Chrissy

I went to the wellness doctor last monday. I was scheduled for an hour, but it ended up being 2 hours and he asked if I could bring in my medical records for him to look at overnight. Then wanted me to come back the next day, but they were pretty booked and the doc wanted at least 45 minutes with me which the receptionist was surprised about. Then my "chauffeur" went back to work for a week, so I'm gonna go back on Wednesday. But he did a special computer test scanning the nerves down my spine and found I have compromises at my C-1 (head, face, pituitary gland), C-3 (thyroid gland), and C-5 (stomach) nerve endings. Then they did a special round of x-rays to look for subluxation (vertebre between spine and head doesn't move when you move your head, so it causes pressure on the spinal cord cutting off communication between brain and body.) When they explained this condition, my first thought was when I first got diagnosed with dysautonomia and they kept saying "simply its the miscommunication between the brain and body". Light Bulb! Second thought was for 4 years I've told every neuro and my PCP about this pressure at the base of my skull. We also discussed how many times I've been put under anesthesia or had an MRI/CT with contrast, he thinks there is too much radiation and chemicals still in my system from those tests. Little does he know I've also had an emptying study, swallowing study, and gallbladder test all done on the nuclear floor of the hospital. So we will need to do a cleanse. He also tested my adrenals by shining a flashlight in my eyes and when my pupils didn't constrict, he said my adrenals are compromised. Then when I told him how they dialate when under flourescents or when I over do things, he said that just confirmed his theory. He said there is a lot of stuff he already sees needs fixed, but we have to take it one step at a time and that it will take time. I will know more wednesday and have a game plan for treatment.

Yes that looks very familiar. Fortunately it hasn't spread to my legs yet, but every attack since September seems to get more violent and progress further through my body. Starting in my head with sniffing sound, then including my stomach up, now I feel like my lungs are seizing if that makes since. My last episode was 45 minutes on and off. Which I had to clarify to my wellness doctor if I said 45 or 4-5. He was really concerned. Fortunately my mom managed to record a major episode in the ER, but with a cellphone the quality is not too good. But the wellness guy was very intrigued and requested me to bring in all my medical records (since I had them already) and he's gonna review them with his team. He has a group of doctors with various specialties that sit down and discuss the complicated cases, he said it is alot like the tv show house. Ramakentesh did you ever get an answer from the doctors as to what it is or what might be causing it?

Tomorrow when I see the wellness people, I'm gonna inquire about full hormone testing. Because I'm thinking the tremors and cognitive issues, plus possibly the weight gain are related to low levels of dopamine. I found research linking low dopamine as a cause of Cushings. Then in May I'll have my labs redrawn by the surgeon at MD Anderson, which should show if my ACTH is high.

I was put on birth control and spiralactin for the high testosterone.

Julie, It took 4 1/2 years to get a positive cushings diagnosis. Everyone suspected it, but no one could get the labs to show anything. Finally I had a batch of borderline labs, so low most doctors wouldn't have acknowledged it, so they did an Mri and my pituitary gland was twice the size it should be. When they went in for the surgery, they didn't expect to find as much suspicious tissue as they did, and it all tested as tumorous. Alot of people have high labs, very little matter removed, and no positive tumorous test. Like I said I have a follow up at MD Anderson on May 9th or something. Allergy Tests were high positive for all but 5 things, no food allergies. I'm thinking hard about getting the allergy drops done cause insurance doesn't pay, but I can't have the shots due to beta blockers. I find the tremors are worse when I'm overstimulated (I compare it to what my autistic cousin goes through. Best way to describe it cause there are so many triggers.) But lack of sleep, a cold, asthma, or just run down/exhausted from pushing my limits too much tend to make the episodes more likely. I've actually been sleeping pretty good lately, weird schedule (fall asleep at 6am wake up at noon, tired til 6 pm then wired. My first thought was the cycles of highs and lows with cushings), but sleeping and the two days before this really horrible episode I felt like I was sleeping around the clock. My mom hinted that it wont be long before I will barely leave the house cause there is very little that sets me off at home all my over stimulation is outside the house. But at 23, I refuse to be afraid to leave the house. But I see her point that it has progressed rapidly in the past 5 months. I just wish I could find a neurologist who is willing to try to figure out what is wrong. Thanks for your input

