still trying to learn - more questions

[Nicole's Mom]

Hi. This question is about dopamine and low sodium, etc. and nausea and some information I found. I hope I can my pose my question properly because I am tired.

But first:

Besides extraordinarily high epinephrine and norepinephrine number Nicole also had a extraordinarily high dopamine levels. We are finally learning (best we can) about the epinephrine and the norepi and how Toprol can block the effects of at least the epi. So now for that reason- epi- adrenaline-y feelings and the high blood pressure and the standing racy heart, Nicole is beginning to take Toprol (in the teeniest, weeniest smidges to start which is okay -at least she's taking it and she will titrate up if she can tolerate it)

Nicole is still very dibilitated and it is tough for her and scary. However in tiny, tiny ways - a few things are better- but really- in tiny ways. But better is good even if it's tiny.

Now I found this interesting information (below) and I am trying to understand about dopamine and I am wondering it there is a drug or treatment that any of you use to reduce it. That is of course if this is even an issue with any of you - high dopamine.

I cannot even remember where I found this excerpt even though it was today ( I lost track of the site) Nicole's blood pressure drops when she stands. It would normally be low but with salt and licorice and fluid loading it got high in the supine position (raising the bed helped but it is still high) Anyway here's the quote:

{"One complication of high blood pressure can be hyponatremia (or low sodium in the blood ) This can occur because of two reasons. The first reason is that during crisis the patient has high blood levels of a substance called dopamine. Dopamine has many effects-it raises blood pressure, causes nausea and it also causes the kidney to increase its excretion of sodium. The second cause of hyponatremia complicating crisis is due to the heart falsely interpreting the reason for the high blood pressure. The heart thinks that the patient has too much fluid in the body and so it increases production of a chemical called atrial natriuretic peptide or ANP. ANP helps the body lose salt and takes water with it so that the result can be dehydration and hyponatremia."}

Anyway Nicole's pressure went from lower to higher since she got on licorice and lots of salt (and that's why she's one of the reasons she's starting on Toprol) but when I read this I see the possiblity of a catch-22- because Nicole has such high levels of dopamine show up in bloodwork. Nicole always has nausea which is mentioned in the article and still isn't retaining much salt and fluids except for a minimal amount

Anyway if anyone could shed light on any of this dopamine talk or has had their doctor speak about this subject or has recommended a treatment, I'd appreciate any help. I hope my question is clear enough and not sounding like a lot of mumbo jumbo.

Thank you

Beverly

[blackwolf]

Dear Beverly,

Check out the web site of Vanderblet U, they have some really interesting info on dopamine, epi. and norepi. It is on the same page as the stuff for Orthostatic Hypotension.

I hope it helps.

Blackwolf

[Nicole's Mom]

blackwolf: Thanks very much. I will definately check out the sites you mentioned.

Beverly

[blackwolf]

Dear Beverly,

That site I was talking about is:

www.mc.vanderbilt.edu/gcrc/adc/syncope.html

Blackwolf

[Guest tearose]

Beverly, I haven't a clue on the relationship of dopamine and sodium. I just wanted to let you know that I only have super elevated levels of norepinepherine, so I haven't had the opportunity to learn more. Would you like me to do some research for you? It may be that after this election is over you'll get some feedback. Let me know what I can do, best regards, tearose

[Nicole's Mom]

tearose,

Thank you so much for your offer. I don't know your whole exact story but my guess is that you already many of your own issues to deal with. But what a sweet and compassionate offer to go out of your way for me and Nicole. Besides perhaps you are right. Maybe some answers will trickle in once the election is over. Actually I really didn't expect a whole lot because the question is so way out there. Meanwhile if something useful does come my way I will be grateful. Also I have received an interesting looking reply from blackwolf by the way which I plan to look into later today.

You said your norepinephrine is high and you would like to learn more. Interestingly, I have have finally grasped some of the concept (thanks to this forum) about epinephrine- and that which I've learned has been very useful yet I have not yet grasped the high norepinephrine and it's role in POTS - (Nicole's norepi is high - her epinephrine is high too). I only know that the body often sends a lot of norepit out to people with POTS. And sometimes the same with dopamine. And from the little I've read I can see how dopamine can possibly wreak havoc too.

I plan to research dopamine more and if along the way if "grasp" the norepinephrine thing- I'll send it along to you. Meanwhile thank you so much for your thoughts. I can't even begin to tell you how touched I am for your offer.

