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I’ve been working on this post for so long that I barely remember what it all was that I wanted to say. In fact, this post has been so long in the works that apparently I’ve got another appointment with my LLMD next week. That works out wonderfully since I’ve forgotten my last one! (Surprise, surprise.)

I do remember that last month I walked into the office in the midst of my abdominal troubles. Near constant pain, swelling, and complete loss of appetite. My doctor had me get an ultrasound for a suspected enlarged spleen. That ultrasound came back within normal limits. But I was still left with the pain, not to mention the swelling. There really wasn’t much we could do. I wrote about this extensively here.

I also had a blood draw that day to check on my liver panel. Being on the Mepron was worrying with the toxicity, and now those new symptoms. Last week I came home from the Senate hearing and found a message from my LLMD waiting for me. My liver panel numbers were significantly higher than my December results had been. At my January appointment we had decided to wait and see what another month on the Mepron would produce. My Babesia symptoms had flared, and not broken yet.

Instead, with these new liver panel numbers I was instructed to stop the Mepron until we could discuss the situation with my doctor in depth. So, I was on the yellow stuff one morning, and off that night. Just like that!

I think it shocked my system, frankly. Last week was one long herx. I barely made my school deadlines, and by the end of the week I had a migraine like I hadn’t had in months. I can only describe it as a headache so intense that it reminded me of the ICP episode of last year. I had a constant low-grade temperature, and an increase in brain fog.

But by Sunday morning I was feeling well enough to follow-through with my plans to volunteer at my old elementary school’s Mardi Gras, and then spend the afternoon with friends. It was a joy! And, I couldn’t believe my luck when I felt well enough the next day to spend another afternoon with friends! Things were looking up. The herx had lifted. Lifted, that is, all except for one symptom. I’ve still got the headache I got the day after I stopped the Mepron. It’s no longer a migraine, but it’s a headache. And it isn’t letting up.

As far as I can tell I’m still showing symptoms of Babesia. But, I’m waiting to hear my LLMD’s opinion next week.

I feel differently since stopping the Mepron, however. I don’t know how to describe it. A word isn’t coming to mind. I think my energy levels are a little higher, and my stomach has felt better since last week. My concentration level and cognitive functions are fleeting though.

Yesterday I couldn’t settle down to work on homework. Something just wouldn’t let me concentrate on what was in front of me. Instead I found myself making bread. Gluten-free bread. From scratch! I don’t even remember starting – I just recall being in the thick of measuring flours and smelling yeast. I made a big pot of quick lentil soup for dinner (I’ve been craving lentils like crazy!), and threw together a chocolate pudding to set overnight. I was a madwoman in the kitchen and I could barely stand by 7 o’clock.

I do feel that I’m not getting enough probiotics in my routine. And, adding more can only help my abdominal issues. I do take a supplemental probiotic, but I want to be adding additional foods to that. So – deep breath – starting this week I’m going to begin brewing kombucha (fermented tea) and give that a shot. I’m also very interested in water kefir as a dairy-free kefir option.

I had the opportunity to spend the afternoon today at the MN hearing for the house version of the Lyme protection bill, HF 2597. No vote yet. The bill was tabled.

More soon. I feel sleep coming, and not a moment too soon.

Peace and healing, molly

 

“So what do we do? Anything. Something. So long as we just don’t sit there. If we screw it up, start over. Try something else. If we wait until we’ve satisfied all the uncertainties, it may be too late.” – Lee Iacocca

Just a quick post before I fall up into my bed. {I say “up into” because I have a loft bed, and try as I have, it’s impossible to just fall into it. Frustrating, yes, but I deal because I love it.} I almost forgot over the weekend, but I have an appointment with my LLMD bright and early tomorrow morning. You’re all in-the-loop again. How’s it feel? I’m enjoying it! 

I just finished writing up my most recent symptoms, and questions to talk about tomorrow. I think we’ll be discussing my co-infection panel results this time. We only had the preliminary results last month, and my LLMD wanted to refer with another doctor in-state about my results.

I’m a little frustrated because I’m seeing a pattern in my symptoms and some of those that I thought were gone for good, seem to be back. I’ve had 3 migraines in the past month. Those have been gone for months! We thought that they were being caused by the gluten in my diet because almost as soon as I went gluten-free they began to decrease. Why are they back?

And, true to my yearly patterns my winter air hunger is back with a vengeance. Yuck. My pulse has been so fast that some nights it’s hard to fall asleep. And my hands are so sore that I can barely write a lesson’s worth of math notes. My teachers are so understanding, but you try explaining brain fog to them. It’s hard! Especially when you’re experiencing said brain fog at the time!

