Calling All Migraine Sufferers | 2018 Migraine World Summit

It’s been a while since I’ve posted any content on migraines and/or headaches so I thought a call out to fellow migraine sufferers would be apropos for this post.  The third annual online summit with tons of information about migraines is coming up soon.  I just happened to stumble upon the first one a couple years ago (and proceeded to post about it back in 2016, https://wp.me/p4OQn7-ap.)  Since then the summit has grown…more speakers, more days, and more topics.  And it is still free to attend – from anywhere, even your own bed!

So if you are interested, here’s the link: https://www.migraineworldsummit.com/.  The 2018 summit runs from April 18-26 this year.  Although I haven’t found my special sauce or a cure for myself for migraines yet, perhaps you may just find something that helps you from one of these speakers.

Given that I suffer from both migraines and headaches and feel that I have exhausted pretty much both natural and pharmacologic options, I am not sure if I will attend this year.  But looking over this year’s agenda, a couple of seminars have caught my eye so I may listen in; who knows I may learn something new or I may roll my eyes again as my head rages on.  I’m learning it’s OK to be “Cynical Cindy” – she keeps my sassy self company when I am feeling lonely. #sickbutstillsassy

PS. I made it to Texas safely.  It was a herculean moving effort and I don’t think I can quite thank my family enough for their help.  Of course I was critical in everything they did (e.g., nope wrong drawer, can you move that there instead), it was a nightmare for them and me – one that seemingly lasted for months and I am sure one that we would all like to forget (or perhaps will look back fondly on and laugh at one day).  It didn’t help that for much of it I was bedridden and directed them virtually.  As I am settling in, I have found surprises as to where things are and have had to rearrange things to meet my needs (as in move things that I use more often to more functional locations) – all this to say stay tuned for a moving tip post of course! 

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moving (on)

I am moving. From Colorado. To Texas. Where I have family.  My illnesses have taken yet another piece of my life.

I don’t know what else is left for my illnesses to take.  My independence is gone, my dignity is gone, and my former life of working and traveling and so many other things have been taken from me involuntarily.

Sure I have found some substitutes like blogging, helping others on their medical journeys, and raising awareness.  I have made new friends.  I am sharing my sassiness and sick sense of humor.

But it is not easy to spend most of my time looking out the window watching life pass me by.  And now instead of sunny, mountainous Colorado, it will soon be from hot, not so photogenic Texas.

With time, I am hopeful I will be more excited and accepting of the move because after all, I will have my family in close proximity and some good margaritas for my sanity. #sickbutstillsassy

Post script: Speaking of awareness, March is the month for awareness for autoimmune diseases. The American Autoimmune Related Diseases Association (AARDA) is working to educate the public on risk factors, prevalence, and the severe lack of awareness surrounding autoimmune diseases. There are over 100 autoimmune diseases; my journey started off with a diagnosis of Sjogrens and now I have more than one (plus I have postural orthostatic tachycardia syndrome (POTS) and mast cell activation syndrome (MCAS), which are not considered autoimmune diseases). For information and statistics (or even to donate), check out their website: https://www.aarda.org/. Help spread the word! #AutoimmuneDiseaseAwarenessMonth #AARDA

Also, when I scheduled this post to publish, my exact moving date and delivery date of my belongings were to be determined. My hope is to be settled in early April but who knows, everything seems to take longer in my condition, even with extra hands. All I know, that much like sitting in a doctor’s waiting room, this move is like a waiting game that I don’t have much control over. It has been stressful and once again I am very fortunate for the assistance of my family and the offers of my friends to help. I haven’t been good at sharing the news as this was not a voluntary move so some of you may be surprised by this post itself; my illnesses have taken one more “thing” away from me. When I get settled, I hope to be more open about the move and share tips that I have learned along the way, the emotional rollercoaster I have endured, and by then hopefully my inner sass will be more outwardly obvious as it has too taken a hit during this moving “adventure.” Undoubtedly, this has been a grieving period as we pack up my things and move me from CO to TX.