The guy who diagnosed my cushings doesn't want to be bothered anymore and my local endocrine doesn't beleive I ever had cushings, so he only tests my testosterone and thyroid. I have a follow up with the surgeon May 9th and he is doing a mri and lab work. I will ask if his endocrine team he works with will take me on. I was diagnosed by Dr. Abdallah, the pediatric expert, he just did tests in his office then put me in the hospital for three days to do tests. My thoughts are low dopamine levels which I have read are linked to both cushings and dysautonomia. I have an appt with a wellness doctor on monday so we will see what his thoughts are.

I got my first round of chest pain that wouldn't go away in December '04, when I was 17, in February I developed migraines and neuropathy. I was sent for an indepth neuro work up that came back with no answers. My symptoms list was two pages long in such a short time with varied body parts (heart rate, bp, pain, dizziness, fatigue, short of breath, etc). My mom was scared I was dying or my body was shutting down. In March I passed out while home alone, which led to a cardiologist who immediately knew to order a tilt table. When the results came back autonomic dysfunction, he said he could treat the heart but had no clue about the rest of the symptoms. So we jumped on the internet and found Dyna, who suggested Dr. Abdallah in VA. I got in to see him in August and he diagnosed Pots and suggested Cushings Disease. He was astounded by my rapid progression and looked me straight in the eye and said "There is no cure, its either gonna stay the same or get much worse." I didn't believe him, I was gonna find a way to live a normal life around my bad days. I'm currently failing at that. When I returned home I found an endocrinologist to determine if I had cushings or another hormonal condition. I learned early that the ERs were not helpful unless you have obvious scary symptoms, so I learned to moniter new symptoms then consult the forum to see which doctor to see. I had a poor quality of life, but I was getting by for the most part. In January 2010 I finally got my Cushings diagnosis and in April I had pituitary surgery. In june after I passed the scab out of my nose from the surgery, I found out I had MRSA(staph)of the sinus treated with two rounds of oral antibiotics and some nose creams of some sort. In late July I was so insomniac (getting 1 hr a night for a week at a time, then 1day - a week of normal sleep). On Labor day I was on the verge of a nervous breakdown or just physically/mentally/emotionally exhausted. That is when I developed a "tic", head jerking to right with a sniff sound. Everyone thought it was the sleep depervation. I've done the sleep studies and sleeping pills. My sleep improved alittle, but the "tic" progressed into "convulsions" to 45-50 minute non stop movements last night. I have major congnitive issues(ADD?)and hypersentivity to sound, vibration, light, and sometimes touch (I relate this to my severely autistic cousin). I also recently got diagnosed with severe allergies and sinus infections, but due to the beta blockers I can't do the allergy shots and my insurance wont pay for the allergy drops. And my ENT is threatening that I may have to have sinus surgery in the summer. Things have gotten so complicated, its hard to keep track of new symptoms, stuff that is under control or cured(gastroparesis), and keeping a positive attitude and not get too wrapped up in the research or frustrating doctors. I'm currently looking into adding a natural team to my team, they deal with chiropractic, diet, minerals, and environment irritants. Right now I'm researching dopamine levels, mercury levels, c-1 spinal malfunction as causes of my current unexplained issues. I'll have more answers on those subjects on Monday. They had no idea what caused my symptoms, other than a case of Mono in 7th grade. Then they thought I had Lyme and that was the cause, but it has since been proven that was a misdiagnosis. Now I'm thinking mold or bad drinking water may be to blame. I live in Louisiana so it has a damp environment under best conditions. Though I've only drank bottled water since 2001, you never know what you come in contact with when eating out. My Pots doctor and my local cardiologist said that my pots would get worse if I let the doctors treat/cure the Cushings, they thought it was benefiting the symptoms. But if left untreated Cushings could have been lethal, and why have two rare/misunderstood conditions when there is treatment for one of them. I have just accummulated so many "mystery symptoms" lately and no one wants to advise me or help in any way. I've been to 3 neurologists, emailed my pots doc, and now I'm consulting a doctor that deals in natural treatment. My cardio symptoms are controlled, most days, but what about the other symptoms. I also have high testosterone. Thanks for any help.

