Brittany Murphy + Dysautonomia

[bjt22]

Jeff, I'm glad you're with us, but I'm so very sorry about the circumstances.

I wouldn't be surprised at all at your sister having dysautonomia. It runs in my family. I, too, am 100 percent sure that my late paternal grandmother had this. All of the typical symptoms, and even though it was years and years ago, she ended up with many similar treatments to what we use today. I think I got a double whammy as there are members of my mother's family as well who have or have had similar problems. I believe my father had mild symptoms all his life and still experiences them now but they are considered part of Parkinsons...none of the doctors seem to care that he had many of these symptoms his entire life before the Parkinsons. Two of my children have been diagnosed with NCS. Their cases are mild, thankfully. All of my children have had some symptoms of greater autonomic instability, including migraine and IBS. So, while there aren't necessarily a lot of detailed studies that would say definitively that this is somewhat hereditary, anecdotal evidence does seem to make a strong case in and of itself.

One aspect of your sister's sad demise that I think we should shine the light brightly on is the taking of what most consider somewhat conventional medications for pain as well as those commonly used to treat symptoms of colds and flu. Most of us have had some pretty negative experiences with some drugs, yet we don't seem to hear people who might likely have strong autonomic irregularities being advised against them.

[futurehope]

Thank you for sharing, Jeff. You did an excellent job with the video. I am sorry for the loss of your wonderful sister.

I, too, feel that there has to be more research done on the effects of medications on people with ANS disorders. I, for one, am overly sensitive to many meds, and to any deviation from the norm in my everyday life.

They do have some testing of CYPD6 (?) markers on genes to see if the person can metabolize certain drugs.

God's blessings to you, Jeff.

[juliegee]

Hi Jeff,

I'm so sorry for your loss. Thank YOU for helping to shed light on this disease. I also have many family members affected. Some have even had abnormal TTT's and are still in denial I agree that dysautonomia probably played some part in your sister's death. I can't imagine how heartbreaking that is for you.

You and your family are in my prayers.

Julie

[MomtoGiuliana]

Thank you for sharing your experience, Jeff. I am very sorry for your loss.

[StacyRN]

Jeff,

It's an HONOR to be able to thank you for the video you made... whether or not dysautonomia contributed to Brittany's death, it was obviously something she LIVED with, and YOU live with, and you did an awesome job of presenting the topic of dysautonomia to the public!! I have forwarded this video to all my friends, physicians, and put it on my FB page, because I think everyone should see it... not just because Brittany was famous, but because you did such a great job in helping dysautonomia awareness, and people will watch it because your sister was a much-admired actress...

THANK YOU again for making the video, and I am also so sorry for your loss...

I also love your outlook on life with dysautonomia, and your faith in God... you are an inspiration!!!!!!!!!

Hugs,

Stacy

[ByteMe58]

Jeff,

I also thought the video was very well done and had a lot of things we know about, but put in a different perspective. A loved on who also battles with the same symptoms calling out for research.

i forwarded it to a friend as well as I not only have dysautonomia but anemia as well.

Perhaps dysautonomia alone wasn't the cause, but enough chinks in the armor can weaken us to the point that something as typical as pneumonia for a healthy person could have been the cause of death to someone with their guards down.

How brave and thoughtful of you to put your feelings out there for the world to see. Much better than a 20 second tv news story after the next commercial.

I'm glad you are a member here, you will find support on many different levels.

If there is anything you need, these fine people will 'stand up' for you.

Frank

[iheartcats]

Jeff,

Thank you very much for coming here and sharing this information with us. Your video really hit home (only someone with Dysautonomia could describe it so eloquently and accurately!).

I'm sorry for your loss. And I am sorry that you and others in your family deal with Dysautonomia.

The news about your sister jumped out at me so much because I get very frustrated when media/others jump on 'what someone had in their medicine cabinet.' I do not like taking the list of medicines I must take to live a semi-functional life, but I have no choice if I want to live my life to the fullest I can. I feel there is a reason these medicines were created and that reason is to help people live and enjoy their life, friends, and family. Dysautonomia affects everyone so differently that there isn't a one-hat-fits-all treatment.

So thank you for getting the word out there. This must be shared and people must learn that Dysautonomia is real and that many deal with this illness everyday.

