Psalm 23

A huge congratulations to you Katybug. I feel the excitement with you. It is such a wonderful feeling when you receive the good news. Besides the monetary benefits, feeling like the seriousness of your condition has been recognized is priceless. I still get teary when I think about the day my award notice came in the mail. I am so very happy for you. Janet

I think it's certainly worth giving beta blockers a try if that's what your cardiologist is suggesting. Sorry, I actually posted my experience with beta blockers under your chest pain topic. It's really trial and error with regards to medications.

Andybonse I also experience chest pain/discomfort on a fairly regular basis. It can be sharp, stabbing, crushing or just a feeling of severe pressure. Except for the pressure type pain the other types of pain are always left sided. It can occur with activity or at rest. The pain can be very brief or lengthy and immobilizing. I do have cardiac abnormalities but have been told by my cardiologist that the chest pain I am experiencing is not related to my cardiac condition but must be pots related. Since getting my tachycardia under control the chest pain problem is much improved from where it was. Alex, I have had chest pain problems with beta blockers as well. When I was first diagnosed with pots in 2006 my cardiologist kept prescribing large doses of different beta blockers I could not tolerate so I just dealt with being tachy until 2011 then between clonidine and mestinon the tachy was under control but then as time went on my cardiologist here felt it necessary to add in a small dose of labatalol that resulted in such severe chest pain I thought I was going to have to be taken to the ER so that med was dcd and we tried propranalol 10 mg bid which resulted in even worst chest pain. Now a year later I am taking propranalol 5 mg bid in addition to my other meds and have not had the same severe chest pain experience as before. Must have been dosage related. I did decide in the past few days to dc the propranalol myself as I am now having problems with brady and severe hypotensive episodes. Here is just one of many articles addressing pots and chest pain; Raj et al. The following popper user interface control may not be accessible. Tab to the next button to revert the control to an accessible version. Destroy user interface control[8] suggested the chest pains experienced in POTS are almost never thought to be due to coronary artery obstruction, but may be associated with electrocardiographic (EKG) changes in the inferior leads, particularly when upright. They suggest the left sided heart pain common among POTS sufferers is due to differences in heart chamber pressures, abnormal heart wall motions, and/or nerve damage. However, based on the Qi Fu's study The following popper user interface control may not be accessible. Tab to the next button to revert the control to an accessible version. Destroy user interface control[21] the chest pain may be associated with reduced blood supply to the heart, hence ischemia, which will result in the angina like chest pain. I know that chest pain can still be a frightening thing to deal with in spite of being told that it is a normal pots symptom. I think some of the difficulty in all of this is being ably to identify what goes beyond a pots symptom and moves into something more serious. I guess that's where trusting your own instincts and that of your doctor come into play. I'm sorry you are having to deal with this and at such a young age especially. Janet

Maybe I better rethink the morning coffee habit after hearing the convincing arguments against. In theory it is probably one of the worst things one can consume with hyper pots but I suppose I have convinced myself otherwise in favor of what I suppose are short term benefits. I do crash after even a short easy walk. Maybe the crash is more post coffee related than walk related. I crash on and off all day so it's hard to tell. In light of all the convincing arguments against coffee consumption though I will try eliminating coffee again and see what results it brings. Janet

Anna, I'm sorry. I meant to say three children and yourself of course.

Anna, You,re welcome. I wasn't sure if I expressed myself very clearly in my last post. I have a serious problem with that. I guess what I was trying to convey was the idea that maybe it could be a situation in which a drug induced haemodynamic stabilization is occuring. Hopefully others will chime in with their thoughts as well. My heart goes out to you. I can't begin to imagine all that is involved in having two children with serious health issues. Janet

Hi Naomi, No, you are not being overly sensitive. Irritated is probably the mildest word I would us to describe my feelings. Having been the recipient of comments like "your problems must be related to anxiety or stress". It makes my blood boil and my hair stand on end when psyc issues are brought to the forefront in places where they don't belong. The authors really seem to have a negative bias in general and as Alex pointed out they do not even present accurate and current information. Thank you for following up on this. Janet

Carrie, I should also have included informative in my previous post to describe your lecture. I plan on re watching portions of it that became a bit complicated for me to follow. I have also found that mestinon helps me with thermoregulation problems as well as other issues. Thanks again. Janet

Anna, I also wanted to say how glad I am to hear that your children have benefited to some degree from taking domperidone but so sorry that they continue to be so very symptomatic. Issie, What you are saying makes sense. I wonder how high a standing NE level is required to result in a standing dopamine level to rise above what is considered a normal range. I'm sure there are different variables involved in all of this.

