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Tonsil Cancer 2010 side affects

Posted by taylorma @taylorma, 3 days ago

In 2010 I had radiation and Chemo treatment for tonsil cancer. I have had several side affects such as Radiation Induced Brachial Plexopathy. severe dysphagia, 2 TIAs, and finally I have been dealing with blood pressure issues. I looked this up Radiation-Induced Baroreceptor Failure:. Has anybody had any experience with this? I did get a higher dosage of radiation because my tumor in the clavicle was so big.

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56tburd | @56tburd | 2 days ago

Welcome to the club no one wants to join. I'm 20 years out from my treatment and discovered I had undiagnosed baroreflex failure about 8 years ago. It has been a very unpleasant journey trying to find the correct treatment. Drugs that lower the BP can trigger hypotension, which can be extremely rough to endure. Unfortunately, there is no cure, and quality of life is the goal if you experience both hypertension and hypotension. Unfortunately, I often experience hypertension while sleeping, and the doctor visits didn't catch this, leading to some damage to organs. After much experimenting, the following protocol has given me the best results to date: 100mg Labetalol in the early AM, 400mg before bed, and 0.05mg to .1mg of Clonidine as needed for a systolic of >165. If I'm careful about how much Clonidine I administer, I can avoid the side effects of hypotension. I have 5mg Midodrine on hand when hypotension hits, up to 4x daily. The downside is that hypertension does the most damage. It is recommended that you have an autonomic doctor on your team. A search for baroreceptor failure on Google Scholar will provide a lot of information. You've already found Mayo's webpage. Good luck!

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taylorma | @taylorma | 1 day ago
In reply to @56tburd "Welcome to the club no one wants to join. I'm 20 years out from my treatment..." + (show)
Profile picture for 56tburd @56tburd

Welcome to the club no one wants to join. I'm 20 years out from my treatment and discovered I had undiagnosed baroreflex failure about 8 years ago. It has been a very unpleasant journey trying to find the correct treatment. Drugs that lower the BP can trigger hypotension, which can be extremely rough to endure. Unfortunately, there is no cure, and quality of life is the goal if you experience both hypertension and hypotension. Unfortunately, I often experience hypertension while sleeping, and the doctor visits didn't catch this, leading to some damage to organs. After much experimenting, the following protocol has given me the best results to date: 100mg Labetalol in the early AM, 400mg before bed, and 0.05mg to .1mg of Clonidine as needed for a systolic of >165. If I'm careful about how much Clonidine I administer, I can avoid the side effects of hypotension. I have 5mg Midodrine on hand when hypotension hits, up to 4x daily. The downside is that hypertension does the most damage. It is recommended that you have an autonomic doctor on your team. A search for baroreceptor failure on Google Scholar will provide a lot of information. You've already found Mayo's webpage. Good luck!

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@56tburd
Thank you for your response I really appreciate it. I will get with doctors and try to find an Autonomic Doctor. I will also look at google scholar for information. Thanks!

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