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

 

My Supplement Regimen

Written on 10/14/14

I thought I would share what I’m using in the way of supplements. I’m trying to do the most with supplements and natural preventative methods such as diet and lifestyle changes. I’m really stepping up my game here. I am weaning off nortriptyline and these will be my only preventative.

Currently taking:

CoQ10 – Bio Sorb Active Q Ubiquinol twice daily from Epic 4 Health. Ordered online and get a discount by stating that I use it for CVS.

L-Carnitine – Naturally Carnispan Time Release L-Carnitine Fumarate twice daily also from Epic 4 Health and get a discount.

I had my CoQ10 levels analyzed when I went to Dr. V last week. Just got the results, and I am more than twice the number of the upper normal range. I’m only slightly above the range Dr. V recommends, so I’m backing down and taking them twice daily rather than 3 times daily, which I have done for several months now. Now that I know I am established in CoQ10, I’m going to try adding the riboflavin and magnesium to see if it helps. While searching I found the products below.

Just ordered and am about to start taking:

Preventa Migraine- with PA Free Butterbur Root (Petasites), Magnesium, Riboflavin, and Feverfew– 60 capsules. Sold by: Family Tree Remedies. I ordered this online through Amazon Smile and ensured that CVSA got their donation from the sale. Price was $38.09, should last a month. It is free of pyrrolizidine alkaloids (PA), which is important to be aware of if you buy this product. PA damages the liver. This one is safe in that regard.

Sold by: AJM Nutrition Price $31.49. Also got this through Amazon Smile. I have been really wanting a good probiotic to support gut health and digestion, and these are the most natural ones I have found. And they have 32 different probiotics, not just 2 like the ones in the drug stores. They also seem to be from a reputable company as well. I read that Garden of life Raw probiotics are the #2 probiotic listed out there today. The #1 product was not natural, however, so I went with this one.If anyone has used any of these before, I’d love feedback.

 

Goal = Wean Off Nortriptyline

Written on 7/18/14

Wow, I’m really gonna do this!!

I saw the psych today that scripts out my nortriptyline. Last time was 6 months ago. I updated him on going to the conference and about finding the positive correlation between my having regular episodes and wearing the Nuva Ring. He agreed when I told him I’d never take hormonal birth control again. I told him about going on the supplements seriously and how it has made a drastic difference in my energy levels. He seemed excited (genuinely so, I think) when I told him I’d been running about 10 miles per week, and that I have hardly any anticipatory anxiety about episodes. He loves that I am using exercise and diet as preventatives. We also discussed that nortriptyline is now a class D drug in terms of pregnancy. (*note* I have since learned that this isn’t true, and it is still class C.) He agrees that it is dangerous for me to take it when I am not able to use a more reliable form of birth control. So, when I suggested weaning off, he was very supportive and completely on board. He said he thinks I’ve come a really long way and he thinks I can do this!! He is very encouraged that the natural route seems to work on me and encourages me to keep it up. I really think he trusts me when it comes to managing my medications! Such a good feeling, for a change, to be praised by him, (or any doc). I have felt in the past that he didn’t really know what to do with me, even though he’s never made me feel like a nut. I think he was encouraged that a tough patient is doing well. I left feeling good and with confidence that he is supporting my decision to do this.

I have SO got this! Hoping I don’t have to eat those words later, but I really think I’m going to be able to do it. Cheers! [smile]

My Pretty Binder for My Ugly Disorder

Written on 5/6/14

I am in the process of making a “CVS Binder” (a two inch 3 ring binder) that will basically go everywhere I go and that I will give to ER staff and doctors who don’t know me.

I’ve included the following “sections” separated by tab pages:

An “intro” section at the front where I typed a brief statement (“Hello. My name is Angie and I have CVS”) telling who I am and what I have going on with me. I mentioned that I might not be able to communicate but that all the information they need is in my binder that I brought for them. This section also has the “What is CVS?” document from the CVSA homepage, and some other 1 page documents describing CVS in general and briefly.

A “current medications” section where I list in detail meds, dosages, frequency, and time of day taken. i list current meds regularly taken, as well as meds that I only occasionally take including over-the-counter supplements and vitamins.

A “medical history” section where I chronologically list every doctor appointment and lab results associated with it. Also any diagnosis complete with the diagnosis code is highlighted throughout. I used different colors for different docs. I used green to indicate episodes, and I even used orange to document events like vacations that happened around episode time that show a strong correlation to positive excitement. Also my periods are documented and they also show a very strong correlation to episodes.

(It has been super helpful going back through all my old medical history documents and piecing it all together chronologically. It turns out that the two times in my life when I had episodes every 1-2 months was when I was using the Nuva Ring! Now I’m CONVINCED that my hormones are one of the biggest players in this game my body is playing.)

A “tests” section where I have copies of all the important tests they have done to me over the years to rule out everything else and diagnose me with CVS. Including MRI results and blood work.

An “episode diary” section where I have copies of all my entries for each episode and list detailed info about the actual individual episode I was experiencing at that moment.

An “Empiric Guidelines” section where I have many copies of it to give to anyone I think will read it.

A “CVSA” section where I have Code V articles, a list of the CVSA medical advisors and their contact information. And any other general CVSA stuff I want to throw in.

And a “research articles” section where I have all the lists of the research articles as well as a few of the more important articles printed out to keep there for doctors to reference.

My goal is to have 3 separate identical binders in the end. One for each vehicle so I’ll always have one with me. I’ll take one when I travel and on vacation. I travel alone for work a lot, and other people have no idea about my disorder, so this could help if I were in a situation where other people had to care for me that aren’t used to doing so. This binder will introduce anyone to CVS, and give them the ability to look back into my medical past in as much detail as they want without having to go find or wait on records.

I have this little dream that I could have to go to the hospital alone, and I hand them the binder at the ER, and they read it, and I don’t have to speak a word because they understand what to do, and then they do it! Ha! Well, wouldn’t it be nice if it were to work that way, but I doubt it will. I’ll still dream it though [smile]