Giulietta

[Rhiannon]

Yep, this is all kind of an unknown for all of us, with the virus thing, but the best thing for preventing catching any virus is honestly, believe it or not, frequent hand washing. Sanitizers are better than nothing but for viruses, plain old soap and running water are really the best. I managed to keep from catching a nasty cold while babysitting my 3-year-old granddaughter last month, for four days straight--I was sure that I was doomed but I didn't catch it. I washed my hands like every time I turned around! 

 

Hugs back to you hon!

[Frogie]

2 minutes ago, Giulietta said:

So glad my legsx have been OK enough to walk on the treadmill for the past few days 🙂

- in spite of the other glitches. So thankful for walking !

That’s awesome that your legs are seeing even a little improvement. I’m also so glad you are able to walk on the treadmill as I know you like to do that. I’m obsessing over my weight right now. But I need to stop.🤣

 

6 minutes ago, Giulietta said:

Also - when ruminating - when I remember - I tell myself I am not a cow, don't have a rumen (spelling?) so to stop ruminating.... 😂

Maybe that’s what I need to tell myself, I’m not a cow, however, right now I feel like one lol...🐂

 

You are a ray of light yourself. Always caring. Thank you.

 

You have a wonderful day yourself 😊

 

Take care,

 Frogie xx

[Giulietta]

2 hours ago, Frogie said:

I’m also so glad you are able to walk on the treadmill as I know you like to do that. I’m obsessing over my weight right now. But I need to stop.🤣

 

I am so grateful when I can walk on the treadmill. Legs were strong today  - but imbalance and dizziness were an issue all morning but not too bad to keep me from walking. 😉 So happy.

 

About the weight thing. I have been having issues with overeating and eating the wrong things. Even eating healthy things (unless high in fiber and low in calories) pounds will go on. Part of this may be a coping mechanism for anxiety and cravings - which then develops a habit. I used to be fastidious about how much I was eating, what, etc. It was causing me a lot of stress - so I decided it was better to relax about it and if my clothes fit - then that would be my guide. That being said - I worry if I lose weight.

 

In addition - which I don't understand - anxiety also drives complete lack of interst in food (although that usually hasn't been my issue. 😉 ).

 

2 hours ago, Frogie said:

right now I feel like one lol...🐂

 

I was going to say that about myself...LOL...especially when I get bloated...

 

2 hours ago, Frogie said:

You are a ray of light yourself. Always caring.

 

So kind of you. It is good to know I am making a positive imipact on people's livees through this.

 

[Giulietta]

2 hours ago, Rhiannon said:

but the best thing for preventing catching any virus is honestly, believe it or not, frequent hand washing. Sanitizers are better than nothing but for viruses, plain old soap and running water are really the best.

 

Officials and medical professionals keep making this point - and I agree it is critical - I do think staying away from droplets in the air is important. 🙂

 

I was at a chain pharmacy today - and 2 others and I were looking for handcreme. My preferred choice - Neutrogena (it's cheap and effective!) - was sold out. Both wanted the same. I am washing my hands so much (99.9% antibacterial) that they are irritated and dry. I thought keeping a moisturizer next to the hand soap was a good idea.

 

Very glad you evaded the grand daughter's cold! How is she ?

[Giulietta]

Good day everyone -

 

I hope you are all in WD normal - or WD acceptable 😉  - I am continuing to focus on having positive outcomes with hand washing, etc. - and not let things I can't control impair my physical and emotional well being and WD healing. 

 

Positive: Legs so far so good. Grateful for this.

Bummer:  Neuroemotions, physical symptoms, and insomnia not so good

 

Dog is being fussy with eating (again). Like many of us he has days when food is unappealing and he won't eat. 😉 This causes me worry since he is light weight and can't lose any weight.  He wouldn't eat yesterday. He's decided he doesn't like his dry kibble with bits of chicken - so this morning he was spoiled with a bit of c hicken broth added for flavor. He lapped it right up.

 

Today's goals:

 

• Keep my head down and focus on small goals.
• Spend less time on SA.
• Get on treadmill
• Do some calisthenics
• Grocery store for salad greens and fresh produce.
• Take dog to vet for regular rabies vaccine and he needs more treats already ($$)
• Practice medidation and legs up on the wall...

 

Maybe that is too much. See how I do.

 

[Giulietta]

Update for nearly end of day - Mar 4

 

Wish I had done better on my goals. 🙁 Too many interruptions and unplanned things. Really mad about that. Deosn't it feel like the day is wasted when you don't meet goals? grrr.

 

On the duloxetine dosage update...

• I have been on .2 mg (1 bead) for 7 weeks. It will be 8 weeks on this Sunday.
• The past 7 days have been 'decent' in that I have been able to walk every morning, albeit carefully on 3 of them. One day with a bit of imbalance (today) and 2 mornings with stiffness and weakness and cramps in here and there. I am grateful for this.  There continue to be a host of other symptoms, including inosmnia and neuro-emotions.

I am afraid to drop to 0 (or do every other day?) How do you know when to go to 0?

 

Am I 'prolonging' my 'suffering' per se since I am already in this state?

 

Thanks for any input...

 

G

 

 

 

[Giulietta]

Ashton Manual. I have looked at this today in anticipation/consideration of tapering clonazepam. 

