Spinal Taps and Google Maps. #Lupus

I had a spinal tap done yesterday. I had one about 5 years ago that went terribly. With that experience, I really wasn’t looking forward to having another one. Luckily, it went differently.

First off, I’m going to say that if you have to have a tap done, get it at a major city hospital where the doctor probably does dozens of them a week. The problem with my first tap was that it was done by a local doctor who didn’t have the confidence to do it, so she fucked it up. I’ve had ongoing weakness in my lower back since then. I don’t know what the hell she did back there, but I barfed afterwards and they had to give me Valium because I had a panic attack.

I was originally scheduled to go next Thursday, but my doctor called the hospital and they were able to squeeze me in yesterday morning. I was happy to get it over with rather than worry about it for a week.

If you’re nervous, and you have Xanax with you, take it before you check in. Once you’re admitted you’re not allowed to take anything. I learned that the hard way, and sat there with heart palpitations. I felt like I was in the waiting room for an eternity.

Some dude at the front desk told my mom she wasn’t allowed to be there with me. I panicked a little on the inside. My mom followed me back just to take my bag for me when it was time. The nurses and doctor didn’t say one word about her being there, and even offered her a chair. One of the nurses handed her some post-procedure information and said “here’s some bathroom reading”.

If you’re a funny nurse, it makes being a patient suck a lot less. Thank you for that, and be proud of it. It’s the little things, y’know?

I’m built like a feather, so I was able to lie down for the procedure. I was on my side, knees pulled up to my chest as far as they could go (apparently, I’m pretty flexible, despite feeling like the Tin Man most of the time). For my first tap, they made me bend over a table, which isn’t unusual, but lying down is much more comfortable. I recommend it, if you can choose. The nurses were really nice and reassured me that it wasn’t going to be as bad as I thought. The doctor came in and prepped my back, and made some jokes about having to do taps on people that weigh 300lbs. He used ultrasound to find the right spot (a technique that was not used the first time) and marked my back with a pen. They first injected the area with Lidocaine to numb it, which is honestly the worst part of the whole deal. It can really burn sometimes but it wasn’t too bad yesterday. This doctor really knew what he was doing. After they do that, the tap needle goes in. They used a pediatric needle, another thing I recommend. It takes longer but is less traumatic in the end. I didn’t feel pain really, but I wasn’t completely numb either, I felt everything that went on. When the needle goes in, you’ll feel a weird pop, it’s hard to describe, but not really painful. Just strange. Sometimes, some people get an electric shock pain that shoots down their leg and makes it kick. It happened to me the first time, but not this time. It can be painful. Somehow they managed to avoid it altogether yesterday. Once the needle is in, you can feel pressure in your lower back, but it wasn’t really painful. It is uncomfortable, though. As the fluid was being collected, I felt some tingling in my lower spine. The doctor had to ask me to relax because I was tensing up, making the fluid take longer to collect in the vials. It took a while anyway, because they used a really small needle, but given the choice, I’ll take the small needle over a big one. There was a point during the procedure where I thought I was going to panic, because reality set in and I remembered how it went the first time. I focused on this picture on the wall and started singing the lyrics to some song in my head. I can’t remember what the picture or song was now, but I managed to somehow talk myself out of the anxiety. I wasn’t able to count because I couldn’t see, but my mom said they took 5 vials that were fatter than your standard blood vials. The nurse said it was nice and clear, which is great news.

After I was done, I thought I’d have to lie on my back for an hour. Since the needle was so small, I was able to get patched up and go right home instead.

The ride home was hard. Traffic was stop-and-go for part of the way. After the adrenaline wore off, reality hit me and I just wanted to cry the whole way home. My back has been pretty sore on and off. I’ve also been having pain and tense muscles in my butt and legs. My neck has been pretty stiff. Spinal taps cause headaches in some people because it can create a small air bubble in your cerebrospinal fluid. Luckily, I haven’t had any major headaches, just small ones.

When I got home, I crashed. I couldn’t stay awake. I slept for about 2 hours. My body doesn’t handle stress well because of my adrenal insufficiency.

I’m not sure how long it will take my back to heal completely, but I have to keep the bandages on it for 2 days and skip showering to keep the puncture site sterile. My muscles are pretty sore. I can’t bend over or lift anything. I have a back brace to wear when the pain gets bad.

I will get the results when I go back to my rheumatologist in a couple weeks. He is looking for the cause of my chronic daily migraines. Even though the SPECT scan showed vasculitis, it didn’t determine the specific cause. The Rituxan does not seem to be helping at all. Once we get the results, we can figure out if the Rituxan was the right move, or if I need another lupus medicine.

I love you Mom.

On the way home from the hospital, I saw a Google Maps car. I’ve never seen one before so I was strangely excited about it.


I got my blood test results back from my Endocrinologist.

My Thyroid is ok, no Hashimotos.

Estradiol levels are normal, no perimenopause.

ACTH and renin are low, but that has come up in the past. He stated that my Addison’s is well-managed so all I have to do is continue my same dose of Florinef and Cortef.

My Ferritin is better, just have to take a maintenance iron supplement so it stays that way.

So that means any of the weird symptoms I have had aren’t endocrine-related. It’s good to rule that out so when I see the neurosurgeon we can talk about the probability of everything being chiari-related. When I saw a neurologist he was so ready to just chalk all my symptoms up to my other issues, when in reality, my other issues are starting to level out and what’s left is chiari.

My headaches were really bad yesterday. I woke up with one at 5:30 yesterday morning and had it all day, and at one point was trying not to throw up. It is overcast this morning so the change in the barometric pressure must have been an influence. Once the barometric pressure makes up it’s mind I’m ok, it’s the change itself that seems to bother me.

