I have been experiencing air hunger throughout the day, where I just pant for air for a few seconds. It doesn’t matter what I’m doing, even when I do nothing, I can’t breath. It only lasts a few seconds but it happens all day.
I have been working with my doctor to try and pinpoint what occurs. It doesn’t happen where he can detect anything either. I have been to a cardiologist twice, with no issues. Of course I didn’t have one of these episodes then either. I past all their tests and we know they have many.
I have a pulse oximeter that I wore for a while to see if the air hunger can be measured. I found my pulse rate dropped drastically in a matter of seconds. O2 levels were fine. I have not and probably cannot check to see if my blood pressure drops. It doesn’t even last long enough to be able to get a reading.
I told my primary doctor and he feels there may be damage to the midbrain. I am scheduled for a sleep study to find out if it occurs while I sleep. The doc wants to be sure that it doesn’t happen at night and damage any organs.
I have also been going through some hormone changes. I think the air hunger has been worse since the hormone issues.
My last brain scan showed a significant growth in three of the brain tumors in the last 6 months. I went through the reports and radiologist issues, so I’m okay with that.
It does state in the VHL handbook that our bodies think it is lacking oxygen and I was wondering if anyone else can relate to an oxygen issue and tumor activity with or without hormone changes?
What does the table tilt do?
Thanks,
Gale
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breathing question
- By gale
- Posted November 12, 2008 at 9:52 pm · 9 replies
- In Health management issues
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- By TinaDiane
- Posted November 12, 2008 at 10:27 pm
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I am sorry to hear about your problems. I have not had a table tilt test. All I have had is them testing my BP when I am flat on my back and then when I stand up. Mine is off due to no adrenals, and being on low replacement hormones. I know the gene affected by VHL has something to do with oxygenation, but not sure about your symptoms. Do you have asthma?
Sincerely,
Tina
- By gale
- Posted November 13, 2008 at 8:24 am
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Hi Tina,
Thank you for your response.
I had childhood asthma. I have one adrenal gland, but that was removed in 1987. I noticed the breathing problem it more frequent over time. It happens when I'm standing, sitting, squatting, lying down. It doesn't matter.
Do you know how much your pulse rate drops when your BP drops? Do you follow a protocol of sorts when you get out of bed?
Gale
- By TinaDiane
- Posted November 13, 2008 at 9:42 am
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I don't know how much my pulse rate drops, I never checked it! I get out of bed very slowly, I sometimes have to put my head between my knees. I also add some salt to my food. I know everyone should be on a low salt diet, esp if they have kidney disease. However, because I have no adrenals, and am on florinef everyother day, the salt helps me not to pee constantly and keeps my BP at a normal level.
oh yeah, and my kidney fxn is very normal now (Thank you God).
Tina
- By gale
- Posted November 13, 2008 at 10:39 am
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I no longer get out of bed quickly, mainly because my head then feels funny all day.
I don't know what kind of salt you eat, but I will only eat what is called "Realsalt". It's more expensive, but it's not bleached, heated or altered with chemicals.
Gale
- By dizzybee
- Posted November 13, 2008 at 12:04 pm
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Gale -- this is good -- now it's my turn to help you!!!
A tilt table test is to check for any autonomic dysfunction. They will do it in a hospital in case of any problems. Basically, they will take your bp/hr while you are standing, sitting and lying down. Then they will hook you up to EKG; bp/hr; pulse and O2 monitors (if you can wear shorts to this test, b/c they like to see if blood pools in your legs). They will then tilt the table to a 70 degree angle (the angles vary depending on the dr doing the test) and monitor you for 20 minutes. If your bp drops by 20 pts or more and hr tries to maintain but then begins to drop they will dx you with Orthostatic Hypotenstion (which is what I have). If your bp drops and hr goes way up (tachy) that is what they call POTS (Postural Orthostatic Tachycardia Syndrome) and there is also one called Neurocardiogenic Syncope (but I'm not sure if you go up down or sideways with that one)
A great source of information is www.dinet.org (POTS Place) another one is www.ndrf.org they both have lots of information on all the various forms of dysautonomia. Whatever happens, though, if your cardiologist just gives you florinef for this it will not help. It will only drive your blood pressure sky high there are other medications to treat this and very, very good doctors that specialize in it.
Keep some water by your bed to drink first thing in the am. You may be getting dehydrated overnight and that causes your bp to drop. Drinking COLD water will help bring it back up.
You got my number if you need to talk.
PS i also have trouble breathing I have bradycardia and my docs have told me i don't use my whole lung to breath, i breath very shallow -- oh well brady breathing!! I do the panting too, when i'm stressed, not feeling well or over exerted. I just try to relax and do lamaze breathing.
- By TinaDiane
- Posted November 13, 2008 at 3:21 pm
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I use seasalt and regular table salt that is iodine in to to prevent goiter. I have enough problems without that happening to my tiny piece of thyroid I have left.
I take 0.1 mg florinef everyother day due to bilateraladrenalectomy, it is replacement. It helps too.
It made my BP go up when I was on too much (0.1 mg every day) but does not make it go up now. Without it I would pee to death (seriously).
My niece has POTS from some other disease and she has to drink 64 oz of water per day (she drinks smart water) or she has all kinds of problems.
Tina
- By larryinpa
- Posted November 13, 2008 at 4:32 pm
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Hi Gale,
Nice to "see" you. Your post about gulping air is fascinating. I have done this for years and never even thought about a connection to vhl. But it is infrequent. I do notice that when I experience it, then I do it several times within a day or so.
You know most of my history... I still have one adrenal, never had brain surgery, no heart trouble, physically active, am in pretty good shape. So the air gulping is not related to other interference, at least for me. I just blew it off as one of many body changes as we add years to our life story.
Could it be simply a mid-life phenomenon (for either male or female)? Or does it happen more frequently in vhl people? A good question!
Larry
- By gale
- Posted November 13, 2008 at 7:15 pm
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Hey Kiddo,
Sorry to hear you had surgery. You know if I can be of any help, please don't hesitate to ask someone else. Just making sure you're paying attention. Seriously, you know how to reach me.
I can understand...the breathing difficulty you are having could be a mid-age phenomenon. HA! All kidding aside I really do not feel it is age related. It's too weird.
I had once asked a number of VHL people if they had problems with oxygen issues ie, breathing, circulation, etc...and everyone was experiencing something. They may say no at first, but once I continued with specifics, everyone I talked to had a problem esp if they were having tumor activity.
Feel good,
Gale
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