 

https://www.benzo.org.uk/manual/index.htm

 

In the manual I read about imbalance, muscle pain/weakness, blepharospasm, and other things - which are associated with benzo WD, even if not stated with AD WD that I have seen - but then if I have seen it - I may have forgotton it 😉 .   Excerpts :

 

Muscle symptoms. Benzodiazepines are efficient muscle relaxants and are used clinically for spastic conditions ranging from spinal cord disease or injury to the excruciating muscle spasms of tetanus or rabies. It is therefore not surprising that their discontinuation after long-term use is associated with a rebound increase in muscle tension. This rebound accounts for many of the symptoms observed in benzodiazepine withdrawal. Muscle stiffness affecting the limbs, back, neck and jaw are commonly reported, and the constant muscle tension probably accounts for the muscle pains which have a similar distribution. Headaches are usually of the "tension headache" type, due to contraction of muscles at the back of the neck, scalp and forehead - often described as a "tight band around the head". Pain in the jaw and teeth is probably due to involuntary jaw clenching, which often occurs unconsciously during sleep.

At the same time, the nerves to the muscles are hyperexcitable, leading to tremor, tics, jerks, spasm and twitching, and jumping at the smallest stimulus. All this constant activity contributes to a feeling of fatigue and weakness ("jelly-legs"). In addition, the muscles, especially the small muscles of the eye, are not well co-ordinated, which may lead to blurred or double vision or even eyelid spasms (blepharospasm).

None of these symptoms is harmful, and they need not be a cause of worry once they are understood. The muscle pain and stiffness is actually little different from what is regarded as normal after an unaccustomed bout of exercise, and would be positively expected, even by a well-trained athlete, after running a marathon.

There are many measures that will alleviate these symptoms, such as muscle stretching exercises as taught in most gyms, moderate exercise, hot baths, massage and general relaxation exercises. Such measures may give only temporary relief at first, but if practised regularly can speed the recovery of normal muscle tone - which will eventually occur spontaneously.

 

Problems with balance. Some people during benzodiazepine withdrawal report feeling unsteady on their feet; sometimes they feel they are being pushed to one side or feel giddy, as if things were going round and round. An important organ in controlling motor stability and maintaining equilibrium is a part of the brain called the cerebellum. This organ is densely packed with GABA and benzodiazepine receptors (See Chapter I) and is a prime site of action of benzodiazepines. Excessive doses of benzodiazepines, like alcohol, cause unsteadiness of gait, slurred speech and general incoordination, including inability to walk in a straight line. It may take some time for the cerebellar systems to restabilise after benzodiazepine withdrawal and the symptoms can last until this process is complete. Exercises, such as standing on one leg, first with eyes open, then with eyes closed, can speed recovery.

[Giulietta]

Tapering clonazepam / a benzo -  general questions ...  for anyone who wants to comment. I know a lot of people out there who have done this or are doing it...

 

• Has the Ashton Manual's withdrawal timeline been superseded by the 10% rule?  The manual's timeline suggests stopping 1 mg clonazepam (20 mg diazepam) in a few months if I did that right.   This has to be wrong....
• Manual recommends cross-taper from clonaz to diazepam because of longer half-life of diaz. However - manual also  that where clonazepam is 'stronger' - this cross-taper may present problems for 'some' people. What has gone well here for people?

It is likely this topic will come up when I talk wtih the MD in the next few days...

 

Thanks

G

Edited March 5, 2020 by Giulietta
Correction

[Giulietta]

Good morning.

 

After more reading I think the 10% taper applies ....  My gut told me it was too fast a reduction.  I now wonder if 10% is too fast to start at.

 

10 hours ago, Giulietta said:

Has the Ashton Manual's withdrawal timeline been superseded by the 10% rule?  The manual's timeline suggests stopping 1 mg clonazepam (20 mg diazepam) in a few months if I did that right.   This has to be wrong....

 

I have seen others with the cross-tapre to val. question but found nothing online and wonder what they are doing to have the smoothest ride off....

 

Sorry to be a pest.

 

Thanks.

g.

 

 

 

 

[Cathy4]

13 hours ago, Giulietta said:

Has the Ashton Manual's withdrawal timeline been superseded by the 10% rule?  The manual's timeline suggests stopping 1 mg clonazepam (20 mg diazepam) in a few months if I did that right.   This has to be wrong....

Giulietta, 

Yeah, from what I’ve looked at, the Ashton manual goes way too fast with the taper—I’ve been struggling with even the typical 10% decrease with my klonopin.  I probably need to find a way to get more klonopin so I can go even more slowly, the last doctor I saw wouldn’t prescribe it so I need to find someone else.  
 

2 hours ago, Giulietta said:

 

I have seen others with the cross-tapre to val. question but found nothing online and wonder what they are doing to have the smoothest ride off....

Good question—I know someone on here who switched from lorazepam to diazepam, but it doesn’t seem to be providing much relief at all and I’m not sure it will when it comes time for her to taper, either.  Let me look at your signature to see how much klonopin you’re taking.  

[Giulietta]

Hi Cathy,

 

Thanks for sharing your experience and knowledge. 

 

I am taking 1 mg/day (.25 mg a.m. and .75 bedtime). It is at the top of my sig. I was prescribed this 10 years ago - maybe longer - for anxiety. I was not told it was addictive.

