Tag Archives: Occipital Neuralgia

Chronic Migraine, Life, Occipital Neuralgia, Surgery

The Noggin’ Chronicles Part 9

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05-01-23. Warning: post op pix attached.

“It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of light, it was the season of darkness, it was the spring of hope, it was the winter of despair.”
~ Charles Dickens ~ “A Tale of Two Cities“

I can’t say that this has been either the best nor the worst of times. There have been a few times I have questioned my sanity, but then I realize this has been an overwhelmingly positive experience, despite a few lows.

This is the second time today I’ve written this post. Initially, I was grumpy about losing the first draft, but as a writer, I have always found edits are an essential part of the process. So, here I am to make my initial post more concise. Heh…

It’s been a month since my head was sliced and diced and things were moved around to make life a little bit easier. The recovery is slow, for sure. However, at a month out, I’m glad I have had the nerve decompression / excision surgery. (Disclaimer: it will be at least the 6-month mark whether or not this will qualify as a success, but I’m thinking positive here. In some patients, it’s about a year. It all depends on what happens when the nerves “wake up.”)

Last week I went back to work about the 3.5 week post-op mark. It may have been a little too soon. I tried to power through the 40 hours, but only made it 39. My boss’s boss told me I could take it easier if I need to and work half days if necessary. It was very sweet of her and I may need to take her up on it. However, I also don’t want anyone to have to pick up my slack. My squad already did that for a few weeks and it’s hard for me to ask them to do any more. They are a great bunch of guys and are truly appreciated.

Fortunately, I’ve managed to figure out a plan for the ice packs at work that make me look like a complete dork, but do the job they are intended for. I don’t think I’m going to share a photograph of that particular look at this time. There’s only so much mocking I can take. LOL!

Of all the plusses… the BIGGEST has been a long prayed for relief of the Occipital Neuralgia / Migraine pain. In the past month, I have had a total of 2.5 days of pain. I haven’t been this “pain free” in years. And I’m still hurting a bit from the surgery, but the surgical pain is NOTHING like the 24/7 agony that drives a person to think about either ramming themselves headfirst into a concrete pillar until they are unconscious or worse. We don’t need to discuss worse. You can imagine.

The second biggest plus has been a reduction in medication. I have tried literally EVERY SINGLE medication for migraines. (Not an exaggeration.) I have even been prescribed off-label meds to try to get the conditions under control. For a year I was even on low doses of morphine which has it’s own side-effects. I plan on writing a post or two about the medication I’m currently weaning off of. I just want to say that evil doesn’t begin to describe it and the black box warning should actually read, “Agent Orange and Thalidomide would be a better option than what you are about to ingest.” Once that medication is done and over with – hopefully later next year, then the process begins for the next one. I’m praying to be as medication free as humanly possible by 2025.

However, even though the financial cost is high, what’s made it worth it is starting to get some semblance of a life back. These conditions rendered me to a level of existence, but not really living. These days, I’m actually looking forward to making plans and being able to DO things. The first thing I’m so excited about is Eldest’s wedding next month. Before surgery, I was afraid I was going to have to go, pretend to have a good time and sit there doped up on medication to make it through. Who wants a life like that? Not me. The timing of this surgery was definitely a God thing.

So anyway, I haven’t wanted to post any pictures until I had a decent benchmark. 30 days seemed to be ideal. (And yes, the birthmark makes things in the later pictures look worse than they are.)

03-30-23 I was Borg. This picture was taken in the recovery room immediately after surgery.
04-30-23. No longer Borg! The “pink” down the middle isn’t just the incision / scar. The color is part of a very large birthmark on the back of my head (about the size of my palm extending to the right.). Fortunately my hair is growing back and covers most of it and eventually the scar too will be covered.
You can actually see where the port wine color of the birthmark.. And the neck incisions on both sides are healing up. Just showing this site because both would be superfluous.

Anyway, all things being equal and knowing what I know now, this was, at least at this point, a surgery worth undergoing. I said from day one that even if it reduces the number of days and the pain 50% it would be worth it. Thus far, it’s exceeded expectations. I pray it continues.

“Jesus, help me to keep my focus on You when the pain, hurt and emotions are overwhelming. There is so much good and so many things to be thankful for. Please strengthen my mind, heart, and body, and if it is Your will, I pray for a full and restorative healing.”

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Chronic Migraine, Life, Migraine, Occipital Neuralgia, Surgery, Triggers

The Noggin’ Chronicles Part 8

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04-21-23 / Friday

When I’m not feeling overly well, I have several playlists I listen to depending on what I’m doing, experiencing or feeling. I find outside of reading, music is a balm that helps make everything better. Right now, I’m listening to Elton John. I don’t know if that tells you anything or not. However, it’s “that” kind of day. Last night’s pain abated with meds, but returned earlier this morning. Hubs took a look and the Bermuda Triangle of my head is still a little puffy. So once again, I’m laying on an ice pack and I’m trying to distract myself by listening and writing. However, I think a nap is called for. Maybe that will help.

04-22-23 / Saturday 1900 CDT

A nap was definitely in order. The last two days have been pretty rough, but that’s okay. I know to expect ups and downs. The carousel just keeps spinning round and round.

The stomach bug has been hanging on for over a week. Today, I may not have made a good choice to hurry things along. I went out this afternoon on a Starbucks run. I haven’t had a cup of coffee since March 28th and while I love java, it doesn’t necessarily like me. Nor does my body react favorably to a Frappuccino. So what did I do in my infinite wisdom? If you guessed ordered and drank both, you would be correct.

Photo Courtesy: Elgin Akyurt

The lovely cup of java stupidity had it’s intended affect followed up by the Frap which turned my bowels into a tsunami storm surge. I expected this. I was prepared for it. What I was not prepared for was the headache that darned near sent me to the ground in the fetal position while the storm was raging.

Lemme tell ya, I don’t know if this head thing is a headache or a migraine relocated to a different position in my head or what it is. Right now, the entire back side of my head has been hurting. It’s a throbbing that I haven’t experienced in that area of the noggin and I haven’t had a migraine in almost a month. I question if the coffee has lit the fuse on something that could be very bad. Needless to say, I think I’ll be NOT partaking in my favorite beverage again any time soon.

04-23-23 / Sunday at 0400 CDT

Oh for the love of all that is pure and holy… I am 5 days shy of being a month post-op. I was feeling pretty decent until yesterday and then whammo. Literally, I was in the loo having issues and suddenly the entire back of my head experienced what could only be described as a level 12 migraine for a few minutes and then it backed off and is now located toward the end of the incision near the top of my right ear about a level 7. This spot is where I have almost always gotten my migraines. I’m icing it now, but mercy… this hurts. I haven’t had a migraine since surgery and NEVER had anything like this happen.  

There’s also a pretty massive weather front that came through which is normally the biggest migraine trigger for me. I’m feeling down because I hurt. It’s the middle of the night. Hubs is dead asleep as are the Grands and my Youngest is at work. (However, she is texting me so there is something positive.) Even the dogs don’t want to commiserate with me.

I took a couple of extra strength Tylenol and I’m hoping that helps. I’m also trying not to cry because if this pounding is actually a migraine, crying will just make things worse. Add to all that I’m supposed to go back to work in a couple of days and well… I’m down.

I know that this surgical recovery takes 6 months to a year, but it was sooooo nice not to have the migraine pain. It’s literally been years without the non-stop pounding and the past three weeks have been life changing in a way that I could actually see who I was and who I could be without the pain.

For ages it seems I have let everyone down many times over and I haven’t had anything resembling a social life in who knows how long. I remember once upon a time having one – being able to go out with friends and family without ever thinking about the cranium hurting or wanting to run headfirst into a wall until I’m unconscious. I don’t ever want to go back to that place, but that place is currently visiting me. I’m scared to be honest.

Photo: Engin Akyurt / Perfect example of either a Pink Floyd song or a wall I would feel like running headlong into. Your choice.

I said that this surgery would be worth it even if it cut down the number of migraine days or the percentage of pain I experience. Maybe this is just “one day” or maybe more. I do know before surgery I was in 24/7 headaches and averaged 20 actual migraine days a month.

Trying to think positive here and maybe this is just a one step forward, one step back kind of thing. Anyway, I thought I would share in case anyone else has experienced this. You are not alone. I’m not alone. We are in this together.

Animals, Chronic Migraine, Dogs, GSD, Occipital Neuralgia, Pets, Surgery

The Noggin’ Chronicles Part 7

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04-18-23 / Tuesday

Next week, I go back to work. I’m not quite sure my head is ready for everything, but I need to rejoin the land of the working class. I really miss the camaraderie in my squad as well as the many puzzles I have to piece together to do what I do. I wish I could say this has been an “enjoyable” time off, such as a vacation, but it hasn’t been absolutely horrible like the recovery of a few other surgeries I have undergone.

My head is still numb in parts and there are other parts that have an indescribable pain, especially when bending over trying to pick up something from the floor. My knees prefer a boycott of the action, but I’ve been getting a few “squats” in so I suppose that’s something. As the occipital nerves that have been decompressed and “relocated” reactivate, it’s my understanding that it will be “uncomfortable,” but I don’t know yet if it will actually hurt. Who knows if that makes sense? This surgery doesn’t make sense, yet it does.

The surgeon has recommended physical therapy, but I’m doing the gentle stretches and massage on my head on my own right now. I’m hoping it’s enough to keep the scar tissue at bay as I tend to have hypertrophic scarring. He’s also prescribed a compounded topical medication to help things. It’s supposed to arrive here tomorrow. I’d do a happy dance, but that kind of movement is discouraged.

Hubs says the incisions look good – one is healing particularly well and the others are coming along. Tonight will be a “weekly” picture night so I can see for myself what’s going on. It’s one thing to feel my head ( or not in some places) and to have him tell me so, but it’s another to see it for myself. Unfortunately, the mirror in the bathroom doesn’t work well for such an inspection because I’m horribly nearsighted and can’t get close enough for detail. The pictures allow me to zoom in and critique my cranium’s job of healing. And let’s face it, sometimes we just have to see it for ourselves.

04-19-23 / Wednesday

There are some days I have to wonder about the recovery process. Tonight, I feel like crap, but I’ll get to that.

This morning I felt pretty decent and went for a “slow” walk between 1/2 – 3/4 of a mile. Hubs had our GSD with us and then a couple of strays decided to join the party, so it was definitely a slower pace than my typical walking speed.

The two interlopers on our little walk today. Fortunately my GSD is used to small dogs. And after a friendly introduction, the little black Pug seemed to fall in love with Rory.

And in all this time, I don’t know if I’ve ever introduced you to my pups. We give the dogs “titles’ on their first birthday as their personality has really come through by then. Hubs’ big baby is a German Shepherd Dog (GSD) named Rory the Conniving. (Or just plain Rory.) She’s 8 1/2 years old and has hip dysplasia, but she’s hanging in there. She’s one of the best dogs we have ever had. She’s smart as can be and she knows just how to use her big brown eyes to get Hubs to do anything she wants.

This is my favorite Pic of GSD: Rory the Conniving with me last year. She was snuggling with me during a migraine.

And while I’m at it, I may as well introduce you to the mutt who makes Rory’s life a nightmare, Gigi the Incorrigible. She’s a Heinz-57 of Boxer, Pittie and Lab to the best of our knowledge. Gigi was a birthday gift from Eldest to Youngest and somehow in the mix of things, I became her person. She came by her title honestly. Until the great windstorm this year which demolished the trampoline (which also took out the cable lines in the backyard,) Gigi would do some dog-parkour, rebound off the trampoline over the 4 foot fence and make a run for the border like her tail was on fire. We used to have to tether her when she went out, then we got an e-collar. We haven’t shocked her. The vibrate mode makes her stop and the tones make her return to the back door. However, we haven’t had to use it since the trampoline is no more. (A win for everyone but the Grands.)

