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Nausea is a common symptom of dysautonomia. For me it was Zofran, frequent small snacks rather than meals and gingerale instead of water - this helps me still when I get the waves of nausea.

@Eraena - your BP that you posted seems pretty stable. Some people ( including myself ) just have a naturally low BP and function well on it. Before having hyperPOTS my BP was always 90/50-ish and I felt great. I mind any increase in BP, since my POTS is controlled my BP runs low ( even as low as 80/48 )and I have no symptoms. Do you get dizzy when you stand up? Does your HR go up upon standing? If you have POTS your HR will go up without a drop in BP, regardless of wether it is high orlow.

Hi - I have had Raynauds all of my life, when I was a teenager I had actual "frostbite" on my toes from it. I also have hyperadrenergic POTS, which runs in my family. I think it is all related to sympathetic overcompensation.

Hello @SweDys - I am glad you had the test done and "survived" in one piece. I think the TTT is one of the most sadistic medical test EVER!!!! -- Yes, it is true - for the diagnosis of POTS your HR raises without a drop in BP. But that does not mean you do not have OI ( which is a symptom of dysautonomia ). What are your symptoms with standing and did you have any symptoms during the TTT?

Hi @Derek1987 - whenever they order an MRI of the brain they are investigating the structure of the brain, to find out if there are any anatomical anomalies or tumors etc that could cause your symptoms. I had 2 of them over the years and thank god they were normal. But they have to rule out anything that could contribute your symptoms. If it is normal that does not mean that there is nothing wrong with you but rather that they can rule out brain issues.

@JoshMW - I get the runny nose with eating and when I first get up. My doc told me that this is due to the sympathetic NS kicking in.

I get these shakes as well and usually I also get cold hands/feet/nose with them. Sometimes they lead to syncope or seizures but if I lie down as soon as they happen they can improve by themselves. In my case they are caused by excessive sympathetic overcompensation, in other words a sudden burst of adrenaline.

Hi @dancer65 - I am so sorry but I understand because I have been there. Just keep moving, it will get better. Once you can move again your body will get back to previous - but you have to be patient. I know, I know - it is sooo frustrating, one step forward and 3 steps back --- but you WILL get back to where you were. Best wishes - keep your spirit up!!!

This is a questions for the female posters: I have hyperadrenergic POTS which caused Interstitial Cystitis ( chronic bladder inflammation ). This has been getting worse with symptoms of overactive bladder. I have tried all meds and diet changes recommended for this but the symptoms are worsening. I saw my PCP yesterday and asked about meds for this condition, which are Detrol or Ditropan. He said he would prescribe them for me but he wasn't sure if they would affect my POTS since they apparently work on the nervous system. So here is my question: do any of you take these meds and have you experienced any negative effects with your POTS symptoms from them? I am hesitant to try if there is a chance they cause any POTS symptoms to reappear or worsen. Thank you in advance for any replies.

@Derek1987 - you mentioned several times that this condition has no cure. That is correct - you will have it for life. But there are so many drugs that provide relief of symptoms that you can live with the disease. I have had POTS for 9 years and am in the care of a very competent autonomic specialist. He tried several meds on me, including pyridostigmine ( which you also take ). It did not help for me. I also have NCS which causes syncope. I have passed out or fallen down and had episodes as you describe too many times to count. I am today disabled on SSDI but no longer experience the syncope ( unless in a bad flare ). I take 12 meds every day, exercise, take rest periods and get IV fluids weekly. Today I can live a good life within my limitations. I think if you are not improving on one med than your specialist should try another one, that is what we did. It took 3 years of careful finetuning my "medication soup" until we came up with the right combo. Improvement takes time and is very frustrating - and you have to work hard at it. If you have questions about SSDI feel free to PM me. Best of luck - wishing you strength!

How is your BP now? Is it still high? Have you ever considered an autonomic specialist? There are several in the US, listed on the physician finder list on this site.

I pass out and take seizures from POTS but I have not ever experienced anything like you describe but I know of other members on this forum that have similar spells. This sounds like something you should bring to the attention of a neurologist. Have you seen one?

@lieze - I also am so sorry about your situation. Dysautonomia or not - you are in burn-out mode. I know it very well. Regarding your POTS: there is a very good video and also brochure for family of dysautonomia patients on the dysautonomia project web site, as well as on ndrf.org ( national dysautonomia research foundation ). You could give these to your family to read. And you have to stop driving and shopping, sorry to say. I was in your shoes and continued to work and push through my symptoms in the beginning of my illness and it made everything worse. It would make sense to talk to your physician about your situation and your symptoms, this is not something you can work through by yourself. And you need to take a time-out. Did you mention your husband has another house where he retreats to? YOU should be the one to retreat!!!! --- Regarding your insensitive family: your father sounds very needy and at this stage there will most likely be nothing you can do to change that. If he is going to date - good, let her take care of him. At his age and with symptoms of dementia setting in he will only get worse and you cannot talk sense with him, I know because I have older parents and in-laws as well. So - it may be in your best interest to step back as much as you can, he will use all of your energy that you should spend on your kids. They are your first priority. And they CAN help YOU - explain to them that you are at the moment not able to do everything you are expected to do and that if you don't get a break you will end up bedridden. You can use the above mentioned brochure and video to explain. Ask them what chores they would be willing and able to take over. And also - take someone with you for shopping trips. My husband does all of the shopping but if I do go I go in a wheel chair and he does the check out. Your older kids can go along - regardless if they complain. --- And the one thing I am most concerned about is your husband. I am not sure what type of relationship you have but it sounds like he also needs to be sat down and be explained what the consequences will be if you do not get some help. With him working out-of-town it is probably difficult for him to assist with the chores and shopping etc but there are many other things he can take off your shoulders. --- Again - please have a honest talk with your physician and let him review the meds you are taking. Also - have him check Vit D and Vit B12 levels. These are common deficiencies that cause POTS to worsen and contribute to fatigue, lack of energy and burn-out and can easily be supplemented. I wish you only the best - take care of YOURSELF!!! And put those kids to work - they may be a little spoiled? But if they know how bad you feel and realize what will happen when you cannot drive and have to spend all day in bed they might wake up - in the end they love you.

@blizzard2014 - I know that Medicaid is different from state to state but as far as I understand it you are entitled to a second opinion. You could call your insurance and explain your case and they would have to provide someone who is specialized to treat your condition. You do not have to stick with a doc that does not help you and it is their job to provide a physician in that field. Yes - what stayathome said is correct - an Electro Physiologist would be the first one I would see. There has to be one in your plan that they cover. Also - every insurance has a case management specialist - they are trained professionals who help with cases just as yours and help you find the care you need. Before yo pay more out-of-pocket call your insurance and ask for case management and explain your case. I bet they will be able to help you. Lots of luck and well wishes!!!!

Dear @blizzard2014 - you really need to be better controlled with your meds. You have mentioned before that you titrate your meds rather take one consistent dose. In POTS this is not always a good idea since we are seeking stability. I take my meds faithfully every day, no matter what, and only if I am in a flare or my BP runs high despite my meds and usual routine do we increase my beta blocker for a day or so. My BP runs low and high, so it would not be smart to keep changing the dosage. Your BP abd HR have been so fluctuating that it mostlikely would help to stay on one daily dose of lisinopril and clonidine ( these are your meds, right? ) and only increase one of them if you are having unusually high BP that does not come down with rest. What doea your doc say about your meds - does he want you to "play with them" or does he recommend a regular dosing schedule? -- I so hope you will feel better soon!

