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.
Feeling like shit today. Woke up after sleeping 10-11 hours, ate breakfast, and then went to take a nap for another couple of hours. So, why am I so exhausted and feeling like I got run over by a steamroller?
Well, yesterday my husband was driving home from work when a tire fell off his car. I had to go pick him up and once I got there, we had to wait for the tow truck to come get the broken down car. It was supposed to be about an hour before the tow truck arrived, instead it was almost three hours. Three hours of sitting in the cold (we did turn on the heat in my car occasionally, but didn’t want to run it the entire time we were waiting). Three hours of sitting in a position that is not good for my back, neck, and joints. Three hours of my joints stiffening due to the cold and being cramped in the car.
I knew today I would feel rough after all that and expected my CFS/ME and Ehlers Danlos to flare up. As usual, I was correct, but I wish I wasn’t. Those who don’t have chronic illness and chronic pain have no idea how easy it is for normal, annoying life events to set us back for days. I think it is something you have to experience to truly understand.
I’m still struggling with bad neck pain. Yesterday it felt a little bit better, so I figured I would try to get out of the house for the first time in a while (other than ER visits). Unfortunately, once I got in the car, the vibrations from the car itself and the movement from driving kicked the pain back into high gear. I did at least make it to Wendy’s so my husband and I could get some dinner, but then it was straight back home because I was in too much pain to do anything else.
Honestly, after two weeks of these headaches and severe neck pain, I’m starting to worry this might be a long-term problem, just like my right shoulder blade and the arches of my feet. I’ve been incredibly depressed the last few days, partly because of the pain itself, partly because I can’t do much of anything, and lastly because I worry if my body continues to deteriorate at the rate it seems to be going, I may eventually become completely home-bound. I believe that all these chronic pain issues are mostly related to my Ehlers Danlos Syndrome, which sucks even more because there is no cure for connective tissue disorders 😦
I’m feeling pretty down in the dumps as I am still struggling with migraines and neck pain, but thought I would share some cheerful art in an attempt to cheer myself up as well as anyone else who needs a lift. The following two ACEO (artist trading card) collages feature cute kitty puffy stickers that I received for Christmas stocking stuffers:
Visit my Ebay store to see all my art currently for sale!
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.
I am currently a high-strung mess. As my SSDI hearing looms nearer and nearer, I find myself obsessing way too much over it and almost panicking about the fact that I feel powerless over what will happen in the end. I am trying to do absolutely everything I can think of to prepare for it and make sure we have good medical documentation especially, but that in itself is stressing me out because it means having to be assertive and ask for things from my physicians which I despise having to do. I HATE having to ask ANYONE for ANYTHING. It is just the way I am, but sometimes you have to do the things you hate…
I do not do well when I feel like I am not in control of a situation. My anxiety can’t handle the uncertainty and the endless waiting. I would almost rather deal with the worst case scenario immediately rather than be in limbo for months waiting for someone else to decide my fate. On top of that, I feel like I am annoying those around me (lawyer office employees, doctors, my poor husband) because of my intense anxiety state. I talked to a paralegal today and she told me to take a deep breath and relax lol. If only I could! I can do the deep breath, but the relaxing part just ain’t kicking in.
The heightened stress is taking a physical toll too, as it always does. My upper back/shoulder/neck area is flaring again to the point that I am regularly rolling on Lidocaine and had to take some Tramadol. The pain is so bad I can’t do any household tasks, which makes me feel bad too. Even typing this is painful and requires frequent breaks.
Now I feel like my whining is probably annoying all of you too lol. Sorry if that is the case, but I just needed to vent!
Well, I found out yesterday that as well as having degenerative disc disease throughout my cervical and thoracic spine, I also have a bulging disc that is pressing on the nerves surrounding it and likely causing most of the excruciating upper back pain I have been experiencing for several years now. The doctor wants me to do traction therapy and then see pain management for injections and other pain modalities that might help. I’m pretty bummed about it.
On one hand, I am thankful they aren’t pushing for surgery yet, but on the other hand I know the doctor isn’t ruling it out and that kind of scares me. I know for some people traction works wonders, but for others it doesn’t. I hope it helps me. Anything that keeps me from having to be eventually sliced open is a good thing in my opinion. I figured I would share this information with an old drawing I did years ago entitled “Crick in the Neck” (pictured above). I figured it fit the subject matter well, and it was always one of my favorite drawings I’ve done. If the treatments do help the pain, it would be really good for my art and my writing, as both are hard to do when my back is acting up (since the pain shoots down into my arms as well).