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Posted 4/11/2009 1:26 AM (GMT 0)
Hey everyone! Hope you all had a good week! Since Tuesday I have had this happening off and on.  I will be sitting or laying down and with out any warning I get extremly dizzy and feel really drunk. Sometimes it start with what feels like pressure building in my head and then get really dizzy. Sometimes I get nausaus. Last night it woke me up. This has been happening more and more. On Tuesday it probably happened 4 times and today it probably happend around 15 times. The feeling will last anywhere from a few minutes to 10 minutes. I guess when it starts happening, I start to get panicked because it really scares me which causes me to feel like I am gonna have a panic attack. Has this happened to anyone? Do you know what causes it? I havent changed any medications. Is there anything I can do to make it stop?
Posted 4/11/2009 2:07 AM (GMT 0)
I think you should report this to your doctor asap.  Have you had your blood pressure checked lately? 
Posted 4/11/2009 2:28 AM (GMT 0)
Hey Judy! Last Friday I had my blood pressure checked and it was 120/83. Thats usually around what it always is, I have been really stressed out at work. I work in accounting and I was matching up the credit card totals for the day with what the bank says and for some reason we had 3 branches missing all their C.C sales. That happened on Wed and I just got it straitened out today. Then we are switching to office 2007, updating and complelty changing a program I use almost all day, and fixing problems that employes have caused...yeah, i have been really stressed. 
Posted 4/11/2009 2:46 AM (GMT 0)
Hi Amy! Before I knew what was possibly going on with me and before I was treated, I got this ALL the time. If felt like my head was spinning and would happen whether I sat or stood, or layed down. I would get these episodes at least twice a day. A couple of times while driving and that was really scary. I have not got this since I started the Plaquenil so I know its related somehow. Docs tried to say it was vertigo, then panic attacks, then circulation problems but none of those reasons panned out. I'm glad it doesn't happen anymore but I still get really curious about it.
Posted 4/11/2009 2:44 PM (GMT 0)
Have you had your ears checked recently?  I have been experiencing some dizzyness myself and noticed my ears feeling a little full.  I went to the Dr. and he noticed that my ear drums were "sucked it" from the pressure that was being caused in my head.  I'm constantly blowing my nose with clear mucus coming out.  I've been on ear drops, nasal spray and Sudafed for 2 days now, and some of those symptoms are starting to go away. 
Posted 4/11/2009 3:40 PM (GMT 0)

Hi Des! Yes, the scarriest time for me is when i am driving. i have a 40 minute drive from work and it happened 2 times on the drive home yesterday. There was horrible weather here and I was too scared to pull over and just wanted to get home and out of the weather. It looked like tornados where gonna be everywhere! Do you think smoking has something to do with it...I might pay extra close attention today and see when the "episodes" happen.

Hey Tammy, I have not had my ears checked. I actually don't think I have ever had them checked. I don't have a runny nose or anything. When I do sneeze or something and then blow my nose, there is always blood in the tissue but I have not had a "runny" bloody nose since Jan or Feb.

Thanks for the responses! :)

Posted 4/11/2009 5:13 PM (GMT 0)
hi amy,

i have this problem when i am really stressed . . . i have a problem with syncope (irregular heart beat) which makes my blood pressure plummet and i have actually passed out and had seizures because of it. You should really report this to your doctor and have it checked out. You don't want to take any chances, especially while you are driving!

hoping you get an answer that will help you!

anne
Posted 4/12/2009 12:38 AM (GMT 0)

Hi Amy,

I don't post here but your thread touched a nerve.  I am so very sorry!!  This is a terrible feeling!  I don't have any answers and you have gotten some very good advise.  I would second the motion on having those ears checked.  You may want to google benign positional vertigo.....although this may be way off. 

I live with vertigo.  I have had if for 3 years now.  I just wanted to say that ginger is genius for managing the nausea that comes with that.  Ginger will not cure or even lessen the vertigo or dizzy feeling, but it will settle your tummy.  You can take it in a variety of ways.  You can get some ginger root and put some in hot water or tea...let it steep for ten minutes or so then drink (slice it thin).  You can also get ginger candy from lots of health food stores.  It really does help the tummy!!  I carry it with me where ever I go. 

I wish you the best of luck in finding an answer to this symptom.  It is an awful thing to live with. 

Posted 4/12/2009 1:44 AM (GMT 0)
Hello Amy
I had the same thing with me, standing, sitting, laying, even in the the car I was having problems I told my lupus Derm. she told me to talk to my pcp. My blood pressure was good everytime I went to see him and I was on diovan for blood pressure so I didn't think it would be my blood pressure. Well he put me on norvasc blood pressure med. I also think it can be due to stress that I have. Now I'm on 2 of them, haven't had any problems for 3 months. I would talk to your doc. Good Luck
Debbie
Posted 4/12/2009 10:31 PM (GMT 0)
I had that a couple months ago, and get it back every now and then they told me it was vertigo. Clartin D works if you can take it. I had to take it even though my doctor didn't want me to I couldnt even stand it was bad. I also had fluid in my ear.

 

Posted 4/13/2009 4:53 PM (GMT 0)
Hey Everyone! Thank you for all your advice. Today I am going to make an apt with my PCP. This is so strange and I can't seem to find anything that triggers it. It just pops up out of know where. Today it happened while I was in a meeting and my coworkers noticed something was wrong and asked if I was okay. They said I got really pale and said I glazed over. Someone went and got me water and in a few minutes I was back to myself. I really do appreciate everyones advice, If you have fluid in your ears, could it hurt? I noticed yesterday i layed down and was laying on my right side and when I would lay my right ear on my pillow it would hurt for a few minutes and then the pain would go away. Of course me being curious, I would lift up my head again and lay it back down and it would hurt for a few minutes adn then go away/..I did this several times, with the same results.

