Discussions By Condition: I cannot get a diagnosis.

Why have my posts received no replies????

Posted In: I cannot get a diagnosis. 28 Replies
  • Posted By: SyncopalGal
  • March 24, 2008
  • 03:05 PM

Why are my posts getting 0 replies?? I have posted about two separate conditions on this board, one of which was posted in November and not one person has any idea what could be wrong? Here are my two posts again, please if someone has any clue what's going on, I'd like to know! I see tons of replies to other posts with outrageous symptoms! There's got to be someone who knows about mine!!

Post #1

I have been having the same syncopal and near-syncopal episodes for 14 years. I start out by getting dizzy and lightheaded, my muscles (whichever are holding up my weight) spasm, and sometimes I lose consciousness completely and fall. These episodes range from one or two a week to 5 or 6 per day and seem to have no pattern.

At the age of 14 I had a full cardiac workup and nothing was found. I was also tested for Epilepsy and was negative. I went through highschool and college just dealing with the episodes because the doctors had no idea what was going on.

Eventually I joined the military and even in their full exam of me, they found nothing wrong.

Recently I gave birth to my son and realized the danger of possibly having an episode with him in my arms. I went back to the doctors and this time they did an MRI and found two soft tissue masses in my brain. I was referred to an ENT who confirmed it with a CT scan and sent me 5 hours away to a surgeon to discuss removal. We were certain we'd hit the nail on the head.

I arrived at the surgeon only to hear him say the masses were not causing my symptoms and I have an electrical problem in my brain.

In addition to the syncope, I have frequent headaches which may or may not be a symptom of a larger condition.

So here I am, 14 years after the first episode and still no answers! Does this ring a bell to anyone? I am frustrated and tired of being dizzy and losing consciousness!!

Please help!!


Post #2

My jaw constantly pops whenever I open my mouth, no matter how wide. It pops when I open and close and when I shift my jaw from side to side. Recently a new phenomenon started where it pops twice when I open my mouth. It pops everytime I chew also.
My jaw also pops when the jaw is moved manually while the muscles are relaxed (letting my jaw rested in my hand and pushing it from side to side.)
There is very little pain, usually just a dull ache occurring when I've been using my jaw excessively like chewing something hard or chewing gum. My bite seems normal, there's no weird placement of my jaw when my mouth is closed, it just pops audibly and it's uncomfortable!
In addition to this I have a clicking sound in my ears when I swallow that comes and goes.

