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]

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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]

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!

24 Hours in a Hotel Room

Written on 4/10/14

I just need to document my most recent episode which was about a week and a half ago now. I was working out-of-town on night shift and staying in a hotel for 5 days. Day 3 I was at work and around 3 am began feeling severe heartburn that almost always precedes vomiting. I ate 4 Tums, felt a little better but still vomited. After vomiting I felt completely better and I had labeled it a little dyspeptic nausea. I finished my shift just fine. Went to the hotel and ate the hotel breakfast. Yes, I know I shouldn’t have eaten that crap, but it saves me money when I’m out-of-town so I stuck to biscuits and eggs. After eating I felt the nausea within 10 minutes. It quickly escalated to episode strength and I was vomiting before I knew it. Wal-Mart was literally next door but there was no way I could have gotten there. I called the front desk and asked for them to bring me up Gatorade. They did. It was a relatively mild episode as my vomiting was about 30-40 min apart. But I was just nauseous enough that I could not get to sleep no matter what I tried. Nothing worked, not even MJ. I think the reason it didn’t work is because I really couldn’t get a good enough hit from the piece I had with me. Couldn’t get enough of it in me at once basically. So, I repeated the vomiting every 30 min or so for a full 24 hours in the hotel room before I finally fell asleep for 3 hours and woke up ok. I spent about $25 in cash paying for all the Gatorades the hotel brought me because they were out of the machine for $2 a piece. I was afraid that I was disturbing the people next to me, so I was trying to heave and vomit as quietly as possible. I felt bad for having to vomit into the trash can that was full of trash so that I could stay lying in bed in attempt to sleep. I left a note telling them to be careful with the trash bags, but I had double bagged and closed them up for them. I bet there was 5 gallons of vomited Gatorade in that bag. Things like that bother me and make me so self conscious. I can’t stop thinking about that even though I know that I made huge efforts to prevent anyone having to deal with my “remains” lol. But it is what it is and I tried my best. I had to call in sick for my last day of work for the week while my agency paid for a hotel room and per diem for me to vomit in my room. That makes me feel terrible but I can’t help that either so I just try to forget it. This most recent flare up has caused me to be unreliable in regards to traveling for work. I hope this is just something related to the birth control. I still feel that the more time that passes since taking out the Nuva ring, I’m feeling better and like I’m less likely to have an episode. I might be proven wrong, but it’s a strong gut feeling. I still haven’t been able to get an appointment with the gynecologist yet, and I’m not even sure that will render results. But, I still plan to go soon to discuss the hormonal component if nothing else.

Two In A Row!

Written on 3/18/14

It’s been over a week ago now, but last Friday I had another episode begin at work. It was the same horrible story as last time, except I had to drive 1 hour 15 min instead of 40 min like last time. It was slightly less intense than last time, and I made it home thankfully. Stopped the episode at home when I got in the bed and smoked MJ. It stopped nearly immediately after smoking. No ER necessary, thank goodness. Then i slept, and woke up later with no nausea. (Oh, and we had dinner plans that I had to cancel with an old friend I hadn’t seen in years and was really excited to see her after months of trying to plan a time to get together. uhhg)

Usually, once I have one episode, I am good for about a month. At least two weeks, anyway. I was feeling ok the next day and had eaten a little. Not much energy, but I was good to sit and hold a conversation. We had plans that night to take my cousin out for dinner and dancing for her birthday that had already been postponed twice. She offered to postpone again, but I didn’t want to and gave the disclaimer that I wouldn’t be a dancing queen that night. We made it to dinner, where I ordered steamed veggies and broiled fish to be safe, but I ate a stuffed mushroom appetizer. I can barely resist those!!! I didn’t resist those, I guess. So, in 5 minutes I was in the bathroom vomiting and had to ask to go home halfway through dinner. Stopped it at home again after getting into bed and smoking MJ. Again. Same story.

