Tag Archives: tmj

Health Update Sept/Oct 2017

12 Oct

Whew, finally getting this written! I’m gonna give myself a little plug here before I get started.

If you want more consistent updates on how I’m doing, follow me over on Instagram! I’m on there regularly, sharing how I’m doing with dosage increases, doctor visits and whatever else hits me as I fight to get better! (plus, there’s super cute puppy pictures too)

fightinglymemigraines

Overall Health: While fatigue has been less INTENSE, it is still very present, making it one of my main struggles of the month. Dealing with reaction to Iberogast. Not getting good/enough sleep. Bladder issues.

9-12 IV today. Brain fog but ‘compelled to DO’ today. Drove down to Bend on my own! Days away from cycle
9-14 fatigue day. Migraine kicked up. Bit of brain fog. 
9-15 worse fatigue today. Level 9 migraine in evening. 
9-19 upped Iberogast to 2 drops/day. Felt bad in afternoon and awful in evening. Migraine. Jaw. Achy. Etc. 
9-20 same reaction this aft at yest. But not quite as intense perhaps? 
9-22 putting Iberogast in warm water rather than hot tea. Seeing if this helps my reaction/detox to it. Yesterday’s fatigue was intense. Back hurt in evening
9-27 aft. sparkly vision. Severe migraine and fatigue rest of day
9-28 migraine and fatigue hit in afternoon
10-1 fatigue lingered today, able to get out though. Napped in afternoon. Migraine kept down with 2 clonidine. Upped Iberogast to 4drops/day in evening
10-3 IV today. Added poly mba at the end, along with glutathione. 
10-4 woke up achy and tired but had a burst of energy rest of morning. Migraine kicking in early afternoon. Severe migraine and bad fibromyalgia in evening. Rough night.
10-5 woke up rough and weak. 
10-6 woke up pretty good. Tired but ended up with a lot of energy most of the day, despite brain fog. Migraine and fibropain kicking in mid evening. Can’t seem to stop it. 

10-9 upped Iberogast to 5 drops/day
10-10 fatigue and just feeling overall awful this am. Want to get things done but just can’t…. So tired. Woke up with migraine. After a few hrs was able to get up and DO. migraine flared off and on all day. Only flared a bit in evening.

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Migraines: I have done better keeping track of these on my migraine app. Still a little wonky so I can’t use all of the feedback from it but here are a few. These have been averaging at a level 9. Aura and Prodrome are : headache, muscle stiffness and tingling in head. Triggers seem to be: body aches, interrupted sleep and lack of sleep. Top 3 symptoms are neck pain, fatigue and jaw pain. They typically start in the temples, eyes, jaw and base of skull. Most days I can get the pain down to where I can function – and get things done.

~ an ice pack has been my go-to lately. laying on it, or having it on my forehead helps so much.

 

Sleep: This has been a big struggle for me. Falling and staying asleep is so hard. I always sleep with my heating pad under my neck.

Memory/Disassociation: At times I feel like my memory is getting better but I don’t think it is. (no joke intended there, hehe) I will say that I have’t dealt with disassociation this month. Over-stimulation, yes. Frequently.

Vision: This has only happened once this month. I am so relieved about this!

Fibromyalgia: It has reached drive-me-insane level a few times this month. Augh. My joints regularly hurt – especially my elbows. And that often spreads tingles to my pinkies and ring fingers. It is just about guaranteed to happen if I’m holding something (phone, book, crochet, steering wheel etc) for a long time. (this has improved a bit from last month!) Ice, advil and light massaging help. The self-cramping that my left calf does and the ripples of pain that shoot along the bottoms of my feet still happen. But my hands aren’t self-cramping as bad although I do have to stretch my fingers out often because they just HURT.

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~Pain and anxiety go hand in hand.~ The last few days I’ve felt a restlessness to be HEALTHY, to be WHOLE. To be past this struggle. I feel as if parts of me are dying, withering away under all of this stress, physically and emotionally. I’m impatient to move on with my life. But I remind myself that my main goal needs to be to keep my eyes on Him – the One who is my Refuge and Strength. No matter what earthly trial I am in, He alone is my Salvation, my Rock. As long as I keep my eyes on Him and ask that my will ever is aligned with His, I will have lived a good and full life.

TMJ – This has been popping/hurting a lot still and I’m thinking it’s because I haven’t been to the bodywork dr in months. My teeth ache quite frequently from the stress of me clenching/grinding them at night.