 

It looks like you are on a much lower dose than I am on - and also a long period.

 

12 minutes ago, Cathy4 said:

Ashton manual goes way too fast with the taper—I’ve been struggling with even the typical 10% decrease with my klonopin

 

I looked around the site and saw CTs and a few slow tapers. I also saw reference to Ashton on SA so I am confsed. I don't want any more symptomsdamage than what I am coping with now. I want my life back! 😉 

 

You have my complete sympathy about your struggling with symptoms. When are you scheduled to be off altogether?. Has your MD not understood your difficulty with the rate of taper ?

 

I may have to find a new MD for same reason.  This individual is inaccessible.

 

21 minutes ago, Cathy4 said:

switched from lorazepam to diazepam, but it doesn’t seem to be providing much relief at all

 

She got a bad deal if you ask me - but I don't know hte circumstances. Anothr person is tapering d irectly from ativan - spreading the doses to tid from bid.   a

 

I have an appointment with the prescribe on Monday. I would like to communicate my status and symptoms, plan for the dulox taper finalization, request for 90 day RX and then clonaz taper. or LTG reduction firsts.  Being nrevous about getting enough meds in the future - I want 90 days in case obtaining 30 day doss (as prescribed) is a problem. It has been before.

 

I need a) control and b) access to someone I trust and who knows about this. It's so simple. 🙂

 

I hope you're having a decent day.

 

Hugs,

G.

[Cathy4]

1 hour ago, Giulietta said:

I am taking 1 mg/day (.25 mg a.m. and .75 bedtime). It is at the top of my sig. I was prescribed this 10 years ago - maybe longer - for anxiety. I was not told it was addictive.

Yes, Giulietta, 

I’ve also taken klonopin for longer periods of time in the past 20 years, but each time I was able to go on and off without much of a problem and there was never ever any mention of WD OR addictive qualities.  Same with the xanax.  I did this most recent klonopin taper far too quickly, wanting to impatiently reduce my drug burden.  

My guess would be it would be easier to stay on the klonopin and taper very slowly, rather than switch over to Valium.  I know the klonopin half-life is 18-50 hours, and I’ll tell you that about 8 days into a dosage reduction, I felt a change for sure.  
 

1 hour ago, Giulietta said:

When are you scheduled to be off altogether?. Has your MD not understood your difficulty with the rate of taper ?

I’m not really working with anyone on a taper schedule at the moment.  My psychiatrist, who retired, prescribed benzodiazepines liberally, and I’m looking into seeing an RN who might actually acknowledge WD—my fear of sitting through appointments has been so great that I haven’t gone in.  
The naturopath I had a teleconference session with said she can prescribe sertraline but not klonopin.  I guess because klonopin is a schedule 4 drug?  Or...  I might have the number wrong. 

[Giulietta]

13 minutes ago, Cathy4 said:

guess because klonopin is a schedule 4 drug

 

Hi Cathy

 

It is a C4 (in my state at least. I don't know if this is a nation-wide or state designation). The lower you go the harder it is to obtain - so I was told by my insurance company.  One thing I learned is that in my state - it is legal to obtain a 90 day supply - as long as the MD writes the script. It is just the insurance company has quantity limits on paying for it.

 

16 minutes ago, Cathy4 said:

but each time I was able to go on and off without much of a problem

 

If you are on for brief periods (a couple of months?) at lower dosages it is easier to taper off.  If you were on for a longer period of time (and a higher dose)  before this taper then I  understand this is a more unpleasant process. 🙁 

 

What dose were you on? .25?

 

22 minutes ago, Cathy4 said:

My guess would be it would be easier to stay on the klonopin and taper very slowly, rather than switch over to Valium

 

Why do you think this? I read only that clonazepam is considered to be 'powerful' even though it has a shorter half-life than valium. My gut says no to a x-taper (from my WD state) and then a taper....it may add morre time to the taper process too?

 

32 minutes ago, Cathy4 said:

I did this most recent klonopin taper far too quickly, wanting to impatiently reduce my drug burden.  

 

One thing I ask myself/have asked myself - is that as I am already injured - and living with WD - does it matter to what extent one 'stabilizes' before changing dose or starting another taper?   I am afraid to make decreases, etc. - but as you mentioned - the more I learn about this - I wonder when this might end.

 

33 minutes ago, Cathy4 said:

RN who might actually acknowledge WD—my fear of sitting through appointments has been so great that I haven’t gone in.  

 

I like Nurse Practitioners and NP's - because I think they are more receptive to learning and are not affronted by other our suggstions and knowledge. Most of them seem to be easier to communicate with.  I don't know if they can prescribe clonazepam even though they can (obviously) write other scripts.   I have also not found one who practices outside of a practice where there are MDs.

 

Why do you have fear of sitting through appointments? When in the MD's office you don'thave to make a commitment to anything....? I honestly have made 'plans' but they change them depending on the situation. MDs don't like to change plans but there you have it.

 

Do you know if an osteopath could prescribe? I don't want to schedule anything now. There is too much happening.

 

Big hug,

G

[Cathy4]

2 hours ago, Giulietta said:

If you are on for brief periods (a couple of months?) at lower dosages it is easier to taper off.  If you were on for a longer period of time (and a higher dose)  before this taper then I  understand this is a more unpleasant process

Before this current taper I hadn’t taken klonopin in about 2 years.  The psychiatrist used to prescribe me BOTH xanax & klonopin, but then in the recent past had me choose one of the two.  
 

