Neurally Mediated Hypotension (NMH)

Mamyou

You are the first person (other than myself) who has ever discussed or inquired about NMH on a lyme forum since I have been aware of the condition or around the forums (at least that I have seen). Kudos to you!

I also fully related to the symptoms of NMH and knew exactly that I experienced this condition from the first time I read about it in Burrascano's work. It fit me perfectly. Yet I had to deal with it for a few years unti I discussed it with my (then current) LLMD, he explained it as a form of dysautonomia (= dysfunction of the autonomic nervous system; which is a broad term, but does apply) at the time he suggested xanax as treatment for ME (surprisingly this is a typical treatment for NMH - at least by those doctors who are smart enough to know anything about it ) Unfortunately, I don't like or do well with xanax (in any dose) therefore it wasn't an answer for me. If you google it, you will find alot of helpful information regarding it, treatment, etc. I am not sure what exactly has made a difference for me, but I no longer suffer from this. So, I never treated "it" but by treating other things, I have eliminated it somehow.

I feel for you. I really do. This was probably my biggest issue for along time and not one doctor (besides the LLMD I came to have) ever had a clue! It was a horrible experience for me. It could last for minutes or hours and begin with seemingly no warning or cause.

In response to @Mamyou. I've recently been diagnosed with NMH disease after 5 years of having unexplained fainting spells. Once I was finally diagnosed it all made sense and I was happy to have an answer. Since finding out I have NMH I take a Salt pill daily along with an increased intake of water. I also take Celexa (an anti-anxiety) because of anxiety that developed because I became afraid I would faint in public and I got very nervous about it. I'm trying to gradually exercise more too since that just helps you feel better all around. I completely understand needing to sit and I do that a lot. Even at a place like a party I'll typically sit down because standing too long seems to bring on the symptoms. I do get tired a lot, and chronic fatigue is an everyday symptom of NMH, so I try to get enough sleep and sometimes I take naps when I can to keep me going through the day. A lot of things have differently been effected but I try to do things as normally as possible. I'm hoping to meet with Doctors from Hopkins that do a great deal of work in NMH and see what else can be done for treatment. Hope that helps!

anyone else have these symptom and what r you doing for it.

I have found through the years that my NMH was worse when I felt the worst. When I was having a good day, I could stand for longer periods of time even though I still wasn't "normal". Evenings are usually when I do my grocery shopping because that's usually my strongest time of day. I'm back to thinking that it's more of an adrenal issue because anything can stress the adrenals...i.e. infections, a bad day, etc.

Bucci, I could not take Doxy. It made me physically ill and emotionally unstable (ok, more unstable than I usually am). I am currently on Bactrim and Cipro (free drugs thru my Giant Eagle market) which seems to be working better than the Amoxicillin and Cipro. Am also taking A-Bart and a few other supplements. I'm also doing some DMSA for metals. I was reading the Niacin posts and thinking I need to try it. I'm sorry you haven't gotten more relief than you have, but please don't give up!

I have been trying to identify what has been ailing me as well. I have had symptoms my whole life, but no one has been able to help me. My father had fainting issues which the docs had him have heart surgery, which ended up killing him. During the heart surgery episode, one of the docs mentioned NMH, so I went home and looked it up. My jaw fell through the floor as I read it! It described everything I had been going thru for the last 30 years! wow!
What I read said to use a lot of salt and water which I have been doing since then, but still it is not enough.
I use meditation which helps, but in certain situations I could explode, it's very weird.
I had my mother add salt back into their diets and my father improved some, but it was very difficult to tell after the heart surgery episode. but, back to me.
I am a controls engineer, which I am recently beginning to understand may have been a poor choice in regards to what my body could handle because of the amount of concentration required and stress.
During the early years of my career I was blessed or cursed as it may be with extraordinary opportunities which challenged my creative and technical abilities, but in retrospect may have irritated or created situations where I would collapse from physical ailments like headaches, backaches that would leave me bed ridden.
I had some wonderful years with the same company developing processes that stretched my imagination and completely wasted me. They finally got rid of me as a nuisance employee in the end.
I floundered during a poor economy from taking contract positions and side work that made me travel and work extremely hard, which has a bit of an impact on your health.
I finally found work locally with a smaller firm that pushes me, but I have been able to manage using all of the techniques I have developed over the years without any help from my local doc.
When I turned 50 I seemed to develop allergies which I treated with pseudophed products which made me feel much better. I have been using this for 8 years now, but felt I was getting some of the side effects.
So, I decided to try and become drug free! cool, this can't be hard! hahahahah
I made it about a month before the pain becomes unbearable and I went back the pseudophed and I am feeling better.
I suppose the pseudophed is raising my heart rate enough to keep my blood from pooling, but I need more during high stress times?
I still have difficulty standing for long periods no matter when or where, especially when it is very hot and humid.
I guess I am looking for some guidance of what doctor has experience with this condition around philly area?
I have not been diagnosed yet, my doctor does not want to really help me with this, and my insurance does not want to cover some of the tests required. Right now pseudophed manufacturers are getting a ton of my money! lol
Any experienced voice would be appreciated

