What’s Working For Me Right Now (March 2019)

Last March I wrote a post about the medications, supplements, and treatments that were working for me at the time. A year later, I feel much more knowledgeable about what living with these illnesses look like for me and how I want to manage/treat them. Since May 2018, I’ve moved back home to Southern California, have new doctors, and take more medications, especially for Mast Cell Activation Syndrome (MCAS). I also have broadened my scope to include treatment for my scoliosis and help with my mental/emotional health. So, without further ado, here’s what’s working for me right now:

(Please remember that just because people have the same illness, the symptoms and severity is different based on each person.  Health is very individualized, so what works for me may not work for you and vice versa.)

Hypogylcemia

Not much has changed in this department. I still snack throughout the day and experience dips every once in a while. With snacks, I try to make sure I eat a combo of carbs, protein, and fat so that my blood sugar is stable. My go-to is apples with peanut butter.

A few months ago, I was experiencing a loss of appetite, so some days I wouldn’t want to eat at all. However, I quickly learned from a couple of hypoglycemic episodes that something needed to change.

Now, I always carry a small tube of honey with me in my backpack that I take everywhere I go, for emergencies. I just eat a spoonful (or more) or honey when I’m having an episode and then I wait until I’m coherent again to figure out what to do next (because sometimes a hypoglycemia episode triggers a mast cell degranulation, yay!)

For everyday life, I’ve been drinking a daily smoothie so, even when I’m not too hungry, I at least get something in me. I just blend frozen fruit (strawberries, pineapple, and berries are my favorite), oat milk, spinach, avocado, and a banana together and then I’m good to go.

Lifestyle modification Frequency Why I use it
snacks throughout the day every 2-3 hours to keep my blood sugar stable
1+ tablespoons of honey when I have a hypoglycemic episode to quickly increase my blood sugar

Scoliosis

My Back
An X-ray of my spine in 2013, with a curve of 17 degrees.

I actually didn’t talk about my scoliosis in my post last year. Why? Because I kinda forgot about it! I was diagnosed in 2013 with a curve of 17 degrees and the doctor told me as long as I exercised I’d be fine. And back then, I’d always thought I’d be exercising regularly. So I pushed the diagnosis to the depths of my brain and never thought I’d really have an issue with it.

But y’all know what comes next… I didn’t exercise for the most part of 2018 because I was really sick. And then I couldn’t distinguish the pain from MCAS from the pain from scoliosis because half of the time, I forgot I had scoliosis and the other half of the time I was just trying to keep my head above water long enough to get a grip of managing my symptoms.

So now, I regularly go to the chiropractor and do chiropractic exercises to help keep my adjustments in line. A lot of my upper back nerve pain has gone away and most of the shooting lower back/hip pain has gone away as well.

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In addition to chiro visits and exercises, I’ve implemented more ergonomic ways of sitting/lying on chairs/couches and using up my laptop. When I sit on a couch now, I use a small pilllow for lumbar support and never lean back too far. If I do, I have a spasm. As for my desk setup, I use a laptop stand so the middle part of my screen is eye level. I also use a rechargeable bluetooth keyboard and wireless mouse so my elbows form a right angle to the desk.

 

Lifestyle modification Frequency Why I use it
chiropractic visits 1x/2 weeks to maintain the position of my vertebrae and prevent worsening of my curve
laptop stand/bluetooth keyboard/wireless mouse desk setup (almost) every time I use my computer to maintain my posture and prevent back spasms

Hypothyroidism

So… I don’t have hypothyroidism anymore. I don’t really know why and I haven’t really done any research on it, but that’s that.

Chronic Fatigue Syndrome (CFS)

I was diagnosed with CFS in April 2017. But after my MCAS diagnosis, and given that there is more information/clearer treatment options for MCAS than CFS, I now just focus my energy towards treating my MCAS.

Plus, fatigue comes along with MCAS and Postural Orthostatic Tachycardia Syndrome, so my CFS diagnosis is somewhat redundant in my opinion.

Mast Cell Activation Syndrome (MCAS)

Alright, alright, now we’re getting to the meat and potatoes of it all. I was diagnosed with MCAS in January 2018 by the wonderful doctor that started me on all my medications for this syndrome. Now, I go to a different doctor in California who has put me on more medications to amp up my mast cell mediator buffer and reduce the frequency of my reliance for sweet ole Benadryl.

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So like last year, I take Cetirizine (10mg 4x/day vs 10mg 2x/day last year), Ranitidine (150mg 2x/day vs 75mg 2x/day last year), and oral Cromolyn (2-100mg/5mL 4x/day, same as last year). The meds that have been since added into the mix are Montelukast (10mg 1x/day) and Omalizumab (300mg/month). Also, I don’t use opthalmic or nasal Cromolyn anymore. They just weren’t really working. Now, for eye issues, I use Blink Tears.

In addition to the above medications, I take aspirin when I have bad brain fog and Benadryl when I have those big, bad reactions.  I also have an Epi-pen just in case, but I’ve never have needed to use it.

Along with medications, avoid foods that give me reactions. Here’s the updated list:

Eggs
Sunflower seeds
Amaranth
Sesame seeds
Milk/Whey
Cranberry
Sugar cane
Almond
Mushroom
Gluten
Blueberry
Shrimp
Coffee bean
Walnuts
Peaches
Chamomile tea

Although walnuts, peaches, and chamomile tea were added to the list, I’m no longer sensitive to corn! That’s a small, but mighty win, y’all.

