MomtoGiuliana

Steph and tearose--thanks for your responses! It gives me some confidence--I just need a little reassurance even though I KNOW it will all be fine. Tearose--and others--I should have emphasized in my response to this today that the orginal post by calypso was July 9, 2004! I just am feeling jittery about the altitude issue and remembered this old post! Thanks all Katherine

Just another question on this-- I am thinking about travelling to Colorado this summer to visit an old friend and her children with my daughter. The elevation is about 7,000 feet. I am a little nervous about it--even tho I have managed much higher altitudes prior to diagnosis. Calypso--how high were you on this trip you mentioned? Anyone else have any experiences on specific elevations to share? Also, I just wonder if it will be hard on my 2 and half year old and if I should be concerned about that--but I know that it OT. Thanks, Katherine

calypso I have had flare-ups of unepxlained aching--and yes, that feeling like my bones might be breaking. It has gotten better over time. It peaked in intensity in my mid-20's. No diagnosis (of course). It was sometimes accompanied by a headache. Ibuprofen helped a great deal, but I do remember feeling really rotten while in one of these flare-ups. My first flare-up started in Africa, and when I finally got to a doctor after 2 weeks of it, he just said it was a virus--he went further to speculate that it was contracted due to close contact with livestock. Anyway, it continued off and on for years. During this time I also had POTS symptoms, but didn't know that was what was going on. To this day, I don't know what the heck this was--the last flare up I got was about 3 years ago. I do wonder if it is just another facet of POTS. I hope you can get some relief. Katherine

Hi Merrill Sorry for your difficulities. I don't know much about IBS, except like calypso said, it is a diagnosis after all else is ruled out. For what it's worth--we have 2 intestinal viruses getting passed around in my area this past month. This is definitely a bit unusual. My daughter has had two of them in the past month, along with all the others kids at day care and my husband and me as well. Neither one involved a fever. Also, just thought I'd mention, in Peace Corps training which included general medical self-care training (very helpful when the closest doctor is several hundred miles away), it was stressed that OTC remedies like immodium should not be used for diarrhea--if you have a virus or bacterial infection, you have diarrhea for a reason--the body is trying to rid itself of the infection. Best to let that happen naturally and replace electrolytes with rehydration salts and take clear fluids and plain foods until things settle down. Hopefully things will settle down for you very soon! If not, then hopefully you can get a prompt diagnosis! Take care, Katherine

GREAT idea. Katherine

So sorry you have strep! Hope it clears fast and you are feeling well soon. SSRI's can increase appetite. I don't think they affect metabolism, though. Take care, Katherine

Welcome to the forum, although sorry you are having these problems. How unbelievably frustrating. Sadly too many of us have the same story of a long hard road to diagnoses and proper treatment. In your case in particular, fainting on the job could be very dangerous! Have you been evaluated by a POTS specialist recently (since your university test)? It sounds like that is in order. There is a list of physicians on this webpage. If none of them are nearby, I would recommend trying to see a local electrophysiologist, if you haven't already. Keep track of your bp and pulse standing and sitting at home and take those records to the specialist, along with the other findings, as well as your history of medicines. My electrophysiologist found my home readings of bp and hr helpful in evaluating my case and my medications when I was very sick with POTS. There are many different treatments available--hopefully something will help you. You can also try to increase your salt and fluid levels, in the meantime. Take care, Katherine

tearose That's great that some exercise seems to be helping you! I found the same thing. Started out slowly--with floor exercises, and eventually got back to brisk walking and more vigorous yoga. I have to admit that I don't do it everyday due to being back at work 3-4 days a week (on those days I try to make up for it by using the stairs at work, since I work on the 3rd floor). For moms of young children out there--there are some nice yoga for kids videos available. My daughter and I enjoy doing these exercises together. I think you're allowed a few cookies! Congratulations and hope you are able to keep it up and keep getting stronger! Katherine

