Nothing really exciting today, just a long update on "my condition." As some of you know, I felt great in the first two weeks of the month and stopped taking my iron supplements for my anemia and started exercising. Then I started feeling crummier and crummier last week. I was in pain (had to take vicodin for the first time since way back in October) and my vision was messed up and I was crying constantly, at the drop of a hat, worried about anything and everything.
I've been doing research online (always a double-edged sword) and joined an online support group for people with my condition (known by various names, including benign intracranial hypertension [BIH], pseudotumor cerebri [PTC], or idiopathic intracranial hypertension [IIH]). The time was particularly challenging emotionally because the greatest of the pain hit me on the weekend, when, of course, I knew it would be pointless to call my docs. So, some of you got to read lovely emotional emails from me, and some of you got to hear me nearly bawl on the phone, and some of you were spared it all together. Below is the medical summary of today, a very exhausting day. (By the way, you are included in the "contacts" I mention below. If you have any ideas or suggestions, as always, as in the summer, I'd love to hear them, and I thank you all for all that you do to make this world a better place for me and others.):
Well, today was a mixed bag of information. I still hadn’t heard from Dr. Hilburn (the neurologist) or his acting nurse about my concerns, even though I called early Monday morning, so I called this morning before 9 and left another message for her, asking for a call.
Then we were off to Indianapolis for my visit with Dr. Rieser, who hadn’t been kept updated on any of the recent activity in my life. So my visit with him was me bringing him up to speed on our conception and everything since then. He said he has “a couple” other patients with IIH, so he knows something of the disease, but he’s not up to date on everything about it. He thinks it’s great I’m doing my research and staying informed. He thinks the iron-deficiency anemia could be related, but he’s not sure about causality with the recent headaches. He said the iron count of 13 (what Mike remembers my iron count being last time it was taken at St. Vincent’s in October) is good and that he doesn’t think me taking supplements will make me overdose and produce too much, but it is possible that I was a little low when I started getting the headache flare-ups not long after my period AND starting the exercise again. He thinks the exercise may be the culprit. He suggested a book (Eating for Life) to me by an exercise physiologist, saying he’s had several patients (with IIH?) have good luck with it, losing weight this way. He suggests I “bag the exercise for now,” particularly the strenuous stuff, and try to lose weight through controlling food alone right now. Then maybe I can add exercise in later.
My overall impression is that, as always, Dr. Rieser is great. He said several times that I am really the best person to know what’s unusual for me and what’s not and to tell them (the doctor’s) what I think is going on. Of course, it’s their job to interpret, but he DOES listen AND consider, rather than just tossing everything out. He tells me WHY he thinks an idea doesn’t hold up or why it does, for that matter. So, maybe I’ll keep him as my primary care physician, after all, even though he is so far away.
I really don’t like the idea of not exercising. I think the exercising is what was really helping me lose weight, but I could be wrong. I do respect Dr. Rieser and his opinions, so I’ll give it a shot, after all. He said that he thought with the exercise, I was “setting myself up for a big fat failure,” in exercising, then having pain and not exercising because of the pain, etc. , even though weight is often an issue with the patients with IIH and they need to lose weight. That’s why he recommends this way of eating to most of them. He also asked what the other docs had said about conceiving and asked if I knew about the dangers of the other drugs I’m on in pregnancy. I said yes and explained that Dr. Hilburn had said that conception was okay and that, of course, the biggest concern would be for my health. And I told Dr. Rieser that I, of course, am scared of getting pregnant, primarily for my vision, though I do still want to have a baby. I teared up, and looked down and started writing, so Dr. Rieser filled in the gap by answering that he did think it was a good idea to wait 9 months to a year to get this IIH stabilized before we started thinking about conceiving. According to him, we’re “still young and healthy,” so that’s not a concern. I told him about my quest to find out more about women who’ve had pregnancies with IIH, especially after having the vision issues I’ve had, and he again said he thinks it’s great I’m keeping up on everything and that I can call anytime I have questions; if he can help, he will.
The visit with Dr. Lee was a little more mixed. There is no fluid on my optic nerves, so any vision issues I’ve had are not cause for more concern YET. My vision in my left eye is still 20/20, in my right eye, still 20/40. On this visit, I was given a color test, which I haven’t been given before. I got to try to pick out numbers formed from clusters of circles of various shades of one or two colors set against circles of other colors. I got 5/14 on my right eye and 14/14 in my left, although that was still a challenge. He says there is some pallor in my right optic disc, which we knew. That’s leftover from the optic nerve basically being oxygen deprived when the pressure cut off so much of the circulation to my eyes. That’s the eye, of course, that has far more problems than the other, visually.
Dr. Lee is concerned that my neurologist has said he doesn’t need to see me any longer unless I feel I need to be seen. He (Dr. Lee) thinks the neurologist should see me at least twice a year, to keep an eye on my progress, because the optic nerve sheath fenestration has “not great permanent results,” so we really have to keep an eye on my condition. He said he would far rather see me come in 10 times a month out of paranoia than not come in that one time that it really mattered. It’s funny, at first, Dr. Lee seemed really hard to get information out of, a little brusque, but now he seems to open up more and more every time we see him.
I had heard and read, of course, about ONSF “failing” but had not managed to find information, so we asked him about the rate, and he said that he would estimate it at greater than 50%. He said it’s basically a band-aid. Really, the point is to try to control pressure with medicines, weight loss, maybe even shunting (though that has its own failure rates in some patients), and that’s why the condition needs to be monitored, especially the cranial pressure. Anyway, when the ONSF “fails,” what happens is that the hole “plugs” back up when the pressure in the head goes back down, and then, if the pressure rises again, the hole has resealed with scar tissue and so there is no longer anywhere for the pressure to vent again, so you therefore have the need for a repeated procedure or for shunts.
