Pistol

I have found this helpful: when our body gives up we get going: we are not reduced to the mere functions of our bodies. We do not have to have a great audience to change the world - being our best is always good enough. We do not have to be authors or motivational speakers or artists to make a difference. If we can manage to inspire or do our chores or just simply be there for anyone, not become the center of our own universe but know that we still - how ever little - are useful/helpful/of service to others ( even if it is just our own family ) - then we are doing good. If we are lucky enough to be able to do more - yippiehhh! Telling our story is always a good starting point.

One comment about Vanderbilt: when I first started with POTS symptoms I went to Vandy twice ( 9 hour drive one way ). They did a neuro exam and autonomic testing and then said I was fine, that my ANS was normal b/c the autonomic testing was normal. Another year of suffering later I went to my current specialist and was immediately diagnosed with hyperPOTS (confirmed by blood tests). So - when you go don't let them tell you what you have solely based on autonomic testing - demand they do TTT and other tests. Apparently the autonomic tests are not accurate unless you are symptomatic at that time.

@bombsh3ll - I am glad you are finally getting to see someone experienced in dysautonomia. After dealing with cardiologists that more or less dismissed the existence of POTS as a valid diagnosis for 2 years before finally seeing an experienced specialist I completely relate to the relief you will find once you talk to someone who has seen many others in your situation. I used to think I was a rarity because there was just no one else to relate to. But once I met my current specialist I realized that - although we each have our own symptoms - there are many others out there and what I experience is what many others go through as well. That in itself - as well as being heard by a doc who has heard it all before - gave me great comfort. I hope the same will be the case for you as well. Best of luck!

Currently it is 30 BPM or above 120 BPM within/for 10 minutes of standing. If you do that in a TTT they consider that POTS. If you don't then you may be told something else is going on but some cardiologists will tell you you may have dysautonomia.

So - I got my port 2 weeks ago and am good to go. Home Health is arranged, my supplies and fluids are coming in the mail today and then next week I will get a bag over 5 hours once a week and more if I am in a flare. I am so happy and excited. I was in the hospital over night for fluids again last week and I am so relieved that I may never have to go back now! I already feel so much less anxiety because I will be able to get fluids as soon as I need them - what a reiief!!!!! I have been needing 24 hour fluids every 6 to 8 weeks for the past several years. I am curious if I will have to go to the hospital at all now. I will update on that in 3 months time!!!!!

Oh please ---- fedex me a slice!!!!!

@Caty - don't be afraid to take the metoprolol. It can be of great help! If it makes you fatigued ( a common but usually temporary side effect) - I know several people who take it at night for that reason and it helps. I am familiar with being too scared to start a drug but if we don't try then we can not get better!

I know the feeling of the heart beating very strong but not necessariiy fast. I was told this can be from dehydration, low BP or high BP. Is it accompanied by chest pain? I also get this at night frequently but I got so used to it it does not scare me any longer. I just get up, get a drink and go back to bed. Often it fades after that.

@WinterSown- I am not sure what your symptoms are when you are in a flare but I know that often when I become extremely symptomatic it is often days - or even weeks - before the reason for the flare reveals itself. For example: recently I had a flare that landed me in the hospital and only a few days after my discharge did I develop a GI illness. Also - sometimes I become very ill with POTS symptoms and I realize later that in that period there was a low pressure weather pattern. Also - stress causes it, even when I am not aware that I am stressed. Sometimes I find out that a family member gets sick and I might have been fighting that illness. It is usually that the dysautonomia shows itself BEFORE I find out that something is wrong. My docs know to check me from head-to-toe when I become symptomatic (and it sounds like so do yours - we are the exception!!!) Sorry that you are not feeling well after such a long good spell.

I have found that some days I may make it down my driveway (200 feet) and other days I feel like I can go double that, However - when I go further than often I cannot make it back without having to sit down on my heels half way back. So - I try to go what I can every day and then do extra upright exercises around the house so that when I give out I can retreat easily. If I go further than my tolerance allows than I have to pay for it with inactivity for a few days. And in response to that I will have to start all over again …. down the drive way it is ! But mostly I have found that you have to learn to be able to listen to your body - we fluctuate in our abilities and if we know what our bodies tell us then we will be able to judge what we can do that day. This works for me (mostly).

Before I was diagnosed (and properly medicated) I had terrible surges that often would end up in syncope or seizures. They tried many POTS meds and the tachy and syncope eventually lessened but the surges only improved after - in addition to all of the meds - I had to stop working and now am able to lie down and rest as soon as they start. This I could not do while working and that exacerbated them. I will still surge if I have to leave the house and be at events or in a store etc. So - sometimes there is no drug to stop them but we can be pro-active and responsive by lying down in a quiet place, deep-breathing and relaxing to "will" the ANS to calm down. Easier said then done though.

I take 0.5 mg of Ativan as needed for sleep but also when I get anxious or have a surge. It does not help with surges (I guess I would have to take a stronger dose) but does help with sleep. I have absolutely no side effects from it. But I don't think it is good to take it routinely because it looses it's effectiveness after a while and may cause dependence.

@CalicoCat - you said the device malfunctioned whenever your HR went up. It is possible that it could not read a BP when this happened because it was too low. Even BP monitors in hospitals say error message when the BP is too low to detect. That in turn would also cause your HR to go up.

