Sarabera: Ready to be free of Elavil after 34 years

[Sarabera]

OOps, that sentence made no sense at all! I guess I was still groggy from all the sleep?? Meant to say zopiclone and flurazepam, plus the midazolam (Versed) from colonoscopy. All these stupid drug names start to sound alike after a while....Slept fairly well, and a more normal amount (8 hours) last nights, so that is good.

[GoodSarah]

Hey hey fellow insomniac- how's it going? Your last post about sleep hygiene/circadian rhythm was pretty positive sounding. Still keeping it up? Thanks for stopping by my thread

[Sarabera]

Sleep seems to be stabilizing fairly well, so that is good. Last night was about 6 1/2 hours, a bit broken up, not great, but oh so much better than 2 or 3. The further out I get from Z-drug exposure, the more comfortable I am. I haven't used the light box for a few days, I've been able to work (outside) quite a bit lately and I think that is the best light I can get. I know things will improve as the days get longer. Hope you are getting some sleep GoodSarah!

 

The Ora-plus still hasn't arrived, may not arrive until the end of the month. As soon as I get it, I'm going to c/o over to a 10mg pill plus 2.5mg liquid and see how that goes. If that goes well I'll start the taper. Or maybe I'll just get tired of waiting and use a water titration to start with.

 

I'm working on getting my diet in tip-top shape now. It's pretty good---a low-carb, moderate-protein, high-fat diet, with very minimal sugar, minimal caffeine, no artificial sweeteners. Probably closest to a Primal diet. Very little grain exposure. Trying to maximize pastured meat and dairy products for high quality fats. I really think it helps for my body to have the right building materials and I've seen good results so far. Can't wait to see what happens when I get off this stupid drug! The things I want to work on (putting them in writing will hopefully hold my feet to the fire):

--More use of pastured/wild meats and dairy (especially work on locating dairy products).

--Start eating an egg every day, especially as my hens start to produce in mid Feb. I think eggs are an amazing food.

--make my own salad dressings, avoid highly processed seed oils.

--get back to intermittent fasting now and then (basically skipping bfast).

--possibly try a week without wheat, which shouldn't be too difficult.

[Sarabera]

So I haven't posted in a while, and I have to admit that things have rather gone backward. My sleeping issues continued to deteriorate, and now I've apparently gotten myself somewhat dependent on flurazepam (a benzodiazephine). I've taken it way too much lately, and it is not as effective as it used to be. That is 7.5mg (half a pill) was at one time guaranteed to put me out, no matter how sleep-deprived or wired up I had become. After alternating for a while between nights of benzos  (up to 30 mg.) and nights of zero sleep, I had to figure out a way to dig out of my hole quickly. For one thing, I was quickly burning through the benzos.

 

I got a referral to a doctor that was within my health cooperative, but I couldn't get in for at least a month, so I made an appt. with a psych nurse. I have no idea why I was so optimistic that they would be able/willing to help me! Perhaps because I lucked out at one time and got a nurse practitioner there that was super helpful, became my doctor for a while, then moved on. The meeting did not go well.

 

(a general paraphrasing)

Me--I want to get off of all the drugs I am on right now (flurazepam and amitryptiline).

She-(looks at dosages)--well if you want to get off these, just quit taking them! (That's when I should have got up and left!)

Me--I can't do that, when I go off amitryptiline I get really sick, if I stop the benzo suddenly, I won't sleep for days! I'm having withdrawal, and need to taper somehow. I need help tapering off.

She--No, it can't be withdrawal, your doses are too low, there is a reason you are on these drugs (original issues.....blah  blah blah). How about trying some other drugs for insomnia- (reels off a whole list of drugs, including all kinds of ADs, melatonin, gabapentin, and even neuroleptics) how about trying one of those?

Me--No--I don't want to be on ANY drugs, I want to at least try being drug free, I just want to get off. Can you at least give me a small prescription of Ambien so I can try and taper off with that?

She--No, I can't prescribe those drugs, you'll have to go back to your GP (then why the heck is she offering me new crap!)

