Upper Airway Resistance Syndrome and Heart

[bookworm79]

I have a question, can this damage my heart?  I use a cpap but still don't think I'm getting enough air.  At least not through the day.  I always feel out of breath and often feel light headed or off balance.  I have pain all throughout my body and I have to assume the pain is from not getting enough oxygen.  The numbness and pain I get in my hands and arms can be excrutiating and even sometimes in my legs.  Even my lips go numb. I go through several boxes of tissues monthly and have them in every room of my home, car and office as it suddenly seems like I have a lot of colds/allergies.  I frequently feel like the area under my jaw is sore (lymph nodes?) and constantly have sores/slits/pain in my mouth, tongue, back of throat, cheeks.  I do have slight vitamin d deficiency and anemia that is controlled with vitamins.  Also in the last few weeks, I've had a pinching pain in my upper left abdomen under my rib area.  Sometimes I feel the pain a little lower in my left side and then also in my lower left back.  Without a cpap machine, I have a "Severe degree of Respiratory Effort-Related Arousals (RERA's)" with 39.9 events per hour.  In that 6 hour study I had 254 arousals.  With a cpap machine, I still have a RERA index of 22.6.  I still had 176 arousals in 6 hours.  I've been diagnosed with Chiari 1 Malformation, Migraines, Gastroparesis, LPR/Gerd, etc.  Everytime I mention pain and breathing to a doctor I get dismissed as having anxiety or depression.  Any thoughts, direction etc would be appreciated because I'm getting tired of being dismissed with, "It's all in your head."  

I'm 5'6", 140 pounds, female, never smoked, never drank, never done drugs, good job, good marriage, no kids, no financial issues, nothing to be depressed about.  Any thoughts or direction would be appreciated.

Thank you

[CCFHeartMD10]

I meant oxygen saturation (the probe on your finger) that are often part of routine vital signs. People with low oxygen concentration are usually quite obvious to the trained eye. It is not really possible to have low oxygen concentrations all the time in the absence of very significant pulmonary (not obstructive sleep apnea) or congenital cardiac disease.

[bookworm79]

CCFHeartMD - when you say they would be picked up by routine vital signs, do you mean as in blood pressure?  At my last doctor visit, the nurse asked me if anyone has ever told me I have low blood pressure.  I said no.  She didn't say anymore about it.  I've only ever heard about high blood pressure so I figured it must not be a big deal.  I've also noticed a drop in my body temperature over the last few weeks.  Looking back at past medical records, I usually run around 98.6-99.1.  I've been staying around 96.8-97.5.  My "blue veins" are very visible in my body and I've even had more become very visible on my face recently.  

[CCFHeartMD10]

Your situation is clearly complex. Chiari malformation type 1 can cause central sleep apnea, and difficulty breathing due to vocal cord paralysis. This second is usually accompanied by noisy breathing and is diagnosed by an ear nose and throat specialist. While some of your symptoms could be related to Chiari malformation, others such as colds and allergies are difficult to tie in with this. It is unlikely that diffuse body pain could be caused by not getting enough oxygen. Low oxygen concentrations would also easily be picked up by routine vital signs including oxygen saturation.
It might be useful to see a sleep specialist to clarify whether you have obstructive sleep apnea (not related to Chiari malformation) or central sleep apnea (which could be).
As to whether the pain is related to your heart or not, a consultation with a cardiologist may be useful. Chiari malformation has not to my knowledge been linked to heart problems, but obstructive sleep apnea can have negative consequences on your heart and treatment of it may help.

[jrbon]

I thibg I browse a papre that indicates that the obstruction produced by the Chiari, does not relates to the agravation of the symptoms. Any chance to check another neurosurgeon?.

Now the sleep issue, as I understand, RARE are difficulties to breath but they are not stop of breath, therefore they should not be a problem with oxygen but only with rest at sleep. Of course nothing to do with lack of oxygen while you are waked up. Anyway, you can get a oxypulsimeter for about 100$ to monitor the oxygen in your blood.

The RARE problem, your sleep doctor should be able to solve it , at what pressure are you using the cpap machine? Do you have any OSA or CSA? As I understand Chiari should produce Apneas no RARE.

I get you already knows this site:
http://www.apneasupport.org/about7304.html

Reading carefully the pages below:
http://www.mayoclinic.com/health/chiari-malformation/DS00839/DSECTION=symptoms

http://en.wikipedia.org/wiki/Arnold%E2%80%93Chiari_malformation#Symptoms

http://en.wikipedia.org/wiki/Syringomyelia#Symptoms

It seems that all your symptoms can be produced by Chiari and Syringomyelia (a complication of chiari) except the following:

1) RARE (if there are not real apneas)
2) Colds and Allergies. It can be related to low Vit D. What your levels are?
3) The Pinching Pain in the left side - Any chance to be gases?
4) Feel out of breath - It can be for many reasons , check with a doctor.

Do you know this page? Perhaps  it can help you:
http://www.conquerchiari.org/index.htm

As per the risk to your heart, I think a visit to cardiologist can be in order.

Jesus

[bookworm79]

Yep, already went through the gammit of neurologists and neurosurgeon.  Most doctors don't know what Chiari is and the ones that do say Chiari won't cause most of my problems and still push it off on anxiety or depression.  It's an unfortunate viscious cycle that when a doctor doesn't know, they push it off on you being mental instead of referring you to another person or saying "I just don't know."  My Chiari is not significant enough to warrant decompression surgery so I'm trying to figure out how to manage the sleep issue.

[jrbon]

I am not a doctor, but just a fast reading, makes me think that most of your symptoms are produced by your Chiari malformation.

Are you in contact with a neurological  surgeon?

The doctor that says that all is anxiety, was he aware of your Chiari malformation.

Meanwhile be sure to get Vitamin D3 medicaments (no supplements) to reach at least  60ngr of 25-hydroxyvitamin D in your serum.

Jesus