I have never had an episode 2 days in a row. Yes these were mild, as I was able to stop them at home, but I’ve still never had that happen and thought I knew my pattern better. I thought I was safe for the night. But this thing changes, and that is something that has definitely changed. Maybe it was because they were more mild compared to other episodes, and it might have been like coalescence where the last one never really stopped. But it felt like it stopped!! I really felt good enough to attempt to have dinner out and maybe watch other people dance, but my body disagreed with me there.

I hate it when it changes!! I want to be able to predict my pattern… Not really much to say to that, except, “tough crap”, huh? [confused]

My First Episode of 2014 is History

Written on 2/15/14

*Warning:* This post gets a little bit graphic and gross. If you are eating, you might want to wait until later to read this 🙂

Last Friday. A week ago. The first ER-worthy CVS episode of 2014 is officially down in the books.

I was at work. At about 10am I ate a snack and shortly afterwards felt nauseous. Went to the bathroom and vomited. Thought, “No, please, no!” Stood there a few minutes and breathed. The nausea went away. Whew! But, in the back of my mind I knew I didn’t feel quite right and I was slightly worried, but I tried to push it out of my consciousness and continue working. So that’s what I did. Then at lunch, stupidly, I ate lunch. It went down ok until there was one bite left. Suddenly, the nausea was back and worse than before. Went to the bathroom and vomited. This time the nausea didn’t go away. It got worse. Vomited some more, and thought “oh sh*t”.

I walked out to let me co-workers know that I was sick and was about to have to leave before it got worse. I sat in a chair and tried to breathe for a few minutes. It was rapidly getting worse, and I didn’t sti there for long before deciding that I was wasting time, and I had better get my pukey self to the house before I became completely incapacitated. Called the sup and said I was leaving immediately. Got in the car and started driving. It was getting worse fast. Lucky I had a trusty emi-bag in the console. It became an extension of my face in a matter of seconds.

I had a 40 minute drive in front of me. This was not good. I knew that I shouldn’t drive, but the alternative was to become trapped 40 min from home in a poultry slaughter facility which would have made it necessary for co-workers (who don’t even know what CVS is) to care for me while on the clock. This is not cool on multiple levels. All the co-workers are subordinates. I don’t even like for family and friends to see me in episode, much less people over whom I have authority. I can’t stand the thought of poor, innocent strangers having to care for me like this. So I drove. With eyes glued to the road and mouth glued to the emi-bag. And I drove way too fast, in efforts to get home before I became completely incapacitated. About ¾ the way home it was completely obvious that I shouldn’t be driving at all. But stopping wasn’t an option bc that would have left me sick on the side of the road in the car. I needed a bathroom and to take my clothes off because I was completely drenched with sweat by this time. I was also in full-blown panic attack mode.

Oh, and the hubs was working 1 hour from home and 2 hours from my work, so calling him to come get me wasn’t a reasonable option either. I called him when I left work and let him know what was going on. He left work immediately and began driving to get home and take me to the ER.

It was the longest 40 minute drive of my life, I’m pretty sure. I mean, any time feels like eternity when in episode, and I have had my share of seemingly endless rides to the ER. But this was the first time that I not only had to endure the time riding, but I had to be the functional operator of the vehicle for the entirety of the trip. And let me tell ya, it sucked…. I wasn’t exactly conscious of anything other than keeping it between the lines, keeping my eyes on the road, and keeping the vomit inside the emi-bag. I think I should win some sort of driving award for managing to do this down a steep, winding mountain drop-off road. Executing turns and braking for other traffic were also EXTREMELY difficult to pull off safely.

FINALLY, I arrived at the house. Imagine me nearly running inside while bent over at the waist, carrying all of my bags and computer. I fly into the house and drop everything on the ground the instant I cross the thresh hold of the door. I never slow down as I head for the bathroom while yanking off clothes and leaving them in a trail behind me. I wrapped up in my trusty terry cloth bathrobe that helps dry the sweat off me and continued to be miserable in the wonderful privacy of my bathroom.

