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How are you feeling D'awesome?

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Posted 6/7/2008 3:33 AM (GMT 0)
Hope you are doing well and your headache has eased up :)
Posted 6/7/2008 9:58 AM (GMT 0)
Nope. Not yet...
Posted 6/7/2008 12:06 PM (GMT 0)
I am sorry.... Does the doc reccomend some type of medication? I hope you feel better today :)
Posted 6/7/2008 8:41 PM (GMT 0)
Not yet, will know more by Monday. Waiting. :)
Posted 6/7/2008 9:53 PM (GMT 0)
Hey D- If you've had the headache since the LP you may need to go get a blood patch. I'm sure your doc will tell you, but ask directly if it hasn't come up yet. Hate to have you suffer through the weekend. I ended up needing the patch. Went into the ER day after the LP because of the severe headache. I actually laid across chairs in the waiting area because any amount of 'upright' was excruciating. Is yours worse if you're up? Anyway- the patch was absolutely no problem and immediate relief. Within 20 minutes. Amazing. Hope you feel better soon.
Posted 6/7/2008 10:34 PM (GMT 0)
That's exactly what I'm figuring is gonna have to happen but I hate to make an ER visit for it, our ER is notoriously slow and long waiting... for such a simple procedure... I think the neuro may do it in his office monday... but yes, I'm calling first thing monday... in the meantime I've emailed... if he answers and says go to the ER, I'll go... but most definitely, it's much worst the minute I'm upright or moving... I can tolerate a little time up but within in a short while it's pounding again and for some reason this just is wearing me really thin.
Posted 6/10/2008 12:51 AM (GMT 0)
Neuro's office called today and they ordered a blood patch for the morning. Going back to the Outpatient at the hospital and an anesthesiologist will do it at 9:30am... nurse said the doc says it sounds like I'm leaking internally so this has to happen for it to seal up... confound it... down another day tomorrow and then hoping to be rid of this headache and back to normal on Wednesday.
Posted 6/10/2008 1:09 AM (GMT 0)
I am sorry :( Hope you feel better very soon......couldn't he have just sent you to the ER????
Posted 6/10/2008 7:17 AM (GMT 0)
I am sorry to hear about your headache D'Awesome. This happened to me when I had an epidural when giving birth to my first son. I feel for you. I hope all goes well and you will be feeling better soon.


Posted 6/10/2008 5:17 PM (GMT 0)
Wasted the morning in the outpatient with the same set of nurses from last week only to have the Anesthesiologist come and talk to me to tell me I didn't "look sick enough to need this... that it's an invasive procedure & he'd rather I ride this out" !!! I agreed with him that it was letting up a little bit but it was still there and now the nausea set in last night... I thought I was gonna be mighty sick when I was trying to go to sleep... but it subsided... he said that's kinda normal too... he just said I didn't look like I was hurting that bad.

I had to tell him (and my sister confirmed it) that I don't show pain, I have a very high (make that extremely high) tolerance for pain- all pain, [part of my childhood with a multi-abusive father, you learn early on how to ignore & put aside 'PAIN'] and that even with acute viral meningitis I did not come into the ER weepy, howling in pain as he would expect me to be with this kind of headache... I can function in pain. I just want relief and I understood a blood patch would stop this seepage.

He agreed but with the upper respiratory infection I contracted (THERE at the hospital) and the length of time since the LP, he would suggest I go home to bedrest today, and light duty the rest of the week and hopefully it will have subsided by then. If not contact my neuro. I agreed. Felt foolish being there and left with my sister.

C'est la vie. Dang. Hopefully the prayers will work faster! :)

Posted 6/11/2008 3:26 AM (GMT 0)
Hope you feel better soon. How rotten to have to deal with that
Carolyn
Posted 6/11/2008 12:19 PM (GMT 0)
Thanks Carolyn, this was the first time I ever really listened and did as I was told and it still all happened like it did before. So guess what my conclusion is? tongue   I'm not very good at the whole stay in bed thing, if and when the time comes that I am more there than not, I'll add tranquilizers to my regimen becos it just drives me crazier to be there.

It has lightened up this morning, now it's just pressure and the weird sensation that my head really isn't my own head but that's easy to cope with since it's similar to bouts of vertigo. Thanks for all the advice... me and my neuro will talk about it and next time we'll pre-empt the "leaking" and go from there. In the meantime, I'm back to as normal as normal gets... :-)

Posted 6/11/2008 1:39 PM (GMT 0)

Deb,

It could be that the stress of having the test done has caused some flaring of your MS symptoms.  This can be a small flare or what is commonly called a pseudo-flare.  This just means that you are not having a true flare or worsening of your MS but just a temporary increase in already present symptoms.  It does absolutely call for rest.  Anytime there is an increase is symptoms, it is a reminder that you must rest. 

Please take good care and feel better soon.

Posted 6/12/2008 1:48 AM (GMT 0)
Thanks Gretchen, I have much to adjust to... for now, it feels good to be back to semi-normal and I will go to bed early tonight for the added rest. :) I hear ya... I really do. And I'll pay close attention.

I was already thinking it kinda triggered the "mini flare" "psuedo flare" thing... with me, though I'm still not real sure what's the full fledged flare. It's felt like the past couple years have been one giant flare though... it just sorta never stops with a bunch of highs and lows.

Posted 6/12/2008 2:23 AM (GMT 0)
I hear that a lot, that it is hard to know what is new or a flare and what is a residual.  Your description of one giant flare with ups and downs - that seems like residuals.  I know that I have not been "normal" since my diagnosis.  I don't get back to a normal baseline of symptoms.  I have a new normal.  It is very rare to get back to a normal baseline between flares.  It is more typical that after a flare, you are left with a bunch of new permanent symptoms.  You adjust to those and move on until it happens again, after which you adjust again.

I have had three flares since being diagnosed.  I have not had any problems knowing when I am flaring.  I was hospitalized once for four days.  My flares hit really hard and there is absolutely no mistaking them.  I wake up and just know that there is something big going on.  The rest of the time I just deal with normal ups and downs of my symptoms.  I have good days and I have not so good days. 

It seems to take some people time to figure out when they are flaring and when they are just having a bad residual day.  You will get there too.

Posted 6/12/2008 12:04 PM (GMT 0)
Thank you Gretchen, I appreciate that input alot because sometimes it feels really weird not knowing for sure. Combined with the high tolerance to function under pain or weird moments and it just doesn't make sense. But I can recall the couple month breaks in the past couple years where things were calm in my body and all the little stuff just wasn't marching all the time. It was semi-normal... then the new stuff showed up and we started a whole new "residual" as you put it. That makes much more sense.

Again the big picture, looking back it all makes sense now, and it's good not to feel "crazy" for knowing something was wrong now, and being assured by everyone around me that "everyone goes thru those things, don't make such a big thing out of it" all that time, that now I have the answer and they just look at me in disbelief like they just can't believe it. Oh well. Believe it. It's not the end of the world. At least it's an answer... and it's a heck of a lot of new (albeit unpleasant sometimes) experiences... though gotta admit when things calm down I can laugh at myself alot over most of this... and I will once my head is back to being mine. tongue Thanks!

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