Reply Flag this Discussion

28 Replies:

  • I am not a Dr. but it sounds like you have TMJ where your jaw is concerned. Do you know if you grind your teeth while sleeping?? If so, you might want to invest the $20 and get a night guard from your pharmacy.
    jomomma430 21 Replies Flag this Response
  • I am not a Dr. but it sounds like you have TMJ where your jaw is concerned. Do you know if you grind your teeth while sleeping?? If so, you might want to invest the $20 and get a night guard from your pharmacy. I've definitely never grinded my teeth before, the thought of it makes my stomach turn! I looked at TMJ, I don't have any pain when my jaw actually pops, just an aching after a whole day or overuse.... thank you for the reply! I will definitely look into a night guard.
    SyncopalGal 10 Replies Flag this Response
  • I am sorry that you are going through all of this. I would like to start off telling you that I also had some of you same symptoms with the dizzy all the time and comming close to passing out. My ears would ring and it would just happen when ever it wanted but then became an all the time thing. I also suffer from cluster and migrain headaches. My Dr said it was a form of panic attacks and put me on Zoloft and boom the dizzyness was gone until i got used to the meds then I was switched to Effexor and it is working great as long as I dont miss a dose. I dont fell like an anxious person but he said it could just be a chemical imballance but what ever it is this worked for me.And on to the jaw thing sounds to me like a TMJ problem a dentist can help with this. Again I also have TMJ problems but usually only when I chew to much gum. Anyway I hope this helps even just a little.
    Anonymous 42,789 Replies Flag this Response
  • What medications are you on? Some medicines can actually cause the symptoms you are having?
    TaylorDeelwithit 382 Replies Flag this Response
  • I've never taken any medications other than short-term pain relief and stuff like that here and there. The dizziness started in the 7th grade when I seemingly had no medical problems except the occasional headache. The jaw popping was on and off for as long as I can remember, but has become constant for the last one or two years with no relief. Nothing I take affects either condition, good or bad.
    SyncopalGal 10 Replies Flag this Response
  • Post #2 My jaw constantly pops whenever I open my mouth, no matter how wide. It pops when I open and close and when I shift my jaw from side to side. Recently a new phenomenon started where it pops twice when I open my mouth. It pops everytime I chew also. My jaw also pops when the jaw is moved manually while the muscles are relaxed (letting my jaw rested in my hand and pushing it from side to side.)There is very little pain, usually just a dull ache occurring when I've been using my jaw excessively like chewing something hard or chewing gum. My bite seems normal, there's no weird placement of my jaw when my mouth is closed, it just audibly and it's uncomfortable!In addition to this I have a clicking sound in my ears when I swallow that comes and goes. hey i have got the same jaw problem..... sounds exactly like me.... for me i think it is connected with having steinert's disease (myotonic dystrophy..... ) i dont know about you though.... do you have other muscle problems.????
    julie obeid 12 Replies Flag this Response
  • They're all too busy trolling me, and I see you joined in. With that being said, I could give you the name of my neuro who heard my jaw pop when he had me open my mouth, but heck, if you had to live with Lyme, that might actually make my day. HAHA Munchausen calm down, we are not TROLLING you... you are trolling the forums. blaze nobody feels sorry for you when you act all defencive like that, im at a loss for words because i have been nice and tried to help you then i was rude, and it never seems to get through to you. just keep trolling like this, dont listen to anybodys advice. hows it feel to give a whole website a bad name? but dont listen to me because you must think your god, you listen to nobody but yourself. and i feel sorry for you
    GivenUp 135 Replies Flag this Response
  • I am not a doctor, and I have been trying to get my own diagnosis, also...and I want to help with advice, so for the first question about syncope and fainting; I would think it might have something to do with vascular spasms, because I also get momentary feelings of fainting with vision darkening, and the eye doctor said I was having vascular spasms. But I do not know what causes them, or if they are serious. Ask your doctor if vascular spasms could be a possibility. Or maybe your syncope has something to do with your blood pressure. Has your blood pressure ever been high? For the second question, about your jaw that pops, I think you just might be double jointed in your jaw, and it does not sound too serious.
    Anonymous 42,789 Replies Flag this Response
  • They're all too busy trolling me, and I see you joined in. With that being said, I could give you the name of my neuro who heard my jaw pop when he had me open my mouth, but heck, if you had to live with Lyme, that might actually make my day. I don't need your Neurologist to hear my jaw pop....my husband can hear it from across the room. But thanks for the concern. I've been referred to an oral surgeon who, no doubt, won't suspect Lyme or microwaves to be the reason for my jaw popping.
    SyncopalGal 10 Replies Flag this Response
  • They're all too busy trolling me, and I see you joined in. With that being said, I could give you the name of my neuro who heard my jaw pop when he had me open my mouth, but heck, if you had to live with Lyme, that might actually make my day...................U are complete Poison !!!:eek: GET HELP !:eek:
    Tootsie 628 Replies Flag this Response
