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Hi there, thought Id introduce myself . I am at at home mum,married, with 2 kids 7 and 9.I had post natal depression with my second child and was put on dothiepin(trycyclic) for this 7 years ago. After 2 years tried to come off and stopped sleeping and got anxiety so psychiatrist said to stay on. After 6 years found 50mg I was on too sedating so started opening one of the 2 capsules took at night (GP said this would be ok). After a while developed mystery urinary freq. and ankle pain that came and went and despite tests which were all clear continued not sure what was happening. After another while started getting head rushes which escalated over 3-4 months. Eventually collapsed after a rush one evening and ended up in hospital as knocked myself out as I fell. Had numerous tests for adrenal and brain tumours as well as cardiac stuff - all clear. Asked if it could be the dothiepin and they said no but go up to50mg again, not opening capsules. This resulted in lots of head funnies all the time and I stopped sleeping and got really anxious. Finally GP sent me to medical specialist who thought I was having panic attacks and sent me to my psychiatrist again. She lowered the dothiepin and added escitalopram and I went downhill over a week very rapidly. Back in hospital where they took me off this, then back to psychiatrist who took me off dothiepin and put me onto nortriptilene 75mg and lorazepam (Ativan) (0.25mg at night). I got much worse over 5 months - agorophobic,suicidal, really depressed,tight chest/throat etc which I wasn´t/didn´t have when this all started. Psychiatrist did not listen and upped lorazepam to 0.25mg but 4 times a day now. After another little while she swopped nortrip for amitriptylene, still with lorazepam. Affter 2-3months changed psychiatrists,and the new one thought I was having an allergic reaction to some of the meds so took me off lorazepam over 3 weeks and then amitrip over 2 weeks. Within 3 days of being off amitrip withdrawl started. Have now been unwell for 9 months. I have my dad living with us helping with my 2 kids and house and me, as I am afraid to be alone. Have not had seizures,hallucinations etc but really sore head,jellylegs, vertigo,muscle spasms,electric shocks,pain, feet jerking, eye twitching/blurring etc. In last 3 months have had 3-4 lots of good lasting 2-6 days where suddenly feel almost normal, but followed by full on withdrawl again. Last few weeks changed again - now reallly hyped up and sleeping badly (even with valerian) feels like adrenaline surging and developed eye and facial twitching and head and neck pain & tightness much worse. This is just absolute hell but I am determined to get through. Spend days crying as feel sooo alone. In nz no supports really available - everyone says I came off too fast - not much help when told this 4 months off! Also feel I couldn´t have gone on on them as so terrible on them. Have found a GP who believes me and is supportive, but only in last few weeks. Anyway just need some reassurance as there seems to be no one else to give it!

I have alsojust discovered that the valerian I have taken for insomnia for past 9months also work on gaba receptors (drug counsellor toldme ok totake).  But lots of websites say not. Ive taken 800mg at night first 5 -6 months and 250-500mg last 2-3 months.  Been crap this last 2 months so don;t knowif there is a link.  Decided to drop to 250mg and slowly comeoff.  However dropped 2 nights ago and little sleep and withdrawl symptoms worse.  Maybe this is too big a drop to begin with?  Wondering if go to 8 drops, stabilise and slowly reduce a dropa week over next few months and sounds like you can get withdrawl from valerianalso.  God I am in the crap - feel like im back at square one!  Has anyone had any valerian experiences?  If continue not sleeping whats the story with taking benadry?  I feel like ill have a nervous breakdown if i cant sleep as the days are sooo bad at present.  Although the valerian works realise it has to end,but dont want things to get any worse.  Anyway - what a rant sorry!  your help and support is appreciated.

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Hi Spring!

quite a little history you have.

Maybe I misunderstood, but you are only on valerian now? Off all meds? Also, I don't think you say when you discontinued the lorazepam.

But anyway, you can become tolerent to valerian root, as with other otc products such as benadryl. We usually recommend taking it only a few days at a time, or every two or three days. Or find 2 or 3 different sleep aids, and rotate them, so As not to become dependent on any one.

 

Depending on when you quit the benzo, your GABA receptors are probably still in recovery. Eventually your sleep will return to normal, but you will probably have to work on getting of the otc stuff if it's not working for you anymore. Try taking a break from them, and then see if they work again. But remember to rotate and take breaks. They will work much better that way.

Sleep was my most troublesome wd symptom during and after my taper, but I am happy to say, I know sleep almost normal.

The fact that you were on a lot of meds that were rapidly discontinued is effecting you too. Just give yourself some more time. Believe me, I know how horrible it is to not sleep. But you are recovering, really!

 

Linda :)

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yes been off all meds for 9 months now. only taken valerian and odd parecetomol for pain.  went off lorazepam over 3 weeks and then amitrip over 2 weeks - paying the price!  If only id known - or more like if only my psychiatrist had known!
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One thing I forgot to add, you say you have some good days, then are thrown back in wd. This is very common. The good days are called "windows" and are a sure sign of healing. Try not to get discouraged if they don't last. Soon you will have longer windows, and shorter bad periods
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Hi spring,

 

Having "windows" are a very good sign of healing, the healing is slow but you will get there.  All the symptoms you're having are very normal, getting off these drugs is a nasty business but there is only one way to do it. 

 

I understand how you feel about coming off like you did vs. staying on.  It's the situtation of "hell if you do and hell if you don't," kind of thing.  Drs. seldom know what is best when it comes to coming off, if they give any advice at all it's usually bad.  Mine didn't feel that the drugs were the problem and kept upping the dose and kept me "trying" different drugs.  They give out samples like you are at a ice cream shoppe trying different flavors. 

