OpenHealth Q&A

Navigating Severe Dysautonomia: A Personal Account

At 42 years old and weighing 210 pounds, I suspect I may be experiencing an acute form of dysautonomia, leading to extreme reactions to food, which fills me with dread. For some time, I have been taking Wellbutrin, starting off at a high dosage before tapering down to a minimal amount, only to eventually return to a moderate dose. My history with Adderall has been tumultuous for years, and I have relied on over-the-counter nasal sprays for nine years. I began smoking at 13, switched to vaping five years ago, and previously had a stint with cocaine in my youth. Currently, I take kratom at a low dose and ensure to take breaks to avoid dependency. My sleep aids vary as well but are not used daily. Instead, I manage them on an as-needed basis, including magnesium, tryptophan, clonidine, or zolpidem. For the past two years, I have visited doctors regarding various unexplained symptoms but have often been brushed off. I noticed my veins bulging at strange intervals; a doctor suggested this happens as skin ages and becomes thinner. My nails exhibited deep grooves and imperfections, attributed to nail-biting habits. I also experienced swelling in my right hand and pain at the back of my head, which I was told could be rheumatoid arthritis. Then, on March 16th, I accidentally consumed four 20mg Adderall tablets instead of four 200mg ibuprofen capsules in the night. The following day, I endured an explosion of alarming symptoms: sharp nerve pain, a bulging right eye, chest discomfort, piercing pain in my right temple, and splinter hemorrhages on my hands and feet alongside poor capillary refill—my arm bore a pattern for two hours, and I experienced significant swelling and a spidering purple pattern on my hands and feet. Subsequently, I ceased all Adderall use immediately. However, I remained unaware that other substances exacerbated my condition. I continued to take various medications in an attempt to alleviate symptoms, which led to intense vasoconstriction and dilation fluctuations as the effects waned. I abruptly halted my Wellbutrin intake; even ibuprofen triggered flare-ups. I sought help at the emergency room on a Friday evening but was informed that I was not in a critical state, despite feeling as if I wasn’t healing. After my last vape hit, my heart rate spiked erratically between 83 and 150 bpm, and my skin showed poor capillary refill and prominently bulging veins. This realization led me to suspect that nicotine was impeding my recovery, prompting me that night to quit a cocktail of substances, including nicotine, nasal spray, and caffeine. By the third day without vaping or the nasal spray, I experienced widespread nerve pain throughout my body, which I suspect is linked to histamine reactions, characterized by severe itchiness and worsening symptoms with movement. Now, I am noticing sporadic flare-ups in my blood vessels that itch intensely when they bulge. I suspect food may be a trigger, as I had a reaction after consuming pumpkin seeds, which contain a high amount of magnesium—a substance I had been using before realizing my heightened sensitivity. Through extensive research, I am beginning to understand that this may be a hypersensitivity dysautonomia condition. Feel free to correct me if I’m mistaken. It has been two weeks now, and I struggle even with basic activities like showering without triggering distressing flare-ups. Pain relief with ibuprofen is off the table, as well as my Wellbutrin. Interestingly, I noticed that by the fifth day without Wellbutrin, I was not experiencing severe withdrawal symptoms, unlike a prior four-day stint without it that left me feeling utterly miserable. The emergency room informed me that my body’s heightened adrenaline response was likely masking withdrawal signs, which aligns with my findings. I once believed that as long as I avoided aggravating my condition, I could begin to heal; however, everything I consume seems to provoke a reaction. Is this a permanent state for me? Can my body find its equilibrium again despite this heightened sensitivity? If this continues to be my new normal, it feels unbearable. I am desperate for guidance and support.

Answers (1)

4/1/2025, 5:51:04 PM

OpenHealth AI

I'm truly sorry to hear about the challenges you're facing with your health. Navigating severe symptoms can be overwhelming, especially when you're experiencing extreme reactions to food and various substances. It's important to acknowledge your feelings and know that seeking support is a positive step. Let's address your concerns about dysautonomia and hypersensitivity.

Key Points

• It seems you are experiencing symptoms related to dysautonomia, potentially exacerbated by previous medications and lifestyle factors.
• Your heightened sensitivity and reactions to food and substances suggest that your nervous system is reacting strongly.
• Finding balance and understanding your triggers is crucial for recovery.

Explanation

Dysautonomia involves dysfunction of the autonomic nervous system, which regulates involuntary body functions, including heart rate, blood pressure, and digestion. Your symptoms, including fluctuations in heart rate and severe reactions after consuming certain foods, could indicate a heightened response from this system. It's also important to consider that prolonged use of substances like caffeine, nicotine, and certain medications, including Wellbutrin and Adderall, can lead to changes in how your body reacts to stimuli.

Given the complexity and severity of your condition, understanding food sensitivities and potential triggers is crucial. It sounds like you've already begun to identify certain foods and substances that may worsen your symptoms, which is a significant insight.

Next Steps

1. Food Reintroduction Diet: Consider implementing an elimination diet where you avoid all potentially triggering foods (like high-magnesia items) for a few weeks. Gradually reintroduce them one at a time while monitoring symptoms closely. This can help identify specific triggers.

2. Hydration & Basic Self-Care: Ensure you’re staying well-hydrated and resting. Introducing gentle, low-stress activities may help improve your overall wellbeing. Simple stretches or meditation could be beneficial.

3. Monitor Symptoms: Keep a journal documenting your daily symptoms, foods consumed, and any medications taken. This can aid in identifying patterns and triggers, providing more information to discuss with healthcare providers.

4. Seek Specialist Support: Although many healthcare providers may have brushed off your symptoms, it may be worthwhile to seek out a specialist, such as a neurologist or a functional medicine doctor, who is experienced in dysautonomia. They may offer more tailored approaches to your situation.

5. Explore Support Groups: Engaging with communities or support groups for individuals facing similar health challenges can provide emotional support and practical advice from others who understand what you’re going through.

6. Consider Stress Management Techniques: Practices like mindfulness, yoga, or guided relaxation may assist in managing stress levels, which can also help alleviate some dysautonomic symptoms.

While it might feel daunting, remember that your body is resilient and capable of finding some equilibrium over time. Your efforts toward identifying triggers and managing your reactions are pivotal steps on this journey. Please feel free to ask any further questions or share updates as you navigate this process.