It’s been awhile I have been on here, but I have been so fatigued. I had an incident yesterday that really scared me. I was wondering if any of you have had this happen…
I was pulling weeds in the yard. I was also taking breaks so I don’t think I over did it. First I got this feeling on the upper part of my arm. It was a burning feeling and hurt really bad. It then started to travel down my arm. It felt like hot razors were slashing my skin. I thought I was going to have to go to the doctor. After about 20 minutes it went away, but the pain is hard to forget.
After another break I finished up. It took about 10 minutes. I started to feel funny. Unstable and dizzy. I went inside and after going to the bathroom I was feeling worse. I thought maybe I needed to eat something so I got a bowl of cereal and while I was eating my body was getting heavier and heavier. My son was sitting with me, 13 years old, I told him to get the blood pressure monitor. By the time he got back with it I could barely hold myself up. Luckily my arm was on the table by the bowl. That was the only thing keeping my face from being in the bowl. My son got the cuff on and my blood pressure wasn’t to bad around 90/56 or so. It was jumping up and down and so was my pulse anywhere between 85 and 135. I could barely talk or open my eyes. I was slurring badly. The kids tried calling my husband and didn’t get an answer so I managed to tell them to call 911. It took a bit for them to translate what I was saying.
The paramedics checked everything and it all seemed ok, but I couldn’t move or really talk. I knew what was going on, but I couldn’t let them know that my mind was still active.
They got me to the hospital and they ran more tests. As usual they didn’t find anything at all. I’m so tired of that happening. At least this time they saw what was happening. I became more alert as time went on, but I could not move my legs from the knee down and my hands were not reacting properly. After a bit I was able to wiggle my toes a little but not fully and it took A LOT of effort.
After 5 hours I seemed to be back in working order. They let me go home since they couldn’t find anything. I was still shaky but could walk and talk normal. I got home and pretty much slept until a few hours ago. I am still shaky today, but I have finally been able to stay out of bed for a few hours. I do feel a nap coming on very soon.
Also for a few months I wake up and before I get out of bed I shake uncontrollably for almost a minute. I don’t know if this has anything to do with it.
I know I have talked about my migraines before but they are kind of scary. I’m not sure as to what to do when I get them. I’m not talking about my normal migraines I’m talking about the kind that I had yesterday. I guess that is what it was. It started a few years ago. I would get confused for a few hours. Not be able to talk correctly. I’d slur my words or say the wrong words. I’d be dizzy but that was about it. This year it has upped the ante on me.
Earlier this year I woke up in the middle of the night and could barely move the left side of my body. I could move it but not make it do what I wanted it to do. I could barely talk at all. I was slurring my words and could barely get them out. The left side of my body was also numb and tingling. It lasted about an hour. I had an MRI, EEG and EMG and all the tests were normal. I’ve been told that these issues are probably caused by migraines. Not they are.
Yesterday I got up around 9am and by 10:30 I was dizzy and couldn’t think. My arms felt like they weren’t part of my body. I felt like I had been drugged. After a bit it went away but kept coming in waves but not as bad as the first time. By dinner time I tried to cook and it got worse and worse. I did get everything out to cook, but I didn’t know what to do with it. I just stood there looking at everything and didn’t know where to start. My husband came home and I told him that I had lost the chicken. He started looking for it. I had tried to explain to him what was going on but I couldn’t so I called my mom, since she knew already. She asked if I needed to go to the hospital. I told her I didn’t know and that I would let her know. As I started to go back to cook I remembered that I had to go somewhere. I wasn’t sure where, but that is what kept going through my mind. I had to go somewhere and take a shower first. It’s good my husband was there to take over dinner. After my shower I remembered that I had to cook dinner. That was when my husband came in and told me I was going to the hospital. I was so confused and couldn’t think straight at all. It was scary.
Today I have been a little shaky and my legs have been weak. For the most part I have been OK. I have read that if I have those types of issues that I shouldn’t take my migraine meds so I’m not sure how to handle them. Anyone out there have them? I’d love some advice. I’m going to my Neuro tomorrow. I’ll ask him about it. I want to know for sure if these are signs of a migraine or if they are something else. It all sounds right…
All my tests from the Neuro came out good! I don’t have a neuro disease. He is pretty sure the issues that I am having in that area are from my migraines. I figured that but we had to be sure. He gave me a new medicine to try out. It is Relpax and I have taken it twice so far and it has worked so far. It doesn’t make me sleepy or loopy. I can function as a normal person!
I didn’t realize there were so many different types of migraines out there until I started researching online. It did help me to talk to my Neuro about what was going on. It didn’t even occur to me that many of the issues were migraine related. Here are the types of migraines that I am having…
Migraine with Aura – this is the classic migraine. I see lights flashing around my eyes, get the bad headache, sensitivity to light and sound and nausea. I get these in clusters so I end up having them for a few days to a few weeks.
Basilar Migraine – with this one I have trouble talking. My speech is slurred and I become really confused. I feel like I have been drugged. I get dizzy also. This one happens a few times a year and lasts for a few hours.
Nocturnal Migraine – this is pretty much a regular migraine but it happens around 4 or 5am. It is so bad it wakes me up.
Ocular Migraine – this one causes vision problems. It is almost always in my right eye. It starts with flashes of light and eventually my eye starts seeing fuzzy speckles, like a tv channel with no signal, and it continues until I can’t see out of that eye at all. It usually lasts for 30 minutes to an hour.
Hemiplegic Migraine – this one is very scary. It’s like you are having a stoke almost. The left side of my body was very weak, I lost most of my motor control on that side and that side was tingling. It didn’t bother the right side at all. I had trouble talking and getting the words out of my mouth. I felt like I was pushing them out. This has only happened once, thankfully.
Well, that’s an overview of my migraines. Do you get migraines? If so what types and symptoms?
When I was younger I’d wonder how my grandparents could get up at 5 am and stay up til 10. I’m still wondering that same thing today. In the past few years I have started waking up earlier, and earlier and earlier! I’m getting old! I’m supposed to be up all night watching TV and hanging out. Now, I wake up around 5:30 am and sit on the deck with my coffee. If I make it correctly.
Yesterday I forgot to put the coffee in the coffee maker and it’s the dispensing kind and my mugs are dark brown inside, so I didn’t realize it until I took my first sip and was trying to figure out why it was so darn weak!!! Then it hit me, there was no coffee in it! Lucky for me I put cocoa, cinnamon and Splenda in it so it was like drinking hot chocolate and not hot Splenda water. I did remember to put the filter in at least. I took extra care this morning with my coffee. I had to get it right the first time!
So anyway… yes I wake up at 5:30 every morning now. Between 9pm and 10pm I am ready for bed. Grandma used to stay up a little later than that. The thing is I pretty much have to take a nap everyday. At least 2 hours. I don’t remember Grandma ever taking a nap! Hehe! Like I said I am getting old. Well, I do realize it is just the fatigue from the SJS, but it still makes me feel old.
I go to the Neurologist today to find out the results of my neck MRI and my EEG. I have already had brain MRI’s and they didn’t find anything. It’s so sad to hear that. I was pretty sure I had something up there! So, I’m not very optimistic about the EEG. If they didn’t find anything in the brain MRI then I don’t think I’ll have any brain waves. 🙂
Gotta joke about this stuff you know? It’s the only way to get though it. Laughter is was gives us hope. Who wants to sit around feeling sorry for themselves all the time? Apparently there are a lot of people out there that do. I don’t understand it. My life isn’t over because of Sjogren’s it’s just different.
You all have a wonderful day today! Find something to laugh about!!!