This post is about to get gross and graphic, so I’m warning you lol. I have always had some diarrhea at the beginning of episodes. Usually I get empty pretty quickly and I am left only to deal with the vomiting. This has been changing over my most recent episodes. I have much more diarrhea in an episode than before. The problem is that after a certain point I am utterly unable to control it at all. It’s like when you don’t have anything to vomit, and then you dry heave. My bowels would cramp and instead of feces I was expelling clear ACIDIC fluid. It was torture. It burned like my ass was on fire. I was panicky and embarrassed that I couldn’t control it so I put toilet tissue between the cheeks to catch it, which made my skin raw. It got worse and worse until my entire “area” was red, swollen, inflamed, and very painful. So much fun.

I was getting about 10 minute breaks between vomiting and I really wanted to try to fall asleep on my own instead of going to the ER. I’m so stubborn. It wasn’t stopping. Hubby got home and helped encourage me to go and get the meds to make it stop. So we got “hospital ready” and went. The past several times I have been to this ER it has been a good experience overall, and I’ve had the same doc treat me appropriately there several times now. He wasn’t there this day. I got someone else who didn’t know what CVS is, of course. I could tell from his attitude and manner that he was skeptical. I was in a panic attack and wasn’t communicating effectively. He left the room after only being in there for about 2 minutes and announcing that he would be right back as he left. We hadn’t gotten a chance to talk about the medications and dosages. He never came back. So I end up telling the nurse what I need. I try to explain that they have to give the dose that is in the Empiric Guidelines, which I gave them earlier, and not to be afraid of it. I knew they weren’t going to give me enough bc she just kept saying the names of the drugs that they would give, but she wouldn’t say how much. Just that they “are going to give me the meds”.

So, after being drained of nearly all my blood onto the floor by the new nurse who was learning to put in an IV catheter, I finally got the meds. I felt them hit and felt the relaxation – a little. And only a very mild decrease in the nausea. Normally I drift off to sleep in seconds after they give it. I knew after a few seconds when all I felt was a little relaxed that they didn’t come close to giving me enough. So, of course I spoke up and said so. But, I was sedate and slurring my words while saying they didn’t give me enough and it wasn’t working, so they thought I was being belligerent and seeking.

And every time that I would lose control of my bowels I would have a mini panic attack. They would all look at me like, “what do you want us to do about it?” Ok, I get that, but they didn’t even offer me comfort or anything. Just looked at me like I was an alien when I said that my arse hole felt like it was in a burning fire, and I couldn’t be still because of it. (Once we got home I put some skin ointment on it, which initially made the burning a million times worse, despite how I would never have thought that possible. But it helped after a couple of applications. By the next day I was normal again.)

They wouldn’t give me any more meds so I had to go home still awake, which I wasn’t happy about. They only reason it is worth it to endure a trip to the ER is knowing that I will be completely unconscious soon, and when I wake up it will be over. If I had known I would have just had to bear it at home anyway, I never would have gone. But if I have to look to the bright side, I probably got to sleep faster once I got back home as a result of the meds they did give me. They knocked the edge off, but only barely. It still took me several hours to get to sleep once I was back home in bed. Then, finally, I woke up, and it was over. The nausea was gone and I felt like a person again. It took me the rest of the week to feel normal again, however, as I had zero energy and needed more sleep than normal. I didn’t eat normally for a week either.

Thinking about possible triggers…. I sometimes don’t do well if I eat a lot of protein, and I had eaten nearly a pound of steamed shrimp the night before… I had started a new vitamin/supplement within the week before the episode… I have been back on birth control for two months now after not using any chemical method in about 3 years. In past years I had more episodes and other issues when I was on birth control, so I had come off it for awhile. I decided to try using it again. I feel it might be the most likely factor in any recent changes that could potentially have caused an episode. I have always been convinced that hormones play a major role in this process somehow.

