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Sick and Scared


Dizzy Dame
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Hi all,

I began menstrating three days ago and my syptoms went crazy. I clocked my blood pressure in the 70's (which is very low for me), and my pulse would go from 50 laying down, to the low 200's standing. I thought I could "tough it out", but yesterday I was unable to get out of bed, I would begin to sit up, then grey out and fall backwards. I lay in bed, having to pee, alone in the house for four hours before my mom came by and helped me to the bathroom. Today I "fell" four times by noon, and wasn't even able to stand up from the toilet :rolleyes: . I called my EP and he said I should go to the ER (dum-dumdumdum). I get there and, of course, the doc's look at my HUGE file and shake thier heads. They said they'd be happy to admit me, but that all they would be able to do was keep an eye on me.

So here I am, home again. Still dizzy, and tonight I decided that I just can't stay in Hawaii anymore. I'm going to be moving in with my Grandparents in GA for the month of October, then back to my hometown (washington dc) in November. I'm so upset. I really wanted to make Hawaii work, but it's just not possible with how my health has been.

I feel like my whole life has just been blown apart. The life I have now is utterly unrecognizable from my life even three months ago. I just want to get better, or at least accept that this is my fate and find some kind of peace with it :D .

Ok. I've rambled long enough. Hope everyone's having a better day than I am .

-Lauren

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Guest 12StringANSGuitar

Hi!

I hope you feel better soon; I'm sorry you're not feeling too well.

I'm up late, and I was going to post something in a second, but I saw that you were from Hawaii.

I have this thought with regard to the bodies nutritional balance, and how that might effect everyones paticular dysautonomia.

In paticular, seeing that you are from Hawaii...I was wondering if you currently, or have ever, eaten sushi? I believe they have toxins even when prepared correctly, and I wonder if something like this could throw someones inner balance or harmony(of the ANS), out of tune.

I've been reading a bit on certain neural issues, and calcium and magnesium are very important things to watch also.

Then obviously, diet is always important with health issues; but I think even more so with people with ANS issues.

take care D.D.

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hi lauren,

i'm so sorry you're having such a difficult time right now, as i'm sorry that the er wasn't able to help you. it seems you're at a crucial point now where you have to make decisions about your life. i can only say that i know decisions that are made now, can always change over the years (i'm sorry i'm having brainfog, so i hope you'll understand what i mean). life turns out to be so unpredictable that you might never know, but it would be possible for you to move back to hawa? in some years. keep hope lauren,

corina :rolleyes:

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In paticular, seeing that you are from Hawaii...I  was wondering if you currently, or have ever,  eaten sushi?  I believe they have toxins even when prepared correctly, and I wonder if something like this could throw someones inner balance or harmony(of the ANS), out of tune.

I've been reading a bit on certain neural issues, and calcium and magnesium are very important things to watch also.

Then obviously, diet is always important with health issues; but I think even more so with people with ANS issues.

take care D.D.

12string,

Thanks for your kind words. You know, I never thought about it but you may be on to something with the sushi. I eat sushi almost daily, especially since I've become sick since soy sauce is high in sodium. I also eat alot of undercooked fish (not sushi, but hawaiian style) in my diet. I'll talk to my doctor about it.

And thanks, corina, for your thoughts as well.

Also, does anyone know a good doc at Emory? I'll need a new one when I move.

Thanks again, you guys are great :rolleyes:

Lauren

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Guest 12StringANSGuitar
Thanks for your kind words. You know, I never thought about it but you may be on to something with the sushi. I eat sushi almost daily, especially since I've become sick since soy sauce is high in sodium. I also eat alot of undercooked fish (not sushi, but hawaiian style) in my diet. I'll talk to my doctor about it.

You're welcome D.D.

I was thinking, if I were a Doc, and I knew of your health issues, I'd probably ask how your diet was, but then, from all I've heard on this dysautonomia issue, the Docs many times know very little themselves.

Is your Doc one who has a background in Dysautonomias?

*got to go to bed, I'll check this in a.m.

Jeff

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Is your Doc one who has a background in Dysautonomias?

*got to go to bed, I'll check this in a.m.

Jeff

Ha! A doctor who knows what they're doing? on my little island? not a chance. That's one of the reasons I've decided to go back to the mainland: My doctor diagnosed POTS after going to the website I told him about :rolleyes:

But my doctors are very kind and they care about me, so at least I have that going for me.

