anyone else "empty headed" and tired?

    • August 22, 2007 at 3:57 pm

      I feel as if I have fluff in my skull and I am so dang tired. I have been doing well residual wise lately and then I start with the wierd poking pains in my head (had them during the first part of my recovery too). They feel like they are just under my scalp or just barely inside my skull and poke at me…kinda like a bee sting. All my MRIs and CTs were perfectly normal with nothing that even raised an eyebrow. Maybe a chiro visit is in order.

      I will take a bit of time off to rest and see how I feel. I know “that time” is coming up and it always wreaks havoc on my residuals so maybe that is it. I refer to it as PMR…Premenstrual Residuals. Sorry if that is TMI.

    • Anonymous
      August 22, 2007 at 4:11 pm

      OK that was funny! I get those monthly PMS residuals too!

      As for the brain fog, yes I get that when I am exhausted and the B vitamins do not help any. By late afternoon I’m pretty useless for much of anything using my brain or fingers. (like typing on a forum – you should see how many corrections I’ve made so far!)

      I don’t have much pain worth speaking of, little shooting zaps every now and then but blessedly numb most of the time. I do get them in my scalp too and sometimes just brushing my hair is painful – which can be a problem since I have refused to cut it and it now reaches below my rear end. It’s vanity, what can I say?

      At any rate I try to follow the advice of my physical therapist – she says my body is trying to get used to new nerve pathways and get used to feeling things again so I need to remind it of different sensations. She suggested I take different textures and rub them over my skin – soft, bristly, slick rubber etc. to get my skin used to the sensations again.

      And just in case this is poor wiring in my brain I also try to associate doing PT and other uncomfortable things with something positive I really like to do. For myself I listen to a book on tape I really like but only when I’m doing something I really don’t like – it’s a mind game but I’m winning.:D

    • Anonymous
      August 23, 2007 at 11:24 am

      Just had to say ……. empty headed and tired, thats my middle name! ๐Ÿ˜ฎ

    • Anonymous
      August 23, 2007 at 11:58 am

      Hmm, empty-headed . . . I use to know what that meant ~ along with a gazillion other things ๐Ÿ˜ฎ The Wizard of Oz; was it the straw man or the tin man??

    • Anonymous
      August 23, 2007 at 2:43 pm

      Winnie the Pooh/Lori, I have those weird things in my head also-today its really bad. I’m dealing with too much stress right now and my resids are going crazy. School started today-good thing, weather is causing toooo much resids to act up along with the pressure causing headaches. I had to go back to bed after the kids got off to school, until 1230, felt a tad better after a warm shower, but the nerves are really going nuts when I try to do anything-even sitting. I had to use my seat in the shower and use my cane when I walk-can’t wait to get these nerves under more control. I agree Rest is needed if the resids are flaring again. I can’t blame PMR for my problems, I’m spayed:rolleyes: hopefully its just from the stress. Take care and get some rest Lori.

    • Anonymous
      August 23, 2007 at 3:06 pm

      Hi Gals, The guys would not understand all this stuff. I am welll over PMS by 20 years–age not spayed…. I am very fluffy in the brain and I find doing crossword puzzles makes the mind work better. Speaking words do not come so fast.
      I had my sural nerve bioposy on Tues. I dont think I will be getting into any knife fights in the next few years???,this slit in the leg hurts too much. Doc was cutting and looking and he says “humm”>I say WHAT. He found an airy little vein and afraid that was it, but he dug (yuk) some more and found the right nerve. It should now be in Omaha or Mayo . I just hope it answers my Neurologist questions and I get my lower legs and feet back. Very tired of this after almost 2 years since onset. Poor me:confused: Thanks for reading……keep going!!! Regina

    • August 23, 2007 at 3:54 pm

      LOL trust me the Pooh theme song does bounce around in my mind when I feel this way…only I cant remember all the words nowadays. I swear my mind has gone south since last year.

      I have noticed that I do better when I regularly do puzzle games. Someone had posted about that and I noticed an improvement once i started. It is definitely something ya gotta keep at.

      The stinging sensations in my head are so bizarre, but are much better today. I didnt get to bed till about 3 am and was up at 6 to get everyone off to school. I was able to nap until 11 though so that helped…and will be going to bed early tonight to catch up and keep resids at a low roar. Stress does suck thats for sure. We are starting a new business (home based thank goodness!!) and I feel fine with it and am excited, but I know darn good and well I am also nervous as heck about the whole thing. *deep breaths* LOl I did go out and buy omega 3 some vitamin c and hylands nerve tonic (and calms forte) to add to my daily supplements ๐Ÿ™‚

      *toast* here’s to fluff!!

    • Anonymous
      August 23, 2007 at 9:31 pm

      Hi all….I seem to have awful bouts of short term memory loss(fluff). It drives me crazy. Probably good for the husband especially after a disagreement…I cannot remember it.

      Regina…May I ask what the nerve biopsy was to determine? My neuro has been relunctant to confirm GBS/CIDP. He pretty much labels it idiopathic peripheral neuropathy. I am being treated with monthly doses of IVIG.
      Over the last 2 years what has been your treatment? Sorry for being nosey.

