Dizzy Dame

DSM, That's funny that you mention your husband having a lower sex drive. My boyfriend now has never been a typical "horny male". Even when we were first dating, he never wanted to make love more than once a week. I think he could function happily on only once-a-month (although after six months of illness, even HE's getting restless). I should have him see a doctor. If his testosterone is messed up, it may need to be addressed. (Although I may eat those words later if he suddenly becomes an animal...he he). I'm really glad I posted on this. I feel so much better knowing I'm in the same boat with you guys. (although I wish it didn't have to be this way for any of us) - Lauren

Linda: That is awful! Just because you're sick doesn't mean that you're any less of a person! That really t-d me to hear your man's been saying that stuff to you. Melly: I'm sorry to hear things have been rough between you and your husband. Hopefully it will get better. Emily: You're such a kind and well-spoken person, I'm sure you'll meet someone.

Thanks Morgan, My boyfriend has been really understanding so far. I just worry I guess. This may sound wierd, but I think it's affected me more than him. He's a DJ and a large night club in Honolulu, and I get so insecure knowing he's out surrounded all of those beautiful girls at the club and I'm at home drinking gatorade and obsessively taking my bp. (gosh, it sounds even more pathetic on paper ) I know I can trust him, I just feel sooooo inadequate sometimes, and that's made me sort of insecure. It's good to know I'm not alone in this though. Thanks again, Lauren

OMG, I totally know how you feel! I'd be soooooo excited to get an abnormal result (well... as long as it was something treatable and curable). Awhile ago, they thought I had insipid diabetes and I almost cried when the results came back normal

Hey there, When I first fell ill my endocrinologist tested all of my adrenal functions. He talked to me about cortisol levels and Addison's disease. My levels turned out to be normal (much to everyone's astonishment) but I learned alot about adrenal insufficiency in the process. Do you have a good endocrinologist? If not I suggest you get one. Also, have you had a CT scan of your abdomen? - Lauren

Hi guys, First I wanted to say that I'm sort of embarrassed posting this topic, but I've also been too shy to ask my doctors and I NEED answers. I was wondering if intimacy is possible for any of you? I haven't been able to be intimate with my boyfriend since I fell ill... and it's really starting to wear on the relationship. Any advice? slightly embarrassed, Lauren

Wow Persephone! I'm glad they've found out what's happening to you, but man, that sounds rough. I'm astounded you're able to stand as well. You really need to write a book when you graduate Oxford about how you survived grad school with your condition...that or someone should give you a medal!! Hopefully the Flourineff should work. I really hope things start getting better for you. Cheers, Lauren

Thanks for posting this. This explains why I sometimes feel dizzy even when my bp is "normal". I'm going to show this to my family and doc's. Lauren

Good stuff. I think all of us who are interested/able should apply to the show, that way the producers may pick one of us I can't apply since even though I have my diagnosis, I'm actually sicker than when I started presenting sympotms. My story probably isn't "uplifting" enough to get on the show, but I'm sure someone here has a "tv friendly" story.

Hey Morgan!!! I'm glad you're back. I'm also so sorry you're back to square one, but at least you're going to find out the REAL cause for your paralysis. I hope you get an answer soon! -lauren

Thanks for the info Mary, much appreciated - Lauren

Beautiful post Emily. And I feel like every little bit we do is a step in the right direction. Certian sayings come to mind like "a journey of a thousand miles begins with one step". Cheers, Lauren

Hey lucky, What an arse! I became furious just reading your post, I can't imagine how it must have felt to talk to that idiot. Well, don't let it get you down. He's not a good doctor and that's that. Hope you're feeling a little better.... - lauren

