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My first real diagnosis since 1999, "CVS"...help..what do I do now?

Posted In: Medical Stories 0 Replies
  • Posted By: Thillmize
  • April 3, 2008
  • 09:18 AM

I will try to keep this as brief as I can. I have been suffering from chronic abdominal pain, nausea, and vomiting for the last 7 years and finally I went to see a neurologist and he told me I am suffering from "ABDOMINAL MIGRAINES" or "Cyclical vomiting syndrome". For the last few years, I have seen many specialists i.e.: GI (at least 4), Endocrinologist, Pain Psychologist, Pain Specialist...just to name a few. I have had 4 endoscopies, 1 colonoscopy, an capsule endoscopy, multiple X-rays, CT scans, MRI (on pituitary gland), 2 Hidda scans, and I have even had my gallbladder removed. My weight has fluctuated wildly from not being able to eat. I miss weeks of work, I can't spend time with my family and my husband truly stressed trying to hold the household together without me. I have lately (in the last month) been to the ER 4 times, and missed about a month of work and almost lost my job. I have been pregnant once which of course during that time made the pain and vomiting worse. It felt like I barely survived my last 3 months of college and I am terrified to ever get pregnant again, I am not sure I could handle it.

I currently take 6 medications a day just to function normally, its a band-aid but its not fixing the problem. I take showers to relieve the pain, and have scalded my back so bad because I was in so much pain, I didn't know I was burning myself. Before the seeing the neurologist, I often wondered if I will ever find out what is really wrong with me. Recently, I went to see 2 GI doctors simultaneously, thinking maybe having a second opinion I would get better results. Unfortunately, one doctor gave me Elavil (which did absolutely nothing) to take and told me to come back in a year. The other doctor basically threw up his hands and said he couldn't help me.

I heard the Cleveland Clinic was one of the best places to go when you're diagnosis is a complete mystery. So, I packed up the car and drove from Cincinnati to Cleveland twice. They ran multiple tests that I had never heard of before. I began to see the light at the end of tunnel, thinking maybe FINALLY, someone can help me! However, while having a horrible episode of vomiting, nausea, and pain, the doctor informed me and my tests were normal! How could that be when I’m so sick!

My husband researched CVS (Cyclic Vomiting syndrome) while I was admitted in the hospital, and found all the forums and other doctors that have made headway. I was so surprised to read the symptoms and they fit mine to a "T". However, even though I'm on these medications, they seem to not work anymore, or I'm getting worse. My husband went down to channel 5 news and he wanted them to do a story on me, it may help us get some help. I wouldn't mind being filmed at all. I want to get this out there. I told my boss what I may have, and he gave me this look like "that’s a bunch of bull****". I call the emergency line to my doctor, and he tells me to go to the ER. Once they give me a small dose of pain and nausea medicine, I feel like they are turning me away because they think I am a "med seeker". I try to tell them the abdominal migraine symptoms and since they never heard of it they just look at me dumbfounded. I remember the doctor saying to me, as I lay there trying not to move so I don't throw up, "Ma'am, you need to be discharged, you're just sleeping." I wanted to turn over and throw up all over the guy! He gave me just enough medicine to stop the symptoms for a couple hours. In the next 24 hours, I was in the ER AGAIN!! That same day, before returning to the ER, I had no pain medicine, so while my husband drove across town to get the "written" prescription (because you can't just fax it), then fill it at the hospital pharmacy, I just jogged around the block for hours until he came home. In the process of trying to relieve my pain, my clothes actually rubbed me raw, to the point I had scratches and welts all over. Of course, when I finally got Di lotted suppositories, it was too late. The only way to stop it was to go to the hospital, get fluids and IV medicine.

I have been told the stress factor too. "Oh you're suffering from stress, so let's put you on Zoloft." I took that **** and not only did it make me sick, but I couldn't sleep for a week! I have come across a few doctors that were willing to work with me, give me fluids, right dosages of medicine, and got me passed the point of vomiting. But they are far and few between. That is another reason I would love to get on the news. I want to rant about the doctors that have turned me away, made me feel like I was a waste of time, and belittle me to the point where I do get depressed. Why is it they have those pain charts on the wall, and I am laying there moaning in agony and throwing my guts up, and they refuse to believe I'm in pain. Plus, if a girl who suffers from constant hiccups can make the news and get help…why can’t I?

There it is in a nutshell. I'm 28, and ever since 1999, I have suffered off and on from severe abdominal pain, nausea, and vomiting, but I have not really been diagnosed. I can't eat, I can't sleep, and the whole fiasco and affecting everything around me. I have been told by psychologists that I deal with the stress of handling things, but its beginning to take a toll on me. My daughter asks me, "mommy, why are you crying,” that just makes me want to cry more. Will this happen to her too? She seems to be perfectly healthy; I would never want her to go through this.

I just started taking a medication prescribed by the neurologist called propanolol, but it’s not in my system enough to make a difference. At least not yet. The neurologist said to give it 2 weeks; however, the last 2 weeks have been absolutely ***l! I told an ER doctor I was scared, his response was, “well you’ve been suffering from this for years, you aren’t going to die!” Well thanks doctor, go back to sticking your head up your **s! And by the way, numb nuts, one day you will know what this kinda pain feels like…because karma is a ****h. I’m truly fed up.


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