Discussion in 'Fibromyalgia Main Forum' started by greatgran, Jan 5, 2007.

  1. greatgran

    greatgran Member

    Not sure if this is a CFS symptom or MCS or what is happening to me..

    I will actually be having a so called good day and then suddenly its like I am blacking out..This only last for a few seconds, I close my eyes and if not sitting down, sit down,(this happens when sitting as well as standing).. something about closing my eyes seems to help..Its like I am dying or blacking out..Afterwards I have this weird feeling in my head and like the life has been sucked out of me..This usually puts me to bed for a day or a week..

    I have mixed symptoms, the head thing, aches, chills, nausea,like the life has been sucked out of me, as if I might have sinus or allergy problems..Its so hard to describe..After resting then I am back to my usual discomfort until it happens again..

    My family has remarked that my looks even change, like I am real sick..Then I seem to have a fullness in my head, ears and not sure if its allergy related, sinus or what it could be..

    I haven't mentioned this to my doctor in detail, as it doesn't happen often ...She didn't seemed concerned when I was trying to describe it to her..

    Just wondering if anyone could relate, or what could be going on..Will allergies cause a blacking out feeling??

    Thanks for any input..

  2. sfrazier

    sfrazier New Member

    Hi Greatgran I know what your talking about I think. For me the room actually starts to get dark and the sound starts to dim. It's like I'm going to pass out but my doctor and I call it blacking out. I've been told there is no good reason for it. Could be side effects from the drugs, could be the fibro for me could even be a sudden drop in your blood preasure for absolutely no reason. I go to a pain management clinic and they told me that as long as I don't actually pass out or as long as it doesn't happen every day or more then once a day I'm not to worry about it. That of course is easier said then done. I've finally just chalked it up to one more symptom of this grand DD and don't worry about it now. Even my kids have gotten use to more going dealthly white and just standing there holding on to something. lol. Hope this helps a little......SueF
  3. shar6710

    shar6710 New Member

    Yep I've been doing this for over 2 years now. It is very difficult to try to explain to others who haven't experienced it.

    I told friends its like someone is in my brain shutting off circuits one at a time. I've also told my doc about the fullness although I've called it pressure at times.

    I'll be interested in the replies you get.

  4. greatgran

    greatgran Member

    Knowing that this has happened to others does relief some of the anxiety that goes with wondering if its a tumor etc..

    Do you ever think in that direction?? All these what if's..

    I too have a lot of anxiety and some depression..I am suppose to see an immunologist (spelling) the 11th of this month.. I wonder if this will be another wasted doctor's visit...If I even go..

    Thank you so much for your reply..It helps so much to talk to someone that can relate..hoping for more inputs for us...

    God Bless,
  5. shar6710

    shar6710 New Member

    If this is a new symptom for you and you haven't had any recent head scans you might want to request an MRI. Its always a difficult decision for me to decide when to pursue testing since of course everything comes back perfectly normal.

    In my case I've had almost every test known to medical science: MRIs, CT scans etc and so all that relly scary stuff has been ruled out.

    Also I was so acutely ill at first that most of the time I figure since I didn't die then, the symptoms I have now sure aren't going to kill me. Hehe


  6. Hope4Sofia

    Hope4Sofia New Member

    Yes, I have done this from the beginning (about 16 years). I told many Dr's about it and was always ignored until this year.

    FINALY, I was tested. I took a tilt table test which revealed a problem with my autonomic nervous system. They call it dysautonomia. It can take different forms. For me it is a drastic drop in blood pressure (hypotension) along with a rapid heart rate (tachycardia).

    I black out several times a day and always feel week and tired. I black out upon standing (orthostatic hypotension) as well as when I'm upright for a while like in line or shopping etc.

    They put me on Toprol XL. I'm on a fairly low dose right now because I'm also on Cymbalta which is supposed to help. Honestly, they aren't enough. I still black out quite a bit. The problem is that I also have a very low BP to begin with and Toprol tends to lower it even more, so hmmmm.

