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Shellbell
07-20-2009, 09:18 PM
I woke up 4 weeks ago with Vertigo. I turned over in bed and so did the whole room! I have went to the doctor and finally they did a MRI cause this is lasting so long.The MRI came back normal. I have been tested for Lupus numerous times and it comes back negitive. My hair has thinned so much and still is. I have anemia really bad. I have to take iron and then it usually brings it back up. Any thoughts anyone????? thank you in advance

Danica01
07-21-2009, 12:59 AM
I have a funny story that I think you will appreciate. About five years ago I was suffering from vertigo really bad. It was horrible and made me feel so sick all the time. Well, my vacation rolled around and I went down to Costa Rica for 10 days. One night at dinner I was sitting at the table and I just felt this rolling sensation. I just figured it was my vertigo acting up. I was very wrong.......it was an earthquake! I just kept on eating and everyone was looking at me and finally I asked if they felt it too and they just laughed at me! I loved it. I did get over the vertigo but I had to take some medicine for it. I would ask you doctor about the meds that really help reduce the effects of vertigo. See what he says and then go from there. I am not sure if it is a sign of Lupus but I have heard of a few people having it on here. I am sure more will pop in later. I hope you feel better soon. I am sending you thoughts of a still bed tonight and a hug to help you get through this :hug:

crmj1183
07-21-2009, 06:13 AM
Danica, thats really funny, lol, lol, lol.
Wow!

Shellbell, Ive had vertigo before but not that bad, Ihope you feel better soon, tyr and hang in there :wacko:

Chriss

mountaindreamer
07-21-2009, 06:41 AM
i too will have bouts with vertigo....the first time it happened, i thought it was from drinking, but then i remembered that i had not been drinking.....

danica....that is just too funny....i can see you sitting at the table eating dinner while everyone is looking for a doorway.

Angel Oliver
07-21-2009, 03:01 PM
Ive learnt something here.....i have vertigo n didnt know it.I can be sat here n it feels like im on the rollercoaster n flip over,but obviously i dont move...just hold on.I never knew what that was.Also since being sick i have claustraphobia.Never knew just how bad until i had my first mri. Thanks for this info...gonna speak to the doctor about it.

Funny story Danica :)

Love Amanda.xxxx

Shellbell
07-21-2009, 03:11 PM
Thank You all for your replies. That story was pretty funny!

chas
07-21-2009, 03:17 PM
I have vertigo - on and off -sometimes very debilitating other times just when I lie down or move my head. There is actually a thing called the epley manouever. (http://www.youtube.com/watch?v=pa6t-Bpg494)

I have a very good GP - every time I had vertigo she checked my ears and sure enough they were full of fluid - so she prescribes a nasal spray for sinus and sometimes an allergy medicine for sinus hay fever. I also tried the Epley thing and it helps.

Check out the reading around the Epley thing as it explains a lot about the ears...

cheers

Angel Oliver
07-21-2009, 03:19 PM
You are welcome.But dont give up. I have so many symptoms like you have,yet still no diagnosis.My hair thinned so bad i lost the lot.But it has grown back.Falling out allot but i know it'll grow again, no patching just clumps when i wash it.
Dont give up.Ive had many normal come back results,doesnt mean the doctors are right.Keep fighting.Keep ging to the doctor.One day they will find the answer and will help you.

Love
Amanda.xxxxxx

kducks
07-21-2009, 03:40 PM
I woke up 4 weeks ago with Vertigo. I turned over in bed and so did the whole room! I have went to the doctor and finally they did a MRI cause this is lasting so long.The MRI came back normal. I have been tested for Lupus numerous times and it comes back negitive. My hair has thinned so much and still is. I have anemia really bad. I have to take iron and then it usually brings it back up. Any thoughts anyone????? thank you in advance

Shellbell,

Your lightheadedness might not be vertigo, it might be related to your anemia. My Lupus manifested itself in my blood to the point I had severely low red blood cell counts. I was extremely lightheaded all the time from it. I would have dizzy spells when I stood up and such. I had to get iron injections weekly because the supplements just didn't do anything to help. I had to go on very high steriods to help control the Lupus and once my counts went up, the lightheadedness went away. Just a thought, good luck in finding the answer to your problems.

