Poohbear

I do not have any suggestions or answers to your questions but hopefully someone here will be able to give you some input. I just wanted to say I'm sorry you are dealing with all of this and I hope you get some answers soon

Awwww Melanie!!!! I HATE that you are having something new to deal with!!!!! I know you hate it too!! I have been getting lots of spinning vertigo the past 4-5 months. For me, it seems to be tied into migraine (both with and without aura and with/without head pain) and it also seems to be hormone related for me. I DO NOT understand the hormone component to vertigo but after watching it for several months there is clearly a connection between the two in my case. Like you, mine come on sudden and sometimes last a few days. I haven't found much that helps other than lying around. Keep us posted on what your Dr says and if you find a connection to your symptoms or anything that helps you. Hugs!

Thanks for the many wonderful ideas!! Keep them comin'

I actually get more when I lay on my left side. I don't know why.

For where we are at this point I don't see how a conference would be feasible but it's something that in time might occur. It would require LOTS of money and I don't think most of our members would be able to afford it. Sophia, the reason for the poll is that I have some ideas (but not enough energy to work on ALL of them) so I decided to try to get a feel for what our members greatest needs/desires are and then try to work toward seeing if there was some way I could come up with one area of focus. Most anything we do would require $ (a mix of us raising money and hopefully grant funding). But....to get to that point you have to have a clear vision, plan, estimates of cost etc etc. So....I am asking to try to come up with some ideas so I can further research, organize and propose something to Michelle and the members of this board that is "sound" and "doable" Yep....I could use a George Clooney to drive and cook for me too I don't think there will be any grant money for that though!!

Sounds like you need a different Dr. If your Dr isn't helping you and the pain is getting worse, you may want to consider going to the ER and letting them know you just had a shot on Monday and it didn't help you. You may also need IV fluids if you aren't eating and drinking. Ask for a referral to a migraine specialist

Thanks everyone for your replies so far!!! Gelann, thanks for your input! I too would LOVE to have a Dr on to answer questions but I know that will never happen. For one thing there are legal issues involved with that. Another big problem is there are only a handful of Dr's/researchers that would be able to really answer many of our questions and they don't have time to spare. Tearose, I hear you!! I think the literature is a great idea and a doable one if we can get funding or raise enough $. The conference would be really nice as well. Personally, I doubt I could attend a conference unless it was local or no more than 250 miles away. I know a lot of us would not be able to travel but we can certainly think about it and look into it.

I'm brainstorming here and wanted everyone (newbies and old timers alike) to give your input.

Syncope in migraine: the population-based CAMERA study. Thijs RD, Kruit MC, van Buchem MA, Ferrari MD, Launer LJ, van Dijk JG. Department of Neurology and Clinical Neurophysiology, Leiden University Medical Center, National Institute of Public Health and the Environment, Bilthoven, The Netherlands. r.d.thijs@lumc.nl OBJECTIVE: To examine the association between migraine and syncope-related autonomic nervous system (ANS) symptoms. METHODS: A population-based study among migraineurs with and without aura (n = 323) and control subjects (n = 153) was conducted. A systematic questionnaire and cardiovascular measurements during rest, while standing, and after venipuncture addressed the prevalence of syncope, orthostatic intolerance, orthostatic hypotension (OH), and the postural tachycardia syndrome (POTS) in migraineurs and control subjects. RESULTS: The lifetime prevalence of syncope in all participants was 41%, more often in women (45 vs 32%; p = 0.02). Compared with control subjects, migraineurs had a higher lifetime prevalence of syncope (46 vs 31%; p = 0.001), frequent syncope (five or more attacks) (13 vs 5%; p = 0.02), and orthostatic intolerance (32 vs 12%; p < 0.001). There was no association between ANS symptoms and the severity of migraine or migraine subtype. Cardiovascular measurements and the prevalence of POTS and OH did not differ significantly between migraineurs and control subjects. CONCLUSION: This population-based study demonstrated an elevated prevalence of syncope and orthostatic intolerance in migraineurs without clear interictal signs of autonomic nervous system dysfunction. PMID: 16606915 [PubMed - indexed for MEDLINE]

Is she always like this or is this a more recent change? 93 to 106 is a bigger range than the majority of us with "just" POTS experience. If her range has always been this wide then it's possible she's fighting a virus of some kind. Has she been checked for mitochondrial disorders?

