Hope all of you DIPNECH readers are doing well.
Even with all my lemonade, sometimes things do get the better of me. Last fall I found myself going through an especially rough period. When I burst into tears in my pulmonologist's office I knew it was time to do something about it. So I started seeing a therapist. She prescribed an anti-depressant in the class known as selective serotonin reuptake inhibitors, or SSRIs, with a brief titration up to a modest dose.
Almost immediately I started feeling increased shortness of breath. At first I thought it might just be the weather getting colder. She thought it might be a bit of anxiety that sometimes occurs in the early weeks. But a few months later, while my mood and outlook have improved, I'm still frustratingly short of breath with the least amount of exertion.
Then I remembered that my carcinoid specialist had once measured the serotonin level in my blood. I couldn't remember why, but I do recall it was within normal range. So I called him to ask. Long story short: serotonin is definitely related to carcinoid syndrome, and with the thought that DIPNECH is a precursor to full-blown carcinoids he suggested that I might be just tipping the balance enough to be causing this problem. He recommended that I stop the SSRI. I'm going to taper back off and continue the therapy without it.
I'm just wondering, has anyone else tried SSRI therapy, and what have been the results?
4 comments:
Hi. I've been reading your blog since I was diagnosed but this is my first post. I'm sorry you have been having such a hard time these last few months.
I haven't taken SSRIs but I've been researching somatostatin/octreotide with a view to starting it myself in spring and I have found that this treatment will reduce your natural serotonin levels.
It is possible that even with the SSRI you still may not be much above normal.
I agree the timing would make you question things though. I hope you get this resolved.
RE: SSRIs. Please be very careful. In my opinion they are very dangerous and not worth any benefit due to the gross harm that can and does happen. Also, they are highly addictive, need constant adjusting because the body builds up a tolerance such as a street drug, they can have horrible side effects not limited to aggression, suicidality and homicide. I only know this because my family had a personal holocaust when one member was prescribed an SSRI. my blog is http://prescriptiondrugsarekillingus.blogspot.com to learn more.
Anyway, I have had DIPNECH and carcinoid tumorlets since 1984. I can pinpoint the exact moment. I had surgery and after the surgery was never the same. Even though modern medicine says they don't know the cause I suspect it is something in our environment such as an anesthetic perhaps. Also, our nutrient depleted foods and over processed foods don't contain the basic vitamins, hormones and minerals. We must build up our bodies through supplementation (but buy the good stuff), staying away from fast food and processed food, etc. Here's what I learned in the last couple of days. My Vitamin D level has remained low even though I had been taking 50,000 IUs per week for 12 weeks followed by 2,000 IUs a day for 12 weeks. Now I am on 25,000 IUs a week for 12 weeks and we will see how it goes. I am writing this still shaking my head. Vitamin D it turns out is a hormone. DIPNECH is a neuroendocrine disease. Endocrine = hormone. I am not saying vitamin D deficiency caused my DIPNECH but it does make me wonder if there has been any holistic/alternative/forward thinking MD's researching the cure on a nutrient/hormonal level. I don't want a manufactured drug to take for life. I want a cure that gets to the cause. I have committed myself to eating better, cutting out as much sugar from my diet, etc. I am also starting a supplement regime with Vitamin D3, Fish Oil, Flaxseed oil, B12, certain mushrooms (antioxidants)etc. I'll keep ya'll posted.
Hi Jill, I will have to get my Vitamin D levels checked also..Thanks for the tip..
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