Which advice would you give to someone who has just been diagnosed with Cyclic vomiting syndrome?

See some advice from people with experience in Cyclic vomiting syndrome to people who have just been diagnosed with Cyclic vomiting syndrome

Congratulations on taking the first step towards understanding your health condition! Being diagnosed with Cyclic Vomiting Syndrome (CVS) can be overwhelming, but with the right knowledge and support, you can manage and improve your quality of life. Here are some important pieces of advice to help you navigate this condition:

1. Educate Yourself

Understanding CVS is crucial in managing your symptoms effectively. Take the time to learn about the condition, its triggers, and potential treatment options. Knowledge empowers you to make informed decisions and communicate effectively with your healthcare team.

2. Find a Knowledgeable Healthcare Team

Collaborating with healthcare professionals who specialize in CVS is essential. Seek out doctors who have experience in treating this condition, such as gastroenterologists or neurologists. They can provide you with the most up-to-date information, guidance, and treatment options tailored to your specific needs.

3. Keep a Symptom Diary

Tracking your symptoms, triggers, and patterns can help identify potential triggers and develop effective coping strategies. Maintain a detailed diary that includes information about your diet, stress levels, sleep patterns, and any other factors that may influence your CVS episodes. This information will be valuable during doctor visits and can aid in finding personalized treatment plans.

4. Identify and Avoid Triggers

CVS triggers can vary from person to person. Common triggers include certain foods, stress, hormonal changes, lack of sleep, and infections. By identifying your triggers, you can take proactive steps to avoid or minimize exposure to them. This may involve making dietary changes, practicing stress management techniques, and prioritizing self-care.

5. Develop a Support System

Living with CVS can be challenging, both physically and emotionally. Building a strong support system is crucial. Share your diagnosis with your loved ones, friends, and colleagues, so they can understand and support you during difficult times. Consider joining support groups or online communities where you can connect with others who have CVS. Sharing experiences and advice can provide comfort and valuable insights.

6. Communicate Openly with Your Loved Ones

It's important to communicate openly with your loved ones about your condition. Explain what CVS is, how it affects you, and what they can do to support you. Educating them about your triggers, warning signs, and necessary accommodations can help them understand your needs better and provide the necessary assistance when you experience an episode.

7. Explore Treatment Options

There is no one-size-fits-all treatment for CVS, as each person's experience is unique. Work closely with your healthcare team to explore various treatment options. These may include medications to manage symptoms, lifestyle modifications, stress reduction techniques, and alternative therapies like acupuncture or cognitive-behavioral therapy. Finding the right combination of treatments may take time, so be patient and persistent.

8. Prioritize Self-Care

Self-care plays a vital role in managing CVS. Ensure you prioritize your physical and mental well-being. Get enough sleep, eat a balanced diet, engage in regular exercise (if possible), and practice stress management techniques such as meditation, deep breathing, or yoga. Taking care of yourself can help reduce the frequency and severity of CVS episodes.

9. Be Prepared for Episodes

Despite your best efforts, CVS episodes may still occur. Prepare an emergency kit with essential items such as a change of clothes, water, oral rehydration solutions, medications prescribed by your doctor, and any comfort items that help you during episodes. Having these items readily available can make episodes more manageable and less stressful.

10. Stay Positive and Seek Emotional Support

Living with CVS can be emotionally challenging, but maintaining a positive mindset can make a significant difference. Seek emotional support from friends, family, or mental health professionals who can help you cope with the emotional impact of CVS. Remember, you are not alone, and there are resources available to support you on this journey.

Remember, everyone's experience with CVS is unique, and what works for one person may not work for another. It's essential to work closely with your healthcare team to find the best strategies and treatments for managing your symptoms. Stay informed, be proactive, and don't hesitate to reach out for support when needed. With time, patience, and the right support, you can lead a fulfilling life despite living with CVS.

