FreedomGirl: new here & trying to get my life back from xanax

[FreedomGirl]

Dear S/A friends,

You all seem so very knowledgeable, kind, and caring. So I joined yesterday and spent time reading several posts, gathering insights and trying to calm myself down. I need your best wisdom and gentle guidance in coming off the Xanax that's held me captive for years. Desperate for encouragement. There have been so many naysayers telling me I'll never get off Xanax unless crossing over to Valium first, and "good luck with that" - leaving me in tears because I don't have a benzo-wise doctor anyway. Can't bear to hear anymore scary stories. Left one forum due to the negativity and mis-information and discouragement.  Need help with tapering. My best choice is probably a micro-taper using water, since my nervous system is so messed up. But I am no good with Math. I've been dosing 3 x daily since Jan. 13 in order to stabilize. I think it's helping but I still have a CNS that needs time to heal. 

Yesterday, I posted under your benzo section as way of introduction, not aware that I should probably come here first.   
http://survivingantidepressants.org/index.php?/topic/5722-newbie-need-guidance-wxanax-stabilizationtaper-plan/?hl=freedomgirl

History:
Various A/Ds (1985-'92) then weaned off and med-free, 1992-99. Insomnia & difficulty falling asleep was huge issue afterwards, but I just considered myself a night owl. When I got a new job, I went to a p-doc for help with sleep since I thought he'd know best about brain issues, but I've regretted that choice ever since. He diagnosed my chronic sleep issues as anxiety & depression. But I was anxious and depressed from sleep deprivation. Given an old tricyclic for the sedative affect (imipramine); worked great, '99-2003. That doc left town; left me hanging. When experiencing early morning wakenings with w/pounding heart and tachycardia, my PCP put me on beta blocker. I told him I felt the imipramine was the problem, but he argued against it, wanting to change me to Prozac. I moved on, looking for a doctor to help me get off the imipramine!  Brief trial & error with different SSRIs that didn't work, made sleep worse, or created panic. Settled on Cymbalta 20-30mg 2004- 2011; sleep issues continued;  Seroquel introduced (2004-2014) and Xanax PRN continued.  

Xanax was prescribed 3 x daily (0.25-0.5) for GAD. I took less, half, sometimes skipped days, sometimes took two if super stressed out but usually never more than one 0.5mg pill. All these years, never prescribed more than 0.5mg. Knew it was addictive, took sporadically hoping to save myself from "issues" with benzos. Had no idea of potential for short-acting benzos to cause interdose w/d. Asked same P-doc for help three different times. Said just cut in half and stop taking after a couple weeks. GAWD. Whenever I'd take less Xanax and report anxiety, p-doc said it confirmed I had GAD, so I felt defeated and kept taking it.

Finally.  Realized Xanax *could* be the reason for CNS volatility (dysregulation) that started last year (Jan.2013). Adrenal exhaustion in later stages can also mess with HPA axis, etc., and I'm doing all I know nutritionally to address tired adrenals. Doctors just see moments of hypertension and give pills for that, but my BP drops to very good readings whenever I'm not having an adrenaline "surge." 

Over a year now:  Constant up & down BPs w/minor irregular heart rates (not detectable on EKGs) that seem to correspond with adrenaline surges. Cortisol at times has been high. Hx. of Afib, on medication for that, not having anymore incidents. No doctor, neither endo or cardio or PCP has considered the sporadic use of benzos as damaging to the nervous system. They all see my med list with Xanax "taken as needed" but I guess if they don't "look" for something, they don't find it, right? Or maybe it's just my worn out adrenals. Also dealing with hypothyroid & menopause. 

Homebound, trying to avoid outside stressors and stimulation. Even my scary thoughts set me off. Can't enjoy TV, movies, or parties, shopping, etc - first, no energy, second, the noise/stimulation is too much. I can hear traffic miles down the road when lying in bed at night - never bothered me before. I've lost weight, have little appetite (it comes and goes), and just generally go from having an 'okay' day to anxiety and fear again over all this. 

My main need is help with setting up a taper plan for this Xanax. I've noticed some improvement since taking my Xanax on a regular basis since Jan. 13. Still get anxiety and fearful sometimes, and thinking about bedtime and sleep just really does a number on me due to hx. of insomnia. If I sleep at least 6 hours like I managed last night, I'm so much better. So I cant gauge how "stabilized" I am on this present Xanax schedule since sleep is such a big factor. 

