Giulietta

[Giulietta]

Having a mostly crummy day - not too different than yesterday.

 

• Mornings have bee fine - energy, etc.
• Afternoons I am absolutely exhausted. Mid-day I am overcome with fatigue - it feels like I may have run a road race - I just want to lay down and sleep.
• What is  unsettling is that I felt this way in June and also when I was slippign into a depressive episode and was put on an AD years ago - and may have been prior to starting an AD.

 

What is this all about?

Waht is this and how does one get through it when one feels this way?

 

Thanks - if anyone can give me any ideas -

 

Hugs,

Giulietta

 

p.s. I'm thinkig of you all - just tuckered out....really happy for @Erell's' big step!

 

 

 

 

[sunnysideup69]

Wishing you a better day today, hun...sounds like you are in a bit of a wave and the only way to get through it is to put one foot in front of the other. Small steps. Little bit of fresh air. Healthy food. Rest/sleep. Netflix or a mindless film. Staring out the window.

Sending hugs and thanks for all your kind words on my thread ❤️

[Giulietta]

Dear @sunnysideup69

 

Your good wishes helped - today was better than yesterday. I was the best in the afternoon and now that it is evening I am all wound up. 

 

The deep despair as I think I said on your thread is remarkable in that it is not triggered by any external event or circumstance.  How to bring ourselves out of these holes is something I wrestle with.  What do you find works?  Even doing something you love - or even thinking about it - is untenable. 

 

I am lost in thought. So many goals. Unable to compartmentalize them or focus on any one... 🤔

 

Tomorrow is another day

 

 

 

[sunnysideup69]

4 hours ago, Guilietta said:

Dear @sunnysideup69

 

Your good wishes helped - today was better than yesterday. I was the best in the afternoon and now that it is evening I am all wound up. 

 

The deep despair as I think I said on your thread is remarkable in that it is not triggered by any external event or circumstance.  How to bring ourselves out of these holes is something I wrestle with.  What do you find works?  

 

 

 

I'm glad they helped. 

Yeah, it's a tough one to answer. Distraction, get some light if it's daytime, get some fresh air, watching Netflix, sometimes I just give up and go to bed if I can, even in the day, for a while. Just treat myself like a person with a long term illness.

And sometimes there's nothing I can do apart from let it pass. Ugh. And just trust that recovery will come, because it will. 

I've done a lot of 'looking back' over the weekend, which triggered me a bit, I think. Felt really sad about what I've lost in terms of health. 

Sending you a big hug xxx

[Giulietta]

Dear @sunnysideup69

 

Thank you for your wisdom. 

8 hours ago, sunnysideup69 said:

Distraction, get some light if it's daytime, get some fresh air, watching Netflix,

 

I follow these as well - but try not to nap for fear that I will be up all night (more stress). TV is  a good thing. Being out in the car - even to grcoery store cafe - interacing with othrs might help.  One thing I discovered yesterday is to keep a list of what to do when I am feelimg this way - if I can.

 

8 hours ago, sunnysideup69 said:

And sometimes there's nothing I can do apart from let it pass. Ugh. And just trust that recovery will come, because it will. 

 

Is this feeling of utter depression, despondency - really WD? I am terrified it will not pass. That I will have to go on meds (last thing I want).  It is more than intense fatigue. I remember trying to nap when I felt this way - and I think it made it worse. @Erell did you also say this?

 

8 hours ago, sunnysideup69 said:

I've done a lot of 'looking back' over the weekend, which triggered me a bit, I think. Felt really sad about what I've lost in terms of health. 

 

 I don't even have to look back at logs over the past 14 months. Maybe I will look at what I did do - and what made me so happy and what I accopmlished and learned. And what I am grateful for. Well, maybe this is poppycock as you might exclaim.

 

I think setting even small goals and prioritizing them - and writing them down - and looking at them every day - so when we are able to work on them (which often seems it isn't often!) we can. Well - if oly I could follow my own sage advice.

 

Wasn't able to meditate last night. Seems I fall asleep and  become nauseous even if I try this around 7. How did you do @sunnysideup69 and @Erell...  @mustafa how are you doing?

 

Thank you for checking in on me

 

[Gridley]

3 minutes ago, Guilietta said:

Is this feeling of utter depression, despondency - really WD? I am terrified it will not pass.

It will pass.  Assuming it will pass helps in a real sense and relieves the terror.

[mustafa]

40 minutes ago, Guilietta said:

remember trying to nap when I felt this way - and I think it made it worse

That is true for me too, when I was very sad or stressed, I have a nap but it made it worse yes.

Don't let the idea of this won't pass worry you although I know how difficult is this but i will, my upsetting thing is time. These withdrawals improved for me in 2015 but because we have unwanted psychiatrists who live with us, no any good thing can happen, they won't be happy unless they destroy everything, they made me go back to drugs and waste the 10 months I was off the drug.

