lissy

Cat Lady I'll look more into that I have some other symptoms of EDS I believe... Thanks again Lissy

I have noticed loose skin since the POTS symptoms became more severe does anyone know of a link or other condition that goes hand and hand with dysautonomia??? Lissy

Thanks ladies well I gotta take it....can't chance another pregnancy had PPCM last time and was told another preg. could kill me. Lissy

Hello all, I have a serious question haven't been here for awhile... has anyone ever taken plan B ? and do you know is it pretty safe? Thanks ahead of time Lissy

I have been concerned about my weight for the past 2 years and with my appetite never being the greatest I thought about trying a weight gainer has anyone tried any and have had good results? Lissy

Hi. Sorry about your heavy heart and I understand. Which I also hold, as I sit here alone while my kids are napping it brings tears to my eyes to make all this pain a reality. There is so much pain inside myself and This Holiday brings it to a boiling point... I miss me my confidence, my self esteem, the normalcy of life. I struggle with this illness day to day and it takes everything I have then throw in a possible cheating spouse and 2 young children to take care of 24/7 with never a moments break, no friends or family for support. I wonder all the time how can this happen to ONE person I stay numb most of the time or it would drive me insane. Holidays no longer feel like anything anymore. I look forward to my kids opening gifts but its hard for me to just fake happiness. I would call this deep depression but not from a chemical imbalance from a life imbalance. It hurts to feel so alone and it hurts to love someone that didn't love you. You are not alone and sorry to throw in my own problems Lissy LOL I almost forgot Merry Xmas Everyone

The only time I get EXTRA dizziness I usually am fighting a virus, or close to that time of the month... Lissy

LOL mine also!!!! Every night he gets home from work and eats, I start off looking at him crazy and very annoyed and say things like you are eating like an animal or why did You choose that LOUD cereal !!! I remember as a child telling my mother and brother to stop slurping their spagetti noodles or my parents sipping their coffee, I would end up going to my room to eat because I couldn't stand it. LOL even the dog lapping out of the water dich would make me soooooo angry. I never knew what this problem was or even if it was a problem. Lissy

I have had this problem since I was like 10...I thought it was just "ME" Please read: From Wikipedia, the free encyclopedia Jump to: navigation, search Misophonia (often mistaken for Hyperacusis), literally ?hatred of sound? is a form of decreased sound tolerance. It is believed to result from abnormally strong connections between the autonomic and limbic systems in the brain, rather than over-activity in the auditory system itself. The term was coined by American neuroscientists Pawel Jastreboff and Margaret Jastreboff. [1] Unlike hyperacusis, misophonia is specific for certain sounds. Little is known about the anatomical location of the physiological abnormality that causes such symptoms but it is most likely high central nervous system structures.[2] Symptoms People who have Misophonia are annoyed or, even enraged, by the sound of other people eating. Oddly they are not annoyed or enraged by the sound that they make themselves while eating.[3]. Often are people who have misophonia also annoyed by certain movements that other people make, like tapping with their leg, nail biting or other tics[4]. But no direct relation, between these sources of annoyance by people who 'suffer' from misophonia, has ever been researched, thus not found. Typing on a keyboard and drinking water are often also listed as "annoying" by people who suffer from misophonia.

A patent foramen ovale and your welcome. hope you get the right answers and I would also demand the head scan just for your own safety and u can get that done right at the ER and just tell the doctor your worried and you are holding them responsible if they refuse to do it. The PFO you'd see your cardiologist and see if they could do the testing for that or have to refer you to a Congenital heart specialist. Lissy

PERSEPHONE. Sorry to hear of all your constant pain. Have you had your heart checked throughly there is a condition PFO I believe its called that cause severe migraines like your speaking of, and that might go along with the EDS might be something worth checking into. Online for the PFO does not speak of all the symptoms but I remember seeing a story of a lady on Televison having disabling migraines that would last for weeks sometimes months .... Best Wishes Lissy