I took this the day we got back home from Dallas and she was happy to see me. And yes, this is their normal sleeping arrangement on the bed when I’m resting.
Gigi likes to lay all the way down me and give me hugs however, she didn’t quite get her legs where they were supposed to be and THIS happened and was actually caught on camera.
When they aren’t vying for attention or “arguing” with each other, this is a common sight.

Ok. Back to my regularly scheduled programming… the Noggin’. It hurts. I’m not sure how to explain it. It’s in the area in the “middle” of where all the incisions were made, the Bermuda Triangle of my head. It was / is bad enough I’ve literally been laying in bed for a few hours with ice on it. Despite the ice, Hubs said it “possibly” looked a little swollen, but it’s hard to tell because my hair is staring to grow back in. Additionally, I had to take a pain pill. I hate taking them, but the Tylenol wasn’t working. So it’s been kicking in while I’m working on this, which is not only an update, but a distraction from the pain. I’m truly praying there’s not an infection or something brewing. That’s the last thing I need as I’m scheduled to go back to work in less than a week as all the paperwork is done concerning FMLA and everything else. Sigh….

Anyhoozles… I’m going to call it a night and pray my Noggin’ feels better in the morning. Meds are definitely kicking in. Sweet dreams… ❤ ~Celeste~

Chronic Migraine, Life, Nutrition, Occipital Neuralgia, Surgery

The Noggin’ Chronicles Part 6

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Surgery recovery is up and down like a carousel horse spinning in circles, going faster and slower, but always on the same trajectory.

04-09-23: This morning was a brilliant sunrise followed by an isolated thunderstorm. Aside from the fresh smelling air, I didn’t have any expectations of “weather” today as I don’t normally keep up with it. My head, and it’s ever fluctuating barometer, has pretty much always done the work of a meteorologist. So imagine my blurry-eyed surprise when the storm hit and I had NO inclination it was coming. I do NOT remember the last time that happened. Years? Decades? I do not know.

As I hadn’t slept last night due to the insomnia which continues to torment my night time hours, I fell into a deep sleep somewhere around 0900 – 1000 CDT. When I woke up (the first time) I wondered why the house was utterly silent. The family went out to do Easter activities while I snoozed the much needed snooze. A little later on, a second round of storms came through the area. Guess who wasn’t writhing on the floor while praying for the world to stop spinning, the nausea to stop and the jackhammers in her head to stop pounding? Yup. This girl.

Thursday 04-13-23 – Two Weeks & Counting

Two weeks ago today, I had part of my head sliced and diced. While totally nervous about surgery and the immediate aftermath, the adventure continues.

A week or so ago, I made my first foray into town all my by lonesome. I needed to go pick up some meds at the pharmacy which is roughly 30 miles round trip. It wasn’t the easiest experience as turning my head to look around while driving was “strained.” That’s the best word I have for it. It didn’t necessarily hurt, but there was definitely a lack of range of motion. But I made it there alive and back again in one piece so that was an accomplishment.

The first week following surgery, I think I used icepacks almost 24/7. It didn’t matter what I was doing, there was an ice pack nearby if not attached to my head. There was some “obvious” bruising and swelling, which pain meds didn’t really help with due to the nature of the “injury.” You can’t just treat this like a sprained ankle or another surgery, which this is number 9 for me overall so I do have a clue.

Showering was “weird” and a little bit difficult because 1) baby shampoo is made for babies, not grown adults with a LOT of hair and 2) the shower head I prefer has a water pressure that when even on “low” is pretty strong, though not as strong as a Swedish masseuse with man hands strong. A saving grace though has been the hair towel I use because it does NOT cut across any of the incisions where it would be “uncomfortable.” The one I use actually runs higher across the back of my head, but is similar to this one & no I’m not sponsored:

Photo: – Amazon – Hicober Microfiber Hair Towel

This week, I have managed to go out twice! Yesterday, I took Hubs for a colonoscopy. He’s squeaky clean and doesn’t have to go in again for another decade. Woot! (Wait, I’m not sure if you needed to know that, but whatever.)

Today, I went and met Eldest on her lunch break so we could do some searching for a MOB dress for her upcoming nuptials in June. We managed two stores and I tried on 5 of 6 dresses / outfits. I don’t like any of them. (This is going to be another forthcoming post series I have a feeling.) However, when we were done, I was tired. But I had to run two more errands on the way home, from where I’m coming to you now with one of several trusty icepacks, which I think I am naming this one Fred.

HOLY CRAP ON A CRACKER, BATMAN!!! My husband just came into the bedroom and told me storms are coming. that’s two different storm days where I haven’t had a clue one that the storm is coming. This storm is an actual squall line, which normally levels me and I only have a mild headache, which I had assumed was from being out and about. (Still could be. IDK)

Sorry… I digressed. But, like… wow.

Anyway, I know there are ups and downs and around and arounds, but week two has been definitely been better than the first week. I don’t use the ice packs as much, hardly use any Tylenol and feel pretty decent. Part of the healing process though is trying to focus more on my diet and nutrition instead of the Jolly Ranchers that are little rectangles of pure sugar enjoyment.

I know that healing from surgery requires better nutrition so for about a week thus far, I’ve started adding a daily smoothie to my healing regimen. These include fresh and / or frozen fruits, ground flax seed, chia seeds, collagen powder and then depending on what the fruits are I’m adding either “Super Reds,” “Super Greens” and / or powdered beets. I’m also researching nutrition concerning a much better diet to promote healing both inside and out.

