This is an update from my last post, My newfound superpower.
I was supposed to start my new job last Monday. I had every intention of somehow powering through, even though I could not stand without thinking I was going to faint and I was in the bathroom every hour for sometimes 15 minutes or more. I woke up at 5:50 in the morning and I knew that I could not make it to orientation. I emailed the HR folks and cc’d my new supervisor, but did not want to give too many details. Telling my new employer that I was recently diagnosed with a chronic brain disorder that will have a great impact on my life did not seem like the best idea. I said that I had a medical emergency last weekend (true) and that I was still suffering the side effects of the procedures and medication (true). I emphasized that I really wanted the job and asked about my options. It was not until 9:00 that morning that they replied. An HR contact was the one that emailed back and she said that the hiring team (my supervisor) was sorry to hear that I was not doing well and wished me a speedy recovery. They informed me that the next orientation date was September 17 and to let them know if that was possible. In my opinion, that was the best possible outcome to this scenario.
My boyfriend has a disaster plan in place. I was so sick that I could not even think of anything other than that and the fact that he has it all thought out for the what if is amazing and just another reason why I adore him so much. I never thought that at 39 I would need a disaster plan in case I could not work any more due to an illness. I mean, I always joked that I wanted an early retirement, but one that involved me shitting rivers while my body felt like it was being twirled around like a lasso was never a part of that dream. The disaster plan basically involves him working 70 thousand hours a week, so while he is up for this, I am very much hopeful that I can figure this shit out over the next 16 days.
I want to give some updates on the disorder, not only because September is awareness month for idiopathic intracranial hypertension (IIH), but also because this is currently my life and I freaking love talking about myself.
The disorder primarily affects fat women in their childbearing years, like me. The medical community basically saw a rare disease and realized it was primarily fat women and so they decided to correlate that to mean that being fat, and a woman (?) were the problem. Okay, nowhere do they blame women, just fatness. And yet, an article in 2016 says that while the medically obese are at most risk, the reason why is unclear. This study from 2009 states that there is no reason to assume that obesity is the cause of IIH and rather may be that IIH contributes to obesity. Or here’s a fun study from 2016 that shows an misdiagnosis or over diagnosis of fat women with headaches just because their doctor thought, “hey this woman is fat and childbearing and has headaches, she must have IIH, let’s make her get every test for it.”
I am now involved in a class action lawsuit against the Mirena IUD. If you google the disorder with Mirena IUD, you will find page after page of law firms looking for those of us to send in our information. There is also this article that links not only the Mirena, but a few oral birth controls as well. I have had a few calls with the law firm and have filed all of the paperwork. I had my IUD removed yesterday. It was a new doctor for me, he was the one that could see me as soon as possible, I have actually never been to a male gynecologist. It was sorta great. He was lovely. Anyway, he sat and talked with me before the procedure and said that he had seen in my chart the mention of the lawsuit and decided to google it. He said that he was angry because he would have been notifying patients of the risk as well. We talked about how part of the legal claims are that providers were not notified by Bayer, and so they are not telling patients up front that IIH could potentially happen. And even if there is a low risk of happening, I can assure you that you do not want this to happen to you.
If you are reading this and have the Mirena IUD, you may want to schedule an appointment with your gynecologist.
The disorder can also affect infants, children, and men. It can affect those that are fit and athletic or those that are skinny and sedentary. There are several groups on Facebook for IIH and the outpouring of support and camaraderie is lovely. You could be talking to someone that has the same scenario as you, someone who has it much worse, or the mother of a child with the diagnosis. I have had lovely conversations online with women thanking me for sharing the story, some said that it was their story too, and how nice it was to have something to share with their family. I added the tag #idiopathicintracranialhypertension on an Instagram post and received a private message from a woman worried because she is currently going through the workup for the diagnosis. She just wanted someone to talk to and give her any information. I am so sad for my fellow IIH folks that do not have the right information. We already are suffering shitty medical care for this disorder because it is so misunderstood, but to walk into a neurologist’s office and not have any idea what they are talking about does not help you be a self advocate.
And to that end, in the last week I have felt so awful, I have not had the motivation to be an advocate for myself. I mean, I had an eye doctor tell me to lose weight. Think about that. He literally said that my vision was perfect, he did not think I even had the disorder, but losing weight would be beneficial.
“Even losing 10 pounds will help,” he said.
