I didn’t know fatigue came with an age requirement….

So…. I’ve been feeling pretty miserable since my last post.

24/7 migraines combined with nausea and vomiting, extreme fatigue, and another POTS flare. (This time with low bp on top of the tachycardia.)

If I’m being honest, the worst part is the fatigue. We’re talking deep down bone tired. “Can barely stay standing” tired. “Don’t give a rats A** about anything” tired. “Would volunteer for a coma” tired. Fatigue that I can’t even admit to my friends, family, and co-workers, because apparently I’m “too young to be tired.” Admitting that I’m tired only results in a series of lectures where all I can do is smile and nod, because I know I “look” healthy and they don’t understand.

too young to be tired.

I tried some drastic diet changes with no luck. (Mostly high carb raw vegan meals which used to help with fatigue in the past). I tried increasing my iron and B vitamin supplements. I also cut way back on my activities and exercise so that I could rest and save my energy solely for going to work. Nothing I normally do for fatigue is working, and I confess that I’ve gotten very desperate.

Desperate enough to start playing with monsters. Specifically….. caffeine during the day, and when necessary alcohol at night.

I call caffeine and alcohol “monsters,” because both interfere with nerve function and are typically forbidden in patients with nerve disorders. Caffeine is a stimulant which speeds up the chemical reactions between nerves, and is also a vasoconstrictor. Alcohol is the opposite, a depressant which slows down nerve reactions, and is also a vasodilator. I can speak from personal experience that caffeine is dangerous for patients with Dysautonomia/POTS. If I accidentally have too much, I crash and have disruptions in every major bodily system, and it can take weeks for me to recover. I don’t know what happens if I have too much alcohol, because I haven’t crossed that line yet, and I don’t ever intend to.

I’ve found that my current tolerance for caffeine is about 10mg. The same amount found in 1 cup of decaf coffee, or 1 Hershey’s chocolate bar. However, I need something more reliable than snacking on chocolate throughout the day. We looked for low dose caffeine pills, and couldn’t find any! The lowest dose we found was 100mg, most are 200mg (the same as 2 cups of coffee), or higher up to 400+mg. Then by luck we found these caffeine “mints” at GNC. Each are 20mg, and can easily be cut into 10mg halves. If I take one half roughly every 2 hours throughout the day, and it gives me enough energy (or at least the illusion of it) so I can get through the day. I’ve found that because it’s a vasoconstrictor, it also helps raise my low bp, reduces my blood pooling in my legs, and hides my joint and migraine pain!

It comes with side effects though…. The caffeine raises my heart rate and makes my tachycardia worse. It also seems to increase my sensitivity to light, noise, smell, and touch. The noise sensitivity in particular is a big problem since I cut my hair to a pixie, which means I can’t wear earplugs without other people noticing. I definitely wasn’t thinking about that when I got my hair cut, BIG mistake on my part…. and now I’m planning to grow it out to a bob or “lob” as soon my roots finish growing in.

Alcohol is pretty much the exact opposite of caffeine, and I’m also very sensitive to it. I use it as a sedative at night when I have a migraine so painful I can’t sleep. I mix 1-2oz of wine with 4oz of fruit juice, and it both sedates me and cuts down on the migraine pain so I can sleep. However, it also drastically lowers my bp and hr. Especially if I have it on an empty stomach, it can make me feel very dizzy like I’m about to pass out. So a word of warning I guess to other POTS patients…. if you have low bp and want to try wine, start small and have it with a BIG salty meal!

On top of my “experiments,” my primary wrote me a prescription for Scopolamine patches, to help with my nausea and vomiting. I don’t tolerate anti nausea meds by mouth, so the patches were the next best option, and I definitely recommend! My meals lately tend to be bland, chicken, eggs, rice, plain veggies, ect… but I’m keeping most of them down.

I’ve also increased my protein as much as possible to help build muscle to control my POTS, since I don’t have the ability to exercise regularly right now.  I’m still having blackouts on a daily basis, but at least I haven’t lost any muscle tone.

Anyone else have suggestions?!!

 

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Upswing

I’m happy to report that I’m feeling much better since my last post. Gosh it was months ago, I always mean to sit down and write a post, but I end up spending 5 hours on Pinterest instead. Not even kidding, I’m a major Pinterest addict, it sucks the life right out of me.

Anyway, right after my last post I got my hair chopped to a pixie. It was the next day actually, I couldn’t stand the asymmetrical thing, it looked awful. The pixie looks 100 times better, but to be honest, I still have mixed feelings about it.

