The Vacation Aftermath

Please note this post contains affiliate links from which I may earn a commission. It was last updated 10/30/2020.

Pictured above: a portion of the Mackinac Bridge taken by David Curtis from St. Ignace. We had to travel it twice. It’s 5 miles long and the world’s 5th longest suspension bridge. Have I mentioned I have a bridge phobia?

As I write this, I’m waiting for the alarm clock beside my husband to tell me it’s time to get out of bed and prepare for my first lumbar puncture (spinal tap). I took a late appointment, so I should have known I’d sleep no later than 4 in the morning. In reality, I’m doing pretty good if I manage to make it to 4. That’s why I went to sleep at 8pm, an hour earlier  than my usual bedtime. People laugh about my toddler bedtime, but it keeps me from coming apart at the seams. Join me in my distraction; Part two of my vacation saga, also known as the aftermath.

Vacation brought to an abrupt halt, I lay in bed the whole weekend while my husband did the grueling 24 hour drive in less than 36 hours roundtrip. I was not eating bon-bons. I was resting and sleeping and doing my best to stay occupied, mostly through social media:

When David arrived home Sunday evening, we quickly fell asleep and stayed in bed until my doctors appointment, the next day.

We made our way into the doctor’s office Monday afternoon, David playing porter and nursemaid and me in my used, ill-fitting wheelchair. Dr. B is an incredibly compassionate and caring person with a keen mind. He lost his mother to cancer as a young man, a fact he may not share with everyone, but I see it as a motivating factor to his choice of career and level of compassion. Often, I think he treats his patients with the same loving care he wanted her to receive.

He’s the perfect combination of intelligence, curiosity and concern. He listens. He thinks. He’s not always the best at follow-through, but if I have to drop an extra email or call to get things done with him, I am willing. He’s my dream doctor in every other way. He’s even a pleasure to look at. Pinch me.

We go over the dystonic crisis, a play by play. I show him the article and photograph. “David said I looked exactly like her.” He nods his confirmation.

A woman in dystonic Crisis Seizes on a gurney, from Cognitive and Psychopathological Aspects of Ehlers-Danlos Syndrome

We discussed my last workup and I present him with the results. My neurological records in my “hospital bag” go with me every appointment now.

Dr. B decides he doesn’t want to handle this alone. “We have a world renowned head specialist. Let’s utilize him. I’ll talk with him and give you a call.”

We decided since I already have a standing script for baclofen 3x a day, as needed, that I should try taking it regularly it to see if it prevented future attacks. After all, I’d been taking it regularly to ween myself from Topomax and wouldn’t you know I discontinued it just a couple of weeks before.

While waiting for the doctor to call back with insights from his discussion, I continued to shoot videos of the progression of my flare, which was clearing up a bit faster than normal because I began to supplement my acetylcholine production by taking  acetyl-l-carnitinethiamine and huperzine A.

Unfortunately, while supplementing my acetylcholine levels and other things I was doing to help pull me out of my flare was helping with just about everything except for the pressure in my head, which seemed to be growing to monstrous proportions.

A week goes by and I hear nothing. I call as agreed, to remind Dr. B and let him know I’ve had 2 more very brief and mild attacks of dystonia and my head pressure is unchanged. He informs me they’ve been playing office tag and he’ll try again. I decide to call Dr. M, world renowned head specialist and schedule an appointment myself. I am late for my checkup after all and I have less to do than my busy practitioner. They get me in within two weeks, almost unheard of.

And then what I thought was my IC began acting up:

Only it turns out it wasn’t my IC, but of course I don’t know that until the pain is completely out of control and when I wipe, the toilet paper comes away red with blood. Instead of calling the doctor and going in yet again, I decide to use the amoxicillin script the dentist gave me after my last pulled tooth that I never used and add some high dose vitamin C on for good measure.

I hear back from Dr. B a few days later and he tells me they want to stay the course with the baclofen for now and maybe I should go back to Topomax. In my head, I’m screaming, No! My mouth chooses to explain the hell I’ve finally escaped by weaning off of it, sounding much saner than I feel.

“It’s fine,” I end with. “I decided to go ahead and make an appointment since I was due for a checkup anyway. I’ll get it all worked out with him.”

More Bad Tidings at the Dentist

Before my appointment with Dr. M, I have to get through some more dental work. I’m angry about this dental work, as I get regular checkups and cleanings every 6 months and yet, I switch dentists and mysteriously I’ve developed three cavities all at once? What was my old dentist waiting for? For them to get bad enough that I’d have to pull that tooth to? What in the hell was my old dentist doing? Huffing laughing gas and drawing cartoons on my xrays? This isn’t the first problem I’ve had with my old dentist. After this latest, I’m strongly considering suing him.

