Dizzysillyak

I was knocked out for my last 2 scopes and didn't have any problems. But, the first two scopes I had were nightmares. The doc didn't knock me out good enough, so I kept waking up and I felt the tubes both ways. These were both very painful. I had fibromyalgia 24/7 at the time of the first one tho so my pain receptors were already alert. I haven't had any procedures since having a two hour seizure in march so I don't know what to expect. A fasting blood draw triggered pre seizure activity last month ... I'm assuming they'll just give me klonopin, etc prior to avoid a seizure. Tc .. D

Thanks for posting about the norovirus. I need to look this up again. I live near a cruise line port and at one point noroviruses were a common problem. We typically see cruise ship employees and tourists in groups at the mall and walmart ...

It's probably going to take you a few days to get back to normal. If you did pass a stone, your body just went thru a major effort to get that stone out of you. And then the meds will take awhile to leave your body too. I'm usually out of it for a day or two after passing a stone depending on how high my white blood cell count got. Tons of plain water And rest will help ... Tc .. D

I'm not sure if this will help, but I crashed in sept due to an h pylori infection. Your daughters symptoms are very similiar to what happened to me. I don't know if other bacteria can cause this but your doctor will know. It's interesting that her color is off too. Mine did that for 16 years while I was eating gluten, but not since I stopped. If you try this, be sure to Go slowly eliminating gluten. She may feel better by drinking some room temperature lemon water. A full glass with 1/4 of a lemon works for me. This will help her stomach and her liver. Over the weekend you may want to consider feeding her bland meats and cooked veggies to see if it helps. Hope she feels better soon. .. D Ps. I'd slowly wean her off all caffeine too. It's known to make our hearts race.

My only eeg back in the 90's was normal too. From what I was told an eeg only picks up seizures if you're having one during the test. I never thought about getting one for my petite mals. For some reason, I thought it would only pick up the bigger seizures .. Just to be clear, well as clear as I can be .. Lol .. I was a total wreck when I was eating gluten all the time. I felt like the floor was moving in waves when I stood up. I fell over easily. My vision was distorted 24/7. I had narcolepsy and would drift off to sleep. Etc etc .. But, I still have some symptoms when upright. I get petite mals if my blood glucose goes too low or I'm upright for too long. I just know why I get them now and can control this better. I still have to lay down to increase blood flow .. My recovery is unique to me tho. No one knows exactly who will benefit from a gfcf dietor what can be reversed via diet. Dr wahls' story is very inspirational as are all the stories about autistic kids. I hope this is clearer .. My head hurts .. Lol .. Tc .. D

I've done this for as long as I can remember. As a kid, I would space out and remember my mother talking to me to get me out of it. I learned to fake listen to her because I'd get in trouble if I didn't respond. Lucky for me, she never caught on .. Lol .. I learned a few years ago that this is very common in autistic kids and these were called petite mals. In addition to this, I had trouble feeling like I was disconnected from my environment. Another autistic trait. The gfcf diet has eliminated this problem most of the time for me and many autistic kids. Jenny Mc Carthy has a quote in her first book where her son, evan, talks about being shy but now he's not. He was 5 when he said this .. I still have petite mals regularly upon standing, but I recover much faster. Knowing what these are reduced my anxiety while these are happening. Eating every few hours helps too. It's the disconnected feeling that totally disappeared .. I'm more in touch with facial clues now too. Tc .. D

I've used those disposable hand warmers when I was up north. Walmart and target carry these. I put one of these in every pocket .. At home, I have a heated throw (sunbeam) for the sofa and an electric blanket for my bed. Warm soups and drinks help too tho. If all else fails, a hot bath brings my body temp back up.

This looks interesting. Thanks. I was reading up on threonate and it said it was an enzyme that allowed the magnesium to cross the bbb. Do you know what else might help magnesium cross the bbb ?

