MommaBear

We just went to Mayo in May and saw Dr. Fischer in the adolsescent clinic for my daughter who is 17. She was diagnosed a year earlier with POTS and had just gone through a really rough couple of months, as well as a permanent migraine that started at the same time. I asked Dr. Fischer about the sub-type POTS and testing for that, and he said that while some of his colleagues are in favor of it, he felt it didn't make a difference as the road to recovery is the same. He said he may feel differently in a couple of years if more research is done, but at this point that is how he feels. Lots of tests were done, and no reason for the POTS was found, other than it started with a virus, but that can't actually be proven with any tests, you are just telling them how you got sick one day, and never got better. But it is always discouraging to spend a lot of time and money and all of your tests come up with "normal", when clearly you are anything but. BTW, Dr. Fischer is just as delightful in person as he is on his YouTube videos, and overall the staff were super encouraging. We stayed at the Holiday Inn, which is a further walk than say DoubleTree, but still within the tunnel system, which at this time you will want, since it will be cold, and if you are like my daughter, you respond to cold negatively. All the Mayo hotels were a little pricey IMO. You can find some $99 deals. Or does anyone you know have miles they could donate for free nights? Interestingly, I read the book by Dr. David S. Bell, Cellular Hypoxia and Neuro-Immune Fatigue and I believe that there is a lot of information in that book that explains what is going on, but of course, there are no testing for that. However, Dr. Bell believes with research, there can be in the future. Hopefully, you are staying some place as close to the clinic as possible so it is a short distance for you to travel to your appts. Everyone at Mayo is super nice, and the minute we looked slightly confused as to where we were going, someone stopped and asked us if they could help. One time I saw the badge of someone who stopped and asked and he was one of the VP's of Mayo. You will never find yourself stuck, as even in the tunnel/corridors, people make sure you are OK if you even look like you aren't doing well. I was amazed at the service attitude throughout the Mayo system. Good luck and hope that you find some answers and help. No meds have helped my daughter, and she is currently having a weird relapse, with new symptoms, but she has had the shaking all day long. Exercise, regardless of the pain, is the only thing she has found that helps, and patience. But she is still not well, so not sure what the cure is! Take care and hope it is a great experience for you.

Sorry to repeat what you wrote Arizona Girl, your post didn't come up when I started writing my post. I am wondering if there has or could be a survey done of the members on this forum as to those who know their sub-types and what their symptoms are and what therapies have been tried and worked/not worked. It would take some time, but think it would be an interesting study. I know there are drs who have studied their patients over time and looked at similar things, but this forum seems to have such a broad spectrum of people. Anyone think that would be worthwhile?

Thanks Arizona Girl. My daughter had a virus while living in Australia, Ross River Fever - which has now been directly linked to ME/CFS. She never really recovered, suffering fatigue, dizziness and exhaustion after the viral symptoms faded. I am currently looking at the research on ME/CFS along with treating POTS, and reading a book by Dr. David Bell, Cellular Hypoxia an Neuro-Immune Fatigue. He feels it is the core to ME/CFS, Fibromyalgia, POTS/Dysautonomia, Chemical senstivities, and Chrongic Lyme Disease. So, we are trying to wrap our heads around all of this, as its clearly complicated. Thanks jpjd59 - great article that answers my question as to the sub-types. The article lists the sub-types of POTS as the following: (quoting the Oxfordjournals article cited above) Two sub-types of POTS have been described. In the first of these, a primary neurological defect is present, possibly triggered by a viral infection. This defect takes the form of a partial autonomic denervation leading to excessive venous pooling in the legs and, sometimes, additional affection of the renal innervation resulting in a reduced plasma renin activity. The second sub-type is considered to have central sympathetic activation, termed the hyperadrenergic type.2,3 In 2005, a possible third sub-type was described that clinically presents facial and/or upper thoracic flushing, in some triggered by exercise, together with the typical symptoms noted above.4 The explanation of the finding is postulated to be the release of a vasodilator from activated mast cells, supported by a raised urinary methylhistamine.4 These patients, as might be expected, may be worsened by beta-blockers but may respond to H1 and H2 histamine blockers with or without alpha-methyldopa. This third sub-type of POTS may present raised blood pressure at times in association with flushing and offer a differential diagnosis from phaeochromocytoma. This sub-type may only be a small percentage of those with POTS but, for them, there may be a specific therapy, anti-histamines not beta-blockade.

I have been reading a lot about the sub-types of POTS here and there and have a few questions. Does anyone know of a place where the sub-types are listed as well as the criteria/symptoms that makes them unique? What tests are done to test for each sub-type? Are some sub-types associated with a viral beginning vs not. We have been struggling with this for several years with my now 16 year old daughter, but just got a POTS diagnosis on April 2. The neuro is marching down the line of drugs for the past several months, which seem to have a lot of side effects and nothing working. We have just seen a tad bit of improvement with the start of Mestinon 4 days ago. But when you are already bed ridden and a drug makes you even worse, its pretty bad off as you all know. I guess I am trying to put some logic to this process and see if we can narrow down our focus as opposed to just trying all the drugs associated with POTS and seeing what works... is that even possible - logic seems absent with this syndrome, but I do believe it is there somewhere. Thanks for any help.

My 16 yr old daughter recently has been diagnosed with POTS and has been practically bed ridden for 3 months now. She was put on Florine's and midodrine but very little improvement. Zero quality of life and massive pain in her head and muscles. She started mestinon two days ago and it's been amazing - she got up yesterday and we went out and her friends came over last night. I appreciate the comments and assessments as I do see how she could overdo it on this first initial response to the drug. But after having a really rough 3 months we are holding our breath as we watch her actually move in the right direction.