Sophia3

Susan If I had had the Epley done, I would've HAD to have been driven home but then I would've made such reservations. I read where one should sleep up in a recliner...but what if one doesn't have one? Though I realize the importance of that. That's also why its' So IMPORTANT to get the timeline down on the B-D exercises...30 seconds in each position and then sit up in between. Though those exercises when one is already nauseated, is like being FORCED to ride an amusement park ride against one's will. And then I drink ginger tea afterwards or do something else for the nausea. THAT can be a rough time but I now know it will help get thru the spells in time. Oh, and I SO GET the feeling like the room is tilted to the right and I am walking on a diagonol floor. SCAREY since that stuff sounds and feels like a stroke. I feel like I am LEANING left via a magnetic pull. I have to grab furniture and walls to get to the bathroom on these days. Good luck to all who have this vertigo junk.

I can do coffee but only in the morning and drink a mix of half decaf and half caffeine. i can do chocolate as well. BUT I CANNOT do large carbs, especially with low fat versions. LEAPS the sugar/carbs into my blood stream and i get hypoglycemic and horrendous post prandial hypotension (after meal low BP) but we are all different. In general. carbohydrates work as a vasodilator for most POTS pts and are like a drug if we eat large batches. Also Garlic is a major vasodilator AND one of my favorite flavorings but not anymore. The few times I now eat garlic I am extra cotton mouthed afterward, it makes me pee and I am terribly dizzy a few hours after eating. Garlic is good for many things but it ESPECIALLY can lower BP and it certainly does in my case. So that kind of stinks if you love garlic. I can do ice cream but only in small portions and normal ice cream with fat. I can NOT DO ANY FAT free stuff due to the glycemic index problems. I like to balance my proteins carbs and fat when I can.

I am sorry I forgot to add the vertigo is just an added "Bonus" to my case of pots and the improvement of one doesn't mean the improvement of the other but that is my case. ALSO there are some theories that people get these calcium deposits when bedridden. I have spent MUCH of the last severeal years in a supine position and wondered if some of this was self induced but I didn't let myself get guilty over this as I push myself to be upright when I can. Let me know if you decide to try the exercises and if they help. Somebody else tried them for a few weeks and thought she noticed improvement.

I have BPPV..a type of vertigo due to little tiny calcium deposits inside my ear. My endocrinologist performed a little test in a visit a couple yeers ago. He had me lie on the exam table on my back, with my head over the side and a bit upside down, I think...I watched his finger as he moved it upward making my eyes track it, then he helped pull me up as I watched his finger and moved it some more. I had to stop due to SEVERE LIGHTEDNESS and VERTIGO. My doctor grinned and said yep, you've got 'rocks in your head'...referring to the calcium bits. I was so GREEN I had to lie down and he said i even had ...what is the word, astygamus (sp?) where your eye shimmy back and forth during this little test of his. All I know is I felt like I was on some disgusting amusement park ride...I could NEVER handle those either by the way. So he told me of some exercises to do. They made me feel MUCH WORST at first. I could only do a couple minutes a day and then worked up to 15 minutes a day and they helped a LOT. Good luck with this problem, it isn't fun. Also I am familiar with your sensation of feeling dizzy while lying down. I used to turn over in bed and the room would SPIN and I felt like I was on a boat and my bed was 'moving'. The exercises helpe with all this tremendously. I would ask your doctor about these types of exercises before doing them. At first they made me feel DIZZIER but that was due to training the ear to re-arrange the calcium deposits. Meds only helped the nausea but for "many of us' the exercises are the fix. Check with your doc. Best of luck. this site and the Brandt-Daroff exercises is what helped me. Even has animation to show how to do them properly http://www.tchain.com/otoneurology/disorders/bppv/bppv.html

Wareagle, What a BRILLIANT IDEA to make a clear bracelet to represent this "invisible illness"! Too bad you can't patent that idea.

The drug companies will brag their generics are "exactly the same as the brand name'. What they neglect to tell you is the binders and fillers can alter the way the drug gets into our system and like mentioned, sadly, some add different dyes that can cause allergic reactions. That said, some generics are better than others. Best just to try what you can afford and if problems, make sure doctor writes out DAW)Dispaense as Written) to make sure you get the brand name. Good luck.

Best of Luck, Becky. Can't wait to hear an update.

Thanks for a good update Ernie! Happy Trails.

Isn't it odd he went almost a year between some crashes??. AND he did INDEED have seizures when many are told "they DON'T have seizures when they faint." ..just 'seems' that way. I wish this show gave more details after the dx....Just to see how they are really doing but in his case, he had these dramatic, rare events.

Tonight at 9pm this same show is about somebody getting a PACEMAKER! for those of you with pacers.