I have a Pots doctor, who is on the "Dinet doctor list", but she only wants to deal with my heart and chronic fatigue symptoms. She mentioned at our last appt. last year that it may be time to go to Vanderbilt for more extensive research then rescheduled the appt I was supposed to have yesterday with her for a month from now. I have a consult with a "wellness doctor" on monday to see if a natural approach will help any of my unexplained symptoms. Since being told we needed to video the events, we haven't had a chance. Either more concerned with making sure I was safe or it didn't last long enough to get the cellphone ready to record. Then me, my mom, and my dad took various recordings last night and none of them were much to look at. Too close to face, shadows, no sound. It is so much more intense in person than any camera can record.

It is getting to be time to go back in for research. I need a place that understands dysautonomia and POTS, but also has knowledge into other issues that may be going on. I would like to know where people have gone. Where they got good service, bad service? What to expect from each hospital?

So after 5 months of progressive tremors/movement disorder and no doctor wants to get involved to help relieve my discomfort, last night I ended up in the ER. We think it was caused by over stimulation from going to a 1 hr wellness information meeting. Between the florescent lighting, crowded/ noisy environment, traffic outside, "strobe light" effect from the projector. I had a mild event while there, a second mild event at dinner. Then around 11:30 pm, while trying to go to sleep I began jerking, sniffing, and shivering. After 5 minutes of no releif I sat up, turned on my light, and video taped the event with my cellphone (the doctors requested videos of the events so they can see for themselves.) I then laid back down to relax again, but it was getting worse. I then went in to my parents room and they tried calming me down, holding me down during the bad episodes, and videoing with the cellphone. 20 minutes later we decided to go to the ER, because it didn't seem to be stopping. It would slow down for awhile, then get violent again. I had a major event in the ER and the nurse and doctor came in, they seemed freaked, but more concerned with slowing my breathing (they say hyperventalation, I say lung convulsions). They gave me a shot to calm me down, that was supposed to help in 20 minutes, I was still moving uncontrollably. They discharged me with PANIC ATTACKS, didn't even mention tremors. They didn't even try to control the movements and from all my research into panic attacks, it doesn't include violent movements. I guess as long as I'm breathing or conscience, I should avoid ERs.

I was on Reglan from January 2006 until this past August (4 weeks before the tic started). But I'm told if it is tardive dyskinesia, the symptoms would have started while on the medicine, not after I got off it. I also was put on an unsuccessful regimine of anti-depressants between 2006 and 2008. The more they changed my dose or the brand I took, the more depressive/anxious symptoms I developed. Once again the symptoms should have started on the meds, not when I got off them.