 

She also tried to convince me that my insomnia was related to childhood trauma, and that I needed to go back into counseling. No thanks, had plenty of that. Wanted me to updose my amitryptiline. Why did I even waste my time in there? Why didn't I get up and leave the moment I realized she didn't understand or support tapering?

 

So at this point I don't have a lot of options. I am going to have to updose the amirtyptiline at least for a while, and taper down the flurazepam as quickly as I can, hoping for the best. I'm so sick of doctors. I'm going to totally take things into my own hands at this point, no matter what it takes. Thinking of looking into high CBN/low THC marijuana edibles for insomnia, at least it is legal in my state (I'm not a pot smoker). The only good thing I have going for me right now is that the days are getting longer and brighter, and from past experience, that should be helpful in regards to insomnia. Feeling really frustrated and depressed for the first time in quite a while.

[Songbird]

What a bummer when you find yourself dealing with someone who just doesn't have a clue.  I know lots of medical people still don't understand about tapering ADs, but they should know better than to tell someone to just quit taking a benzo.

 

I know you said you've tried melatonin and it didn't work for you, but what doses have you tried?  Have you tried any really tiny doses?  Often with melatonin it is about getting just the right dose.  For example, if I take 0.25mg or 0.5mg or 1mg it works okay for me, but 2mg goes paradoxical.

 

I know how frustrating it can be.   A lot of this process is figuring out what works for you and what doesn't.  I had several failed tapers before I figured out just how slow I have to go.  It's a learning journey, that's for sure.

[GoodSarah]

Good to hear from you-I've been wondering how you've been doing. I just wish I had something to

Offer!

[Sarabera]

Songbird, your experience with melatonin is quite interesting--I have a very strange reaction. It seems that the first night I get zero sleep (no matter how small the dose), then sleep hard the second, and great for a couple more nights. Kind of wierds me out so I don't use it (plus can't take the zero nights). Perhaps there is a dose that is small enough to actually work?

 

I've actually done quite well the last few days, and hope I'm not jinxing anything. I did up my amitryptiline just a bit to 14 mg., and am tapering rapidly off the flurazepam (1mg down per night). Tonight I'm at about 2mg.--just rough dry cuts. But I've slept at least 7 hours every night, pretty good sleep. Maybe the cold, hard winter is over? 

 

Kind of a bummer to be going the wrong way on amitryptiline, but oh well, what's another month or two?

 

GoodSarah--hope you are doing well! Sometimes stability is all we can ask for.

[Songbird]

Seven hours a night of good sleep is great!

[Rockingchaircat]

I'm copying this from a post  by nz11--so true! (i think I have only briefly gotten past the hypomanic stage at any one time)

 

Consider :

 

The curious phase; Symptom (S) thinking ‘Should I really still be taking this drug after 10 years use’ ‘Why do I feel so numb to life’ Lasts until next docs visit.

 

The enquiry phase; S, Asking doc questions like what the heck is this crap im swallowing anyway. Are you sure this is not addictive? Lasts for one consultation and about two weeks after.

 

The confused phase; S- Unhappy with doctor blitherings and a desire to start to do ‘googling’ 

 

The humiliation phase; S- after 10 mins of googling a sense of horror begins to descend and a tsunami of shear unbelief emerges…..timeframe -after 5 years I am still in it.

 

The urgency phase; S- A desire to tell the doctor ‘get me off this crap!!’ Lasts until next doctor visit and during his predictable kamakazi taper schedule.

 

The uninformed taper phase; S- On the doctors instructions you become drug free within a month often sooner.

 

The hypomanic phase; S- I am so glad I got that poison out of me  ….i feel much more alive. Timeframe about 1 week to 2 months.

 

The crash phase; S – a sense of wanting to die emerges. Occurs about 2-3 months once off the drug.

 

The akathisia phase; S- uncontrolled restlessness and uncontrolled psychological panic suicidality topped off with crying spells. 2-3 years.

 

The doc help me phase; S- a sudden urge to run to the doc / anyone in order to take away the suffering. 2 -4 years.

