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About Amber

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    Ontario, Canada
  1. That is a facinating video sue1234. I have Fibro,Pots and herniated/bulging disks in my neck and I always believed there was a connection. My first severe fibro symptoms started after a whiplash injury from a car accident and though I also had Pots symptoms then too, both my fibro and Pots got infinitely worse when my disks began bulging years later. The doc said my MRI showed flattening of the spinal cord but not nearly enough to explain my severe pain etc. I always believed it was the position of my neck for the test that made it look not so bad. Lets face it, in real life we don't hold
  2. heiseygirl, I have a link to a great article on variant (vasospastic) angina that might be helpful to you. Its not specific to those with POTS but it may help you figure out if it sounds like what you are experiencing. Maybe you can take it to your doc to see if he can try any of the diagnostic tests mentioned in the article. Thats what I'm going to do with my doc. http://cmbi.bjmu.edu.cn/uptodate/coronary%20heart%20disease/pathophysiology/variant%20angina.htm hope that link works and that it helps give you an answer too. 8 ) amber
  3. Hi! I'm pretty sure that I've been experiencing vasospastic angina for the past year. My docs recognise that I'm having angina but they can't figure out (or agree) on why, since my coronary arteries showed up normal on a chemical stress test. The docs have never mentioned Vaso. angina but from what I've read it describes me pretty well...not sure why they didn't think of it. Im waiting on another appointment to request further investigation but I want to go in with as much knowledge as possible about it and how it relates with my POTS. I know that there are at least a few on this forum wit
  4. Thanks Yuliya! Sorry to hear that you experience the same thing. I guess whats throwing me off is that is doesn't FEEL like POTS to me. I am used to potsy days where I can't even sit up because of faintness but these new episodes feel more like I'm going to pass out due to pain, and constriction in the chest and shortness of breath. Like suddenly my heart has just stopped in my chest.....its a horrible feeling and one that I never really thought was a POTS thing..... I guess we learn as we go... 8 ) thanks
  5. I am so frustrated!! I have had pots for most of my life but was only diagnosed in 2008. I think it took so long because I also have mitral valve prolapse, CFS and Fibrbomyalgia and there was so much overlap in symptoms. Anyway I have been on BB and midodrine since then and was managing the daily dizziness, near-syncope etc. I could walk reasonable distances, like the mall, although slowly. Then suddenly last february I began having severe episodes of shortness of breath and chest pain/squeezing follwed by syncope whenever I exerted myself even a little. I often feel ike I am being strangl
  6. I can relate to the not sleeping thing. I have CFS and have found that I get insomnia if I get extremely over-tired....seems like a person would sleep more easily the more tired they are but I have found that the opposite is often true, especially with CFS. I have no real help to offer other than try not to get too over-tired (easier said than done!) and if you can't sleep at least rest as much as you can. Odd as it sounds, sometimes I need to 'rest-up' before I can fall asleep!
  7. Like some of you, when I faint I lose my vision and muscle control and have even seemed to stop breathing BUT i can still hear whats going on around me. I look completely out cold but can tell you what was being said while I was 'out'. I always wondered if it still counts as a faint if you are technically still aware.....
  8. Sorry I can't help with an answer but I sure can sympathize. I have been to the ER 3 times this year for chest pain and shortness of breath. It is worse with exertion...to the point of passing out. It is not like syncope from pots. Its definitly something going on in my chest....it is so tight and squeezing...like a bowling ball on my chest. During some of these times I've also had random tachys up over 160 even laying down and even with large doses of BB. I often feeling like my heart is pounding even up into my throat and head, regardless of whether my hr is fast or not. Sometimes it
  9. My only recommendation is to always take mestinon with food and I don't just mean a cracker or small bite of food. I have found that unless I eat something substantial with my pill, I will get awful cramps and gi trouble. One day it was so bad I was sure I had food poisioning. I do get times where I have excess salivation and also occasional muscle cramping/twitching (but I get those anyway from my fibromyalgia) but its not too bad. One good thing is that my droopy eyelid (that noone has really ever explained the cause of) is no longer drooping on mestinon.
  10. Hmmm... interesting.... I'm not sure if its the same thing but I find that whenever I am in the midst of passing out...I start blubbering and I normally am not a cry-er. I thought maybe it was a bit of a panic response because I know I'm about to fall and can't stop it. Its just a sudden and overwhelming tearfulness. I wonder if crying is controlled by, or affects, the ans and maybe people react differently depending on whether they have too much or too little sympathetic activity.... <---- too tired to decide it that made any sense at all.....hopefully you know what I mean.... we a
  11. I sleep horrilby and never feel rested in the morning....mostly feel like I've been run over by a bus. I wake 10-20 times a night even if its just for a few seconds, sleep very lightly and feel like I dream constantly. No matter if its been 5 minutes since I fell asleep or hours I always wake out of a dream and can remember them vividly most of the time. Honestly its like living another life at night. These dreams are very vivid, active and long and often unpleasant or even horrifying. I also experience sleep paralysis, and hallucintaions when falling asleep or waking sometimes. I have had
  12. I have always heard that when your fingers look shriveled after a bath that its kind of an optical illusion in that your tissues are actually 'water-logged' not dehydrated. The wrinkly parts are a result of the engorgment of the skin. Maybe you're retaining water there due to an electrolyte or circulation issue. Have you been checked for Raynaud's?
  13. In Canada we have a company that (after training) links you to companies that hire people to answer phones for them. It's done from home with some required equipment like a computer and internet connection. It involves taking orders for Pizza delivery or taking ads for the local classifieds but there are also places like auto clubs, insurance companies and rental corporations that do it as well. Basically you are self-employed and offer your services to these companies and they pay on a per call or per hour basis. I've not done it myself yet but was considering it before I got very sick a
  14. Yes it's certainly not a diagnosis by any means.....just an idea to read up on in case you hadn't heard of it.........
  15. Have you ever heard of Intemittent Claudication? It causes leg pain that is worse with walking and involves the calves. I don't know if its related to dysautonomias but it might be something to read up on to see if it matches what you are experiencing.... Here is a quote from one website: What is Intermittent Claudication? Claudication is a term derived from the Latin word meaning "to limp". Intermittent claudication (vascular claudication) describes the pain that develops in the muscles of the legs when taking exercise, such as walking. Commonly, the calf muscles are the most affected, an
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