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Guilietta
2 minutes ago, Gridley said:

Here's the Amazon link for .3mg

 

 

Thanks. I buy my other supplements via Amazon. The pharmacies don't have much of a selection - even the 'Vitamin Shoppe' does not carry what you need.  They only have big price tags.  😉

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Gridley

That the one bad thing about Ecuador--getting products.  The mail service is virtually nonexistent, and individuals can't import supplements anyway, only pharmacies.  We have to order from Amazon, send the products to a shipping service who "mules" it in.

 

 

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Guilietta

 

1 hour ago, Gridley said:

individuals can't import supplements anyway, only pharmacies.

 

I suppose they lump supplements in with pharmaceutical products? At least you can obtain them from Amazon and a courier service. 😎

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Emma7855

Hi Guilietta! How are you doing these days? Happy New Year!

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Guilietta
58 minutes ago, Emma7855 said:

How are you doing these days?

 

Hello Emma!

 

For the past 1.5 weeks I have had mostly decent days. ;) From Nov 30 to Dec 18 or so - it was one week of fun after another. I just dropped by a bead on Sunday (so now I am at one bead). This is a drop of 50% but with bead counting there isn't any alternative.

 

Thank you for stopping by.

 

How are you? Do you (also) have some EF difficulties now?

 

 

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Emma7855

So glad to hear you're doing a little better! That's great news 😁And it gives me hope that one day I'll have some small windows too.

 

Me... I'm not doing too great. Still have all of the brain fog, executive functioning issues, vision issues, tinnitus, depersonalization, etc. I can't catch a single break. I'm at home right now with my parents, and I'm really dreading going back to where I currently live -- the past few months have been so hard that I think I've developed some sort of PTSD around my apartment and city. Life's hard and I keep wanting to give up but then I think about what would happen if I weren't around and how heartbroken my family and friends would be. It's a constant battle. 

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Rhiannon

Hi G, congratulations on getting down to that last bead!  Keep us posted on how you do. You know that whatever happens you will be able to get through it, you've been through worse and come out the other side. You're healing. You're on your way!

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Guilietta
57 minutes ago, Emma7855 said:

That's great news 😁And it gives me hope that one day I'll have some small windows too.

 

You will have windows, Emma.  😍  As I look at others on SA - who have made it through this storm - they are right about the waxing and waning of symptoms and that it can take months (several in my case and many, many others) for symptoms to lessen and eventually disappear.  Windows become bigger and longer, waves shorter and symptoms resurface but are less acute (at least that is what I am finding thus far over the past 12++ or so months).

 

Doing things I find stressful or difficult make my symptoms decidedly worse. Using executive function skills makes them worse. Things like organizing, planning, analyzing, and any task that requires these skills - cause anxiety. I don't know why. @Gridley do you have any ideas or know who might? I find I am better if I am able to focus on rote tasks. People with EF issues do  better when performing rote tasks.   @Emma7855 do using EF skills (organizing, planning, prioritizing, ....) cause you more anxiety?

 

1 hour ago, Emma7855 said:

Still have all of the brain fog, executive functioning issues, vision issues, tinnitus, depersonalization, etc. I can't catch a single break.

 

I have these as well - they come and go. I have had tinnitus come back last week - not as bad as the first 6 mos of CT. Vision issues come and go and severity has lessened - and with the lamotrigine and clonazepam I have issues anyway - but the CT  made it far worse.

 

Anxiety and despair and the other emotional things come and go within a day - and I just deal wtih them as best I can. On days when I have had a lot of trouble handling things you can see I've had to share with the SA community and ask for support and advice - and I am thankful it has been given when I needed it so badly.

 

1 hour ago, Emma7855 said:

I'm at home right now with my parents, and I'm really dreading going back to where I currently live -- the past few months have been so hard that I think I've developed some sort of PTSD around my apartment and city.

 

Do you feel this way all the time? I can honestly say that there are days when living somewhere else seems appealing and days when I couldn't imagine it (meaning I have a lot of anxiety around it) if I was alone.

 

Can you extend your stay with your parents? Do you like living in the city or do you like your apartment? I don't live in a city and I wouldn't like to (by myself). 

