When we honestly ask ourselves which person in our lives means the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand.

Henri Nouwen

Four Hot Topics:Balance, Fatigue Spasticity and HeadacheMonique M. Canonico DOAssistant Professor, John A. Burns School of Medicine

2014 Lecture Series- NMSS

Overview

Balance Fatigue Spasticity Headache

Balance

Balance issues may affect over 50% of people living with ms

Study was done in 2008 by Cameron et al Tested by SSEPs Subjects with MS demonstrate differences

in the delay in postural response latencies between their two legs

4 Strengthening and Balance Exercises to Try at Home

1 Heel raises/toe raises: Stand up on tippy-toes and hold for 5 seconds, lower, and then rock back on your heels by lifting your toes up, and hold for 5 seconds. Do this 10 to 15 times. 2 Leg balance: Stand on one leg and hold for up to 30 seconds. Add in challenges like raising your arms to the side or holding overhead to make the exercise more difficult. Repeat this on a variety of surfaces, such as tile, carpet, and standing on a foam cushion to strengthen the connections between physical movement and mental association. 3 Foot exercises: Toes and feet play an important role in balancing. Use your toes to pick up small objects, like marbles or tissues, off the floor. This strengthens the calf and intrinsic muscles of the feet. Do this 5 to 10 times on each side. 4 Balance: Walking in a heel-to-toe pattern forward and backward. Take 5 to 15 steps in each direction. As you train, be aware of your MS symptoms. Challenge yourself but do so in a safe environment

What is a pseudoexacerbation?

There is no evidence whatsoever that exercise in persons with MS can lead to an exacerbation. As a matter of fact, in studies of persons with MS who exercise aggressively there was no higher incidence of exacerbation than non-exercisers.

Gratitude is the fairest blossom which springs from the soul.

Henry Ward Beecher

Tai Chi

Tai Chi is a wonderful approach to balance training. The research has been very, very clear that persons with MS, when they use Tai Chi as balance training that it does improve their balance.

Find a place inside where there's joy, and the joy will burn out the pain.

Joseph Campbell

Fatigue

Fatigue: a complex symptom of MS

• Common disabling symptom

• Up to 75% of MS patients affected

• Worst complaint in 14-40% (50-60% ?) of MS patients

• Lack of physical, mental energy

• Tiredness following ordinary exertion

• Unrelated to effort, especially during relapses

• Transient or chronic, isolated or linked to relapses

• By definition, not a relapse by itself

• Circadian pattern

• Interferes with normal activities

• Major limiting factor in social, familial,

professional activities: ↓ quality of life

• Not restricted to relapsing periods

• Not strictly related to the handicap

based on EDSS

• Intensive inpatient rehabilitation trial ↓

fatigue in MS

Fatigue scales

o FSS (Fatigue Severity Scale, Krupp et al., 1989)

o FAI (Fatigue Assessment Instrument, Schwartz et al., 1993)

o FRS (Fatigue Rating Scale, Chalder et al., 1993)

o FIS (Fatigue Impact Scale, Fisk et al., 1994)

•MFI (Multidimensional Fatigue Inventory, Smets et al., 1995)

o FAMS (Functional Assessment of Multiple Sclerosis, Cella

et al., 1996)

o MFIS (Modified Fatigue Impact Scale, MS Council, 1998)

o FDS (Fatigue Descriptive Scale, Iriarte et al., 1999)

o FSMC (Fatigue Scale for Motor function and Cognition,

Penner et al., 2009)

Non-pharmacological approaches to MS fatigue

• Acknowledgement of this MS symptom

• Learning to manage fatigue (practical arrangements in

daily living, adjustments in professional, familial and

social activities)

• Improvement of sleep

• Strategically timed daytime rest

• Regular physical exercise (avoid physical

deconditioning)

• Behavioral therapy (emotions and coping capacity

influence how fatigue is perceived)

• Recognition of favorable factors (e.g. cooling)

• Avoidance of predisposing factors (e.g. heat)

Treatment of MS fatigue

• Amantadine hydrochloride

– Marked or moderate improvement in 47% MS patients vs.

1% controls (Canadian MS Research Group, 1987)

– RA Cohen & Fisher, 1989: improvement in some aspects of

fatigue (energy level, sense of well-being, perceived attention

and memory, problem solving capacity) in 15/22 MS patients

– 100 mg qd or bd

– Caution: hepatic disease, heart failure, edema, hypotension,

seizures, glaucoma

– Adverse events: livedo retic., nausea, headache, insomnia,

dizziness, nightmares, confusion, edema, orthostatic

hypotension

Treatment of MS fatigue

• 4-aminopyridine (more effective than 3,4-AP), K+

channel blocker (Polman et al, 1994; not confirmed by

Rossini et al, 2001)

– Side effects: headedness, abdominal pain, confusion,

seizures

• Fampridine (4-AP prolonged release, 10 mg; Goodman AD

et al, 2009)

– Improvement of walking ability, speed

– Contra-indications: epilepsy,heartdisorders – Review

process ongoing in Switzerland

Treatment of MS fatigue

• Modafinil 200 mg/day

(Rammohan et al, 2002; Stankoff

et al, 2005; un-/–

Recommendation: 100 mg qd or

bd

– Side effects: agitation,

dizziness, headache, insomnia,

diarrhea, arrhythmia,

hypertension

– Caution: cardiovascular

disease, oral contraceptives

Treatment of MS fatigue

• Aspirin 1.3 g/day (Wingerchuck et al,

1998; 2005)

