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Posted

I have a few questions about hyperpots. I know some medications make this condition worse.

Do you have to be careful with fluid intake and the amount of salt you take in each day.

Are there certain foods that make this condition worse?

Does a specific diet seem to help you keep it under control?

I have read about hyperpots and it's symptoms but have not really come across any articles that says what has been helpful in general. Any information you could provide would be helpful.

Just to give you an update on my son. He had blood work for HLA B27 Antigen, the Autoimmune Evaluation Serum test , comprehensive metabolic panel, and magnesium levels done this last week. Some of these test will take at least 3 weeks to get back. He is still has tremors/shaking and not able to go to physical therapy. Tried Vyvanse yesterday to see if it would help with tremors/shaking and sleep issues. It made things worse, developed a bright red rash, made tremors/shaking worse, and sent blood pressure way up. Just another medication to mark off the list.

Posted

I took adderall when my "POTS" started. That medication certainly made them worse in addition to any amphetamine or Ritalin type medication.

I cannot help on the rest.

Hopefully there will be answers with these tests and a proper diagnosis comes, as POTS of any type is only a syndrome. Thus, only symptoms are typically treated.

Posted

It would appear that in the realm of hyperpots there exists different subtypes and very individual treatment plans and responses. From what I have read lately the prevailing thought seems to be that most hyperpots patients are hypovolemic. For myself, the recommendation was a starting point of 6gms of salt and 2.5 liters of fluid daily. I do benefit from it in terms of some symptom reduction. In regards to foods and diet I follow a very specific diet as outlined on my profile and have found it to be helpful for me. Dietary fats are my worst enemy as they increase the workload of the stomach, slow down digestion and cause what I perceive as postprandial pooling which is miserable and results in a diversion of blood away from more vital places. As far as problematic medications go I was told to discontinue elavil as it could worsen my pots symptoms. Additionally any medications that had a diuretic effect could be problematic. I was advised to replace lisinopril with clonidine. In the end it's still trial and error even in the hyperpots crowd as we all have such individual needs, responses and reasons for our condition. I wish I could be of more help.

So sorry your son is not improving. I hope you get some answers with his next lab results.

Janet

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