circuscat

Hi Mare- I was hoping you were north bay so we could at least meet for coffee! I have all the stuff you mentioned too. And I know what you mean- you don't want to have anything, at the same time if you are honest with yourself you know that something isn't right. I also have flares where I honestly feel like I can't go on living like this, and then times where other than being tired, I feel normal. During those "normal" times it's easy for me to talk myself into all of it being a mistake, or not happening, etc. Then BLAM!!!!! I get flattened out of the blue and then I remember, oh yeah- this thing..... The Marfan's Clinic is at Stanford. He said he normally sends EDS people to UCSF but felt I could get in faster in the Marfan's Clinic and they do at least treat the worst of the ED Syndromes- the one I really don't want to have (the vascular type). But my mom died from a dissecting aorta, so that history I think is why I'm being seen. All of my male relatives are really tall- anywhere from 6'3" to 6'7"- so a Marfan's Clinic isn't actually a bad start. Mainly I'm afraid of yet another "we can't find anything, so go home" diagnosis. soooooooo tired of it. I am doing salt and 2+ liters of water every day and I do think it's helping. Good luck and please keep me posted on how it goes, and if you like Dr. Miglis.

Hi Mare- where do you live? I'm in Mendocino County. My Tilt Table Test was normal- or actually, BORDERLINE abnormal but nothing that he would treat or order further testing for. That was a little disappointing. My BP didn't fall below 115, which is HIGH for me. So I'm a bit confused at this point, seems like yet another instance of "I think you have ________; oh, wait a minute, no you don't". I do have other things like heat intolerance, the GI stuff I guess is considered part of autonomic dysfunction, eustacian tube that doesn't respond, extreme light sensitivity. Plus if I stand up quickly I have to grab something and put my head down or I will pass out. None of that seemed to show up on the TTT. I said it was like when your car makes funny noises and you finally take it in to the shop, where the mechanic starts it up and it runs perfectly! However my symptoms, my extreme flexibility, and family history (mom died of dissecting aorta) are sending me to the Marfan's Clinic to be evaluated for Ehlers-Danlos. He said that if I have it it can explain my autonomic symptoