December 23, 2012 at 10:32 pm #370cortneylynnParticipant
My name is cortney I’m 25 years old I have a 3 year old daughter I’m a single parent I’m 5″5 I weigh 110lbs iv been sick for over ten years since 15 years old… iv been told I was crazy most of my life even by my own family. I isolated myself for years not ever knowing what to do or were to turn no one would listen to me. I was scared as time went my symptoms would come an go I ignored them when I could an when I couldn’t I would just hide them the best I new how. I couldn’t really hold a job an this made ppl think I was lazy or just rebellious. But I wasn’t I wanted to do good, but I couldn’t function. I dropped out of school at 16 an never looked back do to being ill, but family an staff just looked at me as a bad kid with no ambition . I would sit in my room at night alone thinking I was going to die. I new in my head an heart I wasn’t crazy I new something was wrong with me. I was so sad no one would listen to me. Not until one day i finally was about to just give up. Suicidal thoughts ran thorough my head if they can’t fix me an won’t listen what is the point I don’t want to live like this anymore…. But soon after I was thinking this way I found out I was pregnant, I was scared, very scared, I choose abortion but last min opted out an ran an never looked back at that option… But I have to say this is what saved my life… I felt ok while I was pregnant still dizzy fast hear rate etc. but decent. After my daughter was born I was bed bound but still hide everything the best I could…. I had very bad post pardon depression an I didn’t even no if I was ever going to be able to be a mom. But I pulled through still keeping everything a secret never telling anyone how I felt, not knowing it was normal to feel the way I did after having a baby. This all passed an as time went by I got sicker but fell more in love with my daughter then I ever thought was possible. Finally when my daughter turned a year old i had enough I needed help I begged an pleaded with doctors to please find out why I was having so many symptoms I was telling them I could not function an I can barely take care of my daughter they all turned there backs on me… I cried many nights praying to a god I wasn’t sure I believed in anymore. Again scared an alone I just isolated myself. I finally made an appointment with my primary an told him please just listen to my heart when I stand up that’s all an just tell me if this is normal he did my heart went from 80 to 160 within a few seconds he looked at me very confused an asked me how long has this been happening I told him for as long as I new the heart was an important part or living. He sent me to a cardiologist I had a tilt table test done witch I failed they called what I had pots syndrome…. Hummm what is that I thought well sure enough I looked it up I had every symptom of this an thought ok good relief well cardio went on to do an echocardiogram told me that was fine but I do know there is some minor things going on that they found on the echo but my cardio reassured me that it’s nothing to worry bout. 🙁 so now what salt an water that’s all ok I did that nothing helps. There has to be more I want to know why, why is my body doing this. I had more test done symptoms by symptom I found out I had asthma, iron deficiency, a ferritin of zero but doctor says I’m not anemic, pelvic congestion syndrome, slight scoliosis in my neck, vitamin d deficiency, etc. But doctors say none of these things are causing my symptoms there just things they have found looking for other things, the pots causing all my symptoms maybe but why. No one in my family has this, there giving up on me again (doctors) they don’t want to test anymore but I want to feel better I don’t want to be this person I have become. It’s taken its toll an it much more then I can bare. My symptoms are as follows, brain fog, numbness pain tingling feeling of detachment in my left arm, trouble breathing, trouble sleeping, heart skips gallops palpitations in my neck that last for 10 hours at a time, heart rate over 130 standing, lightheadedness dizziness off balance, restless leg syndrome, weird wave like noise in my ears followed by complete deafness in one ear almost to a black out stage then it’s gone an back to normal, acne, cold sores, mood swings, panic attacks, fatigue, electric shock through body for a second then it goes away, pain in my shins an ankles, there’s more but I can’t think of everything those are the things that happen daily the dizziness almost fainting lightheadedness, heart skips, fast heart rate standing chest pain, trouble breathing, are the most debilitating of all… They also scare me half to death… My symptoms used to coke an go an we’re not as severe but now they have coke an don’t go ever, for three years they have juts stayed…. I’m petrified that I will never get to live or be happy. Or that death is very close. I’m sad that I can’t do all the things I wanna do with my daughter or with my friends, I’m single because I can’t stand ppl not understanding me…. I need help please help me….
Sent from my HTC One™ X, an AT&T 4G LTE smartphoneDecember 24, 2012 at 9:02 pm #3238BarbaraParticipant
Many of us have experienced the symptoms you have had to suffer. I know well the ankle and shin pain, the fast heart-rate, the chest and breathing issues and I too was put on the non-pharmacological treatment for POTS (i.e salt, more fluids, support stockings, etc).
Tell me, have you ever had an MRI of your head and neck because I think that would be interesting, I think it would show maybe problems with a flattened pituitary and several other issues common to many of us. You may benefit from sleeping in a rigid collar (I prefer the Philadelphia collar) as this will help maintain a better flow of your Cerebro Spinal Fluid during the night, which should help alleviate any overnight build up of pressure and help your pituitary to recover.
I would suggest elevating the head of your bed too (if you’re not doing so already) or sleeping sitting up. I feel much better for sleeping sitting up. How well do you sleep ? Have you tried an abdominal binder, to help with the POTS symptoms ? It can help with your posture too, putting less strain on the spinal column.
Try and avoid doing tasks standing up, always find a seated way of carrying out your daily tasks wherever possible and try not to lift things from ground level, get used to putting things on the worktop or a small table, rather than the floor. If you’re working on a computer, make sure you look at the monitor straight ahead, raise it up to eye-level if you can, using a few thick books if necessary. Try and avoid working with your head down (in flexion).
Deficient collagen is a contributing factor for many of us too, so try and increase your vitamin C intake (several small amounts, whilst your eating, is better than one large amount by the way). Vitamin C is necessary to help the body make collagen. Also raw foods, such as a variety of salad items will help build up stores of any minerals lost (we can easily deplete minerals when our autonomic nervous systems aren’t working properly)- but remember to wash it well first, as we don’t want to risk eating any organo-phosphates, as this can affect us badly.
Hope some of this info proves helpful to you. I wish you well, lets hope this is the start of an improved life for you.
NOTE: I eventually tried the abdominal binder – not good for me, it slowed the transition of food through my bowel right down, so I don’t advise this.February 15, 2013 at 6:06 pm #3467Dr. DianaKeymaster
Hi Courtneylynn!! I’m so glad that you found us here! I believe that most of us can relate to all of the symptoms you described, in one form or fashion, unfortunately. The good thing is, we are getting some answers! I’m not sure where you live, but perhaps someone here can steer you towards a good doctor? The videos and handouts on this site are a good start, too. I remember all too well, the feeling of impending death, only to find that by changing ONE thing (Diamox to lower intracranial pressure, lots of magnesium, antihistamines, for example) made me turn the corner almost immediately. Amazing. Don’t lose hope, OK? If you are newly diagnosed, and haven’t even begun to treat your condition (properly), you will likely be SHOCKED at the changes your body is capable of! It is a rare person who doesn’t have an immediate effect from antihistamines such as Zyrtec and Zantac (especially Zyrtec). Magnesium deficiency is rampant with us, too, and if you google ‘symptoms of magnesium deficiency’, you will be shocked. I hope the videos and handouts are helpful for you. Hang in, my new friend. 😉
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