iheartcats

Welcome to the POTS world, AubreyJane (and welcome to a fellow Californian!). 1. Do cold and the flu et cetera make your symptoms worse? Especially the tachycardia? ---Yes. I get more tachy from being rundown and the flu often makes dehydration worse and that causes me to be more tachy. 2. Have any of you had recovery and relapses in POTS (I feel like I have)? ---Some days are better than others...I had a couple good weeks a few months back and wish they'd return! 3. Without getting to personal, Do any of you take the birth control pill without any problems? ---We talk about quite a few personal things here...so no worries. I used to take the pill, but I stopped after 10+ years due to the increased risk of stroke. It was minimal in my opinion, but it was just time to go off them as I was on Midodrine and didn't want to risk more issues. I now have an IUD, Mirena, which I like. 4. I have read quite a few of you say you have Ehlers-Danlos syndrome. Is this a concurrent disease with POTS (I have never had it mentioned to me)? ---Don't have this. 5. Do any of your have problems with maintaining your blood sugar? Or, have your tachycardia exacerbated by eating to much sugar? ---My blood sugar always tests OK, but I know I should avoid too much processed sugar and carbs. I'm working on that. 6. Any good drink recipes for keep up your blood volume (I am getting so sick of gatorade!)? I mostly drink G2. I need to look into something, too. I think I saw some drink packs at REI.

From what I've discussed and understand - to have a successful disability claim you have to have good, documented medical records and have made an effort to control your symptoms to try to work. At least that's supposed to help. You show you've done all the treatment available for your particular disease and are still too ill to work. And you can't really be working while filing for disability. I know what you mean - I have to try to work full-time again and see how it goes. If I can't tolerate that, then part-time. Disability takes a while to get approved (is the average something like 2 years?). And I don't think you can really be working during that time, so it's such a difficult process and position to put people in. I'm sure there's borderline people who can barely work part-time/full-time but have no choice (and can't do anything else/have a life) but can't file for disability because they have earnings. Good luck whatever you do and hopefully someone here who's applied can walk you through. I've also heard a good, supportive doctor is helpful, but don't know if that is across the board or more for certain individual cases.

The more one reads about all this, the more you see crossover from Dysautonomia and POTS. How do you know you have CFS though? The symptoms are so similar sometimes.

I have a feeling my Lyme test will be normal too! My first 24 years of life were a high Lyme area...the next few were a more moderate area...but I've read about dormant Lyme disease...doesn't show on tests and hides. So I wonder, what ELSE could do this and make us worse? I try to eat beans and broccoli and try to remember my vitamin with Iron. I'm always on the very low/borderline of anemia but I have been for my entire life. I wish there was an easy way to test CBC at home. I'll let you know what the Rheumy says (about positive versus negative ANA). Maybe ANA is only positive during flares? My former Rheumy I saw once said some people have Lupus but it doesn't really ever manifest. Watch for the symptoms, but hope it stays dormant. Comforting!

Not sure - from what they are saying the shot is the 'same' (made the same way, at least)...so I'd think about 2 weeks? It is hitting hard. I know people with it now. If you get it before the shot, then no need for the shot, right?

I get muscle aches, fatigue, and chest wall pain. I was thinking the other day how my chest wall pain would probably freak out a normal person, but I just go along and assume it's somehow tied to POTS. I have had positive ANA tests (have you ever had one?). I was sent to a Rheumotologist with a suspicion of Lupus...but then my tests came back negative again. It's back and forth with the tests and rather annoying. Do you ever get Livedoid Vasculitis (http://www.mayoclinic.com/health/livedo-reticularis/AN01622). Someone on the board finally told me what it was. I've had it a long time on and off (arms/legs) and no clue it had a name. Could be another Autoimmune issue, could be nothing. But my PCP is sending me to a Rheumotologist to discuss it as it's not his expertise. That's in a couple weeks so I'll post if i learn anything about it that could be helpful for someone. I hate the fatigue. I don't eat red meat or pork and barely any chicken so my anemia gets low and makes the fatigue worse! Are you tachy at all? Anemia makes mine worse, but I'm on a BB now to help. My former Cardio wants me to get a Lyme Test (just in case) so I have to go in and talk to my PCP about that (who can call the Cardio if he disagrees so hopefully I can get it). I think it's just a blood test. But...then what do you do - you said you've been tested for viruses but I think there could be Viral issues (even older RNA retroviruses from what I've read recently) that could bother us. Does the body eventually fight these off? I hope so. But that doesn't help us now. I feel for you because I know where you are coming from - and I have to get back to work and it's not easy with the good weeks and the bad weeks.