      I too get those stinging sensations on my head. I thougt I was crazy because every time I mention them to my Dr. he looks at me like how weird is that???? Valerie

    • Anonymous
      August 24, 2007 at 6:16 am

      Hey there, I’m the queen of puzzle games – believe it or not it’s a lesson I learned from my mother who is in her 70s. My mom has always done logic puzzles, crosswords, and hidden object games to keep her mind fresh and trust me you don’t want to get in an arguement with her! I started taking up the challenge last fall when I was having trouble remembering things and having LOTS of trouble seeing. I tend to stick to hidden object games because reading gives me a headache still. There are lots of free ones out there, you can do a search on Google for them, or check out Big Fish Games (mom introduced me to them!!) Also Spintop games. Some of them also have a memory component to them – you remember that solitare game where you can only turn over two cards at a time and you have to remember where the matches are to eliminate them? Anyway, despite the grief I get from my “friends” who claim I just sit around and play computer games all the time – I have actually improved both my vision and my memory. It’s not perfect by any means but I noticed that I don’t have to leave lists ALL OVER the house now, usually one will suffice. :rolleyes:

      My husband has also noticed an improvement in my memory, though he never complained about it (heh heh). I don’t care if my “friends” think it’s stupid, it works for me and I’m getting better so I’ll keep doing it as long as I can still get the free ones. ๐Ÿ˜€

    • Anonymous
      August 24, 2007 at 4:12 pm

      Hi, I dont mind you asking. My sural nerve biopsy is going to join all my other recent tests and mri, where my new Neurologist hopes to find exactly what I do have. I had first been dx with GBS, but once I joined in this forum, I knew it had to be CIDP> My Neuro at that time said we will see, and then he was gone. I bounched around with two other Neuros and now I am with a Neuro who is about 6o miles away.
      Anyway I gimped and fell and broke my ankle before I went to a Dr. That was from Aug 05 to June 06. I then started imediately with IVIG (three) and spent16 days in hosp. in intensive physical therapy and OP> The top of my legs gained all their strenth back and the bottoms stayed the same and drop foot in both. This Dr. wants to get the DX and treatment right. She is leaning hard to IVIG again. I have not had one since May and I am finding my nerves are not working so well–loosing control of bladder and more numbness in my fingers. SO, if I were you I would stay with the IVIG and meds. Oh, I am also on Lyrica 200mg twice a day and Cymbalta 60 mg 2 a day. Cymbalta also helps keep the depression away. I am so gabby, sorry!! Regina

    • Anonymous
      August 25, 2007 at 1:11 am

      I am sorry, what was I saying? DOH:D

    • Anonymous
      August 25, 2007 at 3:45 am

      Oh Rocker, you made me laugh out loud! Thanks ๐Ÿ˜€

    • Anonymous
      August 26, 2007 at 6:21 pm

      Guess I am boring all you regulars. Wont post again. Regina

    • August 26, 2007 at 7:57 pm

      why would ya think that Regina? Did we miss responding to a question you asked? You arent boring us at all!

    • Anonymous
      August 26, 2007 at 11:47 pm

      Hey, Regina don’t stop posting I have more questions. Did you respond well to the 3 IVIG? When do you get the biopsy results? Wll this tell defintely what your illness is?
      How do you treat the foot drop?
      I had 5 IVIG in June, then 3IVIG in july and 1 in Aug. My neuro wants to do 1 a month for the next 6 months. I sure hope this works because I aqm getting really impatient with this whole mess.


    • August 29, 2007 at 10:01 am

      well I have problem remembering words, and also saying wrong words, I cant find words in my head it is all stuck somewhere inside. and in afternoon I’m so tired all the time need to lay down in the middle of the day to have some energy in the afternoon. I have to cook in the evening and that is more enough for me sometimes I just cant. I feel so wast-less.. I don’t understand how my family tolerate me so lazy.

    • August 29, 2007 at 1:22 pm

      I totally understand that part…I KNOW what I am trying to say but getting it out properly is another story. Sometimes I completely hit a block and stop talking…thinking of what or how to say what it is I am wanting to say. All the while my brain is off picking dandelions and I am “thinking” I am trying to find the right word or phrase. My kids try to fill in the blanks becuase I dont realize I am taking so long to finish talking. It feels as if I have a bunch of words that could be right swirling around in my head but none of them make it out of my mouth.

      And to think we are starting a new business which will require me to talk to other business people. Oh my. I guess on “bad” days, my husband will be doing that.

      The good news this month is, aside from feeling empty headed and dealing with a bit of vertigo that involves that wierd eye pressure stuff, and my neck feeling numb and tight, my resids didn’t flare up as nasty as they usually do. No leg or foot pain, very very little weakness, and no vibrating feeling. I am holding onto hope that this is a good sign. We will see next month around this time. It sure has been nice not to feel so crummy that I am in fear of ending up in the hospital or cant function properly.