Well, I'm glad you got through the procedure but sorry you are having such trouble with nausea!! Please get the nausea med in you as soon as you can and try to get fluids in. Sipping on popsicles, chicken broth or gatorade may be your better bets on keeping things down. Just go slow and don't be afraid to call your Dr or go into ER for IV fluids if you don't start feeling better or if the meds don't keep you from throwing up. Hope you feel better very soon!!

Just my opinion but I think we need to raise our goal and keep going or add a second goal that would carry us to the end of the year. Another thing about this....as I've been looking into trying to do some grant writing to obtain some funding for us....if we can show that we can raise some money and keep small projects going on our own through our own hard work and effords then funders will be more likely to want to help us. They do look for stability and dedication in us first so this is a great way to maybe help get the ball rolling on that front as well. Thanks to everyone who has been involved in this and who are able to donate!! Fund raising is sometimes a not -so- fun part of running an organization but it's the only way we can even think about getting the word out and educating Dr's as well as supporting patients and families.

FMLA time is federal law and totals 12 weeks. They don't have to pay you for any of those days but they do have to hold your job. The 12 weeks can also be counted in hours or days so that if you are chronically ill and let's say, for example, you had to have chemo and miss 4 hours of work one day a week then they would accumulate those 4 hrs. Once you reach the 12 weeks or the hourly equivalent then your job is no longer protected by federal law. However, it's still a good idea to check with ADA or JAN (Job accomodation network) to see if they can help guide you in YOUR particular case. Otherwise, I would say do NOT resign if you think you may need to make use of either social security disability or long term disability because being fired (vs. resigning) will possibly strengthen your case. If you do get fired, make sure your boss makes it clear in your paperwork that the problem is attendence/illness so you have proper documentation which will support your disability claims.

Thinking of you and your family. Allow yourself time to feel your feelings and grieve and treasure all the moments you have with him.

HAPPY Birthday!!!!

I'm so sorry for your loss. Her family and friends will be in my thoughts and prayers. Thanks for letting us know

I may be an "oddball" here. I don't fight low blood pressure as much as many of you do; I have the opposite of high blood pressure but I do also have the nausea. In my case it seems my nausea is much worse late in the day and in the morning. I have been diagnosed with gastroparesis and I really think that is the culprit for me. I also have more nausea with hormone fluctuations. Eating small, more frequent meals has helped slightly. Have you tried checking your bp in the morning before you get up and out of bed to see if it is low and if so, how low? That may be a place to start to see if there is a connection. Otherwise, you may want to try making sure you eat dinner at least 4 hours prior to bedtime and don't eat anything after that and see if that helps the early morning nausea any. The only other thought I had was some type of hypoglycemic problem. Have you been checked for all of that?

I have taken potassium on and off for a while now. Florinef definately did a number on my potassium level and even prior to that (and since then as well) I had potassium issues. Somewhere in one of the research articles it talks about how stress can deplete potassium as well. Keep in mind, "Stress" is not defined as only "emotional" stress but physical stress and what your brain/mind perceive to be a physical stress, which is what we sometimes even think of as "good" stress. I used to take K-Dur 20 Meq and it was really too much for my stomach. K-Dur was also not coated. I switched to Klor-Con (which someone earlier implied that these brands are one and the same but I'm not sure that's correct simply because I recently tried to go back to the 20 meq K-Dur and it was different mfg and everything and we again went back to the Klor-Con). I can take Klor-Con which is a coated tablet and I can take 8 meq. I do better taking smaller quantities more frequently through the day. I do have to eat food with the med too. I find that the K does lessen the severity of my autonomic storms and when my levels start dropping low again I start having bad flares so that's one of the first things we check. I was always told that people who don't have sufficient K or are for some reason depleting it really don't benefit from the supplements because they just don't provide the same amount/chemical structure that the rx does. Maybe you could supplement your diet with lots of K rich foods and try the 8 Meq but talk to your Dr. I'm allergic to banana and avocado which both have lots of K so I eat baked sweet potato which have a high potassium content (more than white potato). I also drink Juicy-Juice (found in the fruit juice isle of most grocery stores). The cherry flavor (which to me really tastes more like a grape punch mix) I believe has the highest potassium. I also like it because it is preservative fee and all natural. Broccoli is also high in K. Good luck with this and let us know how it goes for you