 

Benadry can cause some symptoms to flare up, especially the restless legs and twitching at night, I can't take it.  I can take Tylenol PM but I only take 1 occasionally. With wd everyone is different, a lot of times you have to see what will or won't work for you.

 

You can do this...it takes one day at a time. :smitten:

 

 

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Thanks for the encouragement - just went and sat at the waters edge near our home withmy7 year old sun who sat and chatted the whole time while holding my hand and I felt that I have to beat this for my kids,even though today just seems too much.  Knowing I can vent and have someone who understands here helps.  Few people really get it.  Many thanks.
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Hi Spring,

 

Welcome to BenzoBuddies.

 

I know 9 months seems like a long time, but try to focus upon the improvements you have made so far. The rest will come right with time.

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Hi & Welcome!!

 

I agree...very few people get it.  Even the people who saw me go through it...don't get it!  The good news is..you will heal from this.  It will take time and determination to get your life back...but you will do it!!  Even after the withdrawal was over...my biggest problem was fear.  Fear of withdrawal coming back, not sleeping, panic attacks...etc., etc.  They all went away and I finally got it through my head they will not come back.  I have completely healed...and so will you!!

 

Love,

 

Jen

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Hi Jen,

Thanks for the support and kind words.  I just pray that things get better than currently soon.  I´ve had 8 weeks now of not functioning well - really hard withdrawls - hard with 2 primary school age kids!  Although my Dad is being an awesome help.  I could just use a few ok days to remind me they can happen.  When were you able to start functioning ok?  I´m not driving and cannot go anywhere noisy or with lots ofpeople.  No shops, cafes and most difficult - not able to see my kids concerts/plays etc.  Haven´t been to church in 8 months either - cannot handle the noise or lights!  I seem to go through long bad patches - up to 10 weeks at one stage - with anywhere from 2 days to a few weeks not too bad in between.  I guess this is because I was taken off over 3 weeks by the psychiatrist.  I assume I will eventually get longer    good periods, shorter bad like thoseof you who have tapered slowly.

By the way - how do you work the smilies above?

Thanks Jen for sharing - it helps to know you got there!

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tapered slowly.

By the way - how do you work the smilies above?

 

Left click in the dialog box where you want to place it.

 

Then left click on the face of your choice.

 

Make sure to leave a space before and after.  :yippee:;):thumbsup:

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Hi, spring (my favorite season in the US!)  ;D

 

Just thought I'd mention melatonin (3mg) for sleep.  I seldom need the 3 tablets that are "allowed" and make a point of not taking it more than 3 nights in a row so it will continue to be effective.  I sometimes take valerian in capsule form during the day for extreme anxiety but never regularly.  Never knew it worked on GABA receptors until I read the posts on the Valerian thread.  It might be good to wean off of it and see if you feel any better.  Sure hate reading that someone can be off  a small dose of benzo 9 months ago and still have terrible w/d.  :'(  Hope you start getting more "windows" soon!

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Hi Beeper,

Sprin :Dg is my favourite season here in new zealand too!  Thanks for info. re melatonin - will look up and try.  Have begun to ween off valerian but will take at least 8 weeks and started camomile tea to try to help but sleep starting to be affected.  Anyone else got any other suggestions of what to try so have 2-3 things to rotate?  Had a reasonable day yesterday but backin full w/d today.  Just have to keep going I guess.   

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Hi Spring,

 

I have seen some people use Calms Forte by Hylands (otc sleep aid), benadryl (may cause RLS), Tylenol PM only when necessary. I'm sure others will be by with some other ideas as there a quite a few that have sleep issues. Have you looked under the insomnia forum? If not, just click the link below.......

 

http://www.benzobuddies.org/forum/index.php?board=83.0

 

 

T2

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Thanks for ideas - cannot get some of these in new zealand.  can only get melatonin onprescription here also.  will have a talk tomy doctor this week.  Have restless legs already so probably won´t trry benadryl.  I got some chamomile tea today to try. Thanks
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Hi Spring,

 

I drink chamomile tea (2 bags) to help with my anxious times. I hope it helps you sleep. Where abouts do you live in NZ. I honeymooned there in 1989. We rented a R/V for two weeks and drove from Auckland to Queenstown with many stops along the way. It is a beautiful country, wish I could come back sometime again.

 

 

T2

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Hey Spring,

 

I just signed up as well. All I can say at this point is: DO NOT TAKE VALERIAN!!

Sure it's OTC and herbal, however I took it for 3 days and the combo with benzo's is hellish.

 

If you bought it already, do yourself a favor and flush it down the loo.

 

Good luck.

 

-Tyler

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Spring,

 

Sorry about my previous post. I'm a newbie and I don't know squad yet.

If Valerian works for you, great. I just had a terrible experience with it.

 

All the best,

 

-Tyler

 

 

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Hi Theresa and Tyler,

Tyler - thatś ok. Have actually used  valerian for 8 months now and works well on sleep but dont want to become depedent on it and yes I do wonder if it has affected symptoms which is why im going to taper off over next month or so. 

Theresa - I´m in Auckland and I agree we do have a beautiful country.  My husband and I are planning to take the kids around the country by motorhome once I´m well as the kids have travelled quite a bit but still have not seen all of the country they are from!  Tried warm milk last night 2 cups and slept well once got to sleep around midnight.  Will try 2 teabags of camomile and see which worka best  - especiallyonce valerian lower.  Feeling quite hyped today that damn adrenaline is still running!  God I prayit ends soon.  Hoping after a year it won´t be so bad.  Have a good day! Spring  x

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