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I’ve had a million compliments on it, from friends, family, coworkers, customers at work, and even random strangers. I still miss my long hair though, and I don’t like the way short hair looks. Every time I see a girl walk by with waist length (or longer) hair, I instantly feel jealous.

However, I admit that chopping my hair has significantly helped my migraines. I’m still having them on a daily basis, but they tend to be less painful! Sometimes lately I don’t feel any pain at all with my migraines, I only have the secondary symptoms. (Secondary symptoms are things like dizziness, nausea/vomiting, light and sound sensitivity, auras, ect.) My migraines can still be severe, obviously, but at least they are not painful.

What I love most about having a pixie though, is that it is low maintenance. At the most I might straighten my bangs and thrown in a bobby pin before I leave the house, but that’s it. I don’t have to waste precious energy on my hair when I’m not feeling well. I used to easily spend an hour or more on my hair everyday, just trying to find the least painful way to put it up… now the most I might spend 3 or 4 minutes on my hair in the morning.

My blackouts and tachycardia are much better too… (not because I cut my hair, don’t be silly), but I started swimming again to build muscle like I used to do in physical therapy. My plan was to take some swim classes at our local community center so that I could be closely supervised by an instructor in case something happened. Unfortunately, I couldn’t find any instructors that were willing to deal with my crazy work schedule though. So I just went to the pool on my own, and got started.

It was REALLY difficult at first. The hardest part was just trying to breath. At first I had to keep my head above water at all times, because I was breathing so hard from the tachycardia. I couldn’t put my face in the water and rotary breath like most swimmers do. In fact I still struggle to rotary breath, even now that I’m feeling much better, but least I can do it for a couple of laps!

The most effective swim exercise (in my opinion) for POTS, is just using a kick board. By holding onto the kick board, it keeps your head above water at all times so you can breath, and all the kicking as you swim back and forth helps to build serious muscle in the lower body. (For those who don’t know, building muscle, especially in the lower body, is very effective in controlling POTS. As your body builds muscle, it also builds new blood vessels and nerves which improve circulation and help prevent the blood from rushing to your feet when you stand up.) Not to mention, it makes your legs and butt look good! (Just saying).

After about a month of swimming 2-3 times a week, my blackouts stopped and my tachycardia and shortness of breath are barely noticeable. I’ve been able to go back off the Propranolol, start using ladders again at work, and start horseback riding again!

Anyone else tried swimming for POTS? Lemme know how it worked for you!

Powered By Salt!

So, I have good news and bad news.

Good news is my vomiting stopped. This means I can have all the fluids and salt that I want. Basically I’m having between 6-9g of salt a day, with as much fluids as possible. I aim to have 1-2g with meals, 1/2g between meals, and 1/2 gram with morning and evening meds.  Plus additional salt as needed.

Sometimes when I’m eating lunch at work, I hear other employee’s talking about trying to eat healthy, lowering their bp, cutting out salt, ect. Meanwhile I chuckle to myself as I discretely pour 3 packets of salt on my already salty food.

I feel so much better taking the salt, especially when I have it at regular intervals, (2 hour intervals work best). My POTS is a little better, my migraines are a little better (sometimes taking a salt tablet helps with the pain even more than a big dose of Aleve.) Mostly though, I have more energy! I think low bp can make you feel tired. So eating lots of salt and raising my bp to “normal” levels, gives me more energy. Or at least the illusion of it anyway.

Of course having lots of salt has downsides. Such as bloating/water retention. My clothes are fitting tight, my face is a little more puffy than normal, and I’m struggling not to feel “fat.”

Unfortunately we had to increase my Proproanolol some more, and its definitely had an impact on my migraines. I’m really struggling with them, and so I’m doing everything possible to avoid triggers…. which led me to cut my hair short.

People usually talk about the “weight” of long hair causing migraines, but for me the weight doesn’t bother me at all. The problem is ponytails, buns, and braids tend to cause migraines instantly, unless I manage to put them in perfectly with no tension spots.  (Which happens maybe once out of every 100 tries.)  Yesterday was the last straw. I put my hair in a french braid to go to work, and 10 minutes later had a migraine starting. I tried re-braiding my hair, but it was too late. I put on a smile and pretended everything was fine all day at work, then came home feeling sick and exhausted.

Is going through all that pain almost everyday worth it? Just so that I can put my hair in “cute” braid? No. Its really not.

So I went to the salon, (much to my dad’s dismay), and got my hair cut into a partial pixie/asymmetrical bob.

