Stories
The Mighty is powered by people who get it. Search by condition to read stories based on fellow members’ lived experiences.

Story

Managing Treatment Resistant Depression With a Doctor You Trust

I don’t know if I recall a time in my life where I felt true joy. There are many years of my life that are blocked from my memory; the details are fuzzy, and there are vague memories of people coming in and out of my life periodically. When I was finally diagnosed with major depressive disorder in my early twenties after experiencing symptoms for several years, I thought it would be like treating a broken bone – see a doctor a few times, maybe take some medication, then  move on with my life. Little did I know that years later I would still be fighting this same battle. It has taken a lot to accept that I have treatment resistant depression. It’s been challenging to find a treatment plan that works for me. For some time, I thought the intensive partial hospitalization program (PHP) and intensive outpatient program (IOP) were working. Then, I relapsed and ended up in a psychiatric unit. Next, it was residential treatment, and for some time after I was discharged, I was okay. And then, I relapsed again. This led to more intensive treatment, some improvement, but then I felt myself falling back into a downward spiral.  To be clear, there is no right or wrong approach to depression or any other mental illness. What works for one person may not work for another. There is no one prescribed treatment that works for all patients with a diagnosis of depression. With each individual’s experience, treatment needs to be tailored. There is trial and error in treatment, as there is with medication and finding the right match for a treatment provider. Treatment is a puzzle — finding the right pieces that fit together to create a team that helps us reach our best. While there may be prescribed therapies that have worked traditionally, there is always continuing research that can contribute to widening the options for treatment of depression.  In all this, while battling my own thoughts, I also experienced something that I was not warned about or had ever heard about: emotional numbness. As a side effect of my medication which helped me manage the urges to hurt myself or take my own life, it also made me numb to everything. I did not feel much at all. I felt like my ability to find joy and light in my life were switched off. When I was on leave from graduate school, for example, I had no reason to go out at all. The one reason I even saw the sun for a few minutes a day was to take out my rescue pup for a walk around the block. Often, people say their pets saved their life. I know my rescue pup saved mine. My primary care provider at the time prescribed her as an emotional support animal because I left my apartment for no reason other than to visit the doctor and attend school. However, things continued to get worse. I stopped eating. I stopped taking care of my basic needs, maintaining a clean living space, and keeping up with my health. I stopped seeing people. When I did see someone, they had to come to my apartment and pick me up, sometimes physically helping me out of my apartment to remove me from isolation.  In a recent session with my therapist, we were talking about what it meant to have achieved what I have in my life. I shared my accomplishments with her — academic, athletic, awards — as well as all the activities I am involved in, and she asked how I feel about it. I could only respond with a shrug of my shoulders and “eh.” When she heard this, she shared something she recently achieved and said that it brought her joy and pride. I don’t have that experience. Being emotionally numb leads me to not feel any sense of pride in my accomplishments. Everything I do is a task, a box to check off on the to-do list of my life. I am not able to feel any sense of enjoyment because I am numb to my experiences and accomplishments.  It’s important to recognize the symptoms of emotional numbness because it validates the person’s experiences and feelings who lives with this numbness. Another reason why recognizing numbness is important is to keep the individual safe and out of harm's way. What I mean is this: when I feel numb, I want to feel so desperately that I sometimes let down my safety senses and purposely put myself in danger to simply feel.  It’s also important for you to find a healthcare provider you can trust and talk with about how your treatment resistant depression is affecting you. However, a provider that you can trust is hard to come by. When you find them, like I did with my primary care provider who advised me to get a support animal and now with my current therapist, you feel as if you can open up to them without judgment. When getting treatment for depression, being able to share openly and not feel like you are being judged helps create a bond with the provider. In turn, this helps with sharing your struggles truthfully and with transparency; it also helps the provider know what the best course of treatment is for you to take. Being able to speak honestly about your journey — the good, the bad, and the ugly — lets you paint a fuller picture of the story and allows you and your care team to find the best ways to support your healing where you can find your light again.

