nunntrio Posted June 22, 2010 Report Share Posted June 22, 2010 I had a somewhat discouraging neuro. appointment today. I went in to see if he would do a skin biopsy to rule out sfn. He did agree to that because there was enough clinical evidence of neuropathy. But he said that it will not show anything to explain my brain fog. This is by far my worst symptom. I had always thought that POTS brain fog was caused by decreased blood flow to the brain. He said that is not possible. He said that the body does everything possible to preserve blood flow to the brain. I would have evidence to decreased blood flow to other orgrans and my extremities (which I do not) before I would have decreased blood flow to the brain. In other words he said the body will cut off circulation to other parts of the body to ensure proper brain blood flow. Is this correct? If so then does anyone know what causes POTS brain fog. I know most people's major symptom is fatigue but for some reason mine is cognitive. This Dr. also stated that my POTS is mild and should really not be effecting me as much as I feel it does. At Vanderbilt my HR increase upon standing was usually 30-40 BPM although AFT was normal. I just reviewed my report from Vanderbilt and when my HR was high my pulse pressure was 15. Is this considered mild? I am sorry if I am rambling. Why do I always leave the Dr.'s offices with more questions then answers. Thanks!! Quote Link to comment Share on other sites More sharing options...
summer Posted June 22, 2010 Report Share Posted June 22, 2010 Hi. I was told the same thing by a neurologist a few years ago. He also said that my BP drops were not low enough to cause any decrease in cerebral blood flow. Like you, my worst symptom is brain fog and my rises in HR are usually not more than 30 - 40 bpm. He told my that my "brain fog" did not make sense.Later, when I had my first TTT done by a neuro who specialized in the autonomic nervous system, he also did a transcranial doppler. This showed that I was, infact, having a greater drop than normal in my cerebral blood flow with standing. He told me that he could "see" my brain fog on the graph, and that he was not surprised when I told him it was my worst symptom. This was a huge relief to me. It actually did make sense after all. It's true that the body, when everything is functioning properly, does all it can to preserve cerebral blood flow. This is called "cerebral autoregulation", where the BP in the brain is maintained at a certain level even if the BP drops in the rest of the body. Some research has shown that this safe guard system may not be working properly in some POTS patients resulting in decreases in brain perfusion that may not be happening in normal people. Here is an abstract which your doctor should see:http://ajpheart.physiology.org/cgi/content/short/297/2/H664His explanation would be correct.... except that you have POTS. Hope this helps.Summer Quote Link to comment Share on other sites More sharing options...
TXPOTS Posted June 22, 2010 Report Share Posted June 22, 2010 My transcranial doppler showed reduction of blood flow to the brain. If blood is pooling in our legs and abdomen, it can't be upstairs in our brain as well. I take it this neurologist is not a POTS expert. My pulse has stabilized quite a bit, and I still have terrible brain fog, headaches, and blurry vision. I also get that narrow pulse pressure. Quote Link to comment Share on other sites More sharing options...
issie Posted June 23, 2010 Report Share Posted June 23, 2010 Makes sense to me. I also wonder if blood sugar issues are part of the problem. If there isn't enough glucose in the brain, this could cause the brain fog too. Since there are some of us with weird blood sugar problems it makes sense that the combination of the two - would - create BRAIN FOG. Quote Link to comment Share on other sites More sharing options...
nunntrio Posted June 23, 2010 Author Report Share Posted June 23, 2010 Thanks, for posting that article. I have not had a chance to fully read it but I will once I get my kids to bed and can focus (for some reason my fog lifts a little in the evenings making it easier to read and focus) I will definitely pass this along to the neuro. who is not a POTS specialist. Unfortunatly I do not have a POTS Dr. near me so at times I forget how uneducated most dr.'s are about this and try a local guy. SUMMER/TXPOTS - Can you tell me where/how you got a Cranial Doppler during a tilt? I think it would be hugly helpful for me. Quote Link to comment Share on other sites More sharing options...
green Posted June 23, 2010 Report Share Posted June 23, 2010 Makes sense to me. I also wonder if blood sugar issues are part of the problem. If there isn't enough glucose in the brain, this could cause the brain fog too. Since there are some of us with weird blood sugar problems it makes sense that the combination of the two - would - created BRAIN FOG.Awesome point. I think that since the purpose of blood is to carry glucose and oxygen... insufficient blood-flow and hypoglycemia go together. Quote Link to comment Share on other sites More sharing options...
lieze Posted June 23, 2010 Report Share Posted June 23, 2010 Is this incredibly scary to anyone else or is just me?I don't know if I can psychologically handle the reality of this. Quote Link to comment Share on other sites More sharing options...
nunntrio Posted June 23, 2010 Author Report Share Posted June 23, 2010 It would not suprise me at all if blood sugar levels effect brain fog. I know comsumption of carbs helps somewhat clear the fog on a short term basis. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted June 23, 2010 Report Share Posted June 23, 2010 YES, where can this test be done? My absolute worst symptom is brain fog/cognitive as well. It would be nice to know WHY and even better to actually have a test that proves it. Thanks, for posting that article. I have not had a chance to fully read it but I will once I get my kids to bed and can focus (for some reason my fog lifts a little in the evenings making it easier to read and focus) I will definitely pass this along to the neuro. who is not a POTS specialist. Unfortunatly I do not have a POTS Dr. near me so at times I forget how uneducated most dr.'s are about this and try a local guy. SUMMER/TXPOTS - Can you tell me where/how you got a Cranial Doppler during a tilt? I think it would be hugly helpful for me. Quote Link to comment Share on other sites More sharing options...
