How to Find the Right Doctor When Living With KLS

How to Find the Right Doctor When Living With KLS

Every KLS case is similar yet so different. What may help one person, may not work for another. The brain is so complex not every person’s reaction to a treatment is going to be the same. You may need to experiment with different medications and dosages to help you with your symptoms. That is why it is so important to find a good, compassionate doctor who is right for you. Finding the right doctor needs to be a top priority. Once you find the right doctor that is willing to work with you, your quality of life may improve, your health care will improve, you will feel safe sharing information, and you will know that your doctor cares about you. Finding the right doctor for KLS is not going to be easy. It will take effort and patience. A good way to begin your search is to use information from your current doctor’s experience. If you are seeing a doctor at the moment and are unhappy with the care you are receiving, ask yourself these questions. 1) What do I like about my doctor? 2) What don’t I like about my doctor? 3) What type of environment do I want? Writing down your likes and dislikes will provide you with a good list of what you want in a doctor.

How to Find the Right Doctor When Living With KLS

How to Find the Right Doctor When Living With KLS

Because KLS is rare, it may be difficult to find a doctor who knows about KLS. A good starting point is going to the KLS Foundation website and looking at the Doctors Familiar with KLS page to see if there is a doctor in your area familiar with the disorder. Here is the link: http://klsfoundation.org/doctors-familiar-with-kls/

If there is no one on the doctor’s list in your area, try calling one of the doctors closest to your area from the KLS Foundation’s list and ask for a doctor’s recommendation in your area. Or you could ask if that doctor would be willing to see the KLSer. You could search for a Sleep Specialist or a Neurologist in your area. Many Neurologists and Sleep Specialists are interested in rare conditions and would love the opportunity to work with you. Another suggestion is to ask for referrals in the KLS support groups. You can join the KLS Support group by clicking here: KLS Foundation Facebook Support Group. There may be a KLSer in your area who will know of a doctor familiar with KLS.

Doctors see many patients throughout the day, so you need to be prepared and ready for your appointment. When scheduling your appointment to see a doctor, ask how many minutes your appointment will be. Try to schedule enough minutes to get through all your concerns. Be prepared with a list of questions you want answered. An example might be, “What medication can relieve this symptom?” Be prepared to write down important points. Ask the doctor to write down any treatments, symptoms, medications, etc. you may want to research for yourself so that you can decide if that is the approach you would like to take. Having someone with you at your appointment is very important. That person will be your second set of ears and will be able to catch things you may have missed. Remember-you are the expert on KLS. You know your symptoms, your body, and your experiences. The doctor knows treatments. After you decide on a treatment together with your doctor, be sure to evaluate how that treatment is working. Stay on top of your medical decisions and be proactive in your care.

I hope you found this post helpful! If you did, please leave a comment below. I love hearing from you!

With Love,

Alanna

P.S. If you haven’t purchased the Kleine-Levin Syndrome (KLS) Guidebook, you can do so here: http://alannawonglife.com/shop/klsguidebook/ 

Read Disclaimer here: http://alannawonglife.com/disclaimer/

Somus Memory Foam Pillow Review & Alanna’s Tips to get a good night’s sleep!

Somus Memory Foam Pillow

Somus Memory Foam Pillow

Somus Memory Foam Pillow Review

It is a known fact that on average human being’s sleep a third of their lifetime. Therefore, it is critical to find the right sleeping products to help you get a good night’s sleep! Getting a good night’s sleep is vital for your health and offers a wide range of benefits for your body and mind. I came across the Somus Sleep Pillows and had to try them out. Somus company was kind enough to give me a set of very comfortable, high end luxury pillows to try! Keep reading to learn more about the benefits of sleep, how to get a good night’s sleep, and the Somus sleep products! You can purchase the pillows here: Somus Store

