Back after 2 years! Anyone have frequent lightheadedness?

Discussion in 'Fibromyalgia Main Forum' started by StephieBee, Feb 20, 2009.

  1. StephieBee

    StephieBee New Member

    Hi! I havent been on the board in 2 years! My name is Stephanie....Im not sure how many are left from when I was here...but to those who have joined since...nice to meet all of you!

    Anyways, for the past week ive been experiencing extreme lightheadedness. I almost start to feel like Im going to get dizzy...Ive never experienced this before. I was wondering if anyone else has and if anyone had any theories about what it could be? I am going to see my rheumy on Tuesday and I will certainly address it with him but I wanted to see if any one here has had this happen. I would appreciate anybody's input.


  2. wendysj

    wendysj New Member

    There are too many woman about our age with this dd. It's nice to meet other woman my age but I hate it that we're all struggling with FM/CFS.

    I read your profile, you have my "Best Wishes" for the wedding. Good luck looking for a house too... There are certainly plenty out there for sale!

    The first thing I thought about with the lightheadedness is maybe sinus issues or inner ear problems. You have a cold or sinus infection?

    It's nice to meet you and I hope you and your Doc can figure this lightheadedness out.

  3. StephieBee

    StephieBee New Member

    Nice to meet you! Thanks for the good wishes! Looking for a house is so frustrating...but im keeping the wedding low key...i dont thing a big wedding and this dd will mix well! Can you say Bridezilla! By the time id be done id be rolling down the isle in a wheel chair! So only a small family thing!

    Well I had a major sinus infection about 2 months ago, so bad that i thought it was bronchitis! Doc gave me the Z pack and i still felt under the weather a for a little while after but my ears dont hurt and i dont have any kind of headache at all...I usually have a headache...or if its a sinus thing...i always have that pressure and pain in my face! Who knows! Ever since i was dx'd ive never had so many unexplained things happen to me!

    Thanks so much for your input! And I look forward to seeing you on the board...i love everyone here but its nice to have someone your age to talk to sometimes!

    Thanks again!
  4. 3gs

    3gs New Member

    Welcome aboard!

    Besides the darn sinus issuses I have found when I get lightheaded,ringing in ears etc it's time to go to my chrio. I see a NUCCA and I think it has something to due with the musclespasms and when getting released the bloodflow comes back.

    Congrats on wedding!
  5. StephieBee

    StephieBee New Member

    Thanks for the welcoming! Its good to be back! I just clicked on my name and i cant believe ive been a member since 2002! WOW! sorry...i always get off track! I look forward to getting to know everyone that has joined since I was on hiatus! LOL!!! Wish I was on vacation!

    Anyways, Ive only been to a chiro once before. I dont know the lingo be he took some x-rays I believe. He told me I was one of the worse cases he's ever seen...and something (he used some chiro lingo) was really screwed up! I had never heard the word before until he said it and i still cant remember it to this day....dang fibro fog! Anyways, that chiro gave me the heebie jeebies and I didnt care for him so i stopped seeing him...he was planning on billing my sessions under a claim from a car accident I had been in not too long before. What is a NUCCA? I do have muscle spasms...and they are very painful...especially in my legs and in my back (mostly lower). Thanks so much for your input and hopefully you will see this to answer the few questions i had. Im sure we will talk again! I dont plan on leaving the board again anytime soon!

    Thanks so much!
  6. AuntTammie

    AuntTammie New Member

    I have been having the same thing...actually getting really dizzy (light headed and vertigo) and having trouble breathing on and off with it...wound up spending last Sat in the ER....don't know for sure what is wrong, so I will be interested in hearing what you thing that I think it might be in my case, though, is diastolic cardiomyopathy (very common in PWCs)....causes decreased oxygen flow which makes one feel light headed, among other things....unfortunately most Drs do not know about diastolic cardiomyopathy, and the test that is used to DX it is rarely done yet (it's called an impedance cardiography)....anyway, it's one more thing to consider....I hope you get it figured out, though....and please let us know what your Dr says
  7. ask2266

    ask2266 Member

    I used to get very dizzy. It's a major symptom of cfids. Mine dissapated when I started on hormones and vitamins, then it came back. I take antivirals for all of my brain problems, and they seemed to make the dizziness go away. I have EBV and HHV6.
    [This Message was Edited on 02/20/2009]
  8. StephieBee

    StephieBee New Member

    Thank you to everyone that gave me their input...i really appreciate it! Im going to see what my rheumy says at my appt. on Tues. I did look it up on the internet and i didnt realize that it was a symptom of FM...probably because i never bothered to look because it has never happened before. It has gotten a little better and when it happens, it isnt lasting as long...which i am happy to report! But thank you again to everyone! Im so glad to be back here after being gone a few years!

  9. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    I saw this topic a few times but figured someone else would put what I thought of, but no one has.

    CFS is connected with dysautonomia. They go together. One seems to be a predisposition to the other. Dysautonomia is the central nervous system dysfunctioning. That can affect heart beat rate, digestion, immune system, adrenal glands, sex hormones, etc. Blood pressure is something else that goes awry with dysautonomia. Light headedness will come with blood pressure drops. It is worst when you stand up. The answer is to drink lots of water and increase salt intake. Low or fluctuating blood pressure can cause fatigue. The reason is that standing up and low blood pressure means the blood, with oxygen and nutrition is not getting to the cells. Oxygen is the most immediate need cells have. So in general, if you spend some time laying down, then your cells charge up more. Taking rest breaks during the day, with no energy demand to even your brain, which means no sensory input, say two times a day for at least thirty minutes, ideally right after a meal, will lessen the fatigue effect of low blood pressure. And it can be on the low end of normal and still have an effect on you. So if you get it tested, get it tested sitting, standing and laying down. And ask for the numbers, don't just let them tell you it is "normal". If it is worth something to you, you can go for the more sophisticated tilt table test. There is medicine for this, but many improve with more water, more salt and more lay down time. Oh, and always get up slowly.

    Now, separately, there is the issue of vertigo. Honestly, I don't know the science of what causes vertigo in people with our illnesses (FM and CFS). But I know it does come with our illnesses. I looked it up one time, but either there wasn't an explanation I could find or I forgot what it was. So all I can offer on this is personal experience: Vertigo developed later in my illness, it was not one of the first symptoms. It would come most often when I took a warm bath. I would be laying there feeling the soothing warm water, close my eyes, and then I would feel like my head was swaying back and forth. If I opened my eyes and fixed on something, it would stop. But if I closed my eyes again, it would come again. I know that we are not supposed to take warm baths because, again, it lowers blood pressure. But at the time, my aching body needed that warm bath. Like many of our symptoms, you help one, you make another worst. It would also happen sometimes when I would go to bed and more rarely at other times. It comes and goes. It was never bad enough to make me vomit. I don't know the science, as I said, so I don't know what to recommend on this.

    I will say that the difference between lightheadedness from blood pressure is like you are going to faint. The difference with vertigo is the feeling of moving, even if you aren't. It is like seasickness.

    Vertigo can be a major part of our illness. Laura Hillenbrand, the famous author of Seabisuit, was debilitated as much or more by her vertigo, for years, as she was the fatigue.

    I saw this in the book, Chronic Fatigue Syndrome, the Limbic Hypothesis, Tinnitus and vertigo are common CFS omplaints. The tinnitus almost always bilateral and is not accompanied by hearing loss. The vertigo gets worse as symptoms increase. Sophisticated neuro-oto-logic testing has not revealed any consistent pattern in CFS patients with vertigo. The most severe vertigo is caused by end-organ damage. A minority of CFS vertigo patients have evidence of endolymphatic hydrops and perilymphatic fistula, perhaps secondary to benign intracranial phertension. The rest seem to have a more central etiology for their symptoms. CFS vertigo is intermittent. For this reason a brain stem or more rostral source for the complaint possible, since accommodation to unilateral lesions occurs as a matter of coure. Even a complete section of one vestibular nerve will cause severe vertigo for only 6 months or so. There are so many inputs to central pathways mediating balance that it is difficult to lesion them all. Perhaps the intermittent nature of CFS vertigo does not allow tolerance to develop. If there is a temporolimbic focus it may elicit a "mirror" lesion in the other hemisphere which could contribute to chronicity. .....

    well, you get the idea.


  10. StephieBee

    StephieBee New Member

    I was going to bring up dysautonomia after I posted this because I saw another members post on this and I happened to look it up. Ive read that it is hard to get a doctor to test you for it. Would I have my Rheumy test me or would I need to consult with another specialist such as a neurologist?

    I do get dizziness from time to time but nothing bad enough that ever made me consult a doctor on. I have noticed that my blood pressure does drop sometimes for no reason...I do not have high blood pressure...the only time i register a little high is when the pain is severe! My FM pain has gotten worse...and it is at its worst its ever been right now but my BP only spikes when the pain is abnormally high or there is something else wrong...otherwise I have perfect BP or slightly under. But sometimes my rheumy will tell me my BP (which he always tells me after he takes it) and it is 100/70 sometimes the bottom number has been slightly lower. And there usually is no reason for it.

    But I am very serious about addressing this issue and I will go through any tests if this could possibly be something.

    Thank you so much for the very thorough post...I really do appreciate it.