I CT’d xanax in late August 2019 so I think my system was very destabilized by both that and the too-fast zoloft taper.  
 

I completely agree with what you’re saying above. 
 

2 hours ago, Giulietta said:

What dose were you on? .25?

Typically I was on .5mg in the past, sometimes up to .75mg.

 

2 hours ago, Giulietta said:

Why do you think this? I read only that clonazepam is considered to be 'powerful' even though it has a shorter half-life than valium. My gut says no to a x-taper (from my WD state) and then a taper....it may add morre time to the taper process too?

Yes, though I don’t have experience being on diazepam, I have also read/heard klonopin is more potent.  
 

The reason I say this is because (no scientific backing here) I think there’s a possibility to put the nervous system into even more chaos by introducing another drug, even if it’s in the same family.  It seems to me that because you’ve been on klonopin for a good length of time, your system has adjusted to and knows this drug.  So crossing over might be confusing and I agree, add more time to your taper.  

2 hours ago, Giulietta said:

One thing I ask myself/have asked myself - is that as I am already injured - and living with WD - does it matter to what extent one 'stabilizes' before changing dose or starting another taper?   I am afraid to make decreases, etc. - but as you mentioned - the more I learn about this - I wonder when this might end.

Giulietta, this is exactly what I’ve been spending time thinking about...  I completely understand.  I’ve been afraid to reduce the zoloft and have been waiting to stabilize since October/November.  I finally decided to do a 10% drop a couple weeks ago because I figured “what the heck—my symptoms seem to be changing and I don’t really know what it means to be WD-normal or be stabilized.”  
 

Something I do know is I am feeling better than I was in September/October, so time is definitely helping the healing process.  
 

And... since I dropped a couple weeks ago, I feel BETTER.  I have no idea if there’s even a correlation, but better is better.  
 

2 hours ago, Giulietta said:

Why do you have fear of sitting through appointments

I often have panic attacks in doctor’s appointments.  This has happened throughout my life and there’s kind of a phobia of being in an exam room.  Therefore, my heart rate goes way up, it’s hard to concentrate, and it becomes very stressful.  I used to take a part of a xanax before appointments, but because I no longer have that luxury, I have not been in to get a blood draw or anything.  
 

Thanks for the info about NPs.  Very helpful.  I better make darn certain someone can prescribe klonopin before I make an appointment.  
 

You are almost done with tapering the cymbalta!!!  Wow.  This is very exciting!  🤗

Hug,

Cathy    
 

p.s.  my state seems to be the epicenter for COVID-19.  The long-term care center where many of the cases emerged is about 15-20 minutes away.  A school down the street just closed.  This is not good for withdrawal-anxiety!!!

[Junglechicken]

On 3/3/2020 at 9:22 PM, Giulietta said:

 

I am so grateful when I can walk on the treadmill. Legs were strong today  - but imbalance and dizziness were an issue all morning but not too bad to keep me from walking. 😉 So happy.

 

About the weight thing. I have been having issues with overeating and eating the wrong things. Even eating healthy things (unless high in fiber and low in calories) pounds will go on. Part of this may be a coping mechanism for anxiety and cravings - which then develops a habit. I used to be fastidious about how much I was eating, what, etc. It was causing me a lot of stress - so I decided it was better to relax about it and if my clothes fit - then that would be my guide. That being said - I worry if I lose weight.

 

In addition - which I don't understand - anxiety also drives complete lack of interst in food (although that usually hasn't been my issue. 😉 ).

 

 

I was going to say that about myself...LOL...especially when I get bloated...

 

 

So kind of you. It is good to know I am making a positive imipact on people's livees through this.

 

 

Sorry I missed this G,

 

What brilliant news that you could walk on the treadmill! I hope you can do it more and more frequently.

 

"I hear you" re: the weight loss and diet issues.  WD adds an additional challenge/complexity to it all, due to the development of food intolerances and sensitivities.

 

It's not so much a case of weight loss, but gut healing.

 

Once our gut/brain is happy, ONLY THEN can we contemplate weight loss 🤪

 

I'm speaking for myself, not everyone else.

[sunnysideup69]

Hey @Giulietta, thanks for your kind words. I'm depressed and anxious today. I'm reading back through your updates now...sending you good thoughts and wishes.

 

Glad you've had a decent few days and have managed to walk on the treadmill. Walking is amazing, isn't it? Clears the head, shifts those stuck emotions....sometimes. Going out for a long walk just now allowed me to come home and cry...it's quite a relief.

 

I see you're on 0.2 of the Cymbalta and holding. I'd probably be inclined to hold a bit longer. My own plan re tapering is to not really consider tapering until I've had three good months since my last wave. They don't have to be 'windows' good, but 'WD normal' with only fleeting glitches.I reckon give yourself a bit of wave-free time before dropping to 0.....although I can imagine being so close, it must be tempting to just do it, and be done with it. What do you think you'll do?

[Giulietta]

18 hours ago, Cathy4 said:

It seems to me that because you’ve been on klonopin for a good length of time, your system has adjusted to and knows this drug.  So crossing over might be confusing and I agree, add more time to your taper.  