Fatigue: As I said above, this is one of my main complaints from this month. The deep-seated fatigue that just aches and drags me down. I still am compelled to get up and DO things but sometimes the two opposites are at war with each other. Some mornings I am stuck on the couch but then can get up in the afternoon. I want to make a distinction – before it would be so bad that it was hard for me to stay upright in a chair, and I mean, really hard.  Now though, while it is still difficult, I rarely am struggling to stay in it rather than feeling like a cartoon where the character just melts off the seat into a puddle. So, while the fatigue is still bad, it’s not where it used to be.

Weight Loss: I have come out even this month – losing and then gaining it back. I’m a little bit frustrated but I have been less strict on my diet, so….. (by that I mean that I’ve had starch here and there)

Mood: This has improved…sort of. My inward negativity goes in waves, but it’s better than it being constant. I’m sure that being able to get things done around the house helps with this.

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IV time again – Hallelujah! Lovely nutrients with gluithione at the end. We’re also going to try a bit of poly (can’t remember the full name right now) at the end as well to see how I do with it. Was able to have a good talk with the Dr about next possible steps, with some suggestions for tests before the end of the year. Brain fog and fatigue are hitting hard today.

Bladder: This is the other main struggle this month. I can’t get back to how my digestion/bladder were a few months ago. (is it really that long ago?) Even when I was cutting out ALL processed and starch. I am waking up typically 3 times a night to go to the bathroom, even when I don’t really need to.

~I wanted to do a quick update of my progress from this time last year. I’ll try to keep it short. I still struggle with many of these same symptoms as well as have added quite a few. (oh joy). But I have more energy overall. And we’ve figured out more of what’s going on with my body to combat it!

What I’m currently taking:

1 each day of  A, B complex, Calcium, Chaste Tree Berry

2 each day of Ashwagandha, B2, Berberine, Butterbur, D3, E, Feverfew, Fibronol, Magnesium, Xiao Chai Hu Tang, Noni Fruit

3 a day St. John’s Wort

1 drop Ceanothus one day a week. 5 drops a day Iberogast (slowly upping)

on Days 15-28, 1 Horse Chestnut Extract and 2 Chaste Tree Berry

Clonidine – prescription pain pills. Averaging 2 a day

Gelsimium, Pulsatilla, Belladonna, phosphorus and one more… – tincture in water that I take when I need relief

essential oils

~Several of these I need to increase, but I’m focusing solely on the Iberogast right now.

I know this was long this month but I wanted to get it all in!

How have you been this month? Do you have any questions for me about what I’m taking/doing? Ask away!

~Laura

Health Update Aug/Sept 2017

12 Sep

I can’t believe it’s really time to do another health update but this is the first one in a long while that I’m excited to share! I’ve seen baby steps of forward movement in this long healing journey of mine. I will probably end up steps back again in the weeks to come but for now I’m relishing the mini victories. One of them being that I have been just well enough that I’m planning on making the 3 hr drive to visit family and meet my newest nephew! This is HUGE for me, and although there’s a decent level of anxiety about actually being able to do it – I cannot wait any longer to meet little Joseph. ( This little guy makes 18 (!!) nieces and nephews).

fightinglymemigraines

 

Overall Health: I feel like I’ve had extremes this month. I’m either feeling really well or really awful. I am able to see some improvement, though vision loss is a regular thing now.

Dr. Thoughts: She is thinking that I might have SIBO (small intestine bacteria overgrowth) so I am currently taking berberine and iberogast for it. She knows of a new test that is being developed for Lyme that I might be able to have done for free as part of the… what’s it called? Research? (hello Lyme brain right in the middle of a post…) Which would be so great to try and get even more answers.

8-16 started bacteriaphage, awful nausea. 
8-17 woke up with level 8 migraine. Didn’t go down much all day. Fatigue. Not as much nausea from phage
8-18 feel pretty good today. Getting stuff done around the house even. 
8-21 some nausea this am. A little tired but doing good! Yesterday was last day of bacteriophage. 
8-22 IV today. Tired but did good til evening, as usual. Migraine flared. 
8-23 fatigue in am, then mild nausea as well in the afternoon. Ears sensitive. 
8-24 upped lightning pearls to 3/day
8-26 last few days, fibropain has started flaring. 
8-27 slight spasms of fibropain. Pinky and ring fingers been tingly last few days. started berberine. 
8-30 past few days, teeth have been hurting. Jaw worse than normal. Today fibropain in elbows and wrists. Pinky and ring finger on left hand have been tingling all day. Most likely from sanding the other day. Fatigue and achy stronger than it’s been. 
8-31 vision blurry and sparkly early afternoon. Slept 2hrs. Migraine flared to a 9 in evening. Weak. Achy. Migraine down to an 8 now. Day 14.
9-2 feels like another vision loss day coming… 
9-4 started iberogast. 9 drops/day. 
9-5 rough day. Fought off losing vision but migraine high and body weak.                                 9- 9 dropped iberogast down to 1 drop/day, reacting too strongly to it. mild tingling and cramping in same places as on the 30th. 

