Birthday Girl Gets An Episode

Written on 10/22/14

Happy birthday to me! In 8 years of having CVS, I had my first episode on my actual birthday when things were planned for me. I’m not a fan.

Drove to Birmingham to meet my best friend. 2 hour drive. We got nails done and met friends for dinner. I played it so safe and only ate whole foods all day long. Nothing that has ever been a trigger. No alcohol at all. Trying everything to prevent what I felt would happen in the end.

Speaking of that… Which was it? Did I have a feeling that it would happen, and that feeling came true? Or do I always have a feeling things like this will happen when I have positive excitement, and when they do happen, I  then later I just assume my feeling came true. But, could it have been that it would have come true anyway, or it might not have, and my “feelings” have nothing to do with it? Like a self-fulfilling prophecy almost? That probably makes no sense at all to anyone other than me…. But I wonder how much my excitement and anxiety push me over then edge, or if I would have gone over anyway…

Any who… I started feeling the prodrome during dinner and tried to ignore it and make it go away. This rarely works but I’m still stubborn and try. Then I took meds. No effect at all. Still nauseous. We were scheduled to play laser tag after dinner because that’s what I had told everyone I wanted to do. We go there and I decide to try to vomit in the bathroom and stop it before it started. So I did. And felt better for all of about 5 minutes. Then it all came back. This is while we are waiting to be called back for laser tag. So, I got to a point that I knew I wouldn’t make it out of there without vomiting, and I also knew I was getting too nauseous to have any kind of fun, and getting on my way to being too nauseous to function. I didn’t want to get stuck inside that maze and need to puke. So I very embarrassingly told everyone who showed up to play laser tag with me that I was too sick to try to play. They were understanding but I felt like a complete ass anyway. They were only there because I wanted to do that. My friend had bought my tickets and they were non refundable, which made me feel horrible. I went to the car and puked in the backseat while they played. They tried to get me to let them take me home right away, but there was no way I was going to let them all leave without at least playing the game they had showed up and paid for. So, it was about 30 or 45 minutes in the back of the car puking and waiting on them. Of course, by the time they came out I was much worse than when they had left me and they all felt horrible about it.

My friend brought me back to her place where I completely destroyed the guest bedroom of her apartment with my flailing and thrashing about all night. I’m sure her apartment neighbors could hear me puking and no one got any sleep at all. She had to go buy me Gatorade in the middle of the night. She’s an amazing friend and she didn’t complain at all. But she did get really upset. It’s the 2nd time she’s seen me in episode. She gets upset when she can’t do anything to help. I nearly felt like I needed to comfort her, instead of the other way around lol.

Oh, and I tried the injectable sumitriptan. She injected me with it twice, as directed, throughout the episode, and neither shot did any good at all. Nothing. Nada. I didn’t even get the weird sensations people say they get for a few seconds when they take that stuff for the first time. I didn’t feel anything from it. Not a blessed thing. The “things migraine” don’t ever seem to help me at all, and that’s been consistent for years. So, now I know yet another abortive drug that DOESN’T work for me lol.

Also, we talked about how I probably shouldn’t go on our Girl’s Trip weekend that we have planned in November. To the Grove Park Inn and Spa in Asheville, NC!!!!! A RELAXING trip, no doubt, that would become much less relaxing to the others when I interrupt it with an episode. Because I look forward to it so much that I get sick, no doubt. I try not to be a pessimist when it comes to this thing. I try not to let it control me or keep me from living my life. But I have been back on a once a month, if not more, pattern for several months now. That’s a big flare up for me, and something, I’m not sure what, is not letting my efforts with diet count for fewer episodes.

I think my hormones are changing, based on occasional erratic periods that are becoming erratic more frequently, despite that the ONE hormone test I’ve had done recently says “normal”. And I think that hormones and positive excitement are my most consistent triggers. I think by keeping hormones under control I have fewer episodes, but when they are out of whack I have more that happen during positive excitement circumstances. Just grasping at straws as usual when I’m discouraged….

I know my diet is helping, and that it might take years for it to help on a large-scale. But I feel that hormones and positive excitement are triggers outside of that box, if you will, and those are going to need to be addressed separately.

So, I’m feeling a little down about having to step back from the spa trip that I have already paid for. I don’t want to go get sick, and I don’t want to ruin their time if that happens. There will be more in the future. sigh…

Back to the episode….

I wasn’t at home, 2 hours away. I had my meds with me, but none of it worked at all. I couldn’t fall asleep, period. I flailed around for nearly 24 hours before giving up and calling my parents to come get me. They had to turn their day upside down to do it, but they did it. I love them. And they brought me all the way home. I slept for 30 minutes on the drive home, and that little bit of sleep helped to stop nearly all the nausea. It gradually went away after that, but was tolerable, as opposed to before at her house where it wasn’t subsiding enough for me to drive home. I actually talked to my dad most of the way home, which is a good sign for me. If I’m nauseous, I’m generally not talking unless it’s absolutely necessary. Then I got home and finally smoked. And it all went away. Just like that. Makes me never want to leave the house, and how sad is that???!!!

