I am one who keeps track of things. It's in my nature. I have a planner (where I write more things down after the fact than I do beforehand), and a journal, and facebook, Instagram, and this blog. All of which serve me well in keeping track of dates, and things that happened, and my feelings, and, as it so happens now, my pain journey. It's part of who I am. So, it comes as no surprise that I know when my pain started. And the anniversary of that time is this week. Three years.
Actually, it's funny because I don't have the "actual date" the pain started, because it started as an ear ache/jaw pain that I thought might be an ear infection or a tooth problem. But I have the dates of my first Dr appts (Aug 3 I saw my dentist and Aug 9 I saw my reg Dr). And I made a note in my planner on one day that I had had the ear pain for about 4 weeks at that point, which backtracks to this week. So, yeah. Happy Anniversary to me. Worst anniversary date ever.
But in recognition of this, I thought I'd do a few little updates and blog posts that have been in my brain for a really long time.
First of all, how things stand now: Well. Hmm. Let's go back a bit. In November I had the 22 day migraine when my current neurologist refused to give me any help to abort it ("just keep taking what you're on" she said). That wasn't acceptable to me, since I'd already been to the urgent care and ER in desperation for the pain. Not offering me any help to get rid of this pain was not an option. I needed a new plan. And fast. This led me to rallying all my sources to find new Drs or ideas. In Dec I started seeing an integrative medicine Dr who I was told was good at helping migraines and getting to the root of problems. I saw a chiropractor (who honestly scared me so much with his technique, I almost cried, and he asked me if I was ok.... I wasn't really a fan of that - and although I scheduled a whole month of follow-ups, in the madness of Dec, I cancelled all of them and never went back). And I found a new neurologist.
The integrative medicine Dr did a bunch of blood work that led me to a few ideas to try. I started supplementing Vit D, because my levels were very low. I tried a progesterone supplement, just because he said a lot of women feel better with a little more, even though my levels were ok (this may have contributed to the breast discharge problem that I subsequently had, although I've been off of it ever since and still having that other problem. So whatever. Who knows, but I won't take the progesterone anymore just in case.) And my blood work showed IgG sensitivities to milk, wheat, eggs and gluten. I also tested high for an inflammation marker. So, I went off of all of those foods. The hope was that by avoiding the things that my body was sensitive to, it might reduce inflammation in all of my body, which might be contributing to my pain, or depression, or energy levels, or something. Ok. So we tried it.
My new neurologist was a headache and sleep specialist and had also given me a low-tyramine migraine diet to try. So, that's when I went off of just about every tasty food on the planet (between the migraine diet and the IgG sensitivity foods I was avoiding). This was not a good time. I was lethargic, depressed, and basically slept all day and stopped eating. I didn't have the energy to find things that I could eat and I just didn't feel like bothering with any of it. Plus my pain was terrible. Pain can also be exacerbated by emotions too, so it's just a terrible cycle. It's impossible to tease out all the cause and effects, but I sure didn't feel any better.
In Jan, I also had an overnight sleep study done to rule out apnea, ordered by my new neurologist. I barely slept at all that night, but somehow they collected enough data to still consider it effective. And I got the report and it basically said I DO NOT HAVE SLEEP APNEA. There is a rating score they use to differentiate between normal breathing, mild apnea, moderate apnea, and severe. I was in the normal range. But, the neuro still thought that apnea might be a cause (huh?!?) and that I should try a CPAP machine. Well, the machines are costly and not easy to sleep with, so I held off on that.
He recommended that I try Botox for the chronic migraine. It would take up to 4 treatments, 3 months apart, to know the full effect of how effective Botox would be for me. Everyone has a different response to it. Some people it helps right away, either with intensity or frequency of migraines, some people have an accumulative effect where they get more benefit with each treatment, and some people it doesn't help at all, or even makes them worse. He said it wasn't very painful, most people were fine, and that I wouldn't need the numbing cream that a lot of Drs use for it. LIES. hahah. It was terrible!! Probably the worst medical procedure I can ever recall since the terrible nerve block experience. I sobbed. He asked me if I was ok, and I said no not really. But what else could he do? The injection sites stung and ached and throbbed for weeks. This isn't a typical response. I had more migraine pain in those areas, when previously I didn't have any pain at all there. And my eyebrows became paralyzed - for the entire 3 months that the injection was "working". Oh and the best part?! He had told me there were NO SIDE EFFECTS. Riiiiiiigght. Of course I knew from my own research about all the possible side effects beforehand, but I was ticked that he said there weren't any, and I had decided it was worth at least a try to see if it would help me. I wasn't happy about any of this, and had decided there was no way I could do it again. Just. couldn't. Not worth it.