Hi tearose Yes, I guess I did wonder about the possibility of referred pain. Apparently appedicitis was ruled out when she had these exact symptoms two years ago. When she was a child her symptoms were different, from what I remember--pain in the middle of her stomach and not much if any nausea. Like this, the problem came and went--most of the time she felt fine--she was evaluated as a child and they thought she could be lactose intolerant so for awhile she was off dairy. Eventually she started back on dairy and GI symptoms didn't return until 2-3 years ago (she's 31 now). BTW, 2 years ago her doctor's first thought was that she might be pregnant. Her nausea was and is so bad that she can barely eat. It's such a puzzle--I just have a feeling that it is related to autonomic problems or autoimmune problem in some way, since I have both and another sister also has POTS. Thanks so much for your concern and your thoughts on this! Katherine

Thanks so so much, all of you. I have looked at most of the sites you recommended. Thanks Gena for reminding me about celiac. I don't think my sister has been tested for that and that would be easy to do. I really feel for her b/c she is so unwell again and facing the usual uphill battle with skeptical doctors that most all of us have also faced. She is also under some stress right now b/c the job she has now ends in September and she is looking for another job. I can't help but wonder if there is a connection there to some degree. What seems to rule out gallbladder problems is that her pain is on the left side. Is it possible (anyone out there with gallbladder experience) to have mostly left-sided pain with that?! Thanks again and any other thoughts/ideas are certainly appreciated! Katherine

Persephone Not all POTS patients have low blood pressure on standing. When my POTS was at its worst, I had high bp that went even higher when I stood, along with the fast heartrate. It is not harmful in the short-run, but if your high blood pressure continues, it should be controlled in some way. Ironically, increasing salt and fluid helped REDUCE my bp. It's very confusing. Hope you start feeling better soon. Katherine

If anyone can give me any suggestions, I would be most grateful! To preface, I think autonomic problems do run in my family. Two of us have been diagnosed w/ POTS. Another of my sisters has been having GI issues off and on in recent years--but also as a child--with no diagnosis. She had a thorough work up 2 years ago by a specialist and they found no problem. This week the symptoms are starting up again. Her main symptoms are nausea and pain in her left side. She can barely eat without having a great deal of discomfort. She is of course discouraged with her doctors, and doesn't want to go to the trouble to go back to them with the same complaints, as they gave her a clean bill of health the last time these symptoms occured. My main question is--can anyone recommend good sources, on-line or otherwise for her to learn more about GI conditions--particularly anything that might be caused by autonomic dysfunction? Also, if you have any other thoughts on this--I would really appreciate it! I don't really know how to advise her at this point, beyond recommending that she go back to her doctor. Katherine

Ling--so sorry that your adjustment to medication changes is so challenging. Can you talk to your doctor about this? Hope you feel better soon. Katherine

Hi Rubberarm Welcome. Regarding your exercising heart rate, you may want to look at this recent discussion on this topic. To reassure you, the heartrate you describe is not dangerous for an otherwise healthy heart. http://dinet.ipbhost.com/index.php?act=ST&f=1&t=1828 Kudos to you for exercising when you can--it will help you improve in the long run. Chest pain--this is a typical POTS symptom. When you were diagnosed with POTS did you have a pretty good cardiac work up? Holter monitor, event monitor, echo, EKG? If all these came back normal, then you are very likely fine. If it continues, you should check with your doctor--you're right that there are a variety of causes for chest pain. Keep up with your fluids and salt--that could help to keep your heartrate down during exercise/in general. Many POTS patients find low dose beta blockers helpful. Again, welcome to the forum. Feel free to ask any questions you need to! Katherine