Thank You all so much for not thinking this is just something I can snap out of ...Thats how everyone really talks to me just get over it and take your meds. I have had a these weird feelings everytime I take anything and it worries me because I never know if I am just showing sensitivity or having a reaction. I was DX way before POTS with GAD but all my symptoms back then are basically the same as they are now with POTS with the sensitivity to Meds, lighting, loud noises,crowds, environmental chemicals,. I have a hard time trusting Doctors and believing they care about the safest way of treatment I think the long process of going to so many Doctors to get them to believe I had this POTS made me distrust them even more and I had to request testing throughout the whole process of elimination, which made me lose faith in the medical system. When I was my sickest with this POTS and cardimyopathy????? no doctor knew I was as sick as I was and they tried saying I had depression or it was all in my head.Up until I demanded a ECHO and they said EF was 45% but it resolved and I was left with the POTS which 19/20 doctors didn't believe I was even sick. And they don't believe that Medication give me these reactions either. ****Get a doctor I'm more comfortable with that takes me serious thats on my check list! Its a great suggestion for for to see a specialist for this issue. Its a great suggestion to have husband read the leaflet instead of myself. And making a list of Meds with reactions is also a good idea I never remember.... OK. the culture for UTI and B.V were positive some of the UTI symptoms have improved on their own which I know infection is still there I don't really think a UTI can totally clear up on its own ( I wish it could:)) The meds they said would work are : Cipro, Bactrim, (macrobid for the UTI Macro bid is something I can not take have had serious reaction to).Those are the meds they tested against the bacteria that I have. For the B.V which I have had for a long time they said to take:Flagyl I have been told I can take half the dose for half the time with both meds. Now I guess I have to just work up this courage and have benidryal on hand in case I shall overcome this fear because I know my body needs help getting rid of these infections. And maybe this is just Gods way to make me get over this fear of meds because I'm going to Cleveland in 2 weeks and from the tests they will know what kind of meds I will try to get my POTS more under control and who know maybe I'll be one of the lucky ones that meds will give me my life back. That will be a interesting testimonial Thank You all so much for your support and I will take these Meds today ( Taking almost 250 cipro and 250 flagyl) Lissy You all have a Merry Xmas and Happy New Year and Let this be the Year we Overcome that obstacle that affects our life that we can take control over.

Hey all, I have a serious problem I am afraid of taking meds and I tend to read everything about the medication online and find stories of other people having bad reactions. I have had this fear for years and I have been lucky enough not to have many health problems that require medication. But I do now, I have a UTI and B.V together and I know the UTI can become serious if left untreated but I can't bring myself to overcome this FEAR . Everytime I have taken meds antibiotics or anything I have full body tremors tachycardia while laying down shortness of breath and I had had a hot red patch on my face??? I took Vitamin D one pill 50,000 units it made my tongue numb and also my foot. I always have these crazy effects and when I tell the pharmacists or the Doc they say thats not normal and keep taking it it will go away. They blow me off. But I never complete any meds after the 1st dose or 2 because these symptoms scare the death out of me. Every single time I take meds I have those symptoms Is this pretty common with dysautonomia or POTS and if so what can I do???? I have called the doc and urgent care for the past week trying to get them to prescribe THE SAFEST MEDS and they think I'm crazy...I have thought I was just having anxiety attacks but I lay down relax and about 45 minutes after taking anything my body just does its own thing like it fights to get the chemicals out. Anyone PLEASE HELP I don't know what to do. I have 2 infections and I know I've had one for over a year could it cause my POTS symptoms to be worse than normally would be if so...this could be why I feel so awful. Lissy -----miserable

I have noticed I just have NO APPETITE really ever I could go days without eating I just really do it because I know its necessary to live. Its been that way for a few years. I only have nausea if I wait to long to eat which is often... I have no idea what happen to my appetite????neither does the docs. Lissy