Story

Learn About an Add-On Treatment for “Off” Time in Parkinson’s Disease

Did you know that Parkinson’s affects 1 million people in the U.S., with 60k new people diagnosed each year? Watch the video above to learn more about treating “off” time in Parkinson's disease.  NOURIANZ® (istradefylline) is a prescription medicine used with levodopa and carbidopa to treat adults with Parkinson’s disease (PD) who are having “off” episodes. It is not known if NOURIANZ is safe and effective in children. Watch the video to see how NOURIANZ is the first and only add-on treatment for “off” time in PD that lifts the brake of adenosine. The exact way NOURIANZ works to treat PD is unknown, but it is believed to target A2A adenosine receptors. This helps to increase movement if you are experiencing “off” time. Visit NOURIANZ.com to learn more about treating “off” time in Parkinson’s with NOURIANZ. Important Safety Information Before you take NOURIANZ, tell your healthcare provider about all your medical conditions, including if you: have a history of abnormal movement (dyskinesia) have a history of psychotic thinking or behavior have reduced liver function smoke cigarettes or use other tobacco products are pregnant or plan to become pregnant. NOURIANZ may harm your unborn baby are breastfeeding or plan to breastfeed Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. NOURIANZ and other medicines may affect each other causing side effects. NOURIANZ may affect the way other medicines work, and other medicines may affect how NOURIANZ works. What are the possible side effects of NOURIANZ? NOURIANZ may cause serious side effects, including: uncontrolled sudden movements (dyskinesia). Uncontrolled sudden movements is one of the most common side effects.  hallucinations and other symptoms of psychosis. NOURIANZ can cause abnormal thinking and behavior, including: being overly suspicious or feeling people want to harm you (paranoid ideation) believing things that are not real (delusions) seeing or hearing things that are not real (hallucinations) confusion increased activity or talking (mania) disorientation aggressive behavior agitation delirium (decreased awareness of things around you) unusual urges (impulse control or compulsive behaviors). Some people taking NOURIANZ get urges to behave in a way unusual for them. Examples of this are unusual urges to gamble, increased sexual urges, strong urges to spend money, binge eating, and the inability to control these urges. If you notice or your family notices that you are developing any new or unusual symptoms or behaviors, talk to your healthcare provider. The most common side effects of NOURIANZ include uncontrolled movements (dyskinesia), dizziness, constipation, nausea, hallucinations, and problems sleeping (insomnia). These are not all the possible side effects of NOURIANZ. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088 or www.fda.gov/medwatch Please see full Patient Information for NOURIANZ. COMM-US-NOU-0040 Learn More

Story

How I Help My Patients Navigate Their PAH Journey

 Every pulmonary arterial hypertension patient is different. That's why Dr. Raval emphasizes working closely with your care team to better monitor, manage and set goals for yourself. Hear how he communicates with his patients to find a PAH treatment option that is right for them. You can view the transcript for Dr. Raval's video here. Please see full Prescribing Information and Patient Product Information. Please see Important Safety Information below. Want to learn more about UPTRAVI® (selexipag)? sign Up for more information Dr. Raval is a paid speaker for Janssen. The information does not replace or substitute medical advice from your healthcare providers. Please consult with your healthcare team for treatment and medical advice. IMPORTANT SAFETY INFORMATION Do not take UPTRAVI® if you take gemfibrozil because this medicine may affect how UPTRAVI® works and cause side effects Do not take UPTRAVI® if you are allergic to selexipag or any of the ingredients in UPTRAVI® Before you take UPTRAVI®, tell your healthcare provider about all your medical conditions, including if you: Have liver problems Have narrowing of the pulmonary veins (veins in your lungs). This is called pulmonary veno-occlusive disease (PVOD) Are pregnant or plan to become pregnant. It is not known if UPTRAVI® will harm your unborn baby Are breastfeeding or plan to breastfeed. It is not known if UPTRAVI® passes into your breast milk. You and your doctor should decide if you will take UPTRAVI® or breastfeed. You should not do both Are taking any other prescription or over-the-counter medicines, vitamins, or herbal supplements What are the possible side effects of UPTRAVI®? The most common side effects are: Headache Diarrhea Jaw pain Nausea Muscle pain Vomiting Pain, redness or swelling at the injection site with UPTRAVI® for injection Pain in arms or legs Temporary reddening of the skin (flushing) Joint pain Low red blood cell count Less appetite than usual Rash Talk to your doctor if you have a side effect that bothers you or does not go away. These are not all the possible side effects of UPTRAVI®. For more information, ask your doctor or pharmacist. You may report side effects to FDA at 1-800-FDA-1088 or www.fda.gov/medwatch. Keep UPTRAVI® and all other medicines away from children. What other medicines might interact with UPTRAVI®? UPTRAVI® and other medicines may affect each other, causing side effects. Tell your doctor about all the medicines you are taking. Do not start any new medicine until you check with your doctor. How should I take UPTRAVI®? UPTRAVI® Tablets Take UPTRAVI® exactly as your doctor tells you to take it. Usually, your doctor will have you take UPTRAVI® twice a day. Taking UPTRAVI® with food may help you tolerate UPTRAVI® better Swallow UPTRAVI® tablets whole. Do not split, crush, or chew tablets Tell your doctor if you have any form of liver disease. Your doctor may need to change your dose of UPTRAVI® UPTRAVI® is measured in micrograms (mcg). Tablets come in the following strengths: 200, 400, 600, 800, 1000, 1200, 1400, and 1600 mcg   UPTRAVI® given by intravenous (IV) injection Your healthcare provider will give you UPTRAVI® into your vein through an intravenous (IV) line Your healthcare provider will decide how much UPTRAVI® for injection you will receive each day based on your current dose of UPTRAVI® tablets What is UPTRAVI®? UPTRAVI® (selexipag) is a prescription medicine used to treat pulmonary arterial hypertension (PAH, WHO Group 1), which is high blood pressure in the arteries of your lungs. UPTRAVI® can help delay (slow down) the progression of your disease and lower your risk of being hospitalized for PAH. It is not known if UPTRAVI® is safe and effective in children. Please see full Prescribing Information and Patient Product Information. cp-113991v5 This information is intended for the use of patients and caregivers in the United States and Puerto Rico only. Laws, regulatory requirements and medical practices for pharmaceutical products vary from country to country. The Prescribing Information included here may not be appropriate for use outside the United States and Puerto Rico. cp-244903v1