I had a rapid progression of symptoms the first 6 months - a year since my first symptoms in Dec. '04. But then things started slowing down I had time to adjust to my new symptoms before I was hit by more symptoms. I had good days and bad days and had adjusted my life around it. In fact the past 2 years I rarely had to go to the doctors other than 6 month/yearly follow ups. Then in January of last year I finally got diagnosed with Cushings Disease, that everyone suspected since 2005, the following April I had pituitary surgery removing tumorous matter shrinking the gland down by half. In June I developed MRSA (staph) in my sinuses from the surgery. I also developed severe overstimulation to all of my senses (smell, someone touching me, light, vibrations, and sound), it reminds me alot of what my severely autistic cousin deals with. They think it is due to vestibular imbalance. By August I was insomniac, lucky to get an hour sleep a night for weeks at a time before getting a few normal nights of sleep. Major change from the sleeping all day and night I could do before the surgery. When I went to see the guy who diagnosed me with Cushings I was on the verge of a nervous breakdown, physical/mental/emotional exhaustion. He blew me off and sent me home to get my gyn to put me on birth control, soon after found out I have high testosterone, possibly Polycystic Ovarian Syndrome. On the ride back from his office on the KY/OH border, 14 hrs away, I developed a "tic" (head jerking and a sniffing sound) which landed me in an ER. Conclusion exhaustion, sleeping pills. I emailed my pots specialist who said it did not sound related to dysautonomia. When I got home I went to two neurologists, neither wanting to address the issue, one is trying his best to find someone else to take me on. I have had two sleep studies, no apnea but I do have respiratory disturbances in my sleep. Use of bipap is my choice. The "tic" is progressing into what appears to be seizures (eeg came back normal), also muscle jerking on a whole side of my body at a time, rocking from the waist up, and head bobbing. It's become overwhelming. One theory is Tardive dyskinesia, but my neurologist can't find anyone who might have experience with such symptoms. In March I had my first lights and siren ride to the ER after I stopped myself from passing out, but then couldn't breathe. Conclussion was syncope made worse by an asthma attack. The following week I was experiencing severe discomfort anytime I went from a standing to a resting position, whether it was a short trip to the bathroom in the middle of the night or a long day of playing with my neices, when I'd lay down it felt like all the blood was rushing back to my heart, everything between my shoulders and my belly button hurt, ankles felt broken, shortness of breath followed by panting for 30 minutes after the other symptoms passed, head throbbing/pain, and nausea. I've felt that before but usually only when I push my limits too far. My local cardio says he thinks my hormones are really screwed up and I should get them tested, but he doesn't say which hormone he thinks is causing it. Then someone suggested that with the severe cognitive issues and my latest symptoms it sounded like low dopamine levels, which just happens to be linked to Cushings. But my local endocrinologist doesn't deal with dopamine and I'm not sure which doctor to suggest testing my levels to. Then to make things worse, my scheduled appointment with my POTS doctor got rescheduled from this coming Thursday to the middle of next month. She wanted to refer me to Vanderbilt anyway, getting too complicated. My family and I are talking if we prefer Vandy, Johns Hopkins, or Mayo to have further testing done. Right now the only thing controlled is my cardio symptoms and that really isn't controlled either. My bp swings high then low and so does my heart rate. It's not bad enough I have one complicated condition with little local medical knowledge, but two complicated conditions. And fixing the one may have made the other worse. Sorry kinda ranting. I just don't know what to do or where to turn. I do think it is time to go to one of the major research hospitals to get some answers. Does anyone else have similar symptoms or any input. I would appreciate any help. Thanks.

Has anyone experienced what feels like a slipped vertebre? I had my first experience when I was sliding out of a booth at a restaurant 2 years ago. I heard something pop, then severe pain between my shoulders, and dizziness. The pain lasted 2 weeks. I had x-rays done and was put on loratab and muscle relaxers. No relief it just had to work itself out. I've since had similar episodes sitting up while laying on the couch, lifting my arms over my head, and turning my head a certain way. Should I be concerned? Maybe its an air pocket releasing? But why does the pain last so long afterwards? Any advice is welcome.

What are the chances that both my parents and I have some form of dysautonomia? I know dysautonomia can be hereditary, but what are the chances I got sick first and have the worst case. Plus no one else on either side of the family has anything remotely close to dysautonomia symptoms. I got sick 6 years ago at 17 years old, my mom got diagnosed with mitral valve regurgitation 2 years ago, then last october my dad was diagnosed with neurocardiogenic syncope. Now we've been told that we were an extremely close family, but what would have caused all of us to get sick at the same time. Something in the environment(not sure what that would be), stress? I just don't get why I got this first and had such a rapid progression of symptoms. Has anyone had anything similar happen? What environmental causes are associated with dysautonomia?