Denise--I am sorry that you also lost your grandmother to Alzheimer's. Good point Denise. It's not helpful to dwell on what we can't change, better to just try our best to live as well as we can. It is helpful though to be aware of risk factors, so that we can control the areas of our lives that are possible to control, e.g., diet and exercise. Katherine

corina Yes it does scare me! I don't like to focus on sad (and scary) things, especially when forum members have enough of their own problems to contend with. However, this is her story. My grandmother's disease was particularly slow progressing and it was so horrible to see her slowly fade. Also she needed a lot of care for years, while she was alive physically, but virtually gone otherwise. (In a way, that is my biggest fear.) My grandmother had cognitive issues throughout adulthood, according to my mom. Much more significant than what I have had, so far. She always had significant trouble focusing, with memory and with organization. My mother learned at an early age how to do housework b/c my grandmother didn't do much of it, for example. Her physical symptoms were otherwise very similar to mine--she had generally low energy (although always loved swimming and walking--she was not inactive), she fainted (I don't, as an adult) and felt faint a lot, she had preeclampsia with late pregnancy and nearly died during childbirth due to a huge drop in blood pressure--according to her midwife. Of course, the technology didn't exist then that does now to prevent bad things from happening during childbirth, and part of the problem was that she lost a lot of blood, apparently. Anyway, she was also very sick/bedridden during post-partum but was never diagnosed with anything (this was in the early 1930's). Anyway, I am NOT trying to scare anyone. At the same time, I do wonder about this finding of a link of stress hormones to Alzheimer's. If we are at special risk, it certainly makes sense to try to lower our risk in the other ways that we can (e.g. diet). Thanks for your interest and concern Corina. Katherine

I took particular notice of this story b/c my grandmother died of Alzheimer's disease in her late 70's. I also believe that she had autonomic dysfunction as she had symptoms very similar to mine, and also had severe problems post-partum like I did. Since we can have elevated levels of stress hormones, I thought this story was somewhat relevant, so thought I'd share. Another reason to eat your fruit and veggies--there have been a number of studies also showing a REDUCED risk of Alzheimer's among people who consumed the recommended 5+ a day servings of fruit and vegetables. Katherine NEW YORK (Reuters Health) - People who have a tendency to worry or feel very stressed out may be more likely to develop Alzheimer's disease later in life, new research reports. The relationship between stress and Alzheimer's disease also appears to be much stronger in whites than in African-Americans, the authors note in the journal Neurology. The nature of the connection between a tendency to worry and the memory-robbing disease is still unclear, study author Dr. Robert S. Wilson of Rush University Medical Center in Chicago told Reuters Health. However, he said that he suspects that chronic elevations of stress hormones may damage regions of the brain that regulate both behavior under stress and memory. Wilson emphasized that this study only connects stress and Alzheimer's, and does not prove that one causes the other. The report "does not establish that distress causes dementia," Wilson noted. But while it's too soon to recommend that people reduce their stress to help avoid Alzheimer's disease, there are many other healthy reasons to relax, he added. "The tendency to experience psychological distress is a trait that we all have to greater or lesser degrees," Wilson noted. "Family or friends concerned about a loved one who is chronically unhappy should encourage the person to see a qualified mental health professional." As part of the study, Wilson and his colleagues asked 1,064 white and black people at least 65 years old about their tendency toward worry and stress, then examined them 3 to 6 years later to determine if they had developed Alzheimer's disease. They found that people who appeared prone to feeling distressed were more than twice as likely to develop Alzheimer's disease within 3 to 6 years. The relationship between stress and Alzheimer's disease was much stronger in white participants, Wilson and his team report. Wilson added that this is the first study to examine the link between stress and Alzheimer's disease in African-Americans. "At this point we do not have an explanation for the racial difference, but we think the finding underscores the importance of including racial and ethnic minorities in this kind of research," he noted. SOURCE: Neurology, January 25, 2005.