Best Wishes,

Beverly

[Guest tearose]

Good mornin' Beverly, Say hello to Nicole for me. I was also relieved to hear that she had a tiny little ray of strength coming through! I know how hard that is, tell her I am so proud of her efforts. Remind her that along this path to not get discouraged if she winds up one step back, as long as overall the movement is forward she will eventually improve! This pots stuff is a dance of two or three steps forward and one step back! Just try to enjoy the music on the way!

I'm thinking a bit clearer today and realized I would have wanted to mention that decreased dopamine has a role in some disorders like parkinson's. There is so much research still being done in these areas of the autonomic and central nervous systems. Sometimes I feel we have a better grip on what is happening than the researchers since we live with the symptoms.

About my case, the brief summary is: In 1991, after 9 months of insufficient treatment for lyme disease I was struck with lymphedema on the left side of my body. (bite was on my left hand) The neurological and gastro problems began at that time also. I had six weeks of iv antibiotic twice a day through home infusion via picc line. It took two years for me to rally, I was never restored to my "former self". The journey is a story in itself, hopefully to share in person at a meeting sometime... Anyway, I've been through every test imaginable at least two if not three times. My problem is that because of denervation of my baroreceptor reflexes in my legs and splanchnic area, the blood is pooling and not getting to vital organs. My body's natural defense is to dump major amounts of norepinepherine to make the heart beat faster to get blood to important places like my brain, etc. Because I have the lymphedema I can't take the usual drugs like florinef. I have mitral valve prolapse with leakage and a first degree bundle branch block of the heart so I can't take beta blockers because they make heart blocks worse and then you need a pacemaker....bottom line for me is I treat my dysautonomia with non medical methods. I use compression from my toes to my breast and I wear a heart rate monitor so I know to sit before I trigger an svt. I'm doing okay these days. I've made MAJOR changes to my lifestyle but I find my rewards/joys in simple things.

As a person dealing with this disorder for years, my heart aches when I see the "newbies" come on board and want so much to hear that every thing is going to be better soon. I can't say that. I can say that if you try, you will find blessings in this journey and that the research in dysautonomia now is the best it has ever been.

You are an amazing mom and caretaker to Nicole and I hope you find the answers you seek.

warmly, tearose

[Michelle Sawicki]

Hi Beverly,

Here is an article about dopamine and what drugs can decrease it:

http://en.wikipedia.org/wiki/Dopamine

Michelle

[Nicole's Mom]

Michelle- Thank you so much for that link. It looks very informative!!! I don't where you find these things but you are always a storehouse of information. I am so grateful. There is so much to learn and it's sometimes hard to find the info. Thank you again for sending me the info and thank you so much for all that you do for this forum.

tearose- Thank you for your encouraging and compassionate words about Nicole and small steps. There have been subtle, small steps forward for her- really, really small and as you said a couple back. We hope and pray that she continues onward because this has been so difficult in so many ways. It's a tough thing to wraps one's brain around this whole ball of wax -the whole complicated illness. One thing I can never say enough is that the hope and encouragement and support from you and others on this forum have helped so much.

I want thank you very much for sharing your story with me. How is your quality of life between some Lyme issues and the effects of Lyme- dysautonomia? I have not mentioned this on this forum because I totaly want to keep the subject totally about Nicole and dysautonomia, etc. (and certainly not about me by any means) but because I think it could help you to know this and make you feel less alone I will tell you that I know all about that Lyme "journey" and how it can take you on Mr Toads Wild Ride. I truly understand your comment about Lyme (""The journey is a story in itself, hopefully to share in person at a meeting sometime...") because I also have chronic Lyme- went 3 -1/2 years before diagnosed. I had a multi- systemic illness with severe brain involvement without knowing what was actually wrong. I was a total and utter mess in a million ways. Nowadays I am not my former healthy self - but fortunately I am a good deal better because of antibiotic treatment ( also I stay on oral antibiotics all the time or I relapse terribly).

My ID who was BRILLIANT and also Nicole's doc knew about dysautonomia(but unfortunately moved away) suspected highly that Nicole has chronic, undertreated Lyme (or possibly a different spirochetal infection) and she thought Nicole could benefit from long-term antibiotics. This doctor also confirmed that Lyme can indeed induce dysautonomia as she had Lyme patients with dysautonomia (RI - #2 in the country for Lyme) To this point Nicole has not tried a therapeutic dose of antibiotics - one reason -because of the possible Herxheimer reaction where you can get worse before you get better with spirochetal infections and antibiotics. And she's afraid of a dysautonomia relapse (like she's in now). Yet she might do it one of these days-when she's sturdier - start low on orals and titrate up. But that's way up the road if it happens.

