Rough Go Of It

I send my sincerest apologies as for the past month I have been extremely unwell. The first week of October was my first week of fall break from school. I was just generally run down and feeling drained. A migraine was bound to happen from my interrupted sleep schedule and it came and went at its leisure throughout most of fall break which ran until the 18th (almost 20 days of break awesome!). My sleep schedule now consists of taking at least 45 minutes to an hour to fall asleep and waking up at least 3 or 4 times, sometimes 5, and then struggling again to fall back asleep. The last week of break and into the first week of school, I of course came down with a fever, chills, hot flashes, vomiting, increased dizziness and fainting, the works. That lasted about a week and I was more or less bed bound and slept for the majority of the time to avoid the awful temperature changes that wrecked havoc on my autonomic nervous system. I missed the first three days back to school.

The fever finally broke and I was feeling good, but the migraine that comes anytime I get sick was still lingering. I decided that I needed to get it gone and attempt school, so we went to the ER. They gave me Dexamethasone and it worked. They believed I had a UTI and maybe that was what had prompted the migraine; they gave me antibiotics for it (turns out I actually didn’t have a UTI so I stopped the antibiotics). Also after a few pokes, the nurse had to get out a ultra sound machine just to find what she called my “baby veins”; they also used a baby catheter. I went home feeling pretty alright and at a good manageable level. This lasted until a bitter-sweet surprise landed in lap.

 

My neurologist called; my Botox appointment could be moved up because someone canceled! How sweet! So Tuesday the 17th was scheduled and I was ready to try something new to get rid of my migraine plague. I went to school Tuesday and a few morning classes on Wednesday. Then it was off to the neurologist! The Botox was done, we left, and a few hours later I noticed a slight headache coming on; I ignored it and figured it was from the needles and such. The next day I woke up with a pounding migraine and could barely move, this was not good. The migraine lasted a long time. A few days later a stiff neck set in, so sore I couldn’t turn my head and had to turn my whole body to look at something. The migraine makes my head feel foggy and like I can’t think straight, so homework and school don’t really work. I mean sometimes I stop mid sentence and stare at you for a full minute because I genuinely forgot what I was talking about while I was talking about it. I missed the rest of the week of school.

We headed to the ER on Sunday afternoon to try to give me some relief; I had already maxed out on my home rescue meds. This time the nurse took one look at my (non-existent) veins and brought in the ultra sound machine BEFORE poking me. She also agreed my veins were small and hidden away. They give me Haldol this time and it worked decently. It helped and I was able to go home at a reasonable level. It lasted about two or three days. Again. I went to school Monday and went about trying to catch up, stressing about some of my more in depth classes like Anatomy and College Algebra. and Tuesday I was pulled out half way for my new cardiologist appointment. My new cardiologist is amazing but we will get into that later. So I again didn’t make it through a full week of school; missing Wednesday, Thursday, and Friday to much dismay. I am now very much stressed and frustrated that my body is not cooperating with my educational goals. I am however still on track to graduate, it just may be a little different schedule unfortunately.

On to my new cardiologist. I really like him, he seems knowledgeable and invested in helping me feel like myself again. We had real conversations about my life and his experiences with other circumstances similar to mine. We connected on a personal level; I already trust him. Right away he put me on a 30 day Holter monitor, as he says ” a 24 hour monitor scares away arrhythmias”. We meet again in two weeks where we will discuss if we need to change meds, start an exercise program, and where I will talk to him about the possibility of IV saline infusions as a treatment option if he has no other medications or treatments to offer. I really think the infusions could be helpful as they increase blood volume and help with dehydration; that’s a huge problem when I get migraines as well because my nausea is so bad I can’t hardly drink. My new cardio said I have Neurocardiogenic Syncope, the infusions could help with the near constant dizziness and chronic fainting and blackouts that come along with that by pumping up blood volume and helping with my blood pressure when it drops. We will see what plans he has, and what test he wants to runs, and what steps he wants to take. I believe we can work together and find answers and treatments.