From the very beginning, every doctor I saw suspected Cushings and ran the tests, they came back normal so they dropped the ball. I tried two local endocrinologists to figure out if not Cushings then what, but they just got themselves more confused and became butts. Then I was referred to Vanderbilt endocrine department, cause they would get to the bottom of it no matter what, wrong they were just like the guys at home. Ran a few tests then dropped the ball. Finally I found a doctor out of Ky who specialized in the difficult Cushings cases. He knew based off my symptoms that I had Cushings, he just had to prove it. He did a CT of the abdomin and a MRI of the head, then he ran loads of labs (blood, urine, saliva) over a 6 month period. On the follow up visit he said my MRI was abnormal and he was referring me to the best in Houston, TX. But there was a chance that we'd still have to remove the adrenal glands, because I went so long untreated. I had my surgery in April. They removed alot of tumorous tissue from my pituitary. They were excited because most patients have suspicious tissue removed and none of it turns out to be tumorous, but their symptoms go away. I had a majority of the tissue be tumorous, so they had high hopes for my recovery. On the 6 month follow up with the surgeon, he was disappointed that my symptoms seemed to have gotten worse and said that it is really possible I would need the adrenals out. When I had my follow up appt with the Cushings specialist, he ignored the continued worsening of symptoms and said the cortisol was borderline normal and that I needed to see my obgyn about birth control to regulate my periods and help balance my hormones. He'll do yearly visits to recheck my cortisol, but he was pretty much done. But my cardiologist said I need to see a local endocrinologist to really evaluate my hormones. All of my doctor knew fixing the Cushings would make my dysautonomia worse, but they had a gameplan to handle it.

Thanks for the replies. I know all dysautonomia patients have the same struggles. I just know from the very beginning my first dysautonomia doctor and the forums (dyna and dinet) always stressed how important a good medical team is. Well my team *****. I already had/have the best doctors in their departments on my local team and they aren't any help. In fact when I developed my "tic" and my neurologist at the time was so rude and uneducated, I asked my cardiologist who he would recommend and he said I should see the best in town. The sad part was I'd already seen that guy and when he couldn't figure out the migraines and "cure" dysautonomia by finding chiari malformation, he started doubting me and stopped listening to me. It just not as easy as it used to be to bounce from doctor to doctor looking for someone who understands, even just a little bit. Both of my parents have developed medical conditions of their own so our calender is pretty much full til the end of the year.

It will be 6 years in December since I first got sick, 5 1/2 since my diagnosis. I learned early on that you have to be your own advocate, because you are the only one who really understands/feels what's going on in your body. I have bounced all around from doctor to doctor over the years. Mostly because they get to a point where they don't know what to do with me and refuse to see me anymore, partly because I get tired of their attitudes and doubting me. I've probably seen every type specialist there is for one reason or another. When the doctors can't explain what's going on with me, I usually don't push the issue, thinking it must not be life threatening, and then I learn to deal with it. Just accept it as a new part of my life. I currently have a dysautonomia doctor (who wants to refer me to Vanderbilt cause I'm getting too complicated), a cushings specialist (who insists I'm cured even though my symptoms are much worse and my hormones are far from balanced), a local cardiologist (who has been a great help, listening to all my concerns and new symptoms and telling me what kind of doctor I need to see for what), a neurologist (actually I'm in between neuros), a GI doctor (also changing docs because the last guy said I became too complicated), obgyn (for women issues and to try to control my hormones by controling my irratic periods with birth control), ENT, an internist/pcp, and it was suggested I get a local endocrinologist. They all have a special diet they want me on and their own idea of how I should exercise and for how long. None of them communicate with each other, so I'm left to figure out who to listen to and how to manage my life (how far to push my limits, how to cope when I crash, etc). My internist/pcp, who I thought was supposed to help me figure out a plan of action, is very little help. When I see him, he asks about any new developments in my conditions, but never comments on any of them, then address the reason for the visit then sends me on my way. If it wasn't for this forum and the advice I find here, I don't know where I'd be. But even still I'm finding that its getting to a point where I can't manage all the issues myself, I've become too complicate. Most days I can barely think straight let alone try to understand medical issues. Am I alone is feeling like I have to figure this out for myself? I know all patients are different and I have two "rare" misunderstood conditions, but if the "professionals" give up so quickly, how is a 23 year old with a 10th grade education supposed to figure it out? Anyway I'm tired, with a migraine who is probably having her biannual nervous break down. Thanks anyway.