Okay.....so it seems that my body has decided that whenever I go out of town, it's supposed to visit and tour the local hospital. This is NOT my idea of fun or relaxing. I do not understand why traveling takes so much out of my body and sets me back so much. Except....I will also say that the last three times this has happened to me, I was also starting my period and having horrible hormone issues. I'll write more later about the follow up I had this week with Vanderbilt's Autonomic Clinic. We were supposed to leave friday to drive back home but....my body decided to go all whacky on me. My heart was beating really weird and it woke me up. I had to flop and plop around to get it to stop and when I did I ended up with bad chest pain. This was a different feeling than I've ever had before. Couldn't reach the autonomic Dr's so I went to the ER and spent the day there. Once in the ER they were able to reach the Autonomic Dr's so at least I had their input and support in the situation but it was still a scary day. Anyhow, first labs showed some abnormal cardiac enzyme levels and while it is disconcerting, it appears I did not have a heart attack nor am I about to have one (based on the fact that my enzyme levels did not elevate any higher hours after the first test). Eventually they released me but I'm not feeling well, exhausted and my ride is not able to take me back tomorrow. Saturday I will hang out at the hotel by myself and Sunday my ride will return in attempts to try to get me home on Sunday. I'm anxious about traveling back because I feel rotten and I'm afraid I will feel even worse traveling again. It's a nasty cycle too because I'm usually NOT fighting anxiety but right now I am and I know that will only make it more likely that I will get symptomatic. I've been on the phone a lot this afternoon which actually turned out well because it kept my mind off of traveling and the anxiety (so to those of you I spoke with today THANK YOU because even though you may not have realized it, you were helping me stay focused on other things and thus keeping my anxiety level down). Hey, anyone want to chat while I'm stuck in a car tomorrow? hehehe I'm also thinking about calling a friend and asking if she will come stay with me tomorrow night once I'm home. Maybe it sounds silly....I just think I might relax and re-adjust if I have some company to help settle me back in. THanks for letting me vent!

I would recommend you print some info off of this site about POTS as well as some articles from Dr. Low or Dr. Robertson or Dr. Grubb from pub med to take with you to your appt. Copy whatever you print off and also mail a copy directly to your social security office return receipt requested. Keep the original for your file. I would also write a list of your symptoms down and how they prevent you from working. Your Dr and anyone reviewing your claim needs not only your diagnosis but why your symptoms keep you from sitting, standing, bending, lifting, reading etc. (exactly how your symptoms prevent you from working). Having an illness or condition alone does not determine eligibility for soc sec. but rather how your symptoms prevent you from working is really what they want to know. P.S. This may be a good article for you to print from pub med From Journal of Cardiovascular Electrophysiology The Postural Tachycardia Syndrome A Concise Guide to Diagnosis and Management Posted 02/07/2006 Blair P. Grubb, M.D.; Yousuf Kanjwal, M.D.; Daniel J. Kosinski, M.D.

I had to stop working primarily because of near syncope (which was really dangerous since much of my time was spent on the road), severe uncontrolled tachycardia that was not responsive to medication and fatigue. I had plenty of other symptoms but these were the ones that intially took me out of work. Migraines were also a big issue. I tried cutting back my hours, working from home and kept getting worse so eventually I went out on total disability and haven't been able to go to work in any capacity since that time. I really miss my career a LOT!!!!

