CDJ

Firs of all thak you for your reply,they determine the Beta Hydroxylase Def. by drawing blood standing sitting laying.Apparently my lab at home only drew blood sitting but in doing so my dopamine was quite high.The dr. said even with the draw being done wrong that I would show a goose egg for epinephrine,to be sure about jis dx he had me drawn there,I should get resuts today.The IST was determined by blowing ito a tube(brain fog and can't remember the name of the test)for 15 seconds,while doing so my hr hit 200 right away. The tech said they do not see many of those.I am tachy most of the time.I used to be 160-180 while I was sleeping,since the ablation it is now 120 in my sleep.I hope you have better luck than i did.Just make sure when you speak you don;t miss anything because it may be awhile before he lets you speak again!! Best of luck!!!

We just got back from Vanderbilt.They did Autonomic testing and of course I was having a good day and did not pass out!!however my hr exeeded the gage on the test,it stops @200bpm. The Dr saw seems very intelligent, but did not come across as compassionate. He dx me based on the testing from that day as hypersensitive sympathic disorder as well as IST.Apparently my BP is going from very low to very high now,which I have noticed in the last few mos.He does not seem to be a fan of ablations however, he deemed mine a success. I went there with the impression that I had beta-hydroxylase deficiency,but apparently I don not.I just have a high level of Dopamine.He did blood tests to confirm this because he based this on blood tests I had brought w/me.He also suggested IV fluids @ home.He will compose a letter of recomendations to my Dr. here at home once the blood results are in.He did not seem interested in me for trials due to the duragesic patch I wear for back pain. I was sorry I asked questions because his answers were lengthy and confusing.He is "outraged with the dx of Dysautonomia" because he feels this is a "Junk" word that has no medical definition related to pots.That kinda surprised me. I filled out the family history section of the application and listed my mother as having Diabetes.I also included my dx of hypoglycemia and he went off on a tangient about people that self dx using a family members glucose monitor and when I tried to explain to him that the glucose monitor used for Diabetes does not accurately measure hypoglycemics and that I was medically(by a real Dr.) but he just continued talking right over me. The nuses and residents were very thourough.They, as well as the facilty, was impressive. When I asked how my long list of dx from other specialties tied into pots he did not seem to have any answers.His respose was very clear......"That is not my specialty" needless to say he seemed to be rather uneffected by the fact that someone was desperate for help and some answers.I was soooo bummed!! I had a long lit of questions that I got no answers to.My doc in chicago seemed to know more.I am waiting to go to mayo,maybe they will be better.

Eliza, We don't quite know which condition the approval was based on because I have not yet rec'd the letter.I did have a lawyer.I will keep you posted. I'm leaving for Vandy in the morning but will respond when I get back. Thank You! CDJ

I won on the 2nd try!!! For those of you still waiting best of luck it looks like they are starting to acknowledge us!!!!

I have an appt @ Vanerbilt on thurs.My doc requested a week or two evaluation. Vanderbilt has told me that I must first be seen by a doc and then will be referred at a later date.From what i have seen on this forum some of you have gone for the week or two eval. I am wondering where I went wrong.I feel like I am driving for 8 hours to do autonomic testing (which I had done in chicago where I was dx)and then I will have to go back. I don't get it!can you Vandy veterans help me to understand the process??? thank you cdj

Welcome to the forum!! you will find that alot of your questions can be answered here. Sorry that ou have to deal with this condtion.If you are having spells of crabiness,It could be the nature of the illness and how your body reacts to it.I do not get crabby.I do not have the energy before,during or after an episode. I di however expirience extreme anger @ times and discovered that I had Hypoglycemia.That WILL make you crazy!!! I suggest getting a blood draw done on a regular basis as to find the parts of your body that is causing problems. BEST OF LUCK TO YOU!!!!! Cindy

I pass out after meals about 50% of the time. i stay away from large meals. I cannot have a hamburger w/o passing out,I have to eat 3 or 4 bites every hour or so. I try to eat a little bit all day long. This happens when I am very smptomatic. Not all the time. I could go months w/o having a problem or it could go on for mos. Good luck, Cindy