Well, when I wake up I feel tunneled memory, when iam withy parents and listen their voices when wake up, I feel they are deep, very deep as if I didn't hear their sound from years, iam still not totally improved, alot of things I can't remember; the name chosen for this forum as survivors is an exact one to describe how we feel.

Take care of yourself dear gulietta.

 

[Giulietta]

9 hours ago, Gridley said:

Assuming it will pass helps in a real sense and relieves the terror.

 

Thank you for the reassurance. Today this feeling vacillated between anxiety and some kind of feeling 'normal' for me. @Gridley how do you get through these feelings of despair? I struggle to stay awake eventhough I am not tired.   What is this called?

 

Dear @mustafa Thank you for your kind message. 

 

9 hours ago, mustafa said:

when I was very sad or stressed, I have a nap but it made it worse yes.

Don't let the idea of this won't pass worry you although I know how difficult is this

 

What do find helps you?  I do things as quickly as I can to keep moving. I believe if I just sit - even to watch TV - I will fall asleep (and in fact may).  It is scary and I hope you are not experiencing this any more.

 

9 hours ago, mustafa said:

when I wake up I feel tunneled memory

 

This is also frightening - and I am sorry you have this so often or most of the time. That things don't seem the same to you and that you can't remember things. The things that you can't remember - are they facts (as in history or math) - or a memory?

 

Yes we are survivors.

 

Hugs  🤗

 

 

[Erell]

17 hours ago, Guilietta said:

remember trying to nap when I felt this way - and I think it made it worse. @Erell did 

 

Hi my dear Guilietta, 

 

Yes, I don't take naps because everytime I did,  anxiety and dépression were worse when I woke up.

 

So I focus on a bedtime routine To get enough sleep : go To bed early with a slight light, relaxing music in the background, read a book, make some sudoku, take time To notice all the positive things in my day ,...

 

Do you have a bedtime routine?

 

Big hugs ❤

[Gridley]

12 hours ago, Guilietta said:

how do you get through these feelings of despair?

I tell myself it is the drug, not me, and then I seek distraction.  Writing on SA helps, taking the dogs outside helps, a walk around the house.  I know it's hard.

[Giulietta]

Dear @mustafa @Erell@sunnysideup69@Gridley

 

I appreciate your comments.

 

These feelings come straight out of nowhere....is that the way  it is for you?

 

Not to whine - but of all the experiences in my life this is among the most painful, fearful, sad, etc.  - right up there with epilepsy and the social isolation it has brought. It brings tears to my eyes to just write abou it. These feelings bring me to a place I fear a return of - and even though it is a 'what it' and 'fortune telling' . Even with CBT one cannot escape the depth of feelings.

 

Sorry to belabor  - I am glad you listened and offer me some ideas. I know we all feel this pain and have these if not worse fears.

 

One still feels so alone and helpless - but not hopeless - a huge distinction that makes us survivors.

 

My distraction list (and change the channel station @Erell) I will grow.

 

5 hours ago, Erell said:

Do you have a bedtime routine?

 

Yes - it is close to yours - try to be off the computer at 7. Amber eyeglasses. Some calisthenics. Maybe relaxing TV. Read. Meditate if I don't fall asleep. Bedtime by 10. The worst days of despair it has been a struggle to stay up to 8.30.

 

What do you keep from falling asleep meditating?

 

I found 3 good links (on SA) on guided meditation - and I fall asleep. They are quite good.   Do you lie down or sit up? I am most comfortable lying down.

 

Love to all and thank you. I may have mentioned this before. It does get me unglued. 

 

Hugs,

Giuilietta 😢

 

[Gridley]

23 minutes ago, Guilietta said:

of all the experiences in my life this is among the most painful, fearful, sad, etc. 

Same for me, right up there with the colitis.  We will all be stronger for having gone through it. 

 

That's a great distinction you made -- helpless but not hopeless.

 

I hope you have a good Thanksgiving.  Ours will be a quiet one, just us and the dogs.  I'm happy with it that way.

[Giulietta]

7 minutes ago, Gridley said:

Same for me, right up there with the colitis.  We will all be stronger for having gone through it. 

 

I am sorry you have lived with colitis. Chronic diseases are not only physically highy unpleasant (understatement) may shape our lives in undesirable ways and impact us emotionally even though we try not to give them that power. 

 

Did you ever particpate in support groups for people with colitis? (if you want tomention)

 

When I was growing up there were NONE for epilepsy. It is relatively recently there are some. In addition - I have tried to live as much as possibly without this impacting my life. Epilepsy still carries a negative stigma. After 40 years I still am not comfortable mentioning this to others - and for the first time have. I take a chance that I will be 'discriminated' against - by friends and certainly employers.

 

That has meant hiding it as much as possible - a stressor all by itself.

 

How did you manage? (if you want to mention)

 

And Happy Thanksgiving to you. I am thankful for your kindness and support to me - and first welcome of me to SA. Best to your family.

