Tag: nerve pain

Stepping Down on Tegretol SUCKS

Bones

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It’s been almost a week since I reduced my dose of Tegretol from twice a day to once a day, and my body is still acclimatising.

The first day was excruciating.  I couldn’t think, had no balance, everything hurt (including my face).  My skin was overly sensitive and every sensation was unpleasant or painful.  My team took one look at me and said go home.  I sat down and did some work, but then gratefully took them up on their suggestion and went home to curl up on the couch and watch my latest high value distraction: Mind Hunter.

The second day was a bit better.  I no longer felt like every part of my body was on fire with fever aches.  I didn’t have much balance, and in fact I sat back from interacting directly with the horses during our practical session due to this, but I was more alive than day one.

I’m now almost a week in.  I’m pretty sure I’m coming down with a minor cold or something of that ilk, as I’ve got the heavy duty fever aches, extreme lethargy, and overall fogginess.  While this is a symptom of my fibromyalgia, it’s usually reserved for ‘coming down with something’ rather than ‘you’ve done too much’.

I will not be getting acupuncture this week, as my acupuncturist has had a family emergency.  I’ll see if I can get two acupuncture treatments in next week or the week after, whenever he’s back, to hit the trigeminal neuralgia hard.  It’s been acting up a bit on one tegretol, and I’d like to settle it back down.

As you may be able to see, my thoughts are still sluggish and somewhat disjointed.  I’m going to blame that on the plague rather than the tegretol, and have a nap.

Tegretol – Day 4

Bones

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Whoa, I have been through such a variety of side effects with Tegretol, almost a new one each day!

The first day was fine, just a bit of dizziness and loss of balance, nothing unusual.

Day two was worse, I was high and euphoric and so intensely itchy.  I was very careful not to itch anything and to only rub the areas that were itchy, but it drove me mildly insane.  The only benefit was, well … I was high.  So it bothered me, but not that much.

The itchiness began on my neck and shoulders and spread down my arms.  I couldn’t wear anything on my arms, because it went beyond itching into pain.  My legs itched, my back itched, my waist itched, even my breasts, and under them, itched!

When I lay down to nap that night, I noticed sharp stabbing pains up my arms and legs.  It wasn’t overly bad, more like the sensation of a decent sized needle, only in a larger area.  I still fell asleep.  Boy does the Tegretol help with sleep!

Day three I was high as a fucking kite, I was euphoric and joyous and I could have sat and watched the tree outside move in the wind all day.  I was dizzy, had difficulty focusing my eyes, and my balance was gone.  It was only through intense strength of will that I could walk straight.

Day four I’m still pretty high and euphoric and my balance is still out of it.  My tinnitus is louder.  My hearing is hypersensitive and I’m more reactive to sounds.  My skin is hypersensitive to texture, and even my usually comfortable clothing is a bit too much.  It would be a problem if I weren’t so chill and happy about everything.

Now one very important thing of note, if anyone is reading this blog specifically for the side effects I have been experiencing, Tegretol can induce some very serious and potentially fatal skin reactions.  If you, or someone you know who is taking Tegretol, are experiencing any itching, rashes, blisters (this includes in your mouth, on your tongue, or on your lips), or skin discolouration, THIS IS A MEDICAL EMERGENCY, PLEASE SEEK MEDICAL TREATMENT IMMEDIATELY.  These are symptoms that your skin is possibly going to begin to necrose.

I and my amazing human are monitoring me very closely for any rashes or skin discolouration in light of my itching.  Hopefully my skin decides to stay alive and in one piece!

Double the Pregabalin

Bones

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I started taking pregabalin on the evening of my last day of work last year.  I did this specifically because we had a very busy period in the lead up to Christmas, and I did not want to be in any kind of vaguely altered state during this mad rush.

As it turns out, it was a good idea, as I experienced some fairly hefty dizziness during my first few days on pregabalin.  I was on the lowest therapeutic dose, 75mg twice daily.  My doctor advised that we had room to quadruple my dose, depending on how I responded, and we were

The week before last I had my first week of work experience, and so my first week of doing stuff, while on pregabalin.  75mg twice daily did not quite cut the mustard, and I found myself in quite a bit of pain by day two.  I also found myself with absolutely no energy by the end of each day, making it home as a zombie and crawling onto the couch to put my feet up.

Last weekend I doubled my dose.  This time the first couple of days involved some decent dizziness – nowhere near as dizzy as starting pregabalin, but definitely bad enough that I wasn’t keen to drive, but by the third day I was able to get around confidently.

It was immediately apparent that I had an increase in energy levels.  I have been able to do more during my days without exhaustion setting in.  On Thursday, I was up and moving / working / cleaning from 7am until 9.30pm, and while I was exhausted on Friday, I was no where near as achy and dead as I normally would have been.

I also have a much greater sense of peace and contentment.  Fluoxetine has worked very well for taking the edge of my anxiety and depression.  My resting heart rate gleefully sat at around 80-90, while my standing up and moving around heart rate would range from 95-115.  My heart rate, even lying down, would very rarely dip below 80.  My sleeping heart rate would be 50-60.  For me, these are pretty good values.  Before this I would usually have a resting heart rate somewhere in the 90s.

