The past week or so has been rough. Twice I’ve gotten super sick while out on short trips and had to lay down in the backseat and pray I didn’t throw up till we got home. When getting out of the car I was so dizzy I almost collapsed against the car. Chronic vestibular migraines are no joke. Feeling pretty low but hanging in there. I wish the depression and isolation didn’t set in during flare ups like this…honestly that can almost be as bad as the illness itself.
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.
These migraines are killing me. Today’s the 8th day in a row, beating my last record of 7 days. It is affecting my whole life. I can barely function.
The stress of dealing with marriage counseling and the hurt over my husband’s online behavior that I see as a betrayal of our relationship is probably playing a big role in this particular flareup, which makes me feel resentful too. Almost like he is putting me through this. He is doing everything he can to make amends, and I deeply appreciate that, but the hurt is still there.
I have to debate every day whether I should even take migraine relieving medicine (no matter how much pain I am in) as I run the risk of causing rebound migraines if I take more than a few pills a week. It is SO frustrating 😦
marble eye bulging out of its socket stiff neck coiling thick as marine rope dizzy nausea swooning drags me to the bed hated pain blazing throws me into hell again and again and again and again and again and again and again and again and again and again and
It’s been a minute since I just did a life update, so let’s take a minute to do so! I’ll break it up into categories for ease:
Physical health – Thank God, the Topamax increase seems to have helped the migraines quite a bit. They aren’t gone entirely, but have been much better lately. Still having some digestive issues, so I’m seeing the GI doctor soon. We suspect Gastroparesis or some other motility disorder might be at play. I’ve already been following a gastroparesis diet and it has been helping my symptoms, but we won’t know till I get a test obviously. That condition is really common with Ehlers Danlos though.
Mental health – Uh, all over the place. Anxiety like crazy. Kinda hyper. Hard to concentrate and focus…that one has been a real pain lately. Even getting stuff like this done isn’t easy. My brain wants to go in fifty million directions, none of them what they are supposed to be doing. Depression too, but kind of medium level. Like just the blahs. Apathetic. Need constant positive stimuli to not start feeling blah again, but that isn’t reality, is it?
My writing – Finally, some good news!!! First off, I was contacted by a music professor at Central Washington University in Washington state who wants to use one of my poems to set to music for a project she and her colleagues and a few students are working on. They will compose music for the poem (for instrument and voice) and then put together a concert music video for it (because covid and all I assume) and it will be released in April. Of course, I will be credited for my part in the project, and will share the video when I can.
Also, I just got an email today that the educational resources website Twinkl has chosen my blog to be one of their Top Autism Blogs of 2020! They get pretty high traffic on their site, so it is quite an honor and I’m psyched about it!
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!
Ironically enough, someone commented on my last post about how maybe some of the drugs I’m on are part of the problem with my digestive issues recently. They were right about part of it at least. Turns out the stomach pain and nausea (and possibly some of the constipation) were caused by all the NSAIDS they had been giving me for the migraines lately. The toradol shots, the ibuprofen and naproxen I was told were safer than the other pain relievers when it comes to rebound headaches, etc.
So, now it seems I’ve developed ulcers and gastritis. Yikes. No more NSAIDS for me, at least for right now. They also found a hiatal hernia, but didn’t know if that was actively causing any problems at this point as it didn’t look very big yet.
So, now I’m just chilling out at home, eating bland foods, watching horror movies on tv, reading on my new Kindle Fire, and letting my body heal.
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.