I am so sorry that you have been through the ordeal you've been through because of Lyme and dysautonomia. If you don't mind me asking do you think you had signs of being prone to dysautonomia when you look back upon your life? We thought Nicole's came on suddenly but when we look back there were strange "things" even as far back as when she was a baby. We do strongly wonder if it was a pathogen (again- spirochetal?) that ultimately put her into this arena of disablement. You mentioned that you have mitro-valve prolapse. Was that discovered before or after Lyme?

You've had to become very resourceful with your problems using non-pharm ways to get yourself about- since you cannot tolerate beta blockers or florinef. You said that you are doing okay yet have had to make MAJOR changes to your lifestyle. It is good that you have found pleasure in simple things. When Nicole is in a better place- when she is in a remission she too cannot live a full life. She has said that she tries to make the most of her moments which is nearly identical to your philosopy.

Anyway- thank you again for your response and if you ever feel the need or have the energy or even want to revisit those days and want to unload about your Lyme "journey" feel free to e-mail me anytime. Also I'm so sorry - I don't know what lymphedema is. Did that resolve?

I hope you have a lovely evening.

Best Wishes,

Beverly

[Nicole's Mom]

blackwolf- thank you so much for that specific site. I'm sorry that but I just noticed it and didn't see it before. I was looking generally under vanderbilt. But thank you so much for sending the www info. I will look directly at that site. Hope you have a lovely evening.

Beverly

[DancingLight]

tearose....

is that where everyone is??? he-he. i laughed at your post about beverly getting more responses after the election is over. no matter what side you are on it was so absorbing...i couldn't think about anything else and i noticed that the site here was sooooo inactive....i was wondering if everyone else was sucked in to the election stuff too.

anyway, tearose, i am glad that you shared your story. i am glad to be getting to know you on this site. you have a LOT of wisdom! i am going to go back and read your story when i have some more focus and am not heading to bed!

for now, hitting the sack!

emily

[Guest tearose]

Hi Beverly, I've been watching to hear how Nicole is doing. I hope today is a better day with her trial of mini-meds. I couldn't post on your other topic since I don't have the knowledge about the meds.

The links posted on this topic are going to give you many answers on dopamine. I am learning a lot by reading them.

To answer your questions of me...I do think I had a predispositon to autonomic problems and getting ill made things happen sooner. I only showed a borderline positive to the lyme test but was treated for it after 9 months. I showed improvement after six weeks of IV rocephine. Whatever made me so very sick then, damaged my lymphatics on the left arm and left calf and gave me my first major symptoms of dysatuonomia. It took a long time to finally consider my lyme "gone" and accept that the damage was here to stay. The lymphedema requires me to wrap compression bandages or use a lymphedema pump or use compression garments to keep the limbs from filling with fluid. It is a chore but what choice do I have? The dysautonomia took years to get dx. The journey I refer to is not more than 5% about the lyme. It is the entire journey that would take pages to describe. ...The journey includes...My trip through the medical maze, my relationships with others, my spiritual development, my steps through the darkness, my sense of self-worth...learning to live, act and react in the moment....anyway, I've learned to honor the moment and all there with me...I guess that my attempt to make the journey a "mindfull" process is what has sustained me.

Thank you for your kind words. I too am blessed to share this with all here. I can only reflect back what all give me....we are fortunate to have each other....humbly, tearose

[Guest veryblue]

Not to be too nosy here, but what kind of strange things did you notice in Nicole that dated back to when she was a baby? I am very interesed in her story as it seems vey perplexing to me. I hope she gets bette soon. It seems to me that so many people on this board noticed things that just werent quite right with themselves while looking back over their lives. I guess I should feel fourtunate that there was never anything wierd about me...I was just a spaz that required no sleep and went from soccer practice, to baseball practice, to playing touch football in the street on a daily basis.

Oh and about the lyme disease...you said that nicoles doctors thinks she might have it but wouldnt you have seem the typical lyme disease rash if she indeed had lyme? Just wondering. Take care!

[Guest tearose]

If you don't mind my input here to veryblue...

Lyme disease is not always found in traditional blood tests or by the traditional bulls eye rash!!!!! In point of fact, my spinal fluid was where the killing antibodies were found! How many doctors and how many patients are going to go through a spinal tap to see if they "might" find something? There is NO accurate test for detecting lyme disease. Such is the reality for many medical conditions.

Oh, and about being perplexed...I think as you age, OR as you change your perspective, you will see things differently. Someday as you look back and realize that where you are at 40 has a lot to do with what you experienced at 10, 20 and 30! You just may see that you were so busy zipping around in the early days and that you burned yourself out by 40! We all have a different amounts of power and energy and even extremely active, healthy people have to strike a balance. If you "overspend" there are consequences. Be well, tearose

[Nicole's Mom]

very blue,

It is late and I just saw your questions. I will be happy to answer them for you. I may not get to it until late tomorrow or early on Sunday morning because my schedule. I promise to do my best to answer soon. Just a bit tired right now. Take care.