 

1 hour ago, Emma7855 said:

It's a constant battle. 

 

It seems that way. This is hard - one of the hardest things we have to deal with in life. It gets easier but not as fast as I would like. The disruption in  chemicals and neurotransmitters are causing us to feel badly - not really how we feel.  I remind myself of this when I am in funk - that these are temporary feelings and just that.

 

This is overwhelming, I know.    I am trying to accept this garbage as part and parcel of my life until it goes away. I look at @Rhiannon that it will.... ;)

 

1 hour ago, Rhiannon said:

you've been through worse and come out the other side.

 

Hi Rhiannon!

 

Thank you, thank you. I am trying to forget that I dropped to one bead since it is a big cut. ;)

 

I am trying to move forward with some semblance of my life as it used to be - but a less demanding job - and try to ignore most of the symptoms.  Is this the way to think about this?

 

Hugs,

G.

 

 

 

 

 

 

 

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Gridley
2 minutes ago, Guilietta said:

Using executive function skills makes them worse. Things like organizing, planning, analyzing, and any task that requires these skills - cause anxiety. I don't know why. @Gridley do you have any ideas or know who might?

 

Your executive function skills have been diminished by withdrawal--they don't work well any more--so it's very natural when you try to use them it would cause anxiety since using these vitiated skills is a stressor.  Plus all of this is compounded by the worry about them not working.  It's like those skills are a vast wilderness to which you've lost the map.  I do better with rote tasks too.

 

For instance, I'm trying to set up a visit from a cousin I've never met who's coming to Ecuador for a Spanish intensive.  Given I live in the middle of nowhere and given the transportation system here, it's far from rote and a big stressor.  Your reaction is perfectly normal.

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Guilietta

 

15 hours ago, Gridley said:

Your executive function skills have been diminished by withdrawal--they don't work well any more--so it's very natural when you try to use them it would cause anxiety since using these vitiated skills is a stressor

 

Is this because performing things that are difficult for us cause anxiety? [sorry - Not sure that I understood what you said.]

 

I searched for "executive function deficits and surviving anti-depressants"  and the 4th thing that came up...Emma's introduction and the conversation with me, Alto and (I don't know who else) and 95 replies.


I'm sorry about the agony (how I would describe it) of planning the trip for your cousin's visit. Maybe your cousin will be able to bring in new reading material.

 

The only help I can offer is to copy/paste some tips for coping with EF from a course I took. It is quite a large bit of information - too big to attach.  Making separate post and citing you and @Emma7855

 

 

 

 

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Guilietta

Hello @Gridley and @Emma7855

 

I don't know very much about EF and how it is affected by WD other than  it is, when it returns, etc. What I can share with you (and anyone else) is from a class I took. Here are the notes (or someof them). Please excuse the formatting as they are copy/paste from Word.

 

 

Purpose of class:

To address symptoms of inattention and executive functioning through skills and strategies.

To reinforce learned skills with practical exercises and weekly at home assignments.

 

What is executive function?

 

·      Nine ‘s’ – Starting, Stopping, Sustaining, Switching, Selecting (e.g., decision-making, Sequencing, Self-awareness, Sorting, Strategic planning/organizing)

·      ‘CEO’ of your brain – which is in addition to the above: organizing, reasoning, problem-solving, and multi-tasking, motivation and regulation of control  (impulse control!) (short-term memory is not mentioned here  but is also a big issue for me as with many epilepsy patients)

·      Managed by the frontal lobes of your brain – note that ADHD/ADD is also associated with by your frontal lobes and is the result of damage or issue with the development of the pre-frontal cortex.

·      Examples of difficulties:

o   Not being able to find your keys because you did not hang them on the key hook

o   Forgetting to pay a bill  because it is buried in mail or there is no indication/reminder to pay it, the 1st of the month comes and goes and you forget to pay the rent (for a month!)

o   Not being able to balance a checkbook because there is too much information to keep track of

 

Cognitive Behavioral Model (CBT)

This is how we perceive situations and how we feel and think about it.

Negative thinking prevents rational thinking to problem solve.

 

Anxiety is caused in part by procrastination. The more you procrastinate the more anxious you become and the more difficult the work may become.

