Welcome Members!

Welcome to Living with Narcolepsy Community!

Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.

 

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How is Ben’s Friends Different from Social Media and Other Support Sites?

Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.

We’re interested in you as a person, and in your struggles as a rare disease patient.  But we don’t want to know your name or where you live. We won’t even allow you to use your real name when you register for one of our communities. Because when it comes to medical things, anonymity is important in our googly universe.  Your information is never shared, and your activity never tracked by adware.

When Ben’s Friends asks for the country and region you live in, that’s in case your fellow members can recommend local resources and help, and so everyone knows what kind of medical system there is where you live.  That’s important when it comes to giving and getting support. Because we are all about support, and we’re all in this together.. 

Ben’s Friends: Safe and Supportive.  And anonymous to keep it that way.

 

Why create an account?

Posts on the different Ben’s Friends communities can be read by anyone on the internet. You can browse through the different topics and find most of the information you’re looking for but there are many things you won’t be able to do unless you create an account. These include:

Making your own posts. Although you’re able to find useful information just by reading other members’ posts, you might still have a lot of questions in your mind. Either you want to start a new topic to talk about them in detail or you want to reply to a comment on a thread. These won’t be possible unless you create a new user account.

Viewing other members’ profiles. Member profiles include information about the country or region they are from, whether they are a patient or a caregiver, and details about their disease and treatments. Maybe you came across an interesting post and you want to learn more about the member. Or maybe you’re looking for members who are from the same country as you. Having a user account allows you to see other member profiles and find information that may be relevant.  

Sending private messages. Aside from being able to post publicly and commenting on a thread, having a user account also allows you to send private messages both to other members and moderators. In case you want to discuss a topic only with a specific person, this is possible by sending private messages when you have created your account.

Click here to create an account and join.

 

  • Treating Narcolepsy Without Medication
    by Elsie13 on November 27, 2022 at 9:32 pm

    I’ve been on modafinil for Narcolepsy for over seven years now and have developed a lot of food intolerances and ‘leaky gut’ from taking medication over time. I’ve managed to reduce my dosage down to 100m twice daily but am wondering if it is at all possible to treat Narcolepsy without medications as I am concerned about taking them long term. I am scared to try anything as I fear I can’t function and live my life without them and everything is very stable and under control at the moment and I don’t want to mess with that. Nevertheless, I’ve been taking these pills daily for a long time now and know that if I don’t try anything different I will be taking them for the rest of my life. Has anyone found a way that works for them to manage the condition naturally? Are there alternative options to prescription medications? 2 posts - 2 participants Read full topic

  • New to this Forum - Medical Student with Type 2 Narcolepsy
    by sophialove on October 2, 2022 at 12:40 am

    Sharing my story! During my undergrad years, I always knew caffeine didn’t work on me. So I kept myself busy: volunteering, customer service work, research, etc. Many active activites. During my gap year, I realized coffee didn’t work at all. In fact, it made me more sleepy. I started medical school in the US and this is when I recognized this as a big issue. I slept 10 hours a night and still took naps b/c most my activites are passive (studying at home). I felt discouraged and disappointed in myself. I was passing classes but was losing motivation. Everyone was always studying and I wasn’t. I was depressed. I started seeing a therapist and psychiatrist. My Lexapro did help but I couldn’t help my sleepiness. Tbh, I felt kind of gaslit into thinking my sleepiness was a manifestation of my depression, even though I knew it wasn’t it. I went down a rabbit hole of resorting to illegal stimulants to keep myself up at night to study. After a few months, I finally saw a sleep doc. Even here, I felt like she was against diagnosing me with Narcolepsy. She said it isn’t common for Narcoleptic patients to not feel energized after a nap (for me, I take 2 hour naps and still feel exhausted). After my sleep study and clear diagnosis of Narcolepsy, I was relieved. However, my sleep doc is very unresponsive so it has taken weeks-months to finally figure out medications that kind of work for me (tried modafinil and now on adderall). I am more awake now, which is great since I’m headed into clinical rotations. But I am still depressed and lack motivation. I drink almost every night as an escape (though I can stop when I need to and know I will have to when I start rotations). My friends know about my narcolespy (not of depression and drinking) but they just don’t understand. I feel disappointed in myself. I don’t do as much as others because of my lack of motivation and I’m still sleepy in the early evening (yes before I drink; still working on med management). I am happy to have found this forum since it’s private to those with Narcolepsy (unlike reddit). I just feel so defeated. I’m going into clinicals soon and am scared to turn back into a robot where I just live life everyday unhappily. Any guidance or experiences or words of encouragement to those who may have had similar experiences in life? 2 posts - 2 participants Read full topic

