My illness has been complicated, but the synopsis of it is that I have nausea 24/7/365 and have for 4 1/2 years. In the beginning I was just too nauseous to eat and lost 50 lbs. My doctor tried different anti-nausea medicines but none worked until she got a medicine that is given to chemotherapy patients to lessen their nausea - that pill is called Zofran.
Once I got on the Zofran it masked the nausea and that mechanism that tells you that you are hungry came back to me - I gained my weight back - and was able to live a functionable sort of life... though, some times were better than others. I missed out on a lot of things these past years because I have different degrees of nausea. The first I call my “normal” nausea; the pill will work for that. The second, I call my “death” nausea. I call it that because I feel so sick, and it is what I imagine someone dying of something horrible might feel like; the pill does not work for that.
During the past years I had more times where the pill would work and less times when it wouldn’t. Now, in the last month-and-a-half, things have changed. I don’t have “normal” days anymore; I only have my “death” nausea days and I am back to losing weight again. I can’t function when I feel so bad. I told my sister that I can only try to do 3 things every day in the state I’m in: force myself to drink my smoothie and drink some soup broth, make my health appointments and write a 100 words a day. I’ve failed at all three. I do as best I can.
During the course of trying to figure out what was causing my nausea my doctor had done pretty much every conceivable test. At the beginning it was thought to be a stomach problem, but the test contradicted each other. One appointment I asked her what the mechanism was that allowed the Zofran to help me (this is back when it helped me) and she told me it was a brain chemical mechanism. So, I told her maybe we should start looking at the brain. She agreed.
She set me up to have an MRI of my brain done. I asked her if it would show if I had an inner-ear problem, thinking that may be what was making me feel nauseous. She said that it would. I didn’t think the MRI would show anything. But when she got the results back, to my surprise, it did show something. It showed that I have what is called a Chiari Malformation. But the radiologist labeled me as a Chiari 0 (there are 4 levels). And a Chiari 0 is too insignificant to have an affect on you. Or so the neurosurgeon and the neurologist I went to after the diagnosis both said.
But I got on the internet and read that severe chronic nausea was one of like, 49 different symptoms that can present with Chiari. And I also read that the onset of symptoms usually occurs around age 28-30 (when the brain stops fully growing) and that’s really when my nausea started, though not so debilitating as what came in the past 4 years. But hey, I was told I was a Chiari 0 where it’s so negligible that you don’t have any symptoms.
I didn’t believe them. I thought it was too much of a coincidence to have some condition - I had no idea I had - wherein symptoms develop most often at the age in which mine did, that I had one of the symptoms, and that there was usually a trauma that often caused the symptoms to present in the first place. I had that one, too! At around age 27 I went into anaphylactic shock and because I was (for me) young and stupid and on a party road-trip I ignored the symptoms and went to bed and when I woke early in the morning my head was like the “elephant man” and I couldn’t breathe because all my airway passages were swelled up. I went to the emergency room and got taken care of, but I think that was my “trigger” event.
The funny (I guess I should say, interesting) thing is that all these years, long before I even knew I had this Chiari malformation, whenever I tried to go back in my mind to when I was healthy and normal to when I became sick, the dividing line was always that anaphylactic shock episode. It was so long ago I didn’t have a date timeline perfectly pin-pointed, but, yeah, my mind just was like, before that episode I remember being “normal” sometime after that, I wasn’t.
Long story even longer. I decided at the very least I probably should try to see if Cranial Sachral therapy would work on helping - it’s a manipulation therapy - and I traveled 4 hours round-trip to go to a specialist. I went to him six times between August and September of 2013. I don’t think he cured me, I still had the nausea, but looking back I definitely think he must have helped because it allowed me to be fairly good going to New Zealand and for the three months after I returned.
Anyway, since then the more research I did on Chiari the more I found out that there is an old-school/new-school “war” going on in neurology about putting a number - a level - on Chiari. The new-school’s research is telling them that you can have two people in the same family (it’s thought to be rare genetic condition) and one of the members can be diagnosed as Chiari 1 and have no symptoms at all, and the other member who is diagnosed as Chiari 0 does present with symptoms. The old-school guys are skeptical of the new-school research. Thus, the reason the neurosurgeon and neurologist I saw said my symptoms could have nothing to do with me having Chiari since I was a “0.” But, I have to say, with me and medicine, I’m usually a f@ck-the-old-school-guys kinda person.