 

Calendar and task list system

Remember to use it – morning, end of day and refer to it during the day

Keep it next to me

Keep all appointments and notes in it

Do not obsess about getting it perfect

Evaluate what works and what doesn’t and tweak…

 

Using Task lists and prioritizing

List tasks

ASSIGN PRIORITY based on:

#1 task: must be completed today or tomorrow – only one a day – maybe 2 depending on time required/other things

#2 tasks of less importance and may be completed over the long term

#3 tasks are lowest in importance – but may be more attractive because they easier to handle and can be done quickly

Carry over tasks from previous day to next day

 

Multi-tasking zaps your productivity so don’t do it.

 

BREAKING DOWN OVERWHELMING TASKS

1.     Choose a task from your to –do list

2.     List steps you must complete

3.     Make sure each step is manageable

a.     Is this something I can complete in one day?

b.     Is this something I would put off doing?

c.      If this is still overwhelming – break the task down further

d.     Add the individual steps in your to-do list

 

Sounds simple – but where do you  begin. What are the steps, in what order do you do them, what about when you miss a step or do things in the wrong order – then you have to go back, etc. and redo. This takes more time (and yes is frustrating especially when it happens often).

 

Example:

 

Task: Mail application to agency.

Steps

 

How long might this take?

1. Obtain 2x2 photo / drive to AAA

60  min

2. Review answers and make copy.

20  min

 

 

EFFECTIVE PROBLEM-SOLVING

1.     Article the problem in 1-2 sentences

2.     List ALL possible solutions that you can think of

3.     List the pros and cons of each possible solution – and also – what are the consequences of each option?

4.     Rate each solution in terms of most to least desirable

a.     Will have to break this down as above starting at step 1!

 

Issue for me: analysis/paralysis

I find one solution and stop there – without looking for other solutions (I often can’t think of many possible solutions – so maybe that leads to if/then thinking?

Negative thinking prevents rational thinking to problem solving.

 

Example: I deleted mine.

 

Problem: I deleted mine.

 

PROs of each – should include consequences

CONS of each

Then rate each in terms of practicality and desirability

Should it be also possible co

 

Why is procrastination appealing?

Because we want to avoid negative feelings, thoughts and emotions to reduce the stress we are experiencing. Although this may work in the short term this becomes more stressful because the assignment or task becomes harder when there is less time to do it in (think of a term paper or Christmas shopping).  The task may be hard, boring, or overwhelming and we don’t know where to start. We may be afraid of failing.  We may be postponing contacting someone because we are afraid of rejection.

 

With multiple competing tasks – if  all things are due at the same time – do the hardest one first. It won’t be as bad as you thought it would be and you don’t waist emotional energy fretting about it.  You will also feel better about getting things done.

 

SORTING MAIL AND PAPERS

Create a triage center (I don’t because of space limitations).

Choose a central location where all incoming mail, bills, and paperwork will be opened and sorted.

Don’t pick an evening if you are tired at the end of the day and likely won’t do it. Plan to do it a time when you will do it gets done and not forgotten about.

Store all related and necessary items in this triage center (pens, stamps, calculator…)

Determine retention period (and any other rules) for keeping paper and bills. For example – you will look at receipts on the 30th of the month and decide to keep or not.  Schedule in your calendar when to review your files and purge.

Plan to go through your triage center 2-3 x per week and put these dates and times in your calendar and process each piece (handle it now; file – why?; discard it; set it aside for further action and put in the calendar to act on that specific action).  OHIO when possible (only handle it once). What needs to be filed should be done as soon as possible to avoid clutter.

How do I know what to keep and what to toss

What do I do with WIP stuff so it doesn’t get mislaid or lost or simply be clutter? One issue is that if something is out of sight – it is out of mind. What then??