 

Quiet one hear. Best way to handle the holidays. I am personally glad when Jan 2 rolls around. 

 

 

[Gridley]

20 minutes ago, Guilietta said:

How did you manage? (if you want to mention)

There really wasn't anything I could do.  No medicine or diet helped.  Prednisone brought temporary relief, but I couldn't take it often.  Occasionally it would go into remission.  About five years ago it started getting worse, and I had surgery, where the colon is removed and a new colon is created out of the last part of the small intestine.  That has brought great relief, not perfect but much better.  And no pain!

 

I know hiding the epilepsy is a stressor.  It's good you can talk about it here.

 

Happy quiet Thanksgiving to you, G.

[Giulietta]

Hello Gridley -

 

Colitis is hard to manage - even as a compliant patient. I'm glad you are pain free. Prednisone one good drug to be off of.  I know people on predisone and must be on it long term (schleroderma for one - there's an ugly disease  - and some for rheumatism).

 

Have a Happy Thanksgiving

 

 

 

 

 

 

 

[MissyE]

On 11/25/2019 at 5:45 PM, Guilietta said:

What is  unsettling is that I felt this way in June and also when I was slippign into a depressive episode and was put on an AD years ago - and may have been prior to starting an AD.

Hi Guilietta

 

Glad to read today is easier  for you than yesterday!! A glimmer of hope.

 

I understand about worrying the original condition is returning.  For me l get stuck in a loop that the anxiety is worse than ever now and there's no way back.  The dread of sinking into depression feels all to real.  I have to remind myself that I have increased anxiety from the medication and subsequent withdrawal, combined with anhedonia.  Thoughts aren't reality.  Whenever l remember l stop, acknowledge the thought accept and let go without getting hooked.  I've been reading Claire Weekes (recommended on SA) and love Tara Brach .  It's incredibly hard work trying to change the habit.  Each time I remember is a tiny victory.  I need much more practice, my mind is pretty dark at the moment.  I'm going to look at more Claire Weekes.

 

Staying up past 7 is a struggle, l have to force myself.  Didn't manage last night.

 

I'm battling with myself to keep a daily journal too.

 

You seem like you have a good tool kit.  Try to do the easy things that help you.  Tiny victories.

 

Love and peace

MissyE

[Erell]

Hi dear friend,

 

About colitis  : I had a lot of colitis during my benzo WD, many times i've been housebounded because of strong gut pain and diarrhea. 

It can help To eat very small meals but several during the day (it is easier for your digestive system).

Maybe you can also notice that (for example, I don't eat onions or dairy  products) some meals provoke colitis and avoid them. But, it is also possible that no diet really helps (there were times while I had troubles whatever I eat).

When I had very painful crisis, I did belly massage with some essential oil of basil tropical, and it did help a bit.

 

As they say, guts are our brain, so it is pretty logical To have issues during WD. I hope you'll have some relief soon. ❤

 

 

About meditation : I never fall asleep during meditation because of restlessness and anxiety, it keeps me awake. 

But : if you Feel that you are going To fall asleep, you can meditate with your eyes open, it works Well too. 

 

I read that it is Thanksgiving : my thoughts are with you in this American particular time, and wish you a Nice evening ❤

(Happy quiet Thanksgiving Gridley!)

[sunnysideup69]

4 hours ago, Gridley said:

I tell myself it is the drug, not me, and then I seek distraction.  Writing on SA helps, taking the dogs outside helps, a walk around the house.  I know it's hard.

 

I must also remember to do this, before I get sucked into that emotional spiral.

I also sometimes (when I remember) catch myself when I'm feeling good and say to myself that 'I'm still in here, somewhere.'

@Guilietta, I understand the nagging doubt about 'is this just WD or is it actually me' re the despondency/depression feelings.....It's definitely WD. I think the evidence for that is how quickly these feelings can come and go, and switch. That speaks to me of dysregulation caused by a drug. I've had waves of mild depression all day today, it's very odd. Yes, these feelings can also hit me out of nowhere eg Sunday afternoon /eve I was really happy, Monday totally in a slump.

Sending you lots of love and good wishes for a wonderful thanksgiving.

[Gridley]

11 minutes ago, sunnysideup69 said:

I understand the nagging doubt about 'is this just WD or is it actually me' re the despondency/depression feelings.....It's definitely WD. I think the evidence for that is how quickly these feelings can come and go, and switch. That speaks to me of dysregulation caused by a drug.

I think you're exactly right, sunnysideup.

[sunnysideup69]

7 minutes ago, Gridley said:

I think you're exactly right, sunnysideup.

@Gridley PS a happy thanksgiving to you too, when it comes

[Erell]

23 hours ago, Erell said:

When I had very painful crisis, I did belly massage with some essential oil of basil tropical, and it did help a bit.