 

I’m trying really hard to love it. But I don’t. I think it doesn’t look right with thick, damaged, fried hair that refuses to straighten. Not to mention my hair is a strange color, my roots are on the greenish side, while the lengths are a dingy ginger blonde. (Its as close to my natural color as I could get.)

Thankfully my hair grows really fast, between 3/4″ and 1″ a month, depending on what I eat and what supplements I take. Once my roots get to 3 inches long, I’m planning to go for a full pixie. Then maybe I can experiment as it grows out and find a short hair style that works.

Anyway, I promised some updates pics of Leo, these are pictures I took weeks ago. I wish I had more, but we’ve been cooped up in the house since winter started.

 

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When appointments go south.

When my new GI doctor walked in the room this morning, the very first thing he said was – “I don’t think this doctor/patient relationship is going to work, and it might be time to terminate.”  (This is our second appointment).

Apparently my dad and I didn’t leap for joy when he entered the room, and so he deduced that were putting up barriers and being uncooperative. I had a migraine and probably didn’t look too chipper. I explained that I wasn’t feeling well, and my dad tried to communicate how difficult it was for me to even walk into the office that day. The doctor just didn’t seem to get it, and also claimed that in our first appointment we were totally against doing more testing or trying new medications, and that is not true! (I was cautious, and explained that Ive already had XYZ test done, or tried XYZ meds. He did suggested some new meds and I was very interested in trying some of those.)

After much arguing the doctor moved on… and said that he reviewed my records and some information was conflicting, and that no one really seems to know what is going on. Unfortunately this is true, none of my GI doctors in the past had a good understanding of Autonomic Dysfunction. I’ve also had several diagnoses in the past like IBS and Lactose Intolerance that turned out to be false.

My new doctor doesn’t seem to have a good understanding of POTS or Dysautonomia either, and questioned my diagnosis of Autonomic Dysfunction. He acknowledged that I have POTS, and that I have proof since I failed both my Tilt Table Tests, but wasn’t ready or willing to connect my POTS and GI symptoms. He reasoned we have proof that one part of my ANS is malfunctioning, that doesn’t necessarily mean that the part controlling my GI tract is malfunctioning. Technically this is true, and not all POTS patients have GI problems. However, if one area of the ANS is malfunctioning, likely other areas are malfunctioning too. The majority of POTS patients complain of a wide variety of symptoms. Migraines, GI problems, sleep issues, and temperature sensitivity/regulation are probably the biggest and most common categories. If he had done even a quick internet search on POTS he would have quickly seen a correlation between POTS and GI problems.

There was more arguing, shouting, and maybe a few swear words involved.

Today he told me he went over my records and my motility studies in the past were all normal, (we explained all of this in my first apt), and he wants new motility studies done. He wants proof to justify writing for prescriptions, tube formula, and scheduling me for a J-tube surgery. I understand his point of view, but in my case a motility study is not going to give him the proof that he wants… On a liquid diet everything tends to move through fine. My GI doesn’t become sluggish unless I eat solid food over a period of several days. Over this time my GI tract becomes increasingly sluggish until things stop moving altogether. When this happens my motility problems can be so severe that I eat things and vomit them up 24 hours or more later. All of my motility studies in the past were normal and done on a liquid diet, or after being thoroughly cleaned out with laxatives so that there is no food in my system causing it to be sluggish. I offered to attempt to eat food for a few days before the test (not an easy task with my vomiting), but he said no and he wants to see how my GI track behaves without any interference from an obstruction (such as being backed up with food). Again, I understand his point, but I already had multiple motility tests under the same circumstances. If he wants documented proof of why I can’t eat, there needs to be food involved!

After we explained the situation (again), he thinks I might be having lower GI motility problems, not upper. In other words my intestines become sluggish first, and once my intestines are backed up it causes my stomach emptying to be delayed. He is probably right, it seems to happen in that order when I try to eat. I also asked if severe constipation could cause the same problem, and he said yes. So in theory my motility problems could just be entirely obstruction related.

He offered to call my previous GI doctor (who diagnosed me with Gastroparesis), and depending on how the conversation goes he will schedule me for an upper motility test and a J-tube surgery. If the upper motility test is normal (which it will be), he said he will focus on my lower GI and that will help indicate which medication he should prescribe. I’m unsure of whether he will agree to continue writing my prescriptions or schedule a J-tube surgery if my motility tests are normal. I told him that my nose bleeds frequently from the tube (it also sometimes gets swollen, and I may have a sinus infection.) If I need to take the tube out I will get dehydrated quickly and be in the emergency room. He didn’t seem to have a problem with this.