Story

Learning a New Rhythm on My Journey With PAH

Managing a pulmonary arterial hypertension diagnosis can be challenging while raising a family. Watch the video above to hear how Emily works with her family and her healthcare team to support her goals and find treatment options to manage her PAH. You can view the transcript for Emily's video here. Please see full Prescribing Information and Patient Product Information. Please see Important Safety Information below.  Want to learn more about UPTRAVI® (selexipag)? sign Up for more information Emily is a volunteer with the SHARE Network, a Janssen Pharmaceuticals, Inc. program, made up of people who are dedicated to inspiring others through their personal health journeys and stories of caring. Emily is partnering with Janssen to share her story. She has been paid for her time. Individual results may vary. Please consult with your healthcare team for treatment and medical advice. IMPORTANT SAFETY INFORMATION Do not take UPTRAVI® if you take gemfibrozil because this medicine may affect how UPTRAVI® works and cause side effects Do not take UPTRAVI® if you are allergic to selexipag or any of the ingredients in UPTRAVI® Before you take UPTRAVI®, tell your healthcare provider about all your medical conditions, including if you: Have liver problems Have narrowing of the pulmonary veins (veins in your lungs). This is called pulmonary veno-occlusive disease (PVOD) Are pregnant or plan to become pregnant. It is not known if UPTRAVI® will harm your unborn baby Are breastfeeding or plan to breastfeed. It is not known if UPTRAVI® passes into your breast milk. You and your doctor should decide if you will take UPTRAVI® or breastfeed. You should not do both Are taking any other prescription or over-the-counter medicines, vitamins, or herbal supplements What are the possible side effects of UPTRAVI®? The most common side effects are: Headache Diarrhea Jaw pain Nausea Muscle pain Vomiting Pain, redness or swelling at the injection site with UPTRAVI® for injection Pain in arms or legs Temporary reddening of the skin (flushing) Joint pain Low red blood cell count Less appetite than usual Rash Talk to your doctor if you have a side effect that bothers you or does not go away. These are not all the possible side effects of UPTRAVI®. For more information, ask your doctor or pharmacist. You may report side effects to FDA at 1-800-FDA-1088 or www.fda.gov/medwatch. Keep UPTRAVI® and all other medicines away from children. What other medicines might interact with UPTRAVI®? UPTRAVI® and other medicines may affect each other, causing side effects. Tell your doctor about all the medicines you are taking. Do not start any new medicine until you check with your doctor. How should I take UPTRAVI®? UPTRAVI® Tablets Take UPTRAVI® exactly as your doctor tells you to take it. Usually, your doctor will have you take UPTRAVI® twice a day. Taking UPTRAVI® with food may help you tolerate UPTRAVI® better Swallow UPTRAVI® tablets whole. Do not split, crush, or chew tablets Tell your doctor if you have any form of liver disease. Your doctor may need to change your dose of UPTRAVI® UPTRAVI® is measured in micrograms (mcg). Tablets come in the following strengths: 200, 400, 600, 800, 1000, 1200, 1400, and 1600 mcg   UPTRAVI® given by intravenous (IV) injection Your healthcare provider will give you UPTRAVI® into your vein through an intravenous (IV) line Your healthcare provider will decide how much UPTRAVI® for injection you will receive each day based on your current dose of UPTRAVI® tablets What is UPTRAVI®? UPTRAVI® (selexipag) is a prescription medicine used to treat pulmonary arterial hypertension (PAH, WHO Group 1), which is high blood pressure in the arteries of your lungs. UPTRAVI® can help delay (slow down) the progression of your disease and lower your risk of being hospitalized for PAH. It is not known if UPTRAVI® is safe and effective in children. Please see full Prescribing Information and Patient Product Information. cp-113991v5 This information is intended for the use of patients and caregivers in the United States and Puerto Rico only. Laws, regulatory requirements and medical practices for pharmaceutical products vary from country to country. The Prescribing Information included here may not be appropriate for use outside the United States and Puerto Rico. cp-222933v2