  11. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    I don't know. In Birmingham, Alabama, we have a clinic specializing in dysautonomia. But they focus mostly on mitral valve prolapse instead of the blood pressure problem. I went to see a woman doctor who broke off from that clinic. I called beforehand to see if she treats chronic fatigue syndrome. Her receptionist said she did.

    I went there and she said she doesn't. So I asked her about treating me for the blood pressure drop problem. She said there are only three things to do for it, fluids, salt and one medication. She was hesitant to give me the meds since another doctor was treating my CFS. I asked her about the tilt table test. She said it isn't worth it. She said obviously I have the dysautonomia, so I just need to do what I need to do for it.

    I don't want it to sound like she didn't care, she did. It's just she was concerned that I was having a comprehensive treatment from someone else and she didn't want to throw in another medicine, when fluids and salt, along with standing slowly, would likely be enough for me. I don't faint unless I have a sudden severe stress, such as stumping my toe. The main problem I have is the other parts of CFS, not the blood pressure. (I never had the heart racing part of it.)

    So I don't know what kind of doctor to tell you to go to, cardiologists handle Mitral Valve Prolapse, which goes with dysautonomia. The dysfunction is actually in the nervous system.

    I was "diagnosed" with the blood pressure problem when I was seven. It was the second time I fainted. I was sitting in the waiting room of the hospital, waiting to be admitted for tonsillectomy. Remember, I was seven. And the fear of the whole situation caused me to faint. I went flat on the floor. Doctors didn't feel a pulse (they were feeling my neck) and my breathing was irregular. So I got the full CPR. I woke up. I am one of those who don't just faint but have seizures.

    After that, my mom took me to a neurologist. I had an EEG. Nothing showed. It was the nurse for the neurologist who took my blood pressure standing, sitting and laying down. She noticed it was reverse of what it should be. She took it again and again. The doctor came in and took the blood pressure in each position. He did it again and again. Then he had me walk away from him and to him in the room.

    He then announced to my mom that my blood pressure goes up when it should go down and it goes down when it should go up. (At least that is the way I remember it at 7.) He said in time I would learn to subconsciously control it. In the mean time, I should put my head down or lay down whenever I feel like I am going to faint. He offered no treatment.

    He was right. I was fainting every couple of years. After I fainted at age 18 when I was having blood drawn, I didn't faint again for over 10 years. Then I was running up my brick stairs and missed one, scraping my knee, and it was raining, so I fainted. And this time I had a grand mall seizure.

    I decided to check back with a new neurologist to see if they know any more about my mystery blood pressure problem. I had another EEG. And then all she would say is, "You don't have a seizure disorder. It's just your blood pressure dropping happens at a lower threshold than most other people. Anyone, put under enough stress, will faint. Your threshold is just lower." I asked why I have seizures rather than just faint. She said that is just the way some people are. There are people who are more likely to faint, and of them, some are more likely to have a seizure.

    I wasn't satisfied. I did my own research. But basically I found out it involves so many different parts of the body, that they don't know where the break down is.

    I say all of this to say you may be wasting your time to get a positive result on this. Then what do you do? Also, I don't know what type of doctor can do a tilt table test, it's not a machine that is found in every city. Also, you might find anyone, maybe yourself if you can get a blood pressure machine, can find the problem without a tilt table test.

    You might try first doing the fluids and salt for a month and see if it solves the problem.

  12. fivesue

    fivesue New Member

    I have been on the board for about 4 years now, but I have been quiet for some time, checking in now and then to see what's up.

    I remember you and was glad to see your name pop up.

    Hope the dizziness resolves itself...irritating. I have bouts with Vertigo so understand that feeling. Nothing really causes it, just comes and goes.

    Just wanted to say hello!

  13. StephieBee

    StephieBee New Member

    Long time no see! Its good to see a familiar name on here!

    Im hoping the lightheadedness is nothing...keeping my fingers crossed!

    But its nice to see someone i recognize on here that i used to talk to! Im sure we'll be in contact!

  14. twerp

    twerp New Member

    My first symptom of CFIDS was light-headedness. I never did get a diagnosis for the reason, despite undergoing many, many tests. However, I was given first Valium and then Klonopin. These are the only things I've found that help.

    So, here I am, nine years later, still taking the Klonopin.

  15. StephieBee

    StephieBee New Member

    Ya ive run the table on all benzos...When I was ten years ago I started taking Xanax...over the years they switched me to Klonopin and Ativan (which neither worked) and then i was put on Valium. I ended up losing my insurance and had to stop seeing the doctor that was Rx'ing my Valiium, but by that time I had been on it for years so now my rheumy has me on Xanax...I did a full circle. So Im in your boat...ive been on benzos for 10 years. Wouldnt be surprised if Im on them for alot longer..cant find anything else that works.