Just Diagnosed

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I'm so glad I found this group! I was diagnosed about 8 years ago with ME/CFS among other things. I saw a doctor, he has also written books about Dysautonomia, he diagnosed me with Syncope Dysautonomia. Still need to get my echo cardiogram done and a few more tests. I'm very confused because I don't faint and occasionally I get dizzy when standing but syncope, I would think would refer to someone that faints often. He described it as driving a car with my foot on the brake as well. Thats basically how my body works. I would love to hear from others with this condition and how you are being treated! Thanks so much!!!

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  • Posted

    Hi! I was diagnosed with POTs(Postural Orthostatic Tachycardia syndrome/Dysautonomia about 3 months ago, having suffered with symptoms for a very long time, I have some of the same symptoms as you, and I'm not a regular fainter either. You probably get what they call 'pre-syncope', where you feel like you're definitely going to faint but you just don't, despite having every symptom and feeling like you are.

    Neurocardiogenic Syncope and POTs are the two most common forms of Dysautonomia. Dysautonomia is an umbrella term for any kind of dysfunction of the Autonomic Newvous System(ANS). Your ANS controls all the things your body does automatically or involuntarily, without your conscious control, for example, heart rate, blood pressure, digestion, respiration, pupil dilation, etc. Your symptoms then indicate what type of Dysautonomia you have. Long story short, I have Dysautonomia too and even though I have a different type, the symptoms are very similar some are even the same, so I know what you're going through!

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    • Posted

      Hi! Thanks for writing back to me! How long did you have symptoms? My doctor was amazed how many doctors I have seen over the years and no one ever diagnosed me with Dysautonomia. I never even feel like I'm going to faint but apparently the test I did...sitting in chair...holding breath while blood pressure and heart rate are monitored...can't remember the name, lol, brain fog and memory are terrible. That test showed syncope. I hope you're feeling better! How are they treating your symptoms? I look forward to hearing from you again, it's always interesting to hear others stories and what they've been through and similarities!

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    • Posted

      Hi again! smile I've had symptoms on and off since I was about 7 years old. (I'm 18 now). Anytime I had the flu, I'd have symptoms but when I recovered from the flu my symptoms disappeared. That doesn't sound too bad but I used to get sick a lot as a kid. However, last August I got symptoms and I assumed I was coming down with the flu again, but the flu never came and the symptoms never left. I went to my GP, told him my symptoms and he immediately suggested POTs, but he wanted me to have a Tilt Table Test to confirm. I had to wait months for the test but I got my diagnosis. I've been referred to another doctor who I'm seeing in September but in the meantime I've been prescribed beta blockers to bring down my heart rate, because it gets crazy high whenever I stand up. I suffer from brain fog too and my memory sucks, so I completely understand!

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    • Posted

      I'm so sorry you were sick so often as a child, that must have been rough! I have a good friend with the same diagnosis as you and she has been trying to get me to see someone for years, I finally did. I have a lot of the symptoms but like I said I don't faint, I never even feel like I'm going to. He said I am always in the fight flight mode??? There is a book I'm going to buy that may help me to understand it better. I actually see Dr. Depace, he and a few others wrote the book, so I'm pretty confident that his diagnosis is accurate. My fatigue is much better now that I'm taking Aderral but like everything else, meds work for me and then they just suddenly stop working? I hope you're feeling better!

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    • Posted

      I had gone to doctors many times over the years but I was always told it was a chest infection or that I was probably dehydrated or that I was getting dizzy because I'm tall!! (I'm 5ft 10, lol it's not that tall!) Anyway I was so happy to finally have a name for this mystery illness. I was put on beta blockers about three/four months ago and I can already see that they're not as effective as they were when I first started them, but my doctor is hesitant to bring up the dosage because my blood pressure drops so low. Hopefully we'll find a solution. Best of luck in the future!

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  • Posted

    Hi kelly

    I have Vasal Vagul syncope, i was born with it, and comes with a varietyof disorders, i have CFS, and irratic blood sugars, and very slow dijestion, in all my years with this condition, i only passed out 4 times, and that was when i was pregnant with my second child, i go to pass out, but as soon as i sit, or, crouch down it passes, so, no  you dont always have to pass out to have it.....................drinking at least 3 litres of water per day, to help bring up blood volume, and, low blood pressure if you have it, will help both of those, there is medication out there, but depends on your specialist, most of the time they prefer you to try lifestyle changes first, unless its having a bad effect on your heart, then they can fit you with a pacemaker, if your dijestion is also that bad, they can put you on steriods, if you have low blood  pressure and low blood volume, you also need to be very liberal with salt on your food, but if your condition is POTS then it will cause high blood pressure then no, do not take in extra salt, without drs say so.

    Staying as cool as you can in the heat will also help, as thats a trigger, large meals can be a trigger, too much sleep, plus too little, mild exercise will help, and cool baths, showers, and swimming will also help, or even a spa bath, period time will affect you, and so will pregnancy, with mine the sympathetic and parasympathetic nervous system are involved which, is in the spine, sympathetic is the flight, or, fight response, so you overproduce adrenaline, so everything in my body then works too fast, thats when i get CFS symptoms and lose large amounts of weight, and go very thirsty due to low blood volume, then i switch to things going way too slow, due to the affects of the parasympathetic nervous system being affected, this response is called the rest and dijest, and happens after the adrenaline has died down, so, then my dijestion is slow, i bloat, feel gassy, get IBS symptoms, and can even vomit my food back up, because i feel full as soon as the first mouthful goes in, this is because, my stomach muslces go weak, and then food  can only get pushed through slowly, also, because the diaphram is  a muscle, when this goes weak, my breathing stops when i try to sleep, very scary!!  .....................good luck with it kelly

     

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    • Posted

      Hi! I just wanted to say that actually if your condition is POTs, like mine is, then actually your doctor would (or should) tell you to increase your salt intake. Increased salt intake increases your fluid retention, which increases blood volume, which yes, increases blood pressure. You could drink loads and loads of fluids but that's no good if you're not taking salt too, because you're body won't retain any of the fluid and it will just flush right through you. Many POTs patients suffer from low blood volume and low blood pressure, so this is why the most common "treatment" is to try and alleviate these symptoms with fluids and salt. Salt is key. I am part of a POTs Facebook group, with +15,000 members and I swear, every other post is about salt! Best of luck with the future ??

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    • Posted

      I just read your post! Thank you for writing me back! You seem like a pro when it comes to this condition. It must be so scary when you stop breathing!!! I just started noticing things that I never really put a whole lot of thought into, which I now know they are part of the Dysautonomia. My stomach problems for one. After eating I feel like someone is kicking me in my stomach and the constipation, I'm taking Miralex and three colaces everyday and still having problems, I'm also very anemic but fearful to take the iron supplements because I know I'm going to have major problems if I do. The fatigue is probably my biggest complaint. I'm having such a hard time functioning, well at the moment the Adderral I'm taking is working do things aren't so bad but like everything else, I know it's just a matter of time before it stops working. Then I will struggle to just get a shower in the morning and having to go to work is absolutely exhausting. Do you struggle with the chronic fatigue? You may have told me and if so I apologize! That's another big problem I have, I feel like people think I'm a total idiot because I can never remember anything and my word retrieval is terrible! Ah...such fun, lol.

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