nunntrio

I tried it before I knew I had POTS. I felt fine on it during the day but made it impossible for me to sleep. I was up all night. I tend to be very sesative to meds so you might not want go on my experience.

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?

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.

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 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!!

The fact that they mentioned doing these further tests for you is encouragiing. It sounds like they maybe willing to dig a little deeper in your case. I definitely think these tests are worth it. They are not that invasive and they hold at least the possibility of an end diagnosis. I lean towards the belief the POTS is a symptom not a diagnosis. If the QSART comes back positive there maybe somethings you can try. I believe there are people on this board doing IVIG and plasmatherisi(sp?) experamentally for this. Either way it would be nice to rule things out or in. Anyway Good Luck!!!

Thanks for posting about your experience. I am on the same path as you. I am trying to find the cause of my POTS. I have had the QSART to rule out small fiber neurpathy. It is a very easy test to have done. If this comes back posotive you know there is a problem is with your nerves. I think a skin bioposy is more sensitive but not sure. The Valsalva and several other tests are to rule out pure autonomic failure. These are also fairly easy. At Vanderbilt the had me keep my hand in ice water for what seems like forever. That was the worst part. Unfortunately these tests have yet to yeild any answers for me but if they come back positive for you they will give you some answers. I would recommend them. I am currently persuing a skin bioposy to definitely rule out SFN. I do not know anything about heart mapping but it sounds interesting. Keep us posted on your continued experience with the CC. It sounds like after your TT they started to take you seriously. I would love to find a place to go if I run into a dead end with my skin biopsy. I do not want to go somwhere if they are only going to tell me I have POTS and give me yet another BB.

Could you also give me a laymans explanation for cerebral auto regulation? I try to look these terms up myself but just end up with more questions. Thanks.

That makes sense. What is a cerebral vasospasm? Is this something that could be causing my massive brain fog?

I have something similar but it happens around my eyes. My husband can actually tell how bad I am feeling based on how dark the lines and pigmentation around my eyes are. I have had my cortisol tested and it is below normal but only slightly. My Dr. did not want to treat it which is OK with me because I am not wild about taking steriods anyway.

I agree, I like that explanation because I can actually understand it. I was looking further at my blood work this AM and found on one occasion my NE did rise on standing to 893 from 138 (they took so much blood from me I am suprised I had any left). That was the baseline for the saline study so it was a fairly benign test. You were right when you said that you NE reaction can vary.

That is what I thought but was not sure. Thanks!

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/ For some on Vanderbilt's current studies on POTS, an inclusion criteria is a NE > 600 pg/ml. The article I pasted above states the "hyperadrenergic" group often has levels > 1000 pg/ml. So, by this definition, you would not have the hyper sub-type. I have no idea what levels are in the normal population. Thank you for the response, that was a helpful article. I guess I can rule out the hyper version. The Doctor that wrote that article is one of the ones I saw at Vanderbilt. At the time I went there was no inclusion criteria for NE level. Their main inclusion criteria at that time was heart rate increase >30 BPM. Are they now requiring the >600 pg/ml for a POTS diagnosis or just for their current studies? The more I try to understand about this condition the more I realize I have to learn. There is a lot of medical terms used on this board that I am trying to understand better. It seems for every medical post I read I end up having to look up several terms. In order to understand those terms I have to look up more terms. Anyway I was trying to understand and rule out "hyperandrenergic" pots and now I can. Thanks

Does anyone know what your supine and standing NE levels are supose to look like for POTS. I got a copy of all my blood work from VANDY and mine do not seem consistant with POTS or at least the hyper form of POTS. My supine level was 88pg/ml and standing was 386 pg/ml. THANKS!!!!

It is interesting to me how differently this condition effects people. Running is out of the question for me but I can manage to stand long enough to function somewhat normally(cook shop with conpression hose on etc). Do not get me wrong I usually feel awful doing these activities but at least I can manage. I do exercise on a recumbant bike at fairly high intensity and have found no improvemet in POTS symptoms.

