Tammy

Having a thyroid condition before developing POTS, I can say that the symptoms for me have been different. But... now having both conditions, it does tend to influence symptoms for both diseases. It's like they can feed into each other and causes issues from one to the other. - Tammy

Everyone has different sensativities to a variety of foods in general, but dairy and gluten allergies are fairly common in Pots also. Preservatives like Monosodium Glutamate (sp?) or MSG can bring on symptoms also, so checking the foods your eating for that also may halp some and avoiding them. Usually with time, you might start noticing things that are specific triggers to your system. It helps to keep a food diary and noted when you feel unwell more so, and think back in the past hour if you've eaten something that may have increased your symptoms - write it down and then see if you notice a pattern. - Tammy

I agree that naps help so much. I don't tend to get them as I have a two year old daughter, but periodically I do and it does help as long as I don't wake up with an adrenaline surge after it. I can't see I really "do it" either though as I'm so exhausted and weak most all days off and on that I do tend to have to sit down a lot for many, many, many breaks thoughout the day. - Tammy

So true! I sometimes feel like a robot as all the simple pleasures in my life I have to control,like how much I laugh sometimes causes skipped beats/lightheaded, and cry - that's really asking for a adrenaline surge, can't get angry or I'll likely puke on the person I'm arguing with... and excitement from anything can about put me out for the count. Ah, the wonderful world of Pots!!!

Big Hug... Stress always makes things so much worse. So on top of dealing with feeling the struggles of daily life with a health condition, struggling to cope with loss just about breaks the camels back. Just take each day as it comes and each minute as it passes as best as you can and cry when you need to cry (if you can - I know crying makes me feel even sicker, but sometimes it's unpreventable). Take care of yourself. -Tammy

I'm always willing to try something new in hopes of helping myself feel somewhat better but also do some research on how it affects us, if possible first... In this months issue of Life Extension, I read about this supplement helping those with chronic fatique and fibromyalgia, and heart functions with dystolic function issues, etc. I thought maybe someone here had tried it AND was wondering if it helped them or not. It lists Co-Q10 and L-carnitine as the two other supplements in conjunctions with the D-ribose as the missing link in increasing energy output to help. Here's the link : http://www.lef.org/magazine/mag2007/may200...r_ribose_01.htm if that doesn't work you can try www.lifeextension.com, the article is on the front page. Let me know what you think about this and if it might be something to try But as I think about it, wondering if it might lower blood pressure, so maybe this isn't the magic pill !!!!! Thanks for any input/idea. ---Tammy

This was the first drug my cardio tried me on and it made me so exhausted, I couldn't even keep my eyes open on it. So for me, if I wanted to sleep through the entire day, it would of been the perfect drug, but obviously sleeping for 24-7 is not an option!

Okay, I'm really confused by the recent prescription my cardiologist gave me, as he is new to me and not sure if he fully understands what my body goes through. Here's why I'm a little baffled... Okay so when I do remotely anything my BP goes up, mostly my diastolic number will be around 95 and the systolic will be 119 or something like that, so not worried about the top number. My HR of course soars. So if I go start Florinef, won't this cause me BP to go up even more, and is that a good thing? When I'm resting it's usually 110/75 on average, it's with activity that it goes a little crazy- 123/106 just after walking two minutes earlier today. How is this florinef suppose to help? Thanks. Tammy

The only way I can tolerate prozac is in the liquid form so that the dose is very small. I take 2 ml of a 5ml/20mg solution, and it has taken me three months to get to the 2ml level. I literally had to start at 1/2 ml and had to take it right before bed at first. I do notice that my fatigue seems a little worse on it, so not sure if it's helping POTS but does seem to help with my PMS stuff. Hopefully your doctor is willing to prescribe you the liquid form so you can work you way up to a theraputic amount. - Tammy

I don't really have an idea about cost... or if insurance or medicare would pay for it. From the information my EP gave me, at least a study that was conducted on it for POTS patients, was from last year. So this could be a fairly new thing and is still in somewhat of a trial phase, not sure. I'll keep you all updated as to any improvement I see from using it, if it works. - Tammy

Said a little prayer for you so you get some relief from the nausea. Also, have you tried ginger to help? It doesn't act real fast but usually in about an hour, it does seem to help some with nausea. I usually get fresh ginger root and cut about a 1 inch slice off it and slice it into piece and boil in 2 cups water for 10 minutes. Then I sip on the "tea" slowly. Sending good vibes your way too - Tammy

I guess how my physician explained it's use to me, is to breath through it for 30-60 seconds a time, before sitting or standing up - or if I start to feel lightheaded or experience "graying out" vision. I tried it twice today - it's kind of like if you try to breathe inward with your lips shaped to whistle tightly, so that the amount of air being breathed in is somewhat restricted, but when you exhale, you just relax and exhale normally. - Tammy

