracle cure to unbearable symptoms for 4+ years with zero side effects, and forcing me into a rapid reduction, resulting in me (one year later) stuck in protracted wd at an even higher dose! Did my doctor listen when I said I wasn't ready for my next cut? No. Did she believe me when I said that the wd was too intense and that my underlying condition wasn't being treated? Nope (had to go see Dr. A to validate that HPPD was real, even though I was already being treated for it officially prior to her taking over my case).

I had no problems with the only drug that really worked and tbh I probably could have reduced without this life ruination if I had been allowed to go slower. The irony is that the medical community has come down hard on benzos and benzo-using patients and then forced them into wayyyy too rapid tapers and sometimes CTs! Utterly amazing and horrific. It's like they only got half of the memo.

In addition, many people take benzos long term with no problems (I'm talking 20+ years). The blanket assessment that benzos can't help in the long run is a medical fallacy. Yes, probably for many, tolerance is an issue (which should be dealt with delicately), but for so many people, it has saved their lives, including mine. Then the rug has been pulled out from under us. Absolutely benzos cause dependence, but not always tolerance and little incidence of addiction (using the word in the correct sense).

The one thing that Ashton just brushes off is that thousands of people on benzos are leading normal lives and the idea that one MUST come off them, no matter how slow ignores the fact that we have jobs, school, lives that get obliterated by benzo tapering when it just is not necessary. She seems to understate just how brutal the syndrome can be even if done slowly. That said, she's completely right about the fact that they're awful to come off of, but that doesn't justify them not being prescribed or more to the point, them having to be withdrawn from when they're working perfectly fine. The medical community is woefully disconnected from the helpful things she preaches and the seeming overall message that benzos are bad and one must get off them. Now I'm on 5mg/day, which does nothing but prevent further wd (who knows, maybe 7 is my lucky number, but we're in cuckoo territory here), trying all sorts of other meds with horrible side effects when my original stable dose should have never been tampered with by a GP. The truth is that people on benzos don't have "rights" to say "no, I don't want to taper and you can't make me". Had I known it was going to do this to my life (tapering too fast, not getting on benzos), I would have found a way to get them prescribed by another doctor. I think we only learn about who this woman is once something bad happens in our benzo experience. And the docs? They never learn.

Link to comment
Share on other sites

But, let's face it Xanax can lead to seizures when WDing. There seems to be less a risk for Ativan and Klonopin [likely because of the slightly longer and much longer rates of metabolism respectively for these drugs, as compared to Xanax (which is very short acting)].

Doctors are always trying to save their asses to avoid any sort of malpractice lawsuits.

Link to comment
Share on other sites

Absolutely it can + worse withdrawal due to short half life as you mentioned. Problem is that she takes the absolute view that long term benzo use is impossible when that's patently untrue. Just strikes me as unscientific to not even mention the possibility. With proper management and supervision, it can be done.

+1 re:covering their asses (most of them, and mostly the least educated to make a decision)

I've had 2 doctors who essentially saved my life and one GP who undid all their help. Thankfully I've got a terrific new one. Not out of the woods yet, but it feels nice for someone to have your back.

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Create New...

Important Information

By using this site, you agree to our Terms of Use.