He did tell me that he believes me about my symptoms, and that I would have to be crazy to tolerate having a nasal tube if I didn’t need one. I’m hoping that he won’t write me off, or delay the J-tube surgery for too long.

My dad and I don’t know what to think. On one hand he has some good ideas as far as treatment options go, and has suggested things that no other doctors have. He insists that we should never “settle” and stop trying to make progress when it comes to managing my symptoms. The points he makes are usually logical, although sometimes ignorant or uninformed. He is eccentric, loud, pushy, unprofessional, and rude. At the same time he seems to care about me and is willing to go out of his way to help me.

Sorry this post is so scattered, I still have a migraine, it took all day just to write and fix the spelling errors.

I don’t believe in fairy tales

I’m feeling like a complete mess right now. I saw my gynecologist yesterday and we went over my lab results. My FSH levels were normal, but my LH was very high. That + my high insulin level + history of irregular periods led her to diagnose me with Polycystic Ovarian Syndrome. She said that women with PCOS tend to have a certain look about them (being overweight and having facial hair), and I’m not overweight…. but I do get the facial hair. I can’t believe I’m saying this on the internet, but I do get “whiskers” – a genetic gift from my mom. I’m VERY self-conscious about them and would likely die a horrible death of embarrassment without my tweezers.

Anyway, she said that PCOS causes high insulin levels which can either cause hypoglycemia or put you at risk for diabetes (depending on the patient). My dad and I have been trying to check my blood sugar, especially since I do get dizzy often between meals and sometimes it feels like I’m going to pass out if I don’t eat. We’ve only checked it a few times and if anything it tends to get low, but the lowest reading we’ve caught so far is only 70. Not exactly dangerous.

Still, I admit I’m confused. Both hyperglycemia and hypoglycemia are symptoms of Autonomic Dysfunction. Hormonal imbalances and irregular menstrual cycles are also symptoms of Autonomic Dysfunction. Diabetes also runs on both sides of my family. So do I really have PCOS? Or is it all just my ever changing Dysautonomia Symptoms? Or I am I heading towards diabetes and we just haven’t caught a high blood sugar reading yet. Why does everything have to be so complicated?

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My migraines are out of control despite my best efforts. I can’t figure out how to squeeze in my exercise. Earlier this month I tried walking 1 mile on the treadmill (a normally easy workout), and ended up with a 6 day migraine. Its not worth it. Its just not.

My POTS continues to get worse since I can’t keep up with my PT, having more dizziness, more tachycardia, more blood pooling, can’t stand or walk for more than a few minutes. But as debilitating as my POTS symptoms can be, my migraines are much worse. There’s no way to win really, its just a question of which sucks more? Being constantly Potsy? Or having a never ending migraine?

Either way I spend most of my day either laying in bed, curled up in my arm chair, or laying in a Potsy heap on the floor. I’m stuck at home even more than usual, and not usually feeling well enough to get any decent chores done or do anything in particular.

The problem with spending everyday in spoon-conservation-mode is that it gives you way too much time to think. Even the normal activities like knitting that I normally do to distract myself just wear me out. So I lay there and let my mind wander because its too physically exhausting to fight all the negative thoughts that intrude all day long.

I think that chronic illness and mental illness are connected, especially in cases where the patient becomes home bound and looses all or most of their connections with the outside world. I’m not saying that mental illness causes chronic illness, but more often the other way around. It doesn’t happen all at once. Its a slow wearing away process like waves beating against a cliff. All the stress from being physically sick. + the stress of cabin fever and claustrophobia from being continually trapped at home. + The stress of living in near or total solitary confinement. + The stress of having no structure to your day. Eat, sleep, survive, repeat. All the days blur together because they’re pretty much all the same, and you have no meaningful sense of the passage of time. + Your brain turning to mush after years of being a professional couch potato. + Illogical feelings of guilt. Maybe its your own fault you’re sick. Maybe you deserve to be sick because you’re a terrible person. Or you’re a terrible person for being a burden on your friends/family. + Feeling useless and worthless, because you’re dependent on others and basically not good for anything. + Depression for all of the above reasons and illogical sense of “doom.” + Anxiety for all of the above reasons and illogical fear of everything.