Anna, It seems plausible to me. If the domperidone is resulting in reduced vasodilating which would decrease pooling and on top of that you have an increase in volume due to a natriuretic inhibition then I should think that would have effect on a TTT result. I would think something along the lines as having a TTT done while on pots meds that result in vasoconstriction and volume expansion. Just a thought. Janet

I must be one of the odd hyper pots patients as I seem to benefit from a cup of organic coffee ( with a good splash of almond milk in it ) in the morning. But only after I have eaten a small meal, salt/fluid loaded and taken my medications first. I suppose It helps push me into the next part of my morning routine which would be a walk. If I go past drinking a cup or try to have more in the afternoon I would be over run with the jitters and have increased difficulty sleeping. I guess we all find different things or routines that benefit us. Mornings are the absolute worst for me in terms of overcoming those flu- like symptoms that try to keep one from getting out of bed. I had actually read the Dinet page of things to avoid a while back and eliminated coffee for a short time in an attempt to try anything suggested that might help my condition but in my case I just felt the worst for it. Janet

I can't vote because I have not been to any of the facilities you have listed. I have been to Mayo, Scottsdale, AZ however and was very impressed. I will be returning for a follow up visit.

Rama. Thank you so much for all the amazing amount of information shared, I can't imagine how much time you invest in research. I find myself rereading over your posts and trying to understand the meaning of some of them. I would have thought having a nursing background helpful but not the case. I am grateful though because you have challenged my foggy brain to reach for greater heights and for that I am grateful. Janet

I try to follow a somewhat modified anti-inflammatory diet ( Dr. A. Weils ). Because of GI issues and postprandial pooling I have discovered over time that a mostly vegetarian ( I do still eat small amounts of white poultry and wild caught fish ), very low fat, low/med. fiber and as organic as possible diet helps lessen my symptoms. I also eat small, more frequent meals. I have entertained the idea of going vegan but have not yet fully embraced it.. Have you ever had a gastric empty scan Aimes ? Some of what you describe in your last post sounds like gastroparesis symptoms. It helps to know if that is one of your issues as then you can have a greater awareness of what foods will potentially cause you problems. I have a problem in that too many carbs consumed at one time causes distention, tachy etc. for me as well and believe as you do Ryan that it is related to a large diversion of blood going to the stomach ( postprandial pooling ). Any food that is slower to digest can potentially increase this problem. I have found that wearing an abdominal binder helps immensely in reducing what feels like a large accumulation of blood. I used to have a large organic vegetable garden but just don't have the energy for it anymore either. There is nothing like growing your own organic veges. Lets be optimistic that one day we will all be well enough to start one. Best of wishes to you . Janet

Carrie. Thank you so much for sharing your well thought out and organized presentation. I finally had an opportunity to view it in its entirety and was very impressed. I gained a much greater understanding of what NET deficiency entails. Janet

So sorry for my last long, inappropriate and not relevant to this topic post. I wish I had something more to contribute in regards to all the thoughts and theories behind hyper pots but I think you have it all pretty well covered. There would appear to be a number of possible root causes and subtypes that continued research will reveal.

Kitt. NMPotsie is absolutely right about neurontin. A lot of careful consideration must be given before deciding to take it. It is not a drug to be taken lightly. For many it can cause severe side effects and must be slowly tapered down if you want to discontinue it. I was first prescribed neurontin in 2006 for excruciating shingles pain and it was extremely helpful but after about 3 months I discontinued it as my pain was tolerable. About 6 months later I started to develop chronic fibro like pain in my mid to upper torso and was prescribed lyrica which I took for 18 months but started to develop anxiety and depression symptoms that were totally not me so I realized I had to get off of it and went through 2 weeks of the most horrible withdrawls ever even though it was a slow taper off. After that I started taking the elevil 10mg which helped a lot maybe in part because my pain level had started to reduce. . Somewhere around Feb. 2012 I got slammed with severe post herpatic neuralgia in my right arm which radiated across my scapula and clavicle. I have a very high pain threshold but I was in agony so back on the neurontin I went. I thought it would just be temporary but when the post herpatic neuralgia let up, I started developing a problem with burning, stabbing, griping etc, pain in my feet and legs so instead of discontinuing the neurontin I was increasing it. The maximum amount usually prescribed is 3600mg/day. I hate taking any kind of medication but I don't know what else to do at this point. I hope at some point to be able to at least reduce the dose back down but since my what would appear to possibly be SFN pain is only worsening and I am not sure what to do about the sleep issue I am in a bit of a dilemma. I can't say that I have noticed a problem with side effects but I have only been on the 2400mg/day for about 7 month now. I don't know what I would do without neurontin but I would consider it to be a last resort drug . Thank you for the Methyldopa information. I'm so glad it helps you with sleep. Since clonidine does not help with sleep maybe switching from that to methyldopa would be helpful for me especially if I am able to discontinue the neurontin again. Time will tell. Elevil is not recommended because it is an anticholinergic drug. After experiencing failure with melatonin I called Mayo back and asked could I just go back to taking elevil and was told no so I never took it again. I would love to go back to taking it but if the neuro feels that strongly about it then I won't. To everyone else, thank you so much for all the wonderfully insightful, interesting and educational information you have provided. It is so appreciated. Janet

