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.

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?

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.

The theory behind most POTS patients is that parts of the vasculature are less sensitive to norepinephrine than normal due to reduced receptor expression or neuropathy. So the body shoots off extra to get these areas to vasoconstrict correctly, but the parts of the body do not have reduced sensitivity, thus feel the extra norepinephrine such as the heart where adrenergic tachycardia results. So the extra levels required to get the reduced sensitivity areas to constrict causes symptoms of excess norepinephrine in other areas.

But its a natural mechanism to attempt to increase blood flow to the brain, although it can actually cause cerebral vasospasm and other problems that result in more problems.

In other forms of POTS the body is too sensitive to normal norepinephrine, the body does not take norepinephrine out of the synapse correctly, or the parasympathetic system effects cerebral autoregulation.

I guess my point is that its hard to say whether its a normal coping mechanism to deranged blood flow regulation or the primary problem at this stage.

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.

The theory behind most POTS patients is that parts of the vasculature are less sensitive to norepinephrine than normal due to reduced receptor expression or neuropathy. So the body shoots off extra to get these areas to vasoconstrict correctly, but the parts of the body do not have reduced sensitivity, thus feel the extra norepinephrine such as the heart where adrenergic tachycardia results. So the extra levels required to get the reduced sensitivity areas to constrict causes symptoms of excess norepinephrine in other areas.

But its a natural mechanism to attempt to increase blood flow to the brain, although it can actually cause cerebral vasospasm and other problems that result in more problems.

In other forms of POTS the body is too sensitive to normal norepinephrine, the body does not take norepinephrine out of the synapse correctly, or the parasympathetic system effects cerebral autoregulation.

I guess my point is that its hard to say whether its a normal coping mechanism to deranged blood flow regulation or the primary problem at this stage.

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

Hi

Sometimes I get a ring of darker pigmentation around my lip line. Doesn't hurt - can't feel anything different about it. It's just slightly darker than my regular lip color.

Just wondering if it is just my weird body or if anyone else has had this.

Thanks

Crow

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.

Or just the bodies natural, healthy compensatory mechanism to getting blood to the brain and other critical organs when blood is pooling down south?

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.

The catecholamine level is definitely not a requirement for a POTS diagnosis. It is just an inclusion criteria for some of the recent POTS studies at Vanderbilt, not a diagnosis. I venture to guess that these levels vary from day to day in POTS patients anyway.

That is what I thought but was not sure.

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!!!!

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!!!!

I also thinks it's a misconception that because you can exercise your POTS is not that bad. I can run, but I can not make dinner for my family or sit up at a desk. I use a lap top in a recliner. The standing kills me, but I am better when moving, the faster the better. Forget accompanying my families to restaurants, getting my hair cut, etc..., The movement or increase in heart rate must get more blood to my brain.

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.

Hypertension. 2010 May 17. [Epub ahead of print]

Menstrual Cycle Affects Renal-Adrenal and Hemodynamic Responses During Prolonged Standing in the Postural Orthostatic Tachycardia Syndrome.

Fu Q, Vangundy TB, Shibata S, Auchus RJ, Williams GH, Levine BD.

Institute for Exercise and Environmental Medicine, Texas Health Presbyterian Hospital Dallas, Dallas, Tex; University of Texas Southwestern Medical Center at Dallas, Dallas, Tex; Brigham and Women's Hospital, Harvard Medical School, Boston, Mass.

Abstract

Approximately 500 000 American premenopausal women have the postural orthostatic tachycardia syndrome (POTS). We tested the hypothesis that in POTS women during orthostasis, activation of the renin-angiotensin-aldosterone system is greater, leading to better compensated hemodynamics in the midluteal phase (MLP) than in the early follicular phase of the menstrual cycle. Ten POTS women and 11 healthy women (controls) consumed a constant diet 3 days before testing. Hemodynamics and renal-adrenal hormones were measured while supine and during 2-hour standing. We found that blood pressure was similar, heart rate and total peripheral resistance were greater, and cardiac output and stroke volume were lower in POTS subjects than in controls during 2-hour standing. In controls, hemodynamic parameters were indistinguishable between menstrual phases. In POTS subjects, cardiac output and stroke volume were lower and total peripheral resistance was greater in the early follicular phase than MLP after 30 minutes of standing; however, blood pressure and heart rate were similar between phases. Plasma renin activity (9+/-6 [sD] versus 13+/-9 ng/mL per hour; P=0.04) and aldosterone (43+/-22 versus 55+/-25 ng/dL; P=0.02) were lower in the early follicular phase than MLP in POTS subjects after 2 hours of standing. Catecholamine responses were similar between phases. The percentage rate of subjects having presyncope was greater in the early follicular phase than MLP for both groups (chi(2) P<0.01). These results suggest that the menstrual cycle modulates the renin-angiotensin-aldosterone system and affects hemodynamics during orthostasis in POTS. The high estrogen and progesterone in the MLP are associated with greater increases in renal-adrenal hormones and presumably more volume retention, which improve late-standing tolerance in these patients.

