As many of you know, I’ve had a bunch of health problems for a long time. Even as a kid I had chronic stomach, ear, and sinus issues. At 19, I developed my first chronic pain condition. My medical rap sheet is a mile long.
But, I’ve NEVER experienced anything as disabling as these chronic migraines I’ve had the past few years. Migraines up to 20+ days a month, and pretty much ALL DAY when I have them. The longest straight stretch was 9 days of migraines. I also get excruciating neck pain, vertigo, and nausea with the migraines. Perhaps the worst thing is that when I have them, I can’t read or write. I can’t watch tv. I can’t stand to be in the car. Even if I don’t have a migraine, a long drive will almost always guarantee I’ll develop one, so we plan very few getaways, even when we want, need, and can afford them. There is no escape. Just long days and nights laying in the dark silence, hoping to God the pain stops.
So far meds haven’t worked too well. Botox didn’t work. Tomorrow I try my first nerve block and I’m cautiously hopeful. Still, through it all, I try to remember how lucky I am that I don’t have to work, as I have no clue how I could ever hold down a job like this. I’m thankful that my husband is committed to taking care of me and loving me even when life sucks. I’m glad my kitties bring me a smile. I’m glad to have social media to vent to lol. Looking for things to be grateful for makes you feel better, even at your worst.
I’ve been having a tough time lately mentally and physically. These constant migraines and stomach/digestive issues have really got me down. Sometimes I feel like life isn’t even worth it if every day is going to be like this. If you’ve ever had chronic, unrelenting migraines day after day, you probably understand how I feel.
I am trying hard to get this fixed or at least lessened and my doctors are trying different things, but nothing has come close to solving the issue yet. I feel like I’m just being dragged through each day and the only time I feel good is when I’m asleep.
This is my favorite time of year and I normally love to go out and do Halloween-ish or fall-ish things, so not being able to do so compounds my sadness. This weekend my husband has plans to take me several hours away for my birthday to see the Jack-o-lantern spectacular in Louisville, Kentucky. I want to go so bad and will try to go if at all possible, but I fear I won’t be able to if the health issues are acting up bad.
Luckily, the event is a drive-thru event, so I wouldn’t have to do much physically, but if I have a migraine or stomach issues, driving that far obviously wouldn’t be fun and would kind of spoil the weekend. Keep your fingers crossed for me!
Just 17 days after my last ER visit for the same reason, I had to pay another visit this past Sunday because I had yet another migraine lasting 3 days or longer. This is getting to be a habit and that is really not a good thing. Some of these migraines are lasting longer than 72 hours which puts them into a dangerous category that less than 1% of migraine sufferers have called status migrainosus. Reportedly this is one of the 4 ways that migraines can actually kill.
Needless to say, this is not reassuring. I am meeting with my doctor to reevaluate my meds and hopefully that will help, but who knows. I’m afraid to get my hopes up at this point. If I’m not as active on WP, please don’t think it is because I am ignoring you all, I am just not up for much right now.
Yesterday was kind of hellish. My migraines were worsening and I had already reached my limit of medicine I’m supposed to take in a week for them, so I ended up going to the ER. There they gave me what they call the “migraine cocktail”, which includes Toradol, Benedryl, and a nausea medicine.
Unfortunately, I had a horrible reaction to the Benedryl. It is really weird because I take it all the time at home, but I guess the IV version doesn’t agree with me. As soon as they started giving it to me, I could already feel chest pain around my heart area and the room started spinning, but figured it was just my anxiety. However, within a few minutes, my resting heart rate had jumped from below 100 to over 165!
I felt like I was dying. It was a horrible feeling. My body was trying to throw up the offending agent, but of course it couldn’t, as it was administered by IV. It was at least a half hour to an hour before I didn’t feel like screaming and stopped thrashing around in incredible discomfort.
I ended up having to stay in the ER longer so they could do an EKG and blood work, which they hadn’t originally intended to do, but with the heart rate spike they wanted to make sure nothing else was going on. Luckily, that stuff came back ok (although I was deficient in potassium and had to drink a nasty concoction to help that).
On the plus side, the migraine is better, but still not feeling great. Going to try to take it easy all weekend.
Three days straight of migraines that won’t go away. They’ll ease up a bit when I take migraine medicine, but then they come back. Sadly, my migraine medicine (Sumatriptan) is one that you aren’t supposed to take more than 4 pills a week, so I don’t know what I’m going to do if they keep coming back. Please keep me in your thoughts and prayers. If I’m not very active on WP, you’ll understand why.
First off, I got my covid results back yesterday. No coronavirus detected! That was certainly a big relief! Now I don’t have to worry about staying quarantined for weeks!
On the sucky side of things, I did have a full-blown migraine last night. I’m not sure if it was caused by my anxiety about the test results the past few days, or something else, but it was miserable. When I get migraines like that my neck kills me too (you can actually feel the tension and swelling in the back of the neck). Like most migraine sufferers, I can’t stand sound or light, and I get nauseated and dizzy as well. I went to bed early and slept about 9-10 hours, but still feel the aftereffects of it today and fear it coming back in full force.
I’m also a little sad because while I was unsure of my covid status, some friends of mine got together for the first time in forever, and of course didn’t invite me (I don’t blame them, they knew about the covid possibility), but it still bummed me out that I missed the chance to see them.
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.