I have no idea how my insurance coverage will be with this device, but guess I'll find out when the bill comes. The physician gave it to me during my visit, didn't have to go to a pharmacy for it, so not sure? - Tammy

Hello! Well I just got back from one of my normal follow-up visits with my EP and was hoping to address my adrenaline rush problems, but he seemed for focus on the fact that he feels my adrenaline rushes are being caused by a "drop" in bp/heart rate, which therefore, for me, causes the adrenaline rush with the sweating, high bp and tachycardia, etc. So he decided he'd like me to try an enhanced circulatory device and also florinef. He said that this device is being sucessfully used by patients with POTS/who faint with low blood pressure. Since I have more problems with adrenaline rushes rather than lightheadedness/faintness, I'm not sure how this is going to help, but I'm giving it a try. Has anyone here tried either florinef or the enhanced circulatory device? Just curious if they helped and in what way. Thanks. - Tammy Oh, here's the website for information on the circulatory device if you haven't heard of it http://www.advancedcirculatory.com

No luck with beta blocker here either... intolerance to them. I've tried diltiazem for 8 months and was more fatigued on it so ended up discontinuing due to fatigue level. I keep looking for a medicine that my body will tolerate for my heart rate and after 7 years, still haven't found something my body tolerates. Hopefully someday there will be something that works. - Tammy

Yes, I have had this happen too. I'm unable to tolerate any meds to help with my symptoms too, and sometimes, out of the blue, I'll have a good day.. it's just really strange. I had a day like that last October... it was a perfect day - no symptoms at all, and I have no idea why. It was only one day and since than haven't had one, but was very thankful for the moment of what it was like to be normal. Tammy

Hi! My regular physician would like to me also see a neurologist, even though most of my care is followed by a electrophysiologist. I'm wondering how a neurologist could be of help with POTS? Anyone with experience or information as to how this fits into this would be of help... Also, what type of tests may they perform in analyzing POTS symptoms? Thanks. Tammy

Dayna, Did the ER tell you what to do if you don't get any relief? Did they offer any other options if what they gave you didn't work? I just wish there'd be something that would help relieve your suffering, it's so hard and obviously it's to the point where you feel like you just can't tolerate it anymore... have you been able to sleep at all the past few days? I'll keep you in my prayers for some relief - Tammy

Hi! I was thinking this morning about when I was growing up my mom was sick alot but never really knew why but yet she had days where she functioned pretty well too. She didn't talk about it much but would just tell me that she wasn't feeling well and that she needed rest and would ask me to play quietly. As I got to be a teenager, she still had days that were hard but I remember them being more migraine headaches being the problem. I also recall over the years that she'd had to go in to the doctor after she'd "fall" off something or in the middle of something she'd just "blackout" and hurt herself in the process. Again, never really talked much about it and it didn't really phase me as this just was the way things were. Now, even though I was healthy growing up -- always needed more sleep and was easily fatiqued -- but not like what I deal with now -- could this be a form of an inherited disease even though for me it started after I over-exerted myself and than the second flare, which was and continues to be worst than the first 3 year spell, from very stressful events? Any information or knowlegde about this would be appreciated Thanks - Tammy

Hi Angela, Welcome to this wonderful support site! I'm so sorry you are experiencing all the awful symtpoms this illness entails. I have found that having this has completely changed my life and how I live it. I now need to live hour by hour rather than week by week. Plans to be out and about constantly fall through due to how weak or unwell I am. I had to quit my job because, like you, just getting off the couch takes all my effort. I rely on family and friends to get us through this as much as possible when they are available to do so and at times I have to much pride to ask for help and then pay for it big time with worsening of symptoms when I try to be too independent. The hardest part is being too weak to drive myself anywhere at this point. I think the positives that have come out of this is that if I do have even a small window of energy and can do a small task around the house, like loading the dishwasher, I focus on that I was able to do that, and consider it an accomplishment and am thankful for that. From now on, the best thing to do is focus on what you can do. Even though you can't control what your body is doing, you can control how you deal with what is happening to it. Find out what options are at the place you work as to sick leave options and maybe if your medications eventually adjust to your system, some folks on this site continue to work and do pretty well, really depends on your individual body. Also, find a support system to help with the kids and the house. Give your body time to rest and think positive as much as you can - stress only adds to it and elevates symptoms (hard to do, I know). Take care, Tammy

Only thing that comes to mind is having dry eyes, if that is one of your symptoms , but if you've already been given the go ahead for the surgery, probably not an issue. One of my friends that has FM just recently had it and it took a while for her eyes to 'clear' vision, so she just had to do extra drops thoughout the day to help things along.