 

 

Develop a simple filing system

1.     Decide where you will keep your system (as part of the triage center?)

2.     Pick 1-2 drawers or a small filing cabinet.

3.     Set up by categories and sub-categories (Medical, Taxes, etc.)

4.     Set aside a time to use this system each week (is there something that I can toss this week?).

5.     KEEP THE SYSTEM SIMPLE

6.     How do I know what to keep and what to toss?

7.     It is said that work area needs to be free from distractions and ‘clutter’ but I actually need some clutter to work…(also as stated above, if something is out of sight it is out of mind – which can cause anxiety to know that it is there for me to do but conversely causes me to lose focus

 

ADAPTIVE THINKING

 

Adaptive thinking is realistic thinking. It is not positive thinking per se. Adaptive thinking lets you uncover what is keeping you from accomplishing tasks.  Automatic thoughts determine how we act. Feeling overwhelmed affects how we act (or not act). The goal of adaptive thinking is to modify some of these automatic thoughts and allow you to complete an action. Not all automatic thoughts are flawed.

 

1.     Identify the situation and the associated automatic negative thoughts

2.     Identify the thinking traps

3.     Challenge negative thoughts

4.     Reframe and develop a rational responsible – a short balanced statement to the original thought

 

So what are some ‘thinking traps’:

§  Catastroph’izing’: thinking the worst possible outcome will occur

§  Jumping to conclusions: anticipate a negative outcome (or response from someone) without the facts

§  All-or-nothing thinking: you see things in black and white (e.g., if I don’t finish the project perfectly – I have failed – or the project is not done after all.  This gets to the ‘just good enough’ issue I have faced

§  Disqualifying the positive: you undervalue or minimize your accomplishments or something positive (I was just lucky!) instead of accepting a complement (for example)

§  Overgeneralization: generalize from one negative event

§  Magnification: exaggerate the importance of something (an error, for instance)

§  Emotional reasoning: assume that if you feel badly about something – then it is true

§  Mindreading: you know what someone thinks about you before you have the facts

 

Evaluate your thoughts for ‘thinking traps’

 

§  Situation: Deb didn’t respond to my email

§  Thought: Deb doesn’t like me

§  Thinking trap: jumped to a conclusion

§  Emotion: Sadness, grief

§  What would you say to a friend in this situation?

§  What might a friend say to me?

§  Is there another explanation other than Deb doesn’t like me?

§  Do I have evidence of my thought?

§  Rational response: There are other reasons Deb hasn’t responded to my email. These include:  Deb is out of the office; Deb is away, Deb doesn’t have any information, Deb has someone visiting from out of town, etc. other reason might Deb have not responded?  Maybe Deb doesn’t check her email often.

 

ATTENTION SPAN AND DELAYING DISTRACTIONS

 

Do this exercise….

What do I get distracted by? List……

What can I do to reduce my susceptibility to particular distractions?

 

Find your attention span:

1.     Choose a boring / unattractive task

2.     Find a stop watch or timer

3.     Start the task and start timing

4.     Hit the stop watch when the urge comes to stop working or a strong distraction pops into your head. How long could you focus on your task?

5.     This is your attention span.  

 

Break down tasks so they can fit into your attention span! So if my attention span is 8 minutes then I have to break things down into very small pieces. One thing that causes my attention to wander is when I am trying to think of a solution to any problem.

 

DELAY DISTRACTIONS

1.     Set a notebook or piece of paper next to you / your workspace.

2.     Set a timer for your attention span (8 minutes!)

3.     Start working on the task

4.     When a distraction pops into your head, write it down in your notebook for later and tell myself ‘I can worry about this later’. 

5.     Return to your original task until you have finished OR the timer goes off.

6.     Review your list of distractions and decide if they need to be dealt with now, whether they are important or whether they are already on a task list.

 

What about just telling yourself to ignore the thought? Didn’t Franky say that when you have too much going on – you cannot focus? Something like that

 

ALWAYS ASK YOURSELF IS THE TASK IMPORTANT OR EASY/ATTRACTIVE?

 

STOP AUTOPILOT AND MINDFULNESS

 

What is mindfulness – being in the moment

1.     Noticing: becoming fully aware of our thoughts, feelings, physical sensations, and environment in the present moment.

2.     Brining curiosity, openness and interest to our experiences

3.     Practice self-compassion and kindness towards myself

4.     Being non-judgmental towards your thoughts.  Instead of judging and reacting to thoughts – simply observe them.

 

Benefits of mindfulness

1.     Attentional control: mindfulness teaches us how to focus, expand, or redirect our attention. It helps us notnice where our attention is, when it has wandered (e.g., thoughts about the future and the past), and bring it back to the present (what you are doing!). With mindful awareness, we can notice when we’ve become distracted, acknowledge the distraction and return to the task at hand.

