Discussions By Condition: I cannot get a diagnosis.

Too Many Years and Tests Later and Still No Answer

Posted In: I cannot get a diagnosis. 8 Replies
  • Posted By: kms1383
  • June 9, 2010
  • 03:10 PM

:confused:Since I was 12 I have suffered through too many fainting attacks. I first get real hot and sweaty, my vision turns grey, and then my heart starts beating erratically. If I don't sit down that very moment, I will pass out. I take iron tablets for low anemia and other wise suffer from optical migraines which have been becoming more frequent. My face has been going numb so often lately and tingles. I am active and healthy otherwise besides ovarian cyst ruptures which happen monthly and are very painful. I am a teacher and on my feet all day.

Blood tests have come back normal and a CT Exam and EEG test have both come back normal as well. I am tired of this going on and doctors shrugging their shoulders. Any ideas???? This interrupts my daily routine. Some days I can not function to the point where I can not actively move even two steps without sitting down. I have two kids to care for beyond my job and I can't take it anymore. Help!

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8 Replies:

  • I think you should see a cardiologist and get whatever tests he/she suggest. I once saw a cardiologist for my faints and he did a heap of tests not just an EEG (eg exercise stress test and others as well). im wondering if you find anything can trigger this more for you?? eg showering, warm weather, after eatting, only happens when standing or up on feet??? etc.. Im asking for more info as it could be something like POTS (postural orthostatic tachycardia syndrome) but you havent said anything other than faints which could point to that. If it was something like POTS (a form of dysautonomina).. that is something heart specialist probably wouldnt diagnose as POTS isnt a heart problem as such (thou it does affect heart beat!! and causes bouts of tachycardia) but rather an issue with the autonomic nervious system and how it regulates everything. (Heart specialist missed diagnosing POTS in me.. tilt table testing or other monitoring is needed for POTS diagnoses and heart specialist didnt do that testing). but i do think you should have more testing done to make sure it isnt your heart.
    taniaaust1 2267 Replies Flag this Response
  • After looking into the POTS as you stated it certainly sounds a lot like what I am facing. When anyone mentions my heart I cringe because I simply don't feel I have anything wrong there, however I am willing to undergo testing to rule it out. Do you actually have the POTS yourself? It can come at any time, from standing up, to just moving, just standing stationary, and at times its bad even that its affecting me even while I am lying down. I do feel as though I am not getting enough oxygen at that time and usually end up cringing with a headache alike to a "brain freeze." Thank you for your advise and suggestion, I will certainly look into it.:) I think you should see a cardiologist and get whatever tests he/she suggest. I once saw a cardiologist for my faints and he did a heap of tests not just an EEG (eg exercise stress test and others as well). im wondering if you find anything can trigger this more for you?? eg showering, warm weather, after eatting, only happens when standing or up on feet??? etc.. Im asking for more info as it could be something like POTS (postural orthostatic tachycardia syndrome) but you havent said anything other than faints which could point to that. If it was something like POTS (a form of dysautonomina).. that is something heart specialist probably wouldnt diagnose as POTS isnt a heart problem as such (thou it does affect heart beat!! and causes bouts of tachycardia) but rather an issue with the autonomic nervious system and how it regulates everything. (Heart specialist missed diagnosing POTS in me.. tilt table testing or other monitoring is needed for POTS diagnoses and heart specialist didnt do that testing). but i do think you should have more testing done to make sure it isnt your heart.
    kms1383 2 Replies Flag this Response
  • Check into orthostatic hypotension too. A cardiologist can run a stress test and/ or provide you with a heart monitor. Orthostatic hypotension is a combination of episodes of tachycardia arrhythmia with rapid drops in blood pressure. I've been on meds for it for 6 years. The meds have helped a TON.
    wildmonkeys1 14 Replies Flag this Response
  • After looking into the POTS as you stated it certainly sounds a lot like what I am facing. When anyone mentions my heart I cringe because I simply don't feel I have anything wrong there, however I am willing to undergo testing to rule it out. Do you actually have the POTS yourself? It can come at any time, from standing up, to just moving, just standing stationary, and at times its bad even that its affecting me even while I am lying down. I do feel as though I am not getting enough oxygen at that time and usually end up cringing with a headache alike to a "brain freeze." Thank you for your advise and suggestion, I will certainly look into it.:) Yes.. i have POTS myself but in my case it is part of another condition. You can get your doctor to send you for "tilt table testing" to get POTS diagnosed or yourself do what they call the poor mans test :P as POTS can be just diagnosed by heart rate. When you first wake up, take your heart rate while still laying in bed before you get up and go moving about to much, then stand and take it again, then remain standing while doing the following, take heart rate at 1 min, then 5 mins then 10 mins. If it increases from your laying heart rate by 30 beats a minute or goes over 120 beats per minute while just standing you do have POTS. (if it doesnt.. you should be able to count out POTS being the issue). http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome
    taniaaust1 2267 Replies Flag this Response
  • Check out http://www.potsinfo.com to see videos of others with POTS as they discribe their symptoms. It also has links to other sites with info on POTS. The key is the "tilt table test". That is the diagnositc test. POTS is not a defect in the heart, but the brain not telling the veins to contract so that the brain has enough blood. Instead the blood goes to the legs and stomach and the heart does not have enough. That is why Fluids, Salt, and Potasium are so important. It also messes up all the other tasks for other organs such as Thyroid where because they do not have the right blood flowing through them, they display erattic test results on blood work - one time being high and the next low.
