Monday, 28 July 2014

Psychiatric drug withdrawal

as I get older, more things grate on my nerves, I don't know why. I feel like becoming a hermit.

Some of it may have to do with me and my Dr. weaning me off all these stupid psych. drugs I've been on, clonazepam for 5 years, seroquel for 3?  These drugs actually change your brain and how it works, and when you come off them you get rebound symptoms of why they put you on them in the first place but 5x worse.  That's why I can only drop 1/4 tablet (0.25 mg) a month of the clonazepam.  I started at 3 mg, and am now down to 0.75 mg, so that's good but I do get a lot of rebound anxiety. The other drug (quetiapine/seroquel) for mood swings/agitation/racing thoughts, I have reduced from 300 mg at the start of March to 100 mg.  Unfortunately, it's going off the last bits of these drugs that causes the worse withdrawal symptoms.  I don't care, I just want off them.  But it is making me kind of crazy : (

Tuesday, 22 July 2014

My supplements

These are to try to give me more energy and make up for deficiencies, keep free radicals in check by being antioxidants, keep my insides moving, and make up for poor eating habits. I'd love to hear if there is anything you take that you find helpful.

Probiotic 30 billion cells x1/day
Magnesium Oxide 400 mg x2/day
B12 1000mcg x2/day
Vit D 1000 IU x 3/day
Greens + Multi 1 scoop daily (excellent source of vit A)
Bodylogix Woman's Protien/Fibre powder 1 scoop/daily (helps me meet my protien/fibre goals)
Vit B50 x1/day
Vit C 500 mg 4-2x/day
Coenzyme Q 200 mg x1/day
Zinc 25 mg x1/day
Sea-Sel-200 Trace Mineral x1/day (mostly selenium)
Ecological Formulas Tri-salts (keep pH balanced and is an anti-drug) 1/2 tsp x2/day
Ultra Fibre 3 tabs/daily
Ca/Vit D chews x2/day (600mg Ca/400IU)
FeraMAX 150 Iron tab x1/week
Potassium Chloride/Gluconate 1/2 tsp (1200mg) daily
Krill Oil 1gram x1/day
Cranberry concentrate 1x/day (prevent bladder infections to which I'm prone)
Manganese 50 mcg (for prescription drug detoxification)
Psyllium (for bowels) 1 tbsp daily
Vita-Vim multi vitamin

This is just what has been suggested to me by various doctors, do not take anything without a doctor's or nutritionists advice. I do not endorse or promote any particular named brands.

Monday, 10 June 2013

Being Sick Sucks Pt. 2

When I feel well vs when I feel sick - two totally opposite polarities in my life. When I feel well, I wake up in the morning feeling bright and raring to go, can't wait to start my day, get at those chores, get outside, call people, participate in life. I can get up, take a shower, wash my dishes, pop in a wash of clothes and go for a nice walk, and feel like a 'normal person', a part of the human world, society. I'm energetic, happy, friendly,bubbling over with the joy of living. I'm interested in everything,I want to do everything, go everywhere, see everyone, just experience life to its fullest.

Unfortunately, this all leads to a lot of running around, staying out too late, doing too much, and then, Wham, the CFS catches up to me. Then I become very weak,extremely fatigued. It becomes a chore to even roll out of bed, by body feeling weighted, achy and sore, my mind cloudy, confused,dim. I sleep for 20 hours at a time, taking all my energy to haul my self to the washroom and back.
Some days I'm able to sit up and read a few hours before collapsing back into oblivion for another 20 hours, other days, I sleep round the clock, like being in a coma, barely conscious of anything around me. I can barely talk, it's hard to get the words out of my mouth, my brain just won't construct a proper sentence and it takes too much energy to move my mouth. Eating falls by the wayside, as do, of course any chores. Dishes pile up, laundry doesn't get done, dust and dirt collect, I run out of milk, egg, bread, juice.