Hi all, I just had the most WONDERFUL doctor's visit of my life. I went to see the doctor who'se wife had dysautonomia. It turns out he's not a neurologist, but he's an internist and he works loosely with the people at Vandy. He's also a friend of Dr. Grubb's. He went over my file and answered ALL of my questions, even the wierd ones He also says he's treated over 30 cases of POTS, and (for those of you wondering about recovery rates, he says that 80% of the patients he's seen have gotten better within 10 years of onset of symptoms). I'm not saying that's true for all POTS cases, that's just what he told me he's seen. So... For those of you who live in the Atlanta area who aren't satisfied with the treatment you're getting, you should check out Dr. Stephen Berry at the Longstreet Clinic in Gainsville, GA. There is a website you can go to www.longstreetclinic.com. On another note, Dr. Berry's going to be sending me to Vandy within the next three weeks. They're setting up the appointment now. Are any of you going to be there around that time? We should get together for Gatorade . - Lauren

Hey linda, I've never gotten scalp pain. But I wanted to give you a (((((HUG))))). I know you've been going through some crazy symptoms lately and I hope you start seeing a light a the end of your tunnel (and that it's not a train! ) I really hope you're feeling better today. And that those doc's of yours start giving you some answers Feel better, Lauren

I do think that all of us who are interested/able should try to find a way to get the word out about POTS. This illness is too common (compared to other, well known illnesses like Lou Gehrig's disease or tourettes) and too disabling to be unknown. Has anyone tried to write their senators? Does anyone on the site know someone in television/news/journalism?

Sorry you had such a rough time! . I hope you can talk to your doc. soon about your new symptoms. They sound pretty rough. Hope you start feeling better, Lauren

Persephone, I'm so sorry things have been poopey for you. Keep your chin up! Have you tried calling people you know? I'm here in Georgia from Hawaii and don't know anyone, so when I get lonely I call people. I know that doesn't substitute a hug from a friend, but it may help you get through this rough patch. And just think: You're at Oxford, one of, if not THE most famous school in the world. You had to fight to get where you are, and you're probably going to have to keep fighting to get where you need to be. I just know you're going to beat this and come out on top. I'm sending a cyber-hug your way. You can email me any time if you need to talk. Hugs, Lauren

Oooooh, neurontin. I was on that for a year for my fibro... it may not happen to you, but the drug can cause hypotension and exacerbate any existing hypotension, so keep an eye on your bloodpressure. Also, the nerurontin made me soooooooooooo sleepy, I couldn't drive, or even walk a straight line when I took it. I hope it goes better for you. You cracked me up with your earlier post "ookeeepookeedokeylokey syndrome" (LOL)

Hey there, I haven't had your exact symptoms, but I have had stomach problems as well. The doc's found out I have a peptic ulcer. Have you seen a gastro about this?

Oh, OC, I meant to ask how your jaw is doing. Any improvement?

Great Idea!!! I'm on it I sent the following message. If any of you want to steal it as a template: be my guest. To whom this may concern, I have been diagnosed with Orthostatic Intolerance (OI). This is a disorder of the autonomic nervous system that prevents me from standing, or even from sitting for long periods. The symptoms include tachycardia (fast heart beat), hypotension (low blood pressure) and dizziness when upright. This condition has affected all aspects of my life. I am unable to attend school full time, unable to work, and sometimes unable to get out of bed for days. There are many people who suffer from this disorder (almost 500,000) yet it remains unknown. By accepting me to appear on your show, you would allow this disease the exposure it deserves, and would help to dispel any myths associated with it (such as it is precipitated by anxiety, or it is a result of laziness). Please allow me the opportunity to educate people about this debilitating condition. Sincerely, Lauren Mitchell

Hey linda, Good to hear the ball is finally rolling . Let us know how things pan out, mkay? Hugs, Lauren

Hey there Dana, I always feel my best in the morning. My worst time is in the evening from about 7pm-12 am. I can say that there is nothing "normal" about POTS: everyone has variations of the theme "tachy when standing". But, alot of us have similar symptoms doing certain activities (like hot showers for instance). By the way, welcome to the fourm! (where are my manners?). I hope you find lots of friends and support here - lauren

Hey there, That happened to me once. But my hr did go up shortly after (I think there was some kind of lag effect on my heart that day). Don't know what else to tell you, I never found out why my heart was doing that... Oh the quirkiness of POTS! - Lauren