On amitrip (with fluoxetine), I’d have similar values, except for Tachycardia Monday, where my heart rate would consistently be over 100 (sometimes as high as 125) until about midday, and then it would go back to normal.

On 75mg twice daily pregabalin (with fluoxetine), I had fairly similar values as to fluoxetine only.  On 150mg twice daily pregabalin, my heart rate very rarely goes above 100 (even when I’m standing up and moving around) and typically sits around the 70s when I’m sitting and the 90s when I’m moving.  Sometimes it even goes as low as the 60s when I’m lying around!  Since beginning to wear my Apple Watch (specifically for this reason) almost a year ago, I have not recorded values as good as this.

So not only is there a clear physiological effect of lowering my heart rate (I suspect by some cool actions on my central nervous system), it also has the effect of relaxing me mentally, and giving me a sense of calm, contentment, and relaxed energy I have only really experienced when on a really good holiday.

I am hopeful that this continues for the long term and it’s not just my brain getting used to the increased amount of pregabalin.  If it does, I may have my life back!

Amitriptyline – That’s a No Go From Me

Bones

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I’ve been on 10mg Amitriptyline every evening (along with 20mg fluoxetine every morning), and it has finally settled in enough for me to say, no, this is not working.

It’s one of the more difficult things to do, stop and admit to yourself that this medication that should be helping you (and oh god don’t you wish it was) actually isn’t.  I mean, it sort of is, and sort of isn’t, but the positives are outweighed by the negatives.  Then you have to go back to your doctor and say ‘this isn’t working’ and they pry for reasons why and sometimes it’s hard to put the reasons into words.

Fortunately for me, it wasn’t.  My negative side effects included, but were not limited to:

  • Tachycardia Monday (I wish it was on Tuesday because that would have sounded cooler) – where my heart rate was consistently 100-130bpm for the majority of the morning, every Monday.
  • Consistently higher heart rates across all activities.
  • Intention tremors when I’m tired.
  • Increased anxiety and depression.
  • Increased headaches and visual disturbances.

So I told my doctor and he suggested we halve my dose (I’m already on the lowest dose tablet) and re-visit in a few weeks when he’s had an opportunity to read up on what else might treat fibromyalgia.  I’m pushing fairly hard to try a different medication.

I’ve been on 5mg Amitriptyline for the last week and the change is huge.  I feel excited about things again, I’m happier, more relaxed, and generally more positive.  I don’t have tremors anymore, woohoo!  Everything’s coming up Milhouse!

Except with the lower dose of medication that was managing my pain, I’m now in more pain, which I’m not quite so keen on.  My arms, which haven’t ambiently ached (for no reason) since starting on amitrip are flaring up again.  Usually the aches are confined to my hips, thighs, and lower back.  I’m having random spots on my skin where touch there is excruciating – something as simple as a cable brushing against my arm feels like a fire brand.  Sometimes where I like to sit the sleeves of my cardigan is overly sensitive.  I haven’t been able to wear my watch because it’s been too painful.

You win some, you lose some.  At this point I’d rather this level of pain than trembling so hard I can’t even do up a button.  When I see my doctor next I’ll be pushing for a new script to try, and for a referral to the frightfully expensive (private) pain management specialist he mentioned.  It’s time to get this ball rolling faster!

The Reality of Fibromyalgia

Bones

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I’ve had a fairly packed few weeks, and I’m looking at a full schedule until … probably mid February.  My anxiety is considerably higher than normal, as there’s a lot to get done over the next few weeks.  I’m physically doing considerably more and resting less.  This has a lot of consequences for me.

First being that my fibro is flaring up.  Which, yeah, go figure.  It means random parts of my body hurt.  On Friday, the middle knuckle on my right hand hurt.  Yesterday, an old injury on my left foot started hurting (and still does).  Bits of my leg hurt, and then stop hurting at random.  My knees ache more, my right elbow started hurting … you get the picture.

Today I experienced a new symptom.  I had a shower, which was all well and good.  I was drying myself off when I felt pain running down my left arm.  I quickly turned my arm over.  It was a water droplet running down my arm.

I felt some not inconsiderable pain from a water droplet.

I briefly panicked and then bottled it up.  I didn’t have the time to panic about it, so I didn’t.  It’s only now, in the later hours, that I’m sitting down to process this new facet.

Pain from a water droplet.

I’m used to abnormal pain after an injury, or additional pain after physical exertion, but this is new.  This is normal sensory input being processed as pain.  This is something I cannot excuse away as ‘a bit rough’ or ‘a bit sharp’, it’s a water droplet.

Realistically I’ve experienced this before.  Sometimes when my amazing human rubs my head or my arm, it hurts.  I’ve had days where pillows hurt to lie on.  But I have always rationalised them away – my amazing human was being unintentionally rough, or his nails were too long, and I just had a really bad headache so I was sensitive.

This is the first experience I can’t rationalise away.  This is clear proof that I have an issue with sensory input, where either my nerves are sending the wrong signals, or my brain is interpreting the signals wrong.

Today it really hit me.  I’m still not sure what to do with this information.  I’m probably going to bury it for a while and bring it out to examine at inopportune times (such as during an exam, or when I’m trying to read).  But for now, honestly?  I’m scared.  This is scary.  And I really don’t like it.