The ferrets get bored and frustrated and wonder where their mother is. This can go on for quite some time, the longest being 3 weeks. Sometimes it's only a day or two. Depending
on my stamina I can be up and going well a day or two, down a day or two, or go quite well for several weeks and be down several weeks. It fluctuates like mad.. When I'm down and out, my whole world shrinks. It becomes just me, my ferrets, my apartment, my trying to cope and get through the bad spell.
I become depressed, frustrated, and angry. I berate my self, my body, for being sick and try to make it do what I want, try to make it WORK right, but the more I push the sicker I get. Then, finally, when I do feel better, have rested enough to satisfy my weird body requirements, I have 10 loads of wash to do, an entire apartment to scrub, desperately needed grocery shopping to do, loads of dishes to wash, ferrets to walk, relatives to visit, phone calls to make, people to catch up on.

And then, of course, after the mad flurry of trying to catch up on everything (which I never do, there just isn't enough time to do it all before I 'crash' again) after being sick, what
happens.....I do too much and end up back in bed! I know the secret is to pace myself, to try to balance my activity, but when I feel well I have a very hard time controlling my activity.
After being isolated, sick and tired I want to get out and live, I want to get ALL my chores done AND see my friends AND go for walks AND....and everything. So on it goes up and down, i'm always searching for the elusive balance of energy that will allow me to function every day at, at least, some fairly consistent level.
The quest continues....
©Allie Brosh
Pic © Allie Brosh

Wednesday, 29 May 2013

Tuesday, 14 May 2013

My nightly regime

Just tires me out looking at them all. 2 large glasses of water to get them down.  I'll list what they are and for what tomorrow, to sleepy now.  Will start making regular posts again, had a bad few months. Hi to all, gentle hugs.

Things I miss: Part 1 Singing

I adored singing all my life. I sang my brothers and sisters to sleep every night with Kriss Kristofferson songs, and was often asked by my mom to sing. I sang constantly on car rides too. I was in church choir and took guitar. I had a boyfriend who played guitar and we would sing together at variety concerts, around campfires with others, etc. I adored it and was told I was a good singer. After I became ill I tried taking singing lessons to better myself voice and learn to read music. It was then I found the extent of the drain it took on me. I couldn't continue as it would leave me bedridden for days, exhausted and with severe air hunger and painful costochondritis (see below).

Now, on good days, I sing to myself as I sweep a bit or sing in the shower or car. My voice is terrible, a rusty croak, my current boyfriend puts up with it though, which is nice. I tried doing two YouTube videos awhile back of my singing “Non, Je ne regrette rien” and “The Night the Lights went out in Georgia I redid them over and over for 3 days or so, unsatisfied, and ended up bedridden and starving for oxygen for weeks. My rib cage and chest wall were severely inflamed and I was in terrible pain So, yep, definitely something I miss. What do you miss most in your restrictions due to your illness??

Air hunger is a phrase used to describe an ongoing sensation of not being able to get enough air to breathe comfortably. A person suffering from air hunger may feel the persistent need to take deep breaths or yawn in an attempt to get more oxygen into the lungs. Some feel as though they have “forgotten” how to breathe correctly, can't breathe deeply enough, and may be frightened at the prospect of not being able to breathe.
The seeming lack of oxygen can also trigger dizziness, hyperventilation, and the fear of suffering a heart attack. -Leigh Peterson

Costochondritis











Upcoming Part 2: Dancing

Thursday, 9 May 2013

this blogger helps explain why i haven't been posting lately

This blogger is wonderful and this entry of hers helps explain why I haven't been posting lately.

At first, I'd try to explain that it's not really negativity or sadness anymore, it's more just this detached, meaningless fog where you can't feel anything about anything — even the things you love, even fun things — and you're horribly bored and lonely, but since you've lost your ability to connect with any of the things that would normally make you feel less bored and lonely, you're stuck in the boring, lonely, meaningless void without anything to distract you from how boring, lonely, and meaningless it is - Allie

Hyperbole and a Half: Depression Part Two

Saturday, 23 February 2013

Adding myself to technorati

Not a interesting post, just something i have to do to add myself to Technorati, a blog list site.  Sorry. 

