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Sorry, need advice, starting to freak me out

AnonymousUserAAnonymousUser Posts: 49,622
edited 06/11/2012 - 7:32 AM in Chronic Pain
I am having troubles today, it comes and goes. Right now I am semi-ok. It started on my walk about 3 hours after my morning meds. About a mile in, I suddenly felt drunk, and had to concentrate not to fall over or to look drunk. if i walked regular, I seemed to lean and move left, it took all my energy and concentration to get home. Once home, I called my surgeon and my PM, the surgeon to find out if it was from the pressure i been feeling in my back up to my head since going off ibup. they say take tylenol, I tell them no pain... nothing. My Pm's nurse says doc says it's not the neurontin, stop taking it and see if it goes away.

Now, I also recently noticed a micro movement in my head (not constantly) and now my upper body when i sit. Anyone else have this

thanks

edit: sorry i fixed the typos i think
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Comments

  • Hi Kat...I'm so sorry you're in distress. You are such a support to people in trouble, you should absolutely NOT feel bad about asking for a little support in return! Just wish I had a clue what your problem might be. With your new symptom of twitching, I don't blame you for being somewhat freaked out. I guess if I were in your situation I'd wait to see what morning brings (unless you get dramatically worse, of course) and then call your PM doctor again and see what he suggests next. It sounds like he is guessing too at this point. :/

    Hopefully, there will be somebody here on the board who recognizes your symptoms. Know that I'm thinking about you and hoping this is some oddity that will pass without consequence! Hugs...>:D<
    Linda

    2009 Foraminotomy C6-72010 PLIF L4-S1Multi RFA's, cervical inj, lumbar injLaminectomy L3-4 and fusion w/internal fixation T10-L4 July 17Fusion C2-C5 yet to be scheduled
  • thanks inch, my daughter starting to worry a bit too, but I've already told her I'm gonna wait till morning (in fact the smae thing you said. Still having the movement, and a little trouble talking, looks like my typing is ok right now, but I think it's all connected somehow ujust don't know how.
  • I am guessing, and it's just a guess....it may be related to the neuronton.
    My Neurologist insisted i try Lyrica(something like neuronton) and I had an awful reaction to it. My balance was off, I had trouble talking and my vision was blurred. My reaction was severe where as yours are mild but perhaps it's the meds.
    It takes a few days for meds to get out of your body so give it a few days and you will know.
    Good luck...
    Hugsssssss
    Patsy W
  • Im sory your meds are doing this to you . isnt that the one that was working for you iwish i could help you more buive never been on that but lyica done that to me dont like the stuff . i was hoping to get put on neuoratin after my fusion . hope you find out soon so you can feel better . and about the typing please just look at mine shabby but sats what needs to be said sooo itll be alright dont even worry about it. 8} is this the way you felt .renee
  • neurontin can cause dizziness and lack of coordination.
    maybe cutting back a bit on dose will help. This is very important. Neurontin must be stopped slowly. i hope your dr, told you that!
    i know neurontin and it's side effects.
    it is a powerful anti seizure drug that must be started or stopped gradually. if dr. didn't put you on it gradually that in itself might be the problem.
    what dose are you on. did he start gradually? If when coming of the drug you get increased twitching and pain, you are coming off too quickly.
    WHAT DOSE ARE YOU ON. DID YOU START GRADUALLY. DID YOU STOP GRADUALLY.
    I know this stuff from experience so trust me. My Dr didn't know side effects either. if you dont improve quick id go to emergency room to find a dr. that knows side effects of neurontin.
    i'm going to PM you on this stuff to make sure you saw it.
    boy we both hit the ropes at the same time. i need you back on the team. talk to you later....pete



    The information provided by members of Spine-Health should never be considered as formal medical advice. It is recommendations based on member's personal experiences only. This can vary from person to person, so do not take comments as medical rules. Edited by moderator Paulgla
  • Pete PM'd me about this post, and I don't even remember making it.... weird day for me yesterday... but I'm feeling much better today. I am thinking now it was a spike in my blood pressure, which I will have checked today. Thanks for the well-wishes, and sorry that the OP really was unanswerable....

