I saw a couple of posts here about Livedo Reticularis, I looked up the images too and my legs get this way too, I always thought that was the TMEP  maybe not.  Now I have to read up on what it is

Lisa,
I saw Dr Afrin last week.  I asked him about my forced sleep episodes and he immediately mentioned PGD2.  Which much of his questioning seemed to focus on issues with prostaglandin synthesis in my case.  He was very interested in knowing if I had nosebleeds, or other bleeding and bruising issues, as well as cramps and headaches, which all can be tied to Prostaglandins.  He will get into more detail when my lab work comes back.  I'll keep you all posted what I learn.  

Lyn

Hi Lyn,

So glad you got in to see Dr. Afrin.  I'm very interested in what he has to say, as I have problems with PGD2, I'm certain.  Didn't know it affects bleeding and bruising!

Lisa wrote on 05/23/12 at 06:42:37:



Lisa and Joan, just saw this post. As I reread my post, I see I should have clarified and stated uterine bleeding is driven by prostaglandins. Sorry for any confusion.  I really struggle with excessive menstrual bleeding which of course leads to hypovolemia and orthosatic hypotension.      Heparin and is the big mediator tied to other bleeding.  

Lyn    

Cameron had an interesting episode recently,  he took himself to bed at 6 o'clock at night and slept for 13 hours. I couldn't rouse him enough to get much response from him, I assumed he had a migraine, but when I finally woke him in the morning he said there had been no headache, or aura, which is his typical pattern. His doctor said this can be a form of migraine, only sleep, and that it might be a sign he is growing out of them. I'm not holding out hope for that yet, it was the 4th episode in 2weeks, which is much worse than his typical once a month or so. However it was interesting that this can be a type of migraine. Anyone else heard this?

Ruth and Lyn,

Because there is so very little written on this prolonged sycnope that we masto patients go through and because there has been ONLY ONE study and that was done with ONLY 3 patients, there is a GREAT DEAL LEFT OPEN FOR DISCUSSION!!!    

I have studied this a great deal and have been recently speaking with neurologists at the NIH and some who have written up case histories of their masto patients trying to find more understanding about this.   I have the support of a Brazilian doctor who is an authority in vasoplegia and he is helping me and we are coming to some conclusions about this and I´ve gained the support of some neurologists and cardiologists at the University of Sao Paulo (USP) who want to investigate my case further.  USP is one of Brazil´s best and largest medical universities and their doctors are top notch and to have them take interest in my case is very important.   Dr. Paulo Evora, who is also with USP has been supporting me since 2009 when I began seeking for answers for my aortic aneurysm and he is who led me to INCOR where they were able to save my life with my open heart surgery.  He fully understands vasoplegia and he is supporting my conclusions regarding it´s involvement in this reaction.  

I´m not at liberty to say what we suspect right now and it´s enough to say that there seems to be much more going on here than that which was reported 20 years ago.  However, for right now, all we can go on is that which has been reported.  Each case is it´s own case and each of us have our own personal issues with the mediators being released and how those mediators affect our bodies.

What needs to be done is that you have doctors investigate your cases for epilepsy and have an EEG run while you are in syncope.  Your mediators also need to be measured. There is a very strong need to eliminate any doubts regarding epilepsy for there is a case where this is involved and this syncope has been proven to cause brain damage when the patient is hypotensive.  It is indeed a DANGEROUS reaction and there is one death already contributed to it.  Whether or not it is true syncope is perhaps the question, and unfortunately doctors, thinking it is merely that, do not take it seriously.  But they should for this is not a normal syncope and anyone who remains hypotensive and in this reaction for hours is in danger of becoming brain damaged.  

The articles show that this patient must be given epinephrine to turn this reaction around.  If your doctors are afraid to give epinephrine, then IV antihistamines is the next best thing.  

The reason for either epinephrine or IV antihistamines is because this is mediator provoked and the mediators must be combated.  Prostaglandins are proven to be involved, but nobody has indicated any kind of anti-prostaglandin treatment, only epinephrine.  We stumbled upon the IV antihistamine treatment through a report written by Dr. Simon Brown on Cardiovascular Anaphylaxis and Shock in Anaphylaxis articles.  He cites the findings of the use of antihistamines in animals and that oral antihistamines was ineffective as well as even dangerous.  Yet in my case, since I was in the ICU following my open heart surgery, we had no other choice but the IV antihistamines and they were VERY effective in combating the syncope whereas it was following that, when I got back home that we saw that the oral antihistamines were like taking mentos - useless!!!!   Why?  I don´t know yet.

Sometimes we must insist with our doctors.  Even if  they are afraid to use epinephrine, INSIST upon at least the IV antihistamines!!   You should not be left just lying there in syncope with it going on for too long of a time period.   This is a potentially dangerous reaction and it´s proven to be so!  Their ignorance of this doesn´t make it any safer, so please insist with your doctors.    

If you are needing articles, please PM me and inform me what the subject is that you are needing please and I`ll be glad to send you the information - don´t forget your email address!!!


Lisa

Sorry I took so long to see your post, GD, I´ve been rather busy lately and since this is a reaction I go through on a frequent basis, I´m probably the best to answer this.  

I would say most definitely this was related to some kind of trigger.  It could be food, heat, physical exertion, emotional stress, many things.  It´s important that you try to rule out possible problems with vascular circulation and epilepsy.  At this point in time there has not been any serious investigation into the neurological possibilities here and we can only pinpoint it to cardiovascular problems and that of hypotension being behind it.   So for now, that´s all we can say, but my case refutes the research because I´m almost always normotensive or hypertensive when I´m going through this and doctors have yet to study a patient with this aspect.  

So, try upping your antihistamines when you feel this coming on.  Take a double dose of your antihistamines and see if  this helps to pull you out of it.  It sometimes helps me.

So sad - they studied it and blamed it on the hypotension but didn~t tell us how to treat it!!   Epinephrine is the way, of course for when your BP drops or elevates its indicating anaphylaxis and this is important that you intervene when your BP drops.  

I hope this helps!

Lisa