  • Preparing for Your Doctor’s Appointment
    by BF_Writer on August 11, 2022 at 2:23 am

    Sascha Gallardo – October 13, 2020 Getting the most out of your consultation with a doctor for a rare disease is already challenging. Now that we are also dealing with the Covid-19 pandemic, the challenge has been doubled. Considering the difficulty of getting an appointment and the risks associated with going to a hospital and being exposed to the virus, it is important to be well prepared and accomplish everything that’s needed and avoid further appointments as much as possible. Below are some tips that you might find useful for your consultation. Prepare your medical history. Symptoms/complaints. What are your complaints or the symptoms that you are experiencing? Make a list of everything, even the most seemingly unimportant ones, including when you started experiencing them and how often. Do you notice the symptoms after eating certain food or doing certain activities? Do you experience them usually at nighttime or daytime? Existing conditions. Also, if you have existing conditions, put them on your notes as well as when they were diagnosed, the medications you’re taking including the dosage and the other treatments you currently undergo. Previous surgeries. Have you had surgeries in the past? When were they conducted and what for? Allergies. If you have any allergies, put them on your list and describe exactly what happens. Past medications. Also take note of any medications that you have stopped taking and the reason why you no longer take them. Recent blood work and other tests. Have you had any tests recently like radiology? Include them in your notes, the dates, and the reason why they were requested. List of doctors. Who are the doctors you have consulted in the past? Take note of their names, what you consulted them for, their clinic addresses, and telephone numbers. Medical records. Ideally, bring your medical records from previous consultations. If you don’t have them, it would be good to request a copy from your previous doctors, make a duplicate copy, and organize them in a binder with clear pockets. Getting all your records, however, might take a while and would require you to fill out request forms so it would be better to prepare them in advance. Ensure that your concerns will be addressed and properly recorded. Going out of the doctor’s clinic and then suddenly realizing you forgot to ask a couple of questions or forgetting what the doctor explained can be frustrating. To avoid this, prepare the following before your appointment: An audio recording device. Having an audio recording of everything that you have talked about during the appointment will definitely be useful. You can go back to it to verify information and ensure you are following instructions correctly. Before the appointment, test the audio recorder, make sure that you’re using fresh batteries, and that you have enough space in the memory card. It’s possible that you don’t have an audio recorder other than your mobile phone. This is also an option but you might want to set it on flight mode before your consultation, charge the phone, check the memory space, and test it beforehand. A pen and a notebook. Whether you’re bringing an audio recorder with you or not, it is still a must to have a pen and a notebook during your appointment. First of all, in the event that your recorder malfunctions (which can happen), you still have a record of the things that you have talked about. And even if it works properly in the end, you will still find your notes useful when you review the audio recording. You might have to skip listening to some parts and with your notes, you would have an idea which part of the recording you’re looking for. List of questions. Before the appointment, make a list of all the questions that you would like to ask your doctor. Write them down in bullet points so you can easily tick off each one. You might also want to leave some space in between questions where you can write notes. Pro tip from co-ED Clasina: Make two copies of your list of questions, and give one to the doctor as an “agenda”. This makes it less likely that items will be missed or you will “chicken out” of discussing a touchy topic for you. Aside from the items listed above, remember to also bring the following: Your driver’s license or any government issued ID Insurance card or information Necessary insurance referrals Now that you’re ready for the doctor’s visit, just a reminder that your doctor is working for you. In case you feel that they are not listening to your concerns or if you have doubts on their recommendation, you can always look for another doctor, someone you can trust and are comfortable to work with. 1 post - 1 participant Read full topic