The past few days I have been feeling extra dizzy, light headed, disoriented, and confused with pain/pressure in my head mostly behind my eyes. Yesterday I felt really bad so I took my b/p, which was in normal range, then I took my blood sugar, something I rarely have to do, it was 69. So I ate a bowl of cereal, but that made me feel so much worse, when I retook my blood sugar later (giving the cereal time to work) it was up to 110. But I still felt horrible. Tonight I took my b/p (normal) and blood sugar (normal), but I feel awful. The problem is pin pointing the cause. It could be caused by the vestibular issues I recently got diagnosed with, but have not yet started treatment. Or the fact that after 6 weeks of being lucky to get 1-2 hours sleep a night, I am now dependent on sleeping pills and they only work half the time. Or maybe this "slipped disk" feeling in my back they no one seems to understand or think it is their department to treat. Every so often I'll hear and feel this crack in my back right between the shoulder blades on what feels like my spine, then I'll have a week or two of pain, which is usually accompanied by headaches and dizziness. Or the sinus infection I can't seem to get rid of. Or the "tic" I recently developed, that my last neurologist refused to address and I haven't been able to get in to see a new neuro. Or maybe like my cardiologist said, now that they "cured" my Cushings my dysautonomia is going to get worse. It would be one thing if I was having one or two of these issues at a time, but right now I'm experiencing all of them. My dysautonomia doctor is absolutely no help. I'm in between neuros. My internist/pcp is useless, I'm not even sure why I still see him. My cardiologist is the only one who seems sympathetic and is genuinely trying to help, but technically he can only treat my heart. I have consulted more doctors in the past 4 weeks than I did the first 6 months of getting dysautonomia, and I still feel like I'm alone to figure this out. I'm being very careful to avoid possible drug interactions, so I'm not taking anything for the pain while I'm taking sleeping pills and otc sinus meds. I'm so miserable right now.

Sorry. The "Men! Can They Coexist With Dysautonomia" was the topic of my rant about my man trouble. Then I realized I could add a poll. I'm still getting used to how to use this website. I know there are plenty of men with dysautonomia with the same relationship issues. I just know from my observation of friends and family, men don't handle illness well when it comes to people they love. Again sorry for appearing to make it gender specific.