So again, I’m sorry I left y’all hanging for a while but chronic illness is unpredictable. You never know when you are going to flare or have a series of bad days. So I hope I got y’all caught up and I will attempt to go back to regularly scheduled blogging. Thanks everyone for reading! ūüôā ‚̧

Nervous but Excited

School started this past Monday and the week leading up to it was a bit chaotic. My week went a bit like this: School shopping for adorable supplies (this takes forever since I’m very anal about organizational supplies), take a few hour break. Find clothes that are dress code appropriate since I haven’t had one in 2 years, break. Organize backpack and pick out first day of school outfit, break. This made the process last a few days but we did it and I got cute and organized! I’ll admit it’s hard to go back to a school schedule where every hour you’re doing something completely different. It’s annoying to have to be conscious of what I’m going to wear for the day especially since it’s triple digits here. It’s stressful remembering all my teachers names and wear I sit for each class and how to get from 2nd hour to 3rd and from 2nd to 4th instead on block days. But I made it! It’s Saturday and¬† now I’m relaxing, working on some projects due later next week, and making my best friend her birthday card. My plan of action is to go to the nurse during lunch in which I lay down in the Sick Room, close the door, leave on only the warm colored dim lamp, and rest. This gives me 20 minutes or so of in and out napping and laying flat that helps to reduce my headaches and take some pressure off my neck for a while. My nurse is amazing by the way! She’s kind and helpful and if a situation were to arise where you were being taken advantage of, she’d back you. She has helped me some much these last few years, she even helped me realize what I truly need is an IEP to help protect me when my cognitive functioning isn’t at it’s best.

mri

My neurology appointment was also the week before school started. We talked and decided the best route was to do and EEG and an MRI to cover our bases and for when I transfer to an adult neuro. They are both this Monday and I’ll admit I’m nervous. My suspected sensory processing disorder could be thrown into overload and I could potently have a panic attack and that would not be good. I also have to be running on only 4 hours of sleep for the EEG and I still have to go and function at school. That’s what is really making me anxious. Though I may be able to handle it since me sleep has been declining these past two weeks. I went from waking up occasionally, to waking up 2 or 3 times, now I’m waking up up to 5 times a night. I even had a terrifying sleep paralysis episode. I haven’t had one in a very long time, probably over 6 months. But I feel excited for results and a new plan of action. I’ll write a post once I get the results and once we figure out a new way to handle them if need be. For now I’ll see ya’ll soon!

ER Trips and PICCs

So I started this entry exactly a week ago. Exactly a week ago I went to the ER for the first time since the end of February. Of course like always I was admitted, a PICC line was placed, and DHE, a migraine treatment that restricts the blood vessels in your body,¬† began flowing through my¬† tired veins. This ER trip was brought on by more than just a 6 day migraine though. I fainted twice and fell four times in a 24 hour period. I was weak, shaky, and my blood pressure was incredibly low. At one point it hit 76/60 with my heart rate at 153. I called my cardiologist’s office to ask for advice since I never seem to know whether or not I need to go to the ER after I faint. The nurse told me I probably should go because my doctor didn’t get in until Thursday, so off to the ER we went. There, they went through their headache protocol steps; Toradol, Benadryl, Reglan, magnesium sulfate, etc. Meanwhile I went through 3 IVs, BTW my veins suck.¬† After the mag doesn’t help or only helps a little, depending on the migraine, they send me upstairs to a room of my own. Usually I spend 4-6 days in the hospital receiving DHE and the pre-meds¬† (Toradol, Benadryl, some form of anti nausea) through my PICC line, which I’ve had 7 of. This trip was a little different though as I needed extra anti-nausea meds to help me keep my guts un-chucked, we used Zofran and a Scopalamine patch then waited the full 30 minutes before administering the DHE. Most times I still threw up, it’s the luck of the meds I guess. Honestly I frequent my local hospital so much and they pump such hard drugs into my veins that they might as well just give me a Port…ya right, in my dreams. Because they won’t do Port-a-caths for migraine patients even if they frequent the ER every month. Ignore my rant I get frustrated about my lack of good veins.

On to good news. My neurology appointment is tomorrow and I have billions of questions to ask her.¬† I’m going to ask her about my neck pain and cervical instability, my seizure variant episode, hypovolemia and how it could affect my migraines while on my period, do I need a MRI since I’ve never had one, and memory testing because I literally can’t remember shit.¬† I’m also really sad because I might be leaving this neurologist soon, it all depends on whether or not she’ll see me until I’m out of high school. It’s just so stressful trying to find a neurologist under my insurance I really hope I can stay with her. Well, I think I’ll end here for tonight so happy readings y’all.