Hopefully the move will give me some answers though. But thanks for the concern Jeff.

Well, I'm off to bed too. First I have to wake up my boyfriend so he can help me to the bathroom or I may grey out, fall, and break myself. (big sigh)

G'night,

Lauren

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I am sorry that the ER did not do anything for you. can't they even give you IV fluids?

Last night I went to the ER and they gave me two bags of fluids per my request. It helped my symptoms a lot to get rehydrated. My body just could not seem to catch up. Honestly I have never had such a pleasant ER experience. Everyone was sooo nice. They listened to what I had to say and they were very interested in learning about my medical issues. Actually they had heard of POTS. A few years back I had a very bad experiance at this ER.

I hope you can start feeling better soon. I love Hawaii...can blame you for wanting to go back.

dawnA

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Hi Dizzy Dame,

Sorry you are having such a hard time. I have been there SOOOO many times as well so I can relate like you wouldn't believe!! I live near Atlanta, GA & know lots of doctors here at Emory, Piedmont & then some. Just let me know what kind of doctor you are looking for, EP, Cardiologist, Neurologist, etc... and I will help you out in any way I can. I would definitely get to an internest or GP and immediately get a blood test for heavy metals and toxins. All these substances have neuro-toxins on the ANS and CNS. I had mine done and it was negative, but it's better to be safe than sorry. Also, mercury fillings can do ANS damage. If that is the case with you, it will come across in your heavy metals blood screening. Take care and know that you have a friend in GA that will support you & get you through this tough time. Take care & don't give up :rolleyes:

bamagirl

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Lauren,

Hope you are feeling better. I have bad times also when my menstrual cycle is going on. My doctor started me on Flourineff? for the week before my cycle. This past cycle wasn't near as bad as the ones before it. Just something to look into. I know everyone is different, but that has helped me. Good luck.

I am sorry that Hawii isn't working for you. Good luck on finding a doctor when you move back.

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Hi, Lauren. I am so sorry you are having such a bad time and that the ER was useless, but that has pretty much been my experience for me and my son.My menses also seems to make my symptoms much worse. My BP loves to drop to the 70's/40's and I am left in a reclined position drinking gatorade with hopes it will go up. My heart rate goes from brady to tachy, also, but mine has never made it to the 200's unless exercising. You poor thing!! I hope you get some help soon. There is no quality in life for what you are going through. Hopefully, you will find someone more knowledgeable in WA. Hang in there!!

To April: I live in Macon, GA. Where exactly is Dr. McConnell and what kind of doctor is he (specialty, I mean)? I'm seeing a new internist Monday, but as I've posted, I have no idea what to expect: ignorance or a thorough understanding of the wonderful world of dysautonomia!! Depending on what I go through Monday, I may be looking your doctor up. Thanks!!

Melly

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Hi,

I have problems when I have my ovulation and menstruation. I was mentioning to my cardiologist the other day that maybe I could try contraceptive pills to stop menstruation. He said I coud but he has no idea which one to prescribe.

Were you able to get an IV at the ER?

I understand how frustrating it is to go to the hospital and not to get medical treatment.

I hope you feel better today.

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Hi, Ernie. In response to the problems with menses and ovulation, I, too, suffer a great deal more those times of the month, as I mentioned. When I was breastfeeding, my GP put me on the progestin-only pill. Seems like I felt a lot better at this time. But, then again, I was breastfeeding, and prolactin can be very relaxing. I had talked to my former internist before I moved about trying to take the progestin-only pill again to see if it helped. I may give it a try when I see my new doc. I'm at the point that I'll try anything that sounds reasonable. I could never take the estrogen pill, because it made me crazy and all of my symptoms worse. But I did have side effects from the progestin-only pill, too; in the form of spotting every couple of weeks. Kind of aggravating. Keep me posted as to what you and your cardiologist decide.

Take care,

Melly

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Dizzy Dame..

wow.. I can totally feel and understand what you are going through!

I know that menstration makes my pots much worse.. and theat high tachy is not cool..

I hope that once you get back to GA.. that maybe you can find a doc to help you... maybe finds a med combo that will make you feel better.. if not functional..

HUGS

to you

Linda

i hope that you feel better soon!

