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Health Update August 2019

10 Sep

Hello again friends. Thanks for stopping by SGL for this month’s health update. Fighting Lyme Disease is definitely the hardest thing I’ve done – and that will probably always be true. This journey to health is so up and down that it’s easy to get disheartened. Thankfully, I’ve been coming out of  the crash I was in and have been able to enjoy the last bit of summer. As well as start preparing for a new addition to our little family come the beginning of October.

 

fightinglymemigraines

 

Overall Health: There’s improvement in the wind, folks. I stopped taking the atovaquile/Malarone and my fatigue diminished greatly.

8-5 tired all day and dealt with keeping migraine down BUT,  was up and about a lot. Had odd energy, pretty clear brain too
8-6 crushing fatigue late am on. Some fibro in feet and calves. 
RELATED to: eating corn? Overdoing it yesterday? 
8-7 better,  about halfway between the 5th and 6th. Still fatigued but up and about.  
8-8 low energy and so fatigued again 
8-17 Started cordyceps 1/day am. Decent energy,  tho tired in am, fatigue hit afternoon but didn’t nap! Fell asleep at 9pm. 
8-20 increased cordyceps 2/day. Fatigue still very strong. 
8-23 drove  to bend.  Seized back had eased enough from Wednesday eve.  Felt pretty well all day,  took short nap late afternoon. 
8-24 – stomach upset off and on all day. Decent energy. Some fibro flaring in my feet.  
Since stopping  the Malarone on the 22nd, fatigue has eased considerably. Rash on face is still present, flares every 4 to 5 days probably.  (Strange)

Migraine:  One near-nuclear migraine with several that were really hard to get the pain level down. But, I really am surprised at how these have minimized. Now, before you get too excited, I do still have pain every day. But there’s been more days that I didn’t take any Clonidine til evening. I am chalking this improvement up to the 4.5 mg of the LDNs that I take every evening. (Low Dose Naltrexone).

Sleep:  I’m getting more like 8 to 9 hours each night, with the normal 2 or 3 wakings. I am also putting this to the LDN’s. I haven’t been needing naps daily either, which is so very nice.

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Memory/Brain Fog:  This has improved a little bit more – I’m noticing I’m able to recall words/names easier. But when the brain fog hits – man, it hits. *same as last month

Vision: The scintillating scotomas have eased since I stopped the Malarone. I did start to lose my vision once this past month.

TMJ:  It’s been hurting a bit more but I still am blaming that on the fact that when I nap, I don’t put in my night guard. It has been quite tense this past week though.

Fatigue:  As I said, this has decreased even more. I am able to push myself more than I have in years, probably. But, of course, I do have days where I just am relegated to the couch because I am so fatigued. Or that I just need to space out what I plan, to give my body the rest it needs.

Fibromyalgia:  Thankfully, this has eased as well! I only get the nerve pain in my feet when I’ve been walking a lot (or have sugar). My calf has calmed down SO much. My back has seized up twice this month but I think that’s because of my weight.

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Weight Loss: Nope. But, I’m trying to get out and walk more and do mini workouts when I feel well enough to.

Mood: I’m very pleased to report that this has mellowed out again and I’m certain it’s because I started back up on Xiao Chai Hu Tang. Remind me to stay on these chinese herbs. It’s worth it.  *I’m leaving this up because I’ve increased this to 2 tsps a day and it’s so worth it.

Digestion:   This has been a little more touchy lately. Out of the blue my stomach will get really upset. I have some ideas of what maybe I’m not digesting well but…

 

Now, if you’re interested in what prompted me to stop taking the Malarone after a month of taking it, I’ll tell you. My doctor really wanted me to stay on it but a few days before heading to visit my parents, I was thinking about it and the 3 hour drive and all, and I realized that I just couldn’t do one. more. day. of taking the pills that were making me feel like I was going to fall asleep at any moment. Or that were causing major brain fog, increased scintillating scotomas and increased fibropain. I debated about it, researched it, but decided that I know my body best, and that I was just at the end of what I could stand. Within just 12 hours of stopping, I could tell a difference. And then, just days after, there was even more of a change. I’m so glad I remembered to be my own advocate.

 

~Laura

How are you feeling lately?

Health Update July 2019

3 Aug

It’s funny how the hardest part of writing these updates is this introduction. I rarely know just what I want to say right off, so I end up staring at the page, wishing I could just write something, because the rest of the post is done and then I can finish it off! Alas, intros are hard. Apparently. Maybe not for you though.

Anyhow, I’ve gotten this one written up at last.

fightinglymemigraines

 

 

Overall Health: I think I can say that, yet again, I’m doing better. Fatigue, while less than it was, is still a major struggle. My fibromyalgia has kicked up in my back and calves/feet again.

