godslyric

I cant travel at all anymore... I dont even drive on long trips because the traffic triggers so much adrenaline that my sleep patterns that night have me jerking out of sleep, just as Im falling to sleep. Then even if I fall asleep, im up in two hours wide awake, and have to lay there for an hour or more to fall back out...Its all from the over flow of adrenaline, and cortisol that elevates from the adrenaline... that happens in response to anything outside my normal day. I just have to realize I have an illness that requires life restrictions and I have to deal with them...Doctors in this area of medicine really dont have much to give to us yet, throwing meds at it dose more harm then good in my experience, but thats just me. I have a good cardio Doc and a good primary, and they will go along with whatever ideas I have on dealing with this...I cant ask for anything more then that..This stuff can really mess with a brotha's life...lol...And people ask why Im single...lol... I found a lot of extremely helpful info on Chronic Fatigue sties, they have been at this for a long wile now and have some very good coping techniques.

Thanks for all the positive feedback, and kind words guys. I have to say, my Faith is my own personal way of living. Being in the Arts all my life, most of my friends over the years, and even today, are Agnostic, or atheist. And I dont ever remember any of us having even the slightest difficulty exchanging views on things in this area of life...I dont subscribe to any form of judgment on anyones choices in life pertaining to Faith, or lack of Faith. But I have to say over the last 15 years, or so, in and out of hospitals with Dysautonomia and Ulcerative Colitis, (and nearly dyeing from UC 3 years ago) my Faith made the worst of it tolerable, and even free of the fears that go with sever illness, and the very real possibility of not making it out of the hospital. In short, God is Love, and Faith is trust, and if you dont want to deal with God, just deal with whatever Love you have around you, friends, wife, kids, and so on...Because when all is said and done, thats the only real thing we have on this rock...Thanks for your post my friend... PS...Theirs a good meditation CD out there called Holosync, The Awakening Prologue...It really helped me with getting outside the stresses of this dysautonomic circus. They have several other levels that are way over priced and arrant near as good as the Awakening Prologue that they push pretty hard when you order the Awakening Prologue...Dont waste your money, ask them for the free introduction CD and dont let them sell you on their ****...lol

For sure the Immune system, and the ANS are married and dont always get along, in my case their fighting all the time...lol...I almost bit the dust 2 years ago from ulcerative Colitis, and it wasent a pretty way to go... I went on the meds when I was in the hospital... 20 years ago the doctors told me I needed to take them, but no, I dident listen...I guess Im just a hard case. But Im still taking care of the dysautonomia with exercise, diet, hydration, stress reduction, and strict sleep schedule, it seems to be working well...

Im Brittany's brother, and I made the video...The video was made with the specific intent of getting the word out there about Dysautonomia ... we also had help from Inside Edition who also did a piece on with me, on Britt, and dysautonomia, its on Youtube.com/jeffbertolotti, feel free to utilize my video in getting attention to this illness.., but I cant speak for Inside Edition as to their property and how they feel about it being used... In no way were we trying to state Britt died from dysautonomia, she died of pneumonia, plain and simple...Perhaps the editor could have crafted the video better in terms of any confusion... Britt, myself, and our grandmother have dealt with this illness...The video is just a tool to help with awareness about the disease itself. Britt had it, I have it, and people need to know this exists...Im sure my sister would want to see her passing help others to avoid the self doubt, misdiagnosis's, and the general stigma that comes along with an illness that many doctors dont even know exists, let alone treat correctly...I'm fully aware of all the medical data in reference to my sisters health and death, she was after all, my sister, and I know the symptoms she had been dealing with for many years before she passed...So in pushing ahead with this illness myself for many years now, and seeing my sister get hammered like she did both on the movie set, and in her personal life, I felt this was the correct thing to do... God Bless

Its near impossible for your personality not to change with this illness...How can you be expected to blend in, and socialize with others when your body is going through BP, HR, and other metabolic fluctuations wile your trying to be social. Ive had to carry on conversations wile I was getting hit with vertigo, gray outs, or adrenaline spikes...It's not easy, let alone going on a date, or a trip...For every disease their is life changes that have to be altered to accommodate the illness...Iv been single for a long time now because of this illness, but I still walk 3 or 4 miles a day, and try to stay active, but I know socializing isn't always in the cards, so I just adapt, move forward, and be very glad I dont have anything worse to deal with...At this point a cyber sweetie is looking like the right way to go...lol...Keep the faith, with a gradual push in exercise, good diet, good hydration, and stress reduction things do get better with all this. God Bless

I think it's weather the heart itself is healthy or not, that makes the difference in weather we should indulge or stay clear of doing the dance. For me, the adrenaline that builds up during the process over a long period of time is what may, or may not cause PVC's and or PAC's...My hearts good, but the dysautonomic circus that culminates during the dance, can be problematic, but my cardio Doc tells me to" just take it easy"!!! Good advice, but sometimes not always practical...lol

I get that along with some very pronounced PVC's and, or PAC's right in the middle of a very good orgasm, meaning one that I have held off letting go of for more then a half hour or more and have built up a lot of adrenaline in the process. It use to scare the bejeguz out of me, but I kinda expect it now and then now...Unfortunately it seems to happen with the level and quality of the orgasm itself...lol...So for me its a trade off, if I keep it tame it dosent happen, but if I let it really build up for a wile without releasing, it tends to be a problem. I do believe it can be a real problem if someone's heart isn't healthy...Hmm, rough dilemma...Just sayin

I just happen to be taking a BP reading wile I was driving on the express way to drop off some saxophones to a school. My BP has been low for a month now due to vasodilatation which I get every summer when the temps go up. At the very moment the BP monitor was taking the reading a police car pulled up right on my bumper and got my attention real quick. My reading was 245/145...I shook my head and took another reading after the police car went around me about a minute later, and it was 105/78 ...Machine error or a crazy reaction to the fear...Hmm...Any thoughts? Seems like a drastic spike, even for a dysautonomeian...

