ShadyVEU Sunglasses Review

Now that we can see the sun again, it seems appropriate to share my review of some super dark sunglasses!

The ShadyVEU Extremely Dark Sunglasses live up to their name. They are exactly what I was looking for, because sometimes with migraines you can’t get to a dark place. And while they aren’t polarized, they are by far the darkest sunglasses I have ever owned (and I am that crazy lady who tries on all the sunglasses in the store looking for the best ones).

*ShadyVEU glasses in the back, much darker than my darkest pair*

Did I mention they are less than $10? I have shared Migraine Specific sunglasses on here before but let’s be honest, not everyone has upwards of $100 to spend on shades (especially if you have young kids who tend to take and break things).

These aren’t migraine specific but they are DARK. I find them really good for being outside during sunny days, or when I am in the middle of a migraine and need to tone down all the lights ASAP! I don’t recommend them for driving because they are so dark and not polarized, but for everything else they work great! I also really like the classic look of them

*Me figuring out they aren’t the best for driving but they are good for waiting on the sunny side of the bus stop*

The frames come in both matte and glossy, but both are in the classic style. They also seem big on my face because I’m basically child sized but these would easily work on any adult man or woman.

For the price (and free shipping), I definitely recommend these! You can purchase them at: Basik Eyewear – Super Extremely Dark Black Retro Classic 80’s Sunglasses 1 Pair (Glossy Black Frame, Dark Black) https://www.amazon.com/dp/B01E80YCS8/ref=cm_sw_r_cp_apa_emePBb33YYZHC

*I was given these products in exchange for my honest review*

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September Updates

Earlier this month I saw a facial pain specalist for TMD (not TMJ he corrected me) – while all my doctor’s agree this isn’t causing my migraines, it is enough of an issue to warrant treatment. I have been using low dose muscle relaxers and a mouth gaurd for ages (some of you may remember my original neuro who thought I needed them 3 times a day 😴) and I have also done PT and used a tens unit on the joint, I was told those were the only options short of surgery but thankfully my headache specalist has a guy.

Her guy is a DDS who only works in facial pain (and bills medical insurance which is a huge perk since I maxed mind out). My first appointment lasted two hours and had me really impressed. In addition to getting fitted for a new mouth gaurd, he also gave me trigger point injections – I keep hearing about these so when he mentioned them I said go for it (and told my mom I’d be a little late getting back to Flip).

In the glass of the picture frame in front of me I saw a GIANT ASS needle filled with lidocaine going into my face. I don’t even know how many times he injected each cheek because he went in and out (thankfully my face was fully coated in lidocaine first so I didn’t feel much of anything).

Dr. A injected both sides of my jaw and then my temples. For about 30 minutes I literally felt like I was on really good drugs because I had ZERO PAIN. However that was short lived and then the muscles tensed up – the tight temples triggered 3 days of awful Migraine pain so I’ll be skipping that area next time.

My jaw actually does feel better though (still tender to the touch from the injections however). I go back in early October to get my new mouth gaurd and to try the injections again.

Also I saw the Headache Specalist last Friday. She is so compassionate and knowledgeable – a year ago I couldn’t have dreamed up such a wonderful doctor! We are playing with some different abortatives and rescues, and waiting until the end of this round of Botox (early November) to discuss adding another preventative.

While I was there I gave her my full report from Duke’s CSF team (she had previously only received my fluid test and opening pressure report) – she now agrees with the neuro-rad that I am probably not leaking spinal fluid! This means a patch isn’t warranted right now (but if I get super bad again it’s in our back pocket). She, like my Duke Dr, mentioned the rebound high pressure a patch can cause, and then you have to medicate with topamax or something stronger 😳😳😳, which causes all sorts of issues if you then get your pressure back too low or it stays high – it all seems like a tricky PIA.

Also I flat out said there was zero chance I could not bend/lift/twist for a month. I lasted maybe a week after my surgery for my Fallopian Cyst on the not lifting part, so I have zero hope I could last a day on the others. So long story short, no patch! I can trick-or-treat with my kids this year πŸ™Œ

In my latest post I mentioned I have nerve testing coming up – in May I did something (??) and pinched a nerve. I’m still getting numbness in my right arm (and my left big toe???) so I’ll be back at Duke for EMG testing late this month. My Spinal CT didn’t show anything glaringly obvious in the way of the pinched nerve so this was the next step – and apparently it’s a painful one.