2.     Self-compassion and acceptance: when we observe critical or judgmental thoughts about ourselves, we can notice this pattern, accept that these reactions are part of being human and feel compassion for ourselves [and that perhaps we wouldn’t treat others so harshly.]

 

HOW TO DEVELOP MINDFULNESS

 

1.     Formal mindfulness meditation: this involves closing your eyes and placing awareness on current sensations in the body (e.g., noticing the sensations of breathing).  Practice sitting in a chair, on the floor, lying down on a bed or mat.

2.     Brief mindful practices: in these exercises you bring awareness to current bodily sensations at frequent points in the day. Does this mean breathing exercises – take five deep breaths? I am supposed to do this in bed in the morning and at night….

3.     Mindfulness of daily activities: this third type of practice involves becoming more aware as you perform daily activities such as eating, drinking, showering, driving, exercising, etc. We perform many activities on ‘automatic pilot’ – without thinking about what we are doing. Mindfulness encourages us to be present to each moment much more frequently than we otherwise would.

 

HOW TO STOP AUTOPILOT

 

When you experience that you are doing something without thinking about it – such as showering: stop, think, observe, puff

 

One of the consequences of autopilot is that you can do things without realizing you did them. For example – you may put the cell phone where it is not usually stored – so you won’t find it or know where to look for it. You can also forget if you took your medicine or not.

 

To counter auto-pilot – you might verbally affirm when you are doing something. For example, “I am taking my medicine now.”

 

COUNTER PROCRASTINATION

 

Procrastination may happen because we don’t know which task to work on when there are competing tasks. So what do you do?

 

a.     Accept the pros and cons of doing one activity over the other (vacuum or clean the shower) –

b.     Be decisive – make a choice and work on for 15 minutes

c.      Love your decision – be glad you got it done!

 

What skills can counter procrastination?

a.     If the task feels overwhelming – break it down

b.     If you’re unsure how to start – do a pro/con list of different options. If you are really stuck ask someone for help.

c.      If you are having negative thoughts about the task –

 

 

 

 

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Guilietta

More EF stuff....

 

One big thing that we were all told in the class was to ask for help.   I honestly dread asking anyone for help (or anything for that matter) as I feel like an idiot because I'm often flummoxed by what are simpler tasks for most people. However, if someone asks me for what is considered an EF function - I'm often able to give them some good ideas. ;)

 

I'm honestly not very good at following / practicing all of this as it is a job in itself so don't think I know what I'm doing even though I try hard.

 

One thing about EF issues is that people iwth ADD/ADHD share EF deficits. I find that I can be really focused on something  and even when it is NOT going well and when I SHOULD get away fromt it I forget to. I don't realize I should. So try and pay attention to how you are feeling.

 

More ideas on ADHD is channel on youtube - hundreds of videos - on 'how to adhd.'

 

That being said - people with EF flourish in a lot of areas - particularly when doing something they are PASSIONATE about - and int he right environment (i.e,  not a fast paced one). @Gridley do you have thoughts about this?

 

Hugs.

 

 

 

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Gridley
2 hours ago, Guilietta said:

Is this because performing things that are difficult for us cause anxiety?

Yes.

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Gridley
3 hours ago, Guilietta said:

doing something they are PASSIONATE about - and int he right environment (i.e,  not a fast paced one)

Sounds like you'd be good at a lot of things as long as the environment was conducive.

 

When I was younger and freelance writing or writing for public television, I had a lot of passion and the atmosphere was not intense.  WD has snuffed a lot of that out.  I'm hoping the joie d'vivre will return.

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Guilietta
7 minutes ago, Gridley said:

Yes.

 

Thanks. 

 

I wonder if using EF skills - even if they are difficult and therefore stressful -  helps develop them.

 

I wonder if not working may be more detrimental for healing than working since my brain is not being actively 'used' to build connections. Does that make sense? What do you think?