My family has a 10 acre christmas tree farm in southwest suburbs. We have a one room house(like a banquet hall) a swimming pool, golf carts(this would be for us potsy people to get around) and beautiful scenery.I was wondering if any of you would be interested in having a picnic of sorts for us and our families.I sure would like to meet some of you and i think a picnic would be a blast. I think it would be nice for our families to meet others that are in THEIR similiar situation as well as us having the opportunity to meet one another. The tree farm is air conditioned and handicapped accesable.I was thinking sometime in August.I am in the process of scheduling a visit to Vanderbilt so the date may change but I should find out this week when I am going. If anyone is interested please let me know. Cindy

I just had a sinus node ablation 2/28/06.For the first 45 days i felt FABULOUS!! My color was better,my thoughts were sharper(even though my doc insists she didn't go near my brain) prior to the ablation my hr was 160-180 ALLLthe time.After the ablation It went down to between 80-130. Near the end of the second month my hr would drop to between 40-50. My fainting spells would come on much faster and more often.While the idea is that my hr did not need to exceed 100 to bring up my bp,I now believe it does for a reason. Now my hr has come back up to my original 160-180. I am back to feeling just as I have for many years. The doc said she would need to do a second ablation. This time being more aggressive and putting in a pacer. She is contacting Vanderbilt this week t have me seen down there before she would do the second ablation,her thinking is that this should be a last resort because of how it affected my fainting spells. There is comfort in having a slower faint as oppposed to a low hr and less fatigue. I also seemed to have more fainting spells after the ablation. I also exprienced a "Pause" in heartbeats,which is very bizarre.The pause scared me more that anything because it felt like my world was on hold for a few seconds and I had no idea when or where or for how long.This decision is a very personal one and obviously a crap shoot. It just totally stinks that we are faced with these types of decisions when there doens't seem to be a standard for how our bodies will react.If I could get back the first 45 days after the ablation I would be the happiest person in the world,But in the doctoors opinion there is no explation for why I felt so much better and it turned so bad,other than my fatigue was reduced for that period.The one question i would ask myself and did was,how many success stories are out there for ablations that are not responding to this post because they are back to living their lives and no longer looking to this site for answers.I have talked to docs that say that ablations are a 50/50 shot for people with pots. What I wonder is where are the 50% that did get relief from their procedures??????My doc has [atients that were as severe as I am, in their 40's that went back to work and are maanaging their symptoms but have basically gotten their lives back. I don't know if this helps because I am still not sure how I feel about ablations even after having one.I think it comes down to what we are used to following,our gut. Sorry if this confused you but isn't that one of our common symptoms,CONFUSION!!LOL!!Good Luck to you,and all of us that are faced with this decision.Great Topic! take care,Cindy

Sarah, I see Dr. Engelstein @ Ressurection Hospital.She is Cardio/Pots. She is really great!!!1

Hi all, I have been out tonight taking my son for an MRI,I made it through the day(despite the stress of having to sedate my 8 yr-old for an MRI)without any episodes!!!!!!!!! This has been the first time in weeks that I have gotten through the day w/o being symptomatic,UNTIL I opened my computer. I am now very nauseas and I am wondering if maybe the computer triggered it? I dimmed the screen and have it @ a funny angle and it has'nt helped. I also lit a candle I know this sounds completely insane to healthy people,but I know you guys understand.For those of you with any interest in Chiari,I was @ Children's Memorial in Chicago and the nurse there claims that they are performing Chiari surgeries ALL DAY and EVERY DAY of the week. Apparently there are MANY children w/ this dx and thier nurse claims that the success rate is staggering when performed on children!!!!!!! Please help with my trigger question. THANK YOU!!!!!!! Cindy

Amy, I am just SW of Chicago and would be interested in a get together of some kind. We go camping toward Rock Island in the summer,so I would be able to meet anytime as long as it is a weekend.This is a great idea,Thank you!!!!!!!! Cindy

Thank You so much ,Lizzy!I'll try that and see how it works.