It will be 6 years this December since I first noticed the dysautonomia decline that wrecked my world in less than 8 months. But I've managed to cope, deal with it, whatever you want to call it. My life was managable and getting back on track. Then I met a guy, don't get me wrong I've had boyfriends since I got sick but they usually didn't last long and ended badly. This one seemed different. He broke most of my "rules for men I'll date". The biggest were he was long distance and only a year older than me (I usually date 5 years older so they are mature and responsible, tired of serial dating and ready to look for a serious relationship.). But we hit it off immediately, talking about all our interests, morals, and future plans. He bonded well with my parents who are currently my sole support ( financial and emotionally). He said he didn't care if I have medical problems and he loved me just the way I am. But then I went 6 weeks with very little quality sleep, most nights I was lucky to get 1-3 hours a night. I'd developed a "tic" that eventually led to a trip to the ER and I was so weak and tired and emotional I thought I'd be admitted for exhaustion or a nervious break down. I tried one of my dad's lunesta pills, nothing. Then I tried Ambian, also no luck. So when I got home my doctor gave me samples of Ambian CR of various strengths and told me to work my way up until I found one that works. I'm currently on 12.5 mg and even that takes forever to kick in if at all. Meanwhile I was on a trip to see one of my doctors on the Ky/Oh border which is a 13 hour drive, with a 4 day stop in Lexington, Ky for a business event. I was over stimulated and a total wreck. By the time we got back from that trip, my boyfriend was at my house for 3 days off of work. I had a mild adrenaline rush, just because I was happy to see him, but I still wasn't sleeping and on a downward spiral in the physical health department. But we talked about him moving to Lafayette and getting a job here to be closer to me and get away from his current stressful job/life, even if that meant living with me and my parents until he could save for his own place. So I put what little energy I had into reorganizing my bedroom, bathroom, and the back office to give us space to be alone and to make room for his stuff. Needless to say when he came for his next days off, I was crashing HARD. He seemed supportive and loving, but I spent most of the day in the back room resting trying my best to fall asleep. So he went home early to beat the traffic and since I was "sleeping" anyway. Later that night he chatted with both me and my mom about different subjects, but told both of us that his mom irritated him because she said something mean after he told her that the reason he came home early was because I was ignoring him. The woman already hates me even though she's never met me, why tell her I was ignoring you? So we straightened that out and made sure he knew "crashing" was nothing against him it is just something that happens when I push my limits too far. So a few glorious weeks of blissful talking and together time and he's talking about when he gets a good job then we're gonna get married and have 3 babies. Which sounds nice I really love him, but I'm scared to rush into marriage until he knows all the secret nasty sides of this condition. Because I've read posts on this forum in the past of marriages ending, the husband taking the kids and the Potsey ends up back home with mom and dad. As for the kids, I'd love a big family, but I can barely handle my two young nieces visiting for a week. I'd be happy with one child. So then when he visits he sits on the couch where I usually lay and plays on his computer all day, while I'm organizing two rooms, doing chores around the house, and helping my mom with our home based business. Then when we cook dinner, which we only do when dad is in town (cause he works 7/7 for an offshore company) or we have company, he decides he doesn't like what we cooked and instead of grabbing some cereal, making a sandwich, or cooking something himself; we end up trying to figure out what he's gonna eat. Irritating, but he's a guy. No offense to any guys reading this. But this last trip he visited he got quiet and ended up leaving early. He finished lunch, picked up his stuff and headed for his car. So I got up and followed him out like I always do and he stood there looking at me not saying anything. So I gave him a hug and a kiss, then another hug and he got in his car and left. Not saying anything. I figured he was mad, but not sure why. He gets home and sends my mom an IM, but doesn't contact me. I was watching tv anyways so I figured if he wanted to talk he'd send me a message. But then I find out he's unloading all these complaints of stuff I did that was wrong to my mom and when I read what he was saying I had fire coming out of my ears I was so mad. He said I'm distant and don't sit and hold his hand the whole 3 days he's here. If he's gonna live here he's gonna have to get used to the fact that I have things I need to do and can't hold his hand while he's on the computer all day. He's so insecure and I can't put more stress in my life by making sure every move I make or everything I do is not gonna hurt his feelings. Part of me knows that relationships take work and that you have to adjust to each others habits and schedules. But the other part says he's gonna be more stress in my life that I really don't need. I could use some advice. Thanks Chrissy.