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Migraines:  There has been some improvement. Mostly during the day. I’m able to -at the least- keep the level down, more easily these days. They still flare up intensely in the evenings. As well as if I’m around anything LOUD or overly BRIGHT (making it difficult to sit through service or a movie, or spend much time in any sort of store…)

~I am doing better keeping track of my migraine on the app on my phone, but not good enough to be able to use the information from it. I miss having that info, so I’m really trying to remember to take the time to do it.

Sleep: I’m still cycling Theanine and Melatonin most nights but even with them, I’m waking up several times and only asleep for just about 7 hours.

Memory/Disassociation: I am seeing sporadic improvement in getting over-stimulated, and not disassociating quite as often although it’s still frequent. I find that I am more and more reluctant to leave my house because of it. I’m not sure if there’s been any change in my memory. Oy.

Vision: I now partially lose – or almost lose- the vision in my left eye about twice a week. Often I am able to keep the following level 10 migraine to a short one, or avoid it altogether. While I’m thankful for that, it’s still very frustrating to have this vision issue so frequent. The feeling that comes with it is awful and the fear/anxiety is terrible.

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Nutrient IV and a great read – Jane Eyre

Dizziness: I almost feel like I could take this one off the list for now. I don’t get dizzy very often anymore

Fibromyalgia: For a second month in a row, the drive-me-insane level of pain hasn’t come. But it’s been just under that several times — where i’m bouncing my leg or such because it hurts too bad to be completely still but it hurts too bad to get off the couch and actually move. Oof da. My joints regularly hurt – especially my elbows. And that often spreads tingles to my pinkies and ring fingers. It is just about guaranteed to happen if I’m holding something (phone, book, crochet, steering wheel etc) for a few minutes or longer. Ice, advil and light massaging help. My hands still curl up and feel as if my fingers are tensing on the inside – as well as the self-cramping that my left calf does and the ripples of pain that shoot along the bottoms of my feet.

TMJ – This has been popping/hurting more frequently again and I’m really thinking it’s because I haven’t been to the bodywork dr in months. My teeth ache quite frequently from the stress of me clenching/grinding them at night.

Fatigue: I’ve noticed something interesting this past month – Most mornings I am almost…compelled to get up and DO. Clean. Take the dogs to the park. Prep dinner. etc. I just have to be UP and doing something. Even when I know I need to stop and relax, its like I can’t… and I’m not sure why. I haven’t had a lot of awful fatigue, it’s been mostly a level 6 on a scale of 1 -10.

Weight loss: I have been a little bit stricter this month on what I eat, which means I’ve lost about 2 lbs this month. I’m pleased with that because it’s really hard for me to lose weight.

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I fit into these slacks for the first time in months!

Mood: I don’t feel that this has changed much. I still get frustrated easily, and have more negative thoughts than normal.

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Bladder: I just realized that I haven’t mentioned the fact that I tried a new 5-day treatment specifically for the Ecoli strain in my gut – it was bacteriophage. (I mentioned this in my Instagram). For that week-ish, my digestion was better, as well as any bm’s. (i’m trying not to be too tmi here, but digestion issues are common in those dealing with Lyme). Since then, it’s been a bit more touch-and-go, which is frustrating.

Next month I think I’ll do an update of everything I’m taking, as well as compare to where I  was this time last year. (It’s been just over a year since I got a diagnosis). But for now, I’ll close with a question:

Are you seeing any forward movement in your dreams? (be they health, career, hobby, etc related)? 

~Laura

Also, Abby Pond turned two at the beginning of the month and (thanks to google photos) I made this video!

Health Update : July/Aug 2017

15 Aug

It’s interesting to go through the past few health updates each time I write a new one to see how I’ve progressed/regressed. It is so easy to just see the mountain you’re climbing that you forget how far you’ve already climbed! The struggle with this battle is that there’s dips and valleys and straight-up peaks that I’ve got to get through and over. Some days I don’t feel up for the challenge but right now, I’m ready for it. I will one day be healthy enough to have the homestead I dream of. I will.

fightinglymemigraines

Overall Health: I have had some LOW lows and some pretty good highs this past four weeks. But, the lows don’t seem to be lasting quite as long as they used to. I even have gotten out for some fun a few weekends.