Hello @xRobin - I am sorry to hear that you are in a flare. I have similar symptoms as you when I am really bad and the fact that you are unable to exercise makes it that much harder to get back on your feet. It's very frustrating. One thing I wanted to point out is that I too get very bad pain when I am in a flare but mine is joint pain. The muscle pain you describe sounds like fibromyalgia, which is also a dysautonomia. Your doc can check you for this by trying trigger points. Also - when I was at my worst with fatigue and exercise intolerance my doc checked my Vit D, B12 and ferritin levels which were all extremely low. They all contribute to the symptoms you have and are relatively easy to fix. Especially the Vit D causes the muscle pain and fatigue. My friend suffers from severe fibromyalgia and when she gets bad her Vit D levels are aways low. After a boost ( 50,000 units weekly for 6 weeks then 2000 units daily ) she feels much. much better and it is the same with me. Please make an appointment and have your doc check these levels - I would not be surprised if that is the culprit!!!! Best wishes - and please let us know how you are doing!!!!!

Hello @Outaker - in dysautonomia the tachycardia has to be sustained after standing, it is considered normal to have a sudden, short jump in HR upon standing. But I would be concerned about any fluttering sensations as you describe. I would ask your doc for a halter monitor that can monitor your every beat over many weeks. You can push a button to alert the company if you have ant syptoms but any abnormal rhythm gets recorded regardless. This will show if any of your bouts of fast HR or palpitations are from an arrhythmia. This will help getting to the bottom of these spells. --- Yes, beta blockers are a first line treatment in POTS and many tachycardias. If the lower dose does not prevent these HR spikes you might want to increase to the dose your cardiologist ordered. Be well - keep us posted!!!

@Megannnnn - I have hyperadrenergic POTS and suffer from both syncope and seizures. But my seizures are not pseudo-seizures, they are a result of extreme vasoconstriction which in turn causes cerebral hypoperfusion, in other words no circulation in the brain. I hope your seizures are not related to dysautonomia.

@blizzard2014 - I am already getting IV's at home through a port.

@bombsh3ll - I also can walk better than stand, so that is why I could do the upright portion of the catecholamine testing.

With dysautonomia the HR usually stays up with standing. When I could not control my tachycardia in the past we increased and then switched my beta blocker, which eventually fixed the tachycardia and palpitations/PVC's. Would a different beta blocker help?

I wish more of us would report these quacks @WinterSown. I have at least 2 docs that have been not only rude and dismissive but have actually done damage to me by ways of neglect. I just complain to my patient and awesome PCP who shares my frustrations and has already seen me in tears in his office several times over these docs' approach to POTS. The last one was a hospitalist that REFUSED to admit me for IV fluids despite my PCP asking him to admit me, which resulted in an unnecessary ER visit that then lead to the admission anyway. The other one was an electro-physiologist that did my second TTT ( which proved positive for POTS ) but told me that I am hysterical, that I should go off of all of my meds because I do not need them and that if I would stop taking my BP so often I would feel a lot better. Can you imagine? Of course I fired these - and 3 more - docs. Now I am in good hands with my team of 3 docs who work together and got me back on my feet. ( Mine are not powdered, though ). I did report these docs to the facilites they worked for, so I guess there were some repercussions for them. ---- Glad you are doing a bit better again.

@Megannnnn - welcome to the forum, but I am sorry that you feel that bad. Do you have tachycardia with your symptoms? Before your cardiologist appointment check your HR lying down, after 1 minute of sitting and again after 1 AND 5 minutes of standing. If you have a BP monitor check that as well. If your HR goes up at least 30 BPM or goes above 120 BPM within 5 minutes of standing AND STAYS there it could be POTS. I would ask your PCP to check orthostatic Vital signs - or have your aunt that is a nurse do it for you. This is helpful for your doctor to know. Good luck!!!!!!! Be well.

@Billie Gene - I am not so sure that your scenario is due to sensory overload, which means the normal senses ( hearing, vision, taste, feeling etc ) stimulates your nervous system too much, to where you develop unwanted physical symptoms from it. What you are describing seems to be more of a "sixth sense" sensation, which is not really called an overload.

@Faustus - google IV saline therapy for POTS. There are several articles about it that you can share with your cardiologist recommending this treatment for refractory POTS. also check on Dysautonomia information network , they have an exceelent article by Dr Blair Grubb. I always share articles with my docs - I have the time to research, they do not. that has helped me with getting several treatments.