Also, recently it came to my attention that I am sensitive to fragrances and develop symptoms when I either smell fragrant things or ingest them (like drink chamomile tea). So, I avoid fragrant foods and avoid fragrances. However, sometimes I can’t control my fragrant environment. In those cases, I use my Vogmask or simply leave the room, if possible.

Another lifestyle modification I added to the mix is using a wheelchair to conserve energy and/or prevent myself from reacting. I got mine at a second-hand medical store in Colorado in early May of last year. It’s really helpful when I want to do more in my day but couldn’t do it all if not for being wheeled around. The brand is Zippie, and after scouring the internet, I think I found my exact model, which actually turns out to be a kids wheelchair lol. Nevertheless, it’s lightweight and gets the job done.

Medication Frequency/dosage Why I use it
Cetirizine (Zyrtec) 10mg 4x/day H1 receptor blocker
Ranitidine (Zantac) 150mg 2x/day H2 receptor blocker
Oral Cromolyn 200mg 4x/day Mast cell stabilizer
Montelukast (Singulair) 10mg 1x/day Leukotriene inhibitor
Omalizumab (Xolair) 300mg 1x/month Mast cell stabilizer
Blink Tears 1-2 drops/eye as needed for burning eyes
Aspirin 81mg as needed to help reduce brain fog
GliadinX 335mg per 800mg of gluten (will only work up to a certain point though) to prevent a reaction from gluten cross-contamination
Benadryl 1-2 tsp as needed to quell big reactions
Lifestyle modification Frequency Why I use it
Vogmask as needed for odor/fragrance sensitivity
Diet without food sensitivities every day to reduce mast cell degranulation and avoid big reactions
Wheelchair whenever I feel I need it to prevent flare ups and save energy

Postural Orthostatic Tachycardia Syndrome (POTS)

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I was diagnosed in February 2018, but didn’t start treatment until this past summer. Now, I wear 20-30 mmHg compression socks every day and am much better at increasing my fluid/sodium intake daily. I do this by adding Hammer Nutrition’s Endurolytes Fizz (which has 200mg of sodium per tab) to my Nalgenes. I drink about 3-4 Nalgenes of water with 2-3 of these tabs added per day, so that adds up to 1,200-2,400mg of added sodium per day, along with the salt from my meals. (It’s recommended that people with POTS drink 2L of water and consume 1,179-1,965mg of sodium per day.)

Lifestyle modification Frequency/dosage Why I use it
compression stockings 20-30mm Hg stockings everyday to decrease venous pooling and increase venous return to the heart
Fizz tabs 6-12 200mg tabs/day to increase my sodium/fluid intake

Periodic Limb Movement Disorder (PLMD)

After the results of my at-home sleep apnea test came back negative in March of last year, I finally did an in-house sleep study in July. With 59 periodic limb movements of sleep (PLMS) within an 8 hour period (approximately 8 PLMS per hour) and no other vitamin or mineral deficiencies, I was diagnosed with PLMD.

I now take Gabapentin (300mg 1x/day before bed), anticonvulsant medication to stop my nocturnal muscles contractions.

Medications Frequency/dosage Why I use it
Gabapentin 300mg 1x/day inhibit nocturnal muscle contractions

Other ailments

Last year I talked about my light and noise sensitivity (and odor sensitivity, but I now classify that under an MCAS symptom because of my fragrance sensitivity). Now, I usually only becomes sensitive to light and noise when I’m flaring. When that happens, I still use my FL-41 tinted glasses or sleep mask, and noise-cancelling earmuffs.

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While in a flare, I donned my noise-cancelling earmuffs, FL-41 tinted glasses, Vogmask, and portable fan to wheel out and see 4th of July fireworks last year with my family.

I still get overstimualted, but to a lesser extent as I used to. I think this is because last year, I was in survival mode. I was still in college, about to graduate, while driving myself to appointments, cooking for myself, etc. and dealing with worse symptoms than I do now. It was just a lot.

Now, I live at home with my parents who help me on a daily basis and I work part-time with 15-20 hours per work. Needless to say, it’s much more manageable now.

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I also go to a really good therapist every week who specializes in helping people with chronic illnesses. I’ve learned so many great ways to cope and accept my situation so I can enjoy my life. Recently, I’ve been using the workbook, “Mind Over Mood,” to challenge my current thought processes to see both the negative and the positive and ultimately shift my core beliefs. It is a bit annoying to read and get through, but I’ve learned a lot from doing all the exercises and talking through it with my therapist.

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In addition, I (try to) use my emWave every day to calm my body and get it working in its optimal condition. More of the science behind this lil biofeedback device can be found here.

 

Lifestyle modification Frequency Why I use it
FL-41 tinted glasses whenever I have light sensitivity blocks fluorescent light
sleep mask whenever I have light sensitivity blocks all light
noise-cancelling earmuffs whenever I have noise sensitivity reduces ambient noise
therapy 1x/week to deal with emotional issues that arise with my illnesses
emWave ~1x/day to calm sympathetic nervous system

And, that’s it for now. I’m hoping to continue writing these yearly posts to update everyone on what’s happening illness-wise for me. It was actually cool to see how far I’ve come concerning my symptoms while writing this.

As always, feel free to reach out to me if you have any comments or questions//

-Mel

 

 

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