  • How to prepare for a surgery
    by BF_Writer on August 3, 2022 at 7:40 am

    Sascha Gallardo – May 11, 2021 After so many doctors appointments, you finally have a diagnosis. And as part of the treatment plan, you have to undergo a surgery. Although each type of surgery is certainly different from the other and would require some specific preparations, having a general idea of what needs to be done before the operation can help you better cope both with the surgery and recovery. Below are some general recommendations when preparing for a surgery. 1. Ask your friends at Ben’s Friends Many of your fellow members in the Ben’s Friends community have already gone through the procedure you’re about to have. Someone might have already posted their experience including some of the things that they have learned from which others could benefit from. Make sure to search the site for related posts. If you’re not able to find previous posts related to your upcoming surgery, ask your fellow members any questions you might have and those that have gone through the same procedure would be happy to share useful information with you. 2. Get in good shape Improving one’s physical fitness before surgery can lessen the chances of complications and result in faster recovery. Doing some light exercises a few weeks before surgery, maintaining a healthy diet, and avoiding stress and anxiety triggers are just some of the ways to better prepare for an operation. Each one’s physical condition, however, is different so it is always important to consult your doctor on the type of exercises and diet most suitable for you. 3. Plan for restrictions that might result from the surgery Depending on the surgery you would undergo, there might be a few things that would be difficult for you to do while recovering. Some surgeries can affect one’s mobility so it might be good to rearrange a few things at home prior to it. If your room is upstairs, you might need to transfer downstairs in the meantime. If bladder control might be a problem, consider a work-around. You might also need to have easier access to the kitchen or have a big enough table in your room where you can place your meds and other necessities. If talking would be difficult for a while, you might want to keep a notepad and pen near your bed or ensure that you always have your phone so you can send a text message when needed. 4. List the things where you would need to ask help Of course, there would be instances where you would need help from other people. You might not be able to do household chores for a while or you might not be able to drive to buy medicine. Make a list of all those things and ask family members or friends if they could help. Also, make sure to have a list of phone numbers and email addresses of people who can help. This includes the names and numbers of your doctors. This will come in handy when your helpers need to contact them. The doctor’s receptionist is also a key person to know in case of a problem! 5. Make your room comfortable You might also want to consider preparing things that can make your room more comfortable such as blackout curtains, scented candles, special pillows, or a music player. And consider whether your bed will need to be raised to help you get in and out of it. Being able to relax and having a good sleep can contribute to better recovery. 6. Stocking up on appropriate food items What are the types of food you can and can’t eat after the procedure? For instance, solid food might not be ideal for you so it would be good to stock up on soup based food or protein shakes. You might also want to cook and freeze ahead as well as stock the ingredients that can be used by friends or family to make easy meals. 7. Shopping for essential supplies Imagine coming home from the hospital and realizing you’ve run out of toilet paper, laundry detergent and dishwashing liquid. It definitely won’t be a pleasant experience. It’s a good thing that deliveries have become popular these days and you can replenish your stash when necessary. But make sure to have enough that would last for at least two weeks so that you won’t have to think about them right after coming back from the hospital. If you’ve never done online grocery shopping, get good at it before you need it! I know, we all want to personally inspect and select our vegetables, but like surgery, sometimes you have to trust someone else to do what you can’t do for yourself! 8. Plan how to keep yourself busy while recovering The surgery will require you to stay at home for a while to recover. Not having anything to do during that period could not only make one bored, it also has a tendency to make you focus on negative things like worrying about side effects. To avoid this, you might want to plan in advance how you will keep yourself busy while recovering. You can buy a few books, sudoku or crossword puzzles, or a knitting kit. Maybe even try an online game with friends. Just make sure these activities won’t strain you but would help your mental health. 9. Prepare the things to bring to the hospital As the day of the surgery comes close, make sure to have a checklist of everything you need to bring to the hospital and prepare them in advance. These can include clothes, toiletries, plastic bags for soiled clothes and trash, and other things that are essential for you. But don’t overpack: after surgery you really won’t care whether you’ve got the right shade of lip gloss. 10. Check out your Ben’s Friends community Having to undergo surgery can be challenging. You might need to talk about it but no one seems to understand exactly what it is you’re going through. As always, your fellow Ben’s Friends members are always ready to hear you out. Whenever you feel the need to express how you feel, just make a post on the community site. If you or anyone you know are affected by a rare or chronic illness that is included in our list of communities, we invite you to sign up so that you can have a safe and supportive online community. Change the lives of patients and their loved ones by supporting Ben’s Friends via Patreon. Sign up here. 1 post - 1 participant Read full topic

