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Dino

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Everything posted by Dino

  1. HI. I was diagnosed with POTS some years back. I do not have seizures with the condition. I have chest pain, tachycardia, shortness of breath, dizziness, etc. However, I have a brother who has had seizures for several years. He does not have POTS. Last week, I called myself trying to do some cardio work --- it always make me sick. But thought I would keep trying to force my body to get used to it. I went jogging outside for 10 minutes . It was in the afternoon but still was 85 degrees, so I got hot. After coming back inside, I started to feel "crazy symptoms" . They were symptoms that I have not felt before. I did not have chest pain, palpitations or anything like that. What happened was that I started to feel like my body was drawing up sort of like in fetal position and I had a weird sensation in my head. The drawing sensation was scary. This lasted for about 1/2 an hour. I spoke to my brother about it and he told me that this is the sensastion he has before a seizure. This scares me because his seizures have stopped in heart on more than one occasion. He has damage to his frontal lobe in his brain. His seizures have made him unable to drive. Have any of you had seizures and is it a symptom of POTS or dysautonomia? Look forward to your kind replies.
  2. Thank you for the replies. I will follow the suggestions. I forgot to mention a couple of things on this dental post. One is that I have spent over $15,000 on my dental work since 2001. I broke my dental bridge chewing on something hard last week ( I know -- VERY stupid). Are the bridges that fragile? The dentist told me that it will cost about $2,000 for the repair and that I also have a cavity and in addition to this -- I have a filling in my upper right -- the filling has came about 1/2 of the way out and will have to be refilled. I was told by someone yesterday of a health center that does dental work based on your income. If yall were me, would you pursue this much cheaper method or would you stick to a good dentist. ----- I am not saying the health center dentist is not good -- I honestly don't know anything about them. Have any of you ever heard of a place like this that does it based on your income? In spite of the large amount of money I have spent on dental -- would you still not consider the false teeth? I have a brother who has dysautonomia as well. His mouth stays really dry like mine. He live in another state, but his dentist told him that his teeth are rotting and he may as well get false teeth. thank you in advance for the replies. yall are a big help.
  3. Thank you for the replies. I will follow the suggestions. One thing I forgot to mention was that I have spent over $15,000 on my dental work since 2001. I broke my dental bridge chewing on something hard last week ( I know -- VERY stupid). Are the bridges that fragile? The dentist told me that it will cost about $2,000 for the repair and that I also have a cavity and in addition to this -- I filling in my upper right -- the filling has came about 1/2 of the way out and will have to be refilled. I was told by someone yesterday of a health center that does dental work based on your income. If yall were me, would you pursue this much cheaper method or would you stick to a good dentist. ----- I am not saying the health center dentist is not good -- I honestly don't know anything about them. Have any of you ever heard of a place like this that does it based on your income?
  4. I have a problem with recurring cavities inspite of brushing and flossing properly. The dentist told me that it is because my mouth is so dry. I have low blood volume and I am orthostatic. Have any of you been more prone to having dental problems since getting dysautonomia? I have spent so much money and it looks like the problems are going to continue. I am thinking of getting my teeth pulled and getting false teeth to end this misery. Any comments on the problems with dental and your experieces with similiar would be greatly appreciated. Thanks
  5. 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
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