I just left last spring! The last two winters were just a real pain for me. But...you have great doctors there. I hearted my Chicago doctors!

I just had the regular shot last week - I was told my doctor office won't have the H1N1 shot until two weeks from now. Have any of you actually got the H1N1 shot or are you still waiting? The mist isn't an option - it's really not for people with chronic health issues, I was told. I have two weeks to decide. I'm now leaning toward the shot - 70% for/30% against. I may have to place my faith in the usual place - science - and hope it works out!

I really like my Polar. Easy to use and accurate. Before my Beta Blocker easily caught up 200+ moments on stairs and stuff. I try to wear it often but haven't been lately. When I work I wear it all day. And of course for exercising. You don't need a super fancy model. The $99 one is great for our needs!

Thank you everyone! I'll definitely look into non-family plans. I think partly they are so costly as they include children - which I don't have - so it'd be such a waste of $$$. I don't have any professional association that I know of with marketing. But I'll check out things online just in case. Health insurance shouldn't be so difficult and confusing.

I got the regular shot. The nurse who gave it to me is not even wanting to get the swine flu shot, but they are making him. He told me to wait a bit and see how it plays out. So, today I got the regular flu shot as I do every year. The bit of feeling crappy for a couple days has been worth the protection for him. The H1N1 shot? Very worried about that, too!

Hello everyone! I've been researching - it's so overwhelming. California requires insurance companies to cover me on HIPAA (but at a more costly monthly fee, something like $500-$600, on their two most popular plans) if I can sign up within 63 days of losing coverage. I'm gathering as much paperwork as possible to be ready, but don't know how fast I can force the current insurer to send the Certificate of Coverage letter once it ends. This way preexisting conditions are covereed. I still have not found out if I can do this: can my spouse do a separate plan (so we'd each seek our own, rather than family, coverage). Family would be $1000! But he can get an individual decent plan for around $150-$200. There is frustration as it can take weeks to process your application and they don't have back coverage. I can only apply when I learn for certain about our situation. There is no COBRA option (size of company/situation). I've had to do COBRA before and while costly, at least it was easier to deal with. At this point, I'm capable of a sit-down office job with no to minimal travel. So many jobs still want travel in this economy! But I know realistically it'll take 3-6 months to find something as the economy is so bad. I have to see if I can handle work and go from there. I'm not to the point where they would approve disability. But I really can't travel for work anymore. I know my limitations. I'll contact Earthmother too - thank you. That will help. I'm going through so much right now it's hard to think clearly!

I may not have health insurance after 10/31. I just found out today and am very upset. I wish something would've passed on the healthcare reform front because there are so many issues that are just unfair to us (including pre-existing conditions, health care tied to your job, etc.). What can I do in the meantime to prepare for the worst? I'll know for sure in a couple weeks. I looked into a 'local government' healthcare plan in San Francisco and I meet the requirements except having no health insurance for 90 days. That's a gamble I don't want to have to take, but may not have a choice. I get so upset even thinking about it. 90 days with no coverage! Medi-cal isn't an option as I don't have children under 21 and/or am not on disability and/or over 65. One shouldn't have to be completely disabled or have a child to get healthcare. I know there is HIPAA here, but I'm afraid my policy will be priced out of my range...does anyone know what that premium limitation is? "What can I be charged for my individual health insurance policy? -If you are HIPAA eligible, California law limits the premium you can be charged. Even so, you may find that your premiums are quite expensive." Guys, I'm so upset. I just don't know what to do.

