Diagnosed with dysautonomia/ pots
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I was diagnosed with dyautonimia/ pots/ hypotension over a month ago. My Doctor put e on anxiety medicine, beta blocker and Midodrine to raise my blood pressure. I was given a book to read about mitral valve prolapse and disautonimia. I've done everything recommended in the book; exercise, no caffeine, no sugar, 5-8 grams of sodium daily. It's been almost two months and I still have the dizziness, nausea, anxiety spells, get exhausted so easy. I feel very discouraged about not being able to find a new normal to life. I have. Kids, work full time and have extra curricular activities with the kids. I feel as though I'm dying 24/7 or literally going to come out of my own skin. Does anyone have any suggestions or feelings similar to mine?
0 likes, 3 replies
kenaz kristin11489
Posted
Hi Kristin, I am sorry for your dilema. I am going to be 70 in Nov and have been having varied symptoms of vertigo, sweating without fever, syncopatic episodes, very high hrt rt, blured vision. chronic migraines, high bp, tremors and tenitus. I am a disabled veteran and am at the mercy of VA for treatment. Mayo Clinic ask for authorization to do Tilt Table test over 3 yrs ago, at that time they were doing Botox, Nerve Blocks and Nerve Ablassions for migrain but with multiple symptoms wanted to test tthe Autonomic Nervous system due to tramatic brain injury. VA put in a pace maker 1 1/2 yrs ago but didn't help. I finally got the authorization for the Tilt Table on 10-07 but I haven't been able to get my BP down for the past couple days. I went to the VA clinic this morning and everyone went nuts. My doctor griped me out for not using my Nitro and going to ER. I told her I had been to the ER 3 times in the last yr and they didn't want to see me as I wasn't having a hrt attack. The doctor didn't give me a choice, she called the ambulance and they transported me to the nearest hospital which is cavilian. The Cardiac consultant there, although a very young lady looked at my charts and my symptoms and said you have all the symptoms of POTS. I had even gone to the psychiatrist to see if I was imagining things. I only dound this forum a couple weeks ago and am so thankful for the information. I will share any information I get after my tests on 10-07. Hang in there and don't give up. I had to get rud of my beloved Harley because of this and sometimes can't drive. Physical activity is out of the question as my wife has found me more than once laying in the yard or shop.
Kristin, I don't know your age or financial situation but you should be able to go on disability. I pray you get some answers and help.
cate79299 kristin11489
Posted
Just found this on this site; patient.info/doctor/autonomic-neuropathy
I find taking a Pharmacuetical Grade Multi/Vit Mineral tablet in the morning and afternoon helps plus I take 3 cod liver oil capsules twice daily helps with the constipation. You may have to ask friends to rally around and see if they can help by taking your kids to and from their extra curricular activities. Also ask your children to do more things such as housework, doing dishes, vegetable peeling, vacuuming, putting the washing out, folding, changing sheets, etc. I cook enough for three days at a time such as casseroles. Even buying 2 cooked chickens from the supermarket each week. Just let them know Mum needs help You need to be very structured in organising your daily tasks but don't overdo it as not everything needs to be done just put it off for another day/week/month and get to sleep early, at least by 8pm. Have a cat nap at work during your lunch break. And if possible get the kids Dad to take more responsibility of them too.You may need to go on disability, talk to you doctor.
littleme1969 kristin11489
Posted
Hi.. I would say that fact that you are still able to function on any level is an achievement. Most people with these symptoms are pretty much house and often bed bound. You do need to dial your life back .. i know thats not what you want to hear but if you dont you will just fall apart one day as most of us have. This illness is very weird and often surprises me how i can feel not too bad one day then on deaths door the next. I managed to bring up my 2 kids but i had to stop work and get help with getting the kids to school etc as i was unable to leave the house for months at a time. What you are describing is classic neuropathic POTS. Maybe if you research that you will get a bit more info. There are a few types of pots I have hyperadrenergic POTS which raises blood pressure and floods your system with adrenaline , basically its like living constantly on the verge of a panic attack
?My advice would be to scale back as much as you can so your not straining an already damaged body and give it time. My first episode of POTS lasted 6 months but then it did improve slowly. Look at your diet..take supplements,, Magnesium is a good one for anything nervous system related. Sadly there is not much they can do for us as they haven’t got a clue what is causing it.