7/22- increased LDN to 2.5mg a day.
7/24- started atovaquile, taking at breakfast – before 9am. Felt decent all day,  worked in yard am.  Tired in evening but no big crash
7/25- fatigue all day long. Felt good aside from it. Couldn’t nap.  Migraine tried to flare mid aft. 
7/26- felt well,  cleaned in am.  Fatigue hit around 11am. Related to new pills? 
7/29 increased  LDN to 3 mg. Slept better,  fuzzy brain early am next morning
7/30 – felt good in am,  cleaned house and worked out. Tired in aft but not overwhelming.  Napped after dinner.  Migraine kicked up to a 7? Back/left calf hurt evening and all night. 

7/31 – ran errands in morning, felt ‘off’ and was sensitive to smells while out.  vision loss and nuclear migraine early afternoon, slept/cried/iced for about 4 hours, felt decent enough to get up and make dinner.

8/1 – fragile and dealing with aftermath of nuclear migraine. trying to keep the migraine from flaring again

Migraine:  Only one nuclear migraine (and that was the 31st!)  Mostly, the pain level gets to an 8. And hovers. I’ve had a bit of the odd visual auras (which I found out at my last dr appt that it’s called scintillating scotoma) but not near as much as last month.

Sleep:  I’m still getting 6 to 7 hours a night, with at least 3 wakings. Majority of them I need the ice pack on the pillow.  But there was about a week where I barely needed the ice pack. *yes, this is the exact same as last month!*

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Memory/Brain Fog:  This has improved a little bit more – I’m noticing I’m able to recall words/names easier. But when the brain fog hits – man, it hits.

Vision: The auras have eased.  I just talked about this in the migraine section – go check out that article, it’s about these colors/blur/black spots. Well worth the read.

TMJ:  I’m happy to report that my teeth don’t ache very often anymore. I’ve still been taking naps without my night guard (shame on me, I know) and that is when my jaw is most tense but… well, I figure that’s my fault. It only pops a few times a week now.

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Fatigue: This has decreased a bit, it still hits me and when I take naps they can be a few hours long, but I’m not taking them every day. And I’m not falling asleep directly after dinner either –well, mostly. Overall, I’m able to do more, I just have to space things out and be aware that I need rest times in between.

Fibromyalgia:  As I said above, my back is hurting again. And, I still have my calf aching/cramping/burning pain fairly regularly and my feet do these ‘great’ little nerve freaking out sessions.

Weight Loss: Minimal, but I’m determined to focus on this again!

Mood: I’m very pleased to report that this has mellowed out again and I’m certain it’s because I started back up on Xiao Chai Hu Tang. Remind me to stay on these chinese herbs. It’s worth it. – this reminder is still real guys.

Digestion:   This is still, thankfully, at my normal.

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As my notes said, I started taking atovaquile just over a week ago. I haven’t noticed any negative or positive side effects from it yet, so I’m waiting to hear back from my doctor. She has me on it for 30 days, just to see if we can kill off some of these buggers. (no, I’m not very technical, sorry.)

I’m still taking NP Thyroid every morning. As well as LDN every evening. Each week I’m increasing that dosage until I hit 4.5 mg.

Since I can’t remember the last time I updated my full list of supplements/vitamins, I’ll share them with you today:

Andrographis

B2

Bearberry (I’m finishing up the bottle I have and then stopping)

Butterbur

Berberine

Calcium

Chaste Tree/Vitex

Complete Mineral Complex

Feverfew

Fibronol

H2PLX

Horse Chestnut

MG

St. John’s Wort

Turmeric

COQ10

Iberogast

Xiao Chai Hu Tang

Liver

And that’s it folks, if you’ve got any questions, I’ll do my best to answer them. I did want to share the post that I wrote about the scintillating scotoma (before I knew what they were called).

Thanks for stopping by SGL today,

Laura

 

The Darkness in my Vision

9 Jul

On the edges of my vision there’s a shimmer.

A flash of color.

A vagueness.

A hint of the darkness to come.

I’ve learned that if I keep my eyes forward, it is somehow light enough to ignore. But if I look around, it roars out at me as a lion upon its prey. The strength of its presence causes my whole body to react. My head starts a low pounding, my stomach clenches and my knees feel weak. If left at it’s height, it will take over every part of me, leaving me writhing in pain and fear.

drknsssinmyvsion

Photo by Sebastian Muller on Unsplash

So I take the easy path. I fix my eyes straight ahead and breathe deeply. I push it back down. And try not to imagine the colors – the rainbow of them arching out from the center that is a blinding white. I try not to think of the blurriness that makes everything around that color, ‘other’. Something other than what it is. Something that no longer makes sense, as if it’s from another time or place. Something that leaves it’s edges behind with every blink of my eyes.

As my breathing deepens and the shimmer lessens, I forget about the urgency of doing more to avoid it returning and blithely go about my day.  The lion has been tamed and the prey has been rescued.