 CGD7NRNVQBXF 

Tuesday, 12 February 2013

Cfs and exercise

Comparing Exercise Advice
 January 18th, 2013 Jennie Spotila


  Exercise is an issue for every CFS patient, and there is no shortage of advice on whether and how to do it. On January 14th, the CDC hosted a conference call as part of its Patient Centered Outreach and Communication Activity (PCOCA) efforts. Dr. Nancy Klimas and Dr. Connie Sol presented their exercise advice for people with ME/CFS. I’ve seen some sharp criticism of the presentation, so I thought it would be helpful to compare their advice to the recommendations from Dr. Christopher Snell’s group at the Pacific Fatigue Lab. Dr. Snell and his collaborators (Staci Stevens, Todd Davenport, Mark Van Ness) have done the most work on exercise capacity in CFS, and published a conceptual model for safe exercise in 2010. You can learn more about their work in this webinar they gave last year.

Why Do It?

It’s common knowledge that exercise is an important part of preventing heart disease, diabetes, and osteoporosis. And I think most CFS patients would be eager to exercise if it did not make us sick. On Monday, Dr. Klimas said that deconditioning explains much of the dysautonomia seen in CFS. I think she may have overstated it because there are physically fit people who develop POTS, NMH or other orthostatic conditions, but deconditioning certainly wouldn’t help. Dr. Klimas described herself as the “perfect advocate to talk about exercise” because of her decades of research and clinical experience focused on biomarkers and immune function. She does not believe exercise is the only possible treatment for the disease (unlike proponents of the psychosocial model), but she also does not think it should be ignored.

I should note that while Drs. Klimas and Sol use exercise to provoke PEM so they can measure the gene expression cascade that follows, they have published no papers on exercise physiology in CFS. Snell and his group have published multiple papers on the topic, including a study that shows deconditioning is not the cause of PEM. Despite showing that there is metabolic dysfunction unique to CFS, Snell and many other experts recommend being as active as is safely tolerated. Stronger muscles will lead to less pain. Being as physical fit as possible will improve our chances with heart disease and other long-term consequences. If we can safely tolerate a certain kind or level of activity, we should do it. The emphasis must be on the word SAFE, and activity should be tailored to each individual patient’s capacity.

Identifying a Target Heart Rate

My articles on PEM and exercise explain the body’s energy systems and the importance of heart rate in detail. For purposes of this post, I can say that both Klimas and Snell agree that heart rate at the anaerobic threshold is the limit for safe activity in CFS. So how do we identify the correct heart rate?

Dr. Sol uses a single test in which the patient exercises to exhaustion. Multiple measurements help identify the heart rate at the anaerobic threshold, and then that heart rate is used to design an individualized exercise protocol. Dr. Snell and Staci Stevens use a two day maximum exercise test to do the same thing. That second test is critical because CFS patients’ metabolic function declines significantly after the first test. In my own case, my heart rate at the anaerobic threshold went from 105 on day one to 95 on day two. Under Sol’s system, 105 beats per minute would be my maximum heart rate, but that would be too high on any day that I was not well rested. My personal view is that by skipping the second test, Sol and Klimas are at risk for setting the safety limits too high for most patients.

Not everyone can take a two-day exercise test (for a variety of reasons), so there is a simple calculation for guessing at your heart rate at the AT. Klimas and Sol recommended: 220 minus your age times 60%. In my case, (220 – 44) x 60% = 105.6 bpm (matching my AT on day one).  Stevens recommends 50%, or (220 – 44) x 50% = 88bpm (lower than my AT on day two). Here’s the problem with the calculation: a bedridden patient would not have the same limit as me (housebound) or a friend of mine (who can leave the house every day). We’re all sick with CFS; we all have metabolic dysfunction. But it’s unlikely that our heart rate limits are identical.  Patients must be cautioned that the calculation is a guess only; careful experimentation is necessary to establish your safe level.

Defining Safe Activity

Both Sol and Stevens agree that the safe level of activity is the level that does not produce symptoms. Dr. Sol said that she knows she has prescribed the right level of activity when the patient reports that he/she feels no difference. Stevens has said that any symptom flare that lasts more than a few hours is too much and that activity must be scaled back.