Weaned off my sleep med (seroquel 12.5-25mg) once and for all last year - seemed to go well. I'd already tapered off low dose Cymbalta (20mg) over a year before, no seeming issues. Maybe I forgot the issues? I've always blamed cognitive stuff on fibro or hypothyroid. Constant issue with me has always been sleep/insomnia, which is why after tapering off Xanax last May, I reinstated 3-4 wks later due to sleep deprivation.

How long do I stay at present dose before tapering? Is it possible to keep blood levels okay with 3 x daily dosing? Some have tapered off a single daily dose and I sure dont understand how. I'm at the point where I just need to decide on a 4th dose to spread out the Xanax more evenly, or stay put. Don't wanna keep messing with my CNS but DO need sleep. DO need to get a taper plan in place soon.  

You are so kind to read all this. Your encouragement would be extremely helpful right now.

Gratefully,
FreedomGirl

[Zoe]

Welcome- Someone will come along shortly with more knowledge than I have on this subject. Just know that you have found a good site with lots of kind, caring and knowledgeable people. You are not alone in this. Hang in there. Hugs sent your way.

[areyouthere]

Welcome. Good job with the detailed drugs/ doses and recent tapers etc.

 

So is it correct that you are currently ONLY taking xanax and dosing it REGULARLY as described after "currently" in your signature? If so, for how long have you been taking that dosage, scheduled in that fashion? 

 

Also… can you describe in a bit more detail any symptoms that you are currently experiencing, especially any patterns that you have identified. 

 

I am not officially a giver of advice but do know that the info. that I have requested will be useful for those who are.

 

One more thing…it is possible that the rather quick taper from the AD MAY be suspect in causing symptoms …depending on what they are etc..   just an FYI.

 

Again welcome ..

 

RU

[Meimeiquest]

Welcome Freedom Girl!

 

It's amazing how one psych drug can spawn so many, isn't it. It is generally recommended to leave the benzo for last here, so kuddos on that. And on moving to a regular dosage schedule. Many recommend dosing evenly divided throughout the day, although I couldn't tolerate that. But it is something to think about. The general template is to wait till you feel stable, then try 10% reductions of the last dose. However, with your past tapers your nervous system may need smaller percentages.

 

Alto recommended acupuncture for taper-related hypertension. I couldn't afford that, so took a beta-blocker. Because it is essentially a psych drug, it worked too well, then I couldn't stop it, so it's on the taper list as well. I am taking an ACE inhibitor right now and that is working out so far. I think spironolactone might also be a good choice as it decreases adrenal hormones, or other diuretics (I couldn't try them as I am on lithium still.)

 

I read yesterday that niacin helps GABA cross the blood-brain barrier, but I don't know if that is actually true.

 

Xanax Withdrawal by Stuart Shipko, MD, was worthwhile to me. He makes it sound easy, but also says prior exposure to an antidepressant or antipsychotic will make it more difficult.

If you have fibro, I highly recommend Unravelling CFS, an e-book on Amazon. It seems like the mechanisms discussed are very similar to the drug withdrawal process.

 

Good luck!

[FreedomGirl]

Thank you, Zoe, Meimeiquest, and areyouthere for the warm welcome! Thank you!

Yes, I'm only taking Xanax now. But take sotalol for heart, Spironolactone 25mg, and on hormones/thyroid replacement.

Changed my Xanax dosing schedule from 10-4-10 (on Jan.8th) to 8-4-11 on Feb. 4th. Regular dosing since Jan. 8th, just changed schedule.

Main symptoms: adrenaline surges accompanied by spikes in BP  & irregular heart beat. Waking up often at night. I feel "fullness" in the back of my head during adrenaline espisodes, sides of neck will feel tight, and anxiety, of course. Feels like adrenaline rush - even if only mildly so - and my chest feels a little 'buzzy.' Fatigue and a wave of anxiety might come over me. Short of breath if walking too fast. BP usually shoots up to 148/95, then back to 120/75, when resting/watching my breathing...even lower during sleep and awakening. Used to be erratic and high during the middle of the night but has calmed down there. An upset will easily trigger all this. Or pushing myself physically doing chores. Walking to the mailbox causes it sometimes if I walk too fast. But pulse, even though might show "irregular" on the BP machine, stays around 60. Rarely jumps higher. If I lay around/rest, things stay calmer. Last year these surges went on for hours making me a wreck. Also had loose stools w/them. Not so much anymore. Then the surge wouldn't happen for 3 wks, but always came back. On occasion, BP has jumped to 160/100, but not often. I do think irregular Xanax dosing affected my nervous system, and possibly having come off the seroquel at the same time. Although it was a tiny dose.

