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Thread: Twitching feeling in my head?...anyone else with cns lupus?

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    Default Twitching feeling in my head?...anyone else with cns lupus?

    Hi all. I have been diagnosed with UCTD w/SLE features thus far as well as Epilepsy. Ive had 3 seizures in my whole life but since the first one have had nystagmus(eye twitching)at random times..sometimes more, sometimes less everyday. It also gets worse when I get tired... However, I have a similar feeling that I get inside my head. It feels like its literally in the middle of my brain...it feels like the same few second twitch that happens with my eyes. I get this less than the nystagmus but it throws me off balance for a second and I have to sit/stand there and gather myself sometimes before I move. I have not been diagnosed with any CNS involvement but was put on neurontin for neuropathy type burning pain in my legs,arms & back of shoulders/neck(didnt work)and have orthostatic hypotension, the epilepsy(which started at 15 yrs old before my disease started appearing slowly),tingling in my feet/legs hands/arms and face, brain fog, raynauds syndrome,dizziness,shakiness,weakness,constant tonal tinnitus & intermittent pulsatile tinnitus,a cramping in my arm that causes my fingers to bend towards my palm etc.

    I guess my question(s) is does anyone have this weird twitching in their head sort of thing?
    And how can I get my rheumy to agree I need to be evaluated for CNS lupus?

    Ive been on Plaquenil for about 2 yrs now and its not worked for my disease at all. Pain pills have not worked either. I need something new! Thanks. -Lupie Britt
    *LadyBug*- Epilepsy Dx: 2003 & UCTD w/SLE features Dx: 2009 SLE/Lupus Dx: May 12th 2011--Current Meds:
    Plaquenil-200mg 2x/day
    Prednisone-7.5mg 1x/day
    Methotrexate- 2.5mg 4 pills 1x/week
    Keppra-750mg 2x/day
    Daily Vitamin-1x/day
    Folic Acid- 1mg 1x/day
    Protonix 40mg 1x/day
    Bentyl- 10mg 4x/day, Miralax- 17g 1x/day
    Vit. D 800IU's 1x/day
    Lyrica- 75mg 1x/day
    Flonase 50mcg 2 sprays each 1x/day

    Wanna know my story, just ask!

    *Lord_Walters_Lady* <3

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    Hey there,

    I get that tingling in my head quite often as well as on my right side in the eye and around my mouth. Like you I have the same in my feet legs etc. I have seizures now and at first I would actually smell burning rubber before my seizures but now, with the meds, I don't have that anymore. What I have is a very strong tingling feeling in my scalp. My head and face get very sensitive to the touch, it begin to tingle really badly and my brain fog get REALLY bad.

    I wish I could tell you how to get your rheumy to get on board but i still can't get mine to give me a diagnosis yet! Good luck to you!
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Hi Britt,

    I have some of these symptoms. I have both SLE and MS, and have this last year been dealing with neurological pain caused by Trigeminal Neuralgia. I also experience periodic nystagmus, and it happens mostly when I am tired, or, oddly enough, when I really try to concentrate on focusing on what I am reading. The more I try to stop it from happening, the more it happens, and the worse it gets.

    I don't know if I get the same exact "twitching in your head" sensation that you do, but I do get something that I would say is very similar. It's hard to explain. It's like a sudden shift of awareness, like a shaking sensation between my ears, but I know that it isn't caused by some external stimulus, like a bump in the road, or walking down a set of stairs.

    It's all really hard to explain, but it sounds much like what you are experiencing. Are you seeing a Neurologist, as well as the Rheumotologist?

    Rob

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    The docs have refused to admit that I have CNS problems, but I think that I do. The first neurologist that I saw in Texas noted that I have nystagmus. The one here in Cal. didn't see it, but my chiropractor noticed it immediately, so go figure! I've had balance issues for a long time, complicated by Meniere's Syndrome.
    Especially when I'm tired, random muscles will twitch and spasm. I also have numbness and tingling in my feet and legs, and sometimes my hands. I have Spasmodic Dysphonia, which is uncontrollable spasms in the vocal cords.
    I've asked all of the docs whether this could all be related to the AI issue. One said yes (excellent rheumy back in Texas). The rest of my docs have all denied that it could all be related, and told me not to worry so much.
    Hugs,
    Marla

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    Default Sounds just like me!

