Yesterday I had my regular neurologist visit to follow up about my migraines and while there I was also diagnosed with Essential Tremor, a genetic condition that is often confused with Parkinson’s from the symptoms. It most commonly affects the hands, head, and voice, but can affect any body part. It can also affect balance, mood, and possibly memory.
My balance, hands and voice are already affected pretty bad at times which scares me since it can be a degenerative condition and it can eventually become hard to speak, eat, write, or in my case, make art, since I am an artist.
My tremors started out in both hands a few years ago and have definitely worsened. At first, I only noticed that I could never take a good picture because I couldn’t keep the camera steady enough to take one. It has worsened since then and affects more daily activities, such as writing, typing, pouring/drinking liquids, dropping almost everything, etc. I noticed the voice tremors starting probably a year or two after the hands.
My balance has noticeably worsened to the point that I often start to fall over while just walking around the house or even standing still. It isn’t unusual for my husband to push me back up as I start to fall over like the Leaning Tower of Pisa.
For a long time I tried to dismiss it because I didn’t want to think something might really be wrong. I tried to blame it on anxiety or weird medicine side effects. I am glad that I don’t have MS or Parkinson’s which I feared sometimes. What finally made me bring it up with the neurologist is that the geneticist I saw for my Ehlers Danlos testing a few months ago seemed concerned by how much my hands shook.
The last thing I want to do is take yet more prescription medicines, but I am considering it in hopes that it might slow down the progression and alleviate the symptoms a bit. The only bad thing is that all the meds they use to treat this condition can worsen my depression, so the neurologist wants me to get the ok from my psychiatrist before we decide on a med to try.
My migraine, neck, and back issues have been flaring up on and off ever since my bad MRI experience almost two weeks ago. I feel like I’m not getting anything done and am struggling to get the bare minimum of my daily routine done. All this has me feeling depressed and has killed my enthusiasm for the new book I started writing.
The logical side of me knows the pain will eventually subside, but while I am stuck in this misery it feels infinite and everlasting. Chronic pain wears you down, destroys creativity, and can stomp all over your goals – at least anything short term. I hope I’ll be back to normal someday soon.
First off, I want to thank the person who made a supportive donation to my blog through Paypal today! I believe this is the second donation I’ve received that way and I really appreciate the support! If you are interested in ways to support me, please check out the Support My Blog page on this website.
Also, I got some good news today that I don’t have to do the second part of the MRI that went disastrously last week. That is such a relief. I was afraid if I did the rest of the MRI it would just trigger another migraine. The MRI results I did receive were pretty good, with no seeming worsening of my cervical issues! Thank goodness!
I did have to visit the GI doctor today and found out I need to have an endoscopy, which I am nervous about, but I realize it is important if they are to find out why I am having such horrible bouts of esophageal pain and difficulty swallowing. At least I will be sedated for the procedure and hopefully won’t feel or be aware of what they do. My appointment for that test isn’t until next month, so at least I get a little break from medical tests.
Yesterday I saw my psychiatrist. We spent a lot of time talking about the dark, morbid interests I have and whether those might be contributing to my depression and anxiety. I’ve always been drawn to studying the dark side of things, whether it be the occult, serial killers, suicide, the dark side of history, horror movies and books, or psychopaths. I know these interests may not be the best things for my mental state, but they are all things that fascinate me and it is hard for me to resist things that fascinate me.
At one point in the conversation, my psychiatrist asked if there were any happy interests I have. I told him I love cartoons, but then I told him one of my favorite cartoon movies is Anastasia, which he pointed out is about the mass murder of the royal family lol, so maybe not so happy after all.
Today I have an MRI scheduled on my head and neck to try to figure out what might be causing my recent migraines. I’m really not looking forward to it. I hate MRI’s, especially on the head and neck because I feel really claustrophobic and hate not being able to move for so long.
Had my EEG yesterday morning. It wasn’t too bad. The flashing strobe light part was almost kind of like what I imagine doing psychedelic drugs would be like – all the swirling lights and patterns…it was kind of crazy. I was supposed to nap for like 15 minutes or so, but just couldn’t fall asleep. I’m hoping I won’t have to do the home sleep study, but I guess we’ll see what the doctor thinks. The gel they put on my hair to keep the electrodes connected drove me crazy, so I had to come right home and wash it out.
Other than that, not much exciting is going on. I am attempting to embrace a mostly gluten-free diet in hopes that it helps my digestive and chronic inflammatory issues, but it is hard because many of my favorite foods (pasta, pizza, bread, cereal, cookies, etc.) have to be eliminated or replaced with gluten-free substitutes which don’t always taste as good or have the same texture. As an autistic gal, food texture matters A LOT to me and it takes a good long while for me to get used to changes. Thank goodness a few mainstream cereals are already gluten free (like Cheerios, Lucky Charms, most Chex varieties, Fruity/Cocoa Pebbles, and a few more).
My mood today is rather blah. Just not feeling much of anything, except tired.
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.
Tomorrow morning is my SSDI hearing. I’m super anxious about it. I feel a little nauseated just thinking about it. I’m afraid I’ll do or say the wrong thing. I’m afraid I’ll burst into tears and feel embarrassed. I’m afraid I’ll somehow misrepresent my reality. I’m afraid the judge will say no and ruin my foreseeable future.
I know the judge probably won’t even give a straight “yes” or “no” answer tomorrow, but that makes it even worse because then I have to wait who-knows-how-long in suspense and worry. I hope I’ll feel better when it is over, but knowing me, I’ll probably spend the next few months picking apart the experience and everything I think I did wrong until I get an answer.
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.