That's a great idea. I've seen dr oz talk about cfs but I don't think he included pots or dysautonomia and to me, this is what makes my life so challenging. I'd want to make sure he understood people with other illnesses can have this too. Lymies get this .. Hopefully someone here will know how to go about this .. Tc .. D

I've had three stones that I know of. I'm assuming since you think you passed it, there wasn't any reason to run further tests. The xray and cat scans are only needed to find it and see how big it is. Just to be safe, I'd drink some cranberry juice (the undiluted one but be sure to dilute it) and tons of water for a couple of days. There are other remedies on the web too but this works for me. You may not need the vicodan anymore either. Once mine are out of me, the pain stops. You'll want this on hand in case there's another one. You may want to look at the low oxalate diet too. I use a small hand held strainer to catch stones if i feel like I'm passing one.

That's interesting that you connected your gastroparesis to bad bacteria too. I wonder how often this happens. My digestion is still slow from the antibiotic treatment but I'm still working on rebuilding my gut ecology. I've only been off these for a few days. Fortunately, the natural calm is working great for this so I won't need any meds. Kow .. I can't remember the name of the med my gastroenterogist gave me for this. All I remember was that the muscle spasms were worse than the gastroparesis. Tc .. D Ps. Are you gluten free ? There's a connection to dystonia in some people.

I've had similiar problems .. Do you have this in writing ? Do you have your diagnosis in writing from your cardiologist ? A copy of your ttt results ? It could be that your social worker is confused. If not tho and you're being treated unfairly, imho, your best option is to see a specialist. I had a gp once who told me he would get fired if he signed me out on disability anymore. He insisted that I go see a specialist. It worked too. My specialist took care of this for me ... Tc .. D

I've been thru all this too. For the most part, the er docs I saw were more compassionate and intelligent than my regular doctors. My regular doctors viewed me as a nuisance because I couldn't take the drugs they prescribed without serious side effects. I see an integrative doctor who understands how our systems interact, including nutrition, but she's still stumped by my dysautonomia. The upside is that she's very interested in anything I learn that may help us resolve this piece of the puzzle. And surprises me with what she's learned recently. She is working to get to the bottom of this. But she still has an office to run and many other patients who's doctors didn't help them either so I understand how busy she is. Dr mark hyman wrote an article about the new era of medicine, so this will be the norm someday. Tc .. D

Great advice everyone .. I sure wish you all had been here when my dd was dealing all of this. I just wanted to add that we need to be careful what our therapists are telling others in our lives. Mine ragged on me in front of my dd for not socializing more. Typical psych problem solving strategy. Despite appearing to understand my illness, she simply had no idea that it was all I could do to raise my dd. Tc.. . D

Natural calm, magnesium citrate, in warm water works everytime for me .. I just discovered how well this works after getting h pylori. H pylori caused gastroparesis this time but celiac disease caused it one other time. A good probiotic or kefir or yogurt may help too. Fresh fermented cabbage would too. I tried the meds for this but they made my stomach spasm so much that I had to stop them. I was taking 1/4 tsp prior to each meal when this was at it's worse. I needed the water to be as warm as I could stand it too. Now I only take this at night. This can cause diarhea so watch for that and reduce your dose as needed. Tc ..d

Great find rama. Thanks. I have watery ear problems too but they've lessened in the last year. I "think" this was related to being allergic to my dog who had a yeast problem and cuddling with him anyway. Still tho, if I put peroxide or alcohol in them once in awhile, they feel better. I also have paget's of the skull so this could be pressing on my ears now too. My right eye has already been affected according to my optomologist. I mention this because others may have this too .. anyone know a paget's specialist ? Tc . D

Candidiasis will do this too. You can get tested for this or just treat it via diet and supplements. The info is on the web .. Are you gluten and dairy free ? Both of these can act as opioids in people with leaky gut which makes you crave them ... Eating too many carbs will definetly make me eat more frequently too tho. They just don't hold me like real food does. Fats help but not as much as eating some meat ... tc ... d