 

Thanks, Cathy. This reaffirms my thoughts about this option.

 

18 hours ago, Cathy4 said:

 I’ve been afraid to reduce the zoloft and have been waiting to stabilize since October/November.  I finally decided to do a 10% drop a couple weeks ago because I figured “what the heck—my symptoms seem to be changing and I don’t really know what it means to be WD-normal or be stabilized.”  

 

If I recall - I have to double-check - that stabilization refers to after one updoses. But I have to look  more into this or follow up. Some of my physical symptoms have been so bad I could not function and since have had a conseutive 8 days where I can walk (woo hoo!) I am not too anxious to drop in case this is 'healing'.  When I transitioned from liquid to beads in late October - it is possible that the leg problems of Nov, Dec, Jan and Feb were triggrred by this. That being said, when I experinced fewer episodes of this in June (an awful month for WD all around) and in September - I had done cuts of the liquid (dosage unknown). So if the liquid had lower than .4 mg in it - then I would have unknowingly updosed in October. I was makig my best guestimate (long story on my thread - it was an ordeal for everyone...) So it is possible the last few months are stabiliziation I don't  know.

 

18 hours ago, Cathy4 said:

since I dropped a couple weeks ago, I feel BETTER.  I have no idea if there’s even a correlation, but better is better.  

 

Awesome!

 

18 hours ago, Cathy4 said:

there’s kind of a phobia of being in an exam room.  Therefore, my heart rate goes way up, it’s hard to concentrate, and it becomes very stressful

 

The elevation in heart rate and blood pressure has been new since WD in January. I have found in some MDs this has happened - or sometimes it is the result of a previous negtaive exkperience with that MD.

 

After the anger of the WD from cymbalta - and I perseverate when anxious and emotional - so I am a better writer than speaker even though verbose 😉 - I may have been perceived as 'presenting' differently than my usual self.

 

18 hours ago, Cathy4 said:

I better make darn certain someone can prescribe klonopin before I make an appointment.  

 

I just thought of this. I also plan to discuss my goals for mood management with psych meds - and why and how I want to taper.

 

18 hours ago, Cathy4 said:

my state seems to be the epicenter for COVID-19.  The long-term care center where many of the cases emerged is about 15-20 minutes away.  A school down the street just closed.  This is not good for withdrawal-anxiety!!!

 

This is a lot of anxiety for some us in particular. I live near a large city and there are more cases.

 

What could you do that would relieve some of the anxiety?

 

We can't contnrol anything but follow hygeine and stay away from crowds and sick people and kekep our immune system healthy. So I am being more of a hermit and unsociable than ever!  I am watcing as little of news as possible. WASH YOUR HANDS. I hear this all the time. I wash once an hour (when I remember) with dial 99.9% anti-bacterial/virus soap and keep moisurizer next to it. I try not to touch my face. I keep wiping down surfaces and frequently touched things like door knobs, microwave touchpad, etc. I am sure I will come down with the virus in spite of this. 😉  Well, this is the best I can do so helps relieve anxiety.

 

I think some people are confident this is like another type of influenza - which is far more injurious than this thus far by numbers (13M Americans affected since 9/2019 and more than 6K mortalities).

Sorry about the additional anxiety. Maybe my info helps...

Hugs,

G

 

 

[Giulietta]

22 hours ago, Junglechicken said:

What brilliant news that you could walk on the treadmill! I hope you can do it more and more frequently

 

Hi JC,

 

Thanks!  Me too! If I am not able to walk in the morning - for one reason or another - and usually WD - I might not walk later in the day.
 

22 hours ago, Junglechicken said:

Once our gut/brain is happy, ONLY THEN can we contemplate weight loss 🤪

 

Couldn't agree more. 

 

Are you starting the new job soon? I think you signed a contract recently ?

 

G.

[Giulietta]

Hi Sunny,

 

Nice to hear from you on my thread. I your spirits lifted later in the day.

 

4 hours ago, sunnysideup69 said:

Walking is amazing, isn't it?

 

It is, and whether outside taking in the sights - or on a treadmill listening to music - it is really enjoyable. I used to enjoy walking in the woods but don't do much of that any more. There are now a lot of wild animals - bear, coyote, etc. - and I am uniniterested in meeting them.  😉 Glad to have a treadmill and sidewalks!

 

4 hours ago, sunnysideup69 said:

I'd probably be inclined to hold a bit longer. My own plan re tapering is to not really consider tapering until I've had three good months since my last wave.

 

I agree with you about holding - but don't know I like the sound of 3 months. 😉 It is tempting to jump off but I have learned that a miniscule change may wreak havoc. That being said - I am going to play it by ear.  If I didn't have other changes down the pike (clonaz taper, potential reductioni of lamotrigine - plus switching to immediate release of this drug) - I would say - yes - holding 3 mos is good.

 

I'm not sure what the MD will say about the timing of the clon. taper.

 

I hope you are having a pleasant night...

 

Hugs,

G.

[Giulietta]

Hello all

 

By way of a weekly update WD - I had 5 days where I was able to walk. 🙂  Bouts of dizziness and chest/heart pounding overall reduced. Cortisol spikes every morning and broken sleep. Fluctuating emotions and anxiety.