    I hope this is helpful to you. I guess if I have any advice about getting help it might be to be persistant and to go to the right Dr. For me it was a cardiologist that finally sent me for the test.

    Some people say the tilt test isn't necessary because you should be able to find it with the sit and stand test. I disagree as the sit and stand didn't reveal much for me but the tilt test was a solid positive.

    Good luck,

  7. greatgran

    greatgran Member

    Thanks, for your input..I am a big chicken and declined the MRI and Tilt Table Test...I paniced with the MRI but did have a CT Scan which was normal, this was done a few years back when all this started..

    The Cardo, suggested the Tilt Table but I told him I was to anxious, at that time I was having vertigo and dizziness, which I haven't had in a few years...There is the fear of it always returning..The Cardo wasn't to insistant but if the dizziness, vetigo continued I would have had it done..The Neuro said anxiety...

    So, as you can see I am a basket case..Want to know and to chicken to go for test..even with xanax..

  8. Hope4Sofia

    Hope4Sofia New Member

    Well, you're in a tough spot if you don't want to do the testing, BUT.... I agree that you should check your BP.

    I test mine at home on a regular basis. I tend to run low (95/55 - 105/60). My heart rate also runs low (56 this morn.) but then I can feel it race up above 100.

    My point is your Dr might be willing to do some tryal meds based on your BP findings alone. This could help to confirm a diagnosis for you without the scary tests.

  9. Cromwell

    Cromwell New Member

    Last year we had a longish thread on this sensation that I call "Weird in the head feeling".

    You describe it very well.

    Mine started after a long bout (just about a year) of vertigo and I get this "about to black out or pass or die" sort of swoony thing in my head several times a day.

    Neuro's have dismissed it.

    I think it is related to FM/CFS though as many people have it here.

    Love Annie cromwell
  10. charlenef

    charlenef New Member

    it could be a type of migraine i have had this in the past it is caused for me from overuse of my back and neck muscles (not for a normal person but me) hope this helps charlene
  11. marilynb

    marilynb New Member

    This is so freaky, I have had 3 episodes of feeling light headed/dizzy & feeling like I am going to fall over or pass out. I have had this happen over the last three weeks. I also have low blood pressure. Yesterday, at the Drs office it was 98/70.

    I went to my regular family Dr. yesterday, because I have also had chronic congestion for over a year now. Lately, it has been more on the left side, with swelling in my cheek & left ear ringing (but then I've had the ringing in my ears for a long time). Anyway, he put me on antibiotic & a nose spray & decongestant. Told me it's probably upper respiratory/middle ear. If it doesn't clear up, he wants me to go to an ear nose throat Doc.

    I'm really wondering now. Could this just be another effect that FM does to us??

    I am also on Cymbalta & 2 of my episodes happened, when I missed a dose.

    How many of you are on Cymbalta? If so, has this happened to you after missing a dose??

    Could it be the Cymbalta???

    Just wondering. Please give me your thoughts on this.

  12. marilynb

    marilynb New Member

    Bump for more info
  13. Hope4Sofia

    Hope4Sofia New Member

    Regarding Cymbalta, that could have contiubuted to your dizziness. I also take cymbalta but my problems with blacking out were around for many years before I started any medications.

    For me the sensation actually is Blacking out - everything goes dark, tongue gets numb and tingly, sound seems far away except maybe the thumping of my heart beat in my ears. I usually just grab something to stabilize myself till it passes.

    I also get episodes of dizziness/vertigo or feelings of motion sickness but those are different for me.

    Don't know if this helps you or not.

  14. greatgran

    greatgran Member

    Thanks to each of you for your input..My blood pressure is fine and migraines have been ruled out..So maybe this is a part of CFS of Fibro...As I didn't have this before the DD..