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Hi Dizzy Dame,

I live near Atlanta, GA & know lots of doctors here at Emory, Piedmont & then some.? Just let me know what kind of doctor you are looking for, EP, Cardiologist, Neurologist, etc... and I will help you out in any way I can.? I would definitely get to an internest or GP and immediately get a blood test for heavy metals and toxins.? All these substances have neuro-toxins on the ANS and CNS.? I had mine done and it was negative, but it's better to be safe than sorry.? Also, mercury fillings can do ANS damage.? If that is the case with you, it will come across in your heavy metals blood screening.? Take care and know that you have a friend in GA that will support you & get you through this tough time.? Take care & don't give up :)

bamagirl

Thanks guys for your support. Just knowing that I'm not alone in the crappy ER treatment makes me feel a little better.

Bamagirl,

I'm looking for a new electrophysiologist and possibly a neurologist as well. I can get my doc's here to reffer me, but if you're seeing someone at Emory who has experience in dealing with POTS, let me know his name :) . I'll also ask about heavy metal toxins, since I eat so much fish. (I've heard some types of fish have mercruy).

Thanks so much for your help and thoughts.

Oh, and yes, I did get IV fluids in the ER, which seem to help my symptoms, but only for about 24 hours...then I crash again.

- Lauren

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HI Lauren!

I live in Metro Atlanta too.

My personal experience is that Emory was no help with POTS & NCS. They didn't even know how to completely read my pacemaker. I was TOTALLY shocked by this since they are supposed to be "the best". Anyhow, I stuck things out with them for a year and then went somewhere else.

I use Cardiac Disease Specialists out of Piedmont. Their website follows if you want to look them up. Anyhow, some of the guys there studied under Dr. Grubb years back when he was at UVA. Anyhow, they are so much more knowledgeable about POTS & NCS than Emory. I've been using this group now for about 5 years and they've been great. http://www.cdspc.com/index.shtml

If you decide to use this group, you need to tell them you have NCS and need a Dr who works with that (Because not all of them in the group deal with the same problems)

I have ended up in so many er's; not just in metro atlanta but all over GA. (My job, when I was able to work, had me traveling the entire state) and all of them always told me they refer patients like me to the Dr's I'm now using as they have the reputation for understanding Dysautonomia.

In terms of Neurology, I've lucked out and found one in the Alpharetta area that is working well with me. I do think Emory has some great Neurologists but getting in to see the ones who know their stuff is difficult (they are overbooked and usually not taking new patients).

Email me if you want any more specifics.

It would be neat if we could organize a local support group. Sounds like that might be difficult though because we still aren't necessarily that close. It's not that far when you are healthy but considering I can't drive at all it's an issue. Macon is about 90 miles from me, Locust Grove is about an hour, Emory is 40 minutes but can take as much as 3 in traffic (you'll find Atlanta is one of the worst places for traffic. Last I saw we're #2 only behind LA). You may want to check on NDRF site as well. There's a guy on that board who lives closer to Emory than I do. He may have some recommendations for you.

Good luck with your move. I know how difficult it is but keep telling yourself this is what you need to do for now. The future may hold something different for you in time and you may be able to return again.

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Guest 12StringANSGuitar

Hi Dizzy and Bama,

I'm looking at both of your posts here(below in quotes), and I am thinking about what these toxins and heavy metals are doing at the cellular level, and what is happening to the neural response mechanism consequently.

I'm also thinking how I can better explain my other thread's theory(because I don't think I did a good job in my explanation, and maybe that is why there were few responses).

O.K., Dizzy Dame, you said you know a bit of physics I think.

I guess if someone here had a chemistry and biology background, we could really get something going here.

I think what I'm saying is that if we just take one part of this puzzle(food's effects),

we can easily see that a metal or toxin will change things within the cells itself.

How is that done? The integrity of(lets use just one cell for this discussion) the cell is literally compromised. How is it compromised? What has occured inside it?

It would be easy to just say its innate vibration was changed, but that would be lazy on my part(though essentially, true).

What has happened is that its internal chemistry has shifted; has gone thru a variance of its natural normal state.

With the little I know of chemistry, I think its fair to say that its(the cell) total atomic # of protons and electrons, has changed(and not for the better).

Hence, with this change, so goes a change in 'vibration'.

Thats the best I can do right now. Does this begin to make sense of what I said in the other thread, and does it help on this one?

Thankyou, I'm really trying hard right now, and I feel I'm embarrassing myself in some way.