I think the first few years of being chronically sick are the worst. After a few years of living in various degrees of hell, I think your mind gives up and goes into survival mode. You find strange ways of coping with the stress or tricking your brain into believing the isolated bubble you live in is perfectly normal. I cope with the cabin fever/claustrophobia by spending almost all of my time in the upstairs living room. Its the biggest room in the house, very open with lots of windows, big sliding glass doors that lead out to a deck, and big double doors in the foyer that I can open in nice weather. Its the one place in the house where I feel like I can “breathe.” I somewhat loath all the other rooms in the house. They make me feel like I’m suffocating.

I cope with the solitary confinement by watching tv, listening to music, or watching youtube videos. Being able to hear someone’s voice and even see them on a video helps hold me together mentally in a way I can’t really describe. I also obsessively check my email, and I practically live on facebook. I soak up every word and picture, because its my only connection with many people that I haven’t even seen in years. I even have mental conversations where I pretend that I’m talking to an old friend. That last one might sound a bit crazy, but I don’t care. It works.

I cope (slightly) with the lack of daily structure and feeling useless by having hobbies. Mostly right now I knit, but I also sew and crochet. Getting a significant amount of work done makes me feel like at least I worked hard and did something. It also helps to distract me from negative thoughts, and keep my frazzled brain from atrophying. There is quite a bit of math involved in knitting and the more complex the project the more concentration it takes. 

Having a good daily cry doesn’t hurt either. But its not enough, none of it is.

I’m tired of trying to fight all my doubts, I’m tired of trying to hold it together, I’m tired of pretending that someday everything will magically be ok. I don’t believe in fairy tales anymore. There is no price charming on a white horse to rescue me. There is no true love kiss that will lift the spell. There is no secret gateway to a magical kingdom where the people never get sick, or a unicorn who will heal me with a touch of its magic horn. Even if someday I do get better and I get some portion of my life back it will never be the same. I’ve been broken and put back together so many times I can’t even recognize myself. I am covered from head to toe in holes and cracks. There are pieces put back where they don’t belong. When I couldn’t find nails I used glue. When I couldn’t find glue I used tape. When I couldn’t find tape I used band aids. I am not ok. I am tired. I am broken. I don’t know what I’m supposed to believe in. I don’t even know what I’m supposed to hope for or dream for. I forgot how to dream. Thats a scary place to be in your life when you stop dreaming.

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Botox for Migraines (update 3)

Today is kind of special, since its the first day this year that I’ve really been able to open all the windows. The fresh air and breeze is nice, but we do live by a busy road and every few minutes a noisy truck or motorcycle comes roaring by the house and kills the good mood. The pretty view of the hills behind the house, and open field in front of house, definitely make up for it though. At our old house there was nothing to look at outside except even more houses, and it was downright depressing.

Well no, I take that back. We did have a nice birch tree out in the front yard that I loved to watch during the summer. Birch trees are my favorite, because their leaves are shiny and reflective on one side. That means when its sunny out, and there is a nice breeze to ruffle the leaves, birch trees “glitter.” Its a very pretty and peaceful thing to watch. We don’t have any Birch trees at our new house, but thankfully some of the neighbors do.

Anyway, today has been a pretty good so far aside from some dizziness and blackouts. I took a (much needed) shower then spent the morning reading. This afternoon I experimented with some recipes in the kitchen… (I’ve always hated carrots, but recently I’ve discovered that they can indeed taste good if you cook them right.)

My favorite recipe so far is glazed baby carrots with butter, honey, dill, thyme, and salt. I cook them over medium heat in a frying pan (without a lid) for 20-25 minutes, and they come out fantastic. Whats even more shocking to me is the fact that I can eat them! I believe I’ve made even more progress with my GI symptoms, and I would say that my diet is maybe 50% solid and 50% liquid/mushy. Also, I’ve been able to eat more and more difficult foods (veggies for example, or certain types of granola bars and protein bars.) I still can’t handle raw veggies or salads, or eat nuts/seeds whole, and I still throw up several times a week, but I think I’m doing pretty good.

I spent the rest of this afternoon listening to music and finishing a knitting project. I’ve been working on a pair of cabled long fingerless gloves (arm cosies) for almost 2 months (should have taken 2 weeks) because I kept getting sidetracked with other projects. I finally finished seaming the left one today, and I think that if I make them again I’ll just knit them in the round to avoid seaming altogether now that I’m familiar with the pattern. I decided to have some fun and take silly pictures when I was done, most of which would give small children nightmares lol.  Fingerless gloves are probably my favorite knitting project since its something practical that I will actually use. My hands (and feet) are always freezing thanks to my POTS, but gloves with fingers are just an annoyance since I have to keep taking them off whenever I need to use my hands. Obviously these gloves are just obnoxious since its only my hands that get cold not my entire arms, but I couldn’t resist. Plus they might be nice on a semi-chilly spring or fall day.