Ready for Relaxation

Well with only a few bad days in the past two weeks, ¬†and a trip to California to look forward to I’m feeling pretty awesome. I’ve been able to see two movies this month, one was the amazing Wonder Woman that I’ve been wanting to see forever. My stomach cramps, nausea, and bloating after eating have been getting worse though and the delicious California Pizza Kitchen dinner that we had after the movie was almost brought up. But zofran to the rescue! Who would think a tiny little pill could help so much? I was able to make it home to rest without any complications. Now it’s just 4 days till I leave for Cali and 6 days till I see my family! The picture is from our trip two years ago.FullSizeRender

I Am Here, I Am Hurting

invisible-illness-under-the-surfaceYa’ll get a second post this week because I need to vent about my frustrations in finding a chronic illness or chronic pain support group. It seems that if you have a chronic or invisible illness you are invisible to the world. I have found less than a handful of support groups in my area for my various health problems and while I have a more open schedule, others may not. Luckily I was blessed to find two migraine/headache support groups at the hospital I will be transferring to once I am 18. But for my pain, my dizziness and fainting? I have yet to find a POTS group in my area that would take someone not technically diagnosed, but that has all the symptoms. I’m looking in to a pain group but I have no idea where they are located or what times they meet. It seems that all the support groups and charities are directed towards children and teens with cancer or other life-threatening diseases like Sickle Cell Anemia or Cystic Fibrosis. And ¬†that’s awesome! Groups like HopeKids and Amanda Hope Rainbow Angels give the support and dignity and hope that kids fighting terrible battles need. But what about those that struggle everyday? That don’t get to go in to remission or get to be cured? That may not have their life threatened everyday, but most definitely have their lives altered for good? I’m not trying to whine here I’m trying to advocate for myself. I feel alone and forgotten and I sure as hell bet other invisible illness fighters do too. Just because we don’t look sick doesn’t mean we aren’t. Just because we look like we’re keeping it together doesn’t mean we don’t want to break into tears and cry for hours. We need help and support too. Whether we band together and create groups ourselves, or kind souls start up safe havens for us, it needs to be done. ¬†It’s ok to show your hurt, because we all need help at some point in our lives.

Keep On Keeping On

After my Neurology appointment last week my doctor and I decided to keep on doing what we have been doing. We think instead of only keeping me on the Lyrica, it would be best to still keep me on both the Lyrica and the Zonisamide even though they are both anticonvulsants and do pretty much the exact same thing. This high dose combination of both drugs seems to stave of my migraines the best and decreases the intensity of my everyday headaches quite a bit. My new blood pressure medication seems to be doing something…though I’m not sure if it’s enough to keep me on it or if we just need to increase the dose to achieve better results. I have one more appointment with my pediatric cardiologist then I have to switch to an adult provider who may or may not be open to other treatment options that my current doctor already ruled out. My online classes are nearing the finish line and my homebound classes may even finish a few weeks early so that has me more excited for summer and my Cali vacay than ever. I’m stoked that I’m back on track school wise and ¬†am feeling better and can’t wait to see my cousins in a few months. That’s all for now, I’ll fill y’all in some more next Monday.

Taking It Slow

Two full days since the Renaissance Festival and I’m still thoroughly exhausted. Don’t get me wrong I had a fantastic time, I love the Ren Faire and never miss out so I had decided that I’d power through.We visited all my favorite booths, the chocolate shop, the Fairehaven Greyhounds,and a new favorite a pirate shop with replica cap guns. I almost bought one; they were absolutely gorgeous.Overall it was another great Ren Faire experience. I thought I’d pay for it dearly the next day as I usually do with grand outing like this, but instead of a wild migraine for a week I received only a bad headache continuing till today. My new meds saved the day! Huzzah! ¬†Since then I’ve been resting and catching up on my online homework, which I got behind on when I was in the hospital back in February. Taking it slow and taking lots of breaks. I can have a good time too it just might be a little different than yours.

Brenna