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Topic Suggestion Description

View Topic Suggestion Disposition (PDF) 50 kB

Date submitted: August 23, 2011

Briefly describe a specific question, or set of related questions, about a health care test or treatment that this program should consider.
For patients with Narcolepsy and sleep paralysis, is there an effective treatment that wont have bad side effects?
Does your question include a comparison of different health care approaches? (If no, your topic will still be considered.)
yes
If yes, explain the specific technologies, devices, drugs, or interventions you would like to see compared:
Medicines like Nuvigil, Provigil and Ritalin are Helpful for daytime sleepiness.
taking certain antidepressants at bedtime help prevent sleep paralysis.
What patients or group(s) of patients does your question apply to? (Please include specific details such as age range, gender, coexisting diagnoses, and indications for therapy.)
My question applies to adults that have both of these problems and have to take these medicines to able to work, go to school and have a normal life. The problem is that these medicines have bad side effects such as: high blood pressure and arrhythmia. Therefore, if the patient presents these side effects but cannot stop these medicines, the patient would have to take an additional medicine to control the side effects. in the other hand, what if the patient has already other health issues like hypertension or other heart problems and they still have to take all these medication to be able to function and work....?
Are there subgroups of patients that your question might apply to? (For example, an ethnic group, stage or severity of a disease.)
I am specifically referring to young adults because at this age it would be hard to take all these medicines work and go to school. is hard too keep a job if you have narcolepsy or to concentrate at school or not fall asleep.
Describe the health-related benefits you are interested in. (For example, improvements in patient symptoms or problems from treatment or diagnosis.)
if there are other people like me, and take all these medicines and still get headaches, arrhythmia, sleep paralysis and sleepiness during the day. this disease is not very common and the treatments are not consistently effective and also cause other serious health problems. what are the other options? how can person like me find help?
Describe any health-related risks, side effects, or harms that you are concerned about.
I am 22 year old female that has narcolepsy with sleep paralysis. because of them I get very bad migraines, day time sleepiness, sleep attacks and some jerky movements while fall to sleep. for those problems that I just mentioned i take amitryptaline, protriptaline and nuvigil. As a consequence, taking these three medicines made me have tachycardia and so when that happened the doctor put me on atenolol. However, I have raynaud's phenomenon and was also diagnosed mctd and unfortunately atenolol is the only medicine that controls my tachycardia, but at the same time worsens the raynaud's .
I am speaking for myself. i am only 22 years old and i try to eat healthy and stay fit but i wonder how much more are all these medicines going to affect me as i age. i know my doctor can't really give an answer but i am young and i want to be nurse practitioner and i also want to keep my job. but, this disease is hard to control and the medications cause more problems. I want to be normal and study. I think there should be other treatments... some treatments that wont affect me like that. I think doctors should research these disease and find different treatment.

Appropriateness for EHC Program

Does your question include a health care drug, intervention, device, or technology available (or likely to be available) in the U.S.?
unsure
Which priority area(s) and population(s) does this topic apply to? (check all that apply)
EHC Priority Conditions (updated in 2008)
  • Cardiovascular disease, including stroke and hypertension
  • Functional limitations and disability
AHRQ Priority Populations
  • Women
Federal Health Care Program
  • Other

Importance

Describe why this topic is important.
This disease is an important topic because it could affect an individuals life many ways and also could become a disability.
What specifically motivated you to ask this question? (For example, you are developing a clinical guideline, working with a policy with large uncertainty about the appropriate approach, costly intervention, new research you have read, items in the media you may have seen, a clinical practice dilemma you know of, etc.)
I was motivated to ask this question, because I have this condition and my is hard to keep a job if you getting sick, the cost of the medications and follow up visits is very high, my relationships with friend and family are not good because i am always sick. also, I have gone to different doctors and don't get a lot amswers.
Does your question represent uncertainty for clinicians and/or policy-makers? (For example, variations in clinical care, controversy in what constitutes appropriate clinical care, or a policy decision.)
yes
If yes, please explain:
My neurologist told me that this the best treatment and I just have to live with side effects and limitations because there is nothing else.

Potential Impact

How will an answer to your research question be used or help inform decisions for you or your group?
I think this would provide me and other people with my problem a better treatment and hope that maybe a the medication list could be reduced and a better quality of life.
Describe the timeframe in which an answer to your question is needed.
I really don't have a time frame, I just wanted to the opportunity to ask the question and to be heard.
Describe any health disparities, inequities, or impact on vulnerable populations your question applies to.
well, I want a medicine or treatment that wont make vulnerable to other diseases and that wont create other health issues. because the problem is that if a person with this condition wants to be able to drive, work, go to school or do any activity that involves focus, concentration and movement, this person has to take this medicines to keep up with their life.

Nominator Information

Other Information About You: (optional)
Please choose a description that best describes your role or perspective: (you may select more than one category if appropriate)
  • Patient/Consumer
  • Other Health Care Professional
Are you making a suggestion as an individual or on behalf of an organization?
Individual
Please tell us how you heard about the Effective Health Care Program
http://www.ncbi.nlm.nih.gov/pubmedhealth/