I’ve also started adding a. few other vitamin supplements to my daily multivitamin and vitamin D. These include:

  • Magnesium Complex
  • Omega 3 – Krill Oil (found I tolerate this much better than regular fish oil)
  • Health by Habit’s “Hair, Skin & Nails” which includes Biotin, Hyaluronic Acid, Rosehip and Vitamin C
  • Vitamin B Complex – B1, B2, B6, B 12 and Vitamin C
  • CoQ-10

I know there are a lot of things many migraineurs cannot do, but something that I’ve been able to use (since I found a company whose compounds have never triggered a migraine) are essential oils. I have tried a LOT of oils and lots of different brands. I found one that works for me and I generally have a roller ball in my purse for “smells on the go.” I also have a diffuser going most of the time. It helped some before surgery, but post op, the aromatherapy is a game changer when it comes keeping my anxiety under control. With that “set,” I don’t have the blood pressure spikes causing any additional pain. (Plus the bedroom smells amazeballs.)

Exercise will come back as tolerated. Right now I’m doing okay just trying to get some walking in. I still can’t lift anything above 5 pounds. My purse literally weighed 5.3 earlier today. After removing a few things and a bunch of spare change, it’s under 5. After next Thursday the weight will go to 10 pounds and I can increase my activity as tolerated. Mama didn’t raise a fool. I’m going to keep it slow and steady, but I’ll be working more in the garden we are putting in late so there is that.

Anyway, this is what I know for now. I’m going to put Fred back in the freezer with Ethel, Lucy and Ricky and then eat something for dinner while listening to some mellow music while reading one of the many books. Til next time, friends. Lots of Hope, Peace and Love ❤

Chronic Migraine, Life, Occipital Neuralgia, Surgery, Travel

The Noggin’ Chronicles Part 5

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Okay… last long post for a bit, but it’s been a week since I left for Dallas for surgery and I thought I would share the wrap-up from last night’s journal.

First, though I have to say thank you. It’s you fine people with your prayers, thoughts, warm fuzzies and all of that who have made a huge difference over the past week in my universe. It has had far reaching impacts for the better and I’m truly thankful.

Secondly, I got to see the plethora of bluebonnets in bloom. Such a pretty sight and there’s really nothing else like it. The delicate flowers are some of my favorites.

So on to the show…

Surgery Update: Day 5 / 04-04-23

My, oh my. It’s 2157 CDT and I’m done.

It was a very long day. It started around 0300 CDT when I awoke from a drug-induced dead sleep. I attempted to move my head into a position it didn’t wish to go; therefore, I couldn’t get back to sleep and was only able to nap on and off throughout the long day.

I saw Dr. Amirlak this morning after slowly gathering everything we’d (Hubs) moved into the hotel suite in Dallas. I was apparently channelling my inner sloth, but we were not late anywhere. Operating in slow motion is coupled with the “lift restrictions” I have in place. I was told not to lift anything heavier than a jug of milk. I can safely assume my handbag is borderline, but the bag is rather essential to my life and downsizing the weight will have to wait.

Walking you through the major events of my day (with some repetition form the initial post about surgery…) Dr. Amirlak. I truly like the man. He discussed what he did during my surgery. I already read the post-op notes and reviewed the pictures taken during surgery. The lengthy operation was indeed necessary and he described it as “complicated.” I believe this was an accurate and specifically chosen word. I do not believe any amount of medication would have helped my condition (even though I’ve done over 50 combos of meds over the years) due to the facts my greater occipital nerve was being “strangled” by veins and compressed by surrounding fascia and muscle. He set the nerve in a deeper channel and fat from my neck was grafted and set around it as a buffer along with some special nerve protective sheathing. The lesser occipital nerve was similarly done. The 3rd nerves on both sides, which needed to go, are gone. Dr. Amirlak admitted he walked a fine line between the nerve decompression surgery and what a neurosurgeon would do, but I wouldn’t change it. While my head alternates between pain and numb, I can already tell there is a positive difference. There was a lot more I could bore you with, but suffice it to say, I’m feeling “better” tonight. (And my head’s love affair for a good ice pack continues…)

One reason for feeling better is I got the drain out today. I admittedly made a mountain out of a molehill. After snipping the suture holding it in place, it was easily removed. I currently have a hole in the back of my head which will heal in due time. Hubby assured me it’s kinda gross, but getting the drain contraption out of my cranium is already better because I can actually lay down on the ice pack in the way it does the most good.

Dr. Amirlak also discussed the potential scarring. Just for the record, this is surgery #9 and I couldn’t care less about the scars that mark my body. Plus, he’s a plastic surgeon and they already look tons better than most of the others. But I digress…

The other thing that Dr. Amirlak said is I have to do rest, get proper sleep and do the things that I enjoy. I’m also supposed to try to avoid any “trauma” to my head. (He told me about a patient that went to a Bon Jovi concert. The patient was kicked in the head which basically undid everything he did! Like how????) He doesn’t know me that well, but the idea is (at the moment) internally scoff-able. That may be a taller order than the physical recovery from the surgery. I have hurt 24/7 for so long I don’t even really know what I “enjoy” doing as I have done mostly the necessities and not things for “joy” for longer than most humans would appreciate. I’m going to have to have many conversations with myself and God Almighty about letting things go and letting God’s healing hands heal not only my head, but many other parts of life as well.

Another reason for feeling better, though I felt worse most of today, is I’m finally home. Dorothy was indeed correct, “There’s no place like home.” Getting here though, that was an adventure.

The dirt storm we had to drive into…
100 miles from home and visibility stinks
It felt like 1999 & “The Mummy” all over again.

When we left the Metroplex, it was a pretty day, just a little breezy. Nothing major, just “typical” spring-time weather in the Lone Star State. However, we were driving “uphill” home while fighting the wind and blowing dirt. For a bit (around the last 150 miles or so,) the only description of the drive was “fugly.” There were a couple of moments which vaguely reminded me of the sandstorm scenes in “The Mummy” and “Hildago.” Couple the winds with low visibility, construction, bumps in the road and all of that kind of thing, the approximate 6 hour drive was a bit “uncomfortable.”