 

@Guilietta : just a quick note : i'm sorry, I may have given you a bad advice (just thought about this today). I forgot about epilepsy : you should know that some essential oils are not recommended for people who have epilepsy, as they can be too sensitive.

 

Big hugs ❤

[Giulietta]

Dear all,

 

@Erell@Gridley@sunnysideup69@MissyE

 

Your thoughts give me hope and relief.

 

That I am not the only one coping with this - and that these feelings which are terror for me - are part of WD.

 

22 hours ago, Gridley said:

I think the evidence for that is how quickly these feelings can come and go, and switch. That speaks to me of dysregulation caused by a drug.

 

I have wondered about this too and good to have it validated.  I am grateful for your comments and ideas to compensate.

 

22 hours ago, sunnysideup69 said:

Yes, these feelings can also hit me out of nowhere eg Sunday afternoon /eve I was really happy, Monday totally in a slump.

 

Within an afternoon I experience anxiety and despair and normalcy - and sometimes feelings of depression most of the day- as I have in years past. However - I do remember the days of anxiety in acute WD - nearly all day.

 

I have been having more auras - related to my epilepsy - that may be daily, more frequent and more intense - and vary in how they feel. I hope they stay as sensory only. If  I become too uncomfortable I need to take an ativan tablet. What is intrsting is tht these may present themselves with or without anxiety.  This is diferrent thatn IBD - which may affected mostly by anxiety and has been worse. @Erell I try high fiber to help. Massage too. We have something here called metamucil. It has psyillium in it - and you must follow the instructions and drink a lot of water. This is good if you need more fiber. Flaxseeds are also helpful. And there is int he gut/brain axis so diet only helps so much.

 

@Erell Thank you for the tip on meditation. I will try this with my eyes open. Do you sit up or lie down?

 

Thank you all for Thanksgiving wishes!

Thanksgiving is the 'biggest' most important holiday for Americans. I think we celebrate that the Dutch who came here for financial reasons and the Puritans (religious migrants) who escaped persecution in England managed to get along and stay together (through the 'social compact') - they realized they needed each other - and we all survived together - and made friends with the natives.

 

The current day reality is that for some people they travel far and wide to see family - and then many of them spend time arguing over something during the special dinner. We had a small gathering and everyone got along well. I spent 2 hours picking up the mess (I don't enjoy this but it is better than cooking. I did this out of love for others. It is my contribution.)  We had a ham dinner. The usual dinner is Turkey and there are unpleasant side dishes like yams. The best part is PIE. There are several types if you are lucky and if you have a big gathering. Apple, Pecan, Mincemeat (someting I don't care for - but made from raisins I think), Squash, Pumpkin. We only had apple this year. I am grateful for one pie and don't need the extra calories anyway.

 

I think our friends in Canada celebrate Thanksgiving around this time of the year.

 

Thanks and hugs toyou all,

 

Giuilietta

 

 

 

 

[Erell]

Hi dear friend 

 

I practice méditation lie down, I found it easier To focus. 

 

How are you doing these days?

 

Big hugs ❤

[Giulietta]

Coucou mon ami,

 

I practice lying down too. It is more comfortable for my back and in general easeir to focus because I am more comfortable.

 

Do you do this at night when it is darker or during the day?  i find it easier to fall asleep when it is darker but day time is harder to relax.

 

What helps you?

 

I am still struggling with this. Is htere a link you like for guided meditation?

 

Will post on how I am doing. Thank you for asking, dearests Erell.

 

Hugs,

G.

[Erell]

44 minutes ago, Guilietta said:

Do you do this at night when it is darker or during the day?  i find it easier to fall asleep when it is darker but day time is harder to relax.

 

What helps you?

 

I am still struggling with this. Is htere a link you like for guided meditation?

 

- I practice exercices during the day (mindfullness on Breath), and I do the bodyscan since 2 days before falling asleep I noticed it helps me To relax

- Honestly,  there is nothing that helps me in particular. For example, last weekend I was in such a dark place that I didn't manage To meditate.

- I found audio-guided méditation that helps me to practice, but it is in French...do you want me To send you the link even if it is in French ?

 

Big hugs my friend, thank you for your supportive presence ❤

[Giulietta]

13 minutes ago, Erell said:

I practice exercices during the day (mindfullness on Breath), and I do the bodyscan since 2 days before falling asleep I noticed it helps me To relax

 

Focusing on the breath and closing my eyes is helpful if I can manage to keep still - not think. "just be" as my instructor says to me.

 

I am glad ythe bodyscan helps you relax. I listened to eckhart tolle he has a relaxing voice.

 

Yes I would love the link in french. you have to listen to english all the time. french is such a pretty language.

[Erell]

 

;))

 

[Giulietta]

Thank you @Erell. I will try this today or tonight. I hope you are doing better with anxiety. I will check on you later if I am feeling better.