Diseasemaps

Posted Mar 30, 2017 by CVS Network - Angie 2875

Most Doctors don't even know what Cyclic Vomiting is! The ones that do will still try to put you in a box. Judge your problems by others. So...do not let that discourage you too bad. It will, but you keep fighting for diagnosis and proper treatment! GO TO THE HOSPITAL WHEN YOU HAVE BEEN SICK FOR A PROLONGED PERIOD OF TIME !!! No matter what they say or how they treat you. Get fluids! Learn your body. Record reactions to food..work...play...stress...happiness...hot...cold..learn YOU. Don't take any crap from anyone. My doctor is one of the best but I will argue with him in a split second if I need him to hear me!! Don't be rude..lol. Go into a dark quiet private bedroom..lay down..tell everyone prior to going in not to wake you if you fall asleep. Stay there for a few days sleeping as much as possible (Dr can help with proper meds). RESET! Become a member of any Facebook group you can find that is CVSers .

Posted Jan 20, 2018 by Allison 700

1.Reach out and join the wonderful support groups on Facebook. There are so many people out there just like you living with this illness.
2. You will come to a point where you will grieve the person you were before diagnosis... this is completely healthy, as long as you talk about it to someone.
3. There is no cure for cyclic vomiting syndrome, however there are medications that can help control and ease the symptoms .
4. Listen to your body and don't be afraid to call an ambulance , don't leave it too late.

Posted Jan 21, 2018 by Laura 3890

Get help earlier. I would wait days to go to the hospital. It gets harder to get an IV in a vein that's not at all hydrated.

Explain your disease to friend, family and your medical professionals.

Research and join support groups. It helps to have knowledgeable people to help you.

Always have an advocate. It's hard to think and absorb while you are in an episode.

Posted Jan 21, 2018 by Janice 900

First, be relieved that you know what you have! I struggled for months not knowing and thinking I was going crazy! Although it really stinks to be diagnosed with CVS, remember that it is a manageable condition and is ordinarily not life-threatening.This IS a condition you can live with, just be prepared in advance for your episodes by scheduling things appropriately (if you can) and making your "space" as conducive to getting better as possible. Educate your friends and family about CVS and let them know what kind of support you will need during episodes and after. Emotional support meant more to me than almost anything else when I was in an episode. Find that support wherever you can, whether it's friends or family staying with you or just being available by phone or join online support groups. It's amazing how much better I felt after I joined CVS groups on Facebook. It was very comforting and calming to see that I was not the only one. Last bit of advice - LET PEOPLE HELP YOU! If help is offered, in any form, please take it. Let those that care about you help! You're going to need all the help, support, and love you can get.

Posted Feb 19, 2018 by Rachel 4410

Find a good compassionate doctor who understands or is willing to learn about the condition and explore treatment options. Be sure to have a neurologist, primary care doctor, GI specialist, and a therapist.

Posted May 29, 2019 by Nicci 3070

Don't let yourself get overwhelmed.
Keep your friends and family close.
Everything will be okay. Just keep swimming
Work closely with your doctor.
It can take a little while to find out your personal successful treatment.

Posted May 30, 2019 by Chloe 3120

Don´t stop looking for working medications and learn and watch for your triggers. Enough sleep. Avoid stress, also positive excitement can be a trigger

Posted May 30, 2019 by Cassandra Katharina Minerva 4050

Try to not live in anticipation of the next episide

Posted Feb 28, 2020 by KAVD 900

I would share with them a list of foods that might be avoided, a list of meds and home remedies that my be tried. I would tell them to try to find both a good doctor and a good hospital that arenwellbeducated and familiar with CVS. I would also encourage them to share their diagnoses with close friends and family members around them. And tell them that I’m here for them if they need me ( and I’m not in the middle of an episode myself ! Lol)

Posted Jul 11, 2021 by Holly 900

Translated from spanish Improve translation

Q it is important to know q happens to you , know your name in order to go to the professionals q understand and address quickly.

Posted Nov 3, 2017 by Betty 1700

Translated from spanish Improve translation

I advise you to avoid anger,stress ,have a lot of faith and be with people who understand and will listen..

Posted Nov 4, 2017 by Fanny 2000

Translated from spanish Improve translation

First of all: congratulations! You've been diagnosed!, that in and of itself is quite an odyssey...
feel happy to be able to call your disease by your name and most importantly: learn to live with it. Because they will go at some point, but we do not know when will come that time.

Posted Nov 4, 2017 by Paola 1750