  • I can't offer any help with Post #1.Post #2 sounds like TMJ which I have. My first episode was 35 years ago. My jaw locked up and I ended up in ER. They gave me valium which helped. That's the only time that has ever happened, but it was my beginning. My jaw has popped for years just as you describe. Most of the time it's not a problem. But stay away from chewy things like gum, caramel, etc. as they tend to cause problems and your jaw will be sore. You can also get headaches. I grit my teeth at night, but don't grind. I don't use a night guard but I hear they work for some people. Be careful of suggested remedies. I have heard of surgery and therapies, but from what I know they often don't work, and some cause more problems. So if anything is suggested to you, be sure to investigate it well.
    Beth56 272 Replies Flag this Response
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  • Givenup, I gave this website a bad name? I think you'd better go back and look at the whole thread you posted before you blame me. By the way, I never asked for your advice, as "lovingly" as it's been offered to me with a thread that begins with "you all know how much I hate blaze..." Come on, Blaze, Tootsie and GivenUp - you are ALL acting like spoiled little children...and none of this stupid bickering is helping ANYONE!!! Enough!!! DOM
    acuann 3,080 Replies Flag this Response
  • Why are my posts getting 0 replies?? I have posted about two separate conditions on this board, one of which was posted in November and not one person has any idea what could be wrong? Here are my two posts again, please if someone has any clue what's going on, I'd like to know! I see tons of replies to other posts with outrageous symptoms! There's got to be someone who knows about mine!! Post #1 I have been having the same syncopal and near-syncopal episodes for 14 years. I start out by getting dizzy and lightheaded, my muscles (whichever are holding up my weight) spasm, and sometimes I lose consciousness completely and fall. These episodes range from one or two a week to 5 or 6 per day and seem to have no pattern. At the age of 14 I had a full cardiac workup and nothing was found. I was also tested for Epilepsy and was negative. I went through highschool and college just dealing with the episodes because the doctors had no idea what was going on. Eventually I joined the military and even in their full exam of me, they found nothing wrong. Recently I gave birth to my son and realized the danger of possibly having an episode with him in my arms. I went back to the doctors and this time they did an MRI and found two soft tissue masses in my brain. I was referred to an ENT who confirmed it with a CT scan and sent me 5 hours away to a surgeon to discuss removal. We were certain we'd hit the nail on the head. I arrived at the surgeon only to hear him say the masses were not causing my symptoms and I have an electrical problem in my brain. In addition to the syncope, I have frequent headaches which may or may not be a symptom of a larger condition. So here I am, 14 years after the first episode and still no answers! Does this ring a bell to anyone? I am frustrated and tired of being dizzy and losing consciousness!! Please help!! Post #2 My jaw constantly pops whenever I open my mouth, no matter how wide. It pops when I open and close and when I shift my jaw from side to side. Recently a new phenomenon started where it pops twice when I open my mouth. It pops everytime I chew also. My jaw also pops when the jaw is moved manually while the muscles are relaxed (letting my jaw rested in my hand and pushing it from side to side.)There is very little pain, usually just a dull ache occurring when I've been using my jaw excessively like chewing something hard or chewing gum. My bite seems normal, there's no weird placement of my jaw when my mouth is closed, it just pops audibly and it's uncomfortable!In addition to this I have a clicking sound in my ears when I swallow that comes and goes. Have you gotten another opinion from a different surgeon? I would if you haven't...I would say that he didn't help you much! How frequently are you having these episodes now? Have you had your fasting glucose tested? DOM
    acuann 3,080 Replies Flag this Response
  • I only saw that one surgeon, but I have an appointment with a neurologist on April 2nd, maybe they will point me in the right direction. I've had a full blood panel done multiple times, it always comes up normal. My episodes are daily and are also starting to be triggered by very light strain, but mostly are near-syncopal (I get dizzy and light-headed but I don't lose consciousness.)
    SyncopalGal 10 Replies Flag this Response
  • Come on, Blaze, Tootsie and GivenUp - you are ALL acting like spoiled little children...and none of this stupid bickering is helping ANYONE!!! Enough!!! DOMYour right Dom......its not right ! wont happen again, not by me anyway !:o:)
    Tootsie 628 Replies Flag this Response
  • A family friend was recently diagnosed with postural orthostatic tachycardia syndrome (POTS). She would continually pass out/loose consciousness, along with other symptoms of having anxiety, and continually feeling sick. I don't know if you have ever looked into this syndrome, it might be worth your time to look into this syndrome. The whole loosing consciousness thing reminded my of this syndrome.
    slouisias 3 Replies Flag this Response
  • Come on, Blaze, Tootsie and GivenUp - you are ALL acting like spoiled little children...and none of this stupid bickering is helping ANYONE!!! Enough!!! DOM Your right Dom......its not right ! wont happen again, not by me anyway !:o:) remember in my thread we said we wouldnt do it again, stick with it! (i have lol, have not said a word to blaze since) and as far as i know you have been good to, candy to both of us!
    GivenUp 135 Replies Flag this Response