 

As a general post - since Monday my wave has continued. Monday a lot of anxiety and a lot of auras. Tuesday was surpringly decent (hoorah!) - about ''wd normal." Yesterday was a lousy day - auras starting late morning and worsening throughout the afternoon. A lot of GI pain and other anxiety issues. Anxiety last evening and night and waking upw ith it. Wondering what to do to break away from it now. It is about a 7-8 instead of 3-4.

 

Yesterday was ont he verge of calling the neuro or taking ativan. I did not want to do either - or continue with the auras.  I have no idea what neuro would say as she is new to me. I am vacillating on taking an ativan tablet (or two) to quiet these down - I don't want to as Clonazepam is to be my next taper so I don't want any ativan which even prn!

 

I hate having a seizure disorder. It really isn't fair. Neither is diabetes or colitis or any of this other garbage. I often say that pain teaches us compassion (CBT) - but to be honest - I think I have a lot of compassion to go aroundn already.  😕

 

My gratitude: it's not snowing and the sun is out (big wins!), I have a wifi connection, i am warm, and for the moment I am feeling OK - just blah and down about this.  I know we all are so I can take comfort in that I am not alone.

 

Hugs to all on the Survivor Yacht

Giuilietta

 

 

[Giulietta]

Hello all and thank you in advance for your opinions/advice on this:

 

I have a request for information concerning potential dependency on my use of  ativan to manage intense auras associated / part of my epilepsy.   I am prescribed .5 mg ativan prn by neurologist to manage intense auras before they turn into seizures.

• At what point in time (if that is a good way to look at it?) does .5 mg (or 1 mg if I need two tabs) ativan, when taken prn,  cease to effectively stop auras from turning into seizures and  I become dependent on it? Is this 2 weeks? a month?  Ever?
• Will this impact my future (date TBD) taper from clonazepam?

 

Note: I take clonazepam for anxiety (prescribed by psych who also prescribes the cymbalta) and ativan prn for seizure control.

 

If useful - I have provided additional info below. I have tried to anticipate questions and organize information as best as I can.

 

My use of ativan (which  I track)

• February 2019 (1.5 mg one night - then ER visit via ambulance)
• Occassionally in previous years (2018 and before - may be months between one or two tabs)
• In 2014 - during transition to lamotrigine qid for 3-4 mos
• In 2011 or 2012 year - transition from lamotrigine to a tegretol analogue qid for 3-4 mos

Why the question:

• I have experienced many auras over the past 2 weeks - some very acute but I have  managed. Monday (just the afternoon - 5 hours) and Wednesday (10.30 a.m. - 4 pm) were more acute and I barely managed to avoid ativan on Wed.  Auras started before a lot of anxiety got involved. Managing the anxiety (I know necessary) I can manage -  but not the auras. In spite of these efforts, the auras don't go away.
• For example, if I took .5 mg (or 1 mg)  on Monday or Wednesday afternoon - how soon does my body become dependent on it?
• During these periods with intense and prolonged auras - I listen to my body so I know if/when I really need ativan.   I can dno to distract myself or stay near the phone to call the MD or 911. Did this in Feb 2019 and took 3 ativan. 2 would probably have sufficed. I don't know whether panic or auras started first.
• Note that most of my auras are pesky, nuisance things that I live with and there is no interest of ativan.

Why I have ativan prn:

• Avoid having a seizure. Previous experiences (although on different AEDs) indicated that these auras presaged seizures - teenage years. So - based on medical history and similarity (feelings/motor)  if the auras are not stopped at some point I believe they will become a full seizure.
• Why care about having a seizure: physical, cognitive and emotional impact and likely hospital stay.
• Life changes. Losing my driver's license for about a year - maybe more. This means I am without transportation and independence. I don't live near public transportation nor could I  afford to move to a city.
• The neurologist prescribes ativan .5 mg prn to manage these auras when they are intense, strong sensory and some motor involvement (twitches, sensation of pulsing....), the apparent possibility of a seizure . Although I take a high dose of seizure meds, I still have auras and am told 'we just can't rid of them. You have to live with them.'

Why I resist taking ativan:

• because of its addictive nature 
• I need it to 'work' when changing seizure meds without needing higher dosages  - or maybe that doesn't make a difference given its use is for seizure management
• it no longer makes me tired when I take it so I wonder if it has lost some potency
• After getting off duloxetine - I will have to get off clonazepam. I don't want another benzo to worry about.

Thanks everyone. Look forward to hearing from you when you can.

 

Be well.

Giulietta

 

Edited December 6, 2019 by Guilietta
Addition of information

[Rhiannon]

Hi G--

 

Can you ask your pharmacist how long Ativan and its metabolites stay in your body? I think probably if you space dosages out so that it's all eliminated before you take another one, you are less likely to develop dependency. Benzodiazepines are, I think, okay in situations like yours (for seizures) as long as they are only used rarely. It's when taken regularly that they produce dependency.

