nunntrio Posted June 1, 2011 Report Share Posted June 1, 2011 I got a call from my Dr. today with test results. I went through 2 days of testing and actually got some interesting results. My tilt was consistant with POTS (I already knew this) but he did a trandscranial doppler with tilt which showed decreased blood pressure to my head. The Dr. said in a normal healthy person they should have no change in cranial blood pressure. I am almost certian this is where the worst of my symptoms are coming from.I also had a very narrow pulse pressure with tilt. I already knew this but I never had a Dr. talk to me about it. I just figured that out myself from reading this forum and reviewing my TTT. It was nice to have a Dr. confirm it. I also had a VO2 test which showed I am only fuctioning at 50% the expected range. Does anyone know how this relates to POTS? I know this is a test of how you are metabolising O2 but I do not know anything else. If anyone has more detail about this I would love to know more.My Dr. thinks my PCS is probably what is causing my POTS. He is sending me to another Dr. to discuss my options. Since I have already had an embolization done he said he is not sure doing more would be helpful. It was nice to get some results that were not "normal", I just had to share:) I sure hope this leads to a treatment plan that offers some symptom relief. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted June 1, 2011 Report Share Posted June 1, 2011 Interesting! Was the transcranial doppler done while standing? This is the test I want done more than anything and have no idea where to get it done. I think this is the key to a lot of my head symptoms. I'm sorry I don't have knowledge about VO2 or PCS. Is PCS pelvic congestive syndrome (looked it up)? Not sure how it would cause POTS? What type of Dr. did all this testing - sounds like you got a very thorough work up. I want to go! Quote Link to comment Share on other sites More sharing options...
nunntrio Posted June 1, 2011 Author Report Share Posted June 1, 2011 Interesting! Was the transcranial doppler done while standing? This is the test I want done more than anything and have no idea where to get it done. I think this is the key to a lot of my head symptoms. I'm sorry I don't have knowledge about VO2 or PCS. Is PCS pelvic congestive syndrome (looked it up)? Not sure how it would cause POTS? What type of Dr. did all this testing - sounds like you got a very thorough work up. I want to go!The transcranial doppler was done during a tilt table test. My worst symptom is horrible brain fog and I am convinced lack of blood flow to the brain is the cause. I did all this with Dr. Suleman in Dallas, he is an electrocardiologist(I probably spelled that wrong). I knew he did the transcrainal doppler which is one of the reason I choose him. I think Vanderbilt does it as well but I can not be sure. Yes PCS is pelvic congestion syndrome, sorry I should have typed it out. Basically, I have veins that have gone bad in my pelvic and stomach that are causing blood to pool. I have struggled with this for years but was told that it was not a cause for POTS. Dr. Suleman seems to think, because of my test results, that it is contributing. I will to reseach the Vo2 (volumn of o2 output)and will ask the Dr. for more info. next time I see him. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted June 1, 2011 Report Share Posted June 1, 2011 "Basically, I have veins that have gone bad in my pelvic and stomach that are causing blood to pool."Ahh yes, that makes sense. Did he give suggestions on how to deal with the low blood flow to the brain? Or is that a question for the next specialist? I wonder if a vascular surgeon would have any insight re: PCS. Quote Link to comment Share on other sites More sharing options...
Sallysblooms Posted June 1, 2011 Report Share Posted June 1, 2011 I was wondering also, what he suggested would help you with that. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted June 1, 2011 Report Share Posted June 1, 2011 Well, I see since I've seen him almost two years ago, he now does the trancranial doppler while upright. Mine was lying down.However, during my last TTT at a different place, they put some kind of sensors on my forehead that were to measure some kind of blood flow or something, but they didn't mention any results in the report. Quote Link to comment Share on other sites More sharing options...
nunntrio Posted June 1, 2011 Author Report Share Posted June 1, 2011 Ahh yes, that makes sense. Did he give suggestions on how to deal with the low blood flow to the brain? Or is that a question for the next specialist? I wonder if a vascular surgeon would have any insight re: PCS.[/quote}Yes, one of the things he wants me to do is see another interventional radiologist/vascular surgeon. I actually treated my PCS 4 years ago with vein embolizations. I saw a vascular surgeon in Jan. who did a venogram and felt that my remaining vein problems were not bad enough to cause the degree of tachacardia I have. He thought they were just a contributing factor. However, based on my receint test results, my POTS Dr. seems to think that they are more of an issue. He wants me to see a interventional radiologist who has delt with several of his POTS patients in the past. He also mentioned that multiple embolizations are not always a good idea but he wants me to get another expert opinion.As far as other treatments he wants me to exercise to help increase venus tone. I am scheduled to see his exercise physiologist. There are two drugs he wants to try me that he he said help with vasoconstriction. The Dr. wants to try these drugs in a hospital setting because I have had such bad reactions in the past. I am not looking forward to that but if there is a chance it will work I guess it is worth it. I guess the theroy is if there is less venus pooling then more blood will make it to my head Thanks for your posts Quote Link to comment Share on other sites More sharing options...
songcanary Posted June 2, 2011 Report Share Posted June 2, 2011 I suspect that my symptoms are from lack of brain perfusion as well. What drugs does he want to try? I just made an appt with my EP and it is three months away. I am having more trouble with lightheadedness and want to find out why this is getting worse. I am fascinated by this test you had; wish they did that one at Cleveland Clinic. Quote Link to comment Share on other sites More sharing options...
nunntrio Posted June 2, 2011 Author Report Share Posted June 2, 2011 I suspect that my symptoms are from lack of brain perfusion as well. What drugs does he want to try? I just made an appt with my EP and it is three months away. I am having more trouble with lightheadedness and want to find out why this is getting worse. I am fascinated by this test you had; wish they did that one at Cleveland Clinic.I was very excited to get this test as well. As I said earlier, it was a major deciding factor in which Dr. I went to. I was lucky that he was at least within a helf days drive for me. Anyway, he wants to try Midrodine in the non generic form and a migraine medication call Gafergot (I know I spelled that one wrong). I have tried Midrodine before but used generic. I had a bad reaction but Dr. said for that particular drug it is important to use the brand version. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted June 2, 2011 Report Share Posted June 2, 2011 What was your blood pressure like during testing? Quote Link to comment Share on other sites More sharing options...
nunntrio Posted June 2, 2011 Author Report Share Posted June 2, 2011 What was your blood pressure like during testing?I am not sure. I did not see the test result, I just talked to the Dr. on the phone. Traditionally my BP runs very low and does drop upon tilt, but it normally does not drop enough to disqualify for a POTS diagnosis. Quote Link to comment Share on other sites More sharing options...
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