I found the article on Scientific American and will paste it here. But - how closely IS CFS linked to POTS? I have bad fatigue and muscle/body aches - those are two of my worst symptoms. Is this something I could ask the Rheumotologist in my upcoming visit? Second, the reverse transcriptase inhibitors medications have very serious side effects in addition to being very costly. Would these need taken forever if they work? Or are they medications that could 'heal' these retroviruses? ARTICLE: SciAm.com News - October 8, 2009 Retrovirus Linked to Chronic Fatigue Syndrome, Could Aid in Diagnosis Recently implicated in some severe prostate cancer patients, the retrovirus XMRV has now been found in many with chronic fatigue--changing the landscape for diagnosis and possible treatment By Katherine Harmon Click here to find out more! More so than many illnesses, chronic fatigue syndrome (CFS) frustrates those who suffer from it and those close to them, due to its nebulous assembly of symptoms, along with continued controversies over its etiology, diagnosis, treatment and even its nomenclature. Now, the discovery of a familiar retrovirus in many CFS patients could bring new energy to the field?and fresh hope for more specific medical care. Chronic fatigue is in part a misnomer. The syndrome often has more to do with immune system abnormalities than pervasive tiredness?although the two can go hand in hand. The symptoms range from exhaustion to muscle pain, giving CFS a reputation among some as a "wastebasket diagnosis". The slipperiness of the syndrome is in part because "it's diagnosed based on exclusion," says Judy Mikovits, director of research at the Whittemore Peterson Institute for Neuro-Immune Disease in Reno, Nev., and co-author of research on the retrovirus findings published online today in Science. Doctors often apply the label if no other explanation can be found for a patient's symptoms, which may be part of the reason it seems to pop up in everyone from overworked career women to continually sick children. Roughly 17 million people worldwide are thought to have CFS, but given current diagnosis methods, the true number could be much higher or lower. Having a specific virus to look for would make for much more robust tests and possibly even be a step toward treatment. Mikovits's team thinks they have found just such a candidate. The xenotropic murine leukemia virus?related virus (XMRV), a type of gammaretrovirus, has recently been linked to strong cases of prostate cancer. Like CFS, this cancer involves changes in an antiviral enzyme (RNase L). The prostate cancer discovery, described last month by Ila Singh, an associate professor of pathology at the University of Utah in Salt Lake City, et al. in the Proceedings of the National Academy of Sciences (PNAS), along with a traditionally high incidence of cancer in CFS patients, got Mikovits and her team thinking: Would they find the same retrovirus in people with CFS? After analyzing biological samples from more than 100 CFS patients for the retrovirus, two thirds of them were found to test positive for the virus?compared with 3.7 percent of 218 healthy volunteers who were screened. To find the retrovirus, Mikovits and her team studied documented cases, such as CFS outbreaks in a symphony orchestra in North Carolina and in Incline Village, Nev. "We found the virus in the same proportion in every outbreak," she says. But how are people getting this retrovirus? "Ila's work shows that everyone's susceptible," Mikovits says of the PNAS paper by Singh that illustrates the link between prostate cancer and XMRV and shows that the virus is not linked to a genetic mutation. Experiments in Mikovits's lab proved that the retrovirus can be transmitted via blood by infecting healthy cells drawn from volunteers with material from XMRV-positive CFS patients. Mikovits hopes to soon have a better understanding of how the virus might be transferred in the real world, especially among families. If it, for instance, is like human T-lymphotropic virus type 1 (HTLV-1), it may be communicable through breast milk or if it's like a herpes virus that is common in CFS, it may be passed along to offspring. Precisely how this virus is related to chronic fatigue, however, remains a mystery. One of the problems with tracking down CFS is that it may not be a single ailment. "We think that the problem is that CFS is a collection of many, many different diseases even though it has similar symptoms," says Brigitte Huber, a professor of pathology at Tufts University's Sackler School of Graduate Biomedical Sciences in Boston. She and others suspect that the retrovirus may be unleashing other underlying conditions and viruses in the body. "This new retrovirus may be able, through infecting human cells, [to] induce a transcription of an endogenous virus," says Huber, who has been studying the presence of an ancient retrovirus (HERV-K18) dormant in most people but active in patients with CFS and multiple sclerosis. "We've already shown that Epstein-Barr virus can do exactly this." Even in their testing for the XMRV retrovirus, Mikovits says, "We could see a human endogenous virus at the same time" as XMRV. "There are a number of old diseases that seem to be rising at an infectious rate," she says. Although this background noise of various viruses may be difficult to sort though, it brings clues to help researchers find the root cause of CFS. "It's possible, downstream, that this will all feed into the same mechanism," Huber says. Even before the precise mechanisms are found, work toward finding treatment proceeds. Animal model testing is already underway, and Mikovits notes that her team is looking into some reverse transcriptase inhibitors that have already been approved by the U.S. Food and Drug Administration for other uses. "Now we have a drug target and a marker," Mikovits says. "If we treat them with a drug and they get better, we win." In the meantime, her team has been making quick strides toward a simple diagnostic test that doctors could use to check for the virus. Tests have been running smoothly in the lab, she notes, with some diagnostics companies already interested in the technology. She predicts a test will be available in less than six months. Mikovits adds that she is "excited that we will actually have some causes?rather than just building a better wheelchair."