Jeff

Hi Dizzy Dame,

I live near Atlanta, GA & know lots of doctors here at Emory, Piedmont & then some.? Just let me know what kind of doctor you are looking for, EP, Cardiologist, Neurologist, etc... and I will help you out in any way I can.? I would definitely get to an internest or GP and immediately get a blood test for heavy metals and toxins.? All these substances have neuro-toxins on the ANS and CNS.? I had mine done and it was negative, but it's better to be safe than sorry.? Also, mercury fillings can do ANS damage.? If that is the case with you, it will come across in your heavy metals blood screening.? Take care and know that you have a friend in GA that will support you & get you through this tough time.? Take care & don't give up :)

bamagirl

Thanks guys for your support. Just knowing that I'm not alone in the crappy ER treatment makes me feel a little better.

Bamagirl,

I'm looking for a new electrophysiologist and possibly a neurologist as well. I can get my doc's here to reffer me, but if you're seeing someone at Emory who has experience in dealing with POTS, let me know his name :) . I'll also ask about heavy metal toxins, since I eat so much fish. (I've heard some types of fish have mercruy).

Thanks so much for your help and thoughts.

Oh, and yes, I did get IV fluids in the ER, which seem to help my symptoms, but only for about 24 hours...then I crash again.

- Lauren

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I use Cardiac Disease Specialists out of Piedmont. Their website follows if you want to look them up. Anyhow, some of the guys there studied under Dr. Grubb years back when he was at UVA. Anyhow, they are so much more knowledgeable about POTS & NCS than Emory. I've been using this group now for about 5 years and they've been great. http://www.cdspc.com/index.shtml

If you decide to use this group, you need to tell them you have NCS and need a Dr who works with that (Because not all of them in the group deal with the same problems)

It would be neat if we could organize a local support group. Sounds like that might be difficult though because we still aren't necessarily that close. It's not that far when you are healthy but considering I can't drive at all it's an issue. Macon is about 90 miles from me, Locust Grove is about an hour, Emory is 40 minutes but can take as much as 3 in traffic (you'll find Atlanta is one of the worst places for traffic. Last I saw we're #2 only behind LA). You may want to check on NDRF site as well. There's a guy on that board who lives closer to Emory than I do. He may have some recommendations for you.

Pooh,

Thanks for the advice about Emory. I'll look into piedmont.

I love the idea of setting up a support group! Hopefully we could find a location that works for everyone, although I know that people are smattered all over the state.

Thanks again for the advice. All of you have been lifesavers :):)

-Lauren

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Pooh and Dizzy,

I'm the Macon gal. I would also be really interested in forming some sort of support group. Let me know what you all think. Contact me by e-mail anytime. I think April is also in GA? Probably many others. I'm relatively new here.

Best,

Melly

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How ironic0 reading people talking about periods making pots worst whilst haing to lie flat on my back in bed (thank god for laptops) because I'm having aheavy one myself.

I had my first full blown syncope in AGES last night--my mum and dad found my on the floor, lying very awkwardly really thrashing my arms and legs and gasping for breath. I felt wobbly for AGES afterwwards :huh:

I KNOW for SURe that there is something really simple wrong with the hormones in our bodies that causes this reaction--it just needs to be studied more clesely so the medics can be more repcise about it and fix us properly.

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hi lauren -

i know i'm a bit late but just wanted to send a (((HUG))). having had to very recently acknowledge (not the first time, but never easy) the degree of my health limitations i really feel for your decision to have to move back to be with family. i'm closer to family now than i have been in years but probably not close enough as my poor parents have been making 2 hr drives (one way) way too often this last month or two. i think my post was right before you joined but i recently had to cut back on school (i'd been on disability entirely since december & was trying to go back to grad school) and it was/is SO tough. hang in there....

:huh: melissa

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Sorry I haven't responded sooner, I think even my computer is in a potshole right now! Hope you feel better soon. So devastating the way this affects our lives and not for the better. :huh: I know this is a hard one for you, but for now you are doing the best you can for yourself. The best thing to do doesn't always feel the best, but think of it as a set back, not as a permanent thing. Hope you feel better very soon. morgan

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Thanks again guys for all the support. I'm doing better today, I was even able to go to class!! B):( So things are looking up (it probably has alot to do with the fact I've stopped menstrating).

I think it's soooo strange that alot of us have more problems during our cycle. I wish they'd do some more research to find out why!

Cheers,

Lauren

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