Warning: It's a long post! In short, I figured out the cause of my chronic hives--read and give your input on being your own medical advocate!
This year has been a roller coaster of medical issues. Ironically most of them started after this fateful trip to my OB-Gyn to ask about a pre-conception consultation. We had been trying for about 4 months to get pregnant and no go. For some reason, I always thought that I would have trouble getting pregnant, but this was one time I didn't want to be proven correct. There are so many feelings tied to your fertility. I mean, in essence, evolutionarily it is what your body is created to do. To have this ability taken out of your hands is heart breaking. By the end of the consultation, the nurse practitioner (note: for the most part, I really like this woman. She listens, she's kind and she's given me amazing referrals) told me that she thought that I had PCOS (Poly-Cystic Ovarian Syndrome), needed to lose weight (thanks, I hadn't noticed), and needed to figure out any issues I had with depression and potential ADD. Oh where to start! I went to the doctor because I wanted to get pregnant and left with a script for birth control (it helps w/ the PCOS and mood swings), I cried.
Let's knock off the depression story first. I was diagnosed with depression when I was pretty young. I was in middle school, and depression, puberty and a tumultuous home life didn't go well together. At that age, I was given the magic pill of Prozac. I don't remember much about that time, but my mother claims it saved my life. I don't doubt it, but that Prozac started a decade long journey of self doubt, shame, and endless pills. I suck at remembering to take medicine. I put it off until the last minute (like everything else) and then I 'forget' to take the pills. Ironically, when I had to take a pill that had an immediately effect (if I took the pill, I didn't get hives and could breathe. If I forgot, I had a horrible itchy day ahead of me), I only forgot to take it once in 4 months. I felt self doubt because I couldn't make my mind do what I wanted and shame because depression in the 90's was still pretty taboo. People didn't openly discuss having depression and I always felt like I was 'different' and there was something wrong with me.
In attempts to figure out why I was having weird mood swings, I hit up my local insurance covered psychiatrist. I had found this lady for my husband because I quickly realized the man needed some help with his ADD that had stymied him from reaching his goals for years. I saw it in him, because I saw it in me. I have a brother and mother with ADHD. I know the face of it. What I didn't realize, was that the hormones and brain chemistry that cause one, are really closely tied to depression. Have ADD and depression? It isn't uncommon, but is frequently misdiagnosed.
I left this appointment in tears as well. This lady thought that my mood swings were bipolar disorder. WHAT?! I'm not bipolar! I get hyper, but I'm never reckless, and the more that I talked to people, the more that I thought she was full of it. After two of the worst weeks of my life attempting to take Abilify, I knew it was time to find a new doctor. The 'mood stabilizier' she put me on made me homicidal and suicidal. I hated myself, I hated my husband, I hated my mother, I hated my situation, I hated EVERYTHING and couldn't get away from it. I wasn't sad, I was MAD. I stopped take the medicine and miraculously felt better. New doctor time! This time I went with my ob-gyn's recommendation and the sky opened up, and the angels sang. I walked into this man's office and he had a picture on his wall that looked like it was painted in my favorite place, Maine. He confirmed it was. He was wearing a Van Gogh (my favorite artist) tie, and he....he listened to me. He gave me amazing advice, told me that nothing indicated that I was bipolar but instead it indicated that I need to stop take anti depressants all together to see how I was drug free, and that I probably had ADD. Angels singing people--angel are freaking singing here. I am not taking anti-depressants, and haven't since then and for the most part am great. I have some swings but by being off medication, I have learned what causes them and what I can do to prevent them (ironically eating is a huge issue). It hasn't been easy, and I still get over anxious about stupid stuff, but I'm okay. I'm better than okay, and I have a psychiatrist that I trust, and enjoy seeing. We have some great conversations actually. My next step is to seek out regular cognitive therapy to teach me coping skills for my anxiety. I'm a work in progress.
Okay, the real reason I was writing this post was because of my adventure with the PCOS diagnoses. First, I had to get blood tests, and an ultrasound to confirm the diagnoses. Then, I was told to find an endocrinologist to prescribe me metformin. Metformin, whens working correctly, works by allowing your body to better process sugar. It is a diabetes medicine that is used for people who have PCOS. It can help suffers lose weight, reduce the instance of cysts, reduce swelling and help them get pregnant. In me...not so much.
I first went to my primary care physician to get the script, since I had to wait more than a month to get in with the specialist. I started taking the lowest dose in July, and then when I saw the endocrine a month later, she told me to start increasing my dose. Then we had an earthquake, and a hurricane and my in-laws came to visit, and I had a sinus infection...all...in...the...same...week. I hit up the redi-med for the sinus infection, and was given some antibiotics and a steroid pack. As soon as I finished the steroid...I broke out in hives. EVERYWHERE.
Some of the highlights of the first few weeks of the hive adventure included:
- Not being able to walk because my hands and feet swelled up, and my feet hurt so badly that I couldn't put weight on them. I dehydrated myself on purpose because I couldn't walk to the bathroom. This lasted a couple of days.