Hi, I only can tell from my mottled appeareance....Every time I'm sitting or standing my arms and legs become splotchy and they are cold if someone else touched them but I don't notice it. I will have blood pooling appearance until I lay back down and warm up and I appear normal toned again. its not just in my hands and feet its my whole arm and whole leg and sometimes spreads to abdomen if upright long enough, really only have never noticed it on chest area.In Regards to the Flow of POTS from what I read I may be considered LOW or High unsure right now I have my testing in January . Lissy

Well Doc did exactly what I thought she said I have to take Cipro......And I told the nurse I just don't want to take chances to make my condition any worse!!! and they also didn't know what type of bacteria is to blame anyway not until 2morrow , so how would they know anyway that the Z-pack wouldn't work I get so upset when your own doctor don't understand how our bodies don't react normally . I don't know what to do , my husband just says take it but he doesn't take my sensitivity serious either and he needs to drive me to another place to get a different antibotic...why can't anything just be simple. Lissy And Potsgirl it will get better I was at a very low period for over a year was improving for about 5 months then down again...Keep your head up and stay positive because that makes a difference on healing:)

Hi. I have Random ringing sometimes, muffled sometimes, pain in ears from bathing sometimes....It all goes away within hours sometimes I have to just go to sleep and wake up and its gone. I don't know what it is but it drives me crazy too!!!Glad I can hear though:) It happened in the doc office once and it was ringing so loud I couldn't even think and that eventually caused panic and by time doc came in its was gone (15 minutes) Lissy

I have filled 3 scripts for them and had them fitted, But they still are toooo tight I can't stand the feeling. Ive tried closed toe open toe, thigh high waist high, and I really don't think a normal fitter at a medical store is qualified enough to handle this possible treatment route. I think our specialist should handle the fitting and actually see the benefit on a test of some sort. I just hate how they feel I can't keep them on for more than an hour.... and also they all don't have to be totally ugly I had a choice of colors, lace or not kinda just like some really thick tight pantyhose. *I should also add I get more Tachy also Lissy

Hi, Curious if u had any negative effects from that shot have been considering it... as for weight gain I can use that only 100lbs Thanks Lissy

Hi, I heard that is a really good pill, as long as you have no blood timing problems...which I did so I am still on my period stopping search, Good for you:) Lissy

Thanks Potsgirl, how have u been doing??? Thanks for always responding:) I know the cillins are the safest but allergic:( She hasn't called back yet either she might just blow me off then I gave to go to urgent care just for a new antibiotic!!!! Even with the Z-pack I still get side-effects but they're not severe ya know. Theres no way is H E double L I'm gonna add more possible permanent problems just taking a Med.. Lissy

Hey all, I always dread getting an infection because on top of the infection I have to deal with the med sensitivity. I'm use to taking the Z-pack but doc called in Cipro and from everything I read I told myself NO WAY shall I take that!!!!! and its huge!!!!!!! I called doc trying to get something else and hopefully she will...she kind of has an issue with SHES THE DOC and I am just a patient.... The question to you all is whenever I read the leaflets i always see about Central nervous system disorders :::::Do we fall into that category???? I always get the craziest side-effects Tingling/Tachy/Flushing feeling faint even when laying down... What has been the safest antibiotics with the least side-effects for all???? And I do know everyone has different allergies. Lissy

Glad to hear about your upcoming appointment:) Hope it goes very well....As for the records hmmmm I got mine for free at the hospitals that performed the tests but there was something on the wall about there being a charge of $ 15.00 for 10 pages and so much after, but I wasn't charged???? They also gave me DVD copies of echo's and everything, make sure u get not just the doctors interpretation get the actual test results and reports. Goodluck Lissy

Hey, I was just wondering, I also have electrical monitor and have had errors...Are they even equipit to read while standing???correctly. My monitors instruction sheet says sitting with wrist at heart level so when your standing anyway are u just holding your arm down??? or at chest level and if so is it actually accurate anyway? Lissy

Hi, I was DX with MVP 8 years ago and it was actually a clicking in my valve with mild leakage....at that time Dysauto symptoms weren't really apparent while standing so that cardio didn't check for tachy while standing but it could have been all along. LOL I guess we are saying the same thing:P Lissy