Now, uncomfortable is a word medical professionals use when trying to hedge what a patient will feel. I generally say it with a ton of snark and sarcasm. The usage this time, for me, is no different. It didn’t hurt as if my head were treated as a midnight snack by Cerberus, but the weight sitting atop my shoulders felt as if professional bowlers were using it in a tournament.

It was so amazing pulling into the driveway, followed by the actual physical struggle against the wind to get into the house. (Yes, I’ve got Bob Seger’s “Against the Wind” playing in the background…)

Not sure who is happier I’m home – me or the pups chillaxing with me.

After warm and happy greetings by the actual dogs with whom I live, I accomplished two things with help from Hubs. Laundry. I have a load in the dryer and one in the washer. I also managed to unpack some other things and put the lighter stuff away. If nothing else, I was somewhat productive today. Yay me? But I also got to see Eldest and her fiancee as well as love on the grands, who are back home after an extended stay with their Auntie.

Anyway, it’s time for bed and meds are kicking in. It’s just a quick update for this saga I’m participating in. I love you all ❤ And I do mean that. Lot’s o’ love and deep heart-felt thanks.

Chronic Migraine, Food, Hotels, Life, Occipital Neuralgia, Surgery

The Noggin’ Chronicles Part 4

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Surgery Update: Day 4 / 04-03-23

As for yesterday… I didn’t wash my hair. It required too much energy. Housekeeping didn’t come. Hubs had to fetch towels and TP from the powers that be downstairs. Storms forecasted for the Metroplex weren’t bad. I could tell the shift of the barometric pressure, but didn’t get a full-blown, knock-me-on-my-ass migraine triggered by the ON nerves which have been decompressed and / or persuaded into a better position or removed entirely. 

Also last night (Sunday) the “pain” started kicking in as I think some of the blocks have started wearing off. I can tell where my head has been sliced and diced with something better than Ginsu knives. I will always have my best friends, but right now, ice, in all it’s frozen wonder, is rather at the top of the list of everything I cannot live without. 

My accomplishment for the day: I went a little longer without my pain meds this morning because I wanted to take a shower and I didn’t want to be woozy or anything on a slick surface. The hotel has dual shower heads and it was amazing. I mean, this was a real shower with warm water, smells good soap, a razor and baby shampoo. I’m paying for it now and resting with my head on ice, but it is so great to be “clean.” 

It’s 1628 CDT and poor Hubs has gone to fetch dinner. I don’t think he ate lunch. He wanted to try and get me out to go eat with some of the cousins who live in the Metroplex, but I can’t hold my head up that long. It feels as though a bowling ball rests on my shoulders. It makes me seriously wonder what the drive home will be like. I have the travel pillow that I’ve been using, but I seriously wonder if a small neck brace would be more beneficial. I’ve read from other surgical patients who when they had to return to work such a brace has helped. I suppose we’ll have to see. 

Dinner break. I’m the luckiest girl in the world. I didn’t think I was hungry, but man oh man… Hubs and I just scarfed down an In-N-Out burger and fries and it was so good. Muah! Kisses to the “chef.” This is one of the advantages to coming to the DFW Metroplex.

Yumminess that has to be experienced first-hand…

Tomorrow morning (Tuesday 04-04-23) I’m supposed to get the drain out of my head. I’ve always made jokes about my brain leaking out, but this actually looks like it’s happening. It’s so weird. It’s also a bit gross and it’s warm. It’s fascinating in a medical sense and I can’t help but think of all the things my mother would say about it and also want to know. She was the “Queen” of asking doctors questions about anything medical. She was always watching and learning things via television. Mom was also always trying to find out more about my conditions and continually offered suggestions, even bizarre things, if she thought it was “worth a try.” Admittedly, her help sometimes launched a disagreement about my treatment. She had her own neurological issues so there was commonality there, but oddly, she never really did much research into her own conditions. It’s like she got the diagnoses and gave up the fight, just accepting life was what it was going to be. That’s something that’s hard to understand, but we all have our own ways of approaching the harder things in life.  

It should be obvious, but I have thought about her quite a bit as she wasn’t here to ask what she thought about the procedure or the pros/cons. I’ve also had a few flash-backs while doling out my own daily meds and the similarities in how she used to do it with the way I do it is creepy, not in a bad way, but more in a “concerned I have become my mother” kind of way. 

Irrespective, the drain is coming out tomorrow come hell or high water. It’s probably going to hurt a bit, but hopefully nothing like the one the doctor pulled from my right knee. He gave me an “extra” hit of morphine before he did it and told me it was going to hurt. He didn’t lie. I’ll remember that particular experience until I die. I think my scream echoing through the hospital still haunts the halls. 

I suppose I should put this down and make the valiant effort to get some sleep before what appears to be a very long day tomorrow. Getting up “early”, eating something healthy, the to/from the doctor, driving about 6 hours to home. It will be an interesting test of my spirit, which needs to fight the good fight and win the race. It’s now 2122 CDT and I think a likely stopping point for the day. 

Chronic Migraine, Hotels, Occipital Neuralgia, Shopping, Surgery

The Noggin’ Chronicles Part 2

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Journaled 04-01-23

I don’t know if you guys want or care to read about these adventures of mine, but here I am nonetheless. I’d honestly rather be at home, but the hotel isn’t bad. We are staying at the SpringHill Suites by Marriott off the Northwest Highway. This was a good decision on my part. I’m not crazy about the part of town we are in – not that I’ve really gotten out, but I think this hotel offers the amenities that we need for the stay. At least it’s pretty much the epitome of quiet, which helps this abused head of mine. 

I can’t say enough amazing things about my poor hubby who’s waiting on me like I’m the queen or something. He is also keeping me in line – making me get up regularly and walk laps around the hotel suite. So I walk from the bay window to the door and back again. It sucks, but he’s right. 

The view from the bay window toward the hotel room door. The room is divided by an actual door between the bed/bath area and the “living” area.

Ooooh… he also helped me get my first shower since Wednesday morning.  I still cannot wash my hair ( or what’s left of it,) but at least I smell like a human and have clean jammies on. I’m also utterly exhausted by all the moving around. However, the shower was indeed worth it. 