 

The terror/unimaginable/ I want to scream horror phase; S –PSSD, may last forever.

 

The un-patient me phase; S- A sudden realization sinks in that the doctor has no idea what he is doing, peddling or promoting. Comes on very quickly and may last for the rest of your life. It’s a major paradigm shifting phase. Can be triggered by experiencing full blown ssri withdrawal. Some are incapable of passing through this phase .

 

The im not taking anymore bullsh#t phase ; S- the growing of two antennae, ones called Blinkin and the others called Stupid or BS for short. Growth begins during the 10 mins of googling.

 

The uncontrollable anger phase; S- When the neighbours dog barks one time too many, one is overcome with a desire to nuke the neighbor, the neighbours house and pets. And that family member who criticizes me …oh boy you just started a cold war and the resurrection of the Berlin wall. 2 years maybe 3 years. A desire to say things that people can get put in jail for saying. If not careful collateral damage could last a life time.

 

The out of control manic/psychotic phase; S- A desire to persue self destructive actions and reckless spending and foolish impulsive decision making. 3 4 years...and anytime while on the drug.

 

The I cant take this anymore in the mornings phase; S- A desire to go to bed and never wake up again. 4 years

 

The windows and waves phase; S- windows and waves, years.

 

I am not going to make it phase; S- about 3-4 years.

 

I am outraged about what has happened to me  phase; S writing letters of complaints prolifically ….kicks in at about the 2 year stage…

 

The diarrhea and flatulence phase; S – diarrhea and flatulence , ongoing may last for years.

 

The insomnia phase; S - cant get a regular nights sleep, should resolve itself  usually takes  about 9 years

. 

The OCD phase; S – OCD; usually only realized with hindsight and insight. Maybe 5 years.

 

The chronic fatigue and muscle weakness phase; S - fatigue and weakness, Not sure how long it lasts but i hope it resolves soon cos at 5 years this phase truly sucks. 

 

The I found SA phase; S- Overwhelming thankfulness and relief one is not alone, also a sudden desire to welcome every newbie...with a flood of opinions, Can last a long time and may become  an addiction...after 5 years im still in it. Hoping to taper sometime soon.

 

oh yeah one more ...The i'm getting on with my life phase ; S- forgetting to check in to sa because i have a life to live  ...hopefully kicks in sooner rather than later.

 

There are heaps more but this is just a couple that came to mind!

I am SO stealing this for Benzo buddies.

[GoodSarah]

Hi Sarah how've you been? I've been thinking of you. I'm ok. My neck/ shoulder injury has been an interesting thing in my life. I've had to take flexeril every night for about 3 weeks. It's been helping me sleep but I'm healing up now and will no longer need it so we'll see how that goes. On the plus side I've had a good long break from my other sleep meds since I couldn't take them with the muscle relaxer. I'd like to avoid them all of possible. Stay strong my friend

[Sarabera]

Hi GoodSarah, Thanks for checking in. I'm still in the middle of a benzo mess, so working on that and not hanging out here much. Met with a second psych nurse and that didn't work out either, she put me on clonazepam, upped my amitryptiline, and all of that made me really miserable. I guess I'm really on my own with this.

[Fresh]

Hi Sarabera ,  It's getting difficult to follow what's been going on drug-wise , please could you update your signature?

 

Feb 9:   "I did up my amitryptiline just a bit to 14 mg., and am tapering rapidly off the flurazepam (1mg down per night). Tonight I'm at about 2mg."

Feb 29: " she put me on clonazepam, upped my amitryptiline, and all of that made me really miserable. "

 

You might want to ask for advice in the member's only Benzo forum regarding your flurazepam taper.  The last thing you

need is to create a benzo w/d situation on top of everything.

[Sarabera]

Hi Fresh, Thanks for checking in. I've been hesitant to update signature, or even post for that matter, because everything is really so up in the air right now. I'm still trying to figure out how to deal with the situation I am in.