We are currently in the middle of Hurricane Florence, and while my new abortative (treximet pills so I don’t always have to stab myself in the leg) isn’t here, I am thankful the new rescue is πŸ‘ŒπŸ‘Œand knocks me right out. I am also thankful for the Botox because I cannot imagine how awful I would be feeling without it!

Today when you are praying and good vibing for my Migraine recovery (and this storm to end ASAP) please throw in some extra love for the coast; I can’t even name all the places we hold dear to our hearts β€οΈπŸ™

Happy Anniversary, Monster Migraine

On September 6, 2017 my whole world changed. My Migraines, and thus my life, spiraled out of control. It took nearly six months of suffering for me to share the details of my condition with those around me; for me to accept that my illness was real, my pain enough to warrant attention.

During this past year I have logged more time in waiting rooms, doctors offices, and hospitals than I could possibly count. I have lost utter faith in doctors who devalued my pain, only to find it again with amazing specalists who are doing everything in their power to help me.

I have been tested for everything in the book (well, one nerve test to go), only to continue to not know exactly why this happened. What we do know is this: for one year I have been suffering from a Chronic Intractable Migraine Without Aura. Prior to that I was suffering from Chronic Migraines (teens), and before that (starting at age 11) they were Episodic. We know that Topamax made me worse, we know that 15 rounds of Intravenous DHE helped very briefly. We know that Botox is the most effective treatment I have received and I am thankful I will continue to get it until at least Jjne (and it will grow more effective).

In the past 365 days I have pushed myself too hard, I have wallowed in self-pity. I have had great hope, but also great sorrow. I have felt supported by the entire world, and utterly lonely. Sometimes, often, all of these in one day.

And it isn’t just me who has been effected by my illness, my friends and family have gone above and beyond to pick up the slack. My mother and husband especially have helped so much with the kids – when the primary care giver is down the whole ship can easily sink. I am so thankful I have people around me to help keep us afloat.

I wish I could tell you my journey is done, I am 100% healed and I won’t be posting on here anymore, but that isn’t the case. Even with my improvement, I am still Chronic. I will continue to see my headache specalist, my neurologist, a physical therapist, a “regular” therapist, a facial pain specalist (he’s new), and I will likely be seeing the neuro-rad at Duke again towards November for a blood patch. This all sounds like a lot – and that’s because it is – but this is my dream team, the people working hard to get me as close to healed as humanly possible. My calendar filled with doctor appointments is a far cry from when I couldn’t get any help. This really is a dream come true.

I don’t know that I could possibly express in one post just how much this year has changed me (and probably every relationship in my life). I have been challenged. I have been blown away with the kindness of these around me. I have learned to actually practice self-care instead of putting myself on the back burner. I have learned to make the most of the good times I have, especially with my kids, because I just don’t know when the bad times will hit or for how long. I still have a lot to learn, finding balance and being gracious and accepting come to mind, but I have certainly started the journey.

As always, I will happily take your prayers and good vibes for continued healing, the support you have all provided means more than I can say ❀️

Botox Is The Bomb

I seriously love my Botox, it’s the only thing that has provided me with any relief. I got my second round last week and it has already brought my pain back down.

Today I got the good news that I have approval for my next 4 rounds (I am supposed to get it every 10 weeks so that’s almost a whole years worth)!! This is a huge weight off my shoulders knowing my insurance company has seen it’s benefit and is going to keep paying for it! Getting it approved in the first place was so tricky, so I am beyond thankful to not have to stress about that for another 40 weeks (but obviously I’ll panic closer to 30 πŸ˜‚).

With the Botox I don’t have a headache every second, sometimes I even have the majority of the day without pain! It is weird when I suffer from other Migraine symptoms without the actual pain, but it is still preferable to being laid up fully (thank goodness for zofran). Last week I even made it back to the gym! Prior to the Intractable Migraine I was so active and worked out 6 times a week; by this spring I couldn’t even walk 5 feet without pain that made me want to cry. Getting shot in the head 30ish times sucks a ton but being able to live my life again is so worth it!