I was just re-listening to the conference tapes from NDRF's 2000 conference the past few days and they stated that really any change between 10-15bpm upon standing is normal. 20-25bpm would be slightly abnormal but not enough, by itself to be considered a problem.

Nina, Your stepfather and your family will be in my prayers.

You really need an autonomic specialist to evaluate this because MOST Dr's do NOT know how to distinguish the two (although most of them have good intentions). Vanderbilt and Mayo told me that it is highly unusual to see a patient that has both POTS and IST. It's often POTS misdiagnosed as IST. Having said that, my episodes were caught from start to finish while at Vandy and they were able to determine from those rythmn strips that I do have a seperate IST in addition to the POTS. They still told me absolutely "No" to having ablation because it would make my overall condition much worse. They said the only time they would recommend having ablation is if the heart rythmn is irregular (not just fast). If you can't see an autonomic specialist then at least see a couple of EP cardiology specialists to see if you can get this narrowed down. Either way, meds are often effective at treating a fast rate for both IST and POTS so that should be your first route.

Wanted to let you know that Neil, who was a member of NDRF, passed away a few months ago from complications of dysautonomia. We are just now learning of this and are deeply saddened. Many of you who have been "around" for a while and who also visit NDRF will remember Neal. This is from NDRF's site: "I'm sorry to tell all of you this. When I saw Bill's post I tried to call Neil; wasn't able to reach him. I had a very bad gut feeling about it. Based on that gut feeling I did a search with the local newspaper and found that Neal passed away on Jan. 24, 2006 I had talked with Neal by phone off and on the past couple of years. He was of great help to me and was struggling so much himself. He will be missed by many of us. Here is the cut & paste of his obit. NEIL FRASER Neil Fraser, a 74-year old retired advertising executive, died at Northside Hospital on January 24 due to complications of dysautonomia. The youngest son of Scottish immigrant parents, he was a native of Belize, in the crown colony of British Honduras, now the nation of Belize, where he spent the first sixteen years of his life. He came to the U.S. in 1947 to attend Georgia Military Academy (now Woodward Academy). He completed his college education at Georgia Tech and Georgia State University. He began his advertising career in 1958 as an account executive with George & Glover Advertising. In 1963 he founded Fraser Advertising, Inc., an advertising agency which he directed for 33 years until closing it and retiring in 1996. He was pre-deceased by his wife of 41 years, Barbara Biggs Fraser, who died in 2002. He is survived by his sons, Bruce Fraser of Evergreen, Colorado, Stephen Fraser of Chapel Hill, North Carolina, grandson Adam Fraser of Evergreen, Colorado, and granddaughter Lula Fraser of Chapel Hill, North Carolina, and sister Mrs. Joyce Bickers of Atlanta. Mr. Fraser was widely known for his expertise in the area of co-operative advertising, or co-op. He spoke at industry events and authored many articles for trade publications on the subject. He was also active in civic affairs and served as president of the Northside Exchange Club. He maintained lifelong interests in aviation, photography, and the arts. He was a published poet, and a member and former contest chairman of the Georgia Poetry Society. He also wrote about his childhood in Belize and catalogued an extensive collection of historic photos of Belize for several web sites. An enthusiastic artist, he enjoyed sketching friends and relatives. He was very proud of his Scottish ancestry, for which he was often called "Scotty" by friends, relatives, and schoolmates. Until disabled by his illness, he delighted in wearing his Fraser Clan kilt to the annual Stone Mountain Highland Games. His family requests that friends join them to remember Neil Fraser on Saturday, January 28, 2006, at his house any time between 1 and 5pm. Questions may be directed to Stephen.Fraser@gmail.com. Arrangements by H.M. Patterson & Son, Arlington Chapel, (404) 851-9900. Published in The Atlanta Journal-Constitution on 1/27/2006. "