Of course, this pain and soreness can be partially blamed on the weather. Did you know, that it has SNOWED here in Minneapolis? Yes. Inches of snow on October 12th. I don’t remember it being this cold and white this early! {But then, I try not to rely on my memory…} This feels truly bizarre. I love snow as much as anyone, but what happened to fall? Just wondering, since last week I announced that it was “officially here”.

 

Wish me luck tomorrow!

Peace and healing, molly

 

“Kindness is like snow – it beautifies everything it covers”

Hey everyone! It has been so long since I felt able to write, it’s good to be finally back to normal. I’ve missed this nightly ritual in the past weeks. And, let me just thank all those that continued to check up on me while I was “missing in action”! As I’m sure most of you know, or have presumed, I had a pretty nasty and scary herx reaction that lasted 3 weeks. I’m much better now, and have been steadily improving for a week.

 

It was horrible though. I had heard and read about other’s herxs but until you’ve had a bad (*read that as mind numbingly awful and unbelievably painful) one yourself, it’s truly hard to appreciate the meaning of the words. But, I survived. Granted, it took a month’s supply of migraine meds, equal amounts of pain killers, a trip to the ER, several visits to my chiropractor, as well as a new (lesser) dosage of antibiotics and a heck of a lot of detoxing. But I did it! Thanks to my amazing parents who were there for me the entire time. I couldn’t have done it without them.

 

My latest road bump as been double vision. It’s been, oh almost 3 weeks now (do I sense a pattern??) I think. It started during the herx and we just assumed it was part of the migraine. But that didn’t make sense when the migraine finally settled down and I was still seeing people with 2 heads and walking into walls. Thinking it over it actually started beforehand with blurry vision, that gradually became double. It’s been tough, especially with my already-present vestibular disorder that causes dizziness. Let’s hope this doesn’t last too much longer… But seriously I have been improving. This week I’ve been able to keep the eye patch-wearing to a minimal amount and have discovered what triggers it so I’m better able to stave it off. I’ve got an appointment with my LLMD (Lyme Literate Medical Doctor) this week, so we’ll see what she has to say about it. Nice photo though huh? I’m thinking the black is a little boring…. I’ll see what I can do about decorating it :) It needs something…. thoughts anyone? I’m thinking of painting one of those dizzying spirals on it so that everyone who looks at me gets just a wee bit dizzy… fun, no?!

 

In other news, I’ve been dizzy and unbalanced (did I say that?) enough to break out a cane. We didn’t have one that fit me anymore so I borrowed my brother’s extra one. It’s nice to have, but I hate using it. I always did. For one thing, it’s beyond me on how you walk with them. I mean, really, it’s harder than it looks! I’m also beginning to get more and more into the book Cure Unknown. My LLMD suggested I read it as soon as my diagnosis was confirmed, but I just haven’t been too excited about it until now. I’ve heard enough about it though to keep me reading, little pieces at a time. It’s finally all clicking in and making sense. It’s actually a pretty good book; I’m glad we bought it. It’s a good reference. As soon as I’m done with it it’ll be my mom’s turn.

 

More good news, it’s my spring break this week! I’ve got a million things to do and only a few days to do them in. We’ll see how that works out. It will give me the time to get back my blog however!

 

Peace, molly

 

“Through humor, you can soften some of the worst blows that life delivers. And once you find laughter, no matter how painful your situation might be, you can survive it.” – Bill Cosby

Hello all! Well, this is just a quick little update for you all, because as some of you have noticed, I’ve been missing for the past few weeks. I started a new antibiotic 2 weeks ago which about 12 days ago caused a major herx reaction. It’s been a miserable, and very long 2 weeks. It was the worst migraine I’ve ever had, and I’m still working on detoxing to get rid of it. I’ll explain in a few days, but I just wanted to give you all a little heads up as to what’s been going on.

 

Thanks for checking up on me!

Peace, molly

I don’t know where the days went. It was Tuesday, and the next thing I know it’s Friday night and I’m exhausted. Well, that seems to point towards me having at least an exiting week. Which I did, I can verify that for ya. =)

 

But anyhow, lets see what did I do? There was a Girl Scout leader meeting that Em and I went to on Monday night. We publicized our camp a bit, so that was fun. And chatted, of course. There’s always more planning to be done. Let’s see what else…. Oh, ok I had a chiropractor appointment mid-week or so. That helped my migrates so much. Suddenly I could move my back freely and breath easier too. I’m just amazed every time I go back. My headaches are much improved from this time last week. I’m, needless to say, happy about that. Then I had a few days of internet-inactivity/mind-numbing frustration. It’s up and running now… but it and I haven’t found a mutual appreciation yet. We’re working on it…

 

Then Tara had a dress-fitting for the wedding. That was so fun! A little crazy and stressful perhaps, but it was nice. Tara brought over the dress she ended up buying this afternoon though. It’s so beautiful!! I can’t wait to see it on her. It’s absolutely perfect for her, a mix of everything she wanted. And, it’s vintage! She’s thrilled, it was so fun seeing her face as she showed it to me. I got to try out my bridesmaid dress too, which I love! It’ll be green and it’s so cute. I’m happy with it. Both Chris and Tara thought I’d like it. They were right!

