Discussions By Condition: I cannot get a diagnosis.

Fainting.. my life is not the same

Posted In: I cannot get a diagnosis. 17 Replies
  • Posted By: nettyaa
  • August 2, 2007
  • 03:56 PM

About a year ago I started fainting out of no where. After the first couple of times I thought it was just bc of the medicine I was on which is Adderall. I told my doctor and she determined that I was on too low of a dose for too long of a time for adderall to be affecting me that way. Then after a few months, I just seemed to get worse. I felt fatigued all the time, pain was shooting up and down my legs, my back and my face. The ringing in my ears was absolutely unbearable. I would faint suddenly; my body posisition didn't seem to matter. I could be laying down and I still faint. I have been to numerous specialists. I had an MRI done which showed small lesions of white matter which my doctor said could be caused from migraines. (i've never had a migraine before and headaches are not an ongoing symptom for me) I saw an endocrinologist who gave me a cortisol test, it came back normal. I saw a neurologist who said I have social anxiety disorder and fainting is bc I am panicking, I just laughed in his face after that crazy diagnosis. And then there was the ENT doc who said I had TMJ even though I have not one single problem with my jaw. After all these ridiculous diagnosis I am frustrated. I had a tilt table test done which came back positive for Vasovagal syncope. This helped, but still didn't explain the other symptoms and gave me no solution to end my pain.
At this present day, I cannot work or walk for more than 10 minutes. At night I have stabbing pain in my lower back and legs along with terrible ringing in my ears. I have been fainting less but it seems now when I do faint its much more severe. My heart pounds at first and I take deep breaths but then my heart seems to slow down too much and I feel like I'm drowning. (which is a new symptom)
I am always tired, my feet always feel numb and tingly, the pain in my legs grows everyday, I am sick of fainting. I feel useless and I feel that doctors are useless. I just want my old life and my old body back. If you can offer ANY insight at all into my illness, please help.

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17 Replies:

  • heyi was diagnosed with vasovagal syncope about 6 years ago..i have not fainted in about 4 years, but i am very lightheaded about 90% of the day. i have pain in my back as well but mine is in the morning..i also have pain in my legs and feet but it feels more like the are on fire. i am also always tired. i brought this up to the cardiologist and he keeps saying that people with vasovagal sycope have problems retaining fluids so body i constantly on the verge of dehydration...he recomended taking salt tablets(to help retain fluids), cut out cafffine and drink alot of water(double normal amount recommened)..i have tried to do all this but doesnt seem to really help...i know this really didnt give you any answers, but maybe it gives you comfort that you are not the only one, and your not crazy like all my doctors seem to think i am...do you have any other symptoms becasue shortly after i started fainting i devolped alot of other things, but not sure if related.
    Anonymous 42789 Replies Flag this Response
  • Drink Gatorade on the way to the cardiologist's office where you should be fitted for a Holter monitor study which will record you heart rate and rhythm for 24 hours. Don't ever get dehydrated. What happens to your pulse (heart rate), and your blood pressure when you have a vasovagal syncope attack? have someone check for you. This syncope can be a symptom of many diseases.
    rad-skw 1605 Replies Flag this Response
  • Sore throat, chills, sweats, low body temperature, low grade fever, lymphadenopathy, muscle weakness (or paralysis), muscle pain, muscle twitches or spasms, gelling of the joints, hypoglycaemia, hair loss, nausea, vomiting, vertigo, chest pain, cardiac arrhythmia, resting tachycardia, orthostatic tachycardia, orthostatic fainting or faintness, circulatory problems, opthalmoplegia, eye pain, photophobia, blurred vision, wavy visual field, and other visual and neurological disturbances, hyperacuity, t innitus, alcohol intolerance, gastrointestinal and digestive disturbances, allergies and sensitivities to many previously well-tolerated foods, drug sensitivities, stroke-like episodes, nystagmus, difficulty swallowing, weight changes, paresthesias, polyneuropathy, proprioception difficulties, myoclonus, temporal lobe and other types of seizures, an inability to maintain consciousness for more than short periods at a time, confusion, disorientation, spatial disorientation, disequilibrium, breathing difficulties, emotional lability, sleep disorders; sleep paralysis, fragmented sleep, difficulty initiating sleep, lack of deep-stage sleep and/or a disrupted circadian rhythm. Neurocognitive dysfunction may include cognitive, motor and perceptual disturbances. Cognitive dysfunction may be pronounced and may include; difficulty or an inability to speak (or understand speech), difficulty or an inability to read or write or to do basic mathematics, difficulty with simultaneous processing, poor concentration, difficulty with sequencing and problems with memory including; difficulty making new memories, difficulty recalling formed memories and difficulties with visual and verbal recall (eg. facial agnosia). fatigue, numbness tingling of extremeties Above is a list of some symptoms of CFS/ME You may want to visit www.ahummingbirdsguide.com as there is alot of helpful information on that site. You may be having more symptoms than the ones highlighted in red...I know I had symptoms that I didn't even realize were symptoms until I was diagnosed and did more research.I wish you well....mommy cat
    mommy cat 1654 Replies Flag this Response
  • heyi was diagnosed with vasovagal syncope about 6 years ago..i have not fainted in about 4 years, but i am very lightheaded about 90% of the day. i have pain in my back as well but mine is in the morning..i also have pain in my legs and feet but it feels more like the are on fire. i am also always tired. i brought this up to the cardiologist and he keeps saying that people with vasovagal sycope have problems retaining fluids so body i constantly on the verge of dehydration...he recomended taking salt tablets(to help retain fluids), cut out cafffine and drink alot of water(double normal amount recommened)..i have tried to do all this but doesnt seem to really help...i know this really didnt give you any answers, but maybe it gives you comfort that you are not the only one, and your not crazy like all my doctors seem to think i am...do you have any other symptoms becasue shortly after i started fainting i devolped alot of other things, but not sure if related.At the beginning of my symptoms my doctor thought I could have menieres disease so she recommended increasing salt intake, drinking more fluids and no caffeine or chocolate. Being that I am on Adderall, which already dehydrates me, I drink a six pack of 20oz. water bottles everday plus gatorade. All the food I eat is high in sodium and I take a multivitamin everyday. I have many other symptoms, one of my more recent symptoms has been a stabbing pain in my left side just below my ribs. It comes and goes, it doesn't seem to come with anything specific (like foods i eat or activities). I have gone to the hospital a few times with extreme muscle pain in my arms and back. Each time I was hospitalized, blood tests showed that I had low potassium. I'm not sure if that has anything to do with muscle pain.
    nettyaa 12 Replies Flag this Response
  • Drink Gatorade on the way to the cardiologist's office where you should be fitted for a Holter monitor study which will record you heart rate and rhythm for 24 hours. Don't ever get dehydrated. What happens to your pulse (heart rate), and your blood pressure when you have a vasovagal syncope attack? have someone check for you. This syncope can be a symptom of many diseases.My tilt table test showed that when I fainted my blood pressure dropped to 54/33 and heart rate raised to 132 bpm. It took about 20 minutes for my vitals to stabilize.
    nettyaa 12 Replies Flag this Response
  • yes, my tilt table test revealed bp of 60/42 when I fainted and heart rate of 144. I know how you feel. Hope you are feeling better soon...mc
    mommy cat 1654 Replies Flag this Response
  • yes, my tilt table test revealed bp of 60/42 when I fainted and heart rate of 144. I know how you feel. Hope you are feeling better soon...mcAs per the link you posted, did you have any specific tests done for this disease?
    nettyaa 12 Replies Flag this Response
  • If you visit www.ahummingbirdsguide.com there is a page degignated to testing. It is titled...testing for ME. You will see that link on the L side of the home page. There are a lot of tests from brain scans to immune bloodwork and more. Best to you...mc:)
    mommy cat 1654 Replies Flag this Response
  • If you visit www.ahummingbirdsguide.com there is a page degignated to testing. It is titled...testing for ME. You will see that link on the L side of the home page. There are a lot of tests from brain scans to immune bloodwork and more. Best to you...mc:)Thanks so much, I'm def. going to talk to my doc ASAP about this. I read the site a million times over and all the symptoms listed are exactly like mine. But is there really nothing that can be done for it? Is resting all that you can do to help the disease? If I have this, then I am seriously worried bc resting is all I do and nothing ever seems to get better.