Hugs,
Kim

Pearl
07-21-2009, 06:17 PM
I've had vertigo off and on over the years. You could have BPPV (benign, paroxsysmal positional vertigo). Usually noticeable when you roll over in bed. It occurs when the crystals in your inner ear become displaced, which causes the vertigo. The epley maneuver is designed to move the crystals back where they belong. This is the short version, and I'm not a doctor. However, I have experienced this before. It is supposed to be unrelated to the lupus. Go see an ear, nose and throat doctor. Search the posts here on the forum for vertigo. There may be some additional info elsewhere on the site.

Good luck.

Jana

SandyR
07-21-2009, 08:16 PM
I've had vertigo too. I've also had sinus infections that are so bad inside that they manifested vertigo without manifesting sinus symptoms more then a headache. If all else is normal with your tests and labs, ask for a sonogram of your sinuses and a weeklong antibiotic will set you straight as an arrow again.

Danica01
07-22-2009, 12:28 AM
The sinus problem is a good call......I have really bad sinus problem and when I have an infection the vertigo does come back. I never put the two and two together!!!!!! Thanks :yes:

DrinkofWtr
07-22-2009, 08:36 AM
I get vertigo sometimes and when I see my Dr. in August I am going to ask him if he will test my balance, as I am told I vere to the right when walking and I get dizzy really easy. I can just watch a fast car chase on TV and get dizzy. Motion sickness is terrible for me.

SandyR
07-22-2009, 03:32 PM
The sinus problem is a good call......I have really bad sinus problem and when I have an infection the vertigo does come back. I never put the two and two together!!!!!! Thanks :yes:

It took me a long time to link the two, but I am glad I finally did since the last sinus infection was completely asymptomatic aside from the vertigo and headaches (both of which I don't normally suffer from on an ordinary basis). Even the doc was surprised that my sinuses were as bad as they were when he looked with the scopes and sonograms. A dose of the antibiotics cleared all of it up real quick. Now I can get out of bed without falling over again.

dsunshine
07-22-2009, 03:35 PM
I had vertigo when I was first diagnosed in Nov. 2008 and was put on all kinds of meds. I remember having it more so when I first woke up in the morning and after I ate. I would have to lay down and close my eyes which I eventually would just go to sleep. Sorry to hear you don't have a diangosis yet but I do hope you don't have Lupus!!!

Danica01
07-23-2009, 12:35 AM
It took me a long time to link the two, but I am glad I finally did since the last sinus infection was completely asymptomatic aside from the vertigo and headaches (both of which I don't normally suffer from on an ordinary basis). Even the doc was surprised that my sinuses were as bad as they were when he looked with the scopes and sonograms. A dose of the antibiotics cleared all of it up real quick. Now I can get out of bed without falling over again.



You know what.......I had a horrible sinus and also didn't realize. I just had the headache and dizziness too!They were so bad that we had to do a pretty heavy dose on steroids. My Vertigo is much better after an infection like that.....I don't even have to takes medication for the Vertigo anymore :veryhappy:

wrightrs
07-23-2009, 01:37 AM
I've had Vertigo a lot. One time I was real sick with it. I went to the doctor for it. After the doctor. After the doctor, I decided to do some shopping. While shopping my purse was snatched. I called the police. I police right of the bat started questioning me. Like he didn't believe my purse was taken. He kept asking me if I was by myself. I stared feeling really bad. Then he stared to question me about that. I was sweating also. He said why are you sweating. I was hot it was the middle of summer. He wasn't interested in finding who took my purse at all. He asked me all about my day. I told him I was sick and been to the doctor. I that I just stopped to do some shopping. He even asked me if I was taken something. I thank he thought I was on something. I was thanking I was going to get a rested for getting my purse snatched. He even had me sit in the back of his car while he wrote stuff.