 

 

rituxan round up | my fourth infusion

Back in February, marked six months since my last infusion.  It was almost as though I forgot I was on Rituxan.  As I shared in my first Rituxan post (https://autoaylie.wordpress.com/2017/01/24/rituxan-ready-or-not/), it was not a light decision to start it as Ritxan is a cancer drug.  It has shown promise for many MS patients, but data is mixed for other autoimmune conditions such as Sjogren’s.

The morning of the infusion in early February didn’t start off on a good note as it started with my #peeingproblem.  I downed a bunch of DDAVP in the hopes that it would help control the frequency of my peeing because going to pee while hooked up to the IV would be awful – I do NOT touch IV poles.  It would necessitate calling a nurse every five minutes, which would be a toss-up on who would find it more annoying.  I know I would also find it humiliating, energy draining, and frustrating.  Thankfully the amount of DDAVP I downed and after a few pees prior to getting hooked up, I was OK.  (Plus I naughtily didn’t drink during the actual infusion – this is usually a no-no for me.  But I was not about to incite my peeing again.  #priorities)

The nurse was able to get the IV in on the first attempt – as it should be, yay! I had lactated ringers (instead of saline because of the saline shortage) for an hour.  Lactated ringers is a liter and very similar to saline; it is a mixture of sodium chloride, sodium lactate, potassium chloride, and calcium chloride in water. (Lactated ringers is said to maintain a more stable blood pH than normal saline; not sure what that really means and how that equates to having a liter prior to a Rituxan infusion but suffice to say either one can be used (but note, I had forgotten and didn’t stop the nurse but should have, as saline – or in this case lactated ringers – was not necessary prior to the Rituxan). I also premedicated at home since I don’t do well on the usual premeds given at the infusion center – I took Tylenol, Zyrtec, and Ativan (which is blessed by my specialist so please discuss with your doctor). I recently switched from Klonopin to Ativan for my mast cell activation syndrome (MCAS) since Ativan has a manufacturer that makes it with no dyes! You should consult with your doctor before changing your routine.) (I peed again before they hooked me up to the Rituxan.)  Then the Rituxan infusion started.  It went on for about four hours, which was longer than past infusions.

My head was raging by the end and my stomach was in knots by the end too.  Ever since the failed Mestinon experiment in October in 2017, I get cramps, and this infusion seemed to spark awful cramping.  I also walked out with a low grade temperature.  I slept for 24 hours.  The fatigue like state has continued for most of February but not as severe as the initial 24 hours.  February seemed to fly by as I slept through most of it.

After a year of having these infusions equating to a total of four (two in rapid succession – two weeks apart, and then one every six months apart), I have not noticed a difference in my health.  I am told I should have by now.  But I am also told that there is a slight chance that I still may.

I am trying to not be discouraged.  But where do we go from here?  How do I keep being hopeful when I keep trying drugs that don’t help my body as they should?  I don’t have the answers to these questions.  But I do know that if you are considering Rituxan, you should still.  After all, it is trial and error finding the drug that works for your body and it could end up being your special sauce so don’t let my experience stop you.  I am not sure yet if this was my last Rituxan infusion or not yet; the verdict is still out. We will wait and see but I won’t be holding my breath either way. #sickbutstillsassy

MCAS | my excipient ingredients project – more

Needless to say, I have more to say on my excipient project (initial post: https://wp.me/p4OQn7-en). Some things I just forgot to mention and some things were sparked by readers who shared their thoughts (thank you!). So here goes:

– You can do this project whether or not you have Mast Cell Activation Syndrome (MCAS).

– You may choose to extend this project beyond your medicine cabinet. For example, polysorbate 80 is an emulsifier that is used not only in medicines but in foods (like ice cream) and cosmetics (like lotions) too.

– Some medicines are made by multiple manufacturers, which means that different fillers are used. Also, your pharmacy can arbitrarily change the manufacturer of a medicine so be aware because that obviously can lead to exposure to new/more filler(s). So this project can give you an opportunity to look into seeing if there is a specific manufacturer you would rather use if your pharmacy will give you flexibility. A brand can be a better albeit more expensive option than the generic based on the fillers; but in some cases, the brand may have a more offensive excipient ingredient list than a generic – I have seen that! (Note: The pharmacists at my pharmacy have been amazingly patient and caring so I have lucked out during this 1+ year “adventure”. Be respectful of your pharmacists and work to educate them if they don’t understand what MCAS is and what you’re up to.)