    nettyaa 12 Replies Flag this Response
  • dear nettyaa...I just found the info myself in April. The hummingbird site calls this ME...the USA calls it CFS. Chronic Fatigue Syndrome. Google info on it...there is a lot of it.The best advice I can give is the same advice someone in this forum gave me a while back...FIND NAET OR BIOSET THERAPY...It is a form of accupressure which works. Accupressure has been used for millenia, because it works. I am a nurse and I would have never believed it would work.Please know that the doctors can only give you a diagnosis and some meds to "mask" your symptoms. This therapy cuts to the chase and gets to the "root" of the problems. I am going back to work for the first time in a long time after having attended only 5 of these sessions. You won't believe it.There is also other information to help...like drink lots of fresh water with squeezed lemonuse sea saltTake a daily multivitaminTake Vitamin C and ZincHave B12 and folate levels checked and supplement accordinglyagain...this is all advice I have been given or have read about. I am not a doctor but I do recognize these symptoms when seen.I hope you are feeling better soon....don't forget the water...mommy cat:)
    mommy cat 1654 Replies Flag this Response
  • Don't trust Mommy Cat. She tells everyone that they have ME. If you look closely at the humingbird webpage, every symptom that you couldpossibly get from any disease is listed. Don't suggest these illnesses to your doc because he will look at you like you are nuts. I had to switch docs back in May because Mommy Cat told me I had CFS, and my doc toldme to get on antidepressants and talkto a therapist. Look at some of the other people on this site, she tells them all they have CFS and she sends the same info to all of them. I think that she gets money to promote the website.
    Anonymous 42789 Replies Flag this Response
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  • The M.E. and CFS does sound a lot like my problem, but I did some research on it and it is a very vague disease that has little research behind it. I talked to my mom about this (who is a nurse) and she told me to bring it up to my doctor but it is very unlikely that I have this. There are more things I would like to add about my illness, in hopes that I may be able to get more insight and advice. I was diagnosed with HPV a few years ago and I had surgery to remove half of my cervix because the cells were in a precancerous stage. I have been to the gyno and told him of my present symptoms and he says that it has nothing to do with my HPV because everything checked out okay. Also, about a year and a half ago I was beaten up numerous times all of which were blows to my head;one time resulted in a concussion and 11 stitches to my lip and blood in my sinuses. The laceration to my lip became severely infected and my stitches had to be taken out early. Another time, I had lost my hearing in my left ear from multiple hits to the head, I was on steroids and my hearing returned but not fully.Could this have anything to do with my symptoms? Or are there any diseases that can be caused by this?
    nettyaa 12 Replies Flag this Response
  • Another symptom I just remembered I had was skin rashes, which come and go. One was little red spots all over my body that were slighly itchy and somewhat painful, it lasts for about a week. The other rash was yellow patches all over my body. Mostly on my hands and feet. This lasted for about 5 months then went away.
    nettyaa 12 Replies Flag this Response
  • Don't trust Mommy Cat. She tells everyone that they have ME. If you look closely at the humingbird webpage, every symptom that you couldpossibly get from any disease is listed. Don't suggest these illnesses to your doc because he will look at you like you are nuts. I had to switch docs back in May because Mommy Cat told me I had CFS, and my doc toldme to get on antidepressants and talkto a therapist. Look at some of the other people on this site, she tells them all they have CFS and she sends the same info to all of them. I think that she gets money to promote the website.I met Mommy Cat way back when she first came here. My doctors had all told me how I was depressed and needed sleeping pills and to chill- when I was truly sick with 'restless leg syndrome' ALL OVER ALL THE TIME- I found NAET and I asked MC to try it- because it solved all my CFS, Immune Dysfunction and Neurological problems.I had over 20 symptoms when I first started NAET. Now I have none.Please give NAET a chance.MC also tried and she recovered a lot! So even if she sees it all as one big blanket that covers all of these symptoms, we are not really far from the remedies. We are getting better- there most be something we are doing right.Best.Frui.
    Eatafruit78 960 Replies Flag this Response
  • nettyaa...unregistered from above would like you to believe that CFS is not real...as they put it......it contains too many symptoms...HOW RIDICULOUS!!! I too had HPV...and cryotherapy on my cervix for precancerous cells.I am a nurse, like your mom.The world calls this disease ME...the USA just changed the name from CFS to ME/CFS. More and more doctors are realizing, infact, that this is a real disease. Do yourself a favor...mention it to your doc...at least have him rule it out as a possibility. Unregistered from above says her doc ruled it out as a possibility...I'm wondering how.Stay well and I wish you the best...mommy cat
    mommy cat 1654 Replies Flag this Response
  • nettyaa...unregistered from above would like you to believe that CFS is not real...as they put it......it contains too many symptoms...HOW RIDICULOUS!!! I too had HPV...and cryotherapy on my cervix for precancerous cells.I am a nurse, like your mom.The world calls this disease ME...the USA just changed the name from CFS to ME/CFS. More and more doctors are realizing, infact, that this is a real disease. Do yourself a favor...mention it to your doc...at least have him rule it out as a possibility. Unregistered from above says her doc ruled it out as a possibility...I'm wondering how.Stay well and I wish you the best...mommy catI am still going to bring it up to my doctor and request that I have certain tests done; like the ones listed on the site you provided. Maybe the tests will help in ruling things out or perhaps find something.
    nettyaa 12 Replies Flag this Response
  • I printed the symptoms page of the hummingbird site and highlighted all of mine.....I had over 70....No wonder they send people with CFS/ME to the psychiatrist....There is no way all those symptoms could be in one person....yeah, right.This is for real...it is not "in your head"There is alot of good advice out there for people with this illness. The best information/help I found was the NAET/Bioset therapy.Hope you find your answers soon...not knowing, was always the worst part for me!!God Bless....mommy cat:)
    mommy cat 1654 Replies Flag this Response
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