Lessons learned this go-round include:

Talk meds and dosages immediately and don’t let the doc leave the room until you are done communicating all you need to and are satisfied they understand and are willing. (I say this every time, but when I’m actually in the episode it is much harder to think about what I need to say.)

Wear diapers/depends, whatever, so I don’t have to worry and feel embarrassed about the inability to control bowels. (I bought some and am weirdly looking forward to the comfort they should bring in an episode.)

Apply skin ointment to ass prior the acidic diarrhea to prevent pain and inflammation. Like baby butt paste for diaper rash.

P.S. Does any other poor, unfortunate soul have to employ diaper and butt paste interventions the way I have described here?

And with that, I end the post, and I hope not to have to wear diapers and butt paste any time soon.

My Streak Has Been Broken

Written on 9/2/13

On Saturday, I had a CVS episode that was bad enough to send me to the ER. It was the first one in almost 3 years that I couldn’t handle at home.

I am pretty sure I know exactly what triggered it. We drove 3 1/2 hours Saturday morning to go to the college football game of our alma mater. Had a blast. Went to a margarita place to have a couple of drinks. I have been able to drink socially for years with no symptoms, but have been triggered by alcohol before.

The second drink I ordered was a tropical mango drink that had all this yummy tropical stuff – and then also jalapenos. Gag. Not only gag, but those things make me sick almost every time I have eaten them since having CVS. The rest of the drink sounded awesome, so I just ordered it without the peppers. I took one sip and could still taste it immediately in the drink. The mix they made for the drink apparently had peppers made into it. It was horrible, and I felt sick almost immediately after swallowing it. I sent it back and got a different drink.

Before we left the restaurant I had to go to the bathroom to vomit. After that i felt ok and we continued with our day walking around the town in the scorching 90 degree heat. I had a few other things to eat during the day at some tailgate spots and still felt fine. About halftime (8:30 pm) we decided to drive home. We were hungry so we drove through Wendy’s. I got a jr cheeseburger and ate the whole thing. Almost immediately I knew I was going to be sick. I asked hubby to pull over. Vomited and got back in. Repeated this several times on the way home.

I was having about a 10 minute break between vomiting spells, which is uncommon for me. I usually get NO relief whatsoever b/t pukes. It is constant nausea, gagging, heaving, and vomiting with no relenting. It confused me bc I thought, “maybe I’m just sick, maybe this isn’t an episode. Then the longer my hubs heard me heaving in the back of the jeep, he eventually said, “baby, it sounds pretty episode-y to me”.

The cheeseburger was the last straw, but I know it was that drink that started it all….

We went home first to change out of sweaty ballgame clothes and get hospital ready. I tried to give it a chance to go away, but it was consistently coming every 10 minutes or so and then lasting about 3 minutes before I could breathe again. I was about to tell my husband that we would go in an hour if I didn’t feel better by then. Then I realized I was being an idiot, and said, “let’s just go now”.

So we did. I magically got the same doc that treated me before, so he remembered me and had my charts and what meds worked for me before. They made me a lovely cocktail of Ativan, Thorazine, Benadryl, and Protonix and gave it all to me IV drip over about 3 minutes. It did the trick.

Usually I need about 3 hours sleep undisturbed to reset fully in order not to vomit again when I wake. I didn’t need so much this time. I think I was only down for 45 min or so before they roused me and got me in the jeep all zombified. I don’t remember it, but my husband said that when we got home and he went to get me out of the back of the jeep, I didn’t want to go in, and wanted to stay there and sleep. He had made me a super comfy spot back there to lay while we drove. I guess I was too comfy and didn’t want to move. And I was probably afraid that if I moved I would vomit again. Then suddenly he said I woke up and wanted to come in. So he got me in lol.

Still don’t feel quite right, but trying to ease back into food again. Hoping that this was just an episode out of the blue. Maybe I will still go another 3 years without having another one. Guess I just have to wait and see.

I did not miss this. It was a mild episode relative to all the others previously. But it was still torture and I did not miss it at all.