What is the 'body type' for hyperadrenergic, if you don't mind sharing?

I hope someone is monitoring this big flu season, then - will there be an upswing in Dysautonomia cases? I just wish it'd get more exposure. I would think there are a lot of people suffering undiagnosed like many of us did! Plus, the more research and input, the more chance everyone has of a 'cure' or at least something that will help heal us. I didn't notice major, disabling symptoms until that flu. So that's why I really think it was what pushed me over. Even if you're pre-disposed doesn't mean you'll get something for sure (think of the cancer genes, etc). And if it is some type of damage...so much of the human body can heal. Guess we just keep hoping.

I'm glad you are feeling better today. I feel so sad sometimes, too, thinking how things should have been - but I remind myself there's nothing I can do about it. You have to deal with what's given to you rather than how you wanted things to turn out. It's been a harsh lesson for me as I took things for granted. It can be very difficult to deal with sometimes. I hope Mestinon and Lyrica help you. I'm on 30mg/Mestinon twice a day. I tried 60mg/twice a day and think it worked almost the same, but with too much stomach issues. 180mg/timed release was way overwhelming. I had the overdose symptoms. But I like the 30mg/twice a day. I think it helps a little, not a huge amount, but a little. The first week...I don't know how to say this delicately. I had to poo. A lot. and like NOW. Then it stabilized. Let us know how these meds work for you! I'm not off my meds yet...and don't know when I ever will be...but I think my meds have me to the point where I'd like to work. I figure I can try a full-time and keep looking for part-time - I tell myself I'll try as much as I can. What's the worst thing that could happen? I'd have to quit, right, and hopefully find a part-time job? The world wouldn't end. Maybe your meds will help too, and open up more options. Without mine I'm not very functional. I'm about 50% better with my meds. And about 10-20% better with hydration/salt/diet. Sometimes it feels like we have to find this perfect storm of what works for us. Not the easiest way to live life, but we have to live and do what we can for ourselves.

There's so much flu hype right now, and I never hear about post-viral problems that can come with a virus. I'd never even heard of POTS (related issues) until I was blessed with it. I'd consider myself somewhat informed and the only long-term thing I'd heard of was Lyme Disease. If people knew things like POTS could happened from viruses maybe more people would get diagnosed, more research would go into it, and we'd be more understood. Do you guys think it takes a 'worse than usual' flu to trigger POTS? I know that's what I had before my POTS symptoms really flared a couple months later. The reports I'm hearing of most people with the Swine Flu aren't as bad as what I dealt with during that flu. I never went to the hospital, I was told to rest and stay hydrated and try to eat. Which I did...but who knew it'd lead to damage to my ANS. Was there any way to prevent that?