Notes: 7-7 teeth are aching. migraine. Fatigue all day. Need to take a bath but it’s just too much. Fibropain is kicking up late in evening
7-8 fibropain is in arms, not severe just.. There. Migraine trying to kick in. Tired but can’t sleep
7-9 fatigue and migraine all day. fibromyalgia flaring bad this evening can’t sleep
7-13 fatigue not quite as intense. Fibropain flared in left hand and in calves. Migraine came in evening. 
7-18 slight pain over heart. Fatigue. Migraine trying to kick up -able to be out and about for @6hrs. Back and feet hurt after
7-19 started liver ‘pill’ trial. Went out for a few hrs, migraine kicking up early afternoon. Fatigue and migraine even after 2hr nap. 
7-21 woke up with bad fatigue and migraine. Had to stay home all day. Took two naps, over an HR each, didn’t help with fatigue. Going to bed with level 8 migraine and exhausted. Some fibropain today too. Days away from monthly
7-23 (yesterday i felt pretty good) migraine, nausea and fatigue today. Took a 2 hr nap. Woke up dehydrated, as usual. Brain foggy. 
7-24 afternoon/evening severe (level 9?) migraine. Fibropain flared but not severe. 
7-26 level 10 migraine. Vision was funny off and on all day. Got sparkles in left eye around 4pm. 
7-27 starting fibronol again
8-1 IV today. Woke up shaky, weak and migraine. Severe migraine in evening
8-2 woke up with migraine. Got it calmed enough to sand chair for half an hour
8-3 upped fibronol to 2a day
8-5 another vision loss migraine. Pain didn’t stay severe as long. Nausea. (had gone to see movie in a theatre)
8-7 started Lightning Pearls. Felt pretty good today, migraine kicked up early aft.

8-12/13 felt good overall. so days 21/22 of cycle. still took a few clonidine each day

8-14 worked out for half an hr. upped lighting pearls to 2 a day.

We added glutathione to the end of my IV this last time. The IV’s help so much in reducing my symptoms that I’m excited to add more helps to them.

Sleep: I ran out of Theanine so I was taking melatonin almost every night to help me get to sleep and boy, oh boy, that’s never a good idea. I finally figured that even with how poorly I sleep on my own, at least I wouldn’t be having the nightmares that regular melatonin brings. Thankfully my new bottle of Theanine arrived the other day

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my ‘you don’t always have to be thankful it’s not worse’ face

Memory/Disassociation : These are both unchanged I believe. Although this past Sunday we were out and about all morning and I did very well.

Vision: Along with getting level 10 migraines more frequently, my vision has been ….funky. When those severe ones hit, I’ll lose the sight in my left eye. Thankfully, we have figured out the treatment to get the pain down quickly (or even avoid the severity altogether) as I used to lose sight for half an hr. And then the pain would swoop in about 20 minutes later and last HOURS. So I’m glad we’ve figured out part of it. But now I’m noticing just… irregularities with my sight sometimes. Trying to read – computer or printed page – can be nauseating and the light/words seem to move.

Dizziness:  This has only been present a few times

Fibromyalgia: While I will feel discomfort/tenseness in my calves and writsts/arms, and occasionally shooting pains, the drive-me-insane levels haven’t come back this month. I am curious if this is the fibronol doing its thing. Ice and advil and heat are still my friends for this

Fatigue: This has been back and forth. It will knock me out flat for days at a time and then be on the back burner. I’ve noticed that sometimes getting up and doing something for a few minutes helps ease it

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I now need this shirt

Weight Loss: I haven’t been as consistently strict on my eating this past four weeks which means I haven’t done as well at losing weight.

Mood: Still no major mood swings but it’s still been a struggle. Getting frustrated easily, or just having negative thoughts a lot would throw me all off balance. It has been better the past several days though

Bladder: This had been marginally better but not anymore.

~In an effort to focus on the things that I can do, here’s a few things that I’m currently thankful for : I’m able to make dinner almost every night. I’m now able to drive myself to my doctor appointments. I’m also able to run errands on my own. My attention span has been a little bit better.

~On the flip side, little irritants : the floaters in my eyes lately are driving me crazy. my hands instinctively curl up/tense, which hurts. If I sleep at all without my night guard, I pay for it. severely.

I feel like we’ve made a few strides forward this month and I’m just praying it continues

How have you been this month? 

~Laura

 

 

 

Health Update : June 2017

14 Jul

Hello everyone!

I pulled up my migraine app to write the stats down, all the while thinking that I haven’t been keeping very good track lately when this confirmed it : 2 attacks the past month, my average attack duration is —wait for it…… 145 hours and 35 minutes. (coughcough) so I’m gonna skip this entire section of update because it’s all faulty.

fightinglymemigraines

Overall Health: the first three weeks of June were terrible. Straight up terrible. But! I also started getting nutrient IV’s and they seem to help so much. I feel like we are starting to figure some stuff out about this poor body. The last week-odd was so much better – all my symptoms calmed down SO much. Although disassociation is still a problem when I’m out and about.