A few observations: 1) I can turn my head to the right side a little bit and to the left a bit more. You have no idea how many times a day you turn your head until you cannot. 2) My head is heavy. Today I’m really feeling the “aftermath” of the surgery and holding my head up takes more effort than I like. I’m particularly grateful for the travel pillow as it helps to some degree. It’s also handy for keeping ice packs in place. 3) You have no idea how many times you have to look down, reach down or do anything “down” until you cannot. It’s entirely stupid not to be able to bend down to pick something off the floor. However, this is a strict instruction because I cannot risk raising the blood pressure in my head. I was told this multiple times and it’s also written on every surgical instruction thingy I’ve received. I accidentally reached down once to pick up something off the floor. That’s officially a hard “Nope” for me. 

Pic Courtesy Carlos Obrien
It’s really a long way down to the ground, especially if you aren’t supposed to “go there.”

I’m also supposed to take my BP every 12 hours, but I don’t have a cuff or anything. I didn’t know I was going to need one until after surgery otherwise I would have brought one down. (However, my BP normally runs low so I’m not too worried.) I honestly don’t see the point of buying one at this particular point.  Hubs actually went to the Walmart near the hotel right after I was released from the hospital. Not a one. They did actually have a thermometer, another thing I could have brought from home had I known, but I have to make sure I’m not running a fever as well. (So far, so good.)

That specific Walmart had an unusually  crummy selection of clothing, but I can’t complain. Why? Hubs bought me the MOST comfy jammies on the face of the earth. I think I need a few more pairs. (Just sayin’.) Unfortunately,  the reality of this situation is I’m actually going to have to buy a few more things to make healing from surgery easier. I should have taken to heart the advise from others who have gone through this surgery with more urgency, but you know me… I apparently like to learn things the hard way. 

Side note: You may not know this about me, but fact: I deplore shopping for clothes and shoes, evidenced by wearing the same things repeatedly whether they “look good” or not. (This is also part of the problem with finding something for Eldest’s wedding, an entirely different beast, but suffice it to say, I hate shopping for clothes.) This really should be it’s own post… I digressed. Truly sorry.

Unfortunately, Eldest and Youngest are bearing the brunt of Hubs and I being gone. I didn’t realize we’d be down here so long. I thought I’d be back at home in my own bed by now, but, their plans have been completely interrupted by this mayhem. Again, had I known…. 

I also wanted to take the time to say a most sincere thank you for the prayers and the encouraging words, text messages and memes that have lifted my spirits. There’s no possible way I can every repay that kind of love and support, but it has meant the world to me and by extension, Hubs. 

Now it’s time to eat some more soup and try to get some rest in. I did a bit much today, but I’ll figure it all out at some point. Much love ❤ 

Chronic Migraine, Illness, Occipital Neuralgia, Surgery

The Noggin’ Chronicles – Part 1

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Surgery 03-30-23 & Post-Op 03-31-23

DISCLAIMER: GRAPHIC PHOTOGRAPH AHEAD

The Background: I work 4 days a week and the Friday before surgery, it really finally dawned on me that I was going to be “out” for the near future. I love my job and I love the guys I work with. I also “know” the guys I work with and I had really buckled down to get things prepared so I wouldn’t come back to work facing apocalyptic aftermath. Saturday, Sunday and Monday, I was rushing around trying to get errands done and laundry finished. None if it really was as the nerves started kicking in and I spent half my time in an ON flare laying in bed or having my own craptastic time in the loo. Tuesday, I got as much of the stuff at the office buckled down as I could, while still dealing with a nervous stomach, and then left the office knowing good and well there was stuff I was just going to have to let go. Wednesday morning, the stomach was no better and I was on day 6 or 7 of a running migraine. I packed for the trip, ingested medication for my stomach and then prayed. Hubs and I made it to Dallas, got into a small hotel suite and then buckled down for the procedure and recovery to come.

Surgery was scheduled at 0700 CDT on 03-30-23. I had to be at the William P Clements hospital at 0500 CDT. The hotel was less than 15 minutes away so I wasn’t overly worried about “being late.” So we were up before the butt=crack of dawn. Yes. I wore my jammy bottoms and a button down shirt because I was advised that I couldn’t wear anything that went over the head. (It makes sense after the fact.) So, picture me in a pink button down, navy blue pajama bottoms with Eeyore on them, pink socks and tennis shoes. I am sure I made for quite the fashion icon, but it was comfy so there’s that.

From my journal: So. Dr. Amirlak and the entire surgical team at UT Southwestern in Dallas met with me in pre-op. Dr. Amirlak is awesome and we discussed the options for the surgery and we agreed to with the more conservative methods. We can always go back in if we need to. For the next 3 weeks I can’t do a whole heck of a lot. After that, I should be able to do more.

The surgery went longer than expected and was about 3 hours. Hubs briefed me when I was in the recovery room, but I didn’t retain much to be honest. Dr. Amirlak told him there were veins wrapped around a nerve on the right side. I’m assuming it’s the greater occipital nerve. He also told me Dr. Amirlak decompressed and added some “stuff” (can’t remember what it’s called) as a cushion and buffer. Based on what Hubs said, Dr. Amirlak did the same with the lesser occipital nerve. He yanked the lower 3rd nerves on both sides. We agreed not to do the “big” surgery on the left side. I was hoping to go home tomorrow, but I don’t know. There is also a “drain” in the back of my head. I’m apparently now “Borg.”I think it’s time for some rest. My head hurts and I probably shouldn’t be worrying about the Chronicles at the moment. Follow-up visit tomorrow at 1300 CDT. G’Night.

I am Borg.