 

Issues this week

#1: Getting extra meds if I need them. Looks like I can pick up one 🙂 and verdict on clonaz is still out. Local pharmacies have had trouble obtaining clon in the past and other AD and benzo may be on the short-supply list.

 

#2 Read a little bit (more than I wanted) about clon, tapering off it (liquids and shaving off a tablet) and staying off it,  long term 'damage' and coping with long term effects - particularly for those of us on these drugs for a long period of time. 

 

The prospect of me using a compounding pharmacy (can't put my faith in this after the dulox experience!) or making tiny cuts myself - is a downer. 😥 That is when I shut down my machine.

 

And I'm going to do that now.

 

I wonder how Gridley's trip went.

 

 

[Cathy4]

12 hours ago, Giulietta said:

Some of my physical symptoms have been so bad I could not function and since have had a conseutive 8 days where I can walk (woo hoo!) I am not too anxious to drop in case this is 'healing'.

Giulietta, this is amazing news!!!  I’m so glad you’ve been able to walk for 8 days.  This is, indeed, healing!!!  
 

 

12 hours ago, Giulietta said:

When I transitioned from liquid to beads in late October - it is possible that the leg problems of Nov, Dec, Jan and Feb were triggrred by this. That being said, when I experinced fewer episodes of this in June (an awful month for WD all around) and in September - I had done cuts of the liquid (dosage unknown). So if the liquid had lower than .4 mg in it - then I would have unknowingly updosed in October. I was makig my best guestimate (long story on my thread - it was an ordeal for everyone...) So it is possible the last few months are stabiliziation I don't  know.

Ohhhh...  oh my, yes, that sounds like quite an ordeal.  I didn’t know you’d switched from liquid to beads—so you’ve been dealing with the leg symptoms since that switch?  
 

 

12 hours ago, Giulietta said:

I

Whoops I made a boo-boo.  I was going to say there are much worse things in life than being verbose!  😊😊😊

 

12 hours ago, Giulietta said:

Sorry about the additional anxiety. Maybe my info helps...

It definitely does, Giulietta, thank you.  I can avoid the news and do some more meditation to help with any additional anxiety.  I very much appreciate your thoughts and info.
Hug back, 

Cathy 

[sunnysideup69]

@Giulietta, wanted ta ask you about sleep and I see you've mentioned it. Asking you as a fellow SNRI- survivor. How much sleep do you get? My sleep, at the moment, is also broken. I think I must get about seven hours on average.

 

The thing I wanted to ask is, do you find you get crazy/ vivid dreams on Cymbalta? Venlafaxine certainly seems to produce them. I know that SSRIs interfere with REM/dreaming sleep by suppressing it and I'm guessing SNRIs have a similar mechanism. From about 4am I seem to be in and out of crazy dreaming....it's worse when I'm stressed, for sure.

 

Do you find the same thing? 

[Giulietta]

8 hours ago, Cathy4 said:

• 8 hours ago, Cathy4 said:

m so glad you’ve been able to walk for 8 days.  This is, indeed, healing!!!  

 

Good day, Cathy,

 

Thank you! I am pleased about this. 😉 This morning was a day of stiff leg muscles (thighs) but could walk in a  straight line and when  carefully.  I find if I lean slightly to the sides or back or turn my head a little too quickly - I lose balance and get dizzy. I wonder why this is.

 

I di dnot not mention in my synopsis of symptoms - but I have had a lot of blepharospam - daily and for extened period.

😉

 

One thing I find that may help is if I focus on it. If I can look in a mirror and just observe it and let it be.Otherwise if I am sitting and don't want to get up I focus on it and let it be.

 

 

 

8 hours ago, Cathy4 said:

so you’ve been dealing with the leg symptoms since that switch?  

 

Good question. The leg/imbalance/acute dizziness escalated after the transition. I had experienced this prior to the transition to beads and schedule below if interested and help to you:

 

• June: 1 day
• August: 4 days
• September: 9
• Oct: NONE but transition to bead on 28th
•  
• Nov + onward....

 

8 hours ago, Cathy4 said:

I can avoid the news and do some more meditation to help with any additional anxiety.  I

 

I check it in the morning and try not to check it otherwise. I look at that as well as the major UK paper Telegraph.co.uk . They seem more transparent and less hysterial but less US information (obviously). Daily Mail  has US information but don't particularly like them.

 

The Brits are aheead of the US government - telling people over 60 to stay at home when possible.

 

It' a pretty day although windy. Bright and sunny.

 

Hugs to you.

G

 

[Giulietta]

8 hours ago, sunnysideup69 said:

How much sleep do you get? My sleep, at the moment, is also broken. I think I must get about seven hours on average.

 

 

Good day Sunny!

 

Good questions on sleep quality, time and dreams.

 

Usual is 6-7. I am not tracking although I should as sleep is really important.  Changes I have found in my pattern is taht I do not wake up at 1 to use the loo. Thi sis helped by not drinking water after 7 p if possible. 

 

I may wake up between 3 and 4 and 5 - sometimes with anxiety and hot.  I am past the age when I would have power surges but an NP tells me this is normal.This happens about 4 times a week. If I am able to go back to sleep at 3 or 4 - it generally doesn't take long but I toss and turn the rest of the night and the waking time is irregular - 5 or 6. I try to stay in bed until 6.30 before arising at 7.  I want to at least get some rest.

