Desperate Times and Tattoo Parlors

I’ve had the same two holes in my ears since I was in the first grade, and I rarely wear earrings in them anyway. In highschool, I wanted a bellybutton ring, but the idea was shot down by my parents. Later there was a phase where I wanted a butterfly tattoo on my lower back (cliche, I know), but both ideas lost their appeal by my 18th birthday. So I remained, for the most part, unadorned. Until two and a half weeks ago, when my minivan rolled up to Warlock’s Tattoo and Piercing.

Many of you have probably heard of the Daith Peircing that is meant to help with migraines. There isn’t any real science behind it, but when I was in the hospital a friend of mine got hers done and it provided her with such relief, so I asked one of the PAs who was treating me about it. He told me that about 90% of his patients (he used to work at a headache clinic) felt it helped. I later asked the NP who works alongside my Neurologist about it and she said something similar, about 80% of her patients who have it feel it is helpful.Now I know all about the placebo effect, and placebo can be one hell of a drug. It didn’t matter, I wanted it.

I went into Warlock’s initially just to chat. Immediately I fell so in love with the piercers and the beautiful jewelry they had choosen, I knew this is where I would eventually get it done. But we were about to hop a plane to Florida and I needed my MigraineX earplugs to survive the flight down in my current condition. (Also, I want to note that the peircers do not claim to heal any migraines, they had no data on how many clients had been helped or not.)

So the day we got home, while Chuck and the kids waited in the car, I got my right ear done, that’s the side Monster Migraine started on. It didn’t hurt nearly as bad as I thought it would!

I was hoping it would break the migraine I was in. Or just the bad cycle. Anything. But sadly it didn’t. It was a huge pain in the ass. It sucked to sleep on, it itched when it was starting to heal (full healing time, until it can be changed out and stop being cleaned, is 9 months FYI). It wasn’t working, I was still in pain, I was annoyed and disappointed, I wanted to get it out.

I showed it to the accuputurist, and he said I should have gotten both sides done. Well, shit. I didn’t want to wait the full 9 months, so once I could sleep on the already done side, I decided it was time to go ahead and get the left side over with. So once again my minivan and I headed to Warlock’s.

*Super cute sunglasses are Theraspecs – review coming soon :)*

Ignore those smiles, this side HURT. I about crawled off the table! But desperate times…

Here is the thing about chronic pain, especially when your doctor’s aren’t able to help you for the near future. You grasp at straws. At anything that might be able to provide you with relief. In the long run, I some cool piercings I never got during my pre-minivan years. Maybe they will help. Maybe they hit just the right spot to confuse my migraine, or maybe I’ll get a dose of placebo to help me through until mid May. Or maybe I’ll get nothing from this but the knowledge that I am doing absolutely everything I can safely do to help my migraines while I wait for the relief I pray the doctors can give me in May.

As always, I ask for prayers and good vibes. My pain level is fairly well managed if I don’t do anything. This is not a realistic or enjoyable way to live. My little family (the kids especially) is so ready to have Mom back in action. Chuck is doing a great job as super Dad, but something needs to give, and soon.

For more information on Warlock’s you can go to: https://www.warlocks-tattoo.com/

*A note: it took 2 weeks after the peircing before I felt ok to use my MigraineX ear plugs again. I am not suggesting this to anyone, as it could introduce germs to the area. I personally used alchohol wipes on the ear plugs and case prior to putting them into the freezer, and then super santizied my hands before inserting the plugs.

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Botox, and my favorite ENT

I talk a lot about Botox on here. The first time it was brought up as an option for me was in December. I went to my ENT, desperately asking him if I had a tongue-tie. See, I read on the internet (of course 🙄) that if you got your tongue-tie clipped, all of the muscles in your neck would relax. Maybe if all my muscles relaxed, I wouldn’t have the headaches anymore (this seemed like sound logic since my neuro at the time was having me take muscle relaxers 3 times a day.. though I still had the constant throbbing so I’m not exactly sure why I thought this would work better).

Once the poor guy figured out I was in there desperate about my headaches (and he was appalled by the amount I was having and the lack of action to recitify them by my then neuro), he said “I can give you Botox”. I was a little caught off guard, but very open to the idea. The ENT explained he started giving it to his wife for her migraines when their children were about the same age my kids are, and now he has a few patients he treats with it. So we filed the paperwork and crossed our fingers. If insurance covered it, great! If not, I knew I couldn’t self pay, because if I did that it would ruin my chances of ever getting insurance to cover it.

In the end my Botox claim was denied. It turns out they would prefer I fail different meds than the old neuro was giving me 🙄, and they really want Neurologists doing the injections. I was very bummed, mostly because I was in a lot of pain and ready to feel better now, and also because I felt like I wasted the entire fall on treatments that got me nowhere and nothing. But I was able to take that rejection letter into my current neruolgoist so he would know exactly what we needed to do to get it approved next time (seriously, y’all, pray it goes smoothly in May). I also made sure the New Neuro is specifically trained in giving Botox, because when I asked the ENT how he did it, he said I just point to where it hurts and he injects (this is not the standard Migraine Botox protocol).