It’s the middle of the night and I can’t sleep because I can’t get comfy. I did want to write a few things that I remembered. Before surgery I made a Hodgepodge of Tunes playlist on Spotify for surgery. I asked Hubs to play it and the first song in the recovery room is Queen’s “The Show Must Go On.” Talk about irony of ironies. I couldn’t make that up if I tried. Secondarily, because the surgery took longer than expected, it also meant it took me longer coming out of the anesthesia. I do remember they had to keep telling me to breathe. I kept thinking I was breathing, but maybe not? I’m not sure what to make of that. Anyway… going to try to sleep again.

The next day: The follow-up visit was interesting. Two curious tidbits: 1) Dr. Amirlak (or more likely his team) shaved the back of my head while it was up in a very messy bun. So when I took the bun down and attempted to brush out the mop, a crap-ton of hair came with the brush. Needless to say, I freaked the eff out.  2) Apparently I have a birthmark on my neck around the hairline. The doctor said that it leans toward the side with the massive problems and he’s seen kind of similar birthmarks on patients on the sides where the patient has the worst ON. He couldn’t provide a logical reason for any the possible correlation. But I thought that it was kinda nifty. (And NO idea I even had a birthmark there because of my really thick hair … which is no longer there.)

This is a picture Hubs took of my “messy bun” when it was let down. Why does it look like I have dreadlocks? I was afraid to brush it out.
I started brushing my hair and this is what came out with the “Wet” brush. Talk about freaked out!

I was able to ask a few questions and I asked for, and received, a copy of the post-operative notes. I figure this will actually answer some of the things I’m dying to know. Plus having a copy for my “records” is a good thing.

On the downside of things, yes, the surgical pain is still there. Yes, my head is numb in places which feel really weird. No I cannot go home today. Sigh… the output on the drain has to be less than 20 ml in 24 hours. Since today is Friday, I’m going to be stuck here until at least Monday. That’s gonna cause a kink in the plans the entire family has made, let alone my wallet. Ugh.

Additionally, Hubs had to go out and get me some more clothes because I didn’t know we were staying longer and I didn’t bring enough. He hasn’t bought me clothes (other than the Amazon wish list) in years and he did a good job.  2) Icepacks are my new best friend. 3) I bought a travel pillow in Amarillo on the way out of town. Best purchase in a long while. 4) I have zero energy. But I’ve been doing my best to get up and walk a bit. Last thing I need are blood clots or something. 

Next goals are meds, sleep and a shower. Then after two more days I can actually wash my hair. Yay!!!! And last, but most certainly not least, I have to give major props to Hubs who has stood beside me through thick and thin. This is surgery number 9 so we’ve been around the block a few times and I couldn’t ask for a better man to be my my side. I’m richly blessed.

Chronic Migraine, Health & Fitness, Illness, Life, Occipital Neuralgia

Series Introduction: “The Noggin’ Chronicles”

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Photo Courtesy of: pexels-hải-nguy�n-14312400

Unfortunately, the image above represents millions of migraine sufferers around the world. However, if this was a real migraine sufferer, you’d likely see them in a room darkened with blackout drapes and an assortment of things within arms reach so the migraineur doesn’t have to move too much. (Getting off the floor with a migraine is a different level of ugly.)

This initial series post will be fairly long, but I wanted to explain what’s been going on medically, decisions that have been made and the outcomes as I know them. This is separate from the other types of blog posts that I’ll be doing, but I think this is important.

It’s been no secret I have struggled and fought with migraines over the past few decades. I have been on over 50 medicine / medicine combinations and nothing has “worked” for very long . During the course of my neurological issues, I was subsequently found to have Occipital Neuralgia (ON) which has been a primary trigger for at least the past 6-7 years, only said because that’s when the official diagnoses was made by by my neurologist. The condition has been getting progressively worse, but I’ll get to that.

According to Johns Hopkins, “True isolated occipital neuralgia is actually quite rare. However, many other types of headaches —especially migraines — can predominantly or repeatedly involve the back of the head on one particular side, inflaming the greater occipital nerve on the involved side and causing confusion as to the actual diagnosis.” Also, according to both the American Migraine Foundation and the Barrow Neurological Institute, “Occipital neuralgia is relatively rare, affecting an estimated 3.2 per 100,000 people per year.” This means there are about 250,000 people worldwide with this condition. In short, “rare.”

So what is it? I call it Cerberus who lives in my head, is chained to my neck and chews on whatever cranial structure is nearby (Cerbie for short..). But technically, Occipital Neuralgia is when one or more of the occipital nerve roots (which are located at the top of the spinal cord) are inflamed or irritated. The majority of the time, ON occurs when the largest of the nerves, the greater occipital nerve (GON), is affected. If the occipital nerves are already inflamed or irritated, touching the back of my head or neck could trigger ON. Moving my head in a certain direction can cause a flare. Even brushing my hair could sometimes trigger a “brief” and intense headache type pain that would magically transform into a hell of a migraine.

Given the “rarity” of the condition, it’s not surprising it took so many years for an official diagnosis. And yes, I have had doctors actually ask me if it was a “real” diagnoses because the condition is so rare. Frustrating, yes, but not surprising. The actual frustration came in trying to get a proper treatment for the ON.

I have seen my share of medical personnel: primary doc, neurologists, chiropractors and pain management docs. I have had all sorts of procedures ranging from nerve blocks to spinal epidural injections in my neck. I have done physical therapy, chiropractic adjustments, acupressure, acupuncture, dry needling, massage, a zillion meds including Botox, the CGRP’s… and nothing was helping.

The condition has been progressively getting worse. I was really trying to limit the amount of time I missed from work, but there were some months that were unbelievably hard to bear. So while pressing myself to go to work, I sacrificed family time and pretty much anything that would be considered “living.” Sure, I was existing, but “life” wasn’t an experience. I felt like a mannequin in a department store window watching the world go by.

So, well over a year ago I started doing research on the “migraine surgery.” I read the articles in various medical publications by Dr. Peled, Dr. Guyuron et others. I also read the books they published. In addition to that, it’s been quite a while since the surgery was pioneered and there have been some longer term outcomes that have been favorable. So the research continued for about six months until I felt comfortable enough in attempting to have the surgery. I didn’t know if I was a good candidate, but I needed to start down the path nonetheless.