For the moment, at least.

Once again, another head turn, a glance too fast for my eyes to adjust and there it is again. But this time, the shimmer is brighter. Bigger. And somehow, darker. The colors have turned deeper shades of themselves, the blinding white has taken on a ferocious tint. As my head pounds again and my joints turn to mush, I remember with clarity that this has happened already today.  My hands will shake if I let them, from the fear that is dogging me now, but I harden my will and do what I have to do to avoid the nightmare that just might come anyway.

The darkness is like the lion in the show – the audience blissfully believes it to be tamed and so will draw nearer it than they should. But the trainer knows that it’s only biding its time until it can strike when the trainer has turned his back and let down his guard.

The darkness is coming.

~This is a description of the visual auras that I’ve been getting off and on the past 14 years. The nightmare that comes after this, is a complete loss of vision in my left eye for about half an hour and then such a vicious migriane (I’ve taken to calling them nuclear migraines) that I’m left crying, laying with an ice pack on my face and if I do have to move, I end up crying even more. These are the ones that make me wonder if I will live through it; they make me wonder if there will ever even be an end to the pain. So there’s good reason to avoid these as much as possible. Of course, sometimes, no matter what you do, they come anyway. 

~Laura

Health Update June 2019

28 Jun

When I go to write these health updates, the very first thing I do is pull out my phone and go to my notes. Where I’ve faithfully – or not- kept a log of how I’ve been feeling. Then I’ll email that log to myself and copy and paste it below my Overall Health section… (the wonders of technology that makes that so simple). Well. When I just searched for it, apparently I didn’t put down one day in my log for this month. Not even one day! So, I’m having to rely completely on my memory for this post. Which should be interesting…

fightinglymemigraines

 

Overall Health: I hesitantly say that I’m doing better than I was at last month’s update. Overwhelming fatigue and visual auras still command much of my attention though.

Migraine:  Thankfully, I haven’t had  more than one turn into a nuclear migraine but there have been several that have wanted to. Mostly, the pain level gets to an 8. And hovers. There have been several days that I didn’t need a clonidine until later in the afternoon, and others where I was taking one right after getting up (and all through the day) and yet nothing would touch the pain.

Sleep:  I’m hitting 6 to 7 hours a night, with at least 3 wakings. Majority of them I need the ice pack on the pillow.  But there was about a week where I barely needed the ice pack.

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Memory/Brain Fog:  This has improved a little I think.

Vision: The auras just don’t want to go away this month. Most days I have a vague sense that my vision is off somehow and others, I get the more intense colors/blur/black spots. Thankfully so far this month, I haven’t lost sight in my left eye at all.

TMJ:  This is about the same as last month although since I’ve been randomly falling asleep during the day (this means without my night guard), my jaw is tenser and my teeth ache a little more. Other than carrying my night guard around with me, I’m not sure how to help this.

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Fatigue: I can’t even tell you how much this has decreased you guys. Partly because it would be hard to describe that change and yet get across how much it is still affecting me -and like I’ve mentioned above, I’m taking almost daily naps. Most of them are right after dinner (picture me dragging myself from table to couch without cleaning up from the meal type of tired).

Fibromyalgia:  Even with cheating last week, this hasn’t been near too terrible. I still have my left side (especially my calf) aching/cramping/burning pain fairly regularly but the intensity has eased.

Weight Loss: Minimal

Mood: I’m very pleased to report that this has mellowed out again and I’m certain it’s because I started back up on Xiao Chai Hu Tang. Remind me to stay on these chinese herbs. It’s worth it.

Digestion:  We’re staying at my normal! Which, is clearly not what it should be but I’m okay with it for now.

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SO. I’d like to state the reason for my improvements for this month.

We took me off the doxycycline. The day before I went in to my doctor, it hit me that I’d been feeling awful for 6 weeks. And I’d been on the doxy for….6 weeks. My body just couldn’t handle it. You know what else has disappeared? The rash all over my face.

I am still taking the NP Thyroid and believe that it’s helping my fatigue.

It’s been a slow battle coming back from being on that antibiotic and I’m thankful that I’m getting back to how I felt before. Of course, it’s frustrating that I fell that far downhill but I’m glad I tried it because now we know. 

As of the 24th, I started LDN’s (low dose naltrexone)- we’re targeting my migraines with this. I’ve been told that they are tolerated very well. We’ve started me out at 0.5mg and are going to slowly increase the dose til I reach 4.5mg (which is the standard dosage). I had to really force myself to do this – after such a strong reaction to the antibiotics, I really just wanted to curl up and lick my wounds. But I knew that that wasn’t the right decision. I can’t waste any more time that I could potentially be getting well, just to get over fear. Sometimes, that’s the right choice. But this time, I knew I had to push myself and just try it.