I have appointments with a Facial Pain Specalist and my Headache Specalist coming up so I will report anything worth while. Thank you all for the constant support, I am so lucky to be surrounded by such amazing people❀️

Blood Patch Scheduling Update

I got a call back from the Duke scheduler and unless someone cancels I won’t be able to get back in until October (the schedule isn’t even out yet so I don’t know a date). Obviously I cried when I got off the phone (I exclusively wear waterproof mascara at this point), but my husband was able to talk me down. October gives us time to see how the second round of Botox works and it gives me time to get a support system in place for the recovery (the good news is I may only have to lay flat for 2 days so that would be much better).

I’m obviously kicking myself for not getting patched on Monday but at the time I made what felt like the right choice. The second round of Botox is supposed to work even better so hopefully it really reduces my pain, maybe even to a point where I won’t need the patch. Go ahead and pray for a cancellation though, just in case!

JK I Might Be Leaking

Remember when I said there was no CSF leak to be found? Well that doesn’t mean it definitely isn’t there. My fluid testing came back today and after talking with the headache specalist about everything she felt trying the blind blood patch (where they inject some of my own blood into my spinal column to hopefully clot up in any holes and eventually have scar tissue permanently seal them) as a diagnostic is worth while. So I’m sort of kicking myself for not getting it yesterday but such is life. I mentioned the downside of the blood patch is the recovery to help it stick; one week of laying flat except to use the restroom and then no bending/twisting/lifting for at least 4 weeks. I’m so lucky to have family who is able to help because my worst year medically has been Chuck’s busiest year work wise. Oh and a 6 and (almost) 3 year old aren’t exactly low maintenance 🀷

So today I ask for prayers and vibes that Duke can get me back in ASAP! Also this is a reminder that the Carolina Headache Institute is the bomb and if you are a local sufferer please go there, it’s the best.

Duke Day 2/ No Leak (most likely)

I had no idea what I would hear today and how I would respond to it, but considering last night I was crying over having a Spinal Fluid Leak, I think I am relieved not to actually have one.

When my step-dad and I were taken back today, I still had no idea what this appointment would entail. Cue further confusion upon seeing my chart with “Blood Patch w/ Fibrin” on it ( you can only get a fibrin glue blood patch if they have found a leak). When the doctor came in, it was pretty clear about 5 minutes into his educational speech about CSF leaks that there was nothing quite so concrete as a gaping hole in my dura. The doctor explained how hard CSF leaks are to identify and the five different factors that take into account when diagnosing them (I want to take this time to remind everyone that Duke has basically written the CSF Leak Bible so his word is good): Out of the 5 factors ( positional headache that goes away upon laying down, lumbar puncture lower than normal, MRI showing Brain Sag or Dural Enhancement, and feeling better with fluid add/ worse when taking away) I only had one, and that one is the least proven. The doctor explained we could try a blind blood patch to see if it helped, but there is a risk with puncturing my dura again and since the Botox is helping it didn’t seem worth it – especially since the recovery to help a patch stick is a month long.

I asked if I could possibly hold off on trying the blind patch and the doctor said absolutely, I wouldn’t have to wait another 3 months once I called, it would just be whenever they could fit me in after I decide I want it. I plan to discuss it with the headache specialist when I go, but both the Duke doctor and the Headache doctor felt very optimistic about botox continuing to help and hopefully end all this nonsense.

I get the Botox again at the end of next week and I cannot wait! It has worn off most of the way and my pain level continues to jump back up, though not as much as when I was on the Topamax. One thing I definitely learned is that if my CSF pressure is 13 and the normal lowest limit is 10-12 , it most likely lowered my into Intracranial Hypotension (low pressure) causing leak like symptoms. I have been off it for just shy of three months now but apparently it can stay in your system (or at least mess with it) for three months, so that could be a factor.

Overall I feel good, while it is frustrating to not have a clear answer on exactly why this started nearly a year ago, my long history of headaches and migraines means that even if they did find a leak I would still be dealing with head pain post patch ( and my paranoid mind worried that insurance wouldn’t want to keep covering botox after a blood patch).

I see the headache specialist two weeks after my next round of Botox so I will share here any updates on my care and our game plan of treatment(s). As always I appreciate any healing vibes and prayers you can send my way!