Sometime in all of this, I was also dealing with breast pain and discharge and having to undergo mammograms, ultrasounds and a ductogram, all of which were not very pleasant.
And the neuro had sent me to a neurotologist (kind of an ENT neuro), and an ophthalmologist. The neurotologist said I most likely had Menieres disease, due to some strange sound distortions I had had occasionally and very rare vertigo episodes years before, and I had very mild hearing loss. But my ear pain, he said, was most likely a nerve issue that the neurologist should help me with. Great. The ophthalmologist said I had very dry eyes and that could cause eye pain. Hmmm. He said I should do drops every couple hrs. But I kind of don't think my dry eyes could be causing the exploding type of eye pain that I experience. I cancelled my follow up there.
So, anyway... the neuro had me try a medicine to rule out Hemicrania Continua, a headache disorder that causes one sided head pain. The med caused half of my soft palate and throat to swell, making me gag, an allergic reaction. I saw a different Dr on short notice who told me I should stop taking it, of course, and prescribed a short term steroid. The steroid seemed to actually help my pain a little, but you usually can't stay on steroids long term. Interesting though.
The neurologist had also tried me on a couple different prescription NSAIDS, a beta-blocker, nausea med, and ear medicine, none of which really helped. He also gave me anxiety meds and a muscle relaxer, which I could take when the pain was bad just to help me zone out and not freak out. Also to help me sleep. That was probably the most help he ever gave me. After a few months being gluten-and-everything-else-free, I went back to the integrative medicine Dr for follow up. My Vit D levels had improved, the inflammation marker was down, and the IgG sensitivities were down but still not normal. Since he wasn't on my insurance and I was paying $200 a visit, we determined that I couldn't afford to keep seeing him. So he recommended I keep off the foods for a couple more months and if I still didn't see any improvement in anything, then it probably wasn't worth staying off the foods (hallelujah). Oh, somewhere in there I also tried taking a thyroid supplement. My levels were on the low side of normal. But I never noticed a difference being on that either, so I stopped. Didn't notice a bit of difference in my pain levels going back to eating normal food, but I did unfortunately gain back the weight I had lost when I wasn't eating. No surprise there.
And then, my neuro kept pushing me to get the CPAP. I explained my concerns in getting it (the cost - $400 out of pocket after our deductible has been met, the possibility of a face mask aggravating my face pain, the fact that I DON'T ACTUALLY HAVE SLEEP APNEA), but he was still very insistent that trying this might help me. He was also very disappointed that I wasn't willing to give Botox another try. Then he tried to tell me that maybe all of my pain was actually stemming from my depression, so he referred me to both a psychiatrist and a neuropsychologist. Hm. I knew my depression had been pretty bad so I felt ok about taking the referrals, since I clearly needed more help than he could give me. But I really didn't like that he wanted to attribute all my pain to my depression. Seriously.
I was seeing a counselor when my pain started and asked him about this, as this is often a question that comes up with chronic pain, and he very clearly explained to me that when pain is associated with depression it most often manifests itself in more vague ways: a dull headache, backache, stomachaches, etc. It doesn't usually follow the pattern of a specific disorder, like Trigeminal Neuralgia. So he didn't think that was causing anything. They might be feeding off each other, as emotion plays a very significant role in the perception of pain, but that would be the extent of it. Many many people with chronic pain get this kind of thing from Drs, mostly when the Dr has run out of ideas and is feeling out of their element. They don't know what else to do, this makes them feel incompetent, and they then blame it on psychology. Most people with pain feel invalidated, accused, and discouraged in this situation. I am not an exception. This, along with his insistence on Botox and CPAP (notably, his areas of expertise), convinced me that I was done with this Dr. He had nothing else in his tricks of the trade to offer me. He didn't know what else to do.