NMH is where it started going bad for me too. There is a feeling in my body that the internal pressure will only be balanced in a flat position. The more I lay down, the better I feel but the worse it gets, so I have to resist my bed as much as I can. Going for a brisk walk helps me a little because it raises my heart rate naturally. My doctor originally said it was P.O.T.S. Have any of you heard of that? He now says he wants to treat for Lyme because what caused the P.O.T.S to begin with. It hit me hard two years ago. Before that I didn't have this weird pressure in my body.
Oh it feels so good to lay down. Tramadol helps me a little bit, because there is pain with this feeling pressure feeling too. The only time it lets off is in the evening when I could lay down. Figures, huh?
Does this go away if it is associated with Lyme and you get treated? Because that would be so awesome! I am starting doxy soon.

Thanks for the encouragement.
By the way, my daughter was diagnosed with Dystonia along with my fathers condition I think that I can suppose an autonomic disorder would make complete sense now. I have 5 brothers that are dealing with similar problems, but refuse to see how it is that this may be a factor. Non of my brothers have been impacted the way I have tho.
I have joined some of the NMH forums to look for some help too.
I will look in here to watch what is being posted.
I think with the pseudophed I can control the condition, I was hoping for a natural cure, but this may be impractical for me?
I know exactly what you are saying about having to "get horizontal", it makes perfect sense to me now.
I always would say to my wife and kids, give me a chance to get horizontal for a bit.
I have to work in some very difficult environments where I find that I must squat or move to get some relief.
I never realized that fidgeting and crossing your legs was a beneficial thing until I began researching this. I have done all of these moves automatically because my body demands it and it helped me get through the day! I have read about the other drugs available for this condition and they seem to have even more side effects that pheusophed, so I am going to stay the course and see what is dealt along the way!
Thanks everyone.

My daughter that had Dystonia was diagnosed and treated for Lyme disease, she is an environmental scientist that worked in the field for years. I am beginning to believe that she may be dealing with NMH as well or appears to be NMH when Lyme was diagnosed? I am going to point her to this forum and see if she has anything to add.
I am definitely going to pass my info on to her.
She has switched careers from engineering to art to get away from the stress and I think it has helped her some.
She does not need to deal with the daily stress of meeting deadlines, explaining things to irate neighbors of the projects she has. My discovery of my NMH may just be the thing to help many of my family members that do not know of our pre-disposition to this condition. I know this is not a NMH site, but seems like it applies to this thread, thanks for all your insight!

Since my daughter has a confirmed autonomic disorder diagnosed and the similarities with my father and siblings I am going to assume that this is most likely going to be a similar issue and not adrenals. I am currently being tested for allergies, spinal injuries, EEG, but my doctor does not want to do a TTT and I think my insurance won't cover it either. I am quite hesitant to actually have a TTT, why would I want to place myself in a position to barf all over the place and pass out? The docs wanted to do this to my father 2 weeks after he had a quad bypass! There has to be a better way like wearing a live monitor for a time period and have it report back critical info to the docs? I saw on one of the NMH forums that a guy proposed designing one, I think I will investigate this since I am a controls designer. We will see where that might go.

Any new info on this?