The cardiologist prescribed metoprolol in addition to my Sotalol for Afib, but I stopped it when it didn't seem to help much. Maybe I should talk to him again. Checkup due soon. Taking Spiro 25mg. ...had high aldosterone at one point via aldosterone/renin testing. Was told I had labile hypertension from one doc, and even possibility of tiny adrenal tumor by another - but wouldn't confirm. 

Meimeiquest, I will read up on niacin and have just read Dr. Shipko's book. He seemed to think Xanax wasn't any harder to withdraw from than the other benzos, though - and people are telling me that Xanax is the worst. UGH. Thank you for the suggestions and ideas. I don't seem to have Fibro since I'm not in much muscle pain anymore....but have been addressing nutrition pretty heavily the past 3 months to correct some deficiencies. Adrenal burnout is my issue mostly.

Again, thanks everyone. I look forward to your thoughts and input and appreciate what you've shared so far. 

Wondering how to shift my doses timewise, and if taking away from my bedtime 0,5mg dose will cause me difficulty falling asleep again. 

Thank you!

FreedomGirl

 

[FreedomGirl]

Here's my recent dosing changes. Prior to  Jan. 8, my doses were 0.25-0.5 for sleep or whenever waking and not able to go back to sleep.
I soon changed to REGULAR doses, no more than 0.75mg daily.

Jan.8-12th: 
0.5mg at 10pm
0.25mg at 1 pm

Added 3rd dose Jan. 13th: 
0.125mg at 10am (took 0.25 by mistake)
0.125mg at 4pm
0.5mg at 10pm

January 14th - Feb. 4th:
0.125 at 10am
0.125 at 4pm
0.5mg at 10pm

Feb. 5th (went to earlier AM dose):
0.125mg at 8am
0.125mg at 4pm
0.5mg at 10:45 pm
__________________
total: 0.75mg

Hope that helps. Not sure if tolerance is an issue....been taking no more than this for years.
Is it possible to stabilize on 3 doses? Or need 4 to be sure? 
 

 

[Meimeiquest]

I think you'll know it when your dose is right. I'm on a medium-acting benzo and I take it every two hours from 5am to 9pm, last dose is almost 1/2 of total dose. But that's what feels best to me. The only real "rule" is to stabilize before a cut.

[FreedomGirl]

Okay, Meimeiquest. Glad that's working for you! I do think I've learned my lesson about stabilizing. Can't believe all the sporadic dosing i did before, taking only "as needed." But that's what the doc told me to do. UGH. I'll hang here at 3, but thinking about moving to a 4th dose once I figure out how to safely do that. THANK YOU!

I see you take Toprol XL...I used to take that, too. 

[Fizz]

FG, can you tell me what type of diet you are following? I know I need to eat more healthily, however there are so many foods that aggravate my symptoms, have become very limited. I have the adrenaline surges, insomnia, exhaustion and bowel problems. Oh yeah I know the fear of going to bed! Please can you tell me what hormones you are on, I loathe having to take mine. Oh no, only 3 hours till bed. Gonna sleep in the garden. Hugs. Xxxxxxxxxxxxxxxx

[FreedomGirl]

Hi Fizz! I pretty much follow a Paleo-type diet, or ancestry diet as some call it. As much as i can afford, i buy grassfed meats, use only healthy fats (coconut oil, grassfed butter, etc) and entirely eliminate processed foods. I modify it to suit my needs, adding brown rice when I need a bit more carb...and since I was so minerally depleted, I think it's helping. I even boil grassfed beef bones for mineral broth. I gave up sugar a long time ago, but even now when I try to eat a little blackstrap molassses, I get an adrenaline reaction, so guess I can't do sugar even in that amount for now. Magnesium glycinate has really helped my sleep and my nerves but I have to make sure I'm getting enough sea salt and potassium (from food). I had a hair analysis done last year and it showed that I needed to really work on mineral balancing and eventually hope to rid myself of some copper toxicity (which can mimic so many mental issues). It's a process, but you do what you can. I find that a decent night's sleep sets me right for awhile, but I need it every night.

I do think the reason many of us respond differently in w/d may be due to our underlying nutritional status. The better the nutrition, the better chance of recovery. Many days I had to force myself to eat tiny meals 6 times a day, because I kept losing weight, no appetite. It's better now although some days i still don't care to cook and go through the ritual of eating. But i must. 