Why Somus? The Somus memory foam pillows are the finest choice when searching for a comfortable pillow! Whether you sleep on your stomach, back, or side the Somus Supreme Memory Foam pillow can adapt according to your body and provide a comfortable experience. One of the best features about the Somus Supreme Memory Foam Comfort pillow is that it comes with a hypoallergenic memory foam layer. This layer has the ability to conform your neck and head, which can assist your body to alleviate pressure points and enjoy a peaceful night’s sleep. They help tremendously with neck support! The Somus Comfort pillow has embedded bamboo charcoal and is combined with mesh siding to boost air into the pillow. It also absorbs odors, provides natural air moisture, and allows for excellent airflow. Traditional pillows are not in a position to cater to these important keys so that may be the reason why you may not be getting a relaxed and peaceful sleep if you are using a traditional pillow. Check out the pillow here: Somus Store

Apart from the Somus pillows, the memory foam luxury mattresses that are being produced by Somus are high quality. When you combine the Somus pillows with their mattress, you will receive a perfect blend of support and comfort. This mattress comes along with a quilted bamboo cover, which makes it soft and breathable. The memory foam that can be found in this mattress is made from raw materials that were obtained from Canada and USA. The two layer construction of this mattress is impressive and it plays a major role behind the functionality. It consists of 6 inch support foam at the bottom and 2 inch memory foam at the top. The bamboo cover will keep your body cool throughout the night and you will never feel any discomfort.

As you can see, Somus sleep products offer everything that you need to have in order to enjoy a peaceful night’s sleep. They provide excellent support to your body and you will not have to suffer from any negative side effects after some time. These sleeping products are marked at affordable prices. I highly recommend you purchase their products here: In fact, the money you spend to buy Somus sleep products will be a great investment towards your future health! The following link is where you can purchase the Somus Pillows: Somus Store

Reason Why Getting a Good Night’s Sleep is Vital:

  • Sleep helps to restore your brain.
  • Sleep helps form new pathways to assist with learning and retaining information.
  • Sleep can improve your memory.
  • Sleep can help you maintain a healthy weight.
  • A good night’s sleep can lower stress.
  • A good night’s sleep helps your immune system stay strong.
  • A good night’s sleep can help with creativity.
  • A good night’s sleep can improve your attention and focus.
  • A good night’s sleep improves learning.
  • A good night’s sleep is key to feeling energized for the next day.
  • A good night’s sleep can improve the quality of your life.

 

How to get a Good Night’s Sleep?

  • Picking out the right mattress for you, is critical to get a good night’s sleep. Check out a list of my favorite mattresses here:
  • A comfortable pillow is critical to get a good night’s sleep. Check out the following pillows that I love:
  • A cool room with good air flow can help you get a good night’s sleep.
  • A dark and quiet room can help you get a good night’s sleep.
  • Keeping your room clean can help you get a good night’s sleep.
  • Taking a warm bath may help you with getting a good night’s sleep.

I hope you enjoyed this post! Comment below and let me know how important sleep is for you.

With Love,

Alanna Wong

N-StyleID Medical ID Band Giveaway!

N-Style ID

N-Style ID

Medical ID alert bands can be considered as one of the most helpful tools that an individual suffering from a medical condition can have. It can show others that the wearer is suffering from a specific health condition. N-Style ID bracelets are the most popular type of medical ID alert band that can be found in today’s world. Many people are aware about the fact that a medical ID bracelet can save the life of a person, and it is helpful for a person living with a condition to have a medical ID band! I have teamed up with N-StyleID.com to giveaway a credit of $75! You can enter the contest below! Keep reading on to learn more about N-Style ID.

a Rafflecopter giveaway

The medical ID bracelets at N-StyleID.com are available as men’s bracelets, women’s bracelets teens bracelets and kids’ bracelets. Therefore there is something for everyone in their collection of medical ID alert bands. Why do you need to purchase medical ID alert bands from N-Style ID? The medical ID bracelet has the ability to hold all the important information about your condition. There is a wide range of bracelets to choose from. There are sleek, modern, casual, fashionable, fun, hip, and classy bracelets to choose from! There is a medical bracelet for every occasion! The medical ID bracelets are made out of stainless steel and other related materials. Therefore, you don’t need to worry about their look or durability. And the prices are very reasonable! Everyone can afford a band from N-Style ID! The bracelets come with FREE engraving which is a huge bonus when purchasing a Medical ID band. N-Style ID also makes bands for non-medical people. If you are going on vacation and taking your kids, it would be smart to pick out one of their non-medical ID bands so that if anything were to happen, they have contact information on their stylish ID bracelet. Check out their kids selection of bands here: http://www.n-styleid.com/children.html