 

 

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Gridley
6 minutes ago, Guilietta said:

What do you think?

I have a little different approach from you.  I don't push myself too much because of the stress factor.  But I can see your point, the old if you don't use it, you lose it.  I don't know if the benefit of using the brain will outweigh the stress damage in terms of healing.  Some of my approach stems I think from being older.

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Guilietta

 

15 minutes ago, Gridley said:

WD has snuffed a lot of that out.  I'm hoping the joie d'vivre will return.

 

I truly am sorry. Can you say why in particular  WD has taken this? Is it the anhedonia, fatigue, or apprehension about ongoing WD?

 

4 minutes ago, Gridley said:

When I was younger and freelance writing or writing for public television, I had a lot of passion and the atmosphere was not intense.  WD has snuffed a lot of that out.

 

Good writing is difficult and I think takes considerable time.   As a university graduate my dream job was to be a freelance journalist until I learned that my writing speed was not compatible with timelines.

 

I don't mind the hard work if I love what I am doing. I think this may be a luxury if you are an academic at heart. Some people  will work for the money alone. I honestly view that as a poor deal. It's their money for your [finite amount of] time unless you have the skills to work for yourself.

 

 

 

 

 

 

 

 

 

 

 

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Gridley
9 minutes ago, Guilietta said:

Can you say why in particular  WD has taken this

Yes, the anhedonia and apathy are the main culprits.

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Guilietta
13 minutes ago, Gridley said:

I don't push myself too much because of the stress factor.  But I can see your point, the old if you don't use it, you lose it.

 

Quite right on both. I want enough time, attention and energy to pursue my passion and health but enough money and interest to keep me in a job I can do well and that allows me a decent/nice quality of life. 

 

Re lose it or lose it - I see people in their 70s and 80s wanting to do things for themselvs as long as they are able - to retain the skills. I once thought it was just to 'keep' the skills. But I now think it as an indicator of mortality. Maybe I am clueless but I really didn't get it until now.

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Guilietta
14 minutes ago, Gridley said:

anhedonia and apathy

 

A gruesome twosome for sure.

 

It is 2.40 pm here and I want to feel better about myself by getting one thing done and rescheduling everything else.  I could do with some more discipline and time management.

 

I am tabling work on my resume today. I sacrificed all of yesterday and last night to the damn thing.

 

Have a pleasant rest of your day. Nice chatting with you.

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Gridley
50 minutes ago, Guilietta said:

Nice chatting with you.

 

Igualmente.  Meaning equally so for me.  

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Guilietta

Dear all

 

Interesting article from the BBC today - food for thought. In addition to ADs, lower cholesterol (and statins) have remarkable impact on behavior and lower cholesterol has been associated with increased violence. I had not realized this and perhaps some members on SA have not either.

 

https://www.bbc.com/future/article/20200108-the-medications-that-change-who-we-are

 

22 hours ago, Gridley said:

Meaning equally so for me.  

 

I hope you are having a pleasant day. ;)

 

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Guilietta

Stunning finding on SA. The authors did a tremendous amount of research. I looked for 20 minutes and found next to nothing of value. I did find a few things on the Telegraph including:

 

It is from this article written by an MD. https://www.telegraph.co.uk/news/health/10717431/Why-Ive-ditched-statins-for-good.html

 

One thing jumped out: The results for women were crystal clear. The lower a woman’s total cholesterol, the greater her risk of dying, either of heart disease or anything else, including cancer. This reflects findings in previous studies.

 

Lipid lowering drugs are #5 most dangerous prescribed drugs in the USA.

 

I have to figure out how to taper off my 10 mg of crestor and how it may affect WD, etc.  As I and others have said...the drugging of America.

 

Speak hello to @intothewoods

 

Will communicate later. My PM box is full and have to do some deletions....  :)

 

 

 

 

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Erell
On 1/7/2020 at 4:12 AM, Guilietta said:

For the past 1.5 weeks I have had mostly decent days. ;)

How glad I am to read this ! ❤️

i'm sorry I don't have enough attention to read all your posts, but I'm glad to see that things are a bit easier now than in December !

Big hugs !

