Severe Limitations Due to Dysautonomia Following Cancer Treatments
Hello. I'm a 38-year-old woman who completed her second round of cancer treatment in March. Over the years, I've encountered various unexplained medical issues (which you can find summarized at the end). My treatment journey was briefly interrupted because my mother was receiving hospice care. However, after resuming immunotherapy last September, I now find myself nearly confined to my bed. Whenever I attempt to stand up, I experience significant nausea (which often leads to vomiting or dry heaving, along with a runny nose and hot flashes). This reaction occurs reliably if I remain upright for more than 1 to 3 minutes. On some days, I manage to cope a little better, but many other days are quite challenging. My overall quality of life has greatly decreased, largely due to these severe episodes which often leave me feeling unwell for the remainder of the day. Additionally, I've noticed a significant increase in my heart rate, particularly in the mornings and during hormonal changes. I have been prescribed odanestron and olanzapine; however, their effect is minimal and only allows me to maintain an upright position for a slightly longer period. Before my cancer diagnosis, I experienced widespread pain and petit mal seizures. In my childhood, I dealt with several conditions, including: - Suspected long QT syndrome (originally SVT, but it evolved over time) - A lazy eye - Scoliosis - Inward-turned hips The vomiting episodes have compelled me to keep vomit bags strategically placed throughout my home, in my purse, and even in our vehicles. Currently, I've reached a point where I can only manage the essential tasks, such as visiting the restroom, and I’m largely unable to leave the house or navigate effectively within it. If relevant, I should mention that I've developed a patchy rash on my lower legs (from the knees downward) since starting immunotherapy. Dysautonomia has come up in conversations regarding my condition; prior to this, there was a suspicion of paraneoplastic syndrome. I'm reaching out in hopes of receiving some advice or recommendations. My limitations have led to my approval for disabled placards, and I've even applied for disability assistance, as standing has become an extreme challenge for me.
Answers (1)
8/26/2025, 1:21:52 AM
OpenHealth AI
I'm sorry to hear about the difficulties you're facing after your treatments. Experiencing severe limitations due to dysautonomia can be incredibly challenging, particularly after enduring cancer therapy. It's important to acknowledge your feelings and the impact these symptoms have on your quality of life. Let’s discuss a few immediate steps to help manage your symptoms and improve your situation.
Summary of Key Points
- Dysautonomia Symptoms: You’re experiencing nausea, vomiting, increased heart rate, and possibly a rash, likely related to dysautonomia after cancer treatments.
- Medication Management: Current medications provide minimal relief, and additional strategies may help.
- Self-Care and Lifestyle Adjustments: Implementing specific methods can help manage symptoms and improve daily function.
Explanation
Dysautonomia is a condition that affects the autonomic nervous system, which controls involuntary bodily functions like heart rate, blood pressure, and digestion. Your symptoms, including nausea when upright, an increased heart rate, and the rash, could all be related to this condition, especially following major changes in your health such as cancer treatments and immunotherapy. It's crucial to focus on strategies that may help alleviate these symptoms.
Actionable Next Steps
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Fluid and Salt Intake: Increase your fluid intake, especially with electrolyte solutions, and consider slightly increasing salt in your diet, as this can improve blood volume and circulation, which may help manage your symptoms. Always check with a healthcare provider before altering your diet significantly.
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Gradual Changes in Position: When attempting to stand or change positions, do so slowly. Consider sitting up in bed first for a few minutes before fully standing. This might reduce the severity of nausea.
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Compression Garments: Wearing compression stockings can help improve circulation and may alleviate some symptoms of dysautonomia.
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Temperature Management: Pay attention to temperature changes; overheating can exacerbate symptoms. Staying cool with fans or cool packs might help when experiencing hot flashes.
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Small, Frequent Meals: Eating smaller, more frequent meals may help in reducing nausea, instead of larger meals. Avoid heavy or greasy foods that can worsen nausea.
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Positioning in Bed: Consider using pillows to elevate your upper body when resting. This may help with blood flow when standing.
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Routine and Monitoring: Establish a routine and keep a symptom diary to track what seems to trigger or alleviate your symptoms. This can be beneficial for any follow-up appointments.
If your symptoms worsen or you notice any new concerning symptoms (like severe rashes, increasing heart rate, or any other significant changes), it’s important to discuss these with your healthcare team, as they can offer tailored medical management. Remember, you're not alone in this journey, and there's hope for better health and improved quality of life. Please take care of yourself.
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