Neurally Mediated Hypotension (NMH)

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Mamyou
Regular Member


Date Joined Aug 2010
Total Posts : 317
   Posted 8/25/2010 3:26 PM (GMT -6)   
I read Dr. Burrascano's Guidelines 2008 information on turnthecorner.org and was absolutely astounded as how many of the symptoms/side effects/or whatever I have had for years and nobody could put a name to them.  One of the biggies is neurally mediated hypotension (NMH).  The thread on "weak legs" made me want to bring up this subject.  Dr. Burrascano's description  "...and an unavoidable need to sit or lie down" (along with dizziness, fainting or near fainting, shakiness after exertion and prolonged standing, etc. etc.) really hit home.  Even on my better days, for years, I could not stand for any length of time to shop, visit, or anything else that required standing more than a few minutes.  After a lot of reading, I thought it was an adrenal issue.  Now from my own persistence, it doesn't appear to be, or if it is, not entirely....but best of all....I'm not crazy.  Everybody always thought I was lazy because I was the one looking for a chair to sit down.  How many of you are bothered by this, and how have you adjusted your activities to avoid or handle this affliction?  Better yet...Has anybody had any treatment for NMH.  If so, what was it and did the treatment help? 

OneWearyChick
Regular Member


Date Joined Jan 2010
Total Posts : 109
   Posted 8/25/2010 4:40 PM (GMT -6)   
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 smilewinkgrin ) 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.

madrivergirl30
Regular Member


Date Joined Aug 2010
Total Posts : 205
   Posted 8/26/2010 8:00 AM (GMT -6)   
Ditto on everything that's been said. That piece of the Guidelines jumped out at me, too... I spend 95% of my time laying down. Yes, I have weakness and pain, but the overwhelming need to sit or lie down is another whole feeling on its own.

ACA0149
New Member


Date Joined Mar 2011
Total Posts : 2
   Posted 3/13/2011 7:52 PM (GMT -6)   
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!

bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 3/14/2011 1:00 PM (GMT -6)   
WOW..
this is first time I hear of this and it is the biggest issue for me.

In fact I can't just sit in a chair. I have to lay up in bed.

I can't believe someone is actually describing this and that something like zany would help.

It is horrible. I can't stand long enough to make dinner and clean up.

so what is the treatment for this? xanax? doesn't that make you sleepy?

my doctor gave it to me to help sleep and I feel like it does nothing.

I can't keep taking all these drugs and really not dealing with the infection.

I feel like I am so far gone that I am just making more trouble even if i did have $$ for abx treatment.

I am still waiting to see one of my fellow forum people after being on this forum over a year now to see who is making it to the other side and has an active functioning life .

so far I am hearing more nightmares. My one small bout with doxcy I literally lost my mind.

the one time I did do zethromycin or zethromax was only 500mg 3 time a week and only with EDTA chelation before each treatment. The the IV work was all detox for metals and demineralization and ozone all of which gave some relief but I am no better for it now months later.

I would love an answer to this NMH. another name for a condition of unanswerables to add to my list.

please anyone who knows more about this ?????
20 yrs of doctors . DEC. 2009 tested positive for lyme, bartonella, ehrichiosis, HHPV6, chlamadyal pneumonia .
parasites :strongylides, diaoebia fragialis, hook worm.

Hep C ....fibro, rhumatoidal,depression,

bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 3/14/2011 9:05 PM (GMT -6)   
anyone else have these symptom and what r you doing for it.
20 yrs of doctors . DEC. 2009 tested positive for lyme, bartonella, ehrichiosis, HHPV6, chlamadyal pneumonia .
parasites :strongylides, diaoebia fragialis, hook worm.

Hep C ....fibro, rhumatoidal,depression,

bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 3/15/2011 11:34 AM (GMT -6)   
one weary cick..what do you think it was that made this condition go away?
20 yrs of doctors . DEC. 2009 tested positive for lyme, bartonella, ehrichiosis, HHPV6, chlamadyal pneumonia .
parasites :strongylides, diaoebia fragialis, hook worm.

Hep C ....fibro, rhumatoidal,depression,

Mamyou
Regular Member


Date Joined Aug 2010
Total Posts : 317
   Posted 3/17/2011 10:00 PM (GMT -6)   
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!

bbcoach
Regular Member


Date Joined Jan 2011
Total Posts : 23
   Posted 3/18/2011 12:40 PM (GMT -6)   
I have this so bad at times that (I coach high school basketball) during the National Anthem before a game, I actually struggle to remain standing for the whole thing. On a side note, sometimes my hands hurt so bad that I have to have my assistant coach shake hands with the other team instead of doing it myself.

DLWit
New Member


Date Joined Mar 2012
Total Posts : 5
   Posted 3/12/2012 6:34 PM (GMT -6)   
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

borderlyme
Forum Moderator


Date Joined Jul 2011
Total Posts : 1486
   Posted 3/12/2012 8:51 PM (GMT -6)   
Hi, DLWit - I'm so sorry to hear about all you've been going through, and I hope you can find the answers that you need!

It's my understanding that with NMH, the cause, and unfortunately the treatment, is relatively uncertain. For a lot of us here, similar symptoms will come about as a result of Lyme disease and/or co-infections, and will often dissapate with treating the infections. It doesn't sound like you're saying you have Lyme disease, unless I'm mistaken, so I don't know how much help we can be of to you. As with all of these confusing and mysterious illnesses, your best ally is research, research, research!
Co-Moderator, Lyme Disease Forum

Shinji
Regular Member


Date Joined Mar 2012
Total Posts : 122
   Posted 3/12/2012 10:42 PM (GMT -6)   
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.