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MissyE

Hey Guiletta

A quick hello.  Not had chance to catch up with your thread but appreciate you understand my dilemma about too much time on here.  Today I've been on 2 hours, but just catching up with friends and updating my thread.  I read the BBC article you posted about statins, L Dopa, ADs etc, frightening.  When will the machine accept that the drugs don't work for everyone!?  I couldn't begin to imagine changing sexual orientation and then being assaulted, poor man, poor family; awful, the stuff of a very dark novel perhaps...

Hang in there G.

Catch up soon.

Missy x

 

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Rosetta

Hi, sweetie!  I hope you are feeling ok.  You have been active at least.  

 

I saw that bbc article about statins.  So upsetting.  My MIL takes them, and we can’t convince her to stop or taper.  Her doctor has her convinced she will have a stroke if she doesn’t take them.  It’s not true at all.  She doesn’t have the other risk factors.  She is much more anxious than she used to be and she complains about losing muscle strength but she thinks it’s just her age.

 

R

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Guilietta
14 hours ago, Rosetta said:

She doesn’t have the other risk factors.  She is much more anxious than she used to be and she complains about losing muscle strength but she thinks it’s just her age.

 

Hello Rosetta!

 

Nice to hear from you and thank you for stopping by my thread.

 

I have some 'risk factors' but after looking at some of the articles on statins - inclulding the piece that cholesterol is good for women and statins are associated with healthproblems for women (aside from vascular ones) - I have to reevaluate about continuing them. The cardiologist - after 3 mos of haggling with me - finally told me it was about risk for me.

 

I take COQ10 for muscle wasting. I can't comment on your MIL's situation - but family history is a huge part of risk factors.  Why does she think she has muscle wasting? Does she have muscular pain too? This is frequent and a frequent cause for discontinuation within 6 mos.

 

The information providd on the statins page is a tremendous source. 

 

Hpe you are well. I am doing better (thankfully) and I think of your email that these symptoms keep on showing up - new and the same ones repeatedly.

 

Hugs,

Giuilietta

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Rosetta

G,

She’s been complaining about muscle strength for a while.  She can’t open jars, struggles with her golf bag, etc.  She had terrible knee pain for a while, but that seems to be gone.  She take CQ10, too.   We cannot convince her to consider all the warnings about statins. She thinks doctors are gods, and she’s terrified of having a stroke.  She doesn’t have any heart problems or a history of stroke.  It’s just maddening how the doctors act.  We give her articles to read, but it makes no difference.  She thinks we are the odd ones for being suspicious of doctors.  We are just “kids” who don’t understand what it’s like to be old.  Ha!  She’s been stronger than I have been these past few years, of course.   All we can do is try.  I wish she had a different doctor.

 

By the statins page, do you mean the S.A. page or something else?  —R

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sunnysideup69

Hey @Guilietta, wanted to drop by before my computer goes off this evening....how ya doin' on that one bead?? Hope it's going well and you're getting some good days. Sending hugs xxx

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Erell

Hi dear friend

How are you doing?

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Rosetta

Hi, Guilietta

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sunnysideup69

Hello dear friend, how are you? ❤️ I hope you're enjoying a good window whilst away from SA. It's very good to take a break :) 

Hello dear friend, how are you? ❤️ I hope you're enjoying a good window whilst away from SA. It's very good to take a break :) 

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Guilietta

Hello @Rosetta @sunnysideup69 @Erell @MissyE @intothewoods @Gridley @mustafa @Rhiannon

 

Hello dears,

 

Thank you for stopping by and the info about statins and the other drugs pharmas persuade MDs are panaceas for part of the vicissitudes of being a human being.

 

I have been silent since Jan 12 because on the days (and 1/2 days) I am trying nto do as much as possible to work on 'normal' activities.  I don't have that much positive to say about WD symptoms and don't need to bring anyone down.  ;) However - I have been out for shopping, meeting friends for coffee a couple of times, get the dog to the vet a couple of times for usual care.

 

'cold' symptoms. Oddly I have had a bloody nose, throat cough, laryngitis, sore throat, cough that is going away, since the past 2 weeks. No stuffy nose. No runny nose or eyes.