No disrespect to you or your step father, but all benzodiazepines at any daily dose are potentially addictive. I think before giving this group of drugs that have done so much harm to so many people all over the world a clean bill of health one should investigate far beyond a doctors thoughts on the matter. These drugs work with the Gaba receptors and rearrange several other neurotransmitters to accommodate them. The result is always having to up the dose weather its within a few months of years, each person is different. Theses are serious drugs and I know first hand the damage they can cause using them long term. Short term they can be a blessing, long term they can be pure ****. You dont want to deal with withdrawal from benzoes, trust me! For more info try www.benzobuddies.org and go to the fourms. Best of luck, God Bless...

Hi, Im Brittany Murphy's brother Jeff Bertolotti I have been a member here for a wile now. We did this video before the coroner's report came out. My reasons for feeling Brittany had this illness is because of the many conversations that I have had with her about the symptoms she had been experiencing at that time, along with what I know in reference to symptoms she was dealing with the last few years on movie sets. I learned about these problems she was having on the set from friends of mine in the business. She was diagnosed with MVP around 1999. Myself I deal with this every day, and in my heart I feel Brittany was also dealing with it. She did die of pneumonia, my view is that she was also dealing with Dysautonomia head on. I would never attempt to use her name to draw a light on this matter unless I was very sure she was dealing with it. And I do believe she would be honored to help us all in this fight knowing how she felt about others who she was sharing this planet with. She was a blessing, and she will continue to be a blessing even from a distance. It takes a very bright light to shine in very dark places, Britt has already shinned a light on Dysautonomia in a way none of us could have. I hope you all deside to help with forward movement in this struggle. Write your congressmen and piont them to information about this dis order, start to email the AMA, and anyone else that needs to be nugged, just start to get the word out there, wile we have the opportunity...It wont last forever, and we do need support in this. With Love, Jeff Bertolotti

Dose anyone know what range of normal BP readings are say between lying down and standing, or the norms between sitting and walking around. If your BP is 125/80 sitting, what should the reading be when you are up moving around. I realize BP bounces up n down all day. But in a normal body what would be the point range difference between sitting and say walking to the car. difference of 20/10 maybe??? I could never seem to find a site with these kinds of comparisons.

I just got tested yesterday for D and b12, waiting on the results. I do know nov, dec, Jan, and feb are real tough months for me. My symptoms become so severe I'm never sure what to expect. But this year has been much better. We have had no rain here in Ventura CA and the sun has been shinning most every day. Im still getting hit with the winter dose of symptoms but not near as bad as previous years. Iv also started getting up at 7AM to get as much sun as possible. All this points to Vitamin D as far as I can tell, but Ill know for sure in a few days. Im lucky to have a Doc that will do a test for me if I feel it may shed some light on the matter. But they all seem to know very little about any of this. As far as supplementing B-12, Ive always had very difficult reactions to Vitamin b-12 and folic acid in the past. I get very amped up for a few hours. Have no idea why.

I find working out in the early part of the day leads to problems for me. My hydration doesn't kick in till after lunch, so I tend to labor after eating my noon meal. By then my system tends to be hydrated, that is, if I have put the right amount of h2o n salt into the system.

I had a POTS crash in 2002 and was laid up for almost 2 years. Prior to that crash I was hiking canyons 4 time a week, boxing on and of, and weight lifting. Well needless to say after the crash my conditioning went south in a very big way. I went from 180lbs training every day to 125 lbs and in bed for months on end. The doctors were very close to worthless in my case. I knew I just had to get out of bed and move at all costs. I started with walking down the hall, then down the stairs, and then around the block and so on. It took me a year to get to where I could walk a mile in a park again. I weened of all my meds (with a doctors help) and got myself to 160 lbs and could reengage with the world again after a few years. But it seems I just cant get my body to do labor again without being hammered a few days later with severe exhaustion and pots symptoms. I have had Stress tests, Echo Stress test, all kinds of Blood work, all of which come out normal for the most part. My adrenaline output is way over the top if I'm not concentrating on relaxing my body, and the area in my frontal lobe where the hypothalamus is located which tends to relax the whole body if I do it right. But never the less if I wash my boat (that I live on) it takes a few hours of labor, then I will get knocked on my butt 2 days later every time. It seems to be worse in the winter time when the sunlight is scarce. Then in the summer I get a bit hypo manic. If I take Vitamin D3 my pulse goes up and I get jerked out of my sleep as I'm falling into REM state. So D3 is out along with B12 folic acid and a host of other supplements my body doesn't seem to want to receive. It dose seem as if when I push myself physically to a point having these problems and just keep pushing at it, I tend to get use to the new area of conditioning and my body excepts the new parameters after a wile. But it is a rocky road with all of this. Any insights?

Also dose anyone know of a site that gives a guideline for BP readings in different circumstances. Like standing as apposed to sitting as apposed to walking and so on.