TXPOTS Posted June 23, 2010 Report Share Posted June 23, 2010 YES, where can this test be done? My absolute worst symptom is brain fog/cognitive as well. It would be nice to know WHY and even better to actually have a test that proves it. Thanks, for posting that article. I have not had a chance to fully read it but I will once I get my kids to bed and can focus (for some reason my fog lifts a little in the evenings making it easier to read and focus) I will definitely pass this along to the neuro. who is not a POTS specialist. Unfortunatly I do not have a POTS Dr. near me so at times I forget how uneducated most dr.'s are about this and try a local guy. SUMMER/TXPOTS - Can you tell me where/how you got a Cranial Doppler during a tilt? I think it would be hugly helpful for me.I had it done by Dr. Suleman in Dallas who is a POTS cardiology/ electrophysiology specialist. He has an autonomic testing clinic, so that is what you need to find. Quote Link to comment Share on other sites More sharing options...
summer Posted June 23, 2010 Report Share Posted June 23, 2010 SUMMER/TXPOTS - Can you tell me where/how you got a Cranial Doppler during a tilt? I think it would be hugly helpful for me.I had it done in Montreal, Quebec, by Dr. Schondorf. He also has an autonomic testing lab. Quote Link to comment Share on other sites More sharing options...
nunntrio Posted June 24, 2010 Author Report Share Posted June 24, 2010 SUMMER/TXPOTS - Can you tell me where/how you got a Cranial Doppler during a tilt? I think it would be hugly helpful for me.I had it done in Montreal, Quebec, by Dr. Schondorf. He also has an autonomic testing lab.Thanks, for that info. I do think this is a route I want to look into. I might try to find someone in the States to help first. I have heard Quebec is quite nice this time of year. I also really appreciate your explanation of why my neurologist was wrong in regards to cerebral vasorgulation in POTS. It was helpful. I have seen this term on the boards before but never completely understood it. Have they been able to find anything that helps you fog? Quote Link to comment Share on other sites More sharing options...
summer Posted June 24, 2010 Report Share Posted June 24, 2010 Have they been able to find anything that helps you fog?Not really... we're still working on it. I have had improvement in other ways (ie. physical stamina), but the brain fog is very stubborn. I think maybe over time it has improved some, in that the most severe fog occurs less often than it did 2 years ago, but I still have it to some degree most of the time, and it can still get really bad at times. I wish I could give a more encouraging answer. I'll be sure to post it on the board if I ever find something that really helps. Good luck. Quote Link to comment Share on other sites More sharing options...
Rachel Posted June 26, 2010 Report Share Posted June 26, 2010 A healthy body does everything possible to keep blood flowing to the brain, but we aren't exactly healthy. The autonomic nervous system controls blood flow, and when it doesn't regulate properly you might not get adequate blood flow to your brain.I have had some bouts of really severe brain fog. It was so bad that I forgot who my son was when I saw him, I didn't recognize my apartment, I could barely communicate, etc. Lying down didn't do a whole lot to relieve the brain fog. I spoke with a couple of my doctors, and they believe that the brain fog was due to a lack of proper blood flow to my brain, even while lying down. Dr. Grubb said something like, "If the system doesn't work right when you are standing up, then it doesn't work perfectly when you are lying down either." Nothing cures my brain fog, but Cerefolin sure does help a lot. I take it daily, and it makes it easier for me to keep up with conversations with my family, read, and write.Rachel Quote Link to comment Share on other sites More sharing options...
tiger Posted June 26, 2010 Report Share Posted June 26, 2010 This was my worst symptom when my pots was really bad. It got so bad I could not even stand upright for more than a few minutes. It was so disturbing my brain fog would get so bad I was confused and even had to be hospitalized my face went numb if I stood up too long. What greatly helped me was taking Lexapro. This was a miracle drug for me and I only took a low dose of 2.5mg. However it stopped working after about 9 months even increasing the dose and I was very greatful at the time something was able to help me. Something else that really helped me was lifting weights and doing leg lunges. It was difficult at the time but I really pushed myself and now my Pots symptoms have improved. Quote Link to comment Share on other sites More sharing options...
tiger Posted June 26, 2010 Report Share Posted June 26, 2010 By the way on the last persons post I notice you take magnesium and Omeprazole which both have vasodilating properties. Quote Link to comment Share on other sites More sharing options...
TXPOTS Posted June 26, 2010 Report Share Posted June 26, 2010 This was my worst symptom when my pots was really bad. It got so bad I could not even stand upright for more than a few minutes. It was so disturbing my brain fog would get so bad I was confused and even had to be hospitalized my face went numb if I stood up too long. What greatly helped me was taking Lexapro. This was a miracle drug for me and I only took a low dose of 2.5mg. However it stopped working after about 9 months even increasing the dose and I was very greatful at the time something was able to help me. Something else that really helped me was lifting weights and doing leg lunges. It was difficult at the time but I really pushed myself and now my Pots symptoms have improved.Interesting, I also get the numb face. You're the only other person that I've seen specifically mention this. I am also finding improvement with lots of weights and exercise. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted June 27, 2010 Report Share Posted June 27, 2010 I had blood flow to the brain checked via ultrasound and they found no problem... however, it was a laying down study. Would love to know about blood flow to the brain while standing -- gotta see if there is a Dr. who can do this. Quote Link to comment Share on other sites More sharing options...
ByteMe58 Posted June 28, 2010 Report Share Posted June 28, 2010 Definitely brain fog is the worst.If I sit too long, my wife says it looks like I'm staring at a spot 2 inches in front of my face.She yells at me "go lay down, go lay down" I just sat there, I thought she was talking to the dog!!! Frank Quote Link to comment Share on other sites More sharing options...
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