Of course, I’ve been kicking around the idea for a while that Dr. Hilburn is a nice guy but just doesn’t seem to know much about IIH and isn’t the best doctor to manage my care for this, so when Dr. Lee again expressed his concern about this lack of observation, I asked Dr. Lee if, based on his experience of doing ONSF procedures, he knew of any neurologists he could refer me to. He said absolutely. I said of course, the problem is that I’m self-pay. Well, that made things a lot more difficult. Because we don’t live in Marion County, we can’t go to Wishart, which is always the first response. So he’s down to ONE person he can refer me to. One. She has a private practice but volunteers some of her time at IU Med School. He thinks she might be able to take me on there, but it might be a long wait before she can get me in. He dictated a letter to her while we were there, asking her if she could take us on, and then told me to give her a call in a week or two. This doctor is a neuro-ophthalmologist, so she can monitor both the IIH and the vision issues. That’s fantastic. When he mentioned that, it reminded me of information I’d found a few days ago about a neuro-opthalmologist up in Lafayette, Scott Sanders. He’s heard of Dr. Sanders, but only by name. He doesn’t know about his reputation at all. Neither do I, unfortunately…I can’t find anything on the man’s reputation.
Dr. Lee is concerned that, of course, we will have a harder time finding quality care for me because I am a self-pay patient, as we see with the immediate reduction in the number of specialists willing to see me). He told us that he recommend I get health insurance. (Gee, thanks, Doc, we hadn’t already thought of that!) It’s a very expensive disorder I have, and it’s going to cost a lot to monitor. He suggested Medicaid; I make too much money, I explained. He said apply, reapply, and reapply again. (I will, but I don’t think it will do any good.) He suggested getting individual insurance; I already tried and weighed too much, and now I have a preexisting condition, I explained. Mike said basically, our only hope is for him to get a job that would provide insurance to me despite my preexisting condition. Dr. Lee said something like, “There ya go,” or “Do what you have to,” and I responded that Mike has been unemployed and looking for a job for nearly a year now, it’s not so easy.
One last thing, Dr. Lee said, we might consider, is disability. We MIGHT be able to get it for blindness based on my visual field limitation in my right eye. But, he said, if I ever want to drive, I couldn’t do it, because to get disability based on blindness assumes permanent blindness so I would never be able to get a driver’s license, and if I ever tried to reapply for one, the government would come looking at my history and why I was suddenly “not blind” anymore. I also pointed out that if I’m getting disability payments, I can’t earn much money. He said it might be worth it to “be healthy.” I replied that it wouldn’t be worth it if we couldn’t afford to pay for food, clothing, or shelter, so our overall health would suffer. (Besides, I’m not so sure that a lot of people on disability have access to better care than I would, just because they have more options available.) Mike and I are still pretty sure that, despite the high cost of everything, given all our options, we’re still better off with me working as much as possible and remaining uninsured (though TRYING to find insurance) and paying for things out of pocket, making payments as/if necessary than any of the other options so far presented.
I’m still researching, using my contacts, the support group, every connection I can think of. I’m crossing my fingers. Dr. Lee even went so far as to suggest that perhaps everything I experienced was just a perfect storm with the hormone fluctuations from the miscarriage, my weight, etc., and that maybe now my body is back in its normal place and isn’t making excess CSF any longer and it’s the diamox and topomax giving me the headaches. I’m not sure I’d go that far yet, though it’s a nice thought.
And finally, on our way home from all of this, I heard back from the neurologist’s acting nurse. She said she had been waiting for a response from him to her email. He said:
-He is not aware of Topomax causing depression or anxiety but knows that anticonvulsants (which Topomax is) in general can cause them. (The information about depression and anxiety in relation to topomax was a brand-new insert with my topomax prescription starting in December, so it stands to reason that he wouldn’t necessarily know about it yet.)
-He doesn’t think stopping the iron supplement would cause the headaches but that the depressed and anxious feelings could.
-I was on the topomax to control the IIH headaches, but I may not need that anymore.
-He wants me to cut the topomax dose by half (either cut the pill in half at morning and evening OR take only 1 dose per day), and if that doesn’t help the anxious and depressed feelings after 4 days and I’m still concerned, I should call back, and we can try another medication.
So, of course, it is entirely possibly that it is my condition, and not the medicine, causing the depressed and anxious feelings, but I’d like to see how this goes. Perhaps I’ll notice a difference in some way, either in pain (increased or decreased) or in anxious feelings.
So, now we’re back with a clean slate. Tonight, I’ll take my medicines as I’ve been taking them. I’ll probably eliminate tomorrow night’s topomax dose. I’ll stop doing strenuous exercise, and just walk or use the lighter exercises on the WiiFit (rather than the more strenuous EA Sport Active exercises that I was doing). That way, I’m back to where I was at the beginning of the month, when I was feeling so good and better, and the only change with be the topomax. (I sure don’t like being on the verge of tears all the time. I can be perfectly fine one second, then one little thought or word can just make me nearly break down, and that drives me nuts. I hate not being able to hold myself together a little better than that. I’d sure like to find out that’s caused by a medication rather than this condition, because that’s probably the thing that’s making it hardest for me to cope with everything right now, I think....I feel like my coping abilities are just derailed.)