Notes : 5-26 upped xcht to 2/day . Nauseous. Exhausted. Migraine kicks up then recedes on its own. Feeling a bit snippy and lonely today. Waiting to hear back from Dr about upping ceanothus or starting fibrobol.
5-28 starting fibronol, 1/day. Haven’t heard back from Dr, decided to just do it.
5-30 fibropain has been flaring for the past few days bad. Hard time getting it to ease. Trying the white Willow forte for it instead of Advil.
6-1 appt with Dr v today. Left side feels better now. Also started cycle early this am. Pretty miserable all day. Exhausted.  Migraine kicking my butt. Off of fibronol- was causing unexplained bruising.
6-2 first IV today
6-12 migraine not staying down today. Fibropain is starting to flare in late afternoon. Hard time focusing on anything for more than a few minutes. Really wanting to start the detox, hoping to get to the produce store tomorrow so I can. Migraine flared to a 10 in evening. Debilitating. Awful. Body was a heavy weight that I couldn’t move. Tears. Fell asleep around 8pm and slept off and on till the next am.
6-14 day two of recovery. Able to do dishes this morning but exhausted and achy now
6-16 still can’t get rid of this migraine and fatigue. It’s sticking around an 8. Evenings are still rough but seem to be getting easier as they go on. Nothing seems to ease the migraines much
6-20 2nd IV today:
Potassium
B complex (5, 6 a and 12 as well)
Vit C
Calcium
Magnesium
Saline
Fighting a cold as well. Been better this past week-ish. Fibropain has diminished -except for shoots of pain. Migraines responding to treatment better. Highest an 8. Fatigue still awful

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morning dose

*It wasn’t the fibronol that was causing unexplained bruising. I have since started back up on the fibronol because the bruising is still happening. I also realized that the Ceanothus was causing some serious herxing so I am going to start taking it only one drop a week.

Sleep: Still rotating Theanine and Melatonin in order to fall asleep. Having a hard time with falling – and staying – asleep again. Especially when the fibromyalgia kicks in.

Memory/Disassociation: Like I mentioned above, I’ve noticed that disassociation kicks in when I go out in public. I suppose I could be having it here at home too but just don’t realize it. hmmm. Anyway, memory might be improving a little.

Vision: I’ve started getting ‘floater’s in my vision a bit which my dr says can be a vitamin k issue (I think this is right, it goes along with some other problems I’ve been having)

Dizziness: Thankfully, this has stayed mostly calm – but not completely

Fibromyalgia: This seems to flare for a few weeks and then calm down. Right now I’m in the  it’s-coming-back-soon stage. It definitely reached higher intensities, especially during my level-10 migraines. Advil, heat and ice seem to be the only things that help.

Fatigue: this was consistently bad the first three weeks. It eased the last week odd but has since come back with a vengeance.

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Weight Loss : Since I cut processed sugar out and reduced any starches (beginning of May) I’ve lost a total of 5 lbs. I’m excited about this because it’s been steadily – slowly- dropping and any attempts before to lose weight didn’t work. As long as I stay strict like this, I think the weight will continue to drop. (it’s funny because it’s typically 0.8lbs a week.)

Mood: I’ve been good on this and yet not… The mood swings and major struggles haven’t come back but I’ve struggled with getting frustrated at the downward swing of my heath.

Bladder: I haven’t noticed any changes in this area

 

 

~ I am trying not to worry too much about the fact that I’ve started getting level-10 migraines again. Trying. Because, honestly, it’s freaking me out.

~ It would be wonderful if I could go in regular for acupuncture and bodywork. And I really want to try the infrared sauna as well as the sensory deprivation room (because, I just couldn’t do the ‘tank’ – hello claustrophobia). There are a few other treatments that I’ve looked into that I would like to try but due to money – and insurance not covering anything I need for Lyme treatment – I just can’t. It has been a big point of frustration for me this month.

 

~I am going to start looking into getting disability which completely overwhelms me just thinking about it. If anyone has any tips or suggestions, I’d absolutely love to hear them!

