gjensen Posted December 5, 2013 Report Share Posted December 5, 2013 I so not have a treatment plan established. What seams to my most limiting problem, is a lack of blood flow to the brain. I can tolerate my HR etc. when it is not excessively bad. I cannot tolerate being up right for lengths of time because of my head symptoms. If I push it and go to long, I pay for it for days. I also get a lot of symptoms as a result of it. What can I do to improve the blood flow to my brain when I am upright? Quote Link to comment Share on other sites More sharing options...
Katybug Posted December 5, 2013 Report Share Posted December 5, 2013 Compression wear might be a place to start. Quote Link to comment Share on other sites More sharing options...
davecom Posted December 5, 2013 Report Share Posted December 5, 2013 The goal of all the typical recommendations - exercise, salt, fluids will improve blood flow the brain by volume expansion and improved heart contraction strength. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted December 5, 2013 Report Share Posted December 5, 2013 That's where I am at... Salt/ fluids/ compression/exercise... No meds at moment. Forrest gump approach. When I'm tired I rest, when I feel good I go out( with help of hubby) when I need help I ask for it. Day to day minute to minute sometimes Quote Link to comment Share on other sites More sharing options...
Lethargic Smiles Posted December 5, 2013 Report Share Posted December 5, 2013 Biofeedback aimed at improving circulation, specifically focusing on increasing peripheral skin temperatures, has helped me in addition to the previous recommendations. You can get a biofeedback hand thermometer cheaply on Amazon. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted December 5, 2013 Report Share Posted December 5, 2013 Jackie.. I'd be interested to get info on biofeedback. Seems that might help with my raynauds too Quote Link to comment Share on other sites More sharing options...
gjensen Posted December 6, 2013 Author Report Share Posted December 6, 2013 I appreciate all of the responses. This site has been helpful to me. I have not seen a sub specialist so it has been especially helpful. Just understanding what is happening helps. Was looking at my legs this morning while standing. I can see me veins getting a lot bigger than they used to. The first time I really looked and noticed. Is this pooling? Quote Link to comment Share on other sites More sharing options...
KareBear Posted December 6, 2013 Report Share Posted December 6, 2013 Have you tried the abdominal binder yet? I still plan on trying one soon as well. I know having O2 at home has helped me a lot but doesn't seem to be used by many others on here. My insurance never even questioned it when my doc prescribed it years ago so there was no problem getting it. Anything non-pharmaceutical that helps is always worth a shot Quote Link to comment Share on other sites More sharing options...
KareBear Posted December 6, 2013 Report Share Posted December 6, 2013 When you are standing and see your leg veins looking like that and/or also your legs may turn red or purple for some. That usually is from blood pooling. Yep! Especially if you never noticed this before having POTS symptoms. Before my symptoms got bad My legs never used to change colors but now when I stand my lower legs turn red, feel heavy, and many times start to swell around the feet and ankles. Also the veins appear very prominent like you mentioned. Quote Link to comment Share on other sites More sharing options...
Angel1234 Posted January 1, 2014 Report Share Posted January 1, 2014 What does a biofeedback hand thermometer do? Quote Link to comment Share on other sites More sharing options...
Lethargic Smiles Posted January 3, 2014 Report Share Posted January 3, 2014 What does a biofeedback hand thermometer do?It is not true for everyone, but for most people, hands and feet tend to be colder when circulation is out of whack. You attach the hand thermometer to your finger or toe and practice diaphragmatic breathing. This relaxes the body through allowing it to be more in parasympathetic mode than sympathetic mode most dysautonomiacs tend to be stuck in. As you relax, circulation improves, more blood gets to extremities such as hands and feet, and, as a result, the temperature will go up. The visual aid of the thermometer serves as reinforcement that you are indeed accomplishing something.The idea is, eventually, you'll be able to improve circulation with breathing techniques anywhere and without the aid of a thermometer. After 5 months of twice daily practice, I find I have more control over my circulation in most situations, but there are some situations where my body is too out of whack for diaphragmatic breathing to be helpful. That said, it is helpful a large percentage of the time.When I first started practicing it, after an hour or so of training in the office, my nose/face felt tingly and numb. I asked what was going on and the doctor explained my body is probably not used to blood getting around properly. This effect went away within a few days. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 3, 2014 Report Share Posted January 3, 2014 Alpha 1 agonists and volume expansion via florinef. Most pots appear to have faulty alpha 1 or sympathetically mediated vasoconstriction causing reduced stroke volume and impaired cerebral perfusion.biofeedback techniques would be about as likely to assist that as they would in treating multiple sclerosis or hypertension.. Quote Link to comment Share on other sites More sharing options...