    >:D<
  • dilaurodilauro ConnecticutPosts: 10,060
    That must have been a bit scary for you. There is always a fine line with Chronic Pain patients as to when to make the call to the doctors or just to wait it out.
    I am glad you are doing better, but this is a topic you should discuss the next time you see your doctor
    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Thanks, Eve and PapaRon! Yes, I'm feeling much better, but still finding that my spell check (comes with Firefox, my browser) is putting red lines under SO many words! (ok, the jig is up, I use spell check lol) All jokes aside, I'm usually an accurate typist, but wow, this stinks, I have to go back and correct all these words, I mean you don't spell "typist" "typest" sigh. Takes so much longer to finish my rants this way!

    But, yes, Eve, I'm back... I took my month and looked within myself, forcing myself to be still and accept my situation, but not give up hope. How are you doing?? Has your vibrating leg(s) calmed down? I barely notice the vibration anymore, guess I'm used to it! Do you have High Blood Pressure as well?

    I thought the problem yesterday could be that, since, I think I mentioned it in my last post, I had a very full feeling in my head. But I did take my first dose at 2 am after over 12 hour "break", and so far so good (except the typing, and the fogginess, of course). I'm going to take a shorter walk today, just in case (I go around a 2 mile block, with no shortcuts to be found from any area on the way around back to my apartment).

    Can I ask why you can no longer take Neurontin? I have an extreme fear (dear God, I just typed bear, lol) that the memory problems caused by the drug will keep me from getting the grades I need to get into the nursing program, but I'll cross that path when I come to it, I suppose.

    PapaRon - I think my daughter was more scared than me, but of course I was not all there most of the time, and when I was, I felt so drunk that I was downright silly. 8} But, yes, thank God that feeling is gone!

    Thanks again for your support, I really appreciate it, no matter how little sense I think I made half the day!

    >:D<
  • I think I read that you just recently began taking neurontin, at 300 mg 4 x day? Am I remembering correctly? That surprises me because it is normally only 3 x day, and they start you on 300 mg each dose and go up from there. I wonder if the extra dose you are taking could be causing the dizziness/brain fog. Or it very well could be a blood pressure thing, or sugar. Even though you are feeling better today, I do think you should call your doctor to discuss it. If the doctor who prescribed this doesn't think you need to come in, perhaps a visit to your family doc would be wise. Especially if it happens again. Sorry you had a bad day.

    Cindy
    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
  • :H Happy you're feeling better today. :? Are you taking 300 mg of Neurotin 4x a day OR 75 mg 4x a day? I'm only on 150 mg of Lyrica a day and I have side effects -- blurred vision, hard to concentrate on anything for too long without getting a sick headache AND I go to type words and can't think of how to spell them (you're not alone there!), heat sensitive also at times. BUT, my sciatic pain is kept under control with the Lyrica so it's a trade off -- pain or fuzzy head?

    Another thing I thought of about your episode yesterday while walking -- maybe you were dehydrated?! That could cause the symptoms you were talking about -- not sure about the twitching but everything else you felt. I'm trying to drink more -- you don't realize that you dehydrated, especially, if what you're drinking is contains caffeine -- just a thought.

    Take care,

    Judy
  • I'm glad to hear from you. You had me worried. Yeah, that Neurontin can do weird things to you. I never did tolerate more than 200mg a day because it had me feeling disconnected and on autopilot if you know what I mean. I got off it in a New York minute and went on to something else. It works, it's cheap, but it's not for me. Anyway, I'm happy you're okay.
  • Thanks for all your well wishes. Now an "add on":

    I went to get a nerve conduction study yesterday for my sleeping hands, and I just now got home, over 24 hours later. I decided I should aske them to take my BP since I was convince that was causing my "bouts". It was 200-something over 90-something!! @)