According to their website, should be repeated on Nov.2 I think this is EST but check your local TV guides. Mystery Diagnosis DHC Nov 02 10:00pm Add to My Calendar Series/Other, 60 Mins. "Like Mother, Like Son" Episode A child has Celiac disease and an intolerance to gluten; a woman's seizures stop after her left frontal lobe is removed. Original Airdate: October 16, 2005. This mentions the celiac segment which was on with the MVP Syndrome and epilepsy show last night., Oct 28th. **Also alleged to be on Oct. 30th5pm** CHeck local times

Yes, INDEED it's a beginning. THANKS For posting about this and I am glad I scanned this page tonight. Both segments are proving to be very interesting..albeit lacking in detail but HEY, it's a start, like you said!! Yippee. I want to catch the repeat.

She has MVP SYNDROME!!! Gosh, I heard dysautonomia might be featured on this show but this was sooner than I expected and using MVP Syndrome instead so far!! Wow

Hmmm..not on TLC as of 11;20pm. Did yuu mean ESDT or another time zone? Or doesn't Discovery have some similar show like this? I will check the online guide. I am interested in such a show. **Edit ** It's Discovery Health Channel. I just looked online....I hope I didn't miss the segment but hopefully it will repeat. Interesting show...her Celiac improved with pregnancies. Doctors said her fatigue and dizzienss was stress..husband thought she was lazy. people told her 'how good she looked' until she wanted to puke. She has leg pain and can only stand a couple of minutes! Wow. Thanks for posting about this.

rachel, On the six syllable word, Dysautonomia, the MAIN accent is actually on the Fourth syllable...the "No" part. The last part kind of rhymes with 'ammonia' as far as it having a long O sound. I thought of ammonia because it STINKS, and so does this illness??!! Diss-au-toe-NO-mia if I were writing it in a flash card. Gosh, do they still use those things in this modern world? Hope this helps more than it confuses. P.S. Found this on dictionary online but the definition is depressing!? Ok the cut and paste pronounciation characters didn't work?! Emphasis is on 4th syllable. Function: noun : a disorder of the autonomic nervous system that causes disturbances in all or some autonomic functions and may result from the course of a disease (as diabetes) or from injury or poisoning; especially

Jeanne Was the 'bee sting' test by any chance an EMG study, for nerve conduction. I had one and while it wasn't bad, it wasn't real fun. But I was lucky. The pain was in an area that didn't have needles in it. The wonderful person getting me ready for the testing told me "some grown men have walked out in the middle of the study it's so painful".!!! I don't know if I appreciated her honesty or if she enjoyed my possible thinking "this test is gonna hurt &^%$#@!" I had neck pain we were checking --later showed bilateral carpal tunnell--but when they checked the ulnar nerve, my arm flew off the table and almost smacked the doctor!! He just kept right on doing the study. I might have laughed but at the time, it smarted. Now it would've been 'entertaining' had I actully tapped him!!! You will use up some endurance in two days of testing. Try to hyrdate yourself and stock up on salt or whatever seems to get you thru and stick some candy bars or granola bars in your purse!! And in the middle of some of the fierce testing, click your heels three times and say "There's no place like home". Glenda the good witch said Dorothy had the power to leave Oz the whole movie but didn't know it. Just wondered if that might work in real life but I am digress.

Wow this whole genetic thing IS complex as in Steph's case. So far nobody in my family has ANS (but I don't know any of my relatives outside my immediate family and the two I did know have died and had no children. That said, I DO know of a family where one has a HORRIBLE CASE of OI, and the family members "carry a similar gene". So hers 'appears' genetic, but only she is very ill with it and another family member has a milder case. All had been studied by docs who came to THEIR HOUSE to observe them in this very huge study. It led to the discovery of the NET defect (Norepinephrine transporter problem) where the body doesn't "clear out" the norepi levels. So, do we all have too much norepi, it doesn't clear out fast enough, or both??? And why do some family members carry the gene and are ill, and others are mildly affected or not at all? It's a good question and I doubt we will find the exact cause. Then again, 80% of people can tell you WHEN they started feeling ill...where others of us know we have always been 'wimpy' health wise. For instance, though healthy in my teen years, I had great difficulty lifting things. I had a horse and had no trouble putting on an English Hunt saddle...but lifting a heavy Western saddle wore me OUT! So little things like that....or have I just had poor stamina? In my case, I was born with it and it showed it's face no and then. I hope this doesn't confuse, more than it helps. Oh, and my mother who is 85 is much stronger in the upper body than I AM!!! It's so embarrassing.

Good luck jeanne. I have heard good words about Dr. Dan and his conservative approach to surgery. I know he tells many to wear collars and or try PT first. I don't know your exact situation. Hope you get some answers and if you get lots of testing, good luck enduring them! lol I know the testing to get answers is part of the journey but some more entertaining than others. Keep us posted. And let your imagination gallop you through any MRI's!!

