To those with porphyria and mental health concerns: You’re not alone

Note: This column describes the author’s own experiences with several antidepressants and other mental health medications. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

I touched on it in my previous column, but I’d just like to say that mental health problems suck. Period. Not “end of discussion,” because there’s so much I have to say; however, I choose to end that statement bluntly.

To all of those who, like me, struggle with porphyria and mental health concerns, I want you to know that you are not alone. You are enough, and you matter. I mean that from the bottom of my heart.

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My journey

While growing up, I had heard of anxiety and depression, but I didn’t realize that I had both conditions until I was 20 years old, when I started experiencing panic attacks. It felt like my chest was caving in. My right fingertips would start to tingle, and soon my hand would begin to vibrate. The sensation would move into my right arm, and then my whole body. I shook and shook. These episodes came out of nowhere and would last up to 15 minutes.

After a couple weeks of this, I scheduled a doctor’s appointment. I hadn’t yet been diagnosed with porphyria, and after weighing my options with my provider, I started taking the antidepressant Celexa (citalopram).

Within two weeks, I went from having a couple panic attacks a day and being mildly depressed to having 14 panic attacks in one day and being pretty happy. My doctor stopped the Celexa and started me on Wellbutrin (bupropion), another antidepressant. That’s when my depression became more extreme than ever before, to the point where I was experiencing suicidal thoughts and actions.

Fortunately, I was scheduled to see my doctor two weeks after starting each medication, so I didn’t have to suffer the side effects for too long. Looking back, I wish I would’ve moved up my appointment as soon as I started feeling more depressed; however, I didn’t care enough at the time. But for anyone else who may be feeling that way, I encourage you to seek help. You deserve happiness.

After having such drastic side effects from both Celexa and Wellbutrin, I decided to stop trying antidepressant medications. Instead, I surrounded myself with supportive family and friends as well as a therapist who was dedicated to her patients’ well-being.

Six years later, in 2020, the anxiety and depression returned with a vengeance, and I decided to try Prozac (fluoxetine). This was shortly before I was diagnosed with acute intermittent porphyria. Prozac served its purpose for a while, but by mid-2023, it had become less effective. I’d had a hysterectomy in 2021, and I feel like menopause has destroyed my mental health.

At the beginning of this year, my doctor switched me from Prozac to Luvox (fluvoxamine) and Abilify (aripiprazole), but we are still adjusting the dosages to achieve the maximum benefit from both medications.

Today, I’m exhausted and I sleep all the time. One minute I’m happy and laughing, and the next, I’m angry or sad. In my previous column, I asked: Which came first, the chicken or the egg? Are my mental health concerns a symptom of porphyria, or do they stem from underlying anxiety and depression? What role has menopause played?

In my book, “I’m Not Always Me: Living With Porphyria,” I shared that my personality isn’t always the same, even from moment to moment. Regardless of this internal fight, I know deep down that I am not alone, I matter, and I am enough. In the words of my wonderful husband, Daniel, “So love yourself, no matter how bad you feel.”

Note: Porphyria News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Porphyria News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to porphyria.