This is the free pattern from lionbrand.com Although you do need to make an account to view/download the pattern. Arm Cosies.

Also, they came out a bit loose on me since I’m so skinny, next time I will use smaller needles. They are made to fit average adult women’s arms, so if your arms are twig-ish like mine, I would adjust the pattern a bit.

To a healthy person with a normal life my day probably sounds really dull, but this was actually a great day. If you think my day was dull, then you don’t know what dull is. You have not yet experienced what it is like to be sick and bed/couch bound for days on end… till the very idea of being able to take a shower, cook your own food, or sit upright so that you can watch tv while you knit becomes exciting. Only then… my young grasshopper… will you know what dull is.

So what does all of this have to do with my migraines? My point is they’ve been (mostly) better since my last post. I’m still getting migraines almost daily, usually when I exercise or after physical exertion of some sort, like doing chores, going shopping, or going to church or a doctor’s appointment. At least the migraines are gone in the morning when I wake up and I get a nice brake before the next one comes, so that every day is not just one long continuous migraine. The neurologist said that it can take a little while for the Botox to start working, so I’m hoping that this means it has started to kick in.

Overall I’m still kind of shocked at the severity of migraines and how bad they have gotten over the last several months. At the moment I’m “back to normal” in the sense that the migraines are usually gone when I wake up, but I can get a migraine at the drop of a hat. I’m much more sensitive to exercise as a migraine trigger than I normally am. Even “safe” exercises like pilates or walking can bring on a migraine. I’m getting extremely frustrated between my pathetic attempts at exercise, the resulting migraines, and at my POTS symptoms and joint problems which are beginning to get out of control since exercise/physical therapy is one of the ways that I manage both. I’m also having more issues with my blood pressure dropping, which can happen even when I’m sitting or laying down, and blackouts are becoming a daily problem again. I’m re-learning to love salt, but its always a temporary fix, and I believe that for some reason I’ve become more sensitive to salt than I used to be. Taking too much salt too fast, or taking it without enough fluids (although it fixes the dizziness) can actually trigger a headache or migraine for me.

I feel like I’m ending a overall positive post on such a negative note, but its a mashed potatoes kind of day. You know, taking the good stuff with the bad. Or the bad stuff with the good if you’re pessimistic like me.

Mashed potatoes is actually a really bad example for me, since I grew up on the instant stuff. I would never eat “real” mashed potatoes, because I couldn’t bring myself to gag down the lumps. I couldn’t imagine why anyone else would want to eat them either. You guys get my point though right?

Happy (slightly late) Easter.

Do not be afraid, for I know that you seek Jesus who was crucified. He is not here; for He is risen”

from- Matthew 26 NKJV

Botox for Migraines (update 2)

So its been almost 2 weeks since my shots, and I think I have noticed a tiny difference. Normally when I have throbbing pain with my migraines it feels like being stabbed on the side of the head. Now its much more gentle. That’s the only difference so far though, and if that is as good as it gets, I don’t think its worth getting a boatload of painful shots every few months. The neurologist said the effects build over time so I’m trying to be patient, but so far I’m not impressed.

I’m honestly freaking out right now and I don’t know what to think. My migraines have never been this bad. EVER.

I don’t know what happened. I was getting better-ish, I was doing good-ish.

I thought maybe I finally got off this crazy roller coaster and things would slowly but surely start getting better. I hate being reminded that I’m still sick. That my chances of ever having a “normal life” again someday are pretty darn slim, and even if I do, I’ll have to live with the reality that the floor could be ripped out from under my feet at any time.  That any progress I make in my life, no matter how hard I work for it, is probably temporary.

I go to bed with a migraine, and I almost always wake up with one. I’m rarely leaving house, because I’m too sick most of the time to go anywhere, and even when I feel “not too bad” I’m afraid to risk it. I know that if I go my migraine will get worse, and I could pay for it for several days. Sometimes its just not worth it.

As you can imagine, this has put a major kink in my exercise routine. My goal was to run a 5k this spring, and a few months ago I managed to run a little over a 5k. But its impossible to run with a migraine. My goal right now is to simply not loose the ability to run 1 mile without stopping. I worked really, really, really hard to be able to run a mile. I’m not gonna give that up without a fight. Even if I only run 1 mile, once a week, its better than nothing at all. Finally having my own treadmill now really helps, since I don’t need to wait for my dad to take me someplace to run. If I happen to be feeling good, I can seize the moment.