Beverly

[Nicole's Mom]

veryblue,

To answer you questions- tearose said it very well about Lyme. Sometimes there is no rash or if there is one it may not be the classic "bulls-eye". Sometimes there is a rash but it is on the body where one cannot notice it. Also some people never get the initial flu like illness. They just go onto the next stage of Lyme.

As far as Nicole goes -looking back at her life- there were things. Unlike you she did not like sports- could not really tolerate sports. Felt crummy if she had to run - like in a race in gym. I remember one time when she was around 9 she burst into tears as she tried to make it around a short race track and said she felt really sick. She was coming in last and could barely make it to the finish line. When she was a baby if she cried when she was upset - like if we attempted to leave her with a babysitter (even with her grandmother) she would vomit as a response ( I read this can be a sign of autonomic dysfunction). When she was a newborn she never slept during the day (maybe one or two hours) where most newborns are sound asleep practically all day. When I looked into the nursery window (the olden days that's sometimes what we moms had to do to see our newborn babies when they weren't with us) all the other infants eyes were closed- they were fast asleep and Nicole's were wide open like something was up with her nervous system. Now wshe did sleep entirely through the night beginning at two weeks and starting at about 5 years old once she fell asleep we could not wake her up no matter how hard we tried- like if she was coughing in her sleep and we wanted to give her medicine- we couldn't wake her. It was like she had gone into a coma. Yet she'd wake up in the a.m. for school like a normal child- but she always required a lot of sleep at night. Also she had emotional ups and downs, hormonal problem, menstrual problems, she was easily startled (still does at 28). Also she has enlarged pupil- had them as a baby (read this can be a sign of dysautonomia). There's probably other things that I cannot remember. I am not saying that these definately were signs of what was to come but others on this website have experienced certain problem as they look back so it kind of makes one believe that these things Nicole experienced were "foreshadows" of what was to come.

I wish I had answers for you, very blue. I don't know what your day to day problems are but if I were in your shoes and feeling alone and scared and in the dark I would look for the smartest doctors I could find. Doctors that ask as many questions- ones that go hmmmm- let me think about what you are saying. The type that think outside the box. Tall order, yes, but not totally impossible. I certainly don't mean to simplify your dilemna. There aren't always answers but maybe you will be fortunate if you look hard enough in the right places.

Best wishes,

Beverly

[DancingLight]

beverly,

that is really interesting. thank you for continuing to share nicole's story (and yours too!)...

i am learning so much from you and also am really feeling like i am getting to know the both of you.

i too, can look back and say there were things that made me not "normal" growing up...but it was normal to me and to my mom and dad.

is nicole and only child? i am, and so that made it even more difficult to see that i was different from other kids. i just was me...and that was normal to us. there wasn't another kid to compare me too!

i must hit the sack...i promise i am going to post more one of these days! i think i should really sit down and try to write my "story" for the dinet site since you and others have asked me. this might be just the motivation i need!

also, beverly...if you haven't already and if you have energy please read my post under "so lonesome" by ernie b/c some of my story is there and i think nicole and i can relate on that stuff....thanks and hello to nicole.

emily

[Guest veryblue]

Wow...it seems like Nicole had a lot of strange things going on from the begining. I cant imagine anyone not being able to tolerate sports...sports are my life...which is making me very depressed by not playing them right now. I was a non stop ball of energy...went from soccer practice to baseball practice to playing in the street all the way up until the day this mystery illness hit me. My dad tells everyone he knows about how much spunk I had. He always tells this one story: When I was ten I played baseball with the boys (and I made the all star team and pissed all the boys off cuz I was better than them Anyway every day after we had just practiced for two hours I would run over to a big pole next to the field and bet the boys that I could climb up it faster than they could. They were always too tired so I would just climb up and down it by myself a couple time sbefore my dad made me go. I had tons of energy to spare. I guess that fact that I have no underlying pre-dispostsition to this illness gives me hope that I will recover. I have actually been keeping track of people stories on this site and have been shocked at the number of people who could look back and see strange things in their lives that help justify the fact that they indeed have POTS now. Out of 69 people: 58 had some kind of sign of illness or family members with autonomic problems: 2 seemed to contract this totally from a virus (with no signs or family predisposistion) 6 had their symptoms start due to a truama and 2 were brought on my pregnancy (w/o signs or family). So POTS does seem to have a genetic or congenintal basis. Maybe I could put the list up of people who were in each catagory...I mean it would be interesting to see. Let me know if this is something you might like to see. Oh and I have talked to a few people who have recovered from POTS...they all seem to have got the disease and had no triggers what-so-ever....just kind of woke up with it one day....yet they seemed to wake up a while later and it was gone. One of them was even a soccer player like me....so I guess I should have hope.