Hi - I am wondering what you mean by your orthostatic BP are positive with position change. Does that mean your BP goes up or down? -- I have never heard of anyone recommending alcohol in any form for someone with gastric issues. I don't blame you for not doing that again!!! You say you have severe deconditioning- that will definitely cause higher than normal HR. I am surprised - and happy - to hear that you are working despite the deconditioning. But maybe you should take some time off to recondition - slow but measured and deliberate exercises to regain you orthostatic tolerance. Since you are already on metoprolol you must have a cardiologist - best to make him/her aware of your issues to see if med changes are in order. --- Dysautonomia in any form changes in symptoms and severity. We all are victims to certain triggers, and they come in all shapes and forms. I do best by trying to have routine in my daily activities as well as nutrition and sleep. This is not easily achieved but does more good than any meds (but I take my fair share of those as well). However - for many of us things get better as long as we live within our limits. --- I am not sure if this post is helpful but I hope you improve!

@Caty -has any doctor told you that you have dysautonomia? I am just wondering b/c - especially with you mentioning an elevated temperature - there may be other conditions or illnesses that could cause your symptoms as well. You mentioned a viral illness? Your symptoms have been present for a few weeks as you said in your post. Do not despair just yet - often we get better although it may take a while. Our bodies need a lot more to repair themselves than we give them credit for.

I am thinking that cabbage juice would turn us into a floating device - No? Does it not cause unbearable flatulence?

Hi @Caty - I am so sorry about all of your scary symptoms! I am not sure if I can be of help but here is what I think: I am sure you are seeing a GI specialist (?) so I would ask if there are any meds that help for esophageal spasms. Have you had your EGD yet? I know the feeling of feeling full and nauseated after a few bites of food and I was recently diagnosed with gastroparesis. I had a gastric emptying study which was normal but they claim I have it anyway because when we are fasting then the problems may not be as obvious. So - maybe this study might shed some light on those symptoms? --- The fast HR after eating is frequently seen in dysautonomia because the body sends all the blood to the stomach for digestion and that causes the heart to beat faster. Nausea is also common. I am not sure about the fast HR at night or the energy in the evening. But I am wondering if you are seeing a cardiologist? He/she might order a 24 hour holter monitor to see what is going on. This might also be helpful in coming up with a diagnosis. --- You mention weight loss - do you think you could tolerate Ensure or other liquid supplements to just keep you from loosing more weight? --- I hope your doctors will find out what is going on soon and you find some relief!!!!! Best wishes - get better!!!!

Vitamin C is water-soluble, so taking 1000 mg cannot hurt you. If it helped anyone than I am glad for them. I was always told to get the vitamin from food rather than from supplements.

I have hyprPOTS and am perimenopausal right now. I was told by my autonomic specialist that POTS symptoms can get worse during menopause. I myself have not really seen it getting worse - just changing in severity. The symptoms changed for me ( a lot more GI issues and anxiety related to syncopal episodes ). My BP has been running higher so I had to increase my meds. Plus - weight gain and more exercise intolerance. So - decrease salt intake for me.

I have been caught "on tape" both passing out and having seizures. Syncope is usually caused by a sudden drop in BP ( which has been recorded shortly after an event - 80/50 ). In my case I also have been recorded having high BP after - as well as shortly before - seizure like activity ( 150/90's ). When I get episodes of extreme orthostatic intolerance I usually fluctuate really fast. So - I do believe that in many cases the BP/HR taken AFTER the episode are not accurately showing what went on DURING the episode.

I have to agree with @bombsh3ll - although I myself have not tried the program I know people who have ( for reasons other than POTS ). I have no doubt that this program can help some but I have not seen any evidence of successful treatment in the people I know that I personally know that have tried it.

Hi @voxel - that I can share my experience on. When I first got sick I tried to continue working although I kept passing out at work. Then they gave me a desk job and I continued passing out. Often I was too ill to go to work so I used up a lot of FMLA. In the end my doc made me take off long stretches at a time and I used up all of my FMLA. It goes on a rolling calendar, so if you use 3 weeks in January you have to wait until next January to get them back. Once I exhausted all of my FMLA they even gave me 3 extra months of leave so I could keep my benefits. But as of May 2013 I had to quit work all together. I had long-term disability through my employer as well as short-term that I had selected. The short-term paid for the first 6 months and the long-term for everything after that. But they made me apply for SSDI ( because of course they don't want to pay me until I am 65!! ). They supplied a lawyer and all. After I got SSDI they still pay a small amount every month. - So - yes, thank god I had both short-term and long-term. But don't forget: long-term disability benefits usually do not go into effect until after 6month of missed work. Short-term disability insurance covers the immediate needs. Also - once you use up your FMLA you are no longer guaranteed that you will get you old job back. … Best of luck - I hope you will not need any disability benefits!!!!!

@dancer65, @StayAtHomeMom - I smoked for many years and tried to quit several times. When I had my daughter (13 years ago) I just ended up quitting cold turkey, although my husband continued to smoke. It was simply that she gave me a reason NOT TO WANT to smoke anymore. The need to quit was stronger than the need to smoke. And I never looked back - once the habit is broken it is done-and-over with. And I feel so much better since!

I just find it strange that now we have to "self-medicate". But if it works - we all operate differently. I am just thinking - since nicotine is a vasoconstrictor: would a patch not work better, since it would put an even amount in the blood stream? Rather than vaping or smoking, which gives little bursts of nicotine? ( I am serious! )

I am glad you are seeing an endocrinologist since you have elevated renin levels. It sounds that with your symptoms that is the first route I - personally - would also take. Be well!