Am I On The Right Track?

[xxkishaxx]

Hello everybody. My name is Kisha, and I'm 24. First, let me give you a little history about myself and my symptoms. When I was 6 months old, my mother said that I would hold my breath until I turned blue and passed out. This would happen a lot, so much that she took me to the pediatrician about it. His response was that it was normal, that I was just crying out for attention. I still kept doing it even when she didn't make a big deal about it. Fast forward a few years to when I was about 7-8 years old. This is the first time that I remember blacking out. I just remember being inside the house, and feeling weird. I remember falling backwards, and then I woke up on the couch with a washcloth on my head. I have passed out countless times since then.

Every doctor I've been to has ordered tests, scans, everything, and they all come back normal. In high school, when I would pass out, the nurses always said I wasn't eating and told me that I was hypoglycemic. That was the best explanation anyone could give, so for years that's what I thought was wrong. I am tired all the time. I have to make myself do things. Taking a shower is a chore. I get migraines a lot, a headache every day. My body just hurts. I have sharp, almost electric feelings shoot through my limbs. Something always aches every day. In the middle of the night, I wake up sweating, sick to my stomach, and end up passing out or coming close. For the past few years though, I have had to quit jobs and take breaks from school. I have terrible brain fog. I was a straight A student in high school. I always finished tests fast. Now, I run out of time. I have to keep reading things over and over to understand them. I can't remember things at all. I have to make lists out to remind me to wash the clothes or call someone. Sometimes I can't even get my words out. I cannot stand the heat or sun, it is my enemy. My skin looks blotchy. I am very sensitive to noises, everything sounds loud and slamming to me. I can feel cold all over but be burning up inside. I sweat so much I leave stains on my shirts. I have to use the bathroom more than usual. My hands tend to stay cold all the time. My body temperature is never above 98, that's how we can tell if I'm running a fever. I get lightheaded very easily. I often get chest pains that feels like a lot of pressure in my sternum. Sometimes it's like I'm holding my breath and something clicks on in my brain telling me to breathe, and I let out a long exhale. Once this happens, I start to panic, telling myself not to forget to breathe. I have a lot of anxiety and depression. I just don't feel good. I don't know what's wrong with me. I want to go out and be a normal 24 year old, I want to be able to do things. I know my family supports me, but I also know that part of them just think I'm lazy and a failure, and it hurts.

Looking up my symtoms I came across this forum, and I'm so happy I did. You all seem to know what I'm going through. I lost my insurance when I turned 21. I don't go to the hospital when I have these episodes because I always get the same report. They don't know. I've heard everything from migraines, UTI, stress. This is all just stress. I am so tired of hearing that. But since things have gotten worse, I went to a medical bus that comes to a local church once a month. They perform blood tests and several others for free. I wrote out a full page of my symptoms, thinking the doctor would think I'm a nut. She seemed very, very nice. She understood me and didn't think I was crazy. I mentioned dysautonomia, and she said dysautonomia could be 1,001 things rolled into one. My blood pressure was good, 106/81 is I remember correctly, and my heart rate sitting was 80bpm. She seems to think that I have a vitamin D deficiency and a possible thyroid problem. I told her that I've been tested for thyroid problems before which turned out negative, but she says to test again. I am waiting right now to hear back my results, which should be within the next few days. My question is, could it just be vitamin d deficiency, or could it be dysautonomia? Should I continue to push this diagnosis? What do you all think? It would just be nice to have some answers..

[puppylove]

Hi!!! Welcome . Your symptoms deffinetly sound like dysautonomia to me! I am vitamin D deficient and I think there was a poll done that said the majority of potsies are. The doctor thing is so frustrating, I went through that too. Sorry your having such a hard time. We are here for you!

[xxkishaxx]

Hello puppylove! Thank you for responding and for the warm welcome.

This doctor thing really is frustrating. Hopefully my results from the blood test will come in soon so I can let you all know further information and where to go from there.

[Monstrosity]

I dont have my Doctorate but I feel like myself along with many on the site have at least a BA in Dysautonomia. I'd say your on the right track. Can you have a Tilt Table Test and other Autonomic testing done?

[xxkishaxx]

When my test results come back I am going to ask the doctor about how I can go about to have those done with no insurance. I just have a gut feeling that vitamin d deficieny alone is not the problem, especially over the course of my life.

[jpjd59]

Kisha:

Welcome! I am relatively new to the forum also. My daughter is 23 and was just diagnosed with POTS in November of 2011 (after a viral illness). Have you tried checking your heart rate while laying down and then when standing up? You might want to try this (or have the doctor try this). This might give you a clue as to whether or not it is POTS. Also, as other members have told you, a lot of potsies are vitamin D deficient (I know my daughter is) so if the doctor says that you are deficient, taking vitamin D supplements is always worth a try to see if it helps you.

I hope you get some answers soon. I know that this journey can be very frustrating.

[janiedelite]

Jpjd has a great idea to check your BP and heartrate after resting lying down for a few minutes, then stand and check BP and HR every minute for 5 or 10 minutes. I'm glad your doctor is taking your symptoms seriously, but if you have a type of dysautonomia, your BP and HR may not compensate normally when you stand. That will be concrete data that your doctor could use when determining what's wrong with you.

Best wishes and welcome!

[Valentijn]

You mentioned that your BP was 106/81. Although the systolic and diastolic are each pretty normal, they're also closer together than normal, giving you a pluse pressure of 25 (106 - 81 = 25). Average pulse pressure is about 40, and the few things I've been able to find about pulse pressure indicated that 25 and under is extremely low, and not in a good way. From what I understand, it means blood isn't being circulated as effectively as it could be.

I'm usually at 40 pulse pressure laying down, then often drop to the low 20's when sitting up for a while, or if I stand up. I feel pretty bad when it's that low, so it does seem meaningful. So far my record is a pulse pressure of 17 last night while standing for 10 minutes, but my BP monitor usually gives up when my pulse pressure is under 22 or so and gives errors instead.

[Dizzysillyak]

Sorry you're experiencing this. Fwiw, at this point, if I were you, I'd forget seeking a diagnosis and change

my diet to a paleo / wahls diet. Veggies, esp dark green and colored are key.

Dr terry wahls cured her ms with diet and her videos are on the web. I really like her TED video

because it explains how traditional medicine failed her and why she developed her own protocal.

Tc .. D

Ps. You may want to break up your post. I couldn't read most of your post because I need small paragraphs.

[xxkishaxx]

Thanks everyone for the suggestions. I checked my heart rate this morning when I woke up, still lying down, it was 84. I stood up and after 5 minutes it was 114, 10-15 minutes later, 131. I didn't feel any stranger than I usually do, though. Still waiting for my results.

[xxkishaxx]

I got my results back today. My vitamin D deficiency level was low, but not too much, 26. They left off the thyroid part of the test and I have to go back to do it again. Hopefully we'll be able to talk more about my heart rate and blood pressure then too.