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Hi all, I have had syptoms since I was 15 :) (Im 30)& not one doc could explain why. I met a lady who had exactly what I was going through & she told me a doc to see. Since then I have been told it is NCS only by one doc & NCS & POTS by another. I also have arrithmias. My BP is 75/58 on a good day with HR 120+. I started taking Midodrine 10mg 2x's a day about a month ago. but I still feel lousy. My doc says that he may pull my license until its under control. Which stinks because I work FT. My husband already does everything & now he may have to take me to work. Any one have suggestions on what works best and by my symptoms whether it is just NCS or both. Also has anyone done clinical research. I was told there was a study about to start at Vanderbilt. Is it worth going to.

Next Q. I have read a few of your forums about genetics. I have a six year old daughter that has been sick for months & no one knows why. Since I found out what is going on with me could she have signs this early. Since August she has run a ongoing fever of 100.5 or higher, stomach aches, dizziness, contiuous fatigue. During recess at school she goes to the nurses station because she doesn't want to play. The school calls me at least 1 a week. & docs don't know what else to do. They have done blood work, cat scans, but nothing comes of it.

Jen :)

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I have had ncs etc since I was 5, although perhaps earlier. I thought everyone experienced the visual and auditory interference...It was all quite unexplained till I was 31! I was in the hosptial many times and they ran all kinds of tests.

From what you describe I think yes she may very well be experiencing it.

Does she have trouble in the morning?

Does she prefer to stay where she knows things? LIke near a place where she can sit or lay down (and feel safe)?

Does she get pale if she stands for very long?

Does she hide, or curl up in a ball sometimes?

Does she sometimes get hot then coolish then does her vision kind of gray in from the outside?

Does she see colored things floating around?? (she may have fun describing the colors, I did. You may notice she covers one eye or bobs her head around to see things...ie: she is trying to see around this stuff.)

If she sits down suddenly she may be very hot if a spell is on her...

I had tons of tummy aches when I was 6-9 years old and it was the nausia and being upset from what I was going thru.

I hope this helps. I have a 4 1/2 year old and watch her like a hawk for it...

Edited by hmichel
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Welcome to the forum. So sorry to hear you are not feeling well. Have you had a tilt table test at all to confirm a diagnosis or any other autonomic tests? I am not sure if they can give this test to children, but you may want to take your daughter to a doctor so she can get a standard autonomic work up too.

Also, have you tried wearing compression hose? Many people find them to be very helpful.

I only have POTS and not NCS, but I believe that treatments for both are about the same.

Hope you can find answers for your daughter soon.

Hugs,

gena

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hi,

Yeah I have had the tilt table, echo, eeg, event loop recorder etc... Defintely NCS. I have 2 docs one says yes I have both one says only NCS. Who knows. I have tried hose but I am an Aquatics Director at the YMCA and it is very warm in my area making it hard to wear them here. Doc says I need to find new job. due to what i do daily. Also pulled my license. which stinks. The midodrine makes me feel weird does it to anyone else?

I have a BP monitor at home & I checked my daughters it was borderline. when I go back to doc 2/6 I will ask him about it. Have any of you been to Cleveland Clinic & if so who do you see.

:huh: Jen

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If you don't faint while seated, there is no reason to pull your license. There's a link on the Vanderbilt website that describes when it's safe and unsafe for POTS/NCS patients to drivez (it's near the bottom of the page):

http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=4789

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hi jen -

welcome! sorry that you have reason to be here but glad you found us. i'm an aquatics gal too (though not at the moment...i miss coaching/teaching so much!) re: NCS vs. NCS & POTS vs. some other combos it can depend on what testing you've had, what docs you've seen, if it's a good/bad day for you, etc. and most of the time i don't think the technicality of the diagnosis makes a huge difference in treatment plans but more so symtoms; though knowing your HR is high can direct treatment (and not all with "just" NCS have high HRs). i'm 26 and my docs (several autonomic specialists) can't agree for me between POTS/OI/NCS "plus" (b/c of other problems i have) and PAF but it's not going to change what we're doing so i have one thing at some appts and another at the others B)

myself and others on the board have been in research studies at vanderbilt. i'm not sure if you saw it or not but "dizzy dame" just posted from there today. people have had a wide variety of experiences. for me it was overall good though not perfect and follow-up is pretty non-existent. i'm glad i went but by no means did it give me all the answers or "fix" me (not that i expected it to, but one can always hope!) i actually wrote a LONG "summary" of my time there this past may ( http://dinet.ipbhost.com/index.php?showtop...ilt+chronicles) if you're up for some reading (some of the info is now "dated" for me personally but the info re: vandy still applies as i've spoken with people who have been even more recently than myself). you can also do a search for "vanderbilt" on the forum to get some other info re: others' experiences.

i'm also sorry to hear that your daughter has been having such a rough time. while it could be a wide variety of things it does sound like dysautonomia could be a possibility. i think it would certainly be worth considering trying to find an autonomic specialist for her to see. i hate seeing kids sick :)

hang in there..and again, welcome!

