I started my new medical adventure today with my first visit to my new doctor. He discovered me in my poor condition while treating me at our local hospital. I have been suffering recently from flare ups of my rare, chronic disease cyclic vomiting syndrome (CVS). This doctor has given care to our area for a long time and is a reputable doctor, so I was surprised when he told me that he’s also a migraine specialist and believes that is what I am suffering from.
Not too long ago, I had actually read a study connecting cyclic vomiting syndrome and migraines. In that study it stated that the first connection between the illnesses was in 1898. So when my new doctor told me that he wanted to treat my CVS as a migraine to see if it helped, it made a lot of sense to me. There are many similarities between the two and sometimes the illness is referred to as abdominal migraines.
For instance, those suffering head migraines will often have signs beforehand that tell them they are going to have an episode. CVS patients also have this phenomenon. Senses heighten and we become sensitive to things like fluorescent lights, change in vision, and feel off in a way we often can describe. I will lose my appetite and will have a hard time even wanting to eat. My sleep is always disturbed, waking often in the early morning hours of 3:00 or 4:00am, despite knowing I need rest.
When an episode does flare up, treatment is often the same. The length of time that it takes for a patient to get through it varies from person to person. No one is really sure what exactly triggers it to come on, although there are hypothesis’ out there of stress being a link. When in an episode, we wish to have it dark and quiet, if possible.
My doctor today explained that when having a migraine, our blood vessels are actually constricting, causing us to have pain or nausea. He said that there’s an imbalance in hormones, too, that are causing my episodes to flare when I have my period. I have actually been using birth control to skip my period, after my episodes were consistently coming every month apart when my period would start. This worked for nearly two years before my episodes started to flare again in late July. My last two episodes were only 3 weeks apart. Since then, I have lost almost 15 pounds. This led to another conversation about the importance of not becoming pregnant, because of the risk it could pose to the child. We are going to try me on Mirena, an IUD that will be implanted, to stop my period from triggering an episode.
Another thing that we talked about was exercise. He said part of the treatment would be that I would need to exercise more regularly, because it helps with the blood vessels that we talked about earlier. He said an hour a day, even just going for a walk, would be good for me.
For those reading this who may be suffering from CVS, the only thing I have been taking that seemed to work immediately was mirtazapine. I was only taking 7.5mg, one time a day. Now, in addition to the mirtazapine, I am taking 50mg of nortriptylin, which is used to treat migraines.
You might consider having a conversation with your doctor about the possible connection. The reason that I say this is because when I have an episode, they are on average 9-11 days long. While in the hospital with my last episode, on day 4 my new doctor gave me nortriptylin and the next morning I was alert, awake, and discharged to go home. So by day 5 I was well enough to be released.
Since that time, I have only gotten better. For the last 8 days, I have marked having a good day on my health chart. I will continue to write about this illness, in case it helps even just one person who might be suffering.
For more of my blogs about CVS see:
• 8 Things I Do When in a CVS Episode
• 10 Things To Prepare For The Next CVS Episode
• I Have An Invisible Illness Called Cyclic Vomiting Syndrome
• The Next Trip Down The Rabbit Hole
Do you suffer from CVS? Share your story with me below and be featured on my blog!