I FELL and it scares me.

[Carolina]

Dearest Sjogren's Angels,

Today I went to meet the postman at the door, and had an 'attack' of my shaking/jerking, this time in my 'core' and in my legs. 

So I fell rather hard, on my right side.  John (husband) came asking what was wrong, and outside the door, the postman asked if he could help.

I couldn't IMAGINE who that person was (the postman).  I was a bit unclear about the general events surrounding the fall, for a brief moment.

Then I was 'back on track' as my husband advised me on how to stand.   Husband got the mail, and I went on about getting back to my chair.

Nothing broken or torn.....I am very strong, so far, and resist injury.  But now I am quite shaken about my safety when walking in the house, driving the car (eek), and going out in general.

I sent a message to my neurologist.  And I also began research on the MEDICATIONS I take, starting with Gabapentin, which I started last fall, for nerve pain.

The Gabapentin could be causing my problems!  I take 3600 mg for Small Fiber Neuropathy.  I needed that much to stop the worst of the pain.

This is a list of possible Gabapentin side effects that I seem to have:

* dystonia
* local myoclonus
* purpura
* trembling or shaking

Gabapentin may also be interacting the Cymbalta and Benadryl, which I take.   I can't stop the Gabapentin immediately, since I have to taper.

I am feeling very vulnerable now.  I got up to make some lunch and wanted John to be with me, but he was busy on a major project and didn't hear me calling.  So I did everything alone and all was well.

I suppose I should get the walker down from the upstairs bedroom.  Sigh.  Now my arm where i fell is aching a bit.

It's always something and then it's something else.  And then.......

Hugs,  Elaine

[Carebear]

Oh dear, Elaine.  Of course you are frightened by what happened, and what may happen next.  You are wise to return to using the walker for the time being.  Safe is better than sorry.

My personal experience with Gabapentin is limited, however I will pass on something that happened to a dear friend.  She experienced several falls, and it WAS directly traced back to her high dose of that medication.  I was with her once when she took a terrible fall backwards while attempting to stand from the seated position.  I don't mean to upset you, Elaine.

The good news is that since reducing the dosage she has had no more falls.  So you may be onto something.  As you said, slow tapering down is essential.  I sure hope you are able to manage this.  And soon.  Please let us know how you are making out, okay?

[Kathy57]

So sorry, Elaine!

I can imagine how scary this must be for you.  I would investigate the Gabapentin, too.  Hopefully you can get pain relief somewhere else.

Sigh.....................  We out up with so much just trying to survive.

Kathy

[jazzlover]

Very scary .. absolutely could be the gabapentin .. especially at such high doses. Your doctor could try other meds for you.

((((hugs)))))

[Carolina]

So jazzlover and others,

I'm on a reduction program for the Gabapentin. I spent a lot of time back and forth with my neurologist today (he's great at the system email within Duke). I see him on August 9, so we can discuss other meds at that time, for my SFN which is painful, and was the reason for the Gabapentin, and it took a huge dose just to modify some of the pain.

In the meantime I'm being referred to a Spine Clinic to deal with my sciatica.  The PA will call me tomorrow with the results.  That makes me wonder what they are, but clearly the administrative person can't tell me.  So I will find out.

You know, it's all ok, really.  I'm still managing...tho' not driving of course.  And stuck in this heatwave.  Our AC cannot keep up with it by afternoon.  Oh well, First World Problems, right?

Hugs, Elaine

[quietdynamics]

Just the thought of falling has been scary for awhile.. and then sometimes we go 'plop"
So happy you had people around you and did not get hurt.

We have cracking thunder here and are REALLY looking forward to the coming rain.

Hoping Drs/tests can determine cause of your symptoms.. get some  'off the already full plate".

[katie1111]

I took gabapentin years ago for dizziness and fell 3 times, so I stopped it.  This year my dermatologist suggested it for another problem unrelated to Sjogren's - Brachial Radial Puritis.  I told him about the falls, but he said he was starting me on a small dose - 300mg morning and night.  The first night I walked into a wall.  He convinced me to take it for 1 month and then taper off.   I did and found I was very unsteady and the fatigue was worse.  I did sleep better at night.  I have tapered it and am down to 100mg morning and night.  That I can tolerate.  My doctor is surprised that such a small dose is working.  I am hoping to someday stop it all together, but he has agreed that I can adjust the dose as needed.

Katie1111