But through this process I have learned so much about Doctor’s and PAs (I see more of the PAs and than doctors I feel like); they aren’t super human. They are people, just like us (only with more years of education under their belts in most cases). Some mesh better than others. I, specifically, need a physician who will listen to me, who will value what I have to say. Who will communicate with me. I know my body. I’m very in tune with it, and frankly I’m your best assesst and solving whatever mystery there is to it, so my opinion should matter. And I don’t take kindly to being shut down or belittled. I may not be a doctor, but I’m not an idiot. No patient should be left in the dark about their medical treatment or options simply because.

And that is why this ENT will forever be one of my favorite people (and he took out my tonsils, and that recovery was worse than my C-sections, so that says something), because he listened to me. He saw his patient in pain, grasping at internet straws, and tried to give her a solution.

Mixed feelings

I have so many feelings about this blog. On one hand, it’s so freeing to be able to speak about pain that I had kept close to my chest for so long. On the other hand, it’s exhausting (and those of you who aren’t chronic pain sufferers are probably very ready for this depressing saga to end)!

As soon as I made the switch from “forgotten mommy blog” to “all about migraines” I panicked; I do not want my migraines to be a part of my identity, is this blog setting me up for that? I understand that I will have a life long battle with migraines, that one pill, or even the Botox I am so looking forward to, won’t take them away completely. But I would sure love for them to be so few are far between that I am too busy to blog every day, or even every week! That my updates are barely there because my pain and condition are so well managed.

Right now I feel like I am missing out on life, specifically my children’s childhoods. My favorite saying about motherhood of young children has always been “the days are long, but the years are short”, well these days are extra long. Time is crawling. I want to be that crazy super mom again, always at the gym or having playdates, that’s when time would fly (except afternoons with no naps) and I need it to woosh by until I am better. But time isn’t doing that, so I have plenty of time to lay, and think, and blog, while my kids destroy the house.

The blog really has helped me so much. I feel a sense of purpose; By getting to review items (something I am deeply thankful for) that others aren’t sure about, or perhaps haven’t even heard of, I feel like I am doing something. I’m helping not just myself, but others too, find comfort during painful times. The ability to be vaguely productive during a time when I am not working, or able to do the vast majority of my nromal acitivites, (like supervising my children from a not horizontal position), has really helped me hang onto some of my self-worth. So thank you to everyone who takes the time to read these posts, and follows along with me on this journey I really wish I wasn’t on. When it comes down to it, I would rather be healed than a blogger. But until then, onward we blog.

Today I ask for prays and healing energy that my current migraine breaksm I would also ask that once it breaks the Topamax or Cefaly do their jobs by cutting down the migraines in half (by quality and severity). The Carolina Headache Institute said there is no reason I cannot start my Botox at my current Neurologist practice in May, so please pray that all goes smoothly with the doctors and the insurance approval for that.♥️

Exhaustion is a side effect of Migraines

I’ve already mentioned that, without listening to the words that I was saying, my Neurologist from this fall decided I had a Medication Overuse Headache ( which we already established was impossible). He also decided I had Tension Headaches (despite the throbbing nature, sensitivity to light and sound, digestive issues, vomiting and nausea, temperature intolerances, hot flashes, balance issues, extreme exhaustion, and tinnitus). I was certainly not suffering from one Intractable Migraine (insert all of the sarcasm), no I had MANY different issues. I needed many different expensive test. Many different expensive treatments. All of which he could help me with! But good news! I certainly only got migraines on occasion ( insert eye roll)! I didn’t even walk out of there with a Imitrex rx for when I got my occasional migraines. I had to call back and remind him I had two small kids and needed to function to keep them alive.

The Doctor told me to go off every medication I was already on ( he didn’t care what they were for, how long I had been on them, what they were treating) and give me a ton of low dose muscle relaxers to take at night, and when those didn’t help I was supposed tp take them 3 times a day. That didn’t help either, because it wasn’t a Tension headache. All they did was make it impossible for me to function, and increase that daytime exhaustion that was already an issue. And all this time I had that throb throb throb in my head…every second…every day.. He also gave me a blood pressure patch, Clonidine, that managed to make me the most depressed person in the world (the doctor was aware of my history of depression, the most recent being Postpartum and just months earlier I developed PMDD….expect a full post on being a chronic pain patient while having any sort of mental health issue soon) and provided me with zero relief from my migraine ( probably because it was already there). When I told my Doctor I simply could not stay on this medication (you know, the first thing they say to do on the symptoms if you notice a serious change in mood) he refused to replace it with something that could help, like Topamax, or another medication that was on the “Must be tried before Botox” list. Had I tried that sooner I would have been able to get Botox sooner, so I’m a little bitter. He did tell me about the Wonder Woman device I know own, but I am glad I waited, because at the time it did not have the function that actually treats the pain, just the preventative function – which the company has told me will do me no good until I can get out of this Chronic Intractable Migraine stage of my life.