    So, since it was almost past 5 I went to the ER, and when they asked for my history, I told them the weird stuff that was happening to me (was happening on a much smaller scale around the time I went to the NS), and they decided the HBP was due to worry over the wierd stuff, and said it most likely had nothing to do with the neurontin... :O

    They thought it may have been an TIA, so they "take off" on this, and started running scans on my brain. The first was just an angio, and while I was waiting for what I thought was the only test they would run, they took me up to the "Clinical Decision Unit"... And we wait... during this time I discovered they want to keep me overnight, and run a CT and Electrocardiogram. ~X(

    Of course just being there gives them the right to poke you and prod you all night, so even my lack of sleep the night before didn't help me with falling asleep there. :<

    I get the CT: unremarkable
    I get the ECG: perfect
    THEN the doctor wants to do an MRI... She was told by the CT guy I have no metal implants in my ears (who knows what they used way back in HS for Stapendectomies). This will be a happy day for my NS, who has wanted to stick me in one of those for 5 years! Who knew all they needed to do was a ct on my head to find out, why didn't they do it?

    But I digress... longer story shorter, no TIA, I am told if it happens again go to the ER immediately (err, what incentive did they give me, 24 hours of pure hell?) And I'm thinking, well what about my BP, which was up and down the entire time. I'm convinced it's the Neurontin, but only time will tell I suppose.

    Well, I doubt I will be posting much more than this today.. I'm sooo tired Goodnight all <3
  • i hope you get this sorted out soon! :D being unsure about your meds is no fun!! be careful if you get that drunk feeling again.. :? the ER is there for emergencies!! take care of yourself! =D> Jenny :)
  • I'm convinced the neurontin is causing your high blood pressure too. I was on neurontin for a short time because I got edema from it, and so they switched me to lyrica and I got worse edema. I never saw feet and ankles swell the big ever in my life and I've had sprained ankles before where they swelled pretty big then. They even cracked and bled in places. Anyway, I've always had low/normal blood pressure until I started taking these two meds and it's been high ever since. I also still get periodic edema. So these side effects didn't go away for me even long after I stopped taking neurontin and lyrica, just improved some but I am taking lisinopril for high blood pressure and hydrochlorathiazide (a diuretic) for edema now. Pisses me off that I have to take even more meds because of side effects from meds that were supposed to help me.
  • Thanks for caring Meydey! I think my daughter almost had a heart attack when she came home at 9:30pm that night and I was still not home. (her twin brother, however, I don't even think he noticed I wasn't there lol) I left her several messages, but all she did was look at caller ID and called me back right away, freaking.

    It's nice to have people in your life that care enough to worry, but at the same time, you hate to have them worry!

    Hugs!

    >:D<
  • Judy, thanks for your wishes! I'm currently taking 300 4x per day. You mentioned heat sensitivity, unfortunately after having been to Sea World in San Diego while I was pregnant 24 years ago, where I got "heatstroke", I have been sensitive to heat ever since.

    Now, your dehydration theory could have some meat to it, I drink A LOT of caffeinated drinks... in fact most of the time instead of drinking water, I drink green tea. I really should take better care of myself there.

    Thanks again!

    >:D<
  • Donna, I had this all typed out, and hit backspace, which on this stupid computer goes back a page, grr. So to the point: Sorry that taking meds begot meds in your case!

    What I meant to say was, I think the neurontin may have caused the sudden roller-coaster-like up and down of my HBP, since I already have HBP. I will have to see what my PM wants me to do, and hopefully my PCP will put me on some different HBP meds today when I see him!

    I also want to say thanks to Patsy and Renee for responding to the OP, that you care enough to do so truly means a lot!

    Take care, and best wishes!

    >:D<
  • OK, sorry to keep adding to this thread, but this has me SO confused.