I saw the psychiatrist, who tried me on another anticonvulsant I hadn't tried yet. I had a potentially life threatening reaction, which sent me to the ER. She wanted me to try some antipsychotics to help with my sleep, mostly. I didn't feel good about that. She agreed that getting off the migraine preventative med (also an anticonvulsant) made sense, since I'd been on it for over a year and never felt like it helped at all. The neuro kept telling me my pain would probably be worse without it and didn't recommend getting off. But I followed the psychiatrist's recommended tapering schedule and now I'm off, with no change in my pain, either better or worse. She also increased my antidepressant, but then I started having high blood pressure which can happen from this medication. I had my blood pressure taken in different places and situations (even knocked out in the ER) and it was always high. So, since it was no longer working much for me, it could be causing me high blood pressure (which can happen at any dose), and there's always the slight possibility that my pain could have been caused by it (who knows), we decided to start weaning off of that too. That is a very long slow tapering process, since it is known for having nasty side effects getting of it (one of the worst for antidepressants). The entire process would take a few months, and I'm still in the midst of that. But she told me to call her anytime I'm feeling desperate, or have questions or anything and she seemed like she really wanted to find something to help, and that was encouraging.
I also went and saw the psychologist. She works closely with the neurologist, he referring patients to her, and she likewise. I was nervous about what he might have told her about me, with my stubbornness in refusing the CPAP and Botox, and how he thought my pain was caused by my depression, so perhaps I was a little defensive from the start. I didn't feel comfortable with how my information might be passed back and forth between them and I wasn't sure how it would work, since I had already come to the conclusion that the neuro had basically given up on helping me (our last visit, he told me to come back when I wanted to try the CPAP. Ummm, ok...). And there is also an element of rapport and feeling like someone is on your side. Like someone is listening and genuinely cares about YOUR experience. Having seen a number of psychologists/psychiatrists/counselors before, either for myself or my children, I kind of know how this works and how important this aspect is. Sometimes you just need someone you "click with" for it to work (also important with Drs, incidentally). But this lady.... she seemed kind, and she went through the stack of paperwork I had filled out and asked some relevant questions, but then she just went on and on about some pain she had (nothing at all like mine) and what had helped her, or her sister, or somebody, and have I tried essential oils, or acupuncture....? And I was taken aback a bit. During the visit, I just explained that yes I've tried oils and no I haven't tried acupuncture, but that I've tried a whole dang lot of things, and I was exhausted. My Dr had just basically given up on me. I had seen 22 Drs and health providers of different sorts over the last 2 1/2 yrs (to which she said, why do you think you've seen so many Drs?? in a tone that felt accusatory to me, like I'm just Dr shopping to find one that tells me what I want to hear. I felt I had to defend myself against my choices - not really how I want to spend my time). I've already heard about just about every treatment available, I have been through a lot of crap, and really, can someone just listen to me for once???? I paid $75 to see this woman, I was paying her (I thought) to listen to me, because if a psychologist won't listen to you, then tell me, who will?!?! But I didn't feel like she was listening. She didn't bother to ask me what treatments I had tried, before going on about her own things that helped her, and she hadn't even asked me about my pain enough to even understand it. How could she know what could help me if she hadn't even talked to me about what it was like? She recommended a book about managing chronic pain (which I now have from the library) and suggested I take an online inventory assessment-thing that would help me clarify my strengths and values, which she said is important to remember during pain. I did it, which I found fascinating but not particularly helpful or relevant to what I'm going through. I went back to her again, and we talked a little, but it was clear this wasn't a good fit. If nothing else, I need someone not so closely connected to the neurologist that was driving me crazy. We mutually agreed that I probably shouldn't continue coming back. So that was that.
So that's where I am. I've started getting these terrible insomnia episodes (where I sometimes never fall asleep at all, all night long) that don't make a lot of sense to me. I've never struggled like this before. I don't know if it has anything to do with the medications I'm getting off of, or just my general anxiety levels, or my pain, or what. My pain seems about the same as it's always been, although it's really hard to evaluate that objectively. I sometimes don't get out of bed much for days at a time. I don't have a Dr to see currently. I'm just kind of in a holding pattern until I get off the antidepressant and then evaluate how I feel. There was also a very slight possibility that it could be contributing to the breast problem. So I'm waiting to do anything else about that (since it is ongoing) until I'm off of this too. It all just really stinks. Sometimes I am doing ok, sometimes I am just not.
And for three years now, that's how it's been. Every single day. Happy Anniversary.