    Anonymous 42789 Replies Flag this Response
  • :) I just want to thank you all for your helpful information and links. I did a lot of research and spoke with my doctor and have a referral now to seek more help and get a 'tilt table' test. My heart rate does exceed 125 beats upon standing on a GOOD day, and up to 140 and more when I am having a bad day. I feel like this could be the answer and it's such a relief to know this could be a cause instead of not knowing. Again thank you! For those of you that have the POTS, how long and how difficult was it for you to find the right medication for you? Did you suffer through numerous side effects? I was reading about the different medications used which is also of course dependent upon your health as a whole, and read about some people having bad reactions.
    kms1383 2 Replies Flag this Response
  • :) I just want to thank you all for your helpful information and links. I did a lot of research and spoke with my doctor and have a referral now to seek more help and get a 'tilt table' test. My heart rate does exceed 125 beats upon standing on a GOOD day, and up to 140 and more when I am having a bad day. I feel like this could be the answer and it's such a relief to know this could be a cause instead of not knowing. Again thank you! For those of you that have the POTS, how long and how difficult was it for you to find the right medication for you? Did you suffer through numerous side effects? I was reading about the different medications used which is also of course dependent upon your health as a whole, and read about some people having bad reactions. For myself i have it part of another condition so even if POTS is fixed, it wouldnt have me well enough to be working anyway, i'd still be stuck on disability allowance. (i have the POTS with CFIDS and on top of that, also have mental health issues and other issues). i arent on medication for it as im very sensitive to meds (i also have mutiple chemical sensitivity) and just havent as yet been game to try meds for it. POTS can be helped in many different ways, meds arent the ONLY way to get the POTS in control. i have the POTS in control (i havent gone actually unconscious now for about 2 yrs, thou still do collapse from it at times) by avoiding the things i know set it off eg do not exercise on a hot day!, exercise at night when its cold instead. To exercise, i was going out running at night actually wearing wet clothes as as long as i keep cool and kept stopping and resting, im capable of "some" exercise. Another thing which can help greatly is to keep your fluids up!!!. i can stop the POTS dizziness and POTS headaches and that sudden POTS exhaustion and weakness which happens when im up doing things, (as long as i dont get too warm) by what i call fluid loading. i will drink nearly a litre (4 cups) before going out anywhere to prepare my body for being up on my feet. Take a drink bottle with me and will be drinking about 750ml (3 cups) per every 1-2 hrs. By doing this.. and the heat avoidance, i can avoid POTS affecting me, (but if i forget to drink.. it ends up hitting me and i'll then need to lay down as i'll collapse). Due to the amount one needs to drink.. one needs to be drinking an electrolite solution or sports drinks as otherwise one can misbalance electrolites in body from too much water which is a dangerous life threatening situation. ive spend the past two days out without the POTS affecting :) (the only annoyance is that i need to pee every hr!! due to all the drinking) I dont know if it's the case for all POTS or not but POTS in CFIDS is often thought to be caused by low blood?? fluid volume in body ..studies have found we have up to 50% of normal levels (unfortunately it isnt a test which is usualy done.. as far as i know only scienctific labs measure blood volume of body). So maybe that is why the fluid loading works so well for many with POTS. (others with severe POTS get a litre of saline solution into a vein daily to boost fluid volume and that apparently works well.. but we must just pee out the excess fluid we get, as we soon, 24 hrs later are back to how we were). But severe constantly bedbound POTS patients can end up actually being able to live a life with the daily saline drips. (when i was severe a doctor was going to trial this with me but we never got around to it)........... If anyone with severe POTS reads this.. in which it can also affect when one is laying down. i myself found when my POTS was that severe that i could sleep without dizziness by having the leg end of my bed raised a little. (thank God i havent been that bad for ages!!). To the thread poster. Just experiement with different things, till you work out what helps. Eg if you have to.. if showering sets off, shower while sitting in shower seat rather than standing or shower in a bit cooler water. Just changing the way you do things can end up helping a lot.
    taniaaust1 2267 Replies Flag this Response
  • i forgot to mention salt. Adding extra salt to diet (due to the low fluid in body thing..salt draws more fluid to the blood) can help some many with POTS, some take salt tablets. My doctor just told me to add more salt. (many POTS patients crave salt, go with the craving unless you suffer from high BP). try adding salt and added fluids.. to see if increasing blood fluid helps. You can use the lesson time class changes, if you are teaching different classes during the day to be running back and forth to toilet.......... i suggest you alter the way you do things at work as much as possible.. eg instead of using a black board with chalk maybe you can use one of those projectors and put your lectures on those plastic sheets to project to a white screen.. so you dont have to stand much. You can use lazer light as a pointer rather than a stick. (i know there is teachers in wheel chairs, they manage to teach without standing so it can be done. i had a high school teacher who had polio as a child who was disabled due to it.. Hoping you arent a PE teacher thou :P ).
    taniaaust1 2267 Replies Flag this Response
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