Hi J and welcome. Wow. You have been through so much. I wish I had something very useful to say. I can say that yes, many of us have more than one condition. It is also possible to be bedridden with POTS, alone, and it sounds like you are challenged with many things. If you are seeing several specialists, I hope they are all talking to each other, especially since you are on so many different drugs and interactions could occur that you wouldn't want. Have you seen a POTS specialist? They are often electrophysiologists or neurologists. What are you going into the hospital for? I hope you find this forum useful, and that you get resolution on all of your unexplained symptoms soon. Katherine

Thanks for the update. So sorry to hear how tough recovery has been. It must be even harder when digestion is also an issue. Emily--I am also sending healing thoughts your way. You WILL get lots better. Katherine

I completely sympathize. I continue to have moderate problems with crowded, noisy places or places with bright artificial lighting. It is somehow over-stimulating to my nervous system, I suppose. Over time this has improved for me--but I still sometimes have weird vision or can feel a bit light-headed. I don't know if you can completely control it. I always make sure I have had a good drink of fluids and extra salt before a shopping expedition--also I used to bring a drink (gatorade-type of drink) with me if I needed it.

hayley Here's a link to a thread in which we shared easy recipes, most of which would be considered healthy (and I believe all are sugar free). Maybe this would be helpful. I know it is hard to eat well if you are not feeling well, don't have the energy to cook, and food is generally not appealing. Healthy doesn't have to mean unappetizing, though. Maybe you'll find some easy recipes here that you can use. http://dinet.ipbhost.com/index.php?act=ST&f=1&t=1384 I also agree with what everyone has said above--go ahead and splurge on a little chocolate (dark might be better) if it is something enjoyable to you . But, you might want to otherwise try to cut out processed food with added sugar. Good luck. Changing your diet can be very challenging. A diet is a habit and habits can be very hard to break, even when they affect our health. Katherine

hayley--I'm glad you finally heard back from your doctor and I'm glad you have some test results to work with, too. Hope you are feeling better than last week. Take care, Katherine

Thanks tearose for your thoughts. I think this SSRI issue is one of many that demonstrates how little is still understood about POTS causes and treatment. My specialist told me, when he started me on the SSRI two years ago, that only about 50% of POTS patients benefit from SSRIs and it is not understood why. But, because so many do benefit, he starts all of his patients on them to see if it helps. Treatment is *definitely* not a one size fits all approach. Once we get the general medical community to accept and recognize this condition, probably the next hurdle will be getting them to understand the complexities of treatment. I say this from my experience too. I finally found a GP who "knows" about POTS, but his statement to me was, something like, "well after several months on an SSRI, POTS will generally go away". I guess this has been HIS experience as a physician--but it displays a sad want of understanding! Katherine

Hi hayley Now I remember your situation from your previous posts--sorry. It sounds like a big part of your problem is navigating the medical bureaucracy in your country (the U.K.)? I hope you have someone--a family member/friend who can help you with this daunting task and it won't be too much longer before you can get your results and start trying some different treatments under the care of a specialist. In the meantime, I do hope you'll try some of the dietary suggestions to see if they will help ease your symptoms a bit. There are also other non-medicinal routes to try--like compression hose. I'll be thinking of you and hoping for your improvement! Katherine

hayley Of course you can't live like this anymore! And you probably don't have to. I am concerned that you say you have been diagnosed with POTS, but not treated. Is this because your doctor is not familiar with the condition? Have you been evaluated by a specialist--either an electrophysiologist (my personal first choice) or a neurologist or possibly an endocrinologist. POTS CAN just get better on its own, but it can also get worse before it gets better, or perhaps not really get better until you start a treatment regime. If you are getting worse, you really MUST see a doctor who can help you with treatment--my opinion. I know some folks on here have had bad experiences with modern mainstream medicine and would disagree, and I respect that. But, many of us have experienced vast improvement with medications, diet changes, or other treatments, usually under care of a medical doctor. Please don't be afraid to go to a doctor. You are armed with a diagnosis, for one thing! Let us know what you decide to do. I know how hard it is when you are feeling so so badly to find the energy to get help. In the meantime, I hope you can try some of our suggestions, too. Katherine