 

So total sleep is variable.

 

I also find that somenights I am full of energy, can't settle down and am not tired. Many nights I am tired earlier - as early as 8. Often it is closer to around 9.15.  My sleelp schedule goal per NP is 10 pm to 6 am. Don't do too well.

 

I rarely have (touch wood) vivid dreams.. I have had a few - and I wake up on two of them 'upset' by them. I ask myself if they are trying to tell me something. Are yours this way?

 

 

Hope this he lps you.

 

Hugs,

G

 

[Giulietta]

17 hours ago, Giulietta said:

coping with long term effects

 

Hello all -

 

I happened to come across this article doing something I said I would do less of - look at the news. 😉

 

Excerpted from the article:

 

"...brain aging, and especially dementia, are associated with “hypometabolism,” in which neurons gradually lose the ability to effectively use glucose as fuel. Therefore, if we can increase the amount of energy available to the brain by using a different fuel, the hope is that we can restore the brain to more youthful functioning."

 

I'm going to start counting carbs. 😉 (again. i tried this before).

 

Low-Carb Diet May Reverse, Prevent Age-Related Cognitive Decline

Copied and pasted from: https://www.studyfinds.org/low-carb-diet-may-reverse-prevent-age-related-cognitive-decline/

 

STONY BROOK, N.Y. — You might feel a bit bloated and uncomfortable after a big meal involving lots of bread, but it turns out all those carbs may be slowing down our minds as well. Researchers at Stony Brook University say that following a low-carb diet can seriously help people experiencing age-related brain changes.

Using neuro-imaging, the research team discovered that age-associated brain changes can actually be detected much earlier than expected — in the late 40s. That in and of itself is concerning, but on the bright side, these changes appear to be reversible or preventable altogether by switching to a diet that largely avoids simple carbohydrates.

On a neural level, functional communication between brain regions naturally starts to deteriorate as we all age. This usually starts around the the late 40s (47 years old, to be exact). This process eventually leads to transparent signs of poor cognition, as well as accelerated insulin resistance. After running a series of experiments, the study’s authors noted that these signs of brain aging tend to fluctuate depending on one’s diet.

Essentially, they found that glucose decreases the stability of brain networks while ketones have the opposite effect, promoting stronger and healthier brain networks.

“What we found with these experiments involves both bad and good news,” says Mujica-Parodi, a Professor in the Department of Biomedical Engineering with joint appointments in the College of Engineering & Applied Sciences and Renaissance School of Medicine at Stony Brook University, in a release. “The bad news is that we see the first signs of brain aging much earlier than was previously thought. However, the good news is that we may be able to prevent or reverse these effects with diet, mitigating the impact of encroaching hypometabolism by exchanging glucose for ketones as fuel for neurons.”

“We think that, as people get older, their brains start to lose the ability to metabolize glucose efficiently, causing neurons to slowly starve, and brain networks to destabilize,” she adds. “Thus, we tested whether giving the brain a more efficient fuel source, in the form of ketones, either by following a low-carb diet or drinking ketone supplements, could provide the brain with greater energy. Even in younger individuals, this added energy further stabilized brain networks.”

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To facilitate their experiments, the study’s authors utilized two large-scale brain neuro-imaging (fMRI) datasets consisting of almost 1,000 people between the ages of 18 and 88. In general, destabilization of an individual’s brain network was associated with lowered cognitive ability and accelerated type 2 diabetes. Type 2 diabetes is known to blocks neurons’ ability to metabolize glucose. Next, in order to refine their findings, they scanned another group of 42 adults, all under the age of 50. This additional step allowed the researchers to closely follow the influence of both glucose and ketones on the brain.

The way in which diet influences the brain was tested using two methods. The first approach compared some participants’ brain network stability after a full week of unrestricted eating with another group who were told to adopt a low-carb lifestyle. The regular dieters saw their primary fuel metabolized as glucose, while the low-carb group metabolized ketones.

Another group of people were scanned before and after drinking a small dose of glucose one day, and then again after drinking a dose of ketones. Both the doses were portioned out and calorically matched exactly the same depending on the drinkers’ weight.

All of these measures produced the same results, clearly indicating that the varying effects of the diets are very likely tied to the different types of fuel they give the brain.

Rapid brain deterioration usually takes hold at around the age of 60, but dietary ketosis appeared to be able to improve brain function and stabilize neural networks in individuals under the age of 50. The research team believe this is because ketones provide “greater” cellular energy than glucose, even when the two substances are calorically matched.

“This effect matters because brain aging, and especially dementia, are associated with “hypometabolism,” in which neurons gradually lose the ability to effectively use glucose as fuel. Therefore, if we can increase the amount of energy available to the brain by using a different fuel, the hope is that we can restore the brain to more youthful functioning. In collaboration with Dr. Eva Ratai at Massachusetts General Hospital, we’re currently addressing this question, by now extending our studies to older populations,” Mujica-Parodi concludes.

 

Study is published in The study is published in PNAS. (Proceedings for the National Academy of Sciences of the USA)

https://www.pnas.org/content/early/2020/03/02/1913042117

 

 

[Cathy4]

On 3/6/2020 at 4:03 PM, Giulietta said:

The prospect of me using a compounding pharmacy (can't put my faith in this after the dulox experience!) or making tiny cuts myself - is a downer. 😥 That is when I shut down my machine.