What qualifies as exercise? Both Sol and Stevens agree that activities of daily living should be seen as exercise. The effort required to cook a meal or shower can raise your heart rate too high, and may need to by modified to stay in the safe zone. They both agree patients should examine the activities that make them tired, and try to adapt and pace those activities. Dr. Klimas said that these methods will lead to a more even, reliable supply of energy; Dr. Snell has said the same thing.

Beyond activities of daily living, Sol suggested yoga or non-weight bearing activities such as water exercises. She recommended starting with a minute or two of activity followed by a few minutes of rest, repeated five times once a week to start. In contrast, Stevens recommends a more modest starting point of stretching and range of motion exercises. Patients should advance to low intensity, short duration activity only if the stretching is well tolerated. For Snell and Stevens, heart rate is not the only indicator of capacity. Patients must pay attention to their perceived level of effort, and avoid activities (or activity duration) that feels “somewhat hard.”

Severely Ill

There is no question that there are CFS patients who are too sick to come to a lab and pedal a bike for eight minutes. Accordingly, these patients have not been studied for metabolic dysfunction and exercise capacity. Drs. Klimas and Sol made no comment on Monday about what these patients could or should do. I interviewed Staci Stevens as part of the research for my article on exercise, and based on her advice I wrote:

A bed bound patient may need assistance to turn in bed or complete basic activities such as showering, but heart rate biofeedback can help identify the appropriate pace and duration of these activities. Bed bound patients can also try deep diaphragmatic breathing, perhaps six deep breaths at a time. Deep breathing will lower heart rate, and also work the large muscles of the diaphragm. Severely ill patients might begin with passive stretching, where a physical therapist or caregiver moves the patient’s limbs slowly and carefully to gently stretch muscles and try to improve flexibility.

This must be done very cautiously. There is simply no published data that investigates the metabolic dysfunction in bedridden CFS patients or that explains what they can do safely. The cost of trial and error can be high, so patients should be very careful.

Expectations

Reasonable and realistic expectations are an important part of any rehabilitation effort. Snell and his group describe the goal as being as active as possible within toleration, and hopefully this will lead to a more predictable energy supply (eliminating the push-crash cycle). In contrast, Dr. Klimas said on Monday that patients will show improvement if they follow the program, and that when they stay below the AT they feel “much better.” Then Dr. Klimas claimed that some patients have been able to return to work or athletics. This is an extraordinary claim, especially in the absence of published data. How impaired were these patients to start with? How long did they follow the program, and was the program standardized across patients? Did these patients show objective improvement on subsequent exercise testing? How long did their improvement last?

Personally, I was very surprised to hear Dr. Klimas make this claim. She is quite familiar with the severity of the disease, the dearth of treatments, and the danger of false hope. In my opinion, claiming that pacing with a heart rate monitor and slowly progressing exercise is curative in the absence of published data is misleading, at best. The notion that exercise will make us all better is pervasive and potentially harmful to patients. Show me the data.

The Comparison

There are many similarities between the advice of Klimas and Sol on the one hand and Snell and Stevens on the other. Both sides agree that patients should be as active as they can safely tolerate. They agree that activities of daily living should be seen as exercise. Both recommend using a heart rate monitor to pace activity by staying under the anaerobic threshold. Both recommend starting very slow with exercise, and avoiding exercise that increases symptoms.

There are also some differences. The two groups calculate the safe zone differently, with Klimas and Sol potentially setting limits higher than patients’ anaerobic thresholds. Klimas and Sol offered no advice to bedridden or other severely incapacitated patients, while Snell and Stevens offer at least a little guidance. Finally, Snell and Stevens do not suggest that their program is curative in any way. They suggest a cautious but realistic goal of eliminating the push-crash cycle. In contrast, Dr. Klimas was quite expansive in her claim that her program had helped some patients return to work.

Despite their differences, both groups give the same basic advice to CFS patients: use a heart rate monitor to help you recognize when you are doing too much; ensure adequate rest; be as active as you can without triggering symptom flares or post-exertional malaise. This is a good starting point, but I hope that one day we will have access to physical therapists and others trained to help us navigate these limits. From my own experience, trying to apply this expert advice on my own has been unnecessarily frustrating.