For the most part though, I settle for a short walk, or Pilates if I can’t handle walking, or nothing at all if I’m too sick to even think about exercising. I’m beginning to notice my POTS symptoms a little more. I’ve been having blackouts here and there, or getting dizzy when I stand. Nothing big yet.. but exercise is one of the key elements in managing my POTS, and I’m afraid things are only going to get worse.

Nausea is really getting the best of me lately. I’m not used to dealing with nausea, at least not for long periods of time. Even when my vomiting was bad, there usually wasn’t any nausea along with it. Stuff always just came up. I’m having a really hard time eating and drinking, not because of my GI problems, but just the constant nausea everyday that comes with my migraines. Even when I’m not particularly nauseous, its like I have no appetite whatsoever. The idea of eating anything just kind of makes me gag. Sometimes I get hunger pains and feel weak and lightheaded, and so I know I’m “hungry,” but I’m still nauseous or have no appetite. That doesn’t even make sense. How can you be hungry and and nauseous at the same time? I’m trying my best to eat and drink, because I know I’ll feel sick in other ways if I don’t. But how do you force yourself to do it?

I’ve decided to start tracking my migraines too in my calender along with my irregular periods which I already track (my last one came over a week early), and some other symptoms too. My doctors have tried to get me to keep a symptom log in the past, and I made a few half-hearted attempts but never really kept up with it. Just writing an “M” for migraine in my calender is much easier. And I put a number 1, 2, or 3 depending on how bad it is. A 1 migraine is where I’m still (sort of) functional. The pain isn’t that bad and I would normally dismiss it as a headache, except I also have the dizziness, nausea, auras, and extreme sensitivity to light and sound. A 3 Migraine is where I’m curled up crying and begging someone to kill me. A 2 is somewhere in the middle. Today is obviously a 1, or I wouldn’t be writing this blog post. Most of my migraines are 1’s and 2’s. If I do get a 3, I usually brought it on myself by repeatedly overdoing it and trying to spend spoons I don’t have. Anyway, I’m hoping to somehow notice a useful pattern by tracking them. Or at least be able to answer my doctor’s questions more easily.

Botox for Migraines? update

So…. I saw my neurologist again last Friday for the Botox shots. I’m not going to lie. They hurt. ALOT. I was surprised how much they hurt, I really didn’t expect it to be that bad. After all I’m pretty used to needles and I even got a tattoo last year, which by the way, hurt less than the Botox shots. I told the neurologist this, and he said he found that hard to believe, but its true!!! My tattoo hurt less than the shots.

For several hours afterwords my neck felt really weak and it was hard to hold my head up, and I was terrified that I was going to be stuck with a weak neck for 2-3 months until the effects wear off. It didn’t last long though and by evening I was fine.

The information they printed out and gave us at the office says that it takes 3-7 days for the effects to kick in, and its only been a few days and I haven’t noticed anything different. My migraine which started on the 19th of last month finally ended on the 31st. (One of the longest I’ve ever had.) I had ONE lovely migraine free day… no pain except for stomach aches.. no nausea except when I took my meds…  no dizziness except when I exercised… no weird vision problems or auras… and my sensitivity to light and sound ect. was mild.

Then woke up with another migraine this morning. Figures.

If I sit still in a quiet room with dim lights it isn’t that bad, as soon as I get up and start moving around I get a sharp pain on the right side of my head, and the dizziness, nausea, and everything else immediately follow. I hate being restricted to a chair/bed/couch like this. I have laundry to do. I need to exercise. I need to eat, which means cooking and doing dishes. I need to shower. I need to feed the cats. I should probably water the plants too, before they shrivel up and die. I have a difficult book to read for my online English course. I need to need to turn on some music or the tv, even though it hurts, because the silence in the house is making me crazy. And somehow when my dad gets home this evening I need to go to the grocery store.

I may not “have a life” anymore, but I still have things to do. I make lists and I set goals and I take them very seriously, because its the only structure in my day that I have left, and it helps me keep my sanity. Its beyond frustrating when I know that I won’t get to everything on my list, I hate needing to save my spoons and needing to pick and choose what things are the most important to me.