Interesting. Thanks for posting. I know I tend to have fewer symptoms mid cycle. I think that is what this article is suggesting.

m in The Woodlands. No, I've had no luck finding a doctor locally or even in the medical center. I have a good endocrinologist downtown who performed my renin, aldosterone and water deprivation study, but she is not a POTS specialist. I see Dr. Suleman in Dallas, but it is a challenge to get follow up due to the 4 hours difference. He formerly diagnosed my POTS after a long diagnosis battle. I'm sure he would be happy to be my primary POTs physician if I lived in Dallas. I have also considered seeing Dr. Levine just for an alternate opinion because i am still so debilitated. The two strikes against living here are the heat and lack of POTS physician in the Houston area. I ended up going to Vandy to get a diagnosis of POTS (although it was something I had suspected for a while). You would think living in such a big city we could find help. Evevyone talks about how great our medical center down town is. I think people think I am crazy when I tell them I can not find a Dr. locally to really help.

I actually live just outside The Woodlands in Magnolia off 1488. I do dread the summer here as well. I try to go out early in the AM and late evening. I can not tolerate the day time heat. I also have a hard time extreme cold, I can never get warm. I would love to live where is was sunny (high pressure) and 80 year round. Moving is not really an option for us right now. On another note, have you had a lot of success finding a Dr. in this area that understand POTS. I have an internist who has been willing to research things and has tried meds but he has very little experience POTS.

Wow, that is a truely awful story. I am sorry that you had to go through this. It sounds like a fairly simple test with little risk but that is obviously not the case. Thank you for sharing your story.

Thanks for the repy. It was helpful.

Is there a way to tell if you have high flow or low flow POTS based on symptoms or test results? I am trying to understand this condition better. Thanks!!!

I actually email my local neuro and asked of he would be willing to do a skin bioopsy. He said he would but of course I could not get an appointment for another month. I will have to confirm with him that it is a small fiber. If not hopefully he can help me find where I can get one done close by. I live in Houston which has a huge medical center so I would hope I could get one. I also hope he is open to helping me this time. Last time he blew me off but he has since received the report from Vandy confirming the POTS. You are right if nothing else my trip to Vandervbilt has given be credibility for my health problems. Like you I have a hard time excepting POTS as my final diagnosis. I understand that is a very personal decision and everyone must decide when enough is enough when it come to tests. For myself, I have not been helped by any treatments (Beta Blokers, Florinef, Midrodine etc) In fact they all make me feel 1000% worse. Because of this, the only hope I have right now of ever feeling better or having much quality to my life is finding the underlying cause and treating it. I have decided to rule out the causes one by one. At this point I am focusing on the nerves because it seems like a logical place to start considering my neuropathy. I do differ from you in that my Blood Pressure does drop slightly on the TTT and Posture Studies. I think if it rose it would be a greater indicator of a nerve problem. I would love to find a Dr. that is willing to help me with my journey. It is overwhelming to try go a seperate Dr. rule out each cause individually. I need to do someresearch, I may end up at Dr. Levine. However I would like to try someone closer if possible. There are some people on this forum who sound like they have Dr.'s that are willing to do that. At this point my Dr.'s just want to throw different drugs at me (not of which have helped) and not search for the cause. Please keep us posted on your treatment. I will be very interested to hear if it helps. The boundries of medicine have to be pushed if progress is to be made.

Thanks for the response. You seem to have a ton of knowledge so I hope you don't mind if I ask a few questions. I've read through the tpes you listed and have a basic understanding of them. How do you know which one of these groups you fall into? Or where can you go to find out?

Arizonagirl, Thanks for the reply. Somehow I missed it when you first posted it. Did you use Dr. Levine to help you get to the bottom of what is going on with you? I would go just about anywhere if there is a Dr. that is will to really look into what is causing my POTS. When I went to Vanderbilt they just tested me for the current research protocols they were working on and I did not ever see a Neuro. Yes, I think they were all Cardio. Dr.'s. However they did recommend on my discharge papers that I have and EMG because of the degree of neuropathy. Thank you for sharing your story. It is very encouraging to me. The fact that you were able to track down the cause of the POTS and treat that and not just mask the symptoms. Do you think Dr. Levine would be the best place to go if I wanted to try and find what is causing my POTS (or at least rule out the known causes)? Also, Do you know anything about other Dr.'s/Hosipitals that might do this? Thanks,

When I was at Vanderbilt in Oct. they actually did a TT test on me using this device. They did an initial TT to establish a base line then they did one using this breathing device. I was very skepitcal but I tolerated the tilt with the breathing device much better. The problem is how to apply it to everyday life. You would have to breath into it every few minutes. My major symptom is brain fog maybe I should consider keeping one on hand. They actually offered to let me keep the device but I forgot to follow up and ask (Brain Fog moment). I wish I had kept it.