Hi. This is Chrissy's mom, Debby. We had a couple of very scary days! All of a sudden, our of nowhere, Chrissy started having head jerking movements accompanied by a loud sniff, sniff sound. If you ever saw the movie on Lifetime about the boy with Tourette Syndrome who went on to become a school teacher, it looked exactly like that (except instead of his vocal outbursts, hers was a sniffing sound). It kept getting worse and more frequent that we had to take her to the emergency room. We were actually out of town at the time. Ever since Chrissy had her pit surgery in April 2010, she hardly ever sleeps. She will go days without sleeping. I read the various posts about tremors and was wondering if that is the same thing as what I am describing. She has never had this happen before. Any feed back would be very much appreciated! She tried taking one of my husbands lunesta tablets one night and it did not help her sleep at all. I am sure going days without sleep is not good! Thank you for your time and comments! Debby

I recently got tested for vestibular issues and found out I have extremely weak vestibular in both ears. My doctor gave me a list of at home rehab exercises to do while I wait to see a rehab specialist, but it made me so sick that my doctor said I'd be wasting my time and money going to rehab. So now what? I guess I'll have to make a follow up with her. Thanks.

When I am in social situations where there is more than one conversation going on around me or too much movement, I become over whelmed. I get disoriented, dizzy, headache, unable to think. Just to name a few symptoms. It is hard to explain. This happens alot in restaurants. This weekend I was in one of these situations at a business meeting. After 5 minutes I got this look in my eyes and on my face, my mom said it was as if she was looking at my severely autistic cousin. Then I began to tear up and couldn't stop. Does anyone else get this? Is this a normal dysautonomia response? Which doctor's attention should I bring this to? How do you handle these situations? I appreciate any input. Thanks, Chrissy

I finally got diagnosed with Cushings disease and they came to the conclusion it was a pituitary tumor. So I went to MD Anderson and they removed it. They went up the nose and looked around for suspicious tissue. Unexpectedly they removed most of the insides of my pituitary. Kind of a empty shell now, I guess. I was in the hospital 5 days to be monitered for CSF leak and other complications. No complications, so that's a plus. But the day they were gonna discharge me, I was packing my stuff and next thing I know I was leaning against the wall sliding to the floor. I asked for a nurse to come take my vitals and like 6 people came running in. They locked me into my bed and called my neurosurgeon and sure enough I got an extra night stay. I had the worst nursing staff that night, which is actually the night I needed a good team the most. They were supposed to put me on the cardiac moniters, but never did. I was short of breath to the point of gasping between words, major fatigue, weak, and weird sensations in my chest. We went to sleep around 11 and not an hour later I woke up from heart palipatations and checked it on my heart rate watch. It was 180 bpm, so I called the nurse to come take my vitals. By the time they found a machine that worked, 6 minutes later, it was down to 165 bpm. They did a cardio work up, which came back normal, and put me on the cardio moniters until the next morning. Oxygen was dropping into the low 90s high 80s, heart rate was 130 bpm sleeping, and I was dillusional. It was like I was spaced out on drugs, which could have been the two new pain killers they gave me, but everyone denies drug reaction. They were totally unhelpful and uncompassionate. So we called my local cardiologist and asked if it was safe to drive the 4 hours home to be near him. He said yes, so we did. That was the longest 4 hours of my life. Major motion sickness and dillusions. I came home and spent the next 5 days confined to the couch with an escort to the bathroom. My oxygen was still like 92, but the rest was in normal range. I felt like nauseaus in my chest, if that makes sense. I also had palipatations to any and all noise, and chest pain. When I was finally able to stand, I noticed my blood pressure was going to high in a short amount of time, which was causing the near syncope. I'm doing much better now. I'm actually recovering alot faster than most patients who have pit surgery. Anyway just thought I'd put this out there.

I just got back from meeting with my new neurologist. It was great and she was very attentive. But she had to do all the preliminary testing. I had to walk heal to toe, walk on my heels, stand with my feet together and eyes closed, finger to nose, etc. Then she had to do all the tests for neuropathy. Vibrations and stuff. Anyway I was so dizzy and nauseated, heart pounding, headache/pressure, and my mind was zoning out/confused. This isn't the first time this has happened. Anytime some does my b/p or pulse, tempature, or exam of any sort I get a variation of these symptoms. The longer the appointment/tests the worse the symptoms. Does this happen to anyone else?