SandyR
07-23-2009, 06:53 PM
Becky,
what a horrible experience! I hope he at least apologized to you for being an a$$ and treating you like a suspect instead of a victim!

SandyR
07-23-2009, 06:55 PM
You know what.......I had a horrible sinus and also didn't realize. I just had the headache and dizziness too!They were so bad that we had to do a pretty heavy dose on steroids. My Vertigo is much better after an infection like that.....I don't even have to takes medication for the Vertigo anymore :veryhappy:

No more vertigo for me either!!!! :veryhappy: Now if I feel it, it's right to the ENT!

Shellbell
07-29-2009, 11:14 AM
Thank You all for all your information. I am sure being so low in iron isn't helping me. I am back on the Iron and will retest in one month to see how my blood count is. Since i had an MRI that came back normal would that rule out M.S? OR would they have to been looking for that? Thanks again everyone

Shellbell
07-30-2009, 12:54 PM
[QUOTE=Shellbell;57473]Thank You all for all your information. I am sure being so low in iron isn't helping me. I am back on the Iron and will retest in one month to see how my blood count is. Since i had an MRI that came back normal would that rule out M.S? OR would they have to be looking for that? I was going to ask the Doctor when i saw her and i forgot.

ButterflyRN
07-30-2009, 01:06 PM
Pearl is right about the crystals in your ears. Some people have this issue. I never knew about it (even as a nurse) but one of our employees fell off a stool at work and when she hit her head it knocked the crystals loose. My coworkers mother in law had the same problem. The crystals can even make your balance off where you can just fall to the side. I would definately go see a Ear Nose Throat doc. They can give you a thoro exam!

keep us posted!

And Danica....lol...funny story girl!

magistramarla
07-30-2009, 02:37 PM
I have vertigo, too. Mine comes from having Meniere's syndrome. It is a neurological disorder which affects the amount of fluid in the inner ear. It causes vertigo, balance problems and loss of hearing. I'm convinced that it is yet another manifestation of Lupus.
Marla

jfal
08-01-2009, 09:02 AM
One of my first symptoms was a frequent dizzyness attack. I could always tell when I was going to get it by a metallic taste in my mouth. Not really vertigo, more like standing up quickly when drunk.

Thankfully these seem to have gone away after 6 months on Paquenil.

Jewelz
08-01-2009, 09:09 PM
Hi the bad crystals is called BPPV. Benign Proximal Positional Vertigo.

They can tell if you have BPPV by putting you into the offending position and seeing if you have nystamus.

The fix for it is VERY easy - done with a physical therapist that specializes in it - series of movements they put you through that moves the crystal back down the canal to where it's suppose to be. Go home and sleep sitting up for a few nights, go back to check to see if it happens again..if it does do the same thing over until it stops.

Go to an ENT for help with this. It's such a bad problem with a very easy fix.

Feel better
Jewelz

didn't see that Chaz and Pearl had already said most of this! I guess I should have just said DITTO!

ashleybaby715
08-03-2009, 07:36 PM
hi there! i have been diagnosed w ith SLE. i suffered from some hair loss... more ike extra hair caught in the drain after a shower, or extra hair in the brush when i brush it.... or like, i'd always have hairs on my shirts because when i'd pull them over my head, strands would just kinda break off....it was bad. but its alot better now ! thank god!!!
i also was EXTREMELY anemic, and i have to take a daily vitamin with extra iron to keep my levels normal. if i miss that pill, i get extremely sleepy and i can feel my body not feeling the way it should.
i don't have vertigo, but i do get motion sickness now...i got sick on a boat... i have to take motion sickness pills to fly as well, or else, well its not gonna be a pleasant flight for me. haha

i hope you get some kind of relief soon!!
keep in touch!
Ashley<3


I woke up 4 weeks ago with Vertigo. I turned over in bed and so did the whole room! I have went to the doctor and finally they did a MRI cause this is lasting so long.The MRI came back normal. I have been tested for Lupus numerous times and it comes back negitive. My hair has thinned so much and still is. I have anemia really bad. I have to take iron and then it usually brings it back up. Any thoughts anyone????? thank you in advance

sits_inthe_corner
08-04-2009, 04:30 AM
Had vertigo for a few years now...I manage it by doing head movements that my doctor showed me.

