CallieAndToby Posted February 20, 2020 Report Share Posted February 20, 2020 So I'm pretty much doing everything I can for hyper pots. But today my blood pressure was extremely low and I was tachycardic (I was at a hematology appt). I have not tried saline iv's or some of the medications. I have severe IC so I can only drink water or salty water and I just plain and simple can't drink much. I need a lot of rest from also suffering from severe ME. Anyhow I live in Tallahassee, FL and I've seen Dr. Cox there are many treatments she won't do. I've been calling another guy all day and they don't pick up. I can't travel to vanderbilt or some far place bc I'm just too ill and we don't have the money to do it. Used to see Dr. Thompson in Pensacola but he started a new practice and not seeing any new patients. Any recommendations for someone in North Florida, the surrounding area, or south GA? I should add that the most helpful thing for my pots was ivig but insurance would only pay for 6 months because it was for another autoimmune disease. Quote Link to comment Share on other sites More sharing options...
Pistol Posted February 20, 2020 Report Share Posted February 20, 2020 59 minutes ago, CallieAndToby22 said: But today my blood pressure was extremely low and I was tachycardic I am sorry you are going through that. In most cases of low BP and tachycardia ER's administer IV fluids, since both symptoms together can indicate dehydration, and the fluids are given to increase BP and therefore decrease HR. This alone should - in my experience - qualify you for IV fluids. This is the only treatment that is effective in my case, to treat an exacerbation of POTS - whether it is high BP or low BP. Many doctors do not like to give IV fluids for POTS, however with your symptoms it is an appropriate treatment, even if you did not have POTS. So I do not see why you should be refused to receive them, if you would ask for them. Quote Link to comment Share on other sites More sharing options...
CallieAndToby Posted February 21, 2020 Author Report Share Posted February 21, 2020 3 hours ago, Pistol said: I am sorry you are going through that. In most cases of low BP and tachycardia ER's administer IV fluids, since both symptoms together can indicate dehydration, and the fluids are given to increase BP and therefore decrease HR. This alone should - in my experience - qualify you for IV fluids. This is the only treatment that is effective in my case, to treat an exacerbation of POTS - whether it is high BP or low BP. Many doctors do not like to give IV fluids for POTS, however with your symptoms it is an appropriate treatment, even if you did not have POTS. So I do not see why you should be refused to receive them, if you would ask for them. I'm going to try and get them. I got in touch with that doctor and I know he does saline iv. Quote Link to comment Share on other sites More sharing options...
Pistol Posted February 21, 2020 Report Share Posted February 21, 2020 @CallieAndToby22 - I am glad, I have no doubt it will help. Let us know if you feel better - and hang in there! 😉 Quote Link to comment Share on other sites More sharing options...
CallieAndToby Posted February 21, 2020 Author Report Share Posted February 21, 2020 6 hours ago, Pistol said: @CallieAndToby22 - I am glad, I have no doubt it will help. Let us know if you feel better - and hang in there! 😉 Well my last cardiologist refused to do iv infusions and it has helped my friend so much. Do you meet people with IC as well? I can't drink much, I just can't. Because of ME I have to rest a lot and the IC already makes me go to the bathroom a lot, I drink as much as I can, usually salty water with the salt tabs. Quote Link to comment Share on other sites More sharing options...
CallieAndToby Posted March 5, 2020 Author Report Share Posted March 5, 2020 The local cardiologist is not accepting me. And today I got diagnosed with iron deficiency anemia which has only showed up on basic labs as high platelets. Finally someone realized they've been high since 2005 and sent me to a good hematologist. I'm just frustrated, it's pieces of a huge puzzle and I don't think this will get solved. Nothing can be for ME/cfs unfortunately, but something can be done about the IC which we're looking into embedded infections, and something can be done about anemia, but I STILL CAN'T FIND AUTONOMIA SPECIALIST. I live in Tallahassee and can't go on long trips I've gotten so fatigued. Is there anyone in Jacksonville? Southern Georgia? I also need an mri of my back to check if my spine is affecting bladder. I need someone who can read a PET brain scan and nobody at Shands could. Signing off, incredibly tired. Quote Link to comment Share on other sites More sharing options...
Sushi Posted March 5, 2020 Report Share Posted March 5, 2020 On 2/20/2020 at 1:16 PM, CallieAndToby22 said: Used to see Dr. Thompson in Pensacola but he started a new practice and not seeing any new patients. He was my doctor too. If he is not seeing new patients and "old" patients like you, who is he seeing? He helped me a lot. Quote Link to comment Share on other sites More sharing options...
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