Today I was having a very specific test done. If the people doing the test knew what they were doing - and I say that because it’s a “newer” test and it isn’t being done through a neurologist - my doctor just decided to get it done without them - I was going to get what’s called a Cine MRI done. Like I said, if they got me in there right and knew what they were doing, they should be able to see if my Chiari Malformation is causing a problem to what's called CSF (cerebral spinal fluid) flow, measure the amount of flow, or blockage, and follow - if the fluid is flowing - where it's flowing in order to see how it might be affecting my body. That test would give me a lot of information. If there is a blockage, or a flow problem it is probably what is causing my severe nausea (though, in the research study, there was one patient who had Chiari, with symptoms, but no leakage).
All last week I was trying not to think of today's test as I am very claustrophobic and have never been in a normal MRI machine (always having to go the “Open MRI” route), but in order to do the Cine MRI you have to have your body fully in the "tube." My doctor told me on Friday that she ordered the test with sedation so I was hoping I could do it okay being a li'l drugged; more like praying I could do it!
Then I get a wake up call (literally) today and it was my doctor calling to tell me that my Cine MRI could not be done with sedation. I think I said a lot of f@cks! And she also reminded me that there would be a mask over my head. Pretty sure more f@cks came out of my mouth.
I got off the phone with her and was like WTF am I gonna do? I mean, I've had anxiety attacks in a house - that you could walk to different rooms in! - at 3:00 AM and had to go out in the dead of night and walk the streets until I calmed down. This was not a good feeling situation that she had just told me about.
But, I was in a worse feeling situation: I had my severe nausea. And, in the end, that was what I knew was going to have to help me get through my severe claustrophobia, the "tube" my body would be in, and the mask they were going to put over my head. I had to fight to stay calm because I needed to have a question answered: could the Chiari malformation be causing the nausea I've had for so many years? Nothing was more important than gaining any knowledge I could, regarding that.
Oh, but I took a 10mg valium an hour before the test, another one a half hour before (that's when I checked in - and because they knew I had thought I was going to be sedated, but had been told I wasn't - they just wanted to know when I had taken my last one and told me I could take another when they came and got me... but they didn't need to tell me that... I already planned on taking at least one more anyway!), so then I took my last one before I went into the MRI room.
Gratefully, my mom had driven me there (at this stage I really can't drive) and I asked her to come into the MRI room. The tech doing the test was really great. Het sat down with my mom and I and talked about what would be done, my worries, what music I wanted to him to play (pop!), and how long it would all take - 40-45 minutes - in the "tube."
But thank God, when he led me and my mom into the MRI room he had me laying down so quickly I didn't even see the "tube" I'd be going into so that was a freak-out situation avoided. He asked if I wanted a light cloth over my eyes, and that was a blessing because then I never saw the mask that he locked over my head... only feeling it be done. And he also said that he would pull a chair up for my mom to sit next to me if I wanted her to keep her hand on the ankle that was sticking out, and I did want that, and it, too, was a real blessing to feel her there.
Probably, many of you all have, at one time or another, experienced an MRI machine and know they are loud, really, really loud (they give you ear plugs and a headset to wear while in the tube) and when they do the test, which are in intervals of between a minute to five or six minutes, it gets even louder.
I was really proud of myself in there. Like, I even said that in my mind, "I'm so proud of you!" And when the tech told me we were on the last five minute test, I thought I did so well I deserved a celebration of beers or ice cream, or something really fun and special, and then I remembered I felt too nauseous to have anything like that. But laying in that "tube" at the very end, I told myself when I got better I was still going to celebrate just that one triumph! And, funnily enough, when I got pulled out of the machine, the mask taken off me, the cloth off my eyes and sitting up, the tech said, "You did so well in there you deserve to go out and celebrate!" Yeah, I thought, someday soon, I hope, I will.
Now, it's just a matter of waiting for the results of the Cine MRI which I will get when I go to my doctor appointment on Friday. If the Chiari is causing a problem it's not going to be an easy road to go because I will have to consider brain surgery. But, if the Chiari isn't the problem that isn't going to be an easy road either because I really don't know what else I can consider and that will be hard for my mind to bear.
I can only concentrate on getting through each day. I will worry about whatever the outcome of the Cine MRI is, or isn't, when Friday comes.
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