Hypo-Narco Survey

This site is a Questionnaire designed to study possible links between Hypokalemic Periodic Paralysis and Narcolepsy. To learn more about HKPP or Narcolepsy, just click the links below.

HKPP

Narcolepsy

This study is brought to you by:

The Regional Sleep Center

at Memorial Hospital
Chattanooga, Tennessee
(A Division of Catholic Health Initiatives)

Hit Counter

To All of our Hypokalemic Periodic Paralysis friends:

This survey is intended for persons who have been diagnosed with Hypokalemic Periodic Paralysis (HypoKPP). The purpose of the questionnaire is to investigate a possible relationship between HypoKPP and Narcolepsy. All data will be sent to and collected by Memorial Hospital's Regional Sleep Center.

Thanks in advance for your participation,

Robert Lindsey, MS, RPSGT
Michael Dunn, RRT, RPSGT
Thomas Devlin, M.D., Ph.D.
James Hora, M.D., Ph.D.
Regional Sleep Center at Memorial Hospital, Chattanooga, TN
(423) 495-8340

Hello fellow list members,

I would also like to thank everyone for taking part in this survey. I think it will bring attention to all the periodic paralyses as well as make future diagnoses easier for those out there who have yet to receive one. Also, the more we understand the periodic paralyses, the better we can be treated for them. Please take your time and answer the following questions as best you can, and, where appropriate, with a typed explanation. If you have any trouble understanding or filling out any of the questions, please e-mail me so I can fix the problem.

Thanks again and best wishes,

Mike (Hypo-Narco)

Please click SEND when finished.

Section One:

Name:

E-mail address:

Daytime Phone Number:

Age: Height: Weight (please indicate lbs. or kg.):

Are you Right or Left-handed?

Section Two:

In the space below, please provide a history of your experience with HypoKPP. Please include the age that your symptoms started, what your symptoms have been, how they have progressed, how you are treated, and any family members you may have with similar symptoms. Please type as much as you want. The dialog boxes are unlimited and won't cut you off.

Section Three:

1. Do you have or have you ever had an overwhelming feeling of sleepiness which comes and goes during your waking hours (Excessive Daytime Sleepiness)? Yes No

If "Yes", please elaborate below:

2. Have you ever fallen asleep uncontrollably or abruptly during waking hours (daytime sleep attack)?
Yes No

If "Yes", please elaborate below:

3. Have you ever experienced vivid dreaming shortly after falling asleep or upon awakening?
Yes No

If "Yes", please explain in detail:

4. Do you now or have you had a history of vivid dreaming or chronic nightmares during the night?
Yes No

5. Have you ever had episodes of total body paralysis upon awakening or when first falling asleep?
Yes No

6. Have you ever experienced partial or total body paralysis during the day, particularly after exercising or when emotional (happy or sad)? Yes No

7. Does anyone in your family have symptoms of excessive daytime fatigue, vivid dreaming, or episodes of paralysis occurring either at night, out of sleep, or during the day? Yes No

If "Yes", please elaborate:

8. Have you ever been treated for symptoms of or diagnosed with depression? Yes No

9. Have you ever had a formal sleep study (polysomnogram) or Mean Sleep Latency Test (MSLT also known as nap study)? Yes No

If "Yes", when and where did the test(s) take place? Please include any diagnoses such as apnea or Restless Leg Syndrome (RLS).

10. Have you ever been told that you have Narcolepsy or Cataplexy? Yes No

If "Yes", who told you and on what basis do you think they came to that conclusion?

11. Have you ever had an electrocardiogram (EKG) study? Yes No

If "Yes", have you been told by a physician that you have a long QT interval? Yes No

If "Yes" again, please elaborate in detail:

12. Is your HypoKPP managed by a neurologist or some other doctor? Neurologist Other Doctor

13. Have you ever had an Electromyogram (EMG) or a Nerve Conduction Study (NCS) to confirm your diagnosis of HypoKPP? Yes No

If "Yes", would you be willing to provide the results? Yes No

14. Please list all medications you are currently being treated with or others that have been prescribed for your HypoKPP or Narcolepsy.

15. Have you ever had genetic testing to confirm your HypoKPP? Yes No

If "Yes", what type are you?

Also, would you be willing to provide the results? Yes No

Well, that's all of the survey. If you are finished, please click the SEND button below. Please make sure that you answered all the applicable questions thoroughly before sending the information.

Again, we all wish to thank you very much for participating in our survey.

Sincerely,

Robert Lindsey, MS, RPSGT
Michael Dunn, RRT, RPSGT
Thomas Devlin, M.D., Ph.D.
James Hora, M.D., Ph.D.
Regional Sleep Center at Memorial Hospital
Chattanooga, Tennessee
(423) 495-8340