smiles

Went to another specialist. Was told he knew more than others. He said I was 'special'. More complex than most and therefore needed special attention. He said he and his interns and fellows would research and get back to my cardio on their suggestions. The only suggestion he did offer was a feeding tube to prevent the swallow syncope (passing out or having convulsions when I eat). He said I'd obviously worked hard to eat healthy when I could eat. He was very impressed I hadn't lost any weight! Any one else been told this or have a feeding tube??? That was the last thing I'd expected to hear. Feeding tubes are easy to care for cuz I've dealt with them in others. How many of you have been thru surgery and can handle just going thru surgery???? What do you all think? Smiles wasn't smiling when she got to the car after the appt.

so sorry that you have so much loss in your family right now. That has got to be hard. don't feel alone in that drunk thing. My family has gotten to the point that it's no big deal when I talk or act drunk. I felt alone in my symptoms of the slow brain and speech, and then it gets slurred and then sometimes I can't get the whole word out. I really do act drunk they say. I was reading just yesterday about the vagal nerve which can affect many of us with dysautonomia. It controls speech too. I found that very interesting. I don't trust neuros. I've been to so many of them and none of the ones i've seen understand autonomic dysfuncion. My cardiologist has helped me more than anything. One neuro told me that I had shrinkage of my pons and cerebellum in my brain which caused the imbalance, lack of coordination and speech problems. My symptoms are not consistant though. I get better for a bit and then I can't function for a while. Another neuro told me later after another mri that my brain looked fine (they wouldn't consider comparing my previous 2 mris). Who know why anything autonomic misfires? Who knows if it's our brains or our nerves or our blood vessles or just the whole body flipping out. I've been dealing with this for almost 3 years. Each doc says something different. Hope I didn't discourage you. You are not alone though. Hang in there baby! Life will get better.

I was on O2 while in hospice care--3 months. It really helped me alot. They said that it made more of a difference in me than in most of their patients. My O2 level was fine but the O2 gave me more energy so I lasted longer. I didn't get as out of breath. I didn't tire as quickly. Then those 'other docs' who didn't have a clue what I had, said I didn't need it if my levels were fine. I'm not on it now cuz of new DX and new meds have helped me some. There are still days I think it would help.

Maxine, Eating can be challenging!!! My cardio thinks I have swallow (deglutition) syncope which is, in my case, almost passing out or having convulsions during or after eating or drinking. I suppose it is a worse form of what you?re talking about. I don't have all your symptoms though-- no pain, bulging veins, or abdominal bloating. I have to wear a thigh to chest compression girdle to prevent some of that blood pooling your talking about. Still not sure if it does any good though. I am seeing a specialist Thurs. to find the cause and hopefully treatment of this swallow syncope. I think it has something to do with how eating abnormally stimulates the vagal nerve and how that affects the heart and therefore circulation. I am waiting with great anticipation to see this new Dr. and learn more about my condition. His colleague has treated several people with this rare condition. Most Dr.s haven't even heard of it. I've had this for almost 3 years off and on. Enjoy cooking. I can't do it anymore. Enjoy everything that you can do without getting over tired. Getting over tired makes everything worse. Don't be hero. I tried for too long to do more than I really could cuz I wanted to prove to myself and everyone else that I could still function. It proved the opposite to my family and friends. They got tired of picking me up and carrying me. Hang in there. Much of it is trial and error. I document my episodes in a notebook so I can find patterns. It doesn't matter what I eat or drink. Mine is related more to hormone changes recently. I'm well into premenopause now. In the past it flared up during infection, activity (exertion) and during autonomic flare ups.

My cardio added salt tabs to help with worse symptoms during my periods and immediately after (I'm in premenopause). It helped so much that he increased it to during flare ups too. It's like a wonder drug for me! I take 2 in the am and 2 in the pm on bad days, with water or food. I can take up to 6 a day if necessary. Some days I don't take any. I need them every few days though to keep my levels up.

A beta blocker has helped me, besides everything else under the sun that they've recently tried.