When I get home today, I will google Vertigo. Not sure what it is but since there was several of you mentioning it, i am curious as too what it is. Well...gotta get back to work! Thanks again

Posted 4/13/2009 6:30 PM (GMT 0)

Hi! Amy,

What you describe is exactly how I feel when I am flaring badly, and the usual before I started neurontin and plaquenil. I have CNS lupus, and the ataxia and numbness and tingling is bad enough, but often the severity of my misery was/is connected to scary high blood pressure. I vote with calling your dr. right away.

suetoo

Posted 4/15/2009 3:23 PM (GMT 0)
Hi Amy, Were you able to see your doc yet? Just wanted to see how you were doing. Maybe you can run in the drug store and do their blood pressure machines if you don't have one at home. Another thing is to make sure when you go to the doc that they check your vitamin levels for any deficiencies, B12 deficiency is not uncommon with Lupus and can cause problems and I think I remember that was one of the problems for me.
Posted 4/15/2009 4:37 PM (GMT 0)
Hey Des! Thank you for checking on me. It means a lot to know people care...I called and left a message and have not heard back from them yet. Today it got really scary. It lasted a little longer than normal and it felt like my whole insides where on fire . From my head all the way to my feet. yet my skin had goosebumps and was really cold to touch I don't know what to do! I really can't aford to go to the doc until Friday...I have to pick up a prescription today at CVS so I will also check my blood pressure then.
Posted 4/15/2009 7:14 PM (GMT 0)

Hi! Amy,

Not to alarm, but often those drug store b/p machines read wrong. I know what you mean about budget constraints. Do you think you could call your drs. office, share about needing to wait until Friday, and asking if an office nurse could just check your b/p for you if you stopped in? They should certainly do it as a professional courtesy. I spent $40 at Walmart to buy one of those pump them up yourself kind of automatic machines. I checked with my own stethoscope and found it very accurate. Do you know any nurses or medtechs socially? Even EMTs at firehalls would take a b/p for you.  I know I wouldn't hesitate to take the b/p of anyone who asked me. I have even had neighbors call me late at night. Stroke is a leading cause of death in the US, and people with lupus are at even greater risk, so I worry that you shouldn't wait. I know how you feel with those cold tingling neuro flushes, too. Take care and keep us "posted" yeah

hugs,

suetoo

Posted 4/15/2009 9:28 PM (GMT 0)
Hey Suetoo

my old roommate is actually a CNA! I stopped by her apt on the way to get labs done at the hospital (not thinking I could get it done there) and my blood pressure was 118/67. I don't really know much about blood pressure but I think that is pretty good??? I saw in a previous post you gals where talkinga bout brain fog. Well, I go every other week to get blood taken and I complelty forgot about it until  a coworker walked by and said don't you usually leave early on Weds to get your blood taken? How sad is that...my coworkers know my schedule better than me! LOL.  Even with worrying about whats going on, I still didnt remember it.

I had to get  basic comprehensive blood work and a urinalysis done today to check my kidney funtion and I figure if something is off my nephrologist will call. if he doesnt call by Friday I will probably call him because if everything checks out my pred can come down some more :)! Hope everyone is doing okay!

Brain Fog...I just read my previous post and remembered I was supposed to get my prescriptions. I guess I will get them tomorrow...

Posted 4/16/2009 12:41 PM (GMT 0)

Good Morning, Amy and all,

Boy, do I love being home on spring break! I am glad to know your B/P is good, but it is important to keep checking it. A stroke is easier to prevent than treat. One of the hardest things about lupus, I think, is dealing with the cognitive impairment, aka "brain fog", I actually participated in a research study about it and went to the MRI scanner and EEG lab several times. There was a whole thread devoted to brain fog here awhile back. Besides falling alot, the cold flushes, (as I explained it to my immunologist, a sense of being on fire and bone chilled cold at the same time), numbness and tingling and crawling out of my skin, with literal panic attacks, were driving me crazy, and the symptoms that forced me to an immunologist and neurologist. I started Neurotin and plaquenil before prednisone, but they all help me immensely. When I first found this site, I was struck by the similarity in the meds many of us have to take. And in the symptoms so many of us have to live with. These 'chats' are a high point in my week,

hugs to everyone,

suetoo

p.s. forget? forget what? smhair

Posted 4/17/2009 2:09 PM (GMT 0)

Well I think I have it figured out...it was a sign my body telling me to rest. Since I didnt listen to it i have been making good friends with the floor and toilet if you get my drift....uggg! I went home from work yesterday early and had to pull over 3 times before I got home to puke. Well, it contiuned for awhile and i thought i was better and tried to go back to work. Nope, my body had other plans. I ended up having to pull over once on the way to work and then was in the bathroom making friends with the gross toilets and floor at work. So my superviser sent me home again. I took a fenergin and ended up throwing that up too! Not quite sure what to do so I guess I am just gonna go to bed and hopefully sleep this off. I have a fever and this is probably the 5th or 6th fever i have ever had. Its 100.2. Thats a pretty good one considering my temp is normal 96.9. Hope everyone is having a good Friday!

Nope....still haven't made it too the pharmacy

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