My mouth is a crumbling jigsaw puzzle and I have no need for help from lazy or incompetent dentists to lose my teeth. On my right side, I have the very first molars on top and bottom, but the molars that belong next to them are long gone. On my left, I have only the top molars. Somehow I’ve managed to keep the rest, but it’s a battle I’ve been fighting for over a decade. When you have hypermobile teeth, gum disease is practically inevitable. Throw in my cracking, collagen deficient teeth and a 33 year love affair with cigarettes, and you have my mouth. When Dr. A drills my lower right molar for repair, he finds the decay has gone all the way to the root. The one tooth I depend on most to chew.

Dr. A stops to explain the situation and explains that they’ll pack it with some sort of material and put the filling over it, but there’s a chance that the nerve won’t tolerate it. In that case, all they can do is a root canal or extraction.I explain it will have to be an extraction, but hope against hope it will be okay because it’s all I have left to chew within the sides and Dr. A just explained to me why dentures would be torture for me.

On increasing neurological symptoms with high pressure head pain in one of a few very bad weeks for this trifecta zebra with EDS, MCAS, POTS, Dystonia, migraine, brain fog and more.

No such luck. The pain in this tooth is already way worse than the other tooth they fixed, but I’m determined to give it a chance, so I stick with it, eating (mostly unapproved) soft foods and going hungry far more often than I like. The pain starts waking me at night, despite copious use of advil and I cry every time I have to eat, drink or breathe through my mouth.

A week’s gone by. I phone the dentist to cry uncle. I explain everything to the receptionist, who in turn tells me Dr. A is on vacation and he left orders for me, but they’re for an endodontist.

“I can’t afford an endo. I have to do extraction.”

She tells me she can’t do anything. I have to have a referral, but only the doctor can write it. When I become upset, she tells me it’s “not her fault” and I should go to an urgent dental care. I hang up on her and her bad advice, telling myself I will apologize at my next visit for being rude.

There isn’t an urgent dentist for 35 miles and I can’t fathom what they’ll do for me since I’ve already been told it has to be extracted surgically, so I ignore the receptionist’s advice and call Dr. S, who handled my last extraction. The receptionist tells me neither Dr. S or my insurance require a referral, but Dr. S can’t consult until the 22nd, 3 weeks from now. I take the appointment anyway.

The Head Pain Specialist

A few days later at Dr. M’s, I stupidly walk into the elevator bank without my mask on and get hit with a wall of body spray so thick, I can hardly finish my breath. Slapping my mask on immediately, I’m an oxygen deprived mass of hives, urticaria and welts by the time I reach the doctor’s office:

Dr. M comes in not looking or behaving much like himself and I inquire about his health. “A cold,” he says and I balk momentarily, deciding he’s probably not a bad judge of whether or not he’s contagious, but regret having pulled my mask down.

We discuss my dystonic crisis and I tell him I was in a huge flare at the time.

“What type of flare?”

This causes me to pause and consider my answer. “MCAS, I guess, though it got everything going. I tried to take a long weekend to the upper peninsula.” I said, feeling the blood warm my face as he chuckled at my foolishness.

“Went well for you, didn’t it?”

“Yes, grand,” I laughed, squinting at the pain it caused. I filled him in with the highlights.

“What concerns me, is that I haven’t had one of these attacks in over a year and this one was just so long and brutal. The baclofen is doing its job, it seems, but I have other concerns. The pressure in my head is intense and only seems to keep growing. I get awful shooting pain straight from the top of my head sometimes when I’m upright, while others it hurts in the back or front, above my eyes, which frankly feel like they’re going to burst. Dr. B checked my ears and said they were clear, but they hurt. It feels like they’re going to burst sometimes and my hearing gets muffled and my vision goes blurry or dark.”

“So it’s getting worse?”

“Apparently so.”

“You know the resolution is probably a spinal tap. We’ve been discussing that. Is it time?”

“I think it’s time,” I responded, reluctant, yet resolute.

We discussed what we were hoping to achieve, risks and possible outcomes and I left his office with orders in hand, hardly believing I’d agreed to another risky operation.

Now that the pressure in my head is so great, I cannot be on my feet without being overwhelmed by dizziness and shooting pain. In fact, feeling lightheaded and fuzzy has become a permanent state that’s unrelieved in any position. Even sitting up isn’t possible and every time I begin working, I pay dearly because although I’m still working in a recliner, it’s my husband’s and it’s harder to stay in that partially reclined sweet spot that works so well for my head.

In addition, I’ve developed a pattern that looks suspiciously like sundowner’s; by late afternoon my husband often has to tell me the same thing multiple times. I reshare things on social media because I have no recall of having shared them the first time. This could be in part that I’m not sleeping because of the pain, but the pattern is new and concerning.