http://www.medsitecme.com/(x23lev45ndjj51z...1//patient.aspx For those who are unable to pull up the link here's the information from the above link. Hope it's okay I copied it Depression & Chronic Disease: Understanding the Vital Link Background Approximately 20.9 million American adults, or 9.5% of the US population aged 18 years and older, have a mood disorder (major depressive disorder, dysthymic disorder, or bipolar disorder) (NIMH, 2006). Clinical depression is a chronic, serious, and costly mental illness, but it can be effectively treated with medication, psychotherapy, or a combination of both in more than 80% of people (NMHA, 2000). The risk of depression is higher in individuals with serious medical illnesses (eg, heart disease, stroke, cancer, diabetes, chronic pain); the more severe the condition, the more likely the patient will experience depression (NMHA, 2000; RWJF, 2004). Alone, depression can be incapacitating, but comorbid medical illness makes outcomes worse for both conditions. Comorbidity is associated with greater distress, role function impairments, poor self-care, less ability to follow lifestyle recommendations, and poor adherence to medical treatment recommendations (NMHA, 2000; RWJF, 2004; DiMatteo, 2000; Managing depression in primary care: achieving remission, 2006; Evans, 2003, 2005). Depression can occur in association with other diseases for a number of reasons (Goodwin, 2006; ICSI, 2006): Medical disorders may contribute biologically to depression (eg, thyroid disorder, stroke) (NMHA, 2000; Goodwin, 2006) Medically ill people may become clinically depressed as a psychological reaction to the prognosis, pain, and/or incapacity caused by the illness or its treatment, or difficulties coping with a medical condition (NMHA, 2000; Goodwin, 2006) Drug treatments for comorbid illness (eg, interferon, corticosteroids) can cause depression (Patten, 2000) Depression may contribute biologically to a comorbid medical disorder. It can cause or exacerbate somatic symptoms, and it may also affect behavior. Physicians should be aware of the increased incidence of depression in patient with such conditions as chronic pain, diabetes, cancer, and cardiovascular disease. Although depression is a treatable cause of pain, suffering, disability, and death, primary care physicians detect depression in only one third to one half of their patients with major depression (ICSI, 2006). Minority patients, in particular, are more likely to obtain mental health care from their primary care physician than from a mental health specialist (Snowden, 2002; DHHS, 2006). However, in primary care, minority patients are even less likely than white patients to be identified as depressed and, even when identified, their depression is less likely to be actively managed (Gallo, 2005; Kessler, 2005; Das, 2006; Borowsky, 2000; Yeung, 2005). The following two cases illustrate the important of screening for and treating depression in patients with comorbid conditions. Daniel is a 21-year-old white man in whom type 1 diabetes mellitus was first diagnosed at the age of 18. His pediatrician identified the disease from the smell of acetone on his breath due to ketosis and directed him to the emergency department (ED). Daniel was admitted to the intensive care unit for five days to stabilize his disease. He was angry and found it difficult to accept that he had diabetes, particularly that the diabetes would affect his ability to eat, drink alcohol, and ?party.? He also found it difficult to deal with his medication and testing regimens?in his words, ?I couldn?t have imagined anything harder to deal with.? Discussion: The prevalence of depression in patients with diabetes is approximately double that of patients without diabetes (RWJF, 2004; Managing depression in primary care: achieving remission, 2006; ICSI, 2006; Lin, 2004; Anderson, 2001). Depression in patients with diabetes is thought to result from interactions between biologic factors and psychosocial factors associated with the hardships imposed by a chronic illness (Lustman, 2005; Talbot, 2000). When depression accompanies diabetes, there is often evidence of poor glycemic control and more diabetic complications (eg, retinopathy, nephropathy, neuropathy, macrovascular changes, sexual dysfunction) (RWJF, 2004; ICSI, 2006; Lin, 2004; Katon, 2004a), and depression is strongly associated with mortality (minor depression: RR 1.67; major depression: RR 2.30) (Katon, 2005). In addition, depressed patients with diabetes have total healthcare expenditures 4.5 times higher than those without depression (RWJF, 2004). Routine screening for depression should be performed in patients with diabetes (Silverstein, 2005). However, depression is only recognized in approximately half of patients with diabetes and appropriately treated in less than 25% (Katon, 2004b). Daniel perceived that the diabetes dramatically reduced his quality of life and interfered with his relationship with his girlfriend. He acknowledged that he was not adhering to his diet and medication regimens, and that he was leading an unhealthy lifestyle, partly in an attempt to deny he had diabetes. At other times, he was angry or guilty, believing he was responsible for the diabetes. He fell into a cycle of not sleeping, being unproductive, and feeling hopeless, together with guilt that he was not able to break this cycle. At the request of his family, Daniel reluctantly sought psychiatric help, but he had self-imposed barriers to accepting such care, such as denial, embarrassment, and the feeling that depression was a weakness. He disagreed with the psychiatrist?s determination that he seemed suicidal: ?Maybe I?m just a little sad about being diabetic.? Antidepressants were prescribed, but he was resistant to taking them, particularly because they would not be immediately effective, and he was