~Laura

I am on Instagram where I update/share how I am doing pretty regular if you want to check it out

 

Health Update for May 2017

26 May

Happy end-of-May dear readers! I’m typing this out on my back porch with Lady laying just inside the open door and Abby running back and forth between me and the bone in the yard and OH in the living room. It’s a good evening so far.

fightinglymemigraines

 

Migraine app notes: I had 10 attack days lasting average of 68 hours. I had 2 attack free days. I took 56 clonidine ( 4 more than last month) They happened 50% of the time from 12 pm to 6 pm. Average pain is 7.5, which is pretty good. Supposedly I’m sleeping around 8 hours a night, migraine or not. ha. If only. Top 3 aura/prodrome are muscle stiffness, fatigue/achiness and weakness. Top 3 triggers are neck pain, too much activity and lack of sleep.Top 3 symptoms are neck pain, jaw pain and aches. Frequent start positions are the same, temples, jaw, eyes, base of skull. Soaking my feet has helped a lot this month

Overall Health/Treatment: Up until this past weekend the neurological pain (aka Fibromyalgia) and all was terrible and I was pretty much on the couch. I had some bursts of energy  but not until recently  did it ease enough that I felt like getting up and doing something. I struggled with anxiety/guilt a lot as well. Focused on adding in/increasing supplements to support this poor body.  The evenings are the worst, no matter what I try. I’ve been going to bed in a lot of fibro pain and migraine, just praying I’ll be able to sleep.

notes: 4-28-Migraine was worse today. Aches eased until evening- went to dog park and made dinner then they increased in my calves bad. Barely able to keep migraine down today. Nice to have some energy and the brain fog lifted but the pain’s wearing me down. Have had some muscle twitches today

4-30- today has left me bone- weary. Even the movement of my tongue hurts my jaw. The all-over aches have eased a little, but the cramps are little shivers that regularly run through the base of my feet. Bad migraine today. Wasn’t aware of what was going on around me for a while. Nap helped but body is SCREWED up. Tomorrow is going to be a day of loving on it. 

What do you find hard to tell people about your health? 

 

Health Update – April 2017

28 Apr
 It’s been a very rough month, full of reasons that I have to move, even when I’m working with no spoons. Ugh. As important as I know doctor appointments are, I admit to wishing many times that I could just stay home on my couch.
I wrote a post on pain keeping you up at night a few weeks ago, go check it out! If you want to follow me on instagram –  I do regular updates on how I’m doing and share lots of happy puppy pictures.

Health Update – March 2017

29 Mar

 

What a month! Spring is starting to show up here and we are so very ready for it. I’m dreaming of a small container garden and getting the landlord here to spruce up this yard of ours (he’s also a landscaper.) This time last year I had roses on my bush, it’s definitely a delayed spring!

Well, on to the topic of fighting this Lyme disease.

fightinglymemigraines

Migraine app notes – I’ve had 7 attacks, lasting in average of 72 hours. So, while they’ve absolutely been lasting longer, I’ve had 6 attack-free days. Which I believe is a record! I’ve been getting an average of 7 hrs of sleep each night – this doesn’t typically account for the getting up a few times and tossing and turning. I’ve taken 38 Clonidine. They happen 80% of the time between 12pm and 12am (ha! so helpful,that). Average level is 7.9. Top three auras/prodrome are fatigue/achiness, headache and weakness. Top three triggers are neck pain, interrupted sleep and lack of sleep. Top three symptoms are jaw pain, neck pain and throbbing pain. Frequent start positions are the same as usual, temples, eyes, jaw and base of neck.

( Comparing to last month, I added one attack-free day and the pain increased slightly while the duration rocketed up.)

Overall Health/ Treatment: Some days I feel like I’m starting to do better – and then the little evil bugs laugh and do a stealth attack. I’ve had a few symptoms ease/disappear which is wonderful. I’m going to keep my notes from this month instead of re-typing them. =)

3/18 note  – started taking iron again today – at 5 ml 2x a day to get used to it. am continuing taking antibiotic (doxycycline) for another 2-4 weeks to see if it helps or not. started a probiotic ( sacro-b) what with taking the antibiotic longer.  went off of: garlic, ehb, epo. Finishing my bottle of Silver, then going off it too. dr suggested i start having bone broth. she also wants me to do a metal toxicity test, i’ll do it after i get back from bend next week. since we aren’t making any headway with what we’ve been trying, she wants to go a different track. Dr also wants me to start taking butterbur. need to start taking the xiao chai hu tang again.  –pain has been awful these past two weeks, plus i got sick and then started my cycle a few days after getting over the cold. migraines hit hard in evening and sometimes i wake up with them in am. have lost 1.6 lbs last two weeks.

3-24 – started back up on doxycycline on the 20th. As well as the sacro-b. Upped my iron to 15ml a day on the 22nd. Taking phosphorus 1-2x a day. Needing melatonin to sleep still. Pain is definitely worse in evenings. Still daily migraines, tmj and calf/feet tenseness and a bit of cramping. Migraine seems to ease a bit more quickly the past few days. Skin is clearing up again, hopeful it’s the antibiotics and it’ll stay clear. Able to focus again, have even been writing.

3-29- ceanothus – trying 3 drops am, 2 drops aft, 1 drop  eve to see if it helps with the evening migraine and fatigue. have gained back the weight I’d lost.