 

I don't really have advice because I don't know much about epilepsy. Is there an online forum or other resource you can access to talk to other people who have experience with using benzos for this and avoiding dependency?

 

I do think you need to take care of yourself, and everything you are saying makes sense. I mostly just want to tell you that I appreciate you and your courage. Hang in there.

 

Hugs-

Rhiannon

[sunnysideup69]

Hello Guilietta, Just home from work, soon going to rest, wanted to wave hello before I eat and sleep, sending hugs xxx

[intothewoods]

Guilietta, my heart goes out to you. When you told me yesterday about the auras, I haven't stopped thinking of it, especially ganged up with the other challenges. You are amazingly strong and we all feel your courage and strength. And the way you detail everything to make it easier for others -- such kindness. It will be ok. 

So glad @Rhiannon is in your corner. 

 

Sending hugs from down south 🤗.

[Shep]

17 hours ago, Rhiannon said:

I don't really have advice because I don't know much about epilepsy. Is there an online forum or other resource you can access to talk to other people who have experience with using benzos for this and avoiding dependency?

 

@Guilietta  This is sage advice from Rhiannon. If you haven't already done so, please do join a forum or support group for those experienced with epilepsy. You may even want to seek out information on holistic care to see if there may be other treatment options that don't involve pharmaceuticals. For example, I've heard about the ketogenic diet being an option for some people with certain forms of epilepsy, but that is far beyond what this forum can provide information on, but it may be something you can research. 

 

19 hours ago, Guilietta said:

At what point in time (if that is a good way to look at it?) does .5 mg (or 1 mg if I need two tabs) ativan, when taken prn,  cease to effectively stop auras from turning into seizures and  I become dependent on it? Is this 2 weeks? a month?  Ever?

 

It may help to explore the half-life of Ativan. This is a half-life calculator:

 

Drug Half Life Calculator

 

According to the Benzodiazepine Equivalency Chart, Ativan's half-life is 10 - 20 hours. 

 

If you took .5 mg of Ativan and are metabolizing it at the 10 hour mark, it would take 70 hours (2.92 days) before the drug is completely out of your system. 

 

If you took .5 mg of Ativan and are metabolizing it at the 20 hour mark, it would take 140 hours (5.83 days) before the drug is completely out of your system. 

 

You can become dependent on a benzo in 2 - 4 weeks, and there are people who've become dependent in only 10 days, if you read the larger benzo forums such as Benzo Buddies. Even periodic use can cause dependency, so you may want to go with the 20 hour mark as your default guide to how often you can take the drug just to be on the safe side.

 

20 hours ago, Guilietta said:

Will this impact my future (date TBD) taper from clonazepam?

 

Let's look at a couple of issues:

 

1. You may already be dependent on a benzo. Depending on how often you need to take the Ativan, it may have a "rescue dose" effect during your future clonazepam taper, meaning it may bring you temporary relief not only from the auras, but also from benzo withdrawal syndrome from the clonazepam, so you'll need to keep careful drug and symptoms notes so you don't continue tapering the clonazepam thinking you have less symptoms when it may be the fact that the occasional Ativan is covering up the clonazepam withdrawal symptoms. 

 

During your clonazepam taper it will be good to hold the clonazepam longer whenever you need an Ativan. We can go into this with more detail when you're ready to taper the clonazepam. As you go through the clonazepam taper, the symptoms you experience with any periodic use of Ativan will likely provide you with more answers about how your mind/body is able to process this drug with the decrease in clonazepam. 

 

I would advise a micro-taper off the clonazepam due your pre-existing seizure disorder. You'll want to go slower than most people, even if you're not having a lot of withdrawal symptoms, because you'll want to treat your GABA system very, very gently so it can handle the ongoing use of Ativan in the years to come. 

 

HOWEVER, please keep working with the neurologist who is treating you for seizures. We are not medical experts here, so you'll need to stay in touch with the doctor who is treating your seizure disorder. All we can do is give you some best-practice advice for tapering and information on long-term use of psychiatric drugs. 

 

2. You may suffer from the long-term impact of benzo use, such as cognitive impairment, increased episodes of depression (benzos are nervous system depressants) and other health issues arising from long-term use of this class of drug. So you'll need to weigh the pros and cons of staying on a benzo long-term, even with periodic use. 

 

During and after your clonazepam withdrawal and recovery, benzos (regardless of which one), may not have the same effect. Benzo withdrawal is notorious for causing paradoxical reactions and making us hyper-react to benzos, other drugs, and even certain foods. 

 

Again, these are things we can discuss more when you're ready to taper the clonazepam. You may do just fine on your clonazepam taper and your GABA receptors may tolerate an occasional Ativan. We cannot predict this in advance, so please do as much self-care as you can and bring in those non-drug coping techniques to help you stay calm and strong during all of your tapers. 