– Remember some fillers are necessary even in compounding but with compounding it is minimal and allergen friendly so you get to work with the compounder on what filler(s) is/are used.

– A reader reminded me about preservatives (great catch, thank you!). For my friends with Sjogren’s this becomes even more relevant with eye drops. I look for ones that say “preservative free” which are typically the single vials (Costco sells them at a pretty good price, no financial interest). Preservatives to be wary of include sodium benzoate, sulfur dioxide, and sodium metabisulfite.

– It may take a while to figure out what, if anything, you are reacting to. If you see a pattern of a specific filler that you think you may be reacting to, before removing the offending medicine(s), remember to speak with your doctor. Some medicines you may not be able to go off and/or some may not have alternatives.

Needless to say, I will probably think of more to share or someone will send me a great nugget of wisdom. This may be the never ending project for me as I have yet to identify a filler that I react to specifically. But I have eliminated all dyes. I have also selected all my medicines with the least amount of filler ingredients. And I will be very selective for all future medicines, whether prescribed or over the counter. Last but not least, I am very grateful for my pharmacists!

MCAS | my excipient ingredients project

It has been a painful lesson physically and emotionally to endure drug failures.  Each one I have lost more of my spirit – and undeniably more of my fight to want to keep trying new drugs.  At the beginning, my body bounced back, as did my spirit from failed experiments. Lately my body is not bouncing back.  My skin is scarred from the Gleevec, my stomach is wrecked from the Mestinon, and my spirit is damaged from the accumulation of all the recent failures.  But this post is not a pity party for one, instead it is about my project that I started back in 2016 that I want to share.

Long before I was even diagnosed with Mast Cell Activation Syndrome (MCAS), my specialist had me embark on a project to try to determine if I was allergic to the ingredients in my prescription medicines.  You see, if you go and look at the medicines you take, you will see a long list of excipient ingredients, known as fillers in layman terms.  I am still astounded by the number of “fillers” that manufacturers put in their medicines and that the FDA actually approves.  I understand that a couple of fillers are necessary to get the medicine down one’s throat but beyond that, for people with allergies, it is a very unnecessary practice.

So I put together an Excel file.  One tab covered the ingredients, I would mark them active or inactive – the fillers would always be inactive.  I had the name of the medicine on the top row and then the ingredients on the sides so I could cross reference.  The end goal would be to see if I was ingesting any unique filler ingredients – and perhaps determine if I was having an allergy to any of them.

In another tab, I would gather specific information of each medication such as when I started taking the medication, the dose, the manufacturer, when I stopped and when I resumed (may or may not be relevant), if I changed manufacturers (may or may not be relevant – this would often lead to a new column in the other tab because manufacturers have different filler ingredients).  I also included the half-life (as in how long it lasts in my system) and where I purchased the medicine.  I also created a separate tab for all of my over the counter (OTC) drugs and completed the same documentation (OTC meds are full of fillers too!).

I kept track of symptoms including when I ran experiments (e.g., last year I took a brief hiatus from my one blood thinner but stayed on the other and during that period had in increase number of migraines; while it could have been coincidental as soon as I went back on the blood thinner the number of my migraines leveled off again, essentially indicating I was in need of both blood thinners). Warning: whatever you do, do not stop taking a medicine without consulting a medical professional first! I looked for patterns. Although I didn’t see any, I did share my findings and always discussed issues with my doctors when I added new meds or stopped taking any meds. And don’t forget that your OTC meds should be incorporated into your project too, you’d be surprised as to how much “junk” they too have, including your vitamins.

So yes this is a very tedious project.  It requires finding out from your pharmacy who the manufacturer is.  Then you need to go to Daily Med (https://dailymed.nlm.nih.gov/dailymed/) to look up the ingredients.  The easiest is to type in the name of the drug in the search box and then look for the manufacturer.  (Or you can use www.drugs.com.)