[yogini]

Very blue,

I think you should have a lot of hope that you'll get better. In my own case, I don't seem to have any problems other than POTS (knock on wood). However, I think I was prone to getting POTS, because I always had very low BP and a slightly fast HR. I also didn't focus on taking care of myself, in terms of eating right and on time, staying hydrated and getting enough rest. At Mayo, they said my busy lifestyle contributed to my illness. This really upset me at first, but then I thought about it and it makes sense. If I could do things over, I would take things a bit easier and if I ever get back to normal that's what I plan to do. (This is probably the perspective that Tearose is referring to -- wish I'd had it 10 years ago!)

-Rita

[Nicole's Mom]

very blue,

I will keep good thoughts for you that you do recover so that you can get back to doing what you love.

Meanwhile I will offer you motherly advice and that is to take really good care of yourself so that your body doesn't have to work so hard to compensate for what is not working right. Like for instance here's one thing you could do. Look into a good, healthy diet - Lots of people who don't feel well stay away from grains (except maybe brown rice), fried foods, junky stuff and especially sugar and highly starchy food. Oh yes and dairy. A way to tell if this will help you is to avoid all of these things for two weeks and notice how you feel. People who get chronically ill sometimes develop "intolerances" to the above foods (and sometimes other foods too). You can find lots of books about food intolerances and illness. By omitting certain foods from the diet one can actually gain better health since the poor, tired body doesn't have to work so hard to deal with foods that it doesn't want.

Also it seems you like to get "wasted" sometimes - I don't know how often you do this- by maybe you could try not to do this for a while too. Just start taking really, really good care of yourself- really -so that you can improve your chances of recovering completely. Get books and books on recovering from illnesses. There are lots of information in these books. You are too young to have a "mystery illness" that keeps you down. If I were in your shoes I would do everything I could to help my body recover. Just some motherly advice . . .

Best wishes,

Beverly

[MomtoGiuliana]

veryblue

I just want to point out that there are also many people who see signs of dysautonomia in their past who have regained a very good level of function. I am one of those people. I also want to add that one of my sisters, who has also been diagnosed with POTS, is the athlete of the family. From a very young age, she was active in sports from basketball to swimming to field hockey. She developed POTS suddenly at age 24. It was diagnosed quickly (since I had already been diagnosed, we immediately suspected what was wrong and she saw an electrophysiologist within weeks) and she is on effective medications and is back to running, working out, etc. and is finishing up her Master's Degree.

I also want to add that I strongly agree with Nicole's Mom. Try to focus on the things you can do that may improve your health. These things include: getting a diagnosis (if you don't have one); working with your doctor to try different treatments until you find a regime that improves your symptoms; trying to eliminate foods you may be intolerant of from your diet; tryting to improve your diet by eating more "whole" foods, getting adequate rest, etc.

Concentrating on what could have initially caused your illness or your likelihood of recovery is not likely to improve your symptoms or well being.

Katherine

[Nicole's Mom]

Katherine,

Thanks for the reminder, (i.e. the "boost") that people with dystautonomia who have seen signs in their past can actually get to a good level of functioning. That reminder will help me to sleep better tonight. Soon when I get the energy - I will post what's beem going on with Nicole in the past 2-3 days. Not that great. Which is why I appreciate your reminder. Good night. So tired.

Beverly

[MomtoGiuliana]

Beverly--

Let us know how Nicole is when you have the time and energy. I'm sorry to hear she is still having such a hard time. There must be a treatment regime that will help her out there--it may just take awhile to find and implement it.

Katherine

[geneva]

Beverly, I have had Nicole on my mind the last few days and hoping that she might be making some progress. Sounds like you are also running on low energy and need to be sure to take care of yourself....easier said than done when it comes to helping our kids I know! I agree with Katherine that surely there must be some type of med routine that will give Nicole some sustained improvement. I am just sorry that this setback has been so long for her this time around.

Take care of both of you!

[Nicole's Mom]

Thanks Katherine and Geneva for your thoughful words. It helps to receive such kindness and compassion. I am tired. And when I can I will post the latest. There's been a lot going on. Sometimes it's easier sometimes for me to respond to others' posts than to drum up the energy to describe the latest - but I will.

Best Wishes,

Beverly