Because I can’t even imagine life without migraines. I’ve been having them since I was…18 or 19. To go through a day, two days, a week! without one… Ahhh, what a thought. And if we can get these to go away/ or just minimize them, we believe that some of my other pains will ease as well.

So here’s to being bold and trying new things in the slow journey to health.

~Laura

 

 

Health Update Apr/May 2019

30 May

All I can say is at least I’m getting this up before June starts. My levels, and types, of pain have made getting this post up such a bear. fightinglymemigraines

 

 

Overall Health:  It’s been a roller-coaster ride these past six weeks. That’s really all I can think to say about it. I went from doing pretty well during the days and crashing so-so in the evenings to….rough days and passing out at 8pm because I just can’t stay awake any longer. (only to wake up an hour later and not be able to sleep again til midnight.)

 

Apr 16 started doxycycline                                                                                                              Apr 30- good energy most of the day.  1 mile walk plus housework. Migraine kicked up afternoon,  clonidine calmed.  Started thyroid 9am. Tiny bumps on face in evening, not sure why? 
May 2- decent energy in am,  hit with fatigue around noon.  IV in afternoon.  
May 3- felt pretty well today,  fatigue hit afternoon. Tiny bumps on face again this evening and a tad bit last night. 
May 5- bumps again today, also around collarbone, some itchy. Fatigue early afternoon, napped but then foggy and dehydrated rest of afternoon.  Hungry like crazy in evening,  migraine kicked up a lot.  
Observations: fibropain is less intense.  Migraines are still sharp and increase a lot in evenings.  Clonidine helps,  overall but not always.  Evening hunger is common.  Fatigue is light in am but hits mid afternoon at least.  Needing a nap most days.  Foggy brain after. 
Went off of thyroid on may 11th to see if it was causing the rash on my face. Fatigue hit hard whole of following week, rash still present although not as bad? Fibromyalgia flared the same week.  Started thyroid back up on the 17th.
May 17 – visual  aura and nuclear migraine. 
May 21 Fatigue has eased a little bit since Sunday.  Felt off all day,  fending off another crash this evening

Migraine:  SIGH. The pain has been quite terrible lately, with one full blown visual aura/nuclear migraine this past Friday and three more attempting to blow up.

Sleep:  I’m hitting 6 to 7 hours a night, with at least 2 wakings. Majority of them I need the ice pack on the pillow. Several I’m having night sweats -even with the ice, joy oh joy – and of course, never waken feeling refreshed.

Memory/Brain Fog:  Brain fog has stayed around again. It’s kept my ability to focus on things at a minimum.

 

Vision: I have had four  FIVE visual auras in the past week. That’s about four more than I’ve  been having every few months. I’ve noticed that even in between lately, my eyes aren’t quite right. Looking at black text/white background can be difficult…

TMJ:  I have just realized this has eased. My teeth aren’t hurting as much or often as they used to. It has only popped a few times in the past few weeks. My jaw still regularly hurts but overall, this has definitely improved.

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Fatigue: This is still my biggest current struggle. It can go from just marginally dragging to laying me out and making me fall asleep within half an hour. (this makes for interesting planning of errands…)

Fibromyalgia:  In a way this has decreased slightly. But my left side (top of head down to toes) frequently aches. If I stay away from processed sugar, the fibro stays down –remind me of this next time I’m tempted to cheat and have sugar.

Weight Loss: Non-existent.

Mood: This has been a bit topsy-turvy the last little bit but I’m sure it’s because of the levels of pain I’ve been dealing with. And hormones – hormones out of whack are fun. Eesh.

Digestion:  We’re back to my normal! woohoo!

Like I said in my notes above, I went off the Thyroid for several days to see if the mostly invisible rash that has appeared on my face was connected to it. I’m fairly confident now that it’s not, but the rash is still there (at least it is mostly impossible to see!) and I’m not sure why. I’ve also been trying to tell if the doxycycline has helped any of my symptoms, but really, with how I’ve been feeling, it’s so hard to separate the pain, you know? Even doing this update, it’s still all so foggy to be able to tell. I’ve also only been on the doxy for a month and a half, so I doubt that’s long enough to be able to tell anyway.

I will add about the Thyroid though, that I think the fatigue was going down after I first started it – so I’m hoping that will start happening again soon. I mean, I was taking Abby on a mile walk in the mornings, doing some house cleaning and making yummy dinners. Which, for me, is a pretty full/energy burning day. And now I’m barely getting her to the park, doing maybe 20 min of light cleaning and sort of maybe throwing a semblance of dinner together. Augh. I know this journey of healing is an up and down, switchback type of road but I’m ready to be through this particular rough stretch. Especially since I know that the pain in my left side would disappear if I was able to lose some weight.