 

 

20 hours ago, Guilietta said:

Life changes. Losing my driver's license for about a year - maybe more. This means I am without transportation and independence. I don't live near public transportation nor could I  afford to move to a city.

 

I hear you on this. This is a very important factor. More and more people are working remotely from home, so if you decide to go a non-drug route and to make life changes, would this be an option for you? 

 

More and more options are out there now for having groceries delivered, using apps to have Lyft or Uber provide transportation, or the use of a taxi from time to time. Some things to consider as you do research into how you can best manage these health concerns and still have a quality life that allows you to work and to stay involved in your community. Both are important for a quality of life in the long term. 

 

All of this should go into your decision of which drugs you can taper and those you really need to stay on. Of course, a lot of this will depend on how you're able to tolerate Ativan during and after the clonazepam taper, as well as how often you need to take it. 

 

20 hours ago, Guilietta said:

it no longer makes me tired when I take it so I wonder if it has lost some potency

 

Please check the expiration date. For folks using periodic benzos, sometimes one bottle can last a very long time, so make sure your pills are within the expiration date. 

 

20 hours ago, Guilietta said:

Although I take a high dose of seizure meds, I still have auras and am told 'we just can't rid of them. You have to live with them.'

 

Since there are so many seizure drugs being used for so-called "mental illness" reasons, please list the drugs you take solely for seizure reasons and those that are for psychiatric reasons. 

[sunnysideup69]

@Guilietta, just now properly read your post about Ativan. Wow, you are dealing so admirably with such a lot, I really admire you. 

Can't believe how dark it is here at 4pm. Hows your snow situation??

[Giulietta]

Dear @sunnysideup69@Rhiannon@Shep@intothewoods@Gridley

 

 

Thank you all so much for sharing your expertise on benzos tapering, the lingering effects of it after competing a taper, even if I can in my situation (medical advice is contradictory on whether this is even prudent for me), etc. - AND your support. I know it has a sedating effect - but at this point - it seems I am on it so I don't go into WD if I understand correctly.

 

I will read and digest everything properly later today - or more likely tomorrow.

 

@Rhiannon I picked up on your expiration date question for ativan right away and I will check today. Ativan doesn't seem to retain 'integrity' as long as clonazepam does. It seems to disintegrate somewhat rapidly. I store at room temperature - and what is carried in my purse at all times is whatever ambient temperature is.

 

Thankfully I have felt better yesterday and thus far today. I am thankful. WD has exacerbated this for sure. I decided that the misery and anxiety/panic fear quotient coupled with the seizure risk - means I will not rule out use of ativan tablet.

 

Again, thank you, hugs and great respect for you all of you.

 

More later,

Giulietta

 

💗 🤗

 

[Giulietta]

Dear @sunnysideup69@Rhiannon@Shep@intothewoods@Gridley

 

Today: Quick note After a brief respite from WD normal - this morning started out with incapacitating dizziness, imbalance and weak legs - from 8-11.30, diplopia, head turns, foggy thinking and even trouble to balance myself sitting on a chair! It seemed my  glutes didn't want to work .  Exhaustion after that and not wanting to do things that are important to me. I missed church this morning - so I was not happy about that.  I will take the dizziness over the significant auras that being said. 

 

I finally looked at your wonderfully informative messages. I also looked into benzos and appreciate @Rhiannon 's suggestion and @Shep to wait 20 hours (if I need to take another) tablet.

 

On 12/6/2019 at 1:54 PM, Rhiannon said:

I think probably if you space dosages out so that it's all eliminated before you take another one, you are less likely to develop dependency. Benzodiazepines are, I think, okay in situations like yours (for seizures) as long as they are only used rarely. It's when taken regularly that they produce dependency.

• Shelf life is about a year.   I forgot to ask about metabolites.
• Occasional use doesn't seem to be habit forming. Based on that and seizure likelihood (or what I perceive) and what I can withstand - I decided I will take an ativan.
• Depending on the route to take with clonazepam - ativan may likely be needed. As benzos as (now) known to be dementia - the prescriber who is a resarcher on alzheimers wants me off this drug. I don't know what the neuro thinks. They don't like rocking the boat if their patient is stable.

 

On 12/6/2019 at 6:43 PM, intothewoods said:

And the way you detail everything to make it easier for others -- such kindness. It will be ok. 

 

Thank you @intothewoods. I am glad the details are helpful for others and to have your reassurance. Working tnowards positivity. 

 

On 12/7/2019 at 7:55 AM, Shep said:

If you haven't already done so, please do join a forum or support group for those experienced with epilepsy. You may even want to seek out information on holistic care

 

Thanks to you and @Rhiannon. Although I have been in touch with the local group I am  an outlier for a number of reasons. It is a good idea to ask them about other pesons with epilepsy who have been on benzos. Interestingly there are mixed numbes out there about % of persons with epilepsy with mood disorders (anxiety or depression).