B) melissa

p.s. re: cleveland clinic, many on the board have had great experiences with testing there but generally don't find the follow-up to be what they would like. this is for the most part through the cardio dept. i just moved to cleveland myself in august but already have had testing up the wazoo and all fairly recently. my uro there actually referred me to the head of the autonomic lab there though who is a neuro. i think i'm the only one on the board that has seen him but i've been pleased. i still see dr. grubb though as well. essentially b/c i have neuropathy and fairly systemic issues i need a neuro on board but have known & been a patient of dr.grubb's for ages so they're sort of tag-teaming it. are you in cleveland and/or ohio??

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Hi all, I have had syptoms since I was 15 B) (Im 30)& not one doc could explain why. I met a lady who had exactly what I was going through & she told me a doc to see. Since then I have been told it is NCS only by one doc & NCS & POTS by another. I also have arrithmias. My BP is 75/58 on a good day with HR 120+. I started taking Midodrine 10mg 2x's a day about a month ago. but I still feel lousy. My doc says that he may pull my license until its under control. Which stinks because I work FT. My husband already does everything & now he may have to take me to work. Any one have suggestions on what works best and by my symptoms whether it is just NCS or both. Also has anyone done clinical research. I was told there was a study about to start at Vanderbilt. Is it worth going to.

Next Q. I have read a few of your forums about genetics. I have a six year old daughter that has been sick for months & no one knows why. Since I found out what is going on with me could she have signs this early. Since August she has run a ongoing fever of 100.5 or higher, stomach aches, dizziness, contiuous fatigue. During recess at school she goes to the nurses station because she doesn't want to play. The school calls me at least 1 a week. & docs don't know what else to do. They have done blood work, cat scans, but nothing comes of it.

Jen :)

I have only been sick for about a 1yr and 1/2 but so I don't know as much as others but I was told by a doctor at John Hopkins that when I do have children that it could pass on to them. I am 20 years old and I am currently an active duty Marine but I am retiring anyday now. I haven't been able to drive since I began passing out because I pass out so frequently (over 300 times). The VA is giong to take care of me. If there is anythign that you may need just let me know. I know a lot of people. I have been living at the National Naval Medical Center for the past 1/2 year and I have met a lot of Washington, D.C.'s people that are helping me out. Just let me know.

LCpl Price, Sarah Dionna.

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welcome to the forum although I'm sorry you had to find it. on the dinet web site you will find a list of meds that have helped some. It seems as though all of us are on a different combo of things. It may take a while to get the right combo for you. I would try to find someone who is knowledgable about this for you and to either rule it in or out for your daughter. the hose don't do me any good. I take midodrine and I don't think I have problems with it and it has really helped. I'm on nadolnal (sic) for the high heart rate. I went to addenol about a month ago and my stats are very good although I really can't say its done any good for the fatigue. good luck and prayers are with you.

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Guest Belinda

Hi. Welcome to the forum..You asked about docs. at the cleve.clinic I know of one doc. there who does more of the diagnostics of OI and POTS..I have heard good and bad things about her. Name is Doctor Fouad

she is head of syncope lab at cleve. clinic.

If you are in the area another place to try is University Hospitals..I had my tilt done there and follow up now with a neuro. His name is Dr. Alsheklee he is also located in the Westlake Branch of UH. He is underneath Dr. Thomas Chelimsky.

I have also found that there are some electrophysiologists that are familiar with POTS and Autonomic Dysfunction.

Good Luck and I think It would definitley be worth looking into your daughters symptoms from a autnomic standpoint.

Take care..Belinda

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Hi and welcome to the forum. I also suffer from POTS and NCS, as well as a few other things. I have a great EP/Cardio in Boston who has alot of POTS patients.

I hope your daughter is okay and that you find out what's wrong with her.

Goodluck!

Jacquie

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Guest Belinda

Oh yes I forgot to add that Dr. Grubb is in Toledo..waiting list is quite a lengthy to get in.

I am seeing him in April. From what I hear he is pretty good with autonomic issues, will find out soon!

And if you need someone to chat with my e-mail is Belinda82877@aol.com. I know that when I was diagnosed in late Nov. I had lots of questions and was pretty scared!

Keep your head up!

Belinda

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