  • This test will find anything wrong with your heart that all of the other tests can't. You might have to pay out of your pocket, however, but it is well worth it. Do a search in your area and see where it is given closest to you:Electron beam tomography angiography (ebta)
    Monsterlove 2,921 Replies Flag this Response
  • It sounds like you may have some kind of neurological problem. Did they test for anything besides epilepsy? This problem could also be caused by a fungal infection. I have a very serious fungal infection that has caused me to have epilepsy, cognitive failure, and a heart condition. I also have a tumor in my abdomal cavity and I have every symptom of Non-Hodgkins Lymphoma. You can test for a fungal infection by spitting into a glass of water as soon as you get up in the morning before you put anything in your mouth. If there is any of the saliva floating down in the water within an hour then you have a fungal infection. The faster the saliva begins to fall the worse the fungal infection is. When I first tested about 2 years ago mine started in about 2 seconds. I take DMSO and it is helping with all of my problems. Before I started taking the DMSO I was having multiple seizures every day, even though I was on medication, I did not even know my own name, the tumor in my abdominal cavity was the size of a bowling ball, the doctor said I would never get my mind back, and everyone thought I was going to die and my family was starting to talk about my funeral. I was only 22 at the time. My Dad found out about DMSO on the internet and bought a bottle at a health food store. I started taking 1 tsp a day miked in a glass of water and within 1 week the seizures were gone, I was getting my mind back, and I took myself off of the seizure medication. Within 2 months The tumor in my abdominal cavity shrunk 50%. I went back to work and had to cut way down on my dosage of the DMSO because it has a smell like garlic. After about six months the seizures came back, the tumor started growing again, and I started loosing my mind again. I finally had to quit my job in December. The seizures have greatly reduced again and my memory and cognintve abillities are rapidly geting better. DMSO might help you with the dizzyness and spasms. I have these symptoms with the epilepsy, and the DMSO stops them. You can find DMSO in some health food stores and you can order it in bulk from DMSO Marketing INC. 1800-367-6935 You can find out more about DMSO from http://www.dmso.org/articles/information/muir.htm If you have a fungal infection you want to get some Three Lack. It is the best thing I have found for fungal infections, but it is expensive. it costs about $50 a box and if you take the recommended dosage you need to buy 3 boxes a month. This is the only reason I do not take it any more I cannot aford it. When I was taking it for a few weeks I could tell that it was really working. The cheepest place I have found Three Lack is at this E-Bay storehttp://stores.ebay.com/Good-Day-Solutions_W0QQssPageNameZstrkQ3amefsQ3amesstQQtZkmYou can get 1 box for 47.95 + shipping. I hope this helps you.Desiree Jordan
    desiree1984 4 Replies Flag this Response
  • It sounds like you may have some kind of neurological problem. Did they test for anything besides epilepsy? This problem could also be caused by a fungal infection. I have a very serious fungal infection that has caused me to have epilepsy, cognitive failure, and a heart condition. I also have a tumor in my abdomal cavity and I have every symptom of Non-Hodgkins Lymphoma. You can test for a fungal infection by spitting into a glass of water as soon as you get up in the morning before you put anything in your mouth. If there is any of the saliva floating down in the water within an hour then you have a fungal infection. The faster the saliva begins to fall the worse the fungal infection is. When I first tested about 2 years ago mine started in about 2 seconds. I take DMSO and it is helping with all of my problems. Before I started taking the DMSO I was having multiple seizures every day, even though I was on medication, I did not even know my own name, the tumor in my abdominal cavity was the size of a bowling ball, the doctor said I would never get my mind back, and everyone thought I was going to die and my family was starting to talk about my funeral. I was only 22 at the time. My Dad found out about DMSO on the internet and bought a bottle at a health food store. I started taking 1 tsp a day miked in a glass of water and within 1 week the seizures were gone, I was getting my mind back, and I took myself off of the seizure medication. Within 2 months The tumor in my abdominal cavity shrunk 50%. I went back to work and had to cut way down on my dosage of the DMSO because it has a smell like garlic. After about six months the seizures came back, the tumor started growing again, and I started loosing my mind again. I finally had to quit my job in December. The seizures have greatly reduced again and my memory and cognintve abillities are rapidly geting better. DMSO might help you with the dizzyness and spasms. I have these symptoms with the epilepsy, and the DMSO stops them. You can find DMSO in some health food stores and you can order it in bulk from DMSO Marketing INC. 1800-367-6935 You can find out more about DMSO from http://www.dmso.org/articles/information/muir.htm If you have a fungal infection you want to get some Three Lack. It is the best thing I have found for fungal infections, but it is expensive. it costs about $50 a box and if you take the recommended dosage you need to buy 3 boxes a month. This is the only reason I do not take it any more I cannot aford it. When I was taking it for a few weeks I could tell that it was really working. I hope this helps you.Desiree Jordan
    desiree1984 4 Replies Flag this Response
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