  • Some tips on how to improve your mental and emotional health
    by BF_Writer on July 29, 2022 at 10:29 am

    Sascha Gallardo – June 7, 2021 Having a rare or chronic illness can be a source of stress. The different symptoms alone, even the mild pain and fatigue, can already lower one’s mood. Add to these symptoms the financial concerns, the worry about the treatment process, and not being able to do some of the things you love. Mental and emotional health are essential to physical well-being. Stress and negative emotions weaken the immune system which makes it even harder to cope with the illness. But there are things that can help you manage stress and help improve your mental and emotional health. It is important to emphasize, however, that in case of depression or severe anxiety, seeking professional help is extremely necessary. In this blog, we will talk about some tips on how to improve mental and emotional health. 1. Writing gratitude regularly Several studies have already been conducted on the impact of gratitude writing on mental health. A 2016 study, for instance, involved 293 adults undergoing psychotherapy. One group was tasked with expressive writing together with psychotherapy, another group was tasked with writing gratitude and psychotherapy, while the third group underwent psychotherapy only. Four weeks after the writing tasks ended, those who practiced gratitude writing had much better mental health compared with the two other groups. [1] So one good but very easy activity you can practice is writing gratitude daily. You may get yourself a simple notebook and write down the things you are grateful for such as having a roof over your head, air to breathe, and food to eat. Like in the study mentioned, you may also write it in the form of a gratitude letter for someone, even though you won’t actually send the letter. As you start this activity, you might want to begin with writing gratitude for as few as three to five things or writing for just 10 to 15 minutes. The idea is to make it as easy as possible for you. Forcing yourself to write for an hour might be a little daunting and you might lose interest and not continue the process at all. Also, keep in mind that it may take a while before you notice any positive results from this activity. In the study mentioned above, the group that wrote gratitude showed significant improvements four weeks after the conclusion of the task. [2] So in case at some point you begin to doubt whether the activity will actually result in some improvements, just try to keep doing it and enjoy the activity and soon enough you will start noticing the benefits. 2. Exercise regularly We’ve always known that regular exercise is good for our physical health. It keeps our muscles strong, it helps burn calories, and it lowers our blood levels, to name a few. But regular exercise is not only good for your physical health. It can also do wonders for your mental and emotional health. According to the article “How does exercise reduce stress,” it “reduces levels of the body’s stress hormones, such as adrenaline and cortisol. It also stimulates the production of endorphins, chemicals in the brain that are the body’s natural painkillers and mood elevators.” [3] Of course, you need to consult your doctor first about what types of exercise are ideal for you as well as the frequency and duration. Once that is taken cared of, you can start doing some light physical activity for a few minutes everyday. When it has become a habit, you’ll notice that it’s something you can’t not do anymore because you don’t feel as good if you don’t exercise. Meditate The practice of meditation has received a lot of attention in recent years. Not only do more and more people outside of East and South Asia (where the practice originated) began to practice it, researchers have also started to study its actual benefits. One such study was conducted by Elizabeth A. Hoge, MD, et. al. that was published in 2013 in The Journal of Clinical Psychiatry. [4] Hoge’s team compared the impact of Stress Management Education (SME) with mindfulness meditation or Mindfulness-Based Stress Reduction (MBSR) programs to individuals with generalized anxiety disorder. Although both methods resulted in significant improvements as measured with HAMA (Hamilton Anxiety Rating Scale), those who underwent MBSR exhibited lower anxiety levels as measured with Clinical Global Impressions-Severity of Illness scale (CGI-S), Clinical Global Impressions-Improvement scale (CGI-I), and the Beck Anxiety Inventory (BAI). If you decide to practice meditation, you may search for guided meditation videos online. As with gratitude writing, you might