I am another one of those very high NE level, very labile b/p (80's/50's-200/110) with a salt loading recommendation in addition to medication and other therapies. I am presently consuming 9gm and 2.5 liters fluid per day. Janet

Kitt. The pots meds I take are clonidine 0.1mg bid, mestinon 60 mg tid, and propranalol 5 mg bid.The clonidine 0.1mg was meant to be a starting dose but after upping it to 0.15mg and not tolerating it I had to go back to 0.1mg and at that point the small propranalol dose was added in. Based on my high NE levels ( supine was also high at I236) I would be classified as a hyperpots patient but I'm reluctant to refer to myself as such because I left Mayo as a hyper response patient so I am not really sure what I am. I seem to have a mixture of both hyperpots and neuropathic features. I have been developing many new and worsening problems in the last year so I plan on a return Mayo trip and will hopefully gain better understanding of my situation and any new recommendations for treatment. In regards to sleep that was not helped by any of the pots meds. Prior to Mayo I had been sleeping fairly well by taking elevil 10 mg at bedtime (it had originally been ordered for sleep and pain ) but was told elevil worsened pots symptoms so I needed to discontinue it. I was advised to try meletonin for sleep but it did nothing for me. The only thing that finally helped with sleep was neurontin which was prescribed for pain. It wasn't until I had reached a dose of 2400mg a day that I realized I was able to sleep for stretches of 6-8 hours at a time. Prior to that I seemed to wake up every 2 hours. Something I'm sure you are very familiar with. So horrible. I am extremely noise sensitive so I have found wearing ear plugs and running a fan helps with sleep. Thank you so much for the dopamine information. I guess I kind of figured if it were a significant finding it would have been brought to my attention. The dopamine information source I made mention of is part of dysautonomia network's web site. If you look under potsplace and mechanisms of pots you will find it listed there. I'm not sure about a specific link though. What medications or things in general have helped with your condition ? Thank you Janet

I can not help but ask what do you cook with in place of oil as we did hear at least a few times " No Oil ". I do a lot of grilling of veges and tofu and vege stir frying and like many others I am sure thought that olive and coconut oil were quite acceptable. Janet

My dopamine level was also elevated at 56 but the focus seemed mostly to be on my NE level which was 2922 so nothing was really said about the dopamine level being elevated. Something I want to ask about next time I go to Mayo because I have since wondered about the significance of an elevated dopamine level. I did notice on the Dinet Mechanisms of Pots page a paragraph about a hyperdopaminergic state and some references. Janet

Thank you so much Alex for sharing what would appear to be a very relevant article. I do not have migraines but past syncapal event and OI (POTS) are problems I do have. So I suppose that would explain the presence of lesions on my brain MRI. Not terribly reassuring though for one with a chronic OI condition. It makes me think of a comment made to me a few months back by my Opthomalogist. He said I wonder if a chronic cerebral hypo perfused state can cause permanent brain damage. I guess as Katybug expressed earlier, the information doesn't surprise me. Thank you for providing some answers. Janet

Kris4444. I wear a Gabriella breathable elastic abdominal binder. They do unfortunately stretch out faster than I would like and require periodic replacement but I wouldn't be without one. I order them from Amazon.com. Janet

Hi Issie, Wow. That was great information. Thank you so much for sharing. I'm going to keep moving in the vegan direction. It is a bit of a process but certainly achievable. Besides improving cardiovascular health, there are of course the immune system benefits which I know you have pointed out before. Janet

I used to suffer from significant fatigue after meals until I started changing how I ate and what I ate. For me keeping the size of my meals small and more frequent and reducing the amount of carbs ( seems to be a big trigger ) consumed with each meal. I tend to have lower blood sugars and can have episodes of shakeness so I keep snacks with me wherever I go. I also started wearing an abdominal binder which has helped immensely with what I am sure is postprandial pooling. After meals my upper abdominal area would get painfully distended, I would get very short of breath, tachycardic, nauseated etc. Its amazing how much wearing an abdominal binder can help with postprandial pooling as well as general abdominal pooling if that is a problem you share. I should think also that delayed gastric emptying would contribute to postprandial pooling as there would be a greater blood flow draw. Another help would be to keep a diary of foods eaten so you can keep track of what may trigger problems for you. Janet