I'd call your doctor and tell him you can't keep foods down - what should you do? I know staying hydrated is very important, so I am glad that you are. Can you tolerate broth or Gatorade? I think I lived on Gatorade for a couple days with a flu a couple of years back. Can you even tolerate those white crackers (Saltines here in the States?) I'd try to get in touch with your primary doctor as soon as possible - let them know it's urgent when you call and say you are considering going to the hospital but you wanted to get your doctors input first. They should call you back quickly, I'd hope! If not and you are feeling very weak, you can have someone take you to the hospital.

Has anyone read this or have any further information? (Edited to add...most Canadian Provences have suspended the seasonal shot for now...I didn't have room to list them out so I just put Canada in the headline) What really jumped out at me was that a major Provence was suspending flu shots for now and others have followed. It's Canada, not a small/third-world country. Do we have any Canadians who are hearing more about this? I'm still deciding what, if any, shots to get and I was surprised to run across this information. I just wish the paper was published so we could make a more informed decisions! It's under 'peer review' so can't be discussed. Link and Article: http://www.theglobeandmail.com/news/techno...article1303330/ A “perplexing” Canadian study linking H1N1 to seasonal flu shots is throwing national influenza plans into disarray and testing public faith in the government agencies responsible for protecting the nation's health. Distributed for peer review last week, the study confounded infectious-disease experts in suggesting that people vaccinated against seasonal flu are twice as likely to catch swine flu. The paper is under peer review, and lead researchers Danuta Skowronski of the British Columbia Centre for Disease Control and Gaston De Serres of Laval University must stay mum until it's published. Met with intense early skepticism both in Canada and abroad, the paper has since convinced several provincial health agencies to announce hasty suspensions of seasonal flu vaccinations, long-held fixtures of public-health planning. “It has confused things very badly,” said Dr. Ethan Rubinstein, head of adult infectious diseases at the University of Manitoba. “And it has certainly cost us credibility from the public because of conflicting recommendations. Until last week, there had always been much encouragement to get the seasonal flu vaccine.” On Sunday Quebec joined Alberta, Saskatchewan, Ontario and Nova Scotia in suspending seasonal flu shots for anyone under 65 years of age. Quebec's Health Ministry announced it would postpone vaccinations until January, clearing the autumn months for health professionals to focus on vaccinating against H1N1, which is expected to the more severe influenza strain this season. “By the time the H1N1 wave is over, there will be ample time to vaccinate for seasonal flu,” Dr. Rubinstein said. B.C. is expected to announce a similar suspension during a press conference Monday morning. Other provinces, including Manitoba, are still pondering a response to the research. New Brunswick is a lone hold-out, announcing last week it would forge ahead with seasonal flu shots for all residents in October, as originally planned. So far, the study's impact is confined to Canada. Researchers in the U.S., Britain and Australia have not reported the same phenomenon. Marie-Paule Kieny, the World Health Organization's director of vaccine research, said last week the Canadian findings were an international anomaly and could constitute a “study bias.” An international panel is currently scrutinizing the research data. “The review process has been expedited, so we're hoping for a response within days,” said Roy Wadia, spokesman for the B.C. Centre for Disease Control. Dr. Rubinstein, who has read the study, said it appears sound. “There are a large number of authors, all of them excellent and credible researchers,” he said. “And the sample size is very large – 12 or 13 million people taken from the central reporting systems in three provinces. The research is solid.” The vaccine suspensions do not apply for people over 65. Seniors are considered more susceptible to severe seasonal flu symptoms. At the same time, they carry antibodies from a 1957 pandemic that seem to neutralize the current version of H1N1. Even if the statistical link is proven, the medical link between seasonal flu shots and H1N1 remains mysterious. One hypothesis suggests seasonal flu vaccine preoccupies the cells that would otherwise produce antibodies against H1N1. But, according to Dr. Rubinstein, the research shows that people who received the seasonal shot during the 2007-08 flu season remained vulnerable to swine flu well into 2009 – an interval that should provide most immune systems ample restoration time. “We don't understand the mechanism,” Dr. Rubinstein said. “At the present time it is quite perplexing.”

