Be Your Own Advocate

Disclaimer – I realize this is long and it is probably the most personal blog entry I have ever written. It took a lot of courage for me to finally decide to talk about what has been going with me so openly like this. Please only read it if you plan to read through the entire entry. I do not want people gleaning only certain details from it and making unfair assumptions. Thank you.

Last week when I posted about the family being sick, I was not being completely honest about everything that was going on. So here is what has been going on with me:

I have suffered from migraines since I was about 17. In 1994 I finally found relief in the drug Imitrex but because I needed to take it more frequently than doctors and insurance companies would like, I was evaluated by a neurologist to find a preventative medication to stop the migraines from occurring in this first place. After 3 drugs that either didn’t help or had horrific side effects, the experimenting was aborted as I prepared to get pregnant and start a family.

Last winter, after Jadyn was completely weaned I started working with a new neurologist to find a solution to my frequent migraines. It was then that I first started Topamax, an anti-seizure drug that is also prescribed for migraine prevention, bi-polar disorder and anxiety. This is the first drug that significantly reduced my migraines but the side effects were numerous. Since I felt I still had other options, I discontinued the Topamax and experimented with several other therapies that did not have a good result. Therefore, in September I decided to give Topamax another shot, hoping I could get over the initial side effects and finally gain some relief. Well one of the side effects of Topamax is that it exacerbates allergies, so I was forced to add Claritin to my daily regimen. In mid-October I developed conjunctivitis in my left eye from the allergic symptoms I had been experiencing and was prescribed an eye drop to clear up the infection. Related or not, it was during this time that I began experiencing intense swelling and feelings of pressure around my left eye and because of the potentially dangerous side effect of Topamax causing glaucoma, I was rushed for an comprehensive eye exam, which thankfully was unremarkable except for the discovery that my left eyelid was droopy, a condition called ptosis. This led to a return trip to my neurologist where it was decided that due to the pressure feeling my eye, I needed to discontinue the Topamax and obtain an MRI to make sure nothing in my brain was causing both the pressure and the droopy eyelid.
This was November 3rd.

Things slowly spiraled downward from there. First of all it turns out that unilateral ptosis can be a sign of numerous serious medical conditions including undiagnosed stroke, aneurysm, lung cancer, brain tumor, multiple sclerosis, myasthenia gravis, Horner’s syndrome and thyroid dysfunction. While waiting the week it took to get insurance approval for the MRI, my mind started to jump to worst case scenarios and I became understandably anxious. It was during this time that the kids also developed the flu so right along with them, I began experiencing flu symptoms as well. CT scan, MRI and initial blood work all came back negative ruling out most of the major serious causes of the droopy eyelid and I saw a neuro-opthamologist who ruled out most of the other neurological causes and deemed my eyes healthy. With the Topamax out of my system, the pressure behind my eye started to subside, although I am still experiencing some symptoms from the droopy eyelid because it is not able to do its job correctly and it gets tired throughout the day.

I thought I felt a lot better, at least from the perspective that nothing was majorly wrong with me. I admit to feeling very self-conscious about the asymmetric appearance of my eyes. In reality, I have told very few people because I think if you are not looking for it, you probably wouldn’t even notice it but obviously it bothers me. I can feel it constantly, although I am getting a little more used to it and I imagine that it looks much worse than it really does. In fact, this condition could have been going on for quite some time and only recognized because my left eye was bothering me and the truth of the matter, it is something that I am still coming to terms with that we may never know what caused it in the first place. My neurologist explained that migraine suffers are more prone to abnormalities like this because we have a dysfunctional trigeminal nerve.

But here is the worst part – As last week progressed, the kids recovered from the flu and I continued to remain very sick. Although I had only thrown up for one day, I had persistent chills, body aches, weakness, fatigue, diarrhea and lack of appetite. I had lost 5 pounds in 1 week. On Sunday, which was now day 9 of my flu symptoms, I went to the emergency room where additional tests showed no infection. At this point, some of you may realize where this is headed but I was still clueless.

As recommended on Monday I followed up with my primary care doctor and neurologist where I basically broke down in frustration at everything that was going on. Why was still so sick? I just wanted to feel better! It was between these two visits that I discovered that since Topamax is used to treat anxiety, going off of it can cause anxiety even if that was not the initial reason for its use. Although the doctors dismissed all the physical symptoms I was having as being related to the anxiety, they agreed I needed something to calm my nerves from everything that had been going on and prescribed me some Xanax. Ever since the Topamax, I have been very leery of taking any medication, even the Imitrex I have taken for years, but at this point I was willing to try anything to help me feel better. This is not something that is easy for me to admit. At the same time, guess what? After taking the Xanax I feel like a completely new woman with very few of the physical symptoms of the flu. It turns out, I was having extreme anxiety from the combination of finding a cause for my droopy eyelid and going off the Topamax. My neurologist is confident that over time, the anxiety will diminish although if it persists much longer, I will have to take a different medication that is meant to treat chronic anxiety. While I am completely appalled that a drug I took to treat my migraines has had such an adverse affect on my mental health, the truth I am just elated to finally be feeling better.

And as for the droopy eyelid, I am coming to terms with it. After worrying for the last few weeks that I had a serious or life-threatening illness, I am willing to deal with something that is only cosmetic in nature. That said, I do have to go for a second opinion with another neuro-opthamologist, have a few more blood tests and then consult with an oculo-plastic surgeon, but anything they find would not be serious or life-threatening at this point and the very worst case scenario is that I may be medically eligible to undergo corrective surgery to fix the eyelid but I have not decided if that is something I wish to pursue. A lot of that decision may be based on how symptomatic my eye is, should it continue to bother me throughout the day. Surgery is not something I would take lightly.

So where do I go from here? Well first of all you may have noticed that I was posting a lot less pictures of me and the kids. I have been very self-conscious about what has been going on and only now do I realize that it is precisely why I had disliked the last few pictures I had of myself. I am trying to get over this but it is not something that is going to happen over night. Secondly, one of the reasons that I decided to post this blog entry is in the hopes that I might be able to help someone else. I know all drugs have side effects, some of them very serious but I do not feel that I was properly warned about all the possible side effects of Topamax. Nowhere in my research does it claim that it can cause anxiety like I experienced from discontinuing it and I did properly wean off of it. Certainly, in my case it was a combination of factors because I did not have this problem when I discontinued it the first time but that is neither here nor there. I don’t even want to blame my neurologist because he has been nothing but helpful and understanding throughout this entire process. Thirdly, I really had to be my own advocate throughout this entire process, researching certain things and asking about certain tests. I know I appeared to be a nuisance to my doctors and spent unnecessary money with the trips to the emergency room, but I was not going to back down until I was satisfied with the answers. I finally asked about anxiety both in the emergency room and to my primary doctor and even though my doctor did finally prescribe me something, they were all too eager to dismiss the possibility that a majority of my symptoms were being caused by it. I shutter to think how long this could have continued if I did not finally come to the conclusion ON MY OWN that anxiety could be the culprit. No doubt at some point last week I did have the flu but what else would explain the dramatic change in my condition from yesterday? It was not until I talked to a friend who had gone through a similar experience that I was even willing to accept the possibility that anxiety was the cause of my prolonged illness so I know I am not alone and maybe my story can do the same for someone else. Because I do not wish the last few weeks on anybody and right now my only desire is to get back to enjoying my life and my family.