New Medication

[Dino]

I need some advise really bad. I have dysautonomia to severe degree. I have also had asthma for a long time. I used to take inhaled steroids for symptoms. They really helped a lot. They alleviated the symptoms. About 6 years ago, after having dysautonomia for about 7 years, I became intolerant to them. They cause me to have chest pain, tachycardia, etc. I realize that you only systemically absorb some of the drug, however, just that little amount affects my dysautonomia. Dr. Robertson said they increase my already way too high adrenaline levels. I have not been on any meds for my breathing in a long time because of this. For the most part, 6 years. I have really suffered with my breathing, always gasping for air. I have had to go to the hospital with my breathing. My primary care doctor told me that I really needed to see an asthma and allergy specialist. He suspected allergies because my nose is always clogged up also. So much in fact that I consulted a Ear Nose and Throat doctor. He suggested a turbinate reduction. They stay really swollen and I cannot breathe up my nose. I could not have it however, because with the turbinate reduction, they control bleeding with epinephrine which I cannot tolerate. I went to see an asthma and allergy specialist recently. I was found to have severe allergies. I was also found to have asthma. They did a blood test that found a Very elevated IgE level. This means that my body has a really high inflamatory response going on. The asthma doctor told me that this inflamation is what is causing my asthma. He said that normally he would recommend allergy shots, anti-histamines and a new drug called Xolair and inhaled steroids. But I left the office with nothing. He said that he would need to talk to Dr. Robertson before deciding on anything. He is afraid of my dysautonomia. It's been about 10 days now and I have heard nothing. I called them back today, and was told that he had not spoken to Robertson yet.

He said that what he wanted to talk to Dr. Robertson about is a medication called XOLAIR. He wants to place me on this medication. It works by lowering the IgE levels in your body, and therefore lowers the inflamation in the lungs and helps the asthma. It is given in the form of a shot every couple of weeks. It is a very new drug. This makes me nervous. Have any of you had any experience with this drug? Do any of you have asthma and what have you found that helps without aggravating dysautonomia symptoms? I really need some advise. Any responses will be very appreciated. Thank you

Dino

[ETOLY]

Hi Dino,

I think you should call Dr. Robertson yourself. You may get answers quicker about the medication and the other treatments the allergist is thinking of giving to you. There are also many environmental controls that you can do to help your allergies. Your allergist should have a list of these. My understanding is that allergies makes POTS symptoms worse, so getting the allergies/asthma under control could make you feel better in more ways than you think.

Etoly

[Rachel]

Dino,

I'm sorry your dysautonomia and asthma are so bad. And I'm sorry you're having difficulty with your doctors. I hope that you will be able to speak to them soon and find out some answers.

I have never tried Xolair. I was on asthma medications several years ago, but they never helped much, so I've gone off. I tried Proventil, Intal, and two other inhalers that I can't remember right now. I never noticed them making my dysautonomia sypmtoms worse. But they didn't prevent my asthma either. Another thing I tried for a time was Lobelia, an herb that was recommended to my by my swim coach who also had asthma. It came in liquid form and tasted terrible, but if a few drops are put into a glass of orange juice you don't notice it. Perhaps an herb would be less likely to interfere with your dysautonomia.

Good luck,

Rachel

[morgan617]

Dino, My doctor has tried to contact Dr. Robertson on several occasions and he never has once returned a call. It might be better for you to contact him and tell him what's going on. morgan

[Gena]

Sorry for your troubles and misery. Doctors can be so frustrating. In the mean time, I would definitely do all that you can do in your home and work environment to reduce allergerns such as dust mites, mold, animal hair, carpet nasties, etc. Do you have an air purifier? You may also want to consider evaluating your diet, as many foods can contribute to ashthma, allergies and chronic inflammation. There are many non-prescription herbs and supplements available that help treat allergies and other respiratory conditions as well.

Hope you get through to your doctor soon and feel better.

[ETOLY]

Dino,

I would be careful with trying out any herbs without a doctor overseeing what you are taking. You could be allergic to something in the herbs and make things worse.

Etoly

[Radha]

what is a cpap machine, is it like an air purifier or ionizer?

radha

[Merrill]

Radha, a cpap machine helps people with sleep apnea (those who stop briefly stop breathing during sleep) contine breathing during the night. You can get tons of information by typing CPAP machine and sleep apnea into google. Here's one of the first sites I found: http://www.sleepapnea.org/cpap.htm

best,

merrill