~Laura

Mar/Apr Health Update

19 Apr

Well, this has been waiting for me to finish it for about a week now. My ability to focus has been really quite terrible lately, you guys. It’s a subtle thing though. Since I’m completely in control of my schedule, I can flit around to different things without realizing just how quickly I move on to something new… But, to move on to more exciting news, I’m doing some better! Read on!

fightinglymemigraines

 

Overall Health:  I would say that while I’ve had some low lows, I’ve done pretty well this past month-odd. Daily, noticeable pain and fatigue but not everyday has been debilitating. I keep seeing more glimpses of ‘me’ in the mirror – you know, when I’m not asleep or laying on an ice pack.

Migraine:  Only one visual aura and nuclear migraine this time around (and that while on vacation of course). I attempted going off clonidine for a few days but that didn’t work as well as I thought it would. I’m still trying to get the edge off the pain.

Sleep:  I’m getting about 8 hours with 2 or 3 wakings in the night. Most nights I am completely exhausted but have to wait til I can get the pain down to a decent level to go to bed. OR I’ve taken such a long nap during the day that I’m just not tired enough at a reasonable hour. Eesh.

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Feeling like half of myself that morning

Memory/Brain Fog:  Brain fog has stayed around, sadly. It’s kept my ability to focus on things at a minimum.

Vision: I only had one visual aura! The beginning of March I did have a strange… quality to my vision at times but that has since gone away.

TMJ:  It pops only occasionally now but still aches so much that my teeth hurt daily. The front of my neck has started hurting again as well. I really need to get in to my bodywork doctor soon.

Fatigue: sadly, this has stayed strong. Naps are pretty frequent, ranging from twenty minutes to three hours. Eesh. Mostly though, if I space my activities out, I do pretty well. I have gotten back on the liver, daily, and it is definitely helping.

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Fibromyalgia:  It’s decreased slightly. My left calf is still tense/self flexing throughout the day and occasional cramping in my feet. Most of the time I can kind of ignore it, although when it settles into my knees like it likes to do, it’s harder to ignore (like right now)

Weight Loss: Oy. I was losing steadily and slowly and now it’s just to the point where I’m hoping I can start working out again so I don’t end up at the weight I was when I first started losing a year ago. Augh. < this is the same as last month! Oy.

Mood: Well, this has evened out again – without the use of Xiao Chai Hu Tang.

Digestion:  Much improved. I’ve even increased the amount of vitamins/supplements I take and my stomach is still doing fine. I’m so relieved.

Since I wrote the above, I’ve been in to see my main doctor. It was a good appointment, and as she’d been studying Lyme again lately, she was excited about what she’d learned. Due to that, she’s had me start doxycycline and I’ve got to get to Costco to get my prescription of  Armor thyroid to start as well. I don’t believe I’ve ever taken an antibiotic before (?) so any advice that you may have, I would love to hear them. At the top of the notes she printed out for me, she wrote “Laura, you are doing great! Things will go perfect.”  Which is more encouraging than the normal version of ‘we can figure this out’ don’t you think?

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a quick selfie while on vacation

*I’ve been on the doxy for a few days, and without knowing if how I’ve been doing is related to that or not… I need to document it. I started it the 15th of april, and took a detox bath that afternoon – and had a terrible reaction to the bath. I was weak and my heart was pounding and as the day continued, my head got worse and the aching increased. And I was SO hungry in the evening. Eesh. The next day I was better but again, crazy hungry in the evening. The morning of the 18th, a terrrible, horrible, no good cramp in my left calf woke me up. I could feel my right calf cramping up as well. It went on forever (I really have no idea in reality…) before it eased.

I plan on looking up the info she was sharing with me and then I’ll pass it along to you!

~Laura

 

 

Health Update Jan/Feb 2019

8 Mar

Well, it’s a little later than I wanted to get it up, but my health update for January and February is finally here.

fightinglymemigraines

 

 

Overall Health:  Fatigue and fibromyalgia have been hard this past month odd.  Having motivation to get anything more than the bare minimum done has been hard most weeks.

