What is Lupus and Lupus headaches suck!


Hello Everyone! Ok, what is Lupus? People ask me this all the time and it can feel like such an ominous concept, as are all diseases; it becomes scary and uncomfortable for many to discuss. It is serious and can be deadly, but more often than not, it isn’t. It is; however, an asshole to live with. Lupus is an autoimmune disorder. In contrast to HIV where your immune system is underactive, in Lupus, our immune systems go hyperactive. No, there is no way anyone can contract this from me. There are those who’s overactive immune systems “go hero” and attack illnesses with “extreme prejudice” (thank you Major Payne) but I don’t have a high speed immune system like that. My immune system is like a blind dog that smells the female in heat but humps the pillow next to her. Moreover, if I get strep throat, my “special needs” immune system attacks my kidneys, brain, joints and/or causes me to lose my hair. So, I don’t have tonsils anymore.

I was going to write about Lupus arthritis, but I ended up with writers block mid blog, so I’m going with what’s been plaguing me every day lately. I’ve had joint pain every day, but holy cow, the headaches! I’ve had headaches most every day for weeks and they are awful. Lupus headaches, is a term that has not completely been established as an absolute yet by scientists, but research is being conducted regularly and despite it being a theory, many doctors use the term. What I know, is that I have two types of headaches and sometimes one gets triggered by the other. I have, what feels like tension headaches, even when I’m not stressed or clenching my jaw, and these are often the precursor to the migraine-like headaches. Excedrin? Ha, that’s cute, but no. Not much gets rid of these things. I have Tramadol, but it might as well be sugar pills. I can take half a Flexeril (muscle relaxer) because a whole one makes me too tired, but it does nothing. What I do use is marijuana. It helps, for about an hour or so. After I’ve eaten us out of house and home (part pot, part because the headaches prevent me from being able to eat), laughed at episodes of “Raising Hope”, and lay on the couch for a while, the marijuana starts to wear off and I end having to keep my head down until bed. My chest is bothering me from smoking pot in my attempt to alleviate the headaches and joint pain but oil or edibles take about 2 hours to kick in and I may throw it up before it has time to kick in because the nausea is real. See, the marijuana helps with nausea, so it prevents me from having to regularly re-enact scenes from, The Exorcist. Bonus! Needless to say, I have had to make an appointment for this issue because well, I need my lungs and I honestly don’t like being stoned all the time.

It‘s postulated that headaches related to Lupus are due to CNS involvement. Further, evidence shows that those who have Reynaud’s Syndrome are more likely to experience said headaches. I have Reynaud’s (which seems to be progressively getting worse), and I have Lupus induced neurological manifestations such as: short-term memory loss, confusion, concentration issues, and the inability to remember words so I have to describe what I’m trying to say (it’s like verbal charades, I want to eat the round thing that has to be cut in half and put in the toaster. Word- English muffin!). I also have digestive system dysfunctions, parethsesia (tingling/pins and needles feeling in my feet and hands) and so on. So, if I forgot to call you, forgot plans or an appointment, I promise I didn’t mean to. So many squirrels, shiny objects, and um, I forgot what else.

I’m going to be asking for Imitrex again to see if that helps me because I haven’t had it in a few years. Although, there is speculation regarding whether or not Lupus headaches may be caused by circulation issues and Imitrex is a vasoconstrictor. This theory makes sense considering its likely correlation with Reynaud’s. I take large doses of L-Arginine for circulation because Aspirin didn’t help. I am not on the highest possible dose of the Arginine however, so I may have to up it to see if it helps. Also, my doctor tells me if the L-Arginine doesn’t help my circulation issues, Viagra is an option. I’ve considered this, but I’m just not certain I’m mature enough for it because I may want to try it on my husband for “scientific purposes”. I’m mature enough to carry a gun but give me a katana and household items may end up cut in half. I am the parent that has to walk away because I’m laughing at the bad behavior while my husband stands there shaking his head saying, “Wow Michelle”. I digress; my conundrum, if my headaches are the result of a lack of circulation, Imitrex isn’t the answer. The only thing I can do is try it and see. Meanwhile, thank you Washington for your marijuana laws.

Lupus headaches can be as debilitating as migraines and may signal the onset of a flare. Mine get worse when I’m having estrogen spikes because Lupus and estrogen together are like evil “party goblins” (Iliza Shlesinger) going Hunter S. Thompson in a hotel room on my body. I don’t know what triggers these headaches because I still get them when I take away would-be triggers. I don’t know if I have brain lesions but I read an article about a woman who feels, based on her experience, there may be a link between active versus non active brain lesions. I don’t know. I just know these headaches are awful and I cannot wait until this stint ends. I know it will, they always do, but it can be weeks to a couple months before the angry migraine demons end their reign on my brain. If anyone has any good suggestions to help with this, please leave a comment. Heck, if you feel like leaving a comment pertaining to any of this, feel free to leave one. J I look forward to hearing from you. Have a great day!

 

 

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