Shinji
Regular Member


Date Joined Mar 2012
Total Posts : 122
   Posted 3/12/2012 11:30 PM (GMT -6)   
Oh by the way, you guys rock! THis is the first place that I have been able to talk about NMH and have people understand the feeling of having to lay down.

DLWit
New Member


Date Joined Mar 2012
Total Posts : 5
   Posted 3/13/2012 7:16 AM (GMT -6)   
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.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 3/13/2012 11:53 AM (GMT -6)   
Hi DLwit!
Welcome to our little spot! Have you been diagnosed with or do you suspect that you may have Lyme or one of the other tick-borne infections?

If you haven't already, it would be beneficial for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of relevant information, symptom lists and informative links that have been put together by our members here! Most of those who have read through it have said that it was very helpful!! If you can 'see' yourself in the symptom lists, then you really need to be seen by a specialist - a LLMD (Lyme Literate Medical Doctor). If you need help in finding one, we can provide links to places that help with finding one.

We also have a pretty good search function on this forum to help you narrow down your search for information from past posts. We must be our own health advocates now and the best thing to arm yourself with is knowledge about our infections and the different ways to treat them!

Tick-borne infections can cause any autonomic disturbance, along with a whole host of other issues, as you will see in the Master Symptom list in our "New to Lyme?" thread.

We look forward to getting to know you better through your posts!!
Co-Moderator, Lyme Disease ;)

Treating with Acupuncture, Traditional & Modern Chinese Medicine & Western Herbs. Before tx, I had all but 20 of the symptoms on the "Master Symptom List"

"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP

I break up my post because my eyes have been effected by TBI's as well, making long paragraphs very hard to read.

DLWit
New Member


Date Joined Mar 2012
Total Posts : 5
   Posted 3/13/2012 2:10 PM (GMT -6)   
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!

mercuryb
Regular Member


Date Joined Feb 2012
Total Posts : 253
   Posted 3/13/2012 2:37 PM (GMT -6)   
this is interesting as the need to get horizontal and feel comfortable in that poistion as opposed to standing extends to people with low adrenals as adrenals govern blood pressure..

also salt water is one of the thngs that Dr Wilson (Adrenal Fatigue Book) and others suggest (salt drinks) for treating adrenals as he says adrenal weakness is often an imbalance of sodium in cell

the fact that "hypotension" is i the name of the illness which again is often associated with low adrenals

I also ahve been thinki that low blood pressure means less blood is pumped or its slower being pumped which increases your liklihood of fibrin and atrteriosclerosis, whuch interestingly enough can also make you light headed, weak when standing as your body has to work harder to pump blood through your body..i think the two work together

and we know that bugs create fibrin as does heavy metals
Bartonella just started treating, severe burning in legs; hands getting numb; eyes filmy and strained, diminished sight, significant neuro-cognitive problems.
living streams (Derma, Probiotics & Flora PM which i believe eliminated liver flukes) Did 5-6 MagVIt C IV's and this seems to have healed gut but created major detox) Rifing-perl, lactoferrrin-big gut neuro herx , valtrex 4 ebv to raise WBC

DLWit
New Member


Date Joined Mar 2012
Total Posts : 5
   Posted 3/14/2012 9:16 AM (GMT -6)   
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.

DLWit
New Member


Date Joined Mar 2012
Total Posts : 5
   Posted 3/28/2012 11:33 AM (GMT -6)   
I have been treating myself without a diagnosis, but have been trying to get one.
My doctor doesn't want to accept that I have NMH, the insurance company won't pay for testing.
I have been using all of the physical techniques everyone else has discovered by what my body has been telling me to do.
I always had problems heat and with cramping in my legs and feet, so I started drinking tons of gatorade, which worked very well. I make sure I have at least 3 - 4 gatorades each day, more when I am more active.
I have switched all of my table salt intake to sea salt to make sure It gets into me better.
All of this has helped me, but is not enough during higher stress periods like when I am working hard on a project or allergy periods, things like this. Through trial and error to relieve the pain I started taking advil 20 years ago, which led me to advil cold and sinus, which contains sudaphed. After years of trying to get off of the Sudaphed I finally realized it was what was making me feel so much better. I had assumed that Sudaphed was an antihistamine when it is not, it is what I heard called a vasal constictor, correct me if I have this wrong. It boosts your heart rate forcing more blood to circulate, easing all of the pain, but the blood vessels are constricted not allowing the blood to pool in the legs. I have gone back to using the CVS brand of Sudaphed based on some research into the ingredients which I learned that the CVS brand is better for you because of the fillers contained in them compared to the name brand. It has taken me 50 years of trial and error to get to this point and I am feeling much better as long as I take the Sudaphed. Depending on the type of autonomic disorder and the effects/symptoms will determine if this will work for you. I would suggest trying a 12 hour capsule once a day to start and then wean yourself down to what your body needs after you are feeling better. I have been able to get away with a 30mg Sudaphed daily when the symptoms are light. Hope someone gets this and can benefit from my experience.

USA America
New Member


Date Joined Mar 2013
Total Posts : 8
   Posted 3/22/2013 8:24 PM (GMT -6)   
Any new info on this?
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