Jan 22- still bad fatigue but went grocery shopping in am. Brain fog in afternoon/evening. Migraine kicked up in late evening but not severe. Some achy fibropain last night and thru today
Jan 25 – less fatigue the past few days and have been able to take short naps. Migraine kicks up in evening. 
Pre-cycle symptoms: fibro flaring in calves, back pain, weird/bad dream
Jan 30- tired first thing but had decent energy thru out the day. Some minor fibro cramps in calves and hands. Left hip hurting in afternoon and evening. Decent day overall
Jan 31- pretty good today till fatigue hit in afternoon. Nap and clonidine kicked the migraine. Left calf cramping
Feb 2- fatigue and migraine upon getting up. Took 2 clonidine in am and took a 2 hr nap. 
Feb 6 – increased iberogast to 2 drops/day. 
— bad fatigue most of weekend and Monday (11th) and even worse on Tuesday (12th). Severe migraine on Sunday (10th). Wondering if the iberogast is why the fatigue is so bad? Or am I going low on h2plx? 🤯
Feb 13- fatigue wasn’t as bad today. Did minor housework, blogged, read. Only took one nap. A bit of a struggle to keep migraine down all day. Did 1 drop iberogast in am and evening each. Testing to see if it helps. Left hip and calf started hurting in evening
Feb 18- changing times of iberogast seems to be helping fatigue. Even with a busy Friday and Saturday, I was still able to take Abby to the park this morning. Migraine/mood flared afternoon. Calmed by evening. Left calf and Hip hurt in evenings. Took half a melatonin
Feb 19- decent in am, a little more myself. Ran to Costco in am. Hit w/ fatigue after but not awful. Migraine flared to 6/7 in afternoon. Ice and tylenol/Bayer helped. Going to bed with ice pack 💤 left calf tight, migraine in temples
Feb 25- some less fatigue but still strong. Migraine kept down with Tylenol/aspirin. Took one nap. Upset stomach afternoon and then again after dinner. Bloated stomach. Also had the sweats when stomach was worst. Foggy brain. 
Feb 27- pain in eyes, felt like auras were coming. Fatigue. took a nap and woke up exhausted. Migraine off and on all day. Did some housework etc today though so, some improvement. No stomach issues!

Migraine: Frequently, Clonidine (my prescription pain killer) doesn’t work and I take 2 Tylenol/1 Bayer instead and that does the trick. Some days, the migraine refuses to ease but others, it chills out readily. Commonly it’s in my left temple, band around the head or base of skull.

Sleep: Surprisingly, I’ve started getting more like 8 hours of sleep a night. (still with a few wakings each night of course). I’m not taking a nap every day, which, while that’s nice, I think most days I should be and just can’t.

Memory/Brain Fog: brain fog has been a definite struggle still. And of course, some words are still escaping me.

Nutrient IV : so this might be an odd category but I want to keep track of what we do, and how I respond to it. We did a drip bag this time with the full spectrum of B vitamins, A bunch of Vitamin C and whatever else she adds to it =) and a push of glutathione at the end. I’d hoped to notice a huge increase in my energy and decrease in symptoms (like I used to) but I didn’t. I noticed a small change in those things at least.

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Vision: I didn’t have one major visual aura! I have had the feelings of the beginnings of them but have been able to catch them (ice pack, eyes closed in a dark room, protein snack). However, I have had just…aching in my eyes the past few weeks. Dryness as well.

TMJ: I’ve been having more painful popping the last week odd, but before that it was pretty non-existent. My teeth/jaw do hurt every day, pretty badly sometimes.

Fatigue: Once again, this has been such a killer. I have increased my dosage of H2PLX to 3/day and that has already helped. (I just did this a few days ago). While I don’t like the price of H2PLX, the results can’t be denied. I’m trying to get more iron in my diet and contemplating going back on the liver because I’m just so worn out from this. It’s a crushing exhaustion that just wears you down all day.

Fibromyalgia:  Sadly, this hasn’t eased since last month. My left calf is still tense/self flexing throughout the day and my knees/elbows hurt to some degree all day/night. My knees hurt the worst though – some days they get ‘stuck’ and I have to slowly straighten them. Ice is still the current magic treatment.

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Weight Loss: I have gained and lost, gained and lost. It’s not been a priority lately but I’m trying to focus on it again. I’m trying to cut out corn, starch and processed sugar.

Digestion:  Somehow, this has eased to an extent. I still get an upset stomach a few times a week. I still need to talk to my doctor about it (as I ended up having to cancel my last scheduled appointment). I’m wondering if the Resveratrol was one of the main culprits to it freaking out so badly.

Mood: Overall, this has stabilized, and I haven’t even started taking the Xiao Chai Hu Tang. (one of my favorite herb combos you guys, look into it! Check the source though, the levels of arsenic can be high).

I just decided to share with you the vitamins/supplements that I’m currently taking, since I’ve had to really pare down and start over on these.

2 each : Feverfew, Magnesium, St. John’s Wort, Fibronol

1 each: Turmeric, Vitex, Andrographis, Berberine, Butterbur, Bearberry

1 Complete Mineral Complex only 3/week

3 H2PLX/day

2 drops/day Iberogast

I am wanting to start next, B2 and Calcium (and so many more after those). I also need to work on increasing the Iberogast.

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~This has been a hard month, to be completely honest. I feel like I’ve hit a valley and pitched a tent there. With my brain fog, I can’t write. With my knee pain I can’t be up and around as much as I want/need to. With the fatigue, I’m so drained that just getting food and taking care of Abby is all I can do most days.  I am trying to focus on the positives – one of those being that the fatigue has eased slightly the past few days – and look ahead to better days.