To help with sleep, I found a few delta wave sleep CDs on You Tube (Jeffrey Thompson) and some body scan meditation exercises done with earphones on..while making sure I get in bed with lights out earlier. If I have to look at YouTube to adjust settings, I make sure to wear my amber glasses to cut the glare of the blue lights from the monitor. Oh, and also lately take only about 1 mg melatonin to help. Epsom salts foot bath or tub bath helps relax me, too. 

I wish you a good recovery, peace, and sweet slumber soon.
FreedomGirl

[Altostrata]

Welcome, Freedomgirl.

 

Please visit this forum for benzo tapering support http://survivingantidepressants.org/index.php?/forum/29-members-only-benzo-tapering-discussion/

 

Also see for possible doctors who might help http://tinyurl.com/7cp8l8v

[FreedomGirl]

Thank you, Altostrata, for the warm welcome and the link for tapering support.

I've looked at the lists of docs in my area and haven't found one suitable. Hope my new integrative MD will be of help. So many of the better docs don't take insurance, I see. 

[Altostrata]

Yes, they can be expensive.

 

Please let us know how you're doing.

[Rhiannon]

Hi FG. I just posted the below on MC13's thread; she's also struggling with Xanax. 

 

You might not need as long a period of stabilizing as she does.

 

I do recommend you get your doses more even (taking the same amount each time) and more frequent. Every three to five hours seems to be what works best for people.

 

*********************

Hi MC13.

 

Unfortunately, this is not primarily a benzo withdrawal forum, so we don't have the breadth and depth of knowledge here that we do with ADs. I do know quite a bit about benzos and Xanax myself but my ability to support is intermittent--sometimes I get too busy with other things and don't get onto the forum as often. We have a members' benzo area, but again, not really the breadth and depth of knowledge there that you'd find for ADs.

 

That said, it sounds like you're doing a lot of things right. You already have a liquid to taper with, check. You're doing multiple doses per day spaced (hopefully) evenly apart, check (although it sounds like you could maybe tweak and improve that a bit). Those are the most important things with Xanax.

 

It sounds to me like your symptoms right now are due not so much to what you're doing every day right now, but to destabilization and withdrawal symptoms from what you've done in the past. Please read through this forum and see if you can find some of my posts about how these drugs affect the neuroplastic brain; I don't have time right now to recap that. The kind of windows and waves, roller coaster symptoms you're experiencing are typical for benzo withdrawal and the kind of autonomic destabilization that going up and down and on and off psych meds usually causes, if not at first, then eventually. (As Alto says, our nervous systems are not made of rubber.)

 

I think your best bet now is to find a dose you can tolerate, and stabilize on it. This is probably going to take a matter of months, not days or weeks, at this point. If you're still getting too much sedation at 0.75 you can cut that down a little, perhaps, depending on how intolerable it is; but at this point you have to balance the benefits of any changes with how they're going to worsen the destabilization that you're suffering from already. 

 

Once you pick a dose, divide it up into about six equal amounts and take that amount every four hours, religiously, around the clock. (You might be able to go with an eight-hour stretch at night.) You want to keep your blood levels of Xanax as smooth and even as humanly possible. After a dose the level goes up for less than two hours and then peaks and begins to drop.

 

Once you do that, it's time to just hang in there and let time do the work. Keep a daily journal ranking your symptoms on a scale of 1 to 5. (This may not make sense to you now, but do it anyway.) You can keep notes in there about external stressors that may have happened during that time.

 

For now, avoid other meds and supplements other than magnesium and fish oil.

 

What you want to do is allow your brain to remodel itself and attain a sustainable homeostatic state.

 

Once your symptom journal shows that the numbers are no longer fluctuating as much, and they seem to have plateaued out at a level you're comfortable with, you can begin a slow, safe taper. You can read about all the tapering suggestions on this forum.

 

Use this time (as I say, from what you describe, I think it will be a minimum of three months, possibly/probably longer) to educate yourself. Read through all the topics on this forum, especially those pinned at the tops of sections. I also recommend reading Anatomy of an Epidemic by Robert Whitaker and the work of Peter Breggin and David Healy.

I don't always agree with everything Shipko says, but he's better than most, I suppose.

 

Good luck to you!

************************************

[Altostrata]

Please folks, take discussions of benzo tapering to http://survivingantidepressants.org/index.php?/forum/29-members-only-benzo-tapering-discussion/