Sorry to hear this. We went through some of this with my dd too. She missed a lot of school due to illnesses but not as much as you are. Have you looked at your diet ? My dd has switched to a plant based mostly vegan diet (no gluten or dairy !) and is feeling better than she has her whole life. Your parents may need to take you to an integrative doctor to get a handle on this ... They look for the CAUSES of illnesses but since they're MDs too, they know how to read all those medical tests. Then they decide which route to take for each patient ... just google integrative doctor in your area ... tc ... d

From what I've seen, food intolerances are the main caues for digestive problems but most gi doctors won't look for these because they're only trained in giving meds and doing procecedures ... They don't look for causes ... So far celiac disease and h pylori have caused me to get gastroparesis ... both result in gut damage. Celiac disease can be addressed via diet and h pylori is addressed via antibiotics. An integrative doctor can help with finding the CAUSE of your digestive problems by running the appropriate tests ... Or you can do your own elimination diet. Just be sure to keep these possilbe offending foods out of your diet for a few months then add them back once you're feeling better so you can really see if they were part of the problem. Adding these foods back in before you're feeling well won't give you a clear answer. tc ... d

It's every chemical that's in blood that we miss out on when we're upright. Dr peckerman called hypoperfusion.

So sorry to hear that you and your daughter are going thru this. The advice you've been given here is the best I've ever heard. I certainly could've used this when my dd was younger. I have one idea to add. Some people are visual learners and would understand this better if there was a book or article they could read. Something that explains your illness, but doesn't scare her. Also, My biggest problem raising my daughter was with what others were telling her about me. I was diagnosed with cfs, so She heard that I was lazy, crazy and useless from several people in her life. My doctors were not helpful at all here. (hmm, She never met my cfs specialist but I'm not sure it would've made a difference with all the negative comments from everyone else). We're working on undoing this damage but her negative / condescending attitude towards me is so ingrained that it's a real struggle .. She was only two when I became too sick to function. Now she's 24. I'm fortunate that she has become health conscious in the last few years so she totally understands what traditional medicine and my diet did to me. She's feeling better now than she did her whole life, so she really gets it. Tc .. D Ps. I hope I didn't fuel your anxiety here. I was just trying to make you aware of how important it is that your dd understands your illness and doesn't allow others prejudices to influence her. You have the advantage of all the info on the internet and I didn't ..

Um, I may have just accidently reported this post. My tablet is too sensitive to touch. Sorry if I did. So this sounds like normal blood vessel response to lack of blood. Whether it's from low blood volume, a faulty heart or an impengmant (sp?) Of our blood supply anywhere in our bodies. My reaction to this test would be different if I'd been well nourished, rested and supine at least an hour beforehand but I can hardly think when upright. I can feel this too if I strain my brain on medical research or talking on the phone while supine but i'd been told it was because I'd used up my neurotransmitters. In fact typing on my computer for too long prior to eating breakfast will make me feel horrible. If I stop, eat, and rest for about an hour, I feel fine supine again. I know our brains need glucose, fats and aminos but what else ? Btw, I understand that this could be from physical brain damage but I'm keeping that in the background and hoping it's not. Fwiw, I think it's possible that our neurons are blocked via toxins or antibodies which may be undoable. I still have gluten antibodies and my mercury was high the last time it was checked. My ataxia was probably from gluten antibodies.

Does this tell us anything we didn't already know ? Upright bad. Supine good. Lol .. This sounds like it could be from any of the reasons listed for dysautonomia. Out of curiosity, I wonder how long patients were allowed to be supine before this test. My values would've been very different if I'd been allowed an hour of supine time just prior to testing.

I just bumped the pots and your menstrual cycle thread for you. I'm post menopausal so I just went through this. Tc ..

Bumping .. Check out links from my post in june 2, 2010. # 13. The Sciencedaily, etc. Are we allergic to our own hormones ? I have thyroid antibodies. Is this the same ? Fwiw, I haven't had any real obvious menstrual symptoms in over a year (yay) but I still have the same dysautonomia symptoms.