~Laura

In case you missed it, I wrote about a time recently that I took Excedrin. I used to take it regularly for my migraines (about 10 years ago now) but no longer! It’s just…. well, go check out the post. I also have a series on Encouragement for Living with Chronic Pain. 

That time I took Excedrin

27 Feb

 

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Photo by Hailey Kean on Unsplash

I sit here with tremors running through me. My feet are freezing, but I’m burning up. A migraine is trying to come back and my stomachs roiling, causing nausea. I just want to sleep but there’s no way to relax enough when my body’s freaking out like this.

the cause?

I ran out of prescription pain pills and had to take excedrin tension headache. Caffeine is not my friend. In this moment, I’m not really sure if the pain relief was worth it.

This is my life – deciding which pain I’d rather deal with.

And let me tell you, I hate that fact.

~~~I wrote this a year ago, and never came back to finish it. Perhaps I just needed to get these words out. But I decided to share them with you today in part to remind myself to never ever take Excedrin again.

And to say that if you ever find yourself up in the middle of the night with pain keeping you awake, I know what you’re going through. And if you want to chat about it, or books, or food, or anything, drop me a line. I’d love to talk with you!

Health Update Dec 2018/Jan 2019

23 Jan

I don’t like writing these sometimes – although living the pain is obviously worse. Heh. Over the weeks I’d really slipped into ‘pure survival’ mode. Which for me, means I wasn’t doing any detoxing or anything to help diminish the pain except for my vitamins and clonidine. So, beginning of the new year, I have made it a point to do the extra detoxes and other things to try and get me out of this funk.

 

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Overall Health: I’ve taken some steps backward this past month and that is incredibly frustrating. Stomach issues and debilitating migraines and fibro flaring again.

Dec 20- drove to bend. Very tired after but did pretty well all day
Dec 21- fatigue and some fibro. Short nap in afternoon, fuzzy brain after
Dec 22- decent fatigue, but went shopping. 2 hr nap in afternoon, helped. Some fibro cramps in feet/ constant left calf cramping. Took 1/2 melatonin at night
Dec 24- didn’t sleep well last night. Achy all over – teeth, joints etc. So tired. Some migraine
Dec 27- drive home from bend. Didn’t crash much at all in evening
-Have been having painful twitches for a few weeks. Right eyelid twitching off and on. Fatigue strong but mostly not overwhelming.  
Dec  29- fatigue and some fibropain. Bad foot cramp last evening that took a while to wear off. 
Iron breath has returned, even though stomach feels fine. Didn’t take any pills/drops on Jan 1 to see if that helps like it did last time. 
Jan 2nd – vision loss and nuclear migraine in evening after feeling well all day. Day 25. 
Jan 3- recovery from last night. Fatigue and sore. 
Jan 7 – bad fatigue all day with minimal ability to focus. Migraine and fibropain kicked up bad in evening. BAD. E of C?
Jan 8 –  tired and achy but better so far. Went grocery shopping in am
Jan 17- IV day. Fatigue
Jan 18. – strong fatigue (probably from yesterday) started feeling strange in afternoon, kinda shaky and like I’d had caffeine or sugar. Stomach worse the later it got
Jan 19- stomach still upset. Not hungry in am

Migraine: Two nuclear migraines in the space of a week along with a few almost- nuclear ones. The daily ones have been responding to a combo of tylenol and aspirin better than clonidine lately (so strange).

Sleep:  I’m still getting about 7 hours with 2 or 3 wakings in the night. Most nights I am completely exhausted but have to wait til I can get the pain down to a decent level to go to bed.

Memory/Brain Fog: I’ve been struggling with words a lot lately. Brain fog has been a pretty frequent thing as well.

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Vision: I had two visual auras in the space of one week. Sigh.

TMJ:  It pops painfully frequently and aches so that my teeth hurt daily. The front of my neck has started hurting again as well. I really need to get in to my bodywork doctor soon.

Fatigue: sadly, this has increased once again and stayed strong. I have been resistant to naps lately, just having gotten so very tired of sleeping so long during the day. I’m sure this isn’t a good way to handle fatigue… It’s just been weighing me down every single day.

Fibromyalgia:  It’s increased a bit since last month. My left calf is still tense/self flexing throughout the day and cramping in my feet/calves. I’m glad that they haven’t started again in my hands/elbows though. Ice is still the current magic treatment – be it on my calves or neck. If I’m resting, I’ve got one on me.

Weight Loss: Oy. I was losing steadily and slowly and now it’s just to the point where I’m hoping I can start working out again so i don’t end up at the weight I was when I first started losing a year ago. Augh.

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Mood: I’m sad to report that this has been touch-and-go the last while. I’ve run out of Xiao Chai Hu Tang and haven’t replaced it. (the price is what’s stopping me but I’m going to have to break down and do it soon.)