    I did see an ENT and he didn't have an answer I was treated for vertigo and sinus infection then referred to a neuro who said anxiety..I too, have ringing in my ears 24/7..

    The only Rx med I take is xanax which was given to me by the ENT for the ear ringing and it does help me tolerate the ringing ..and tones down the sound...I know this isn't caused by xanax as I had this before the meds..

    God Bless,
  15. dr32164

    dr32164 New Member

    I often have the blackouts and have been diagnosed with vasovagal syncope. Here is what I was able to find on the web for a definition:

    Vasovagal Syncope
    What You Need to Know

    All information contained in this webpage is intended for Canadian residents only
    and is NOT intended as specific medical advice for any individual
    with a medical condition similar to that described herein.

    This page was last updated: Tue, Nov 18, 2003



    You have been diagnosed with a condition called vasovagal syncope. Other names for it include fainting, neurocardiogenic syncope and neurally mediated syncope. This is a very common condition that results in fainting or a blackout in as many as half of people at least once in their life. Three percent of people develop it repeatedly.

    What is Vasovagal Syncope?

    Vasovagal syncope is not a serious or life threatening condition, but in effect an abnormal reflex. This results in a drop in blood pressure leading to decreased blood flow to the brain resulting in dizziness or fainting. The mechanism of vasovagal syncope is the subject of a great deal of research. It may best be described as the following:

    • When we sit or stand, blood settles in the legs and abdomen
    • As a result, less blood returns to the heart
    • The blood vessels leaving the heart have detectors in them called baroreceptors that detect a decrease in blood pressure
    • The baroreceptors send a message to the brain, which in turn sends a signal to the heart to increase the heart rate, and tighten up the blood vessels
    • This process occurs constantly in all of us as we adapt to changes in posture
    • In vasovagal syncope, an abnormal reflex occurs that results in withdrawal of the message that speeds up the heart and tightens up the vessels, often because of an overshoot in the reflex that compensates for the fall in blood pressure
    • The resultant decrease in blood flow to the brain will result in dizziness or lightheadedness if mild, and progress to fainting or loss of consciousness if more severe
    • There are several variants of vasovagal syncope that can trigger the same reflex, including situations such as the sight of blood, injury, blood testing (needles), going to the washroom and several others that are quite uncommon.

    What are the symptoms?

    The symptoms in vasovagal syncope are slightly different for each person, but often include many of the following characteristics:

    • Most episodes occur while standing, occasionally sitting and almost never lying down
    • Patients often describe feeling very warm and sweaty before blacking out
    • Nausea and rarely vomiting can precede episodes
    • Observers often describe the patients as pale (“white as a sheet”)
    • Patients are usually unresponsive (“out”) for less than a minute
    • Patients may have some twitching while unresponsive, but seldom shake violently, bite their tongue or lose control of bowel and bladder function. The latter are more suggestive of a primary seizure.
    • After regaining consciousness, patients are usually immediately aware of their surroundings, who and where they are
    • After an episode, patients often feel somewhat dizzy and report feeling tired for as much as 24 hours
    • Patients that learn to recognize the warning signs can avert losing consciousness by sitting or lying down promptly.

    What tests are done?

    If you have reported your symptoms to your Doctor, he or she has already done the most important test to make the diagnosis of vasovagal syncope: hearing your description of the symptoms you experience (called a medical history). Tilt testing is sometimes performed to try to reproduce an episode. Tilt testing involves what doctors call a postural stress test. While the blood pressure and heart rate are monitored, the patient is tilted up to 80o (almost standing) to try to trigger an episode of loss of consciousness. The following is a description of a tilt test:

    • Testing is usually done in the morning on an empty stomach
    • Typically there are 2 nurses in the room, and a doctor in the room or nearby
    • The patient lies on their back on a motorized table
    • A blood pressure monitor is attached to the finger and the arm, and EKG electrodes are connected to monitor the heart rate
    • An intravenous is inserted in the hand or arm
    • The patient is monitored for 10 minutes at rest
    • The table is raised to 80o and monitored for 30 minutes
    • If an episode does not occur during this phase, a medication is usually added to trigger an event (Isoproterenol or nitroglycerin)
    • If an episode occurs, the patients is quickly returned to the lying position, and the test is over

    A tilt test is not a perfect test. 75% of patients that are felt to have vasovagal syncope will have a positive test. People that do not have fainting will have a positive test (i.e. faint) 15% of the time. The nurse or doctor will ask questions about the similarity of symptoms to episodes that have occurred spontaneously before the test.