That whole visit was a dang roller coaster. I had to go there because I cannot tolerate the Diamox (medication). I was first prescribed 1000 mg and the ultimate goal is to get the dose up to 4000 mg (I cannot ever imagine how that is even possible). The (horrible) nurse practitioner from the neuro team told me that I could only decrease my dose to 750 if I saw her husband who was an ophthalmologist. The worst outcome of this disorder (other than death due to complications from the treatments) is total vision loss, and so I had to confirm that I was not doing any damage to my eyes. So we went to this eye doctor at the fancy UCLA eye institute and he was very nice. He did his exam and during it he said that he did see anything concerning and told the foreign fellow to bring in “all of the fellows” to look as well. Two other women looked in my dilated eyeballs and confirmed they too did not see papilledema. (I was initially sent to the ER where I was diagnosed after a spinal tap because a different eye doctor thought he saw mild papilledema.)
The doctor said he thought that I was misdiagnosed and maybe I was just suffering migraines. He said that I could stop taking the medication. I was in complete shock and unsure what was happening. I just kept looking over at my boyfriend and we both were making that smiling/is this real/wtf face. He said my vision was fine (same that the other eye doc said) and that he had zero worries that I would go blind. He ordered some other tests, including a MRI, but my stupid HMO takes forever to approve them. We left and decided to be cautiously optimistic. This meant of course telling everyone that was close to me and they all had the same wtf reaction. Some of the logical replies that I received were, “then why was your spinal pressure so high?” or “but what about the 9 weeks of headaches?” and my personal favorite:
“I know I am just a nurse, but if we put a patient on medication for high blood pressure and they come back with normal blood pressure we don’t say we must have been wrong and take them off the medication.”
I had not taken my morning dose of the meds yet and decided that I wasn’t going to since he said I could stop them. I decided to go to the support group and tell them what happened and ask if anyone had issues with stopping the meds cold turkey. Every single person that replied was sorta stern with me that I should not take this person’s word for it and get another opinion because you can very damn well have IIH without papilledema (the community calls them “paps“). The thing is, I knew this already from my research, I was just so happy to hear that I didn’t have to take the poison anymore, I went with it. If you are interested, here is a 2009 article about the disorder with and without paps.
I have to get that MRI and I need to see a real neurologist. I have only seen the neuro residents in the ER where I was diagnosed and the horrible NP from the neuro team. My current neuro appointment is set for October 30, but that is way too far away and they say there are no sooner appointments. I am fortunate to have connections both in the medical world and at UCLA, which is my care group, and so I am hoping to get a call from a different neurologist this week for an earlier appointment. A friend of a friend is a neurosurgeon at UCLA and reviewed my case and referred me to someone else who can hopefully get me in sooner. Until then, I have decided to do a combo of the instructions from the eye doctor and the other patients and am still taking the awful pills, but lowered myself to 500. If my eyes are safe for now, I can at least feel like I am protecting myself while not killing myself and wait for the MRI and a neurologist.
The pros of taking the lower dose is that I am not as dizzy. I can stand and walk around without feeling like I am going to faint. I still have the GI issues and am in a constant state of fear that the headaches will come back. I am hopeful that removing the IUD will help the disorder. I know that idiopathic being in the name of the diagnosis means that nobody knows why it is happening, but we can’t deny that it has happened to many women with the IUD. It doesn’t seem to be the cure for it, but some report that symptoms lessen after it is removed.
And to my fellow fat folks, especially those that have IIH, I am so sorry that we are going through this. I am so sorry that research shows that yes fat folks are more likely to have the diagnosis, but that there is no understanding why that is and yet every medical professional treats us as if this is our fault. Shaming us into losing weight. Telling us that it is the only option when it is not.
I want to be honest, though. Our eating habits were already leaning this way, but now we are following a pescatarian diet. And the damn side effects of the Diamox make it so I can only eat fresh foods – anything processed or fried tastes horrific. I read a research article (that now I cannot find) from the 1990s and the author was happy that the Diamox causes nausea and GI disturbances, and they even mention how the fact that it makes carbonated beverages taste awful will help the obese patients lose weight. Because you know, we all just sit around drinking soda all day. But that author was correct, I have lost 12 pounds since diagnosis – it could be from the diarrhea or the diet changes, but it is happening.
This whole deal taught me that my superpower of making too much cerebrospinal fluid is both a good and very bad thing. The bad, we know, obviously. The good though, is that I have made new friends with this same disorder. I have learned how a community of folks that are suffering are stronger when they work together. I have also learned that I am ashamed of the medical community and hope to be back to work soon and I can start changing it from the inside. And lastly, I have learned that speaking about IIH and all of its mysteries and misinformation is helping others, and that makes me feel like a dang superhero.