Migraines: They have increased in intensity without hitting 10 at all, I don’t think! that’s cause for celebration, folks. This past week-ish they seem to respond to treatments a bit better. The rest of the month, they were resistant to everything.

Digestion/TMJ: Once again, my digestion is off. Looking forward to stocking the house with healthy options and see if I can get it to calm down again. TMJ… I’ve been clenching/grinding so much lately that my teeth hurt most of the time. The jaw pain is normal now. Finally rescheduled my appointment with the ‘jaw doctor’ as I’ve labeled her, since I had to cancel my last  appt when I was sick. (anyone else find that statement ironic, ‘when I was sick’?)

Sleep: I’ve been needing Theanine or Melatonin to get to – and stay – asleep. It’s frustrating since I was able to get off of it for a while. BUT! The night sweats have gone away.

Memory/Brain Fog: Brain fuzziness (a step down from fog??) reappeared while I was in Bend. Over-stimulation perhaps? It was strongest on my birthday, sadly. Gives one the sense of not being present. I’m hoping this eases soon.

Vision: My eyes still frequently get blurry, or just take a bit longer to focus than they should. It hasn’t progressed though.

Feet/Leg cramps: The cramps are random and maybe once a week now. Typically it’s just tenseness – which can be distracting and painful on their own. Sometimes soaking them in epsom salt helps.

Dizziness: This got worse recently, but I haven’t been watching my salt intake.

Joint Pain: This has mostly shifted to my knees/ankles. I’m so thankful that it has left my fingers – that was the worst for me.

Fatigue: This is still a struggle. Like I said above, I’m gonna try taking 1 drop of Ceanothus  to see if it helps.

~I have started following some fellow lyme disease sufferers/warriors on Instagram and in talking with one of them the other day, I learned that ‘they’ have recently learned that you can get Lyme, not just from ticks, but from other nasties like mosquitos, fleas and spiders. SPIDERS, people. I’ve been thinking back on my symptoms lately and kept getting stuck on the timeline of when I was in Culinary school and got a rather awful spider bite on my cheekbone. It swelled up so bad that it impaired my vision. Now, I grew up in an older house and got bit all the time so I didn’t think anything of it. But now…. It doesn’t really help much, other than to mentally be able to put more of a year on it. By then, I’d had migraines for a few years but after that… everything started to crash. Literally.

That’s all for today folks, I’m gonna rest and then – hopefully – get out to go grocery shopping!

Happy Wednesday,

Laura

 

Health Update – 12-2-16

2 Dec

Happy December friends! Thanks for stopping by SGL today, I’m so glad you’re here! Once a month, I review how I’ve been feeling – how the treatment for my Lyme Disease is going, and all the other fun things I’ve got going on.

fightinglymemigraines

November was a month of contradictions. For the majority of it, I felt really beyond awful. But when I felt good – I felt really good! There wasn’t much in between for me. I had some ‘fun’ new symptoms start/kick it up a notch and my migraines tended to last an average of 55 hours. Yep. 55 HOURS. If that’s not fun, I don’t know what fun is. Stores are still places of pure torture wrapped in spikes and crocodiles.

For a quick report from my migraine app – Migraine Buddy –  88% happened on weekdays, 12% weekends. Average pain level was 7.6 , high was 9 and low 6. My top Auras were fatigue/achiness and muscle stiffness. My top 3 triggers were neck pain, interrupted sleep, pre cycle. Top 3 symptoms were neck pain, fatigue and throbbing pain. Frequent start positions were temples, eyes, jaw and neck. Reliefs that seem to work consistently are : clonidine, oils, belladonna/pulsatilla and heat pad.

Overall Health: Much the same as October, ROUGH. Like I said, fun fun symptoms to keep me guessing. Lights and sounds started hurting bad again. Constant calf cramping (literally 24/7) along with severe random cramps no matter what I am doing. A harsh cough a few times a week (you know that deep, painful cough you get when you’re sick? yeah. that.) Daily fatigue/achiness.  Ringing in ears off and on.  Some nausea when I move. I lost a few pounds, only to promptly gain them back.

Due to the calf cramps, sleeping has been difficult. For a few weeks, I wrapped up in my cozy electric blanket most every night – it was the only way to ease the pain so I could sleep. I’ve started soaking my feet more often, hoping the epsom salts helps.

Treatment: I have backed off the garlic pills, to just one a day and have added back in the Xiao Chai Hu Tang. I started with one pill a day and have gone up to 2 a day this week to see how I do. Otherwise, I am on everything my doctor put me on last time I was there.