Story

Test sponsored video here

When living with PAH, building a strong relationship with your physician is so important. Watch the featured video above to see how Jennifer works with her healthcare team to manage her PAH and find treatment options that are right for her. You can view the transcript for Jennifer's video here. Please see full Prescribing Information and Patient Product Information. Please see Important Safety Information below.  Want to learn more about UPTRAVI® (selexipag)? sign Up for more information Jennifer is a volunteer with the SHARE Network, a Janssen Pharmaceuticals, Inc. program, made up of people who are dedicated to inspiring others through their personal health journeys and stories of caring.  Jennifer is partnering with Janssen to share her story. She has been paid for her time. Individual results may vary. Please consult with your healthcare team for treatment and medical advice.  IMPORTANT SAFETY INFORMATION Do not take UPTRAVI® if you take gemfibrozil because this medicine may affect how UPTRAVI® works and cause side effects Do not take UPTRAVI® if you are allergic to selexipag or any of the ingredients in UPTRAVI® Before you take UPTRAVI®, tell your healthcare provider about all your medical conditions, including if you: Have liver problems Have narrowing of the pulmonary veins (veins in your lungs). This is called pulmonary veno-occlusive disease (PVOD) Are pregnant or plan to become pregnant. It is not known if UPTRAVI® will harm your unborn baby Are breastfeeding or plan to breastfeed. It is not known if UPTRAVI® passes into your breast milk. You and your doctor should decide if you will take UPTRAVI® or breastfeed. You should not do both Are taking any other prescription or over-the-counter medicines, vitamins, or herbal supplements What are the possible side effects of UPTRAVI®? The most common side effects are: Headache Diarrhea Jaw pain Nausea Muscle pain Vomiting Pain, redness or swelling at the injection site with UPTRAVI® for injection Pain in arms or legs Temporary reddening of the skin (flushing) Joint pain Low red blood cell count Less appetite than usual Rash Talk to your doctor if you have a side effect that bothers you or does not go away. These are not all the possible side effects of UPTRAVI®. For more information, ask your doctor or pharmacist. You may report side effects to FDA at 1-800-FDA-1088 or www.fda.gov/medwatch. Keep UPTRAVI® and all other medicines away from children. What other medicines might interact with UPTRAVI®? UPTRAVI® and other medicines may affect each other, causing side effects. Tell your doctor about all the medicines you are taking. Do not start any new medicine until you check with your doctor. How should I take UPTRAVI®? UPTRAVI® Tablets Take UPTRAVI® exactly as your doctor tells you to take it. Usually, your doctor will have you take UPTRAVI® twice a day. Taking UPTRAVI® with food may help you tolerate UPTRAVI® better Swallow UPTRAVI® tablets whole. Do not split, crush, or chew tablets Tell your doctor if you have any form of liver disease. Your doctor may need to change your dose of UPTRAVI® UPTRAVI® is measured in micrograms (mcg). Tablets come in the following strengths: 200, 400, 600, 800, 1000, 1200, 1400, and 1600 mcg UPTRAVI®given by intravenous (IV) injection Your healthcare provider will give you UPTRAVI® into your vein through an intravenous (IV) line Your healthcare provider will decide how much UPTRAVI® for injection you will receive each day based on your current dose of UPTRAVI® tablets What is UPTRAVI®? UPTRAVI® (selexipag) is a prescription medicine used to treat pulmonary arterial hypertension (PAH, WHO Group 1), which is high blood pressure in the arteries of your lungs. UPTRAVI® can help delay (slow down) the progression of your disease and lower your risk of being hospitalized for PAH. It is not known if UPTRAVI® is safe and effective in children. Please see full Prescribing Information and Patient Product Information. cp-113991v5 Dr. Raval is a paid speaker for Janssen. The information does not replace or substitute medical advice from your healthcare providers. Please consult with your healthcare team for treatment and medical advice. This information is intended for the use of patients and caregivers in the United States and Puerto Rico only. Laws, regulatory requirements and medical practices for pharmaceutical products vary from country to country. The Prescribing Information included here may not be appropriate for use outside the United States and Puerto Rico. cp-222934v2