Coping with neuro flare-ups

[Suzyq2u]

I seem to be on the (hopefully) downward slope of a neuro
flare-up.

I've had them in the past and they usually just last
about 2 days and I go hide, take a lot of baths and sleep.

This one has been worse, it started Monday night with a side to
side motion in my head (vertigo of sorts? but not spiny just side to side).
Then I started feeling like I was shaking all over, but not visually.
I was sort of okay the next morning, went on like usual but by noon
I was sure I wasn't okay, took my lyrica I usually only take at night....
no help. Called my neuro, but they had no acute appts until MARCH.
So off to the ER I went per my normal doc.

Hospital gave me something to help with the now visible tremors, it helped a bit or at least the shaking, still getting the 'tuning fork' sensation
I normally get, just more-so. The muscle cramps are in every muscle and
my left leg is not functioning quite right (loose? Hard to explain).
I'm extremely weak and lethargic even when -not- taking the
meds they prescribed. I can't keep my eyes open.

So my PCM saw me yesterday and by some miracle was able to get me
into the neuro on Monday. I've seen this neuro for about 18mo now every 6mo. They did some basic testing (brain MRI and EMG's) after the first visit
but nothing like the initial testing they did at the hospital when we were over seas (4.5 yrs ago). Which had some off readings but nothing that could name anything conclusively.
I know neuro diseases often aren't very easy to explain or diagnose but it's so frustrating. PCM said if I'm interested in swapping neuros after my appt on Mon to let him know, he'd gladly put in the referral in hopes of us getting some answers.


Uhm, so back to the question....what do you do to help with your flare-ups?
Today I'm trying to do some of my normal routine...for normalcy's sake!
I have a great hubby and kiddos that have helped tremendously... I hate feeling like I can't "do".

[Darren]

You definitely need to figure out what's going on. If it isn't an obvious diagnosis, it may take finding the right doctor.

One woman was suffering increasing amounts of nerve damage. No doctor could figure out what it was until someone in a lab BY MISTAKE ran a mineral analysis of her blood. The Zinc levels were off the scale. Turned out she was going through too many tubes of denture cream in a month. Her gums were absorbing the zinc from the cream.

If anyone ever needed to think outside of the box, it's your neuro.

[BlueRose]

Believe me I know how you feel. This has been one of my 'bad' weeks. I can walk about 7 steps before I fall. Forget about eating with out making a mess. All I want is sleep with not noise from any one or thing.

Today I am on the up swing by tomorrow I will be able to do more and hopefully by Monday I will be my 'normal' self.

Keeping looking for a neuro that you like and trust. I am lucky, I have a great neuro.

[Suzyq2u]

Well it was slow and go but at least I was going! Of course come monday, I'll be 'fine' and the neuro will wonder what all the fuss was about getting me in so urgently..sigh.

Hope you feel better soon bluerose

[BlueRose]

Hope you get to feeling better as well. Have my fingers cross that the neuro will find out what the cause is and you get the right treatment asap.

[Harry Chickpea]

It might be prudent to keep a food log. Over a few episodes you may find some sort of trigger food. Other external factors could be smells, pesticides, hygiene products like that dental adhesive mentioned above. I'm not suggesting that any of this IS the problem, just that it is an important part of eliminating possibilities and targeting in on possible causes.

[Darren]

What Harry said.

You need to be fanatic about keeping a log or diary if your health is being affected by food or environmental factors. I'd add the weather too.