- A visit to my primary care doctor that didn't seem concerned at all. At this point I could barely walk and my 'polite' was turned off. I almost beat him when he told me not to swear. He prescribed me heavy duty steroids...that didn't work at all. He also wasn't concerned that my resting heart rate was over 100, and my chest constantly hurt. For the record--the heart rate issues were another dangerous side effect. note: *He is no longer my doctor.*
- All of this happening while my in-laws are visiting from across the country, and my parents came to meet them (not stressful at all)...
- Being told that my hives were caused by stress (umm..the hives were CAUSING the stress!)
- Taking more benedryl than I thought humanly possible. I drank an entire bottle of children's benedryl in a day.
- Serious breathing difficulties. I thought that I just had a sinus infection until the horrible wheezing was pointed out to me. This lead to....
- A visit to the ER because of the breathing difficulties
- A visit to the dermatologist 3 days later because the hives came back after the steroid the ER gave me wore off. He told me that steroids would make it worse, and gave me antihistamines that I could build up to a high dose of, and then back off a few weeks later. They worked, but made me horribly stoned.
- My classes start and I was too stoned to remember most of the first few weeks
- Finally get an appointment with an allergist. He isn't much better at figuring this out, but puts me on a antihistamine that I can take daily, which...treats the symptom but not the cause. He also put me on antibiotics for a month to see if we could fix the swelling in my sinuses. Stopping drinking milk reduced my headaches more than any medicine did.
So...this goes on for months. I have food tests, I stop eating dairy and realize that most of my sinus headaches go away. No more wheat and milk together! All of this time I am choking down that one big ass metformin pill and occasionally attempting to up my dose. I cancel my endocrine appointment a couple of months ago because I haven't ever been able to get up to two pills, and I'm sick of spending money at the doctors. I decide to take the medicine increase seriously. Then, around my birthday my hands and feet start really hurting/swelling, and through the antihistamine, I get hives. We are on vacation in Williamsburg and I...am...flipping...out. I feel like crap, and although we had some great moments on that trip, I want to go back for a re-do.
A few days go by and the swelling seems to go down again. Then I decide to increase my dose of metformin again and the swelling/achiness comes back so I decide to look online to see if that's a side effect of the metformin. It is. Right under...hives, breathing issues, mood swings, increased heart rate/heart palpitations (which I'd been having). My heart rate jumped as I realized that I might have figured it out, and I start typing into the mighty Google God "Metformin allergies" and quickly (first page I look at) come across the account of a woman who had a sulfa allergy(wait...I have that) and broke out into hives on metformin. She doesn't know what to do. My husband sends me a link with the chemical name for Metformin, which includes the word 'sulfa.' They are both sulfur containing drugs, but not in the same class. However, it seems that EITHER (the study I read didn't know conclusively) that people with sulfa allergies are either allergic to ones that have similar chemical composition (like Metformin) OR are just at a higher risk for developing allergies to other drugs. Personally, I broke out in hives with sulfa drugs when I was 6 and haven't touched it since. I've broken out in virus hives, after being sick a couple of times since then but have never, conclusively been found allergic to anything other than sulfa. On top of that--- More research unveils people saying that they have sulfa allergies and metformin doesn't even work for them. Wait...what? I haven't lost any weight on metformin, and it caused me to swell. I thought it was because of the antihistamines that I'd had to take for the last four months. Because of the swelling, I'd stopped taking the metformin, cold turkey, the night before. I haven't touched it again. The more I read, the more people I talk to, the more I look down at my hive...free...skin, I realize that I was being poisoned for months by something I was religiously swallowing every night.
The stomachaches that increasing my dose of metformin caused had kept me from ever taking the whole dose that I was prescribed. My dislike of swallowing pills, and being able to look something up in Google saved my life. Not a single of the 3 doctors, including an allergist made the connection. The ER barely asked me about drug allergies, and what medicines I was taking and simply gave me some MORE steroids and sent me on my way. This has to be stopped! If there is some discernible connection between metformin allergies and sulfa allergies, people should know. I found a few places that mentioned that there might be some cross reactivity, but only after I realized that I was allergic to the medicine.
My joints, weeks later, still ache constantly. My feet and hands still feel puffy and swollen but nothing like they were. I stopped the nightly antihistamines that were making me so tired that every day was a trial, 5 days ago and I haven't had a damn hive since. I was taking claritin in the mornings but didn't today and I'm fine. I'm more than fine. I am free. After all this, and almost a year. I am no longer on antidepressants, antihistamines, or metformin. I'm almost completely drug free. It makes me wonder if I should have gone to the doctor to start with, and what my next step is. As far as having a baby, we have options and this time has made me realize that every day that we don't have kids, is a day where I can learn to be a better parent.
Going forward, I will never take a medicine without through research. I never going to simply take medicine to mask symptoms without first exhaustively attempting to find the cause. The doctors sort of just shrugged and told me that my hives were auto-immune. I knew they weren't and that I was getting worse, not better. I wasn't going to settle for just waiting for them to 'burn out,' and I needed to figure out what was going on. We need to research! While there are many more drugs on the market than ever before, we also have more access to researching them than ever before. Don't just blindly accept what you are told, go and find out everything that you can about it. A well informed patient is one that is less likely to be killed by someone else's mistake.
Have you had something similar happen to you? How are you your own advocate?