 

I've suspected for a long time that the amitryptiline has gone paradoxical on me. That is, it is impeding sleep more than it is sedating me. It's very confusing because it can also be very sedating at different times and combos. It appears I've been using the benzo and zolpidem to basically "club" myself over the head and get past the stimulating effects of the amitryptiline.

 

The last psych nurse confirmed that she is not willing to prescribe the long-acting benzos that I can tolerate (but still willing to offer other z-drugs--no thanks!!) So I'm basically in a cold turkey situation on both fronts--no more benzo that I can tolerate, and can't take the amitryptiline as it makes things worse. I'm taking a very low dose (2.5 mg amitryptiline) during the day right now to hopefully head off withdrawal effects, but I'm still in the honeymoon period.

 

Luckily that last couple of nights I have been able to scrap together a few hours of sleep, enough to function, and I don't feel awful right now.

[Sarabera]

Thought I should update where I am at right now, this has been a wild ride! The amitryptiline definitely went completely paradoxical on me. Even 2.5 mg. was causing me issues with my sleep when I dropped the benzo drugs. So I went completely C/T for 6 days. Then my stomach blew up. I tried taking Zantac, Mylanta, Tums, Tylenol, nothing seemed to help, it was really painful. I finally reinstated 1/2 mg. at a time, until at 2 mg. my stomach finally quit hurting. I've been fine-tuning the dose since then--I have to take the amitryptiline in the morning so I can sleep at night, so I don't want enough to make me feel like a zombie, but I need enough so that my stomach will stay settled. At this point, it looks like I'm going to settle at about .75 mg. per day.

 

I made the mistake of taking .75 mg. at 7 pm the other night, and that was a huge mistake! Even that tiny amount was enough to ruin my sleep for the entire night (ended up with 2 hrs of crap sleep). I was shocked that such a small amount could have such a big effect, rather scary. I've completely C/T everything else--all benzos, z-drugs and progesterone, just to make everything really simple. The first week was very hard, felt like I had the flu, but now I am doing okay with the small reinstatement. I have mild allergy type symptoms most of the day, and usually a mild headache, but anxiety, depression, and other psychological problems have not been an issue. I'm very optimistic that I will continue to improve, the worst is hopefully behind me.

 

Once I stabilize on a dose that works (about .7 mg?) I'll start a taper. So glad that the end of this awful drug is in sight!

[Sarabera]

I've stabilized at .5 mg, and actually started my taper this morning--dropping .025 mg per day, taken first thing in morning. The dose is low enough that I don't really feel the side effects. I'm going to see how things go, perhaps hold a bit now and then. Feeling much better--the allergy and flu symptoms have abated pretty much completely by today, and I don't feel unusually tired. No more headaches, so I think my brain has adjusted fairly well.

 

I'm not sleeping great though--only about 4-5 hours a night. It's a lot better than the zero nights I was getting before though, so I am very thankful for what I am getting. I don't have the great fear of not sleeping at all and feeling dreadful then next day much anymore. My body seems to scrape by with enough to function, and I don't feel overly tired until the late evening.

[Sarabera]

Dose of amitryptiline is currently .375 mg. . If I continue at this rate I will be off the drug entirely in about 2 weeks! Sleeping much better, the last three nights I have slept 7 to 9 hours. I had a mild headache yesterday morning, but other than that I don't think I really have any withdrawal symptoms right now. My stomach is just a bit raw today, but I think that is because of eating super hot Thai food yesterday (dumb!).

 

I have to be really careful with stimulants though--a bit of chocolate, or even a cup of decaf coffee in the afternoon, will mess up my sleep quite badly. Hopefully this is just a temporary issue that will resolve over time. I don't want to have to give up chocolate forever!

[GoodSarah]

Yay so glad you're getting some relief! I'm doing ok- I'm off the flexeril for the most part and trying to stay away from the Xanax. There's good nights and bad ones. At this point it's all in the attitude. If I can keep up with the coping strategies I've learned then the insomnia waves are surviveable. Keep us all posted- I was wondering about you

[Sarabera]

At this point it's all in the attitude. If I can keep up with the coping strategies I've learned then the insomnia waves are surviveable.

