why doi constantly feel like my head don't belong on my body,
It drives me crazy and never get a answer, it feels like I have been drinking all night long when I haven't, I believe this feeling is coming from the neck, causes headaches and dizzy feeling,I have had sle for 12 years now and take mirohphenlate,Quinn atorvastain wafrin so many issues at the moment. I have had to go part time at work as I have flear up after flare up. I think I would win gold for England insleeping. Just feel so down at the moment anyone else feel like this? Thanks kelly
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lennox
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Hey Lennox. I have that problem some days. I call it a hangover without the drink! It starts in the base of the neck and resonates through both sides of my head. Some days i just go back to bed and sleep and when I wake up I feel better. Don't let it get you down. One day at a time. But If your body is telling you to rest then do rest x
Sorry you are feeling so rubbish Kelly, yes, I have had this for years, I don't even drink, but this is one of the reasons I don't as it's a constant reminder of feeling like crap after a night out! Don't really have an answer for you, but just wanted you too know your not alone, sometimes that helps, just knowing someone else knows that horrible feeling Hope your feeling better soon x
Hi Kelly. Sorry you've been feeling so bad. I know that "drunk" feeling you're talking about. I used to get that all the time. I would even slur sometimes and lose my balance as if I were drinking. I know that feeling of it coming from the neck. In my case it feels like my TIGHT neck and shoulder muscles are what might be causing this. I take Flexeril (a muscle relaxant) at night only for 2 nights in a row. It really works for me. It relaxes my tight muscles and takes away that drunk feeling. It usually is gone for a month before all that tightness returns and I have to take another pill or two. Along with the tightness also came horrendous daily headaches. I was diagnosed with lupus 4 years ago. I just started hydroxychloroquine/ plaquenil a couple of months ago. It really seems to help with pain and headaches. I used to feel sick all the time, every day. Since starting plaquenil I have more good days than bad which I thought would never happen again. I hope this info helps you in some way. It's hard not to feel down when you're not feeling well most of the time and it 's one thing after another. I used to go through those periods frequently. What helped me tremendously was knowing that I was not going through this alone after reading everybody else's problems with lupus. I am so grateful for online support groups because we're all going through this together and we understand one another. Take care.
Thanks everyone for ur comment nice to know it's not just me and I'm not going mad, I just don't understand why the doctors do t seem to understand this when I'm telling them I have seen Nuro docs and had loads MRI scans in case it was mini strokes, it's defo a pressure thing I had a full body scan and found a sheath tumour on my nerve ending just waiting on test to come back to see if I have fn1 don't even no what that is just wish this drunk feeling would go way
You are not going mad ... you are a bit 'wonky'. HA!
Are you taking your BP (blood pressure)? Common symptom of low BP is wonky aka your drunk feeling. Best to check your BP when ever you are 'off' just in case of an issue (hyper or hypo). Then report to your docs immediately if not proper.
Endocrine problems should be considered as well as neurologic problems.
Adrenal crisis can and often does happen. Be careful.
Could try an adrenal friendly boosting diet intake. Google it. Loads of recipes. Worth a try. As a SLE patient you experience constant body stress whether you perceive it or not. Adrenal glands take a beating. Take care of them as best as is possible.
Be certain to have docs recheck your Rxs dose levels (through blood work). Sometimes minor dose changes are necessary. Best to avoid over or under dosing.
Nouska, good call on blood pressure issues. I have had same symptoms, but when I am not fainting (lol) my blood pressure is high. So probably neurological. Docs here treat low bp with salt taabs but since my kidneys are unhappy because of lupus can't do that. But gradually symptoms got better. See my other posts.
Thanks Hun my blood pressure is normally really good I believe this feeling is coming from
My neck when I look left or down I go dizzy and all my muscles feels tight, they said they will look in to phsyo for me. If I move my head to fast I go dizzy just the most horrible feeling. It's good to know I'm not alone but just want my normal life back. They way I use to be find it so hard to deal with the fact that lupus has hold of me and I don't have hold of lupus no more.
Wow Kelly and others, I have had lupus for 40 years and that weird dizzyiness emanating from neck thing for 13 years, probably longer but it got really bad along with other neuro symptoms at that time. I thought it was just me! No lupus doctors have said that it is lupus related, including lupus specialist at Johns Hopkins (supposedly best hospital in the world, or at least they think so;))yet here you all have described this to a T. At the time it started I worked for Hopkins in a different area (international studies) and they sent me to about four different specialists who were doing various research. Except for one, who correctly diagnosed me with benign positional vertigo which doesn't have anything to do with the lupus, the others conveniently treated me for what ever they specialized in. Diagnosed with a Parkinson's like syndrome. Then moved from Baltimore down to DC area to near my sister, diagnosed with Parkison's at Georgetown Hospital by famous PD specialist. Went to NIH (National Institutes of Health) and they studied these symptoms. One doctor was very helpful (my condition seemed to fit conveniently into his studies) and said yes you have Neuro-mediated Hypotension,another dismissed me saying, you don't have Parkinson's (but not interested in my PD like symptoms) the other said my tremors were psycogenic (didn't fit his study). But no one addressed the weird neck thing. The lesson I am learning is, don't go to research institutionor hospital for medical treatment, unless you wish to be part of a study. (of course now I am at a teachign hospital but my lupus doc doesn't do research).
Oh forgot to ask, can you look up at soemthing without getting dizzy? That is one of my symptoms, cannot look up at things higher than eyelevel for more than maybe 30 sseconds. ??
Thank you for your reply and I am gonna take this up with my doctors at St toms London, as they clearly need to look into this more deeply and the reply to your question is no I can't look up at things longer than 30 seconds with out feeling dizzy. And when it's at it's worst I can't be beside any thing moving if I'm standing still, ie stuck in traffic and the car besides you moves slowly omg I panic makes me feel sick, can't go on anything that goes round and round, I also find when I'm look left or right I go dizzy. I'm so glad I'm not alone with this infect I'm having a hard time with this at the moment, along with joint aches and pains, I have a nerve sheave Toumor on my spine which they are investigating as they don't know why it has grown. But please try pushing this feeling all you can with all ur doctors as the more of us complain they will surly have to take notic xxxxx thank you once again Kelly
Kelly I the same problems with moving stuff. Certain types of movies are off limits to me since I threw up trying to watch the Star Trek movie. Also hand held home movies do it to me too. Which part of your spine or neck is this nerve sheath problem? I My sister doesn't have these issues but about 12 years ago she had soemthing called a schwannoma taken off of her spine (nerve sheath thingy), benign. what a mystery. Let's all try to get to the bottom of this. Unfortunatley I have to put the neck thing on hold while I get my liver sorted out (oy vey, I never thought I'd write that sentence, )
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Hope your feeling better soon 
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