    Hey Rob,

    I totally get what you're saying, that's exactly it...the nystagmus/triggers etc as well as the twitching in my head. I have wondered if im not experiencing nystagmus at the same time as the twitching inside my head and if they have something to do with one another??
    I dont have the Trigeminal Neuralgia but do the neuropathic pain which they think is Peripheral Neuropathy but was negative on a skin biopsy and on 2 different EMG tests. It started out in just my thighs and spread from there to my lower legs/calves & then my arms and again to the backs of my shoulders/neck area. The tingling spread as well from my feet up my legs, my hands up my arms and into my shoulders partially and some in my face. None of this happens every time I have tingling but its definitely evolved over time. I also of course have arthritis in many joints with puffiness, sharp pains in the bones etc. & just recently my toes are so cold that I get random waves of this deep painful ache that starts at the base of the toes on both feet and goes down to the tip of them. It happens in both feet at once its never just one.
    My rheumy is going to have me get an MRI/MRA w/dye done and talk to my neuro about the possibility of another EEG to see if it makes any difference. I do see 2 neurologists actually. One at the hospital where my rheumy diagnosed me with AI disease and a local one ive seen since I was 15 for my epilepsy. The hospital is 3 hrs away so I have drs in both places in case I have an emergency. They are all up to date on all the info/tests etc that I get done so I can work with all of them.
    What Im wondering is how did they distinguish the difference between Lupus related CNS & MS symptoms? How were you diagnosed with both? And what is your treatment for things at present?
    Thanks to all for the posts...hopefully something will give some answers soon. -Lupie Britt
    *LadyBug*- Epilepsy Dx: 2003 & UCTD w/SLE features Dx: 2009 SLE/Lupus Dx: May 12th 2011--Current Meds:
    Plaquenil-200mg 2x/day
    Prednisone-7.5mg 1x/day
    Methotrexate- 2.5mg 4 pills 1x/week
    Keppra-750mg 2x/day
    Daily Vitamin-1x/day
    Folic Acid- 1mg 1x/day
    Protonix 40mg 1x/day
    Bentyl- 10mg 4x/day, Miralax- 17g 1x/day
    Vit. D 800IU's 1x/day
    Lyrica- 75mg 1x/day
    Flonase 50mcg 2 sprays each 1x/day

    Wanna know my story, just ask!

    *Lord_Walters_Lady* <3

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    I was recently diagnosed with CNS Vasculitis from Lupus and get the twitching feelings in my head. I was finally diagnosed after an angiogram, though. In my case the MRIs didn't show enough. I also get odd headaches that are like small pain spots in certain parts of my head.

    I see you'll be getting the MRI done, though, so I hope they are able to get some answers from that for you.

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    Will the MRI show as much as the angio? I had an MRI done probably 2 years ago now and it only showed some slight mastoiditis but nothing was ever really said about that and nothing was done about it...?
    *LadyBug*- Epilepsy Dx: 2003 & UCTD w/SLE features Dx: 2009 SLE/Lupus Dx: May 12th 2011--Current Meds:
    Plaquenil-200mg 2x/day
    Prednisone-7.5mg 1x/day
    Methotrexate- 2.5mg 4 pills 1x/week
    Keppra-750mg 2x/day
    Daily Vitamin-1x/day
    Folic Acid- 1mg 1x/day
    Protonix 40mg 1x/day
    Bentyl- 10mg 4x/day, Miralax- 17g 1x/day
    Vit. D 800IU's 1x/day
    Lyrica- 75mg 1x/day
    Flonase 50mcg 2 sprays each 1x/day

    Wanna know my story, just ask!

    *Lord_Walters_Lady* <3

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    The cold toes! I know this is about the tingling (which I definitely could talk about today!) however I saw something said about the toes getting so cold there was pain. Let me first say that since I was spayed (LOL sounds so much more fun then "had a hysterectomy) I am really hot natured. I don't usually get cold however over the last week my fingers and toes have been getting really cold. My toes, however have become so cold that they hurt. They almost felt like they were on fire from cold. Anyone know what causes that? (I know this is a different topic but since Mommyof1 brought it up seemed like a good place to ask)
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Default cold feet

    You must be experiencing the burning as well as the ice cold feet at the same time. Def know that feeling! It makes the waves of pain feel like they go as deep into the bone as possible & touch the nerve endings..uggh! Peripheral Neuropathy IS damage to the nerves though so it makes sense :/
    *LadyBug*- Epilepsy Dx: 2003 & UCTD w/SLE features Dx: 2009 SLE/Lupus Dx: May 12th 2011--Current Meds:
    Plaquenil-200mg 2x/day
    Prednisone-7.5mg 1x/day
    Methotrexate- 2.5mg 4 pills 1x/week
    Keppra-750mg 2x/day
    Daily Vitamin-1x/day
    Folic Acid- 1mg 1x/day
    Protonix 40mg 1x/day
    Bentyl- 10mg 4x/day, Miralax- 17g 1x/day
    Vit. D 800IU's 1x/day
    Lyrica- 75mg 1x/day
    Flonase 50mcg 2 sprays each 1x/day

    Wanna know my story, just ask!

    *Lord_Walters_Lady* <3

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    Quote Originally Posted by Mommyof1 View Post
    You must be experiencing the burning as well as the ice cold feet at the same time. Def know that feeling! It makes the waves of pain feel like they go as deep into the bone as possible & touch the nerve endings..uggh! Peripheral Neuropathy IS damage to the nerves though so it makes sense :/
    Exactly!!!! Oh this is lovely! Let's add another part of my body damaged! LOL well at least I have CNS so maybe pretty soon I won't remember that it hurts (sorry I know it isn't funny but sometimes all you can do is laugh)
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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