[shadesofgrey49]

This is pretty incredible and I hope it helps build some awareness on dysautonomia.

Thanks, Jeff.

[lauralulu]

I too have seen and found great value in the video you made Jeff. So very sorry for your loss. I know so many people now who are doing what they can to get the word out about dysautonomia and raise awareness. I feel that your lovely sister's light will be watching over us all. Thank you for writing here, for making the video, and once again so sorry about Brittany, she truly was a bright, shining light but like you say, she will continue to be that, just in a different way now.

[erik]

I bumped into one article that mentioned a "known murmur condition" (presumed to be benign). Not sure of the source/validity of this tidbit, but could this have been MVP which comes up in the dysautonomia world (and is semi-synonymous with POTS)? If it happened to be "MVPS" then that seems like tacit indication of dysautonomia (POTS).

Or just PVC's which also seem so common amongst us??? Not sure if the those make a murmur though.

On another angle, Hypertrophic CardioMyopathy can create a murmur. HCM can be considered benign in some cases such as mere/positive exercise adaptation... yet it is also associated statistically with sudden cardiac failure (as in young otherwise fit athletes).

I apologize for the speculating here. I hope it is taken in the spirit of understanding better what may have happened... rather than anything like a "tabloid" or "random rude blog comment" as happens elsewhere. I'm just brainstorming as to other things that might confirm the sense that docs missed a dysautonomia diagnosis along the way.

[ramakentesh]

The guy is very well spoken. He could be a great spokesperson for Dysautonomia.

[McBlonde]

That was such an excellent video by Jeff! Brittany had such a light! She's gone way too soon.

Pneumonia was the primary cause of death. Complicaed by..dysautonomia..//.the timing of meds,hot bath/shower/anemia? We probably will never know now. But it's a life lesson to remember if you are ill, be especially careful. Let someone know if you are taking a bath or shower, etc etc.....

[McBlonde]

The guy is very well spoken. He could be a great spokesperson for Dysautonomia.

A Most Excellent Dysautonomia Spokesperson!

[issie]

Thanks, for bumping this. It makes it all to clear that we really don't know what could be the outcome of this illness that we so desperately want a cure for. We need to keep trying to get the word out about it and hope that more research is done so that we can all find some relief from this thing called DYSAUTONOMIA. Sorry, for the loss of this brave, determined young woman. We need a solution.

Issie

[blueskies]

Thanks from me too for bumping this. Jeff explained dys very well even though we have a range of symptoms as we know. No one's are all alike.

I just wish I was able to have Jeff's faith in a god. I'm an atheist. I often envy those with a belief in a higher being but I can't believe. The reason for envy: I think it must make it just a little bit easier to believe someone/something is looking out for you and that being able to trust in this takes away some of the stess. But I just can't make myself believe.

[julieph85]

Blue, the way I have always rasionalised my christianity is- its better to believe and be wrong then to not believe and be wrong.

[blueskies]

Thanks Julie,

I liked the way you put it.

[misstraci]

yeah, Julie, I like the way you explain that!

[Maiysa]