I have had fainting spells after meals lately. I have tried small meals,large meals and a snack of about 15 fritos.no matter how much i eat,I faint.I have tried eating while laying down,sitting,standing and walking.None of this has made a differance,I still pass out.Any advice on what helps this issue????? Cindy

Hi Amy, i feel for you because I know excactly what you are going through. I have many sleepless nights. I have tried getting up early and forcing myself to stay awake all day in hopes that I will sleep @ night and It still doesn't work! The only thing that sometimes helps is Elavil and Neurontin combo but that is not a guarantee. I have tried a warm bath(Because 'hot' makes me pass out) and Aleve. Other than that I am sleepless in Chicago 50% of the time. Sorry I could'nt be more help, Cindy

Than You to all of hepful stories and words of caution. It means so much to me to have the help of all of you!!!!! Cindy

Michelle, I am so interested in the results of this question. Only because I have had many expiriences w/this topic.I used to look young for my age but now I have many wrinkles.I am 39 and have been told repeatedly that I should look into some laser surgery. I have lost 40lbs with the illnes so people chime in and tell me that I need to gain weight and the wrinkles will go away.I consulted my dermatologist that i see for my skin issues due to my EDS and he claims that because of my chronically low bp that my capillaries have shut down and will not reopen/(wrinkles will not go away).I know that it is not myu weight gain so I believe this is a symptom of one of my many illnesses. Thanks for the topic, Cindy

Megan, WoW! Thank You ! this is extremely helpful. Cindy

Hi there calypso!! I have been feeling the same way because i am used to being in control of things and this condition does not always allow us to do that. You definately have a plan you are focused on certain things and that is great!! You are fighting for the life you want to have!! Only you know what is right for you. If you can't do certain things it isn't because you don't want to.You know how you feel and you have to stay connected to that to figure out what works for you. Sometimes I have found that I just to enjoy the journey while waiting for everything to fall in place. You are doing a great job of not giving up!!!Maybe it is time to just slow it down a little. Good Luck!! Cindy

Thank you to all that posted the times and topics for the "Mystery Diagnosis" T V show on Discovery Health channel. I am in the process of pursing this issue. if any of you can share your expiriences with the pursuit ,I would appreciate it. I scheduled an MRI Of the neck (C-Spine) and will see a specialist in Chicago soon.The show relly got me excited that maybe I could find a solution!!!How crazy is that......... : hoping that I need brain surgery!!!

Joe, I have also found anxiety and priority changes in my brain. I used to stay awake @ night thinking about life and I magicallystopped doing that,it seemed as if I were no longer the person I once was. I almost feel like I don't even connect with who I was.I think on a much different scale regarding other issues,even the smallest things are not the same. I cannot explain my issues other than my body is demanding other things from me. Good luck to you. I have found that once the answers appear they seem to roll on in faster than I'd imgined they would.I hope that holds true for you to! Cindy

Is anyone out there from Illlinois? I live in sw suburbs and am looking for people to meet in my area. I haven't had any luck finding support groups and would like to talk with someone else going through the similiar things that I am. Thank You!! CJ

I have had crashes that come out of nowhere too!!! Just when I think I am getting better(HAHA) I will crash and not see the outside for weeks. Last summer I was ok (which is odd)but fall came and I crashed and haven't come up yet.But then I have had great days ubtil evening and then crash.I can not find ryme or reason for this.I will say most often my crashes are in the morning.I had been sick and looking for an accurate dx for 12 years until Northwestern dxed me. Now I see Dr. Engelstein at Ressurection.She is thr director of electrocardiopysiology.She is very knowledgible and very compassionate. I like that she includes my assesments in treatment. i think after years of being told i was crazy by other doc's it is nice to finally find someone to work WITH me.

I am new here but not new to this illness.I am very happy to have found a place where i can talk to other people about things.I have been through an ablation procedure recently and my doc mentioned putting me on fluids at home if the ablation does not bring much relief.I was wondering how that works and if any of you are on fluids at home.Does a nurse come to the house? Do the fluids really make a differance? Thank you .Cdj