N-Style ID

N-Style ID

More than 100 million people in the U.S. alone live with a chronic condition! Medical ID bracelets play an important role in society and every person who has an illness could benefit by purchasing one. N-Style ID is the perfect place to shop for medical ID alert bands, and you can purchase from them without any hesitation. I hope you choose N-Style ID when purchasing your medical bands/ID bands! If you haven’t already entered the contest at the top of this page, be sure to do so! It’s your chance to win a $75 credit to N-Style ID! Good luck! Also, be sure to connect with N-Style ID via social media if you haven’t already done so! The following are their social media channels: BlogFacebook. Pinterest. Twitter. Google Plus.

I hope you enjoyed this post!

With Love,

Alanna Wong

7 Tips to help with sensitivity to light and noise

tips7 Tips to help with sensitivity to light and noise

There are many chronic conditions in this world. In a recent centers for disease control and prevention article, they stated that “As of 2012, about half of all adults—117 million people—have one or more chronic health conditions. One of four adults has two or more chronic health conditions.” You can read the full article here: http://www.cdc.gov/chronicdisease/overview/ I know that my condition comes with sensitivity to noise and light. I’ve also heard of other chronic conditions experiencing symptoms of sensitivity to noise and light too. I want to share with you some tips that I have found to be helpful coping with these symptoms.

Watch TV and movies with subtitles if you are sensitive to noise. When I was ultra-sensitive to noise, my caregiver (my mom) would set the TV to where she would watch it with subtitles. That helped keep my brain quiet and she was still able to watch TV. It’s important to keep your mind calm and quiet when dealing with sensitivities to noise.

Identify your triggers. You may only be bothered by certain noises, so it’s important to know your triggers. Whether its programs with suspenseful music or big crowds of people, you will need to know what noises bother you so you can limit them. Do your best to limit and avoid the types of noises that are triggers.

When going outside, where sunglasses. If you are sensitive to the light, it is critical to protect your eyes by wearing sunglasses. I am giving away a free pair of black polarized Bamboo Hybrid Sunglasses. You can enter to win them here: Polarized Sunglass Giveaway – 2 Winners and here: Brand Name Sunglasses/Prescription Glasses Giveaway – 8 Winners! 

Keep your cell phone on vibrate. Instead of having a ringer, you can put your cell phone on vibrate. This will help limit the noise.

Draw the curtains. During the day, the sun can get very bright in some homes. If it gets bright and you are sensitive to light, it’s helpful to draw the curtains so that you do not have a sun glare.

Be honest. If your symptoms are acting up and you are with others, it’s best to be honest. Explaining your situation will most likely be of benefit to you because the people around you can be more sensitive and understanding. People may not understand you facial reactions to the stimulation around you. Just being in the sunlight can cause my eyes to tear.

Don’t have multiple things on at once. When you are home by yourself, or in the car, you have complete control over the noises, so be sure to limit them. Don’t have the TV and music on at the same time. Limit your noise. Focus on one thing at a time instead of having multiple noises and devices on. It will lead to a more peaceful and quiet environment.

I hope you enjoyed this post! Comment below with any other tips you have if you are sensitive to noise and light! And be sure to enter to win a pair of sunglasses here: Polarized Sunglass Giveaway – 2 Winners and here: Brand Name Sunglasses/Prescription Glasses Giveaway – 8 Winners! 

With Love,

Alanna Wong

5 Reasons Why You Should Track Your Progress When Living With Chronic Illness

Track Your Progress

Track Your Progress

5 Reasons Why You Should Track Your Progress When Living With Chronic Illness

It is so important to track your progress and milestones when living with a chronic illness. Whether you decide to track your treatment plan, health, fitness, emotional well-being, food intake, etc., tracking your progress will be beneficial to you and your health. Below I share with you 5 reasons why tracking your progress is so important! I also have a surprise for you in this article so be sure to read the whole article!

Tracking your progress will let you know if your plan is working for you. This will help you be able to tell over time if something is helping you in your health or making things worse. If your plan is not working, you will be able to make changes. You want to know if something is helping you or making you worse and the only way to know is to track it.