On to the tests; I agreed to blood work ( normal) the MRI, with and without contrast (normal). I did this standing on a moving board test (for balance), which I every so slightly failed, but so does basically everyone I later read. After much badgering I agreed to the sleep study, even though I didn’t show any signs of sleep apnea for the record. This doctor was ADAMANT that daytime tiredness was NOT NORMAL, I disagreed. At the time Flip was still waking me up 3+ times a night, I think anyone would be tired in that situation. Also, every mother I know is tired. Hell, every parent I know is tired. He was also sure I was grinding my way through the night, though my husband and a phone recording app disagreed (TMJ at work?) and a sleep study would prove it. When the results of the sleep study came back positively normal ( disclaimer, I did get my giant tonsils out first, so they could have been obstructing airflow, but the headaches persisted) the Neuro was clearly frazzled. He said I needed to do a daytime sleep study because I could have Narcolepsy, despite again, having zero symptoms besides daytime tiredness. When I said I wasn’t going to do that, he threw his hands up and said there was nothing more he could do for me, and that he would see me in 6 months for medication management – despite the fact that I STILL had the same issue I went to him to fix.

Look, I’m sure this doctor is a fine guy. But he refused to listen to my words. He took one look at me and knew I was some pill popping suburban housewife with untreated anxiety and sleep apnea, and apparently a balance issue. Nothing I could say to him was going to convince him otherwise. My symptoms didn’t matter. My personal history didn’t matter. My feelings didn’t matter.

I am frustrated, at him, but also at myself for not walking my ass out of that practice much sooner. I should have never gone back after that first appointment. I cannot go back and change what was, but I have learned to be more proactive when it comes to my interactions with my physicians (or well, I’m trying). I am thankful I have a appointment with the Carolina Headache Institute in June. I am thankful that I (knock on ALL THE WOOD) should be receiving my first round of Botox in May. It has been a hell of a road but relief seems to be in sight. So this week in the Prayers and Vibes requests, I ask for this:

  • my current Migraine to break
  • to not be hit with back to back migraines when it does
  • the Cefaly device to continue to provide me with some relief
  • Topamax to magically start working
  • Botox to get approved in May
  • the Carolina Headache Institute to have an opening for me sooner
  • for me to be physically able to start to take back over my responsibilities in the home, without making my Migraine worse, so that it doesn’t all fall on Chuck

*Ignore the tape, the PT taught me to use it to keep the electrodes on for my Tens unit and it’s how I’m rolling with the Cefaly now too. Both the corrector and Cefaly get used before dropoff because even when mom is down, she’s still got to multitask 😂*

I also wanted to take a quick minute to do an update on my Posture Corrector. I’ll admit that because of all of the time I have spent in bed lately, I have not been able to follow the protocol exactly ( I don’t think the nap I took in it yesterday did much for the muscle memory it is trying to build), but I do feel that it is helping. I try to wear it when I am driving, working at my computer, or reading, because those are times I know I hunch. Overall, it is a very inexpensive way to improve your posture, so if it’s something you have been thinking about doing, I would say to go for it. My original review is still up, and here is the link to the item https://www.amazon.com/gp/product/B0719WMCT1/ref=oh_aui_search_detailpage?ie=UTF8&psc=1

*Reminder that I got this item for free in return for my honest review*

40% off Temple Massager

The code is here! The code is here! Joe is the best y’all!! I told him I had some friends and followers who were really interested in his product and he offered up a 40% off discount for y’all! I cannot say enough good things about him or his company!! And the product itself (which has been used for soldiers in combat, and at Walter Reed) has helped me so much! There is a 60 money back guarantee if you don’t like it, but if you are like me, you will probably want to sleep beside it ♥️

To redeem the code just go to http://www.templemassager.com/shop and enter the code min18 – and you will get you 40% off your entire order!

I really hope y’all love this product as much as I do!!

“Do you have a headache right now?”

Yes. Always. Except for a combined 6 hours since I have left the hospital. It is a constant throb. It gets stronger throughout the day. It flares up with stress, with movement, with lack of food or water. It is always there, threatening to get worse. It controls me.

My life revolves around it, this Stanger-Things Monster that has made it’s way, far too quickly, back into my body. Or maybe it never really left?

So I lay. I drink the water. I eat the food, though not enough (it has no appeal, I have no taste or appetite taste thanks to the medicine). I use every tool in my toolbox to keep it controlled. To keep it happy.

“He likes it cold”.