gjensen Posted January 3, 2014 Author Report Share Posted January 3, 2014 Rama, I am having a bit of a quandary with that. I do want to try a mild vasoconstrictor. My concern has been that I tend to have high blood pressure when I am standing or trying to do anything. Slightly low otherwise. I have not been tested, but I am doubting that my presentation is hyper. My blood pressure drops on a TTT. I think the HBP is part of the effort to get the blood up. The high blood pressure comes in short lived spells. I am trying to rationalize the irrational, but I have become convinced that if I can improve this one point that my situation would be manageable. The tachycardia is a burden but not disabling on it's own. The head symptoms that I have is disabling. I cannot do much when I am most symptomatic and driving is out of the question. I have a laundry list of symptoms that I believe originates in one problem. Convincing a doctor is another matter. My neurologist thinks that I am having migraines and has subscribed Neurontin. Regardless of what the truth is, something is going on upstairs. Quote Link to comment Share on other sites More sharing options...
Lethargic Smiles Posted January 3, 2014 Report Share Posted January 3, 2014 Biofeedback definitely isn't a treatment (for most), it's more of a lifestyle modification tool that can make life a little less miserable and give the patient back a bit of control. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 10, 2014 Report Share Posted January 10, 2014 Short term fluctuations increasing blood pressure are not generally regarded as of medical significance. Low blood pressure spells are probably more dangerous. Sustain hypertension is another matter. Quote Link to comment Share on other sites More sharing options...
yogini Posted January 10, 2014 Report Share Posted January 10, 2014 gjensen, POTS/dysautonomia results in lower blood flow to the brain and the main objective of virtually every POTS treatment is to increase blood flow to the brain. I am not sure I understand your high/lpw blood pressure issue. Do you sometimes have high BP when standing and other times low? Or is it high for a few minutes then becomes low and stays low? If you have tachycardia and high BP, you could discuss a beta blocker with your dr. Quote Link to comment Share on other sites More sharing options...
gjensen Posted January 10, 2014 Author Report Share Posted January 10, 2014 Yogini, I did not explain that very well. Supine, my blood pressure is normal. 110/70. Standing, I initially have a drop. Then I often see a rise in BP and fluctuation. The quandary I mentioned was related to a vasoconstrictor. I suspect that I would benefit but sense I do not have low blood pressure, my concern was that I would give myself high blood pressure. What I suspect would help me the most is florinef and a mild vasoconstrictor. Beta Blockers (or at least the one I tried) dropped my blood pressure too low even on very small doses. It also gave me a lot of trouble breathing. This beta Blocker was Bystolic. Mestinon sends me for a ride. It is awful for me. It definitely over stimulates me, and gives me especially high blood pressure, and reliably makes my standing blood pressure even higher. As high has 180/120. It gives me the shakes and trouble breathing. My stomach, intestines, and esophagus spasms excessively. The feeling it gives is most uncomfortable. I tolerate clonidine well. It is no HR fix for me, but it seams to keep things settled and I do not have any of my "spells" on it. I find that if I split the dose throughout the day, I get a more reliable benefit. Right now I could not care less about he HR and Blood Pressure. For me it is tolerable. What is not tolerable and is debilitating is my head symptoms. At my worst (which seams more often than not), getting up for any length of time puts me down for a very long time. I do not faint, well I have, but that is not a concern. It is the head pain, numb cheeks, inability to think, dizziness etc. that can last for days. I get some relief laying down, but obviously I cannot stay in this bed forever. My largest challenge is getting a doctor on the same page with me. Is there any mild vasoconstrictors that are safe, over the counter, and not a stimulant? I seam sensitive to stimulants right now. I would go back on the licorice and see if the combination of the two with clonidine and compression garments would be helpful. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 11, 2014 Report Share Posted January 11, 2014 If they could work this out we would be in for much more effective treatments Quote Link to comment Share on other sites More sharing options...
yogini Posted January 12, 2014 Report Share Posted January 12, 2014 If your BP and/or HR aren't normal, that is likely linked to (or causing) the feeling in your head. Getting them in line may make you feel a lot better.The mechanisms are so complicated and it's hard to know what meds will work until you actually try them. With beta blockers, sometimes you have to try a few different ones before you find one that works. You can also take a beta with a BP boosting drug like midodrine or florinef (or just wear strong compression hose) if the beta is lowering your BP too much. An SSRI (Paxil) helped me keep up my BP. Not saying that any of these are the right options for you; your doctor can help you think it through best. Quote Link to comment Share on other sites More sharing options...
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