I actually had a relatively good day the day before yesterday. I’m not sure what I did right, as I never am, but my headaches were minimal until bedtime, and I was able to sit and play Mario video games with my brother and his friend without any trouble. Usually when I sit to play I get a headache during, and I just deal with it, but it was a nice “vacation” on Monday. It made me aware of what is within the realm of possibility if I have surgery. It’s easy to not realize all the things that could be helped if I have a successful decompression. The only activities that don’t give me a headache are standing, walking, and lying on my side completely flat (with a pillow) everything else causes a headache. When I say everything, I mean anything from sitting, to bending over, to doing my hair, to showering, to swishing mouthwash, and laughing, and the list goes on. And they aren’t ‘just headaches’. They’re worse than migraines. They are absolutely unforgiving and really hard to get rid of them once they start.

It would be nice to come out the other side with my symptoms reduced even by 70%.



Go to bed with headache, get up with headache

So after having the neck and back trouble yesterday, it lead to a headache. It’s the typical “starts at back of skull, down into neck and shoulders, creeps up your face, into the trigeminal nerve and forehead, always on the left side” type of headache that I always get. (Your trigeminal nerve is by your TMJ) It’s always throbbing pain. I sat in the jacuzzi with the jets on for about a half hour, and it loosened up my back. I felt better for a little while but it came right back. When it was time for bed, it was a full-fledged headache again. I took some medicine before bed, but I can’t remember what specifically.

I woke up with the same headache. I’m always surprised by the fact that I can sleep and be in that much pain. I guess I’m just used to it. I’ve been getting these headaches for years. I took Rx-strenghth ibuprofen (duexis), and a headache medicine called Fioricet. There isn’t a whole lot that helps this kind of headache though. It’ll probably take the edge off, but I have a feeling it’s going to be a battle all day today. Once your trigeminal nerve gets fired up, there really isn’t any medicine that helps that. It’s very VERY painful. I’ve heard of others refer to trigeminal neuralgia as “the suicide disease”. I don’t have nerve damage(as far as I know), but I have an idea why they call it that. The pain is very intense and relentless. The only relief I can get is to distract it by putting a really hot hotpack on my face, I mean like “almost burn you” hot. That pain feels better than the nerve pain.

This time, I’m positive the trigger for this headache was straining my back and neck muscles. Stress and sitting too long (especially in a movie theater) trigger these headaches too. But a lot of the time, they happen for no real reason. I usually get them in clusters. I’ll be fine for a few days, and then the first headache starts, and it turns into this 4-day battle. I wish I was exaggerating, but I’m not. When you have Chiari Malformation, it’s not going to feel good.

Things that give me a headache

“I was at a bar once, and no one was talking to me ‘cuz I just did a show, and I ran into a guy, and instead of saying “excuse me” he said “get the hell out of my way,”, so I said “Go to hell”, and I ran away. He caught up to me, he had on a hat, a nose ring, an eybrow ring, a goatee, a tongue ring, and 3-earings. He said “Hey man, you have a lot of nerve,” and then I said “Hey man, you have a lot of cranium accessories.” – Mitch Hedberg

This isn’t really a rant, I’m just writing this up so people can compare their symptoms to mine. Feel free to give me a shout out or ask a Q.

As stated in a previous post, I have a hard time wearing ponytails, braids, and buns. I’ve also had a hard time wearing hats that aren’t adjustable, because they tend to be a little too tight, and I’ve actually gotten a headache from a hat before. I can’t wear headbands unless they are really loose and then they usually fall off, so I don’t even bother with it. The claw-type hair clips bother me too.

I have 4 pairs of glasses, one of which I call my “headache glasses” because they are the lightest pair. My other glasses are heavy and having any weight on my face at all is bothersome when I already have a headache. I have a problem with wearing sunglasses too, do I want to squint from the sun, or have weight on my face?

I can’t wear certain earrings and necklaces that are bulky or somewhat heavy because after a while they will start to drive me nuts. It’s hard to explain how it feels. It’s not necessarily pain, but rather a “nails on a chalkboard” sensation when wearing a piece of jewelry and having a headache at the same time. Kinda like when you take your jeans off after a long day and put your jammies on to be more comfy, you’re just like, “Oh man get this off me.”

Being in the car and having the A\C blowing on my face gives me a headache. It makes the muscles in my face really tense, and kinda gives me that “ice cream headache” effect. While we’re on the subject I might mention that when I actually have ice cream, I get back freeze instead of brain freeze. Weird, huh?

Having wind blowing in my ears leads to an eventual headache too. I always either avoid being outside on windy days, or wear a beanie over my ears to protect them.

Coughing, laughing, sneezing, yawning, hiccups, brushing my teeth.

Sitting up in bed is the absolute worst position. Reading in bed is always very difficult. I have to be careful because this produces one of those 16-hour muscle spasm headaches that I can’t get rid of. I recently got a nook tablet and a neat book stand called a “book seat”, and now I can prop up my nook and lay on my side to read, which has helped, but I still have to switch sides every 10 minutes or so because my hips are like FUCK YOU.

Sitting at a desk sucks. I haven’t been able to do art consistantly in forever. It’s really discouraging.

And of course the usual, being overstimulated with loudness and bright lights, which is why I guess I’m not much of a nightlife person. It does me in every time.

Sitting for any length of time makes my neck extremely stiff, and always leads to a headache. Movie theaters are like a torture chamber, loud, bright, and lots of sitting. I still go though. I’m not a total wet blanket. I still go to concerts, baseball games, comedy shows, you name it. But I always battle the headache monster.

I guess this is why I was upset at the Neurology clinic the other day. I want some help. I don’t want them to just shove another pill down my throat so I can be a zombie instead of a human with a headache. What’s the difference? Surgery is really the only way I am ever going to be able to do all these things without a subsequent headache.