Back in 2016, I realized many of the drugs used the same fillers and I suspected that I didn’t have an allergy to any.  But I sure was alarmed by the sheer number of fillers in each medicine.  I did drop a few drugs from my list at the time as an experiment (all of this was done in collaboration with my specialist).  I didn’t notice anything so I thought I was in the clear with the fillers.  While this project didn’t specifically help my body, I did find it enlightening.  (Note: patients with MCAS can have allergies to dyes, alcohols, and talc, which are often used as fillers in both RX and OTC drugs.)

But fast forward to November 2017. I had stopped looking up excipient ingredients for almost a year.  I added a drug to my daily regime in February 2017 and never thought to look up the ingredients.  It was a white pill, which I thought was especially innocuous.  With having just been diagnosed with MCAS, dyes and other filler ingredients are known triggers for some patients.  So I reopened this project.  I was alarmed to see that this “white” pill had a BLUE dye as one of its filler ingredients.  Unfortunately through this process I did learn that Medicare would NOT cover compounding. Compounding is the art and science of preparing personalized medications for patients. Compounded medications are made based on a specific prescription, in which individual ingredients are mixed together in the exact strength and dosage required for the patient so it can easily exclude allergens.

Compounding is also very expensive.  I also learned that some pharmacies are NOT legit compounders. Compounding of medicines does NOT mean repurposing generics into powder.  So be aware when you are looking into compounding options.  Compounding should literally be the active ingredient and a safe filler or two.  After a lot of searching in the case of this medicine I was able to find an alternative manufacture that used fillers that did not include blue dye.  I am not sure if my body is liking the alternative or not yet as it has been in a tizzy for months.

Perhaps if/when I have more energy I will launch a project into why the FDA allows manufacturers leeway into using so many fillers.  You don’t need dye to distinguish between pills, they are already marked with numbers and vary in size.  Pills also don’t need to taste good, they just need to go down.  If compounding can accomplish that, then why can’t the manufacturers.  Let’s save money (and potential allergic reactions) by using less.  Again, pharmaceuticals shouldn’t be a for profit business, they should exist for saving patient lives. While this project didn’t reveal an allergy for me, it was interesting and enlightening albeit frustrating. But it could help you figure out one so don’t let me hold you back and I am happy to help answer any questions you may have with your excipient ingredient endeavor should you choose to embark on one. I will admit that all my meds are dye free (and I specifically look for manufacturers that have the least amount of fillers and no dyes, especially now that I know I have MCAS). #sickbutstillsassy

some sweet super bowl awareness?!

I’m really not sure how it’s February already.  I normally welcome the Super Bowl with open arms.  This year, I watched it with half closed eyes as my fatigue was off the charts and I struggled to keep my eyes open.  I was particularly interested in whether the commentators would mention anything about Tori Moore, the wife of the Eagles quarterback, Nick Foles.  She has Postural Orthostatic Tachycardia Syndrome (POTS).  I thought with the millions of viewers it would be prime to elevate this health condition and bring us some much needed attention.  But alas, I never once heard it mentioned.  Maybe I missed it?  Maybe they did a piece on it before the Super Bowl?  Maybe they’ll do one after the Super Bowl now that the Eagles won?  There were a few publications like Bustle and Elite Daily that mentioned it in articles prior to the Super Bowl but I didn’t see it in Sports Illustrated or ESPN (again unless I missed it).

Tori was a former athlete and worked at Nike.  Maybe she didn’t want any hoopla.  But with the Super Bowl behind us now, I hope she’d want some hoopla.  There is still so much awareness needed for POTS.  I know I am a private person, but I have sort of forsaken that for spreading awareness and trying to be a source of information and inspiration for others. I was a former athlete, a former professional, a former traveler, a former volunteer, and gosh put former in front of so much.  I don’t do a lot now since my medical journey and all of my diagnoses have stripped me of my former life.  But I have realized with the little energy I have it is important to share my journey in the hopes it can help at least one person, inspire one person, make one person laugh, make one person feel less lonely, and shed light on the struggles we face with these lesser known chronic illnesses that the general public aren’t aware of and that are also under-recognized within the medical community.