 

On 12/7/2019 at 7:55 AM, Shep said:

Even periodic use can cause dependency, so you may want to go with the 20 hour mark as your default guide to how often you can take the drug just to be on the safe side.

 

Thank you for this information. I will plan accordingly in the event I need to take any.

 

On 12/7/2019 at 7:55 AM, Shep said:

Depending on how often you need to take the Ativan, it may have a "rescue dose" effect during your future clonazepam taper, meaning it may bring you temporary relief not only from the auras, but also from benzo withdrawal syndrome from the clonazepam

 

Thank you for this info. This is one of the reasons I do not want to take the ativan.

 

On 12/7/2019 at 7:55 AM, Shep said:

I would advise a micro-taper off the clonazepam due your pre-existing seizure disorder. You'll want to go slower than most people, even if you're not having a lot of withdrawal symptoms,

 

Quite agree. Due to the now known unfortunate finding of benzos linked with dementia - the psych wants me off faster rather than slower. That is a nice idea but really a dumb one I think.

 

On 12/7/2019 at 7:55 AM, Shep said:

Again, these are things we can discuss more when you're ready to taper the clonazepam. You may do just fine on your clonazepam taper and your GABA receptors may tolerate an occasional Ativan.

On 12/7/2019 at 7:55 AM, Shep said:

I would advise a micro-taper off the clonazepam due your pre-existing seizure disorder.

 

@Shep Thank you for the information you have offered and willingness to educate / advise me on a taper in the future. I had not realized the additional lingering effects (in addition to potential cognitive impairment). As I mentioned - the psych wants to take me off clonaz and the neuro I don't think cares to (neuros are focused on stable seizure control - as am I - although I'd like to keep my wits), short-term memory and many other cognitive functions.

 

 

 

 

On 12/7/2019 at 7:55 AM, Shep said:

Please check the expiration date.

 

The shelf life (per pharmacist) is 12 months. I toss mine every few months and replace with a new bottle because I don't want to lose potency. Is this really 12 months?

 

I don't know that I agree with this since I have found lorazepam tabs to be 'soft' and disintegrate easily (when hitting the side of vial or in the pill case). It does not have the structural integrity (I don't know elese to say it) like clonazepam.  I keep it in a cool, room temeprture place as directed.

 

On 12/7/2019 at 7:55 AM, Shep said:

I hear you on this. This is a very important factor. More and more people are working remotely from home, so if you decide to go a non-drug route and to make life changes, would this be an option for you? 

 

I am not a candidate for non-drug treatment of epilepsy, sorry to say.  😢  I am fortunate meds controlled my seizures as well as they have. I would like to reduce the meds (again).  It didn't work out int he past but I'd like to try it more intelligently the next time (10% or slower a month - micro taper). I will  not risk jeopardizing seizure control.

 

The telecommute option (part-time) is what I would like to pursue. It is less stressful - and stress makes seizure control and auras worse.  It would provide some social contact and also enough time alone. I am trying to grow my social circle as hard as this is. As @sunnysideup69 said, I feel like crawling into a hole a good amount of the time.  I have very limited ability (and interest!) in expanding my social circle now.  Like many folks on here - I tend to be self-isolating - WD or not.

 

Will draw distinction for seizure control & mood management on signature.

 

@Shep I am  in prolonged withdrawal and I am not interested in starting a clonazepam taper until I am back to 'normal.' I don't how how long this will take. I have 7 more weeks of beads before I am fully off (I am at 2 beads for one more week).  That being said - I did a mostly CT in Dec 2018 from duloxetine.  What time frame would you think appropriate to start this?

 

I haven't looked at the benzo buddie forums to see any horror (or success) stories. I'm not ready for that. @Erell has kindly assured me that it is not as bad as her current adventure with paxil.

 

I will post separately as this is terribly long response, but I wonder what types of questions I would ask the neuro and psych.

 

I thank you all so very much.

 

If I can answer any questions for you about epilepsy, meds as used to treat epilepsy - I will answer if I can. 

 

Hugs,

Giuilietta

 

 

 

 

 

 

About clonazepam

• Clonazepam has half-life of 17 - 60 hours. That is best pharmacist could give me. Didn’t know why the great variation - suggested based on individual variation.
• Shelf life is about a year.
  • 1mg dose of klonopin (clonazepam) lasts for about 8 hours. The half life seems meaningless if it only therapeutically works 8 hrs.But, therapeutic levels represents a blood concentration that is high enough to see the effect of the medication still working. Blood levels of the chemical/drug/medicine are detectable but not at a level to provide with the well known effect of the medication.
  •  I don't know what this actually means for long-term users.
  • Source: HealthTap, https://www.healthtap.com/user_questions/1153761-1mg-dose-of-klonopin-clonazepam-lasts-for-about-8-hours-half-life-18-60-hours-the-half-life-seems