Thank you, Ben. I am doing ok. I forgot to mention that taking notes is a MUST for me ...my notes used to be longer in the earlier years --wondering what the H*** was going on in my body. Now I know just to note the top 4 or 5 complaints. I would type out a list of my questions for me and make a copy for the doctor. That way, I could just sometimes let him read thru it (when it was long) and we could expedite our way thru the list. If I try to spit out each gripe verbally, I would tend to digress and ramble though my doc NEVER seemed rushed. but I just learned to be pithy with him as I learned more about my POTS. Then he and I could digress off my illness alltogether about something NON MEDICAL which can be fun, as well!! So dont be afraid of asking TOO MANY questions if this is new to you..or should I say the WORSENING Of symptoms is recent for you. You deserve to be educated so you can become more comfortable with the confounding symptoms of this ever complex disorder!! No easy feat in the early days if my swiss cheese brains remembers correctly. Keep us posted as to your outcome. Best of luck. And like I posted to Jeanne, let your imagination and deep breathing gallop you through any testing!

bb deezy I now see an endocrinolgoist. Before him I saw a compassionate CFS doc but he was NOT open to tilt table testing. I did a letter writing campaign as I knew I wanted to see either an endocrinologist or somebody willing to see me, while KNOWING ahead of time, my symptoms. I wrote a one page letter explaining my illnss in a nutshell and would a doctor take me on. It got a few letters of refusal and about 8 weeks later, finally got a "Yes" from my current doctor. One of the 'no's I got was a nice OBGYN who answered me himself (he knew my late brother in law) via him, I got the name of two good endo's. Oh, my dx was only CFS, FM and certified sleep disorders when I did my writing campaign. My endo sees diabetics who often have autonomic problems so this can be a good fit with some ANS pts. The bottom line is a doc WHO WANTS TO HELP and is willing to learn new things or NOT threatened by a pt that does his/her homework. AND has some familiarity with ANS and OI. Try this if you are desperate as it cannot hurt. Good luck.

I have only heard about Professor Mathias when he was on the NDRF conference tape from a few years ago. I have heard only good things about him from NDRF and from another site where some people in England and Scotland post. Plus, he is 'easy on the eyes!'. Not that that matters in a doctor, but on the tapes, he appeared handsome. Best of luck in getting some answers and help.

HI there, I certainly didn't mean to IMPLY YOU were violent, just stating a fact about out of control catecholamines. They can mess with our MOODS big time. Difference between angry outbursts and hitting. But it's the same trigger brainwise, temporary loss of impulse control at times...I've had these. Also, the TV SHOW HOUSE I think did a show about a violent inmate...and he had something...I thought it was a pheo but that was a few weeks ago. ANYWAY, many of uf have rotten moods that we are aware of and it stinks. Also congrats on your ablility to play Bagpipes!! That is no doubt making you feel crummy at times but not perpetually...unless you play daily? Because isn't playing a wind instrument kind of like a valsava maneuver? The latter used in dx ANS problems. Yes just dealing with POTS and meds and stuff is enough to affect our moods. I hope you get some answers soon. Good luck.

I don't know your age either ...it could be hormones. Or catecholamine surges...You even been check for a pheochromacytoma? (tumor of the adrenal gland) or done a 24 hour urine collection for testing? Sounds frustrating. "cat" surges are common in many of us and also in cases of domestic violence. Not to excuse all violence on hormonal pro problems with catecholamines, but I read about a study YEARS ago that tested some men with this problem. It's tough to deal with chronic illness but i have many days where my own moods bother me or depress me. Were you like this before the propranalol? I only take 10mg of that stuff as needed but BB's can cause mood problems for MANY people. Just wondered if that might be a connection. **edit** think link mentions moods may be affected by that medication!! And you are on a good sized dose, http://anxietyhelp.org/treatment/medication/inderal.html Hope you get some relief.

I don't know where you live but in SW Ohio I can get Grippo loop pretzels. I am too tired to go look at the bag but I believe one serving has 600 or 800mg sodium! Plus, many pretzels give me bellyaches (too much yeast or funky flour??) but there do not. PLUS, you can **** the salt off of them and throw the pretzel away. A big handful of these pretzels and a tall Gatorade has helped me perk up many a tim. Also, these salty pretzels go well with DARK CHOCOLATE like chocolate chips or dark dove chocolate pieces. My sister, who eats "VERY HEALTHY" 90 % of the time has lately eaten on one or two occassions, "Junk food" like chocolate, or a Fish sandwich and fries from fast food (SHE HATES fast food but gets "cravings") and it has HELPED HER! She is a massage therapist who is health conscious but we have both been thru a lot of stress this year. But when many claim 'diet has helped them', how is it the junk food can not only save the moment of feeling good, BUT give me the stamina to DO SOMETHING and either clean or leave the house? Yet other times salt and junkfood doesnt help. I know it's a tough questionb but i found it interesting. But I highly recommend these pretzels if you can find them. Good luck adding salt. It's best on the stomach to get in a food source. I wish I like pickles but can't tolerate vinegar. Good luck

Cheers back at you, Corina