Jeff, first of all my heart goes out to you and your family and am very sorry. Such a terrible loss. It was a sad day. Also, thank you for your words on God, I believe. Thanks for the reminder. What I wanted to talk about was, I saw this video a few years ago at the time I was very ill with a fungal infection. We found statchybotrys in our home and we also live in a fungal infection area which was the catalyst to the dysautonomia which I was not aware that I had at the time. I also had pneumonia from the fungal infection off and on for two years and it took the doctors that long to diagnose the infection which caused the dysautonomia to flare to an incredible degree. Anyhow, I just wanted to ask, and I remember hearing something on the news about that she had taken cold medication. It's been awhile and I have trouble remembering things. But my point is, I have dysautonomia along with orthostatic intolerance and on occasion a type of dysreflexia episode, although I do NOT have a spinal cord injury, so it's pretty rare. Before this I was a very very healthy girl, very athletic and active. But what I wanted to tell you was that one night, during my penuemonia phase, I took some cold medicine. I have a terrible intolerance to medication, so I was careful to not take too much. So I only took 1/4 of a teaspoon. And it was lights out. This has happened before while in the hospital and I was told I was very close to death and it was a very touchy and scary situation. Anyhow I knew this was the same situation from before as I went in and out of consciousness. The ambulance came and I was told that cold medicine is the worst thing I could have taken for the condition I have. My blood pressure dropped very low and my heart was all over the place. And it makes me wonder what happens to people who are not aware they have this and take a full dose. It's a scary thought. Anyhow, now if I take any type of medication or antibiotics this life threatening situation happens. I believe, and so does Mayo Clinic, that the infection changed my immune system and caused what I have had my whole life, dysautonomia, to come to the surface. I was told I am susceptible to sudden death. I don't want to scare anyone on here, but I feel people need to be so careful with just simple over the counter medications with this disorder. I understand in your sisters case it says pneumonia which was the cause of death, which I also had pneumonia at the time of these severe episodes. But for me, I felt it was the medication mixed with the new immune system from the infection that caused me to get that close to my own end. These episodes happened several times after pneumonia and it was 80% of the time due to medication. Was curious if this was similar to what happened to Brittany? I'm not so afraid of these episodes anymore, as I realized if I am close to ice cold water it causes this situation to stop and have learned that hot showers actually can trigger them as well. I was told the cold water causes the blood vessels to constrict, hence bringing back my blood pressure and putting oxygen back into my little brain. Thank you for bringing awareness to the cause. Also, so I don't scare anyone on here, I don't have POTS. I used to in the beginning, but it went away after a year or so and now I have a different form of dysautonomia. I want to make that clear because I don't want anyone to panic. All of this is so scary anyhow, don't need anything new to worry anymore than they need to.

Thanks for listening and a healthy day to you all!

[Hope]

I don't know how it can be said that this condition is not life-threatening. Had I lived alone without my family to take care of me during what so far has been the worst of it, I wouldn't have been able to feed myself, I couldn't move my body to even get water. Left by myself for too long I can't believe that I wouldn't have dehydrated and starved to death. And I do give all the credit for my recovery to Jesus! After 6 visits to the hospital and countless other doctor appointments with little help, it finally dawned on me that God created me and he was the one to turn to. I pray every day and I am given the insight as to what to do.

[RichGotsPots]

Everyone wrote so much it would take forever to read it all

I want to speak from personal experience as someone who has bad POTS with terrible breathing problems and who also had terrible pneumonia 1 month ago. I really thought I was knocking on deaths door. The two combined almost killed me. I couldn't move a muscle for and was bedridden for 2+ days. Good thing was I knew I had POTS and how to semi deal with it, but I wish it was the weekend when I first got it so I could have seen a dr. soon enough. But thank G-d I was able to get an xray the afternoon I saw the Dr. and get medicine first thing the next day and made the dr. give me tamiflu too. Took me 2 weeks to recover fully, but it was really dangerous.

Something else that interesting about Brittany's story is that her husband died 5 months later from pneumonia and anemia too. I really think they both probably had hypovolemia and not anemia.. Also seems they both got ill from their apartment. And I also had my worst flare in my last apartment and my girlfriend also started to have POTS symptoms in that apartment even breathing problems... I think there is something to it..

[RichGotsPots]

Here's another video about Brit and Dysautonomia

[diamondcut]

I just happened to find this picture the other day, and if you look at the colour of her hands compared to the rest of her body, they practically look blue, true she could just be cold but it has that purlple blue tinge thats something many of us are familiar with. More proof that she most definately had something like POTs?

http://www.designhairstyles.net/hairstyle/tousled-hairstyles/

[imapumpkin]

I saw this too, but her autopsy report listed pneumonia as cause of death. while I commend her brother for trying to bring awareness and recognition to the condition, I doubt it was a contributing factor in her death and shouldn't be a cause for alarm for the rest of the dysautonomia community.

Obviously people who know they have dysautonomia should do all they can to learn about their condition and what works for them and if they are medication intolerant and how best to take care of their bodies, etc but I don't think anyone on the forum has to worry that POTS itself is life-threatening.

[diamondcut]

I totally agree in that POTs itself was not her cause of death, if her immune system was not in great shape it left her wide open to a lot of nasty things. What i find sad is that there is not really a "celebrity" spokesperson who could draw attention to dysautonomia. You have Lady GaGa who has educated people on Lupus which is fantastic, i wonder who in the future will help us?