Anyway, the Super Bowl marked the end of another NFL season. I finished tenth in my pool as #beardown.  My Chicago Bears didn’t totally embarrass me; we had a few good wins and saw some stars emerge.  I look forward to next season with a new coach and seeing the potential of Trubisky, Cohen, Howard, and the other young players gelling to be a force to be reckoned with.  I was proud to see Brian Urlacher voted into the Hall of Fame this past week and see JJ Watt receive the Walter Payton award for his selflessness in raising over $30 million for Hurricane Harvey relief efforts.  Former Chicago Bear Walter Payton aka sweetness, was amazing both on and off the field. So for the past 16 years being in my pick pool, my pick pool name is usually tied to sweetness to honor Payton’s legacy of giving back or as an ode to the Chicago Bears. Payton, McMahon, Singletary, Dent, Perry, and the rest of the guys of the 1985 Chicago Bears team who won the Super Bowl and rapped the Super Bowl Shuffle (“we’re so bad we know we’re good”) are forever in my mind. So I hope that one of the memories associated with the Eagles being in Super Bowl 52 will be more awareness about POTS.  Congrats, Eagles on your win! #flyeaglesfly #sickbutstillsassy

Post script: I dedicate this post in memory of Elinor aka Mrs. G. who passed away this week. I have known her since I was twelve I think; she was a dear friend, another mother to me, a warrior, and a kind, blunt, sassy soul. She and I would gab for hours about our lives, news, and sports – even football, swapped books, shared a love of snail mail, and put on brave faces when times were tough. She was often my Valentine when I had none, remembered my birthday no matter what, and was always there to celebrate milestones. She will be missed but will forever live on in my heart and in those of her family and friends. I have no doubt that every time a nurse misses my vein, she’ll cuss from above with me!

northera is not for me

Before I bid adieu to 2017, I tried one more medicine for my postural orthostatic tachycardia syndrome (POTS), Northera (also known as Droxidopa) in December. According to the literature, Northera is a synthetic amino acid precursor of norepinephrine used for the treatment of orthostatic dizziness, lightheadedness, or the “feeling that you are about to black out”. From my understanding it theoretically should elevate your blood pressure (but not to an unhealthy high level). It is approved for orthostatic hypotension and is evidently a commonly prescribed drug for patients with Parkinson’s.

I was instructed to take Northera twice per day (no dosing up for this drug, just a dive right in it approach), take one dose in the morning and the second dose about three to four hours before bed. I was also instructed to take my blood pressure (BP) three times per day and if I had to take Maxalt for a migraine to skip a dose of the Northera (this is because Maxalt and the Northera combined could elevate my BP to an undesired high level). And if my systolic got to 120-140 I should stop taking Northera (that is the upper band of the BP – and mine never got above 110, it actually hovered in the 90s at best).

I started taking the Northera on a Friday. I persevered for two weeks. In those two weeks, the medicine barely elevated my BP (we would monitor my BP after I stopped taking the Northera and the levels were the same). The only thing Northera did succeed in doing was making my head rage more than usual and I spent most of the time bed ridden. Even taking one dose per day still caused my head to rage more than usual. The experiment was another #fail and we all concluded that Northera was not for me.

Again it was another disappointing drug experiment that left my body worse off and my spirit broken. However as I write this I am reminded that there may be a drug out there for me, so don’t let my experience deter you from trying Northera if you suffer from POTS. It is a rough road trying all the meds out there because there is no guarantee that there is one that will work and in my case all the POTS meds have done my body some form of damage. I am left still searching for my special sauce. So I entered 2018 on a down note, knowing that I would be taking a break from meds for a while. Both my body and my spirit need a break, ironically aligned to winter break for kids in the US. Hopefully an extended “winter break” from experimentation will do me some good. #sickbutstillsassy

gleevec goosed me

As I shared in November, I was both relieved and heartbroken to share that I was diagnosed with mast cell activation syndrome (MCAS). One of the reasons I was relieved was because it meant that I could be prescribed a medicine called Gleevec (also known as imatinib mesylate), without a diagnosis I couldn’t. I was led to believe it could be the wonder drug to control the mast cells that have been severely misbehaving in my body.