PMID: 20479333

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 have been battling POTS now for almost 2 years. After being properly diagnosed this December, I have slowly regained some function from an exercise regimen and meds. I am still extremely debilitated, but I have been about to carry out a pretty vigorous exercise regimen (outdoor jogging and my recumbent bike). I was starting to see improvement, but the hot weather here in Houston seems to be setting me back. I feel like I am losing all the progress I made. I am not tolerating the heat and humidity. I imagine the option is to stay in my house all day. I am pretty much home bound, but I have been enjoying outside time around the house. My support system is here, so I don't want to move. It is tempting though because I seem to tolerate the cool weather much better. Has anyone actually moved to a cooler climate? Just curious.

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.

I feel that I should share this: the absolutely WORST POTS experience of all time for me was thermoregulatory sweat test, which had at Mayo, MN. They cover you with powder and put in you a box, like a coffin, with loud music to distract you. Then they turned up the heat big time. They had told me that it would be only so many minutes, but soon I realized that it was past the time and I was STILL IN THE BOX and about to syncope.

I started beating and begging for help when I noticed that something massive was going on in the room. Eventually, they came and told me they were "sorry" but that they had an emergency and LEFT ME IN TOO LONG! I could not breath and was unable to comprehend how it was supposed to be so blasted hot in that box.

There are no words for how sick I was, but since I was lying down, I didn't syncope.

When they open the box, they check out the powder to see where you did or didn't sweat and wash you off. By that time, they said "we are walking you out but do NOT look across the room to the other box." Duh, I looked.

They hadKILLED THE LADY in the other box from the malfunction of both hot boxes. My husband, sitting in the lobby, went up to the desk and asked where am I in that it was taking way too long. Then he sees them wheel a body bag out of my room. He went totally hysterical as they made him wait to tell him which patient died in the BOX!

This is a TRUE STORY. I asked where was my IV for sweating up a storm and being put in a defective box, and they REFUSED to give me on. As my husband wheeled me to the room, of course, I passed out cold. THEN I had terrible suffering (throwing up, all over severe pain, severe chest pain, etc.) until we waited for them to give me an IV.

If you gave me a million dollars, I would not allow Mayo to test me for anything ever again.

And natch, I had POTS and a negative result from the box test. Hope that helps.

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!!!

Hi, I must of missed this, sorry for late reply. What I would say is that emg doesn't rule out neuropathy, only large fiber neuropathy. I know that are several small fiber biopsy places in the nation. My pheresis is done outpatient at Good Samaritan in phoenix. The treatment is twice a week, so you need to be near a hospital or center that does this outpatient. I don't know where the other hospitals are. There may be one nearer you. I would call Dr. Levine's and find out if there is someone closer to where you live. Phoenix Neurological does have a web page and is getting ready to open their own autonomic lab minus tilt. A neurologist that specializes in autoimmune neuropathy is the type you are looking for. My experience at vanderbilt was similar they have a research agenda that they stick pretty close to.

I feel very lucky that l found Levine. If I hadn't asked about small fiber I would never have known he existed. The TTT and skin biopsy totally changed the course of my treatment and testing. I'm hopeful I will improve, but research, testing and treatment for small fiber is very young. The autoimmune factor is also less researched in dysautonomia's. I have had mono and been exposed to TB, HHV6 and cytomegalo viruses. Dinet and a doctor at UCLA who told me not to accept that diagnosis, made me realize that I couldn't settle for just a pot's diagnosis and that it was probably being caused by something else. We know here there a lots of other causes. I don't understand why anyone once pots is diagnosed wouldn't pursue it further.

I'm so glad that my story was encouraging to you. That is why I posted it, if I can help anyone else get to a medical conclusion faster then I did, then my ardeous course to diagnosis won't have been for nothing. Good luck with this and don't give up until you are satisfied. The fact that Vanderbilt says you should see a neuro, really supports your cause and gives you credibility.

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,

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.

i think depending on who your speaking to that about 4 out of 20 POTS patients have small fiber or long tract neuropathy that causes High flow pots in the hands and feet that is rarely visible. usually the hyperadrenergic state results in normal vasoconstriction but with excessive central adrenergic stimulation because cardiac nervation is usually intact. The body has to use excessive norepinephrine to get the hands and feet / legs to constrict appropriately but the heart and central vasculature is not impaired so is highly sensitive to this norepinephrine increase - its almost a norepinephrine resistance scenario exclusive to the hands and feet.

Other POTs patients (the other 60% or so) have either low flow POTs - reduced arm and leg blood flow and excessive vasoconstriction or the Hyper state and or normal flow POTS ( a larger subgroup) with stomach pooling and parasympathetic withdrawal and impaired cerebral autoregulation.

this gets confused because around 40% of patients have inappropriate renin activity and this tends to cross over with all groups.

The low flow subgroup is broken up into the hyper Angiotensin II reduced neuronal nitric oxide group with vasomotor failure and the NET deficiency with increased all over vasoconstriction, postural hypertension and cerebral vasospasm as the means by which cerebral blood flow is reduced.

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,

http://www.medicaldesignbriefs.com/compone...nt/article/6509

50% increase in blood flow to the brain - sounds too good to be true.

Currently being evaluated at Vandebilt.

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.