Making Sense of NOH
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Making Sense of NOH

September 1, 2019


JACK GERNSHEIMER: The first time I noticed the symptoms of NOH was probably about a year and a half or two years ago. I noticed that when I got up and started to walk, I was fine. At a certain point, I would say maybe five to ten seconds into the walk, I started to feel very light
headed, dizzy, kind of disoriented, and I later learned that that was not the Parkinson’s,
but NOH. DIANE MCCARTHY: When I was brought to the hospital and then they saw my blood pressure
was so low they immediately called a neurologist. and at that point he put me on, well they had to at that point, they gave me a shot to bring my blood pressure
up and then they put me on medication and then I started monitoring and realized that
my blood pressure does vary and will be normal for several days in a row but then one day all of a sudden its way down so that’s when they decided to start doing the medication. DR. ANNA HOHLER: Neurogenic Orthostatic Hypotension is a disorder where patients have difficulty with drops in blood pressure and typically by definition
it’s a drop in the systolic blood pressure or the top number of twenty points or the
diastolic blood pressure or the bottom number by ten points. DR. ALEKSANDER VIDENOVIC: The most common
symptoms of Neurogenic Orthostatic Hypotension are light headedness and dizziness. This is a result of sudden drops in blood pressure upon standing or solid changes in the body position. Other very common symptoms are overall sense of fatigue and weakness or malaise patients may become nauseous, they may lose balance and fall, or faint as the result of the sudden changes
in blood pressure. The most frightening experience was walking port authority bus terminal, coming to an elevator. No I’m sorry
an escalator, a tall escalator, and almost losing my balance, in which case, the repercussions could
have been dire. I was sitting in this chair actually speaking with you now and I decided I was
going to bake a pie, my husband was out shopping and I thought it would be nice to have
apple pie for dinner, I got up out of this chair, I felt perfectly fine, made the turn
and the next thing I knew I was on that hearth and I had blood coming from everywhere.
I didn’t even know what, where I had hit myself. This is the scary part about it. You don’t black out, it’s not like passing out. You start to fall and you can’t stop yourself. DR. HOHLER: Patients can play a big roll in
terms of their diagnosis of Neurogenic Orthostatic Hypotension because the first step is recognizing that
it’s an issue and understanding that and so they’re often the ones who will give us
the discussion about their symptoms, let us know that they might not feeling so well particularly
in standing position, and they can also ask somebody to take their blood pressure
not just in sitting but in standing. So there’s a lot of complimentary therapies and conservative measures that people can do to help decrease their
NOH symptoms. The first one is actually slow position changes, so in the morning in particular
and when getting up in the middle of the night, If patients sit on the side of the bed for
a few seconds to a few minutes before they get up, that makes a big difference in terms
of helping to stabilize the autonomic nervous system. What I do on a daily basis to limit
the effects of NOH is, I’m having more salt in my food and that apparently helps to deal with
the low blood pressure. I do blood pressure checks and that’s really important to check, I have a book in
there, and I take my blood pressure regularly and that I think people should really do. We do have conservative non-pharmacological
treatment options and we also have several medications that we prescribe to our patients with NOH. Choosing a medication for NOH
should be under the direction of a physician who is well trained in treating Neurogenic Orthostatic
Hypotension. Now that I’m on medication I don’t fall as often, which makes me feel better. I would like to see an awareness of
NOH and the fact that there are ways of dealing with it.

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  1. I am a veteran and constantly falling for about two years now, I have been diagnose with sickle cell-Thalassemia, polyarthritis nodosa, fibromyalgia, sarcoidosis in the lungs, lymphodema, anemia, and now my primary care just called me to let me know that I need to take iron because is low, but no VA doctor can tell me why I am losing blood somewhere in my body.  Now that I watched the video it make sense, I do have problems with my neurological system.  Help!!!!!

  2. I have rare disease, Mandibular & clavical dysplasia. Do any of you know about this?  I am trying to get the treatment to help me, My personal Insurance, United Health Care, Under the Obama plan has denied.  This could also be called familial partial lipodistrophy, Dunningham type w/ rare mandibuloacral dysplasia.  My mid-section is growing very large, tummy rolls, fatty tissue under arms,tissue on back of neck, on side past underarms., while my legs remain very skinny as do my hands and feet are smaller.  Also have rash on knees, elbows, and ankles.  Can anybody out there help me?

  3. Neurogenic orthostatic hypotension (nOH) – low blood pressure upon standing caused by neurological conditions – is a very common feature of multiple system atrophy (MSA). Thank you NORD for developing this outstanding awareness video!

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