Thank you so much everyone! Within a couple of minutes of taking the antibiotic, I started to get hives on my arms - very itchy, too. Then my chest. My 'random hives' are never this itchy/bad (the kind the allergist said to try not to worry about, just control). So it was definitely tied to the antibiotic. I even had some on my face the next day (beautiful!). I'm pretty sure I had a rash to Cipro years ago, too. Could never quite tie it to Cipro as it happened an hour or so later but my doctors say not to take it and have it listed on my allergies. I'll have to research the tie-in to Cipro. I have a face cream with antibiotic in the same family I'm afraid to even try. I'm frustrated because it was $$$, but of course I had no clue of the allergy, either.

This is pretty much what I was told (and you can find this information if you Google): "If you have food, medicine, or insect-sting allergies, beta-blockers may cause allergic reactions to be worse and harder to treat." Before I started my BB, I decided to get a skin-prick test for foods, it was clear. We never figured out why I hived out from Cashews. I guess it could've been a coincidence, but won't eat those things at all now! I recently had an allergic reaction to an antibiotic (went to bad hives/slight difficulty breathing) but was OK after Benadryl. I suppose if I kept taking that antibiotic the reaction could get worse, but I'm not going to test that theory. There are some articles discussing this from major medical journals - weighing the benefits of the BB versus the chance of a harsher allergic reaction. I can't find anywhere it's proven, though. I found this: http://www.highbeam.com/doc/1G1-116336952.html "New research shows that beta-blocker therapy should still improve the survival rate in patients who suffer from peanut allergies and have heart disease, according a study featured in the May 2004 Journal of Allergy & Clinical Immunology (JACI). The JACI is the peer- reviewed scientific journal of the American Academy of Allergy, Asthma & Immunology (AAAAI)." I wish I could find more studies on how 'common' the severe reaction is - anyone have any data? It seems as if more needs to be studied about this. I don't have access to this, but it looks like it could be interesting: http://journals.lww.com/euro-emergencymed/...duced_by.9.aspx Abstract "Increased risk of severe and resistant anaphylactic shock is a rare and not widely known adverse effect of β-blocker treatment."

I'm so sick of reactions! My PCP said no more of that Antibiotic and I'd likely have hives on and off a couple days which I could treat with Benadryl. I'm worn out from all this...and taking so much allergy medications is tiring. Am I likely to have issues with other Antibiotics?

This is all very interesting! Did you see a doctor 'tied' to a dispensary? I'm not sure how it works out here. Can you share how it helps you sleep? That's one of my big issues. I hate taking Ambien too often - one, it can make me slightly more tachy (which can be a side effect of Ambien), two, it isn't effective over a while. I only take it now and then, but would like to have better sleep overall. This is an even bigger concern when I have to get back to work. Thanks!

I'm half awake - so forgive any incoherency! This one seems to help me feel about 40% better, I'd guess. I also have allergies and sensitivities, and they didn't get worse on Propranolol. I only take it 2-3 times a day (depends how early I get up) and use the 20mg pill. 40-60mg a day is a low dose of this, but yet enough to really help me. You can Google it and see what else it's used for off-label, but it seems to have been around a while and used for a variety of things so I personally feel 'safer' on it because it's been in use and tested for so long. I just think it's less likely to sneak up on me later with weird side effects that were unknown because it's a new drug. I'm fortunate I got a BB I really like on the first try. (And of course I researched here first because I had to start somewhere and start with one of them).