Coping with Multiple Sclerosis

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Coping with Paroxysmal Symptoms

By: Cherie C. Binns, RN, BS, MSCN

For most people with MS, “paroxysmal symptoms” is not a familiar term. Paroxysmal symptoms are characterized by sudden onset, brief duration, and rapid disappearance. With patients exhibiting these events, brain wave studies do not identify them as seizures. These paroxysms may appear as brief twitching or spasms coming on suddenly and disappearing fully within seconds. They may or may not lead to an MS diagnosis. They are not “MS seizures.”

Here’s one example: I had a patient with MS who developed severe shaking leg spasms for about 20 seconds whenever we tried to reposition him. We were able to minimize this somewhat by letting him know we were about to move him, keeping hands in place for a few seconds before actually moving him, and not stopping if a spasm occurred until he was settled in the new position. This made it easier for him to relax and become comfortable.

Other examples of paroxysmal symptoms are:

• Sudden temperature shifts, also known as “hot flashes”

• A tic in the eyelid or lip

• Difficulty swallowing

• Problems finding the right word in the midst of a conversation or prepared speech

• Sudden emotional shifts that may be inappropriate in the moment but normalize rapidly

• Facial or tooth pain after eating or drinking something very hot or cold

• Shooting pains in an arm or leg, hand or foot, that do not linger but may be severe enough to almost take your breath away

Some of these symptoms have triggers such as:

• Fatigue

• Sudden change in position

• Sudden temperature changes

• Sensory stimulus such as touch

• An emotional or physical stimulus

In people with MS, paroxysmal symptoms may signal the onset of a relapse if they appear without warning and last for several days. This is especially true if accompanied by other continuous symptoms such as fatigue, vision changes, bowel and bladder changes, or any of the symptoms that usually indicate a relapse for the individual. If you have not experienced any of these before and suddenly notice twitches or spasms, shooting pains, or other events that last only seconds then are gone, this should be brought to the attention of your neurologist.

Treatment for these paroxysms depends on whether or not they interfere significantly with your normal routine and comfort or whether they are minor annoyances that can be taken in stride. Your healthcare team will want to rule out causes other than MS for the symptoms before prescribing treatment. 

Things that may be examined are dental problems with tooth or facial pain, hormonal imbalances with “hot flashes,” or diabetes with foot or hand pain. There are very effective treatments available that can be used for a period of weeks or months to address and control the symptoms, and then may be tapered and stopped, in some cases.

Most of the effective medications for paroxysmal symptoms come from the anti-seizure drug group or the tricyclic anti-depressant drugs like Neuronitn®, Keppra®, Tegretol®, Elavil® or Deseryl®. Many of these effective treatments can be used in far lower doses (with fewer side effects) than the therapeutic dose for the condition for which they were initially used.

Also, a benefit some people discover when taking them is an improvement in sleep quality. This could be a side effect of the particular medication or the fact that paroxysmal symptoms are not interfering with sleep as they once did. In fact, many people do not realize that they are having these symptoms while asleep until they discover that the quality of sleep improves with treatment.

If you are being treated for paroxysmal symptoms and they have seemingly stopped, it may be time for a talk with your physician about cutting the dose or frequency of therapy to see if they return or if they have quieted to the point where you may come off the medication gradually. 

As with any of the symptoms experienced by people with MS, these can be very individualized and you may feel them a bit differently than others do. They could affect your lifestyle or work habits more or less than others with the same condition. For this reason, I have found that most people who treat these symptoms are quite willing to try treatments that can be tailored to the individual, to give maximum relief with minimal side effects or disruption of routine, while improving the overall quality of life. 

Cherie has been an RN since the early 1970s and has an additional degree in gerontology.  She became certified as a MS Nurse (MSCN) in 2003 and has been active in many of the MSF’s patient and nursing programs. She writes articles regularly for the website “MS Views and News” as well as an “Ask the MS Nurse” column. Diagnosed with MS in 1994 after nearly 20 years of episodic symptoms, she has taken many symptom management medications and disease-modifying therapies.

(Last reviewed 5/2010)

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