    Other heart and brain tests are often performed in patients with blackouts to look for other causes (link to a general section on syncope here). Vasovagal syncope is the most common cause of blackouts. Other common causes include an arrhythmia when the heart beats too fast or too slow, as well as seizures.

    What are the treatments?

    The treatment of vasovagal syncope ranges from simple lifestyle measures to medications, and very rarely pacemakers. Most patients are significantly improved with lifestyle measures, which are always tried first.

    Lifestyle measures

    These are primarily directed at raising the blood pressure and improving the blood pressure “reserve”.

    • Trigger recognition: patients should do their best to recognize situations where episodes are likely to take place. This includes avoiding prolonged standing (church, assembly, lineups), looking away during blood testing etc. If symptoms occur, crossing the legs and squeezing while sitting, or laying down and elevating the legs will help shorten the episode and raise the blood pressure. Though awkward, this is less of a spectacle than blacking out and drawing attention to oneself. It is seldom necessary to attend the emergency room.

    • Salt and Water intake: The main components of blood are salt and water. Most patients with vasovagal syncope have periods of low blood pressure, or usually have low blood pressure. Increasing fluid intake to a minimum of 8 cups (2 liters) and preferably 12 cups (3 liters) per day often raises blood pressure. Ideally these fluids and the diet will include more salt to accompany the water. This can take the form of electrolyte solutions (Gatorade like fluids), fruit juices, salt in cooking or at the table, or salt tablets that can be requested from the pharmacist. Salt tablets may be hard to find. We have found them through IDA Pharmacies, Certified brand NaCL (sodium chloride) tablets, 600 mg each, usually taking 2-4 tablet per day. More salt and water are necessary if the weather is hot, or if vigorous exercise is performed, which increase body water loss.

    • Tilt training is a simple way to train the blood vessels in the legs to improve their ability to pump blood back to the heart. Stand with your feet 15-20 cm (6-8”) from the wall and lean against the wall for 30 minutes at least 4 times a week. At first this may cause dizziness or even blackouts, but over time it will allow affected patient to tolerate standing without frequent dizziness. Regular weight bearing exercise (walking, jogging, stairmaster etc) will also improve muscle pumping of blood back to the heart.


    Several medications are used in the small number of patients that do not respond to lifestyle measures. Clinical studies have suggested that each medication may have some effect, but there is not enough data to prove their effectiveness, and no information that compares one drug to another. The dose is usually built up gradually for all medications. Detailed information on each medication can be obtained from your local pharmacy. The following are frequently used medications:

    • Beta blockers: metoprolol, atenolol, propranolol, bisoprolol. These medications block the adrenaline system, preventing the “overshoot” component of the abnormal reflex that precedes the blood pressure drop. They are usually taken once or twice a day.
    • Fludrocortisone: Fluorief. This medication is the naturally occurring messenger that tells your kidneys to raise blood pressure by holding on to salt and water. It is usually taken once or twice a day.
    • Midodrine: Amitine. This medication raises blood pressure by tightening blood vessels. Careful blood pressure monitoring is performed when starting the medicine. It is usually given 3 or 4 times a day.
    • Paroxitine: Paxil. This medication and other similar medicines (SSRIs) are usually used to treat depression or anxiety. They also appear to prevent the brain reflex that leads to blood vessel relaxation and heart rate slowing. They often take 1-2 months to have an effect.

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