Tracking your progress shows you how far you have come since tracking your first goal. Seeing your progress and how far you have come since setting a goal gives you an instant boost of confidence!

Tracking your progress helps you stay focused on the positives instead of negatives. It is very common to forget your milestones if you do not keep track of them. Keeping a log of your progress will help you reach your milestones. Tracking your progress will show you what you have accomplished so far! Seeing what you have accomplished will make you feel good about your progress! Misfit is a great way to help you stay focused on your health and fitness goals. I am giving away a free Misfit tracker to help you keep track of your goals. You can enter the contest here: http://woobox.com/z67oms

Tracking your progress tells you what is helping you the most. When you track your progress you are able to know what is helping you most and what isn’t. You can then eliminate what isn’t helping and stick with what is helping you.

Tracking your progress keeps you motivated. Tracking your progress keeps you motivated to keep going! When you see your successes, it makes you want to work that much harder to attain your next milestone!

I hope you enjoyed this post! Please comment below to let me know you were here! If you would like a personal activity and sleep monitor that is stylish, enter here: http://woobox.com/z67oms

With Love,

Alanna Wong

 

 

2015 Hypersomnia Conference

2015 Hypersomnia Conference

2015 Hypersomnia Conference

2015 Hypersomnia Conference

I am so pleased to announce that the Hypersomnia Foundation is hosting the 2015 Hypersomnia Conference! The theme of the conference is, “Building Our Future Together!”  I am honored to be speaking about KLS at the conference!

The conference will be held on Friday July 17, 2015 – Saturday July 18, 2015 at Emory Conference Center Hotel. Emory Conference Center Hotel is located at 1615 Clifton Road, NE, Atlanta, Georgia 30329.  Tickets are on sale NOW!  To register, click on the following link: http://www.hypersomniafoundation.org/about-us/annual-hypersomnia-conference/2015-hypersomnia-conference/

See video below:

Please share this event with anyone you know that could benefit from this event! And be sure to “like” the Hypersomnia Foundation Facebook Page if you haven’t already done so. You can “like” the page here: https://www.facebook.com/Hypersomniafoundation Thank you to Jenn Beard, Chair of the conference committee for the 2015 Hypersomnia Conference, for the information! 

With Love,

Alanna Wong

Alanna Wong’s Trial Medication- Flumazenil

Alanna Wong’s Trial Medication

In November of 2012, Dr. David Rye, Emory University School of Medicine’s professor of neurology and director of research for Emory’s Sleep Program finished a study and found a treatment for people living with hypersomnia. The results of the study are here: http://stm.sciencemag.org/content/4/161/161ra151

But for a better understanding of his work, I suggest you read the following article: http://www.lastwordonnothing.com/2012/11/22/re-awakenings/

I had done some research on this treatment, flumazenil, in November of 2012, but at the time, I could not get my hands on the medication. I have been following the progress of flumazenil in some patients that are using it. And their results have been very positive. The finding from the study is that the cerebrospinal fluid in some patients with hypersomnia has a substance that acts like a sleeping pill. And flumazenil is the medicine that is used for waking up patients that have undergone anesthesia or for patients that have overdosed on diazepam medications. So flumazenil was used and some of the patients woke up on it.

I contacted my doctor about one month ago concerning using the medication on a trial basis. Back in 2012, flumazenil was only offered via injection. However, today it is in a cream form. My doctor agreed and I have been using flumazenil for over 30 days now. Since my appendix surgery and tooth work (crown and root canal) both of which anesthetics were used which put me into an episode, I have been struggling. It is true that my episodes are not as deep as they were, but I still have been living in a dream-like, semi-conscious state for the better part of 7 months (sleeping 12-18 hours per day) with a few weeks of health here and there. I have been keeping a very detailed log of my experience with flumazenil. And for me the experience so far has been very positive. I have been AWAKE for over one month now. I know some people will wonder if this is a coincidence, but I can feel myself falling sick (dream-like) when the flumazenil wears off, I apply the cream, and within minutes I am feeling better-Awake! If I am not taking what I need, I will be sick. And the medicine has instantaneous impact.