Migraines:  So, on one hand I feel they are getting better. On the other – 55 hours. I’ll take what I can get but aren’t they supposed to get shorter too????

Digestion and TMJ :  digestion has been touch and go – what with feeling so poorly it was hard to cook (read: pasta and french fries) and juicing pretty consistently…. I definitely digest better when I stay away from breads/pastas/etc, and drink at least 3 glasses of juice a day. (juice being kale, cucumber, celery, carrots, lemon, ginger and apple). My jaw hasn’t been good. often it’s been an indicator that pain/migraine was on its way.

Sleep: My app says I’ve been getting about 7 hours a night but I certainly don’t feel like it! I am still waking up 2-3 times a night to go to the bathroom, and sometimes can’t go back to sleep the last time. I’ve been taking a lot of long naps lately – but still am exhausted by late evening.

Memory: this might actually be improving – or at least it stopped its downward spiral. Being in Bend for a week with family and friends, I noticed I wasn’t saying ‘um’ as much, or searching for the correct word. Granted, I still did it but I was able to carry on a coherent conversation and that wasn’t the case a few months ago.

Daily Vitamins/Supplements:

Clonidine – averaging 2 a day (although many, many days these past few weeks I’ve needed 3, and sometimes 4 to get through them. ugh)

Pulsatilla and Belladonna – I’d run out of one in time to replace it before I went on vacation and then promptly ran out of the other. oy.

1 each of B complex, B2, Calcium, D3, Fish oil, Copper, Garlic (trying 2 every other day of garlic)

2 each of Magnesium, Olive Leaf Extract, Vitamin E

3 Evening Primrose Oil

6 EHB

on Days 15-28, 1 each of Horse Chestnut Extract and Chaste Tree Berry

1/2 tsp Silver nano ( 2x a day)

1 TB Apple Cider Vinegar in a glass of water in the mornings

 

That’s all I can think of. I am feeling like this Lyme Disease is kicking my butt right now, so it’s probably good timing that I’m going in to my dr. tomorrow morning to get some motivation and encouragement (yep, she’s that awesome) along with some acupuncture. I don’t know if some of this is herxing or what, but I’m done.

*on a purely fun side note, I won nanowrimo!!! i’ll tell you more what that means next week! *

~Laura

Feel free to check out my other health updates here on my Chronic Pain page!

Health Update – 9/23/2016

23 Sep

How in the world can September already be almost over?! Although, the coming of all things pumpkin and fall does help ease the shock of it 😉

 

fghtnglyme92316

Overall Health: since getting back on the majority of my vitamins/supplements I’ve been better – comparably. For about a week I was stuck on the couch due to unbelievable weakness and exhaustion. I haven’t been quite so negative. I haven’t had to nap so often lately, but sleeping at night has been really rough. I’ve been able to walk the dogs a few times a week, which benefits all 3 of us.

Treatment: I went in to my doctor the beginning of this week and we changed up what I’ve been taking, and she sent me home with several new things to start! I am currently off the Xiao Chai Hu Tang (possibly the cause of my extreme exhaustion last week) and have started taking Silver. (yes, silver! apparently while it’s very gentle on you, it kills things, who knew?) Tomorrow I start taking EHB, then if I don’t react negatively to that, 3 days later I start Garlic pills (oh joy). 3 days later, Vitamin E and then, you guessed it, 3 days after that, Copper pills. She’s also told me to start drinking 1 TB Apple Cider Vinegar in the mornings.

Migraines: Killer. They have been going from a 5 to an 8 (or higher) in the blink of an eye, making thinking (and anything else really) incredibly difficult.

Digestion and TMJ: Neither have changed here-which means they aren’t that good… but while my jaw has been hurting a lot, it doesn’t pop as much as it used to! Silver lining right there!

Mood: It’s been better overall this past month, thank goodness. I feel like I mostly am back to myself although I do still feel a tad anti-social

Sleep: Except for the past few nights, it’s been atrocious. Of course, the nights I do sleep better I have nightmares..sigh.

Memory: Once again, it hasn’t improved but aside from freaking out late one night because I couldn’t remember words to songs that I’ve known for ages, I haven’t noticed any worsening.

Daily Vitamins:

Clonidine – for most of this month I was taking 3 a day but since Sunday it’s backed off to 1 or 2 !!!!!

off the Xiao Chai Hu Tang

Pulsatilla and Belladonna – finally got some more of these amazing tinctures!!!

Here’s a full list  – although I will have to update this next month!

Stick around and check out my other health updates!

8/23/16

Symptoms of my Lyme

7/27/16

Fighting Lyme and Migraines

The Big Health Update

 

Next week is the monthly Book Review, come back and check it out!

Have a fabulous Fall weekend,

Laura

 

 

 

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