Has anyone become really disoriented for seemingly no reason

[LucilleKP]

Hello all, I have never posted a question before. But, I worry ---every time a new symptom pops up, I think ---"woa, what is this??" -- I wonder if it is my Autonomic Failure or what. It seems to be like most anything is.

I had a very stressful day at work yesterday. I am a psychologist at the VA, and I treat PTSD. It is tough tough work.

So, I came home and my DBP had more than doubled and my SBP was much 40 points higher than normal. Weirdly, I had this super strange experience of disorientation. I almost felt like I was dissociated or something. I hardly remember the evening. I felt like I was on drugs or something. I was super sensitive to light and even how my feet felt as they touched the ground. A noise ---even low--- left me wanting to cover my ears and scream. The really scary part was how out of it I felt. I was so confused that it felt like I was demented or something. I missed work today due to fatigue, leg pain, and high BP. Dys. symptoms MUCH worse than usual.

Has anyone had this? Am I going crazy?

[traveler69]

Firstly sorry for my bad english. You may be having deficiency in Vitamin B12, B3, B6, and protein. Because Vit B and protein are needed to regulate and maintain nerves and heart working properly. The cause may be celiac disease. Celiac disease is a condition that damages the lining of the small intestine and prevents it from absorbing parts of food that are important for staying healthy. The damage is due to a reaction to eating gluten, which is found in wheat, barley, rye, and possibly oats. The only known effective treatment is a lifelong gluten-free diet. For now, what you need to do are intake high dosage Vit B12 twice a day. Vit B Complex twice a week, and high protein everyday - you need take this Vitamins and protein this for at least 6 months. Hopefully this will help.

[LucilleKP]

Sometimes, I give my doctors suggestions for them to share with other patients. They seem genuinely appreciative.

[beema36]

The earplugs do help. I got a pair of musicians earplugs that work well for noise sensitivity.
Drs don't seem to explain things. Sometimes I think its because they don't know as they have no idea how this stuff feels.
Beema

[LucilleKP]

Thank you again ---it helps not to feel alone :-)

[LucilleKP]

This is incredibly useful information. Why didn't my neurologist explain any of this before? Well....some of this is new. Yes, I did take klonopin and just lay in bed in the dark and didn't move ---well, I did hug my dog. That was the best help and then I fell asleep. I am going to keep earplugs with me. I never thought of that. Thank you for helping me feel less alone with all of this!

[beema36]

Heiferly, This is good information. I get these symptoms, have labile bps, faint if i stand for more than 7-8 min due to hypotension and when bp is high get wide pulse pressures and when it is very low get narrow pulse pressures. When I get the disorientation it,seems more often than not my bp is on the high side but not always. This tends to make it hard for me to know if my bp  is high or low and how I should be treating it. My electrophysilogist is confused on this too so is no help. Your suggestions as always are great.
Lucille, you are definitely not alone. This is a good place to come especially now that our resident expert Heiferly is back to guide us.:)
Beema

[Heiferly]

Although it's a little tricker trying to calculate from ranges, it does seem as though in addition to your systolic BP being rather high, your pulse pressure was wider than normal (unless you were exercising at the time!) during this episode.  A high or "wide" pulse pressure (systolic minus diastolic blood pressure) is one greater than about 40 mmHg when a person is at rest.  One of the not-so-fun things about dysautonomia is that in addition to our BPs going awry, our pulse pressures can also go out of whack.  This also leads to symptoms unto itself.  I'm sure your cardiologist can do a better job of explaining pulse pressure than I can, but it may be helpful to read this:

http://en.wikipedia.org/wiki/Pulse_pressure

Anecdotally speaking, I can tell you that when pulse pressure gets very, very low, that's when syncope occurs.  The threshold for that varies by person (and I've read in some articles that people who have had orthostatic hypertension for longer periods of time tend to have a higher tolerance for these changes, likely because their body has improved at compensating over time).  When pulse pressure gets very high, some may perceive a pounding sensation with the heartbeat; for me, it's sometimes difficult to tell the difference between that and a run of tachycardia.  

I'm so sorry you had this episode.  I get disoriented like that when my BP is low and my pulse pressure is narrow (pretty much the opposite of what you had going on); it's hard when there's nothing immediate you can do to get relief.  Some dysautonomia patients do take a benzodiazepene (most typically clonazepam ... second to that I would say is lorazepam) either daily or on an as-needed basis to tackle the central nervous system sensitization that can occur in dysautonomia, which tends to cause the uncomfortably strong sensory symptoms described above.  It can also put at bay some of the anxiety that is set off by the abnormal catecholamine/neurotransmitter responses in our bodies (which can be so irritating when you rationally know there's nothing actually to be anxious about).  

Some non-pharmaceutical methods of dealing with the over-sensitization are wearing sunglasses (even inside) or wide-brimmed hats to reduce exposure to light, wearing earplugs to reduce sound exposure, avoiding strong smells/perfumes, etc.  Some people find soaking in a tub comforting if their skin feels overly sensitive, but it's important to take great care with this because even warm (i.e. not hot) water can cause dilation of the peripheral blood vessels which further exacerbates the pooling of blood and can sharply increase the risk of fainting.  Obviously, this can create a serious drowning hazard, so I recommend never to soak in warm water without supervision.  

[LucilleKP]

Thank you --it does help  know other people have experienced. I mean, I wish you haven't! But, it helps me feel that I may not be going crazy :-)

I have Pure Autonomic Failure (PAF). My BP is labile off and on. But, when I am feeling "OK", it is typically 120/60. During this diorientation time, it was fluctuating between 145-155 systolic and 50-95 diastolic. I did just lay down and try to relaxe. I was tired by anxious at the same time. I took it sitting and standing it it tending to be the same.

Thank you for any help

[Heiferly]

I can probably give a more accurate answer if you give the actual values that your BP reached, and what your "normal" BP is (if you have such a thing ... I know some of us fluctuate so much there is no normal).  Also, just to be sure, let me know if you took your BP lying down, sitting, or standing.  

Heiferly.

[beema36]

What kind of autonomic failure so you have? Also what was your bp when you took it and does it normally run high or low. This information might help people with an answer for you.
I am sorry you experienced this. I have had the disorientation feeling quite often. Nobody has explained it to me but I do know I get it when hurried or stressed and I literally have to find a quiet place to either lie down or just be still and drink a cool drink and it will pass. I find you can't push it though. Sorry this isn't a,great answer but thought it might help to know others have this. Hope you are feeling better.
Beema