 

And tonight, my goodness was there excitement. I was able to hang out with Dan and Gracia at the mall for a few hours. To be perfectly honest, I was just relieved to be out of my house! But, it’s been over a month since I saw Gracia last. And that’s a long time not to see your best friend! So it was awesome to see them, I was so excited I barely got any work done today (but shhhh….). Ahhh, normality is truly bliss.

 

I think overall, it was a great week but it was a rough one. The rain had me nearly couch-ridden for a few days there. Something about the change in humidity I think, it always makes me hurt so much more. I’ve been much dizzier, and nauseous this week. I’m started taking my anti-nausea meds every day. I’m just dragging, and moving slower than I’d like. I keep noticing how tired I am. I’ve also discovered that blurry vision is my newest herx symptom. That explains why I was having such a problem finding the correct contact prescription! It felt like my eyes kept changing, and turns out they probably were. Greaaat. And the blurriness is just making me more dizzy, which makes me more nauseous. It’s just a cycle that I can’t seem to catch the end of.

Here’s hoping for a restful weekend!

 

Peace, molly

 

“Sometimes in our confusion, we see not the world as it is, but the world though eyes blurred by the mind.” ~ Unknown

Ok, so much has happened in the past few days that it almost seems daunting to be sitting here trying to summarize it all for you. It’s been a complete mix of both amazing and inspiring events, to recoveries, excitements, and the inevitable repercussions that follow.The good days and the bad ones, the ups and the downs, I know they come with the territory. But every so often they just hit ya right in the face. And not always in a bad way, but often in a good one. I’m a realistic person, and feeling the ground under my feet is an emotion I’m willing to accept today.

 

It all began on Thursday. I did make it in to see my chiropractor, and yes thank God I seem to have recovered from my migraine! He made a few adjustments and almost instantaneously I could feel the pain just begin to melt away. I love that feeling. It’s like all of a sudden you can hear yourself think again. The dark overcast sky has moved on, and away, and you’re there just waiting for the sun to shine again. Is that a bit melodramatic? Oh well, if it gets the imaging across I’m happy. He agrees that I need some more work done though, so I’ll be seeing him again in a few weeks.

 

Friday morning my dad and I went in to see my doctor, just to check in on my progress so far and have a precautionary EKG done. The appointment went well. I listed off my seemingly odd symptoms and experiences so far and she just nodded and took notes. Apparently, I’m normal! Who knew?! Well, ok, I’ll rephrase that. I’m normal in the Lyme world.

 

My body sweats and chills, increased nausea, dizziness, fatigue, and I can’t even remember what else right now, are all normal reactions for me to be experiencing if I am indeed having a Herx. Need some refreshing on what that is exactly? Well a Herxheimer reaction, or Herx for short, occurs when the body (my body!) is experiencing the overwhelming effect of the toxins from the Lyme Disease as they’re being released from being killed off by the antibiotics. The body can’t get rid of them fast enough, and therefore both new and old symptoms begin to crop up again. Having a Herx is considered a confirmation of the Lyme Disease in my case. So yes folks, I’ve officially got Chronic Lyme Disease. Honestly, I’m happy that it’s confirmed. Now we can move forward with more treatments and try to fight this thing!

 

My doctor gave me a a list of herbs and supplements to look into taking. I’ll be starting Probiotics soon to give my body some help with good bacteria. The antibiotics are killing most of it right now, so it’s best to supplement. I’m still learning more about this, so there’ll more to come I’m sure. I’m also really intrigued by her request of me to begin taking grapefruit seed extract. There’s new research to show it’s usage in killing the “cyst” form of the disease, which antibiotics are unable to do. Exciting, huh? I’m amazed at the use of these natural sources for fighting the disease. Another supplement we’re looking into is Cordyceps mushroom which helps boost the immune system and also fights Lyme. I sense a trip to the Co-Op soon to look for these! Ah, and just a side-note… my EKG was just fine, so no worries there guys.

 

I spent the rest of Friday afternoon working on school work and cleaning my room. It’s taken me months to find the energy to do that, and I’m so glad I pushed myself to do it. I’m so enjoying being able to chill out on my couch again. I missed that. And, Friday night my best friend was able to sleep over! We were up until at least 1 watching chick flicks. The perfect end to a busy and crazy day I’d say!

