Yesterday I saw my new neurologist for the first time to try to figure out why I am suddenly having so many migraines. I must say the visit didn’t start out well. For one thing, they only see new patients first thing in the morning, and I am NOT a morning person. However, I did make it there on time at 9am in the morning, but then I ended up waiting to see the doctor until after 11am!!! Needless to say, I was not a happy camper.
The doctor seemed rather grumpy when he finally came in too. Maybe he was having a bad morning (I would think so with being that behind schedule for a specialist), but after waiting two hours, dealing with a grumpy doctor was not ideal. I will say that even though he was a bit grumpy, he was thorough at least. He asked tons of questions and investigated all the leads I could provide, even bothering to request additional medical records and taking a second look at my imaging tests that have already been done.
By the end of the visit, he had decided to send me for an EEG to check for possible mini strokes or seizures, and another head/neck MRI to see if my cervical issues have worsened in the past two years or if anything else has changed. He also wants me to be tested for Meniere’s disease, an inner ear disorder that may be contributing to my vertigo, ear pain/pressure, and tinnitus.
He noted that my neck was constantly spasming, so he switched me to another muscle relaxer and also put me on Topamax to try to help prevent the migraines (we are hoping it might help my fibro pain some too). I guess we’ll see how it goes from there.
I’m still struggling with migraines, but am starting to think that they might actually be cervicogenic headaches (caused by issues in the neck). The last few days, the left side of my neck has been visibly swollen and extremely tight, causing a great deal of pain. I can’t help but notice that the worse the neck pain is, the worse the headaches, nausea, dizziness, and fatigue become as well.
One person on Facebook who also suffers from Ehlers Danlos even suggested that perhaps the migraines may be due to a chiari malformation or craniocervical instability, which are both common issues associated with Ehlers Danlos Syndrome. I have wondered about the neck instability possibility, as I often feel like my head is excessively heavy, not supported well by my neck, and sometimes bobbles around almost like a bobblehead. Whenever I sit for long, I have to have a neck rest because my pain worsens quickly if I have to hold my head up without support.
Unfortunately, it looks like if instability is the issue, the answer might be this huge, horribly-uncomfortable-looking neck brace that looks like it would be sensory hell for me. Of course, I do know from a prior MRI that I also have degenerative disc disease throughout my cervical and thoracic spine, and at least a couple herniated cervical discs. Whatever the issue, I wish it would clear up soon! This is miserable and I feel like I am living on NSAIDS, muscle relaxers, and Lidocaine right now.
This has undoubtedly been a rough week for me so far, but some good things have happened too. Here is a short run-down of the last few days:
Sunday and Monday, one of our pipes froze because of the freakishly cold weather so we had no water until that section thawed out. Luckily, it didn’t cause the pipes to burst or anything like that. My husband thinks he solved the issue by replacing the insulation around the pipe, but I guess we’ll find out the next time we all freeze.
Yesterday I had my appointment with the rheumatologist to get my Ehlers Danlos testing done. I’m officially a zebra! Right now my diagnosis is Hypermobile Ehlers Danlos, although I do plan to try to pursue genetic testing to make sure none of the other EDS genes are playing a part. The doctor also highly suspected I have POTS (postural orthostatic tachycardia syndrome), which would help explain my dizzy spells, vertigo, feeling faint, and maybe even a few episodes of passing out when I was younger. It sucks that there is no cure or really even further treatment other than what I’m already doing, but it is wonderful to have some answers that finally make sense!
Tuesday I made the mistake of posting in a Facebook chronic illness group about my surprise that a zoo we want to visit charges $25 for the use of a wheelchair for a couple hours. Soon I was accused of being entitled, expecting everyone else to pay for my disability, and even being too poor to go to the zoo if I couldn’t afford the extra charge. The attacks got to the point that it actually made me cry because it hurt my feelings so much. I wasn’t even saying that the zoo had no right to charge for use of their equipment, I was just questioning whether the price was a bit high for the time it would be used. Of course, then I heard that some zoos and theme parks charge way more, some even over $100 a day! I can’t help but feel personally that is taking advantage of the disabled. Maybe I’m wrong, but I still feel that way.
Last night all this stress took its toll on me. I had the worse migraine I have had in years. Luckily, I still had some migraine pills from the last time I filled the prescription which was several years ago. They were technically expired, but still did their job. Today I have that slight headachy, hung over feeling I always get after a severe migraine.