If you Google Gleevec, you will see that it is used to treat Leukemia. It is a kinase inhibitor – a targeted cancer therapy, which in the case of MCAS would in theory stabilize mast cells. Again it is a drug used off-label for MCAS. I was prescribed 100mg, twice per day but was to start at 100mg at night for a week and then start taking it twice per day. Again I was a lowest dose candidate. Even though it has been on the market for years and I purchased a generic it was still the most expensive pharmacologic experiment I have ever embarked on. The cost still makes me bitter (health insurance means nothing, which is a separate rant). If it was a success I couldn’t afford the monthly cost but I will ruin it to say that four days in, Gleevec wreaked extreme havoc and it makes me sick that I wasted so much money and its impact on my body is still haunting me.

I took the first pill on a Friday night in November. I woke up on Saturday morning feeling a bit off and with acne/rash on my face and neck. That afternoon I crashed hard. Sunday my face and neck looked worse – and my chest was covered. And I was extremely fatigued, barely able to get out of bed. Monday the rash/acne/blisters had spread to my legs and my feet were swollen and I was still fatigued. Ironically that Monday I had an appointment with my primary care provider (PCP) for a blood draw because of a different issue. By Monday my entire body was itchy and burning on and off so I was relieved to have an appointment with him but not sure how I would make it out of bed. By that Monday appointment I’d had three nights of pills and it would turn out that Gleevec would have already impacted my creatinine level (a kidney function). I was also losing more hair than usual (I do have alopecia, so more hair loss than usual in just three days was disconcerting but looking like a leper and feeling like I was on fire while comatose was of more immediate concern). Yet I still took a fourth pill. I didn’t find out about the blood work until the next day, Tuesday – and that is when I decided I’d done enough damage to my body. Four pills resulted in HELL. It took about two weeks to not look like a leper. My skin is still reeling months later but at least I don’t look like a leper just like a teenager with acne I suppose.

The biggest irony to this disaster is that Gleevec was supposed to control rashes and calm my MCAS symptoms. Instead it created an epic outbreak, where not only was my skin full of rashes and acne, it was also blistered and bubbly – and itchy and burned. It was physically and emotionally painful. I was so excited to try a dedicated MCAS medicine but it turned out to be such a disaster. I also slept through Thanksgiving so I missed out on Turkey and cranberry sauce (about the only two easy gluten free things I am guaranteed at the table), not to mention good company. If you have read Dr. Afrin’s book Never Bet Against Occam you will read about the patient success stories on Gleevec. Don’t let my experience deter you from trying Gleevec but be aware that it may not be all rainbows and unicorns. Not only did I look like a leper but my kidney function was even impaired after three pills. This drug failure left me feeling very goosed (oh yes, pun intended!) and mightily betrayed yet again by my body. But I would and did pick myself up again in December and would try one more drug, a postural orthostatic tachycardia syndrome (POTS) related drug, that I had purchased back in October as prescribed by the Texas dysautonomia experts… #sickbutstillsassy

mestinon messed me up

Sometimes they say you can’t go forward without looking back and sometimes they say you have to let go to move forward. Either way, I am feeling like 2018 started off on a rough note, the same note that 2017 ended on. I pretty much dropped off the proverbial map back in October 2017 so I may as well start there with one of my updates.

Ironically during dysautonomia awareness month I learned from a team of dysautonomia experts based in Texas that my dysautonomia was severe. I was prescribed three medicines to try much to my chagrin (I was to introduce one at a time, in the hopes I would eventually be able to take all three). They listened as I shared that my body didn’t like drugs but they insisted that I needed them to try to get more vertical. They didn’t understand how I wasn’t in a wheelchair. For me, I am either semi-vertical or bedbound, I will not be bound by a wheelchair – unless the few times you find me in an airport. With much convincing from my family and approval from my local specialist, I relented and decided I would try two of the three (as only two of the three were approved by my insurance – the third would require me to go into heart failure first) medicines for my Postural Orthostatic Tachycardia Syndrome (POTS).