When I scheduled my LP, the scheduler naturally told me no NSAIDS for 3 days prior. This wasn’t a big deal to me until I thought about the fact that I will be having my LP while this broken tooth is still in my head. A broken tooth that causes me the most pain when I’m flat on my back.

For my LP, I have to lay on my back, not moving except to go to the bathroom for at least 48 hours. It’s only 24 hours, typically but we zebras heal slow. Even an hour on my back has me writhing in pain and cursing my own existence. I’m not sure how I will make it through.

I went to the dentist, under the guise of filling the 3rd bad tooth:

Sharp instruments or no, we couldn’t come up with anything I could tolerate that Dr. A can prescribe. I have anaphylaxis with codeine and everything but hydromorphone and Demerol turn me into a spectacular fountain of bodily ick from every orifice. “I’m so sorry I can’t solve for tomorrow,” he said, “and it won’t last, but I could numb your jaw right now so you can at least get some rest.”

I took him up on his offer and cashed it in on a good night’s sleep.
When the procedure is through and I have come out on the other side of healing, I will write the post which describes it all from finish to end. Today, on the morning of my surgery, for which I must wait on pins and needles, I cannot dwell on them.

Exactly two weeks after the appointment with the head pain specialist, I am full to bursting with information on the lumbar puncture procedure, having read everything I could get my hands on and asking everyone I know to ask how they experienced what I’m about to. I’ve even written my goodbyes, just in case.

My angiogram caused great fear in me and I was convinced letting them strap me to that chair would be my last act. I don’t quite have that fear this time, but my feelings haven’t changed much. I am convinced that in a country where 250 people a day die to medical error, that I am forever one procedure away from death if my eroding soft tissues don’t kill me first.

Somehow I’ve made my peace with it. I don’t relish leaving this world behind, but I don’t really fear it, either, except that it is unknown to me. I simply cannot fathom existing in this pain-filled life any longer than I have to be. If I go, do not cry for me, but rejoice for me that my pain has ended.

Update: Yes, yes, you can call me a drama queen now that I’ve had my first uneventful LP. My next post on lumbar punctures, csf leaks and intracranial hypertension, including the details of my own experiences and new diagnoses, will be the topic of one of my upcoming posts, but I still have a ways to go before I know how my own story turns out. Just know the procedure went well and I’ll be sharing more soon. As always, thanks for reading, supporting and commenting!

There's nothing quite like a high pressure headache due to IIH, Chiari Malformation and/or CSF leak, unless you add to it one of the most excruciating dental problems there are, a nice MCAS flare, and oh yes, let's throw in a UTI (bladder infection) while we're at it. Why not? I'm zebra strong and this is just another month in the life of a trifecta zebra with EDS, MCAS, POTS, Dystonia, Migraine, Fibromyalgia, ME/CFS, gastroparesis and others.

4 thoughts on “The Vacation Aftermath

  1. Oh this is so shitty, I’m so sorry. I’m not really sure where to start, but I’m wishing I’d waited and emailed you fully after reading this. Or maybe before, to wish you luck with the lumbar. I was getting all panicky at the bottom of this post, reading about the angiogram and the procedure.. so you’ve had it done, and it went okay..? What happens next? Jeeees, I really, really hope you get some decent rest night after all of this.

    A nice trip to the upper peninsula, then come home, rest and chill out and think about all the lovely memories.. sounds so lovely in theory, doesn’t it?
    “We have a world renowned head specialist. Let’s utilize him” – that’s at least a smart idea and I was hoping it’d be the turning point towards things improving.. wishful thinking! The dentist is an awful bloody experience on its own, let alone with everything else you’ve been dealing with. Do you still smoke? Just out of curiosity (I’m also a smoker) What a nightmare with getting passed back and forth to have issues with dentists not being available and urgent dental care being so far away. Does any kind of health service ever, ever make it easier for patients?!

    Sending lots and lots of hugs your way  ♥
    Caz xxxxx

    Liked by 1 person

    1. I’m so sorry, my friend! I didn’t mean to make you panic and I should have emailed you last week as intended to let you know what was going on. I just flat out kept forgetting to fit it into that tiny window I’ve had where I feel well enough and can REMEMBER what it is I need to accomplish. I feel like the memory issues are getting better and I certainly hope so. I’ve shot you an email and answered some of your questions, but know I am doing well and things are coming right along. The post was written a few days ago and I am recuperating well. May have to go back for a top off (a blood patch), but we shall see! At any rate, it feels better than it did. Thanks so much for your concern and being such a fine friend. I’m so sorry you worried, if even for a few minutes. xx

      Liked by 1 person

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