    Ok, I go in today for my post-admission followup. (posted all that junk up a ways) My "regular" doctor is not in, so I see a nurse practitioner. She asks me to repeat the ENTIRE debacle again, which I do. ~X(

    Then she tells me to talk to my PM ASAP, that most likely the whole thing is Neurontin related. @) Then, just on the by and by, I tell her everything smells like dirt today. She said "oh, ya, it says in your ct scan that you have a sinus infection" and she gives me a prescription for a massive dose of Augmentin (850mg to be taken 3x daily)... :jawdrop:

    Correct me if I'm wrong but that dosage is usually reserved for massive respiratory infections, which I am fairly certain can cause DIZZINESS! I am willing to be humbled by anyone with any more info than I have, but at this point I'm thinking... couldn't this whole thing have been started because of this infection? :?

    **begin rant**
    Maybe the Neurontin contributed to the overall "episode", but why didn't they mention the infection when I was in the hospital? Can't they see past the diagnosis they are expecting?? My gawd, Dr. House woulda figured it out after the first CT/Angio!
    **end rant**

    That's all, I'm done with this post lol :p

    >:D<
  • I know what's happening to you is a "nightmare!" to say the least, but I had to laugh at your Dr. House comment. I'm a "House" tv fan and I often tell Keith (my honey) -- where is a Dr. House when you need one!!??

    Unbelievable that the ER doc did not tell you that you had an sinus infection after seeing it on your cat scan. Believe me, walking in the heat with a sinus infection can cause you a lot of weird feelings. I suffer with sinus infections too (because the sciatica isn't enough on its own)and I had one a few weeks back that had my head spinning and I kept telling my doc that my head felt "swimmy". If it goes into your ears (per my EAR NOSE AND THROAT Doc) it will cause the spinning. I was in bed for a week trying to get over that bout.

    With everything going on with your health and the medications you're taking (by the way I think that's an awful high dose of neurotin 1200 mg a day) no wonder you feel zoned out! My PCP has given me augmentin before for sinus infections -- You may actually start to feel a little better after a few days of taking it. Sinus infections are NASTY and can make you feel that dog dookie!

    I'm taking keflex right now for an infection at the incision site of my foot surgery back in October. Kat, I'm telling you -- maybe we need to hope that aliens will come in the middle of the night --bring us back to their spaceship and have their way with us -- I'd go for it if it'd do some good (LOL).

    Sister, hang in there, I'm cheering for your recovery and good health,

    Judy
  • Hi!
    To me it seems to be a case of vertigo.



    The information provided by members of Spine-Health should never be considered as formal medical advice. It is recommendations based on member's personal experiences only. This can vary from person to person, so do not take comments as medical rules. Edited by moderator Paulgla
  • Anyone look at your kidneys concerning HBP? They make
    renin. You may ask about
    angiotensin-converting enzyme inhibitor
    This should cause it to fall for you.
    Wierd how the conversion occurs in the lungs.
    At the very least, have them check your Aldosterone levels. That controls BP, and your chemicals
    potassium, chloride, and bicarbonate.
    Had to quit Neurontin. Couldn't communicate with my left arm, and never knew if I was going to fall.
    2000 a day got me pretty hostile as well. Made it worse. I could not have learned Med. Term or Biol, were I on that stuff at the time.
    Hope all goes well. Hang in there.
  • Neurotin is bad stuff......... My dr had me on 3600 mg a day at one time.. 600mg x 6.......... Once i got to a PM she quickly lowered it to a total of 600mg a day... i was soooooooooo high most days that i was literally floating inches off the floor - or so it felt so-- this was with a regiment of topamax,elavil and cymbalta. NEVER NEVER again.......
  • Can it be a form of dizziness? Are you having problems reading? Turning your head and so? It could be that you are really tense, so that the balance organ doesn't work. I had it for two years, sometimes more sometimes less. Like I was on a boat all the time. I did some stretching, relaxation, avoided the computer and lay on my Fakirmat. The last two things helped me the most!!!

    Glad I found some sort of solution!! I can sometimes feel this dizziness again if I been in too much stress or forgot to use the Fakirmat (the neckpillow that is).....

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