There are a few doctors across the country who perform the surgery, but the closest to me is Dr. Amirlak at UT Southwestern in Dallas. I did a bit of research on him and found him to be a competent surgeon. Additionally, I have dealt quite a bit with UTSW and there’s no where else I would want to receive my, shall we say, “more advanced” medical care. All of the medical personnel have always been “tops” in my books.

So I was able to book an appointment and saw Dr. Amirlak the first time in October 2022 after filling out a zillion pages of paperwork / questions etc.. I liked him immediately. He took his time during the consultation, asked questions I hadn’t thought about and poked and prodded my head, which wasn’t painful, but wasn’t pleasant either. Hubs was on hand and he was not ignored during the visit, which I can’t stand. Nor can I stand it when I am the patient and I’m being ignored, but I digress. Dr. Amirlak advised he thought I would be a good candidate for surgery. Then came the wait.

And we waited.

Annnnnd we waited.

The big hold-up was insurance approval. I was willing to pay out of pocket, but this surgery being covered by insurance would be a huge help. Insurance approves <1% of cases. However, with my lengthy medical history and all of the other documentation….

We waited.

And still we waited.

January turned into February and I finally got the news that insurance had approved the procedure along with the surgery date – March 30th, 2023.

I’m writing this a little over a week out from surgery, but obviously I’m alive and this series will be periodic updates as to “how things are going.” Right now though, I’d say things are looking better.

So onto the show…. Welcome to The Noggin Chronicles ❤ Celeste

Life

Health, Healing and Hippos

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Apologies for the length, but I wanted to share some of my medical story. I pray it will help someone today.

My first “migraines” were all abdominal and appeared at 14 along with “womanhood.” I missed weeks of school at a time and I couldn’t explain that the pain was more than “cramps.” (Enter 4-5 years of naproxen.)

My first “head” migraine hit in college and I was so sick a dear friend basically picked me up off the floor at the radio station and took me to the ER where they admitted me. I really felt like I was going to die. The pain was 10/10 and I was 🤮🤮🤮 non-freaking-stop. They did an MRI or CT scan and the entire right hemisphere of my brain was lit up like a Christmas tree. That I remember. There’s other stuff I don’t, but I was there for 2 days. They loaded me with fluids and pain meds and dad brought me home where I had the weirdest “morphine dreams” ever.

Example (embarrassingly admitted, but still makes me laugh…) Jamey Karr, Greg Wheeler, David Le Blanc, David Kilburn, Paige Burrough Ballard, Lani Clark, Brian Frank, Mike, Carla, Tommy, and a few others were all eating out at Blackstone’s. But it was like a scene out of Tombstone and the guys were all in western wear. Paige, Lani, Carla and I were having a discussion about men in chaps.😜Next thing I know they are riding off into the Panhandle sunset on pink hippos. That’s right. Pink hippos. And even now the more I think about it, the funnier it gets…

Phew… back to reality.

For almost a decade and after two kids, I was still migraine free. Those were pretty decent years (aside from female problems that I no longer contend with and IBS, which I do.) Then in 1998 🤯 official diagnosis. I’ve had migraines ever since, but they’ve morphed and changed over time.

I have been on and off preventive meds for years. I even had a couple of years that were just manageable headaches. (But as a ⚠️ WARNING ⚠️ —do NOT take Excedrine migraine heavily… that ended up with a very painful bowel bleed and a lengthy hospital stay because of it. Excessive NSAID use is no joke.)
Then in 2015 🤯 I was diagnosed with Occipital Neuralgia (which I’d never heard of, but have become nearly an expert) and Pudendal Neuralgia (I’m not going into this one.) Apparently my entire CNS is a mess. Fast forward til last week and a half…

I had 4 ER visits in May and June. The pain was intolerable and like many other chronic pain patients, I deal with some depression. I was literally down and out on the 4th visit. That last bill was a whopper, but the ER doc on call was actually a pain management doctor who gave me a couple of nerve blocks I hadn’t had before (and I’ve had more than a few.) My migraine dropped from a 7-8 to a 5 instantly and was at a 4 at discharge. It stayed a 4 and after a good nights’ sleep (something new) I woke up with no migraine or ON pain. I seriously thought I was out of my mind. I hadn’t had a true pain-free day in months (years???)

So… I’m now seeing a pain management specialist, finding a new neurologist here in town (not a fan of the one assigned) and throwing in alt “meds” that help – vitamins, essential oils, massage and going to go to a chiropractor when I get the all clear from the tests and nerve blocks that will be done.

I know weather triggers the ON and migraines – as does lack of sleep. I have certain foods I’ve totally cut from my diet as well. Those are an almost instant reaction. (One of the many reasons I don’t like to go out to eat is I like to know what’s in my food and the consequences are truly dire if I don’t stick to a pretty regimented diet.)

I wanted to share this because I don’t want anyone to give up on ANY problems they have – whether mental, physical or spiritual. There ARE answers out there and you may need a multi-disciplined approach. The doctor I saw last week was “feeling around” my head and neck. I had lost about 75% of lateral movement (didn’t notice because of constant pain) and my head and neck were really swollen. So… 4 new meds (a couple are just short term anti-inflammatory etc) and my dear hubby could actually see some curve in my neck again.

There are many options out there, but research, the right doctor and patience are huge.

I’m broken, but not shattered, and while it sounds hokey to some, I really feel like God is helping to mend the cracks and imperfections in this mortal shell. There have been many days I’ve asked myself if this whole thing is actually a test from God (think modern day Job.) I don’t know. But what I do know is in casting the burden to Him and sharing a bit of my story I hope I might just help someone else. I feel for the first time in years that I’m in a path to victory and to God alone will go the glory for bringing the people into my life that even just by being a friend is healing to me. Thank you for being there. Pink hippos…

Rollin’, Rollin’, Rollin’…