I stumbled across this swallow syncope on the internet by sheer, 'I've got to help myself if the docs can't help me'. I have finally found a miracle Doc who really thinks I have this. He is sending me to a swallow syncope specialist (or at least has a keen interest in studying this phenomenon). I go to Mobile, AL in just a week and a half for testing (4 hours away). My cardio also put me on a heart event monitor. I keep having convulsions now when I eat. It is worse in the mornings! Don't know why that is. I sure hope they can help me. Thanks for all your inut guys!

I also have slowed and slurred speech. I do not have the feeling of a thick tongue. i just can't seem to get my brain to make the connection to my mouth and tongue to get the right thing out. My brain seems to slow sometimes too. Sometimes I struggle to find the right word. I am unable to tell I am having this problem till It gets real bad or someone tells me. It is very frustrating for me. I happens more when I am tired or sick or in a flare up. No fun usually. My kids do get a hoot out of it sometimes. I act like I'm drunk they say.

I also have convulsions and slurred speech. My slurred speech preceeds and is during an autonomic flare up. Convulsions are signs that something else is usually wrong with my body. I am having them now and looking for help. Salt tabs help. Fluids help. I don't know the cause of these yet. Sometimes the drs. can't figure it all out either. Mine start on the right side of my face and proceed from there. Very frustrating. These now are happening when I eat or drink. will call my Dr. in the a.m.

I rarely faint all the way. I usually can prevent it by laying down but am left with residual weakness lasting for hours or days. I have had NCS for 2 1/2 hr.

I think I may have this. it flares up when I'm at my worst, which I am again. Need answers. Need help. It is rare. My doc never heard of it. It has to do with the vagal nerve messing with your heart when you eat or drink. Not sure where to turn but to educate my docs.

Have recently read that twitching, spasms or convulsive activity can happen as a result of an autonomic flare up when you have ncs. i do. anyone else? if so how do you stop them? any suggestions? have had 3 EEGs and all appeared fine even when I convulsed on the table. It usually begins in my face. As my condition worsens so do the convulsions.

I also suffer many more flare ups a day before and during my period. It's gotten worse for me. I think I'm in menopause now and hope things will improve soon for me.

"Sleep is regulated by many chemicals...", "..change is believed to be stimulated by the hormone changes..."so says a book I'm reading about our brains. I have had varying sleep issues for 2 years. I am on 3 hormones and 3 chemicals or substances made by my brain or that my brain is supposed to tell my body to make. My body either doesn't make them or doesn't make enough of them. After starting on florinef I have had a harder time falling asleep again. I am curious what my Dr. will say when I go see her on Mon. This book also says "During our 'dead to the world' states, the pituitary gland delivers extra growth and repair hormones to the blood stream. I suppose it is a vicious cycle of not being able to sleep affecting our body's hormones and chemicals and then our chemicals and hormones affecting our sleep. don't know if this was helpful or not. I am still struggling myself at the moment. I was doing so much better for a while. Pots stinks! Yes it does affect our sleep. Medication isn't even me helping anymore.

I also had problems after exercising. I could not tell till I had already over done it. Then it was too late. prevention has been my best friend concerning exercising. I have to gradually work up to everything I do--much more slowly than the average 'gradual' most people would think of. Good luck with pacing yourself. i have struggled with that for 2 years.

My chiropractor helps me with my minor migraine symptoms and I feel like a good alignment can't hurt me. I have tried multiple vitamins, herbal and natural type remedies. I tried the colon cleanse herbs. I tried the blending spinich and carrots and fruits and and all that good food stuff for months. My family thought I was crazy. I was desperate to attain health and my life back. Nothing proved of significant imporvement for me. Medications have been my life savers (although it's taken 2 years of trial and error to find significant improvement). My body was missing certain things that my body should have been making but it wasn't. my life have impoved recently with new medication:florinef.

Shy Drager is degenerative and progressively gets worse over time. Give yourself time and see the specialist. They've ruled that one out for me luckily. Don't get to worried over it (easy to say, huh!), there are not many people who really have that one. My Dr. ruled that one out by me doing a blood pressure log for a month using 3 different positions and doing an MRI.