I understand that this may or may not work for some people. And only time will tell the long term efficacy of this drug.  But because our illness is so rare, it is very difficult to find the funding for a treatment or cure. It takes ten to fifteen years for a drug to go through the process of biological discovery to FDA approval. And this drug has already been approved for human use by the FDA. The drug is being used as a repurpose drug for hypersomnia now. I feel it is important to be transparent with this trial because one way people with rare illnesses can be helped is through the exchange of information.

There have been no negative side effects for me! There is concern about mixing flumazenil with diazepam as one medical research paper stated that someone went into seizure who was being treated with flumazenil for a diazepam overdose; however, it is not clear if the flumazenil or the diazepam caused the seizure. If you want to learn more, please seek medical advice as I am not a medical professional in any way.

To everyone negatively impacted by hypersomnia, know that hope, support, and advocacy can lead to a treatment and a better quality of life. I don’t know if this medicine will work for you, and I don’t know if it’s the right medicine for you to try, only you and your doctor can decide that. But I do know that being transparent and sharing information is how we can help each other.

I am so grateful for Dr. Rye’s work and the work of all the researcher’s at Emory University. They are thinking outside the box and discovering a new way of looking at hypersomnia.

And one last thing, it is so important to find the right doctor for you. My doctor (DR. Nathaniel Watson) works with me to find solutions, he is a good listener, he genuinely cares about his patients, and he is open to discussion. Look for those qualities in a doctor so that you can find a treatment that works.

If you have any questions, please feel free to contact me.

With Love,

Alanna

Disclaimer: No content included herein is intended to be interpreted as medical advice. Alanna Wong and AlannaWongLife.com are not a medical adviser and do not provide personal medical advice. Alanna Wong and AlannaWongLife.com exists for educational purposes only. You hereby agree and understand that Alanna Wong and AlannaWongLife.com do not offer any medical advice and that you are responsible for consulting a medical professional if you have or think you have Kleine-Levin Syndrome, hypersomnia, or if you have any medical issue you are concerned about.

Importance of making time for our loved ones!

Importance of making time for our loved ones!

Importance of making time for our loved ones!

 

“Importance of making time for our loved ones!”

Family Time Day Planners Store!

It is so important to make time for our loved ones especially in today’s day and age where we are running a mile a minute and are very busy. We must learn to make time for our loved ones even if we have busy schedules! I am fortunate that I was able to receive the Family Time Planner by Dotmine Day Planners to review. I want to share with you a few tips you can do to make time out for your loved ones!

We all have a choice. We all have a choice on where we are spending our time. Spending time with your loved ones is a choice of yours. Even if your day is packed full, you have a choice to text, call, or skype your family member’s even if only for a minute to let them know you are thinking of them. What about on your lunch break? Maybe you could invite them to stop by! Find ways to make time even if your day is full! We all have 24 hours in a day. Take a look at where your time is being spent. It may be helpful to log your activities (work and play) so you can see where your time is going. [Read more…]

Aurorae Yoga Mat & Meditation Candle Review – Alanna Wong

Aurorae Amazon Store

Aurorae Yoga Mat & Meditation Candle Review by Alanna Wong

I have been picking up a new activity that I absolutely love! The activity is Yoga! There is only one essential item needed to do Yoga – a Yoga Mat.  I have been in contact with a family business yoga company called Aurorae. And I received their classic yoga mat and an extra soothing item – a soy meditation candle with a lavender scent! I want to share with you a few reasons why yoga is important for the mind and body especially when living with a chronic condition. [Read more…]

Sterling Silver Turtle Necklace by Honolulu Jewelry Co. -Review

TurtleNecklaceSterling Silver Turtle Necklace by Honolulu Jewelry Company

It is so important to go slow and steady when living with a chronic illness. Taking one day at a time and realizing that life is not a race has kept me balanced. I am very fortunate that I was able to receive a sterling silver turtle necklace from Honolulu Jewelry Company. This turtle necklace will remind me the importance of going slow and steady during my healing years! I want to share with you 5 reasons why it’s important to go slow and steady when living with a chronic condition! If you would like to purchase jewelry from the Honolulu Company you can do so my clicking on the pictures at the bottom of this page!  [Read more…]

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