I’ll just have to wait and see whether all those shots were worth it. On one hand, it would be amazing if they helped, on the other… Its just embarrassing. I mean, lets just say they do work, how I am supposed to explain to people that I get Botox shots for my migraines. It just sounds crazy. And most people already either think I’m nuts, think I’m a freak, or can’t make up their minds. This isn’t going to help my nonexistent social life a bit. Truthfully I’m not even sure I want them to work. I mean of course I want to get better and stop having migraines, but I’m tired of being labeled crazy in the process. I’m sick to death of the indignant looks, the raised eyebrows, the eye rolls, the mocking tone of voice. Why can’t someone just invent one of those bio beds from sci-fi movies? You know, where you lie down, the lazer thingy slowly scans you and fixes everything, and 10 seconds later you’re fine? That would be awesome! 10 seconds, and anyone with a chronic illness could have their life back. I vote bio beds!!

“Too much sanity may be madness, and the maddest of all, to see life as it is and not as it should be.” – Miguel de Cervantes

 

So my Neurologist told me to get Botox. No joke.

I was a bit rebellious last week…  My dad works as a handy man, and I was desperate to get out of the house, so I went with him and helped him grout tile, paint, fix cracks in the walls… and watched him install a faucet and a toilet. I wouldn’t call any of that “fun,” but it was better than moping around the house going crazy.  Yes, I am literally so desperate that I would rather grout tile than be stuck in the house. I need a life.

So anyway, I honestly thought that I was fine. I mean I took breaks whenever I felt sick, and I tried not to push myself too hard. But early last week I also went to doctors appointments, to the store, to church, and I even went to the community center to run. I don’t know what I was thinking. I slipped into this “I’m Invincible” attitude, and if I just keep going my body will adapt. My body quickly put me back in my place though, and I crashed on Wednesday night after church. I had a migraine that lasted a week, and its still lingering.

I just saw a neurologist last week about my migraines actually, because they’ve changed the last few months. The pain used to be on the front of my head and my temples, but now it tends to be only on the right side of my head, and sometimes behind my eye. Ibuprofen used to help the pain a bit, but now it makes it worse, especially when the pain is on the right side of my head. Also, the migraines are lasting much longer, days or a week, (like the one I’m having right now for example). I’m already taking Topamax, but it seemed to wear off a long time ago and if I increase it, my migraines actually get worse. I am also already taking Propranolol, which he said could help with these types of migraines, but I’m taking it along with Florinef for my POTS symptoms, and I can’t increase it anymore.

He said there were a few more meds that I could try, all of them are anti-depressants though, and regardless of how small the dose is, I don’t want to mess around with those types of meds.

So then he said something I honestly wasn’t expecting…. he told me I should get Botox. At first I was like “What!?” But he explained that the Botox treatment works by paralyzing the muscles around the head and in the neck which can help prevent migraines, and it has helped many of his other patients who also have chronic migraines. The shots have to be redone every three months, but he said it would be covered by insurance, and sent me home with information to read. At first I was pretty freaked out by the whole idea, but I’ve tried crazier things, so why not?

The thing I’m mainly worried about, is that the Botox might only help with the pain and not do anything for my other symptoms (like dizziness, nausea, vomiting, vision problems, auras, increased light and sound sensitivity ect.) that come with my migraines. All of those can actually be worse than the pain itself, and sometimes the pain is a good thing, it can act like a warning that tells me when I’m overdoing it. As I said earlier, I can be reckless, and I need all the warning signs I can get. Something big and obnoxious like “Take A Break MORON, Or You’ll Regret It For A WEEK!!!” would have been nice. I’m just saying, not all pain is bad.

So I’m supposed to go in tomorrow for the shots, and I’m a little nervous, but we’ll see how it goes.

On a more random-ish note, I have a hard time wearing ponytails now cuz they give me headaches, or make migraines that I already have worse. My hair isn’t very long, so its not heavy, its just that they pull constantly on one spot on the head and its unbearable. I taught myself how to french braid, and braids don’t bother me a bit since the hair isn’t being pulled in a particular spot. I’ve been experimenting with buns too, since they tend to hurt less than ponytails for some reason, but I can’t get them to stay in with elastics, and my hair just isn’t long enough yet for hair sticks. Today I tried something new though, I bought a hair fork online and it is probably the best money I ever spent.

Photo0484

I seriously can’t put my hair up in a bun or similar style any other way. I have no idea how other girls do the whole messy bun thing with an elastic, or put their hair up in nice neat little bun with bobby pins. The hair fork was super easy though, it doesn’t hurt like a pony tail, it stays in all day, and works great even though my hair isn’t that long. Just thought I would share, in case anyone else is having the same ponytails-hurt-braids-take-too-long-my-hair-won’t-stay-in-a-bun dilema.