overwhelmed by the addition of another agent to his medication regimen. As a result, Daniel was nonadherent, only taking the antidepressants every third day for a week. Discussion: For a patient such as Daniel?who is rebellious, resistant to antidepressants, and at risk for adherence problems related to multiple medications?cognitive behavioral therapy (CBT) would be a more appropriate initial treatment that would not add to the complexity of his diabetic care regimen. Cognitive behavioral therapy has been shown to be effective in patients with depression, including adolescents (Melvin, 2006; Lustman, 1998).It also has the advantage of specifically targeting perceptions and behaviors that are likely to improve diabetes-related self-care in addition to depression (Piette, 2004). However, in one study of patients with diabetes, only 7% of those with comorbid depression received four or more psychotherapy sessions during a 12-month period (Katon, 2004b). Once the patient is stabilized on CBT, it may be appropriate to discuss adding antidepressants to CBT, explaining that a combination of both may be more effective than either treatment alone (Pampallona, 2004). All patients?but particularly an angry, resistant, and depressed young patient such as Daniel?would benefit from continuity of care, coordination of care and communication among providers, and proactive patient monitoring (Piette, 2004). This would help to identify problems, provide problem-solving counseling, ensure engagement in treatment, and provide effective education to explain how the interaction between depression and diabetes might result in adverse outcomes (Gask, 2006). Primary care physicians are well positioned to provide integrated care for depression and diabetes, but they face many barriers (Williams, 2004). Organizational barriers to high-quality care include brief visits and competing clinical priorities. The psychological problems of a patient such as Daniel may seem overwhelming to deal with during a short encounter; however, the physician should still intervene, which may require scheduling the patient to return for a longer visit. Several evidence-based programs designed to improve depression treatment in primary care may help efforts to incorporate depression management into disease management programs for chronic disease (RWJF, 2004). These include the Robert Wood Johnson Foundation?s Depression in Primary Care Project (www.wpic.pitt.edu/dppc/), the IMPACT program developed by the John A. Hartford Foundation, the California Health Care Foundation, the RWJ Foundation, the Hogg Foundation (www.impact.ucla.edu), and the RESPECT model developed by the MacArthur Foundation (www.depression-primarycare.org). Physicians can further support patient self-management by making changes in practice systems. Given the large number of primary care patients with more than a single chronic condition and the potential advantages of coordinating care across multiple conditions, primary care practices could increase efficiency by developing extended care management interventions for several chronic conditions in which the same generic patient barriers impede optimal outcomes (Nutting, 2002). Group visits could be scheduled for interested patients with comparable chronic illnesses so that they can discuss self-managing their illnesses with others who are in similar situations (Coleman, 2005; Masley, 2000). This also allows physicians to deliver extensive education and self-management instruction while possibly increasing financial productivity (Jaber, 2006). Group visits in adults with chronic diseases have been shown to reduce ED visits, hospitalizations, and primary care visits ... Summary Depression is a common, serious, and costly comorbidity with chronic disease. As these two cases illustrate, lack of recognition and appropriate timely treatment of depression can adversely affect and/or prolong comorbid medical disease. The US Preventive Services Task Force found that asking the patient two simple questions about the presence of depressed mood and anhedonia (?Over the past two weeks, have you felt down, depressed, or hopeless? and ?Over the past two weeks, have you felt little interest or pleasure in doing things??) appears to perform as well as longer instruments for detecting depression (Pignone, 2002). These two questions can be effective in opening up dialogue and beginning treatment of comorbid depression, which may involve pharmacotherapy, psychotherapy, or a combination of both.

Okay, you had a heart attack. Did they think your POTs caused it? You mentioned they just told you to treat your POTs symptoms, so do they think that will prevent another one? Heart attacks are serious and can have other long term effects so wondering why they just addressed the POTs? - Tammy

Wow, this is obviously a very common thing we have all gone through. I wish that none of us had to deal with these, but am very thankful to not be alone in it, and hope that someday a cure will exist for all these awful struggles we go through. - Tammy

Yup, I was thinking of the "HOUSE" show also as I was reading your post. If there was just a doctor out there like him that could help us, we'd all have a happy ending to our sufferings of this illness! Only problem, my husband says that with as sensative as I am physically to any testing, etc. and it seems that House has a kill or cure method in his process of diagnosis, my husband would be afraid of the possible "kill" factor Wish I had some advice, but my physicians are also baffled by a lot of things my body goes through and have been told to find ways to cope with them which is such a joke. How can you cope with feeling like your not going to see the light of another day! And then you manage to fall asleep and a few hours later are shocked to wake up and relive this nightmare once again. - Tammy