Soon as it flares up I grab my hunny and get him to help with the movements....it's worked great...no meds needed and less occurances of vertigo.

Faith
08-05-2009, 01:30 AM
Hi Ladies,

Another suggestion to consider as well: Anti-Phospholipid Anti-body Syndrome aka Hughes Syndrome (named after Dr. Hughes in London whom first diagnosed it). Another auto-immune disease.

Last Summer I had vertigo and dizziness. After MRIs, EEG's, neurology apptmts, etc., I was referred to a hematologist. If I remember correctly, I took an Anticardolipin IGG test and was positive for Anti-phospholipid Syndrome aka Hughes Syndrome. I then had to take a D-dimer test. I knew something was definately wrong and scared my 11 year old. I felt like I was there but not there as if I might pass out. A very weird feeling.

If the blood is not thinned, pulmonary and brain aneurisms occur which are fatal. Plaquenil is supposed to thin blood as well and I have been on that for 3+ years; it hasn't helped thin it enough.

I now take 80 mg. of baby aspirin to thin my blood as it is too thick. At some point, hopefully much later, they told me I would have to take blood thinners like Coumadin. When travelling, I have to walk around every 30-60 minutes to prevent blood clots (either in the car or in a plane). I am not trying to scare anyone; just sharing information as none of the specialists could figure it out except the hematologist.

Take care,

Faith:yes:

jfal
08-05-2009, 01:27 PM
What Faith said about APS is very true. I was first diagnosed with Primary Anti-Phospholipid Syndrome (PAPS) but since have learned that it is secondary to Lupus (SAPS). A blood test for syphilis (FTA-ABS) will give you a false positive in the presence of APS and is a relatively cheap method to see if further testing is needed.

Faith,
Plaquenil is NOT a blood thinner, it works to slow the production of the anti-bodies. Your baby aspirin IS a blood thinner. As I am allergic to aspirin I take Plavix as an alternative.

Shellbell
08-05-2009, 08:13 PM
went to an allergist yesterday, he seems to think it is Minears Disease, but i don't have alot of the symtoms of that. I don't have hearing loss of ringing in the ears. It has gotten alot better and right now i am on a anitbotic for sinus infection. Doctor wants to see if the anitbotic will help or not. My sinus infection is mild so we will see. Thanks again for all your comments

Faith
08-06-2009, 02:18 AM
Hi Jfal,

Plaquenil is NOT a blood thinner, it works to slow the production of the anti-bodies. Your baby aspirin IS a blood thinner. As I am allergic to aspirin I take Plavix as an alternative.

I completely understand Plaquenil is used to slow auto-immune anti-bodies. Shortly after being diagnosed, I read up on aPL aka "Hughes Syndrome" from Dr. Graham Hughes of London who was the first doctor that discovered aPL and pioneered treatments and protocals. Dr. Hughes' practice primarily consists of Lupus patients until many began having the symptoms that was originally called "Hughes Syndrome" aka aPL. In Europe, it's known as "Hughes Syndrome" and in the U.S. as aPL. The book is extremely educational and informative.

It is unfortunate that many internists and rheumatologists in the U.S. are unaware of the symptoms, labs and protocals. It is another auto-immune that requires education for patients and doctors alike. I highly suggest Dr. Hughes' book for anyone who really wants to understand aPL. I had never heard of an INR until I read his book. INR measures how thick your blood is which is essential when flying as our blood thickens.

I hope this helps anyone whom may have aPL. :yes:

Per Dr. Graham Hughes from his book "Hughes Syndrome" on page 47 it states:

"Plaquenil is an extremely useful drug in Lupus and Sjogren's Syndrome. One of the additional actions of Plaquenil is as a (mild) anti-clotting agent-rather like junior aspirin. Thus, in Lupus patients with aPL it might well have extra hidden benefits."

Take care,

Faith