 

Saturday morning we woke up bright and early (I don’t even want to think about how many hours of sleep I got..) to walk at the Juvenile Walk for Diabetes at the Mall of America. We walked to support a fellow Girl Scout from our service unit. And, let me just say that it was completely and totally worth it. It was truly amazing! The amount of people there was phenomenal, and the spirit and energy there was just so inspiring! I’ll post some photos later :)

 

So after all that excitement and walking, I crashed for the rest of the day yesterday. I was just so tired. I was dizzy, and tired, and nauseous but I didn’t regret it. And, I still don’t today. Sure, today was a long day, but like I said earlier… the ups and the downs come with the territory. I’m just proud that I pushed through and enjoyed myself so much over the long weekend. Today after teaching Preschool at my church I collapsed again (luckily, I can get to my couch now so that’s not as much of a problem anymore). My mom says she can “see it in my eyes” that I’m sick. And, I think I’d agree. I’m starting to feel the Herx more and more. Today I was feverish instead of chilled. My head aches, my legs and feet are painful to the touch, and I’m avoiding closing my eyes because I’m somewhat dizzier than normal and I don’t want to admit it. I had a great evening visiting with my brother and sister-in-law, and a morning to make me smile with my Preschool class. So it wasn’t a bad day altogether, but oh man parts of it were. I think though, that one of the benefits of having symptoms of “brain fog” and memory loss, is that I’ll probably just forget that this afternoon was horrible and only remember the good parts of the rest of the day. At least, I can only hope.

 

Peace, molly

 

“We have normality. I repeat, we have normality. Anything you still can’t cope with is therefore your own problem.” ~ Douglas Adams

Well, it’s been a while since I wrote any “status-updates” hasn’t it? *sigh* Can you tell I love writing about that? But, that’s why I made this blog… so I suppose it’s time to address that for the week.

 

Here goes nothin’

 

Okay, so I’ve now graduated into 3 weeks of Lyme Disease treatments. Yay me!! That was yesterday I believe, or Monday night, one of the two. But, no matter, close enough cuts it for me!

 

Yesterday was also an important day in this whole progress because it was the first day I began taking my 2nd antibiotic. That was fun… I’m just thanking the heaven’s above that I actually remembered to add the new med into my pills the night before! I (feeling oh so very smart, I might add…) added the date and med into my amazing computer calendar, meaning that my computer scared me on the morning of by popping up with a reminder to take it. So, yes, I was feeling a bit smug, if a bit sheepish at jumping because of a pop-up. But, I’m a jumpy person so that’s not my own fault. Oh jeez, I’m digressing.

 

Back on topic!

 

Where was I? Oh yes, my 2nd antibiotic. Well, no bad reactions from it yet. Which is definitely a good thing! My doctor was a little worried about my heart rate after I began taking it, so lucky me, having a dad who used to be an EMT I’ve been under surveillance. So far so good. A normal, steady pulse. Which, is a little odd in itself. Normally my pulse is super fast, and my doctors are considering it a symptom of the Lyme.

 

So I have an appointment bright and early Friday morning to have an EKG done just in case. Very precautionary. I’ll have been on the med for three days beforehand. I’ve never had an EKG before. Do I sense a new adventure?!

 

And, before I get any questioning comments from my parents… no I am not always that enthusiastic. It’s actually been a really long week so far. And, it’s only Wednesday! Uh oh…. I’ve been so extremely fatigued I hardly want to admit it. The pain hasn’t been too bad, minimal I’d say. But it’s there. As is the dizziness which has actually increased a lot in the past week. Last night it was so bad that I didn’t feel like I could turn my head. Ack! 

 

I’ve also had a migraine on and off for the past week. It’s the 1st one in almost two months though! I’m so thrilled at that!! I used to have them weekly. I started seeing a chiropractor in the middle of last year and I still can’t believe the results I’ve been getting. So, needless to say I’m very excited to have an appointment tomorrow morning. Cross your fingers we can get rid of this one too!

 

Other symptoms that have cropped up include me breaking out into cold sweats still. That’s really not fun. I’ve also been pretty shaky all week. And, of course the nausea has been pretty bad. I think that’s being caused by the antibiotics. But, I always get more nauseous when my dizziness increases so who knows. 

 

I think that’s just about it. Otherwise, my new school semester started today. New classes included! I’ve got a new art course, economics, and chemistry now. I’ve also been working on a Girl Scout Leadership camp that my best friend and I were asked to plan/host. So that’s been fun. We’re still in the brain-storming phase though so we’ve got lots more work to do coming up here.

 

So there’s my update! Not the best news, but not too bad either I’d like to think. I’m not sure if I’ve gone into a Herx reaction or not yet, but we’ll see what my doctor has to say on Friday.

 

More later,

 

Peace, molly

 

“Don’t panic!” ~Douglas Adams

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