Digestion: Not good. I have been struggling with iron breath and sometimes an upset stomach again. Cutting back the amount of pills I take has helped but it hasn’t taken care of the problem. I’m really not sure what’s going on – if it’s something I’m eating or what. But I go in to see my Dr. in a few weeks to talk about it.

~Laura

If you want to check out a post about pain keeping you up at night, The Dark before the Dawn is the one for you. Or check out Chronic Illness Silence to read about feeling like I often have a gag in my mouth about my health. This title says it all – Unexpected Side Effects of Chronic Pain.

Health Update Nov/Dec 2018

22 Dec

I really had to go back and check when I last shared a health update because it does not feel like it’s been a month already! These weeks have gone by so fast, and because of that, I have not kept very good track of how I’ve been doing. Eesh.

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Overall Health:  Fatigue and Fibro have both eased, even before my nutrient IV last week! In between the awful bouts of pain, I’ve had times of almost excess energy. Strange. And wonderful. I’ve been steadily adding my supplements/vitamins back in. Although I did realize that Resveratrol (2/day) causes upset stomach for me! Less than 24 hrs on it and I was having the same problems that I had a few months ago. I cut back to 1/day and am fine again. So. Shrug.

Nov 28- decent day, took 2 naps, 3hrs total. Fibro still flaring and fatigue pretty strong
Nov 29- started 21day workout challenge. 

Dec 11- IV today
Dec 14- a noticably better day overall. No clonidine till @ 10pm. Only slight fibro until later evening. Very tired all day and a little spacy but best day I’ve had in weeks probably
Dec 16- tired all day, oddly energetic late evening. Two clonidine for migraine. Minimal fibropain until evening, left calf cramped. Mood good.
Dec 17- energetic, a bit tired in am but worked out, cleaned bathrooms and juiced. Left calf still tight. Migraine kicked up in evening, very tired in evening

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Migraine: These are still daily – and pretty intense every day, but I feel like they are responding to treatment better lately.

 

Sleep:  I’m still getting just about 7 hours exactly with 2 or 3 wakings in the night. Most nights I am completely exhausted but have to wait til I can get the pain down to a decent level to go to bed. Sometimes my naps ruin going to bed at a halfway decent hour and other nights I’m still falling asleep on the couch at 9pm.

Memory/Brain Fog: After a full month on Turmeric instead of Neuroflam, I think it’s working – at the very least I haven’t noticed a big decrease in my memory. The only thing is that I have had a shorter attention span lately. I’m not sure if that has to do with this or just fatigue?

Vision: There hasn’t been any vision loss this month – huzzah! But I have had semi-frequent blurring.

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TMJ: This has stayed the same – I’m attributing it to the fact that I haven’t been to my bodywork doctor in about four months. It pops painfully most every day and aches so that my teeth hurt daily.

Fatigue: Thanks to getting regular IV’s again, while this is still strong, it isn’t quite so…overwhelming. Naps are a necessity almost every day, and often they are unexpected (read: I sit down to work on my book/blog/crochet project and suddenly I’m waking up two hours later)

Fibromyalgia: I’m happy to report that this has eased slightly. I think it’s because of the extra thing we added to my nutrient IV last time. (of course, I cannot remember what it was called, but it was specifically to see if it helped with inflammation in the joints/the awful aching) My left calf is still tense/self flexing throughout the day and I’ve been getting cramps in my feet/calves again. I’m glad that they haven’t started again in my hands/elbows though. Ice is still the current magic treatment – be it on my calves or neck. If I’m resting, I’ve got one on me.

Weight Loss: sort of?

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Mood: Even though I’m only taking 2 Xiao Chai Hu Tang a day (instead of my previous 4), this has stayed good.

Digestion: This has also been good (well, for me). BUT. As I said at the beginning of this post – I did realize that Resveratrol (2/day) causes upset stomach for me! Less than 24 hrs on it and I was having the same problems that I had a few months ago. I cut back to 1/day and am fine again. So. I’m glad that I realized it quickly.

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And that’s it for this month! I’m remaining hopeful that this coming year will be full of further improvements. So much so that even I can’t miss them. Heh. Happy Holidays and I’ll see you again next week with this month’s Book Reviews!

~Laura

P.S. Did you see this post – How Much More Will Chronic Illness Steal From Me? that I wrote on the emotional side of living with chronic illness? This one, Chronic Illness Silence, I wrote this time last year about how hard it is to share about what chronic illness sufferers go through. This one , The Dark Before the Dawn, is a late night conversation on pain.

P.P.S. For a more upbeat tone, go check out Hesitant Fate, just a short story I wrote from a writing prompt.

P.P.P.S. Watch next month for my Top Reads and Top Posts of 2018!

 

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