So back to the medicines, one was called Mestinon also known as pyridostigmine bromide. If you Google Mestinon, it comes up as a medicine used to improve muscle strength in patients with a certain muscle disease, myasthenia gravis. It works by preventing the breakdown of a certain natural substance, acetylcholine, in your body. Acetylcholine is used in both the sympathetic and parasympathetic nervous systems. It is theorized that Mestinon will increase parasympathetic nervous system activity and therefore decrease the heart rate in POTS patients.

So back in October I started the first experiment with Mestinon; I started on the lowest dose of 30mg for a few days, taking one tablet at night. Then decided I could manage two tablets, one in the morning and one at night. That’s when I realized “Oh no, my body was actually not tolerating the medicine.” So I went back down to one per night and realized that I still couldn’t tolerate the drug. Let’s see: my head raged more than usual, I had stomach cramps for the first time in my life (I hadn’t even been subjected to cramps after twenty years of IBS nor did I suffer from monthly menstrual cramps), my heart rate dropped to under 40 (that’s called bradycardia and can be dangerous), and I had an increase in itchy episodes. My list of issues could go on but between my stomach and my heart rate I knew that the Mestinon had messed me up. I persevered for two weeks before my specialist told me to stop taking the drug; it was clear my body couldn’t tolerate it, it was making me worse, and my heart rate was dangerously low. Months later, the stomach cramping, though not as severe, is still haunting me.

While this may be another patient’s wonder drug, it was a nightmare drug for me. Actually nine out of ten drugs is a nightmare for my body. So if you’re thinking of trying Mestinon don’t let my review stop you. This isn’t the first POTS related drug I have tried, I have tried many pharmacologic options since 2015 and all have failed to help me (to name a few: Florinef, Propranolol, Modafinil, and Midodrine – all have a different purpose – and even prescribed salt tablets wreaked havoc in my body). (Note: All of these drugs are to treat symptoms not to cure POTS. Furthermore, they were developed for other conditions not specifically for POTS and are therefore used off-label. There is no drug on the market designed specifically for POTS to my knowledge, hopefully one day that will change.) For now, it appears I am paralyzed, not sure whether I should look back or look forward. It is hard to keep trying new medicines when they do so much damage. But I can’t move forward without sharing my past. So here you have my messed up Mestinon experience and why I was so reluctant to try yet another drug since most experiments seem to cause more harm than good. More medicine anecdotes from 2017 to come…and all are anecdotal nightmares much to my dismay. #sickbutstillsassy

“Bye, Felicia!”

Healthy or not, holidays can be a stressful time for people. Thinking of and purchasing the perfect gifts, getting one’s home ready, preparing for house guests, traveling, and the list goes on. This list for a healthy individual is overwhelming – and often more stressful when family dynamics that are not ideal are put into play. But when you add “not healthy” into the mix, it can be a holiday nightmare.

So a few notes for my fellow patients: be gentle on yourselves, know it’s OK to bail or say no, allow others to help you, and know that all moments can be classified a “holiday” when your body is cooperating so not to worry if you actually miss the real holiday! (I’ve learned the past few years to let go and not plan after missing many holidays and birthdays. It’s hard to not have expectations and to miss out but I have to remind myself to enjoy the moments when my body does cooperate even when they don’t fall on the actual holiday. Having just missed out on Thanksgiving, I understand being bitter but it doesn’t change anything or bring anything back, just means I have to “celebrate” another day when my body is more cooperative.) And a few notes for loved ones, family members, friends, and caregivers of the chronically ill: we truly are sorry if we didn’t get you cards and/or gifts this year, please cut us some slack, please continue to invite us out and we’ll join the festivities if our bodies allow us to, and thank you for your continued patience with us – we are forever grateful.

Needless to say 2017 was not the year I had in mind when I was bidding 2016 farewell. I thought 2016 was bad, never did I imagine 2017 could be worse. As always, I will not have resolutions for the coming year, just new hopes. As I bid 2017 adieu, I will not hope for a better 2018 instead I will just hope for a year that is not worse. I’ve set a low bar in the hopes I won’t be disappointed with 2018. Insert the phrase from Friday: “Bye, Felicia!” 2017, you sucked but hopefully 2018 won’t suck as much! Happy holidays! Happy and healthy 2018 y’all! #sickbutstillsassy