 

I have been thinking of you all -  how we have improved and our unique ongoing struggles sand changes in symptoms on some us particularly,  impact on our lives, all around the globe - including those not mentioned on this message with whom I communicate via PM. 

 

I have had a several days with anxiety and feelings of despair (the latter goes up and down within a day on many days - and can't wait to go to bed) - this despair one of the worst - does anyone else thing so?  I just want to close my eyes. I struggle to stay awake.

 

The most limiting overall are 'Vestibular' if I can call if it. The details of this  is documented in a separate post because it is focused.  It contains (also) what I am doing about it, what else  can  do, who might be able to help (or not help), etc., handling others who see me like this, etc. 

 

Hugs to all,

Giulietta


 

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Gridley
7 minutes ago, Guilietta said:

Hugs to all,

Good to hear from you, G.  We are all behind you.  

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sunnysideup69

I second that....very good to hear from you @Guilietta xxx

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Guilietta

Hello all

Hello @Gridley @ShiningLight@Rosetta

 

I have documented and tryed to trend, etc. my vestibular (for lack of a better bucket) symptoms. These have been overall the most limiting (I think) since I can't walk, etc.  If you have any thoughts - they would be appreciated.

 

Are these WD effects or s.th. else?

 

@Gridley Should I document dosage changes with these 'symptoms'?

 

@ShiningLight I wonder how you are doing in general with your symptoms - are they like mine (or mine like yours)? Are arm crutches working out for you I hope? I will try to pop to your thread later. I am now frazzled.

 

I have tried to organize them under sub-heads.

Symptoms:

  • Frequency: inconsistent.
  • Intensity: mostly the same and I a lucky if they start a little later and are of shorter duration - this happens 1x or 2x a month.
  • I am chair-bound for 3-3.5 hours and need to touch  things to get there. If/when I walk - it's sort of like a baby. Gradually shift weight from leg to leg, arms out straight for balance and weight distribution, back straight, tiny/steps forward. No turning.
  • During this time I may also have H/A,
  • head turns, not exactly dizziness - but I don't know what to call it,
  • Sometimes dizzy
  • Sometimes thigh pain and stiffness
  • Frequent Visual issues - worse diplopia and blurriess than usual (I know the difference between the usual and when somthing is markedly worse - things are that much difficult to see, for example)
  • Sometimes foggy thinking and memory issues. I may look at a word and not remember how to spell it or if it looks right....  ;) 

These things may be every other day, every 2 or days - it's thrlling when i t's 4 or 5 days and 9 I think they're over. ;)  But, woe is me, the damn things come back.

 

How I cope in case helpful to others

  •  
  • Scheduled appt with ENT and had audiology test yesterday - results are that since Feb when I went for exam due to bad tinnitus - my hearing results have been revdersed! R ear now better than L! Audiologist came in looking worried and will post my results in 3 hours.... Will post results/comments when avalable.
  • Emailed to neurologist and not looking forward to response. She will probably want to reduce lamotrigine level - but I'm not game for a) any changes and b) this doesn't exactly feel like elevated lamotrigine (I would have nausea too I think). I am not game to reduce or change anything. I will update.
  • She did make an intersting comments about tapering which I will PM you separately since I don't think it's SA recommendation @Gridley
  • I think about @ShiningLight (as I did long before these symptoms started showing up. as a person who has taken this family of drugs since age 9  - I know what toxic levels are light. however - symptoms are self-limiting).

Non-physical - what helps me and wonder how you cope if these are issues

  • Make it to desk, have set aside things to do - amusing (?) and stuff I can 'do' during this time - reading, writing and thinking and a bummer. That computer plays DVDs is a good thing and I can watch repeats.
  • I try to hide this from parents because a) Dad worriees, b) mother angry/upset to see my walk this way and will I fall.  That they don't understand (or may not) makes this worse for me (of course).
  • I have a hard time accepting this and when it will go away
  • Knowing that some others on here have this PITA.
  • Keeping positive thoughts.  I am sick of them but they are going to get getter eventually.
  • Wonder if a bunch of us should testify before Congress. Idea came to me this morning. I see them tossing this out since we've all been on psych meds or CNS activating drugs....maybe we could have MDs join us.?

 

 

 

 

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