– Tested vs. placebo in 30 MS patients;

benefit of aspirin measured by the MFIS

and patient preference

• Randomized 3-arm study (Oken et al,

2004) suggests that:

– Participation to either yoga or

exercise class for a 6 month

period reduced the severity of

fatigue compared with a waiting

list control group

Spasticity

Spasticity

stiffness of the limbs resulting from increased muscle tone

Results from demyelination that occurs in nerves that regulate muscle tone. It most frequently affects the group of muscles known as the antigravity or postural muscles, which include the calf muscles, thigh, buttock, groin, and back.

-people with MS who are affected by weakness in the leg muscles, may find mild stiffness helpful in standing and moving. People often experience a worsening of stiffness the more quickly they move their limbs. So, one rule of thumb with spasticity is to move slowly and steadily.

Spasticity

84% are reporting at least some symptoms of spasticity

• 30% are suffering from moderate to severe symptoms

• 1/3 are modifying or discontinuing daily activities because of spasticity

• only 38% are taking medications to control their spasticity (60% DMT)

Spasticity

Spastic Syndromes in MS

Variable distribution- affects both upper and lower limbs

Decreased muscle tone of trunk Changing degree of spasticity depending

on activity, posture and time of day Combined with ataxia

Factors Increasing Spasticity • infections (urinary a.m.)

• pressure sores• pain (even if not perceived by patient)• thrombosis• bladder disturbances, obstipation• fatigue• temperature (heat, cold)• posture (sitting in wheel-chair, supine position)

• emotional stress, anxiety

Tips from Others: Cramps

Muscle cramps can be helped by adding potassium: Melon is a good source.

organic, unfiltered apple cider vinegar made into a drink is also very helpful

Eat bananas and broccoli

Cramps: Tips cont.

Potassium, hydrate with an electrolyte. Gatorade, or Nuun. Hammer makes a product called Endurolytes as well.

Drink healthy teas. Gatorade (as long as the cramps

are not bad), soma for bad cramping Stay hydrated! Pickle juice is great…Old natural

remedy

Cramps: Tips cont.

tonic water. It is the quinine in the tonic water that makes them go away. Diet tonic is horrible, go for the real stuff.

For the Dysesthesias that can involve a girdle band-like pressure, drink any hot liquid. This causes me severe sudden pain and this is the only way that I can get relief but it helps instantly

Cramps: Tips cont.

For bad pain make a massage oil from 2 tea bags and 1/2 cup of canola oil that has been sitting in the sun for a day either out-side or on windowsill. You can use whatever teabags you want. For pain treelike peppermint

Cramps Tips Cont.

Meditate on the muscle that is cramped Deep breathing Ice packs

Meds

Flexeril Robaxin Valium (night) Baclofen Gabapentin dantrolene Magnesium Voltaren cream

Neurotoxin injections

Pros• effect limited to treated muscles • no effect on other muscle groups, no generalized side-effects • well tolerated

Cons ● invasive ● limited to few

muscle groups ● increased

weakness ● transient effect ● high costs

Headache

Headache

Headache is a common problem for people living with multiple sclerosis (MS) - many report suffering from migraine and/or tension type headache. A survey focusing on migraine in people with MS noted that 41% met the study criteria for migraine, compared with about 10% of Canadians in the general population.

MS patients with headache tend to have developed MS at an earlier age, and to have significantly higher rates of relapses and pain-related complaints compared to those who don't have headache. Migraine seems to occur more often in younger people with relapsing-remitting MS, while a smaller proportion of tension-type headache tends to affect individuals who are older, male, and have secondary progressive MS.

Despite the link between MS and migraine, it is not clear if headaches exacerbate MS, or if MS contributes to migraine-like headaches.

Studies comparing MRI scans of MS patients with headache to those with no headache have observed a non-significant association between a greater number of mid-brain plaques and an increased likelihood of headaches, especially headaches with migraine characteristics.

What Type is Your Headache?

Tension Cluster MIGRAINE

Tension

Less common Temporal areas Treat with anti inflammatories

Cluster

100% on ONE side Males older drinkers Night Severe

Migraine

With aura 15% Without aura 85% Usually have one side more common Throbbing 4 hours to many days nausea Light sensitivity Try triptan

Migraine Triggers

Food Wine Smells Sleep deprivation Stress Hormonal changes Vog

MS medications and headache!It is not clear as to whether or not the class of interferon beta (IFNB) medications increase the frequency and duration of headache. Some studies have noted newly devil- oped headaches or an increase in existing headaches in individuals when they begin taking an IFNB for MS, while other studies have seen no difference in headache between patients taking and not taking IFNBs. Studies of headache in patients taking COPAXONE® (glatiramer acetate) or an INFB have suggested that the increase in headache seen with IFNBs compared with COPAXONE® may be due to the different brain pathways used by these drugs.

Migraine Treatment

Herbals

magnesium 800 mg a data

B2 400 mg a day

Butterbur extract

-Triptan for rescue

-Preventives

Review

Balance Fatigue Spasticity Headache

Love Story