I am off balance a lot (but just glad I'm moving again). My right side is weaker, which I didn't realize till I started P.T. I tend to lean more to the right if I'm not paying attention to how I walk. I get tipsy like I'm drunk almost. Some of mine is the weakness on that side. Even though my difference in strength is extremely noticable during therapy it wasn't noticable to me till I started P.T.and they asked me to do things with one side and then the other. Have you looked into that. You could just do simple movements to check for yourself if one side is weaker than the other.

Believe me, you are not the only one! My symptoms come and go depending on how stable I am, how tired I am, how much I've done in that day. Noises I'm not used to are harder for me to process and therefore more difficult to handle. I am easily overwhelmed with things I haven't been exposed to in a while. I try to gradually work up to increasing new situations, sounds, sights, places.... I've just gotten out of the hospital after being there for 4 weeks. I'm in P.T. and they say that over stimulation feeling is normal for recovery after being so sick for so long. I think having autonomic problems keeps our bodies in a state of recovering so often that processing sights and sounds we're not as used to is difficult and therefore overwhelming at times.

Have they checked him for neurocardiogenic syncope. I was just diagnosed with it. They put me on a new med--florinef --and it is a wonder drug. It takes care of my slurred speech, near syncope while eating, sitting, talking, and standing. My hot and cold spells are regulated. my bladder is regulated. I don't have the constant thirst anymore. My swallowing is better. No more extreme shortness of breath that required O2. I still have right side weakness but am getting better more quickly than I have in 2 yrs. I only had some of his symptoms but sometimes it takes several diagnosis till you can get the right combo of meds or the the bottom of what is really going on. hang in there!

I have been on Effexor for 9 months and it has really helped me. I had to start on 1/2 of a 37.5 mg. After 2 weeks I went up to a whole 37.5 mg and had problems. Dr. put me back down to 1/3 of a 37.5 then to 1/2 then 3/4, then a whole. I stayed on that amount for months. I gradually increased it after having a relapse of symptomes and now I'm up to a whole 75 mg. It helps me. Give it a try at a lower dose if you are taking more of it. I got good at counting those little pellets in the capsules. Good luck!

This has happened multiple times to me. It really *****! it is such a helpless feeling. Now I have multiple diagnosis though and several meds. We take a list of diagnosis' and meds with us to the ER and get much better treatment when they know more what they are dealing with. I had no diagnosis before. I still get sent home but they make sure I'm more stable first.

Interesting! Thanks Y'all. I have seen a urologist and had the IVP an the cystoscope and all looked well. My family doctor and I fired my first urologist and am waiting on my appt. with my new uro. (old uro. told me there was no condition he knew of that you needed to drink alot of water for so I should drink less. He said it was impossible for me to have more output that intake. I guess I got him when I started recording and every day had more output than intake and several times a week I'd have 1700ccs more output than intake along with all my crazy symptoms.) They talked about intermitant neurogenic bladder cuz I lack the sensation sometimes that my bladder is full. I don't think I have symptoms of CFS. haven't really looked into that but I'm not just fatigued. It does seem like it often happens all in a few hours. Then it takes me all day to recuperate from all of my other symptoms.

Any one else have excessive amouts of urine output without the same amout of intake? I have it so bad that I have a catheter. I can't tell when my bladder is that full and that causes horrible problems (I won't go into detail now). I have other autonomic issues that don't fit neatly into a diagnosis box. They tested my pituitary gland and my problem doesn't appear to be hormonal from my pituitary. More probably it appears to be an autonomic dysregulation. Help! That doesn't sound very good.

Sudden fatigue, feeling like you're going to pass out, can't keep your eyes open, arms and legs get so heavy you can hardly move them, speech slows or garbles, thought process slows, can't figure out what is going on with your body. If that's what you're talking about, yea, I got it! My family sees it coming on way before I do. My speech usually is affected first. Not much any Dr. can do to help me. They all say I am a special case and don?t fit neatly into any box. I have many other problems too. They think my brain is degenerating and I have a degenerative autonomic disorder. Yippee for me! Wish I had something more encouraging to say besides I know exactly what you?re going thru.