It took 2 days for my energy to come back though. I stayed in the bathtub nearly all day on Monday, and spent Tuesday making food that I can eat for the rest of the week. My hubby is out-of-town and I didn’t realize how much energy it would take for me to be by myself the 2 days after an episode. I should have realized, it’s like this every time I can’t stop them and they go on for any amount of time. But I didn’t realize, and ended up taking 2 days off work this week that I didn’t have available to take. I’m out of sick leave and covering with my vacation time. Which blows. But I’ve been out of both before, and I shouldn’t complain as long as I have some time to use.

Something has to give. Why oh why am I in this flare up that won’t stop? Hormones? Anxiety still?

I’m very stressed in my personal life, and I don’t handle it well. I have made lifestyle changes that help me to feel better between episodes and about my life in general, but aren’t helping my episode frequency per se. I think I’m emotionally overwhelmed at home. I really think it’s making things worse. But how do I do anything about that? I can’t stop the daily stressors of life?? I try to handle them well, but some things just make me so upset that my body is getting distressed too. These are the things that we can’t escape in life, so I don’t know what to do.

 

Woman Crying

 

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Some Doctors Are My Nemesis

Written on 4/24/14

Yesterday I decided to walk into my general practitioners office to have blood drawn. I want my Co-enzyme Q 10 (CoQ10) levels tested before I start on the supplements to know what my baseline is, and if supplements change it at all. And I wanted him to prescribe the L-Carnitine. I haven’t taken the supplements in almost 4 years, but I’m stepping up my game since I have had episodes breaking through after a long period of wellness. I want to make sure that I’m doing everything I can for my mitochondria. I love that I can use natural supplements to do so.

I didn’t get to see my doctor. I was pawned off on the nurse practitioner AGAIN who has seen me the past several times I have been in. The last time, the reason for my visit was to make them aware that I had several episodes over the last several months. That’s when he pulled out his phone and looked up what the Mayo Clinic says on CVS. I wanted tell him I could regurgitate all that to him if he would just listen to me. I get the feeling they think I am a hypochondriac. Maybe it’s because I don’t go to the hospital where my general practitioner is an attending and they don’t see my episodes. I’ve had better luck in the ER in the other hospital local to me, so I just go there and none of them at my general practitioner’s office ever know about my episodes until I report them later.

Anyway, the first thing he did was walk through the door and address me as “trouble”. I was crestfallen immediately. I can tell without a doubt that he knows nothing about this. I had anticipated having to see him instead of the general practitioner who does actually know about CVS, so I brought him the research article about treating adults with CVS with Q10 & Amitriptyline. He flips through it for 5 seconds and then says, “I wouldn’t put much stock in these type of studies”. (This is a good study!) I was on my defensive big time. I told him I have researched this in-depth for 7 years now and that most of the information I use is anecdotal from the message boards and that the only reason I brought that to him was so he could see a reference that would justify my asking for the test and the script for the supplements. He kept trying to be dismissive about things I said as if I was some crazy person making things up. He kept ignoring me when I spoke to continue typing into the computer. I also gave him a copy of the 2008 Empiric Guidelines for Treatment of Cyclic Vomiting Syndrome and told him that I meant for him to keep the research article and empiric guidelines for him to read about it later. He handed them back to me 3 times with me saying “I brought those copies for you”, as he continually handed them back. He finally took them out of the room and I’d bet anything he just tossed them.

He did finally agree to script me out the supplements. The lab there couldn’t accommodate a blood sample for CoQ10 because it has to be frozen and protected from light. (He had to go look it up to tell me that) And that I would have to go to the hospital to have the blood drawn. He then starts saying that it is probably an expensive test and my insurance might not cover it. I asked him how they could refuse to cover a test for which I have doctors orders that is concurrent with the treatment of CVS for which I have the diagnosis. He shrugged his shoulders, said that he had put his “stamp of approval” on it, but didn’t know what would happen.

He then said, “If it were me I would just take the supplements and be happy if they help. Why do you HAVE to know your current blood levels if it makes you feel better?
I almost came apart. I said that no I didn’t HAVE to know, but that I wanted to contribute to the research on this disorder. He sighed and said ok.

I do not understand this attitude in a medical professional! Why why why would a doctor be so uninterested in something that is a debilitating disorder for people?? Why would you not encourage all the testing possible in efforts to learn more about this?? As a veterinarian who has been in private practice, I can tell you that when unusual things come in we eat. it. up. It was a great day when I could learn something new and say that I have treated something successfully that most other vets won’t have the luck to come across in private practice. Those are the little gems we hold near and dear to our hearts and brag about when we are in a room full of other veterinarians. I simply don’t understand any attitude that is less than enthusiastic about learning.

I could tell that this guy had no interest whatsoever in learning about CVS. I don’t want to see him again. I’m thinking about firing the whole practice if my next visit is the same. I have an actual yearly appointment with the general practitioner soon, so I should get to see him and not the nurse practitioner, but if they give me the nurse practitioner again on my yearly visit with my doc, I’ll pitch a fit right there and not leave until I see him.

I can’t even begin to bring up topics such as mitochondrial dysfunction to discuss in more depth because the people here don’t even know the basics of CVS, and might not even believe in it.

I need specialists. I need a neurologist to talk about dysautonomia with.

At least I didn’t leave empty-handed. I have orders to give a hospital for the blood work and I now have a script for L-Carnitine and CoQ10. I will have to see if insurance will pay for the blood work before I go, because I don’t have extra funds for it now.

Just SO frustrated now. I know I’m not alone. Thanks for the vent!