 

Totally--so much about insomnia is about the attitude! With the right attitude, you can deal with a lot!

Down to .325 milligrams, doing fine. Dreams are becoming quite vivid, which is to be expected, as the AD suppresses dreaming. I also seem to get fairly tired in the afternoon, by 4 PM I am dragging. Hopefully this will continue to improve.

[Rockingchaircat]

I am hoping that it continues to improve for you.

[Sarabera]

Thanks Rockingchaircat, so far so good! I am now down to .275 mg. My sleep has been up and down, but I often get 7 hours or so, and that is pretty good for me. I reinstated the progesterone as I was starting to get hot flashes again. I haven't really had any psychological issues. Feeling a bit tired in the afternoon, but not terribly so. Still grinding my teeth a lot, not sure what is up with that. But overall I'm doing pretty good I think.

[GoodSarah]

So good to hear! Way to go- I'm so glad

You're getting a break. I just went through 2 great months with sleep. It was awesome! The past 2 weeks have been so-so and I feel like I'm moving into a new phase. Hopefully won' turn into a wave. But as we've been saying it's all about cooing and attitude at this point. When you font trough enough ups and downs you realize change does happen. I like to be conscious of times when I sleep well and realize they may not last. But if/when I go through a bad patch I try to imagine there's another window waiting down the road at some point . I don't know when . I've had bad days,weeks, and months. And now I've had a few good months too. The second half of December and all of January were terrible for me sleep -wise. So grateful to have had the best sleep window since this whole mess started.

[Sarabera]

I thought I should come back here and post an update on how I am doing. As of today, I have been off of amtiryptiline for 2 weeks, and I am completely drug free for the first time in my adult life! It feels really great to not even have to think about taking a dose of this or that. My sleep has really evened out now and I'm getting about 6 to 6 1/2 hours every night, usually in two chunks of 4-5 hours, then 2 hours awake, then another 1-2 hours. Not fantastic but definitely livable.

 

I tapered down to .250 mg. via titration with water. At that point my sleep was not great, and I actually updosed for 3 days to .375 mg. It didn't help, so I just decided to jump. If I wasn't sleeping well, what was the point of taking even the tiny dose of amitryptiline? I wasn't even sure it was doing anything. But after I jumped, I was surprised to find that it actually was affecting me, as for several days I had very light sleep, felt sweaty all over, and lightheaded, just like I had before when missing or dropping a dose. So even that tiny little dose was affecting me! After a few days that has faded away, though my sleep is still on the light side.

 

I really feel fortunate in that I don't have any terrible withdrawal symptoms. I haven't had any depression, anxiety or other psychological issues. I think since I haven't had those at all, I'm probably out of the woods by now. My stomach has been rock solid. I can't imagine a reason that I would ever take another tricyclic or AD of any sort for that matter. Hate them!

 

The one withdrawal symptom that I seem to have is uncontrollable bruxism, or movement of the mouth. This has actually turned into quite an ordeal and I began wearing a mouth guard all day and night to protect my teeth. I finally went to the dentist, he found an abscessed tooth, and felt that the abscess had caused the teeth grinding and tapping. I went to get a root canal, the tooth was fractured, so had to be removed. The gums weren't healing up well and the tooth just forward of the removed one was causing me a lot of grief. After 3 more checkups and a round of antibiotics, he ground down the painful tooth and that was a huge relief. But once the antibiotics were gone my gums started hurting again. Now my front teeth are getting sore, and it is becoming quite obvious that I can't seem to leave them alone. Back to the horrid mouth guard again. I really hope this resolves in some way soon, as it has already become quite expensive, and if anyone has any advice on this please let me know.

 

But over all I feel super fortunate to have gotten free after all these years, and looking forward to improved health, and a drug-free future.

[scallywag]

Sara -- fantastic news about being off amitriptyline for 2 weeks.  You'll likely experience windows and waves as time passes, so have a read, maybe a second one, of

The Windows and Waves pattern of stabilization

[Rockingchaircat]

Sarabera, I hope that things have continued to improve for you.