Do you have a jeweler’s scale, Giulietta?  I’m having success in cutting the .5mg klonopin tablets and getting the .112mg that I need.  It takes some time but it seems to work.  The tiniest fragments can be combined and weighed on the scale and then put in a gelatin capsule, too.  
Hug,

Cathy

[Giulietta]

10 hours ago, Cathy4 said:

Do you have a jeweler’s scale, Giulietta?  I’m having success in cutting the .5mg klonopin tablets and getting the .112mg that I need

 

Hello Cathy

 

Thank you for this information.  I need to learn more very quickly about making my meds last long enough to get off. I have 3 months worth (won't know for sure when I pick it up tomorrow!).

 

How are your symptoms today? I will scoot over to your thread and see how you are doing.

 

A lot of anxiety last night - unable to meditate so finally gave up after 45 minutes of trying. Tried putting the legs up on the wall and everything...New symptom since last night - pins and needles on my R temple (maybe goes along with R blepharosm  😉 )

 

Quick PM to you and a few others now...

 

Big hug. May I follow up with you later about the clonazepam taper?

 

g.

[Giulietta]

Hello all - how do I search my thread? I had a  conversation with Shep about discontinuing clonaz and I would like to find it / re-read it.

 

I was unable to figure out how to use the search feature. 🤔

 

thanks,

G.

[Cathy4]

12 hours ago, Giulietta said:

 

How are your symptoms today? I will scoot over to your thread and see how you are doing.

I missed this!  Would’ve answered earlier.  It’s been a not great day, but I really don’t have much to complain about as I was able to walk.  The anxiety returned for me today, along with that awful sick feeling in my head I refer to as “brain nausea.”   

 

12 hours ago, Giulietta said:

New symptom since last night - pins and needles on my R temple (maybe goes along with R blepharosm  😉 )

Gosh, isn’t it such a surprise when a new symptom pops up?  I had numbness in the left side of my face in December—only the left side, and only for a week or so.  So odd.  

 

9 hours ago, Giulietta said:

how do I search my thread

Darn, I do not know...  hopefully someone can help with this.  

[Giulietta]

8 hours ago, Cathy4 said:

as I was able to walk.

 

Huge win!!!!  I can do without the anxiety and headaches and lack of clarity in thinking if that is what you mean.  😉

 

8 hours ago, Cathy4 said:

Gosh, isn’t it such a surprise when a new symptom pops up?

 

It's utterly remarkable. At this point almost nothing surprises me  LOL.

 

Day off to a crummy start. I'm not the only one - but I seem to be like more of a sponge - soaking up everyone else's.  😕

 

 

18 hours ago, Giulietta said:

how do I search my thread? I had a  conversation with Shep about discontinuing clonaz and I would like to find it / re-read it.

 

I was unable to figure out how to use the search feature. 🤔

 

@Gridley @sunnysideup69

 

Hello both -

 

Can you help me wtih the above? Before posting questions - I want to see what info I have.

 

Thanks

Hugs,

G.

 

[sunnysideup69]

Hey @Giulietta,

I'm not totally sure how to search my own thread, to be honest, apart from reading back through it all. I know that's a bit tedious. Do you think you had the convo with Shep before or after Christmas....if it was after, you've at least got less months to trawl through.

[Giulietta]

25 minutes ago, sunnysideup69 said:

convo with Shep before or after Christmas....if it was after, you've at least got less months to trawl through

 

Hi Sunnyside,

 

Thanks for getting back to me so quickly. I hope you are doing OK and had a peaceful-relaxing type of weekend.

 

It is possible it was in Dec or Jan. I have a mind like a sieve. I tried skimming through conversations page by page...and eyes finally glazed over after 30 minutes of fruitless searching.

 

 

[sunnysideup69]

7 minutes ago, Giulietta said:

 

Hi Sunnyside,

 

Thanks for getting back to me so quickly. I hope you are doing OK and had a peaceful-relaxing type of weekend.

 

It is possible it was in Dec or Jan. I have a mind like a sieve. I tried skimming through conversations page by page...and eyes finally glazed over after 30 minutes of fruitless searching.

 

 

I'm pretty sure it was around Christmas, because I remember reading it in your thread. Christmas was the last time I had a proper read through anyone's thread, to be honest. Had a good-ish weekend, but still feeling exhausted.  Today, feeling super anxious again. SO tedious. How are you xx?

[Gridley]

1 hour ago, Giulietta said:

how do I search my thread?

I don't know.  The only thing I wold know to do is think back to when you might have had a conversation with her about clonaz, go back a little further, and then skim. 

[Giulietta]

1 hour ago, sunnysideup69 said:

'm pretty sure it was around Christmas

 

Thanks, Sunny and @Gridley. Yes, it started the first week of Dec but I don't know how to find that in the sequence of numbers (19, 20,...). It doeesn't look like dates are sequential and conveesations jump around by date.

 

Or am I missing something?

 

I'm glad you had a moderately nice weekend.  😉

 

hugs and thanks

G

 

 

[Gridley]

8 minutes ago, Giulietta said:

Or am I missing something?

First week in December starts on your p. 11.  It is sequential.