want to start with as short as five minutes daily. It’s also important to note that it’s totally fine if your mind wanders during meditation. As meditation programs like the Headspace Guide to Meditation would say, everytime you notice your mind drifting to a thought just acknowledge the thought that comes into your mind and return your focus to meditation. Learn something new Is there a new skill that you want to learn or a new topic you are interested in? Maybe you want to learn how to bake or cook. You might be interested in personal development in general, or maybe you have a business idea and you want to learn about starting a business. Tons of information about all sorts of topics are now available. You can either buy books or read and watch videos online for free. Once you have decided on a skill or topic and found resources, allot a few minutes each day for that. As you start, keep in mind that you don’t have to be an instant expert on the subject. Just enjoy the process of learning something new each day. Get enough Vitamin D Several studies have examined the relationship between inadequate vitamin D levels and depression. For instance, one research aimed to examine the effect of vitamin D supplements on overweight and obese subjects. [5] The 441 subjects were divided into three groups. Two groups were given vitamin D supplements while one group was given placebo. Improvements in depression symptoms were observed among those who received the supplements. There are different ways our body can get vitamin D. One is through the food we eat and another is through exposure to sunlight. Make sure to add in your diet some foods that are rich in vitamin D such as fatty fish like sardines and mackerel. Also, sunbathing for a few minutes a day can be helpful. Just avoid overexposure as well as sunbathing at a time when it’s too hot as they may cause skin diseases like cancer. The ideal time would depend on where you are located such as whether you are near or far from the equator. It’s also a good idea to wear sunscreen and sunglasses and appropriate clothing. Aside from food and sunlight, you can also get vitamin D from supplements. It is important to note, however, that too much vitamin D can result in toxicity which may cause bone pain, vomiting, weakness, and kidney failure. [6] Make sure to consult your doctor first before trying any vitamin D supplements. Summary Having a rare or chronic illness is by no means easy and it can undoubtedly cause stress and anxiety. There’s also a possibility for stress to be experienced for a longer period especially since the stressor which is the illness is something they face everyday. However, the more stressed and anxious they are, the more difficult it will be to fight the illness. Writing gratitude, exercising regularly, meditating, learning something new, and getting enough vitamin D are just some of the things that can help you improve your mental and emotional help. Try some of these to help you fight some of the stress that comes with having a chronic illness. And as mentioned above, make sure to consult a professional when you feel that the stress is becoming unbearable and might progress to depression. NOTES [1] Wong, Y Joel, et. al. (May 2016). Does gratitude writing improve the mental health of psychotherapy clients? Evidence from a randomized controlled trial. Psychotherapy Research, Volume 28, 2018 – Issue 2. https://www.tandfonline.com/doi/abs/10.1080/10503307.2016.1169332?scroll=top&needAccess=true&journalCode=tpsr20 [2] Joshua Brown and Joel Wong. (6 June 2017) How Gratitude Changes You and Your Brain. Greater Good Magazine. https://greatergood.berkeley.edu/article/item/how_gratitude_changes_you_and_your_brain [3] How does exercise reduce stress? Surprising answers to this question and more. (July 07, 2020). Harvard Health Publishing. Exercising to Relax - Harvard Health Publishing - Harvard Health [4] Hoge EA, Bui E, Marques L, et al. (2013) Randomized controlled trial of mindfulness meditation for generalized anxiety disorder: effects on anxiety and stress reactivity. J Clin Psychiatry.;74(8):786-792. Mindfulness Meditation for Anxiety | Psychiatrist.com [5] Rolf Jorde, et. al. (Nov 2008). Effects of vitamin D supplementation on symptoms of depression in overweight and obese subjects: randomized double blind trial. Journal of International Medicine. https://onlinelibrary.wiley.com/doi/full/10.1111/j.1365-2796.2008.02008.x [6] Katherine Zeratsky, R.D., L.D. (April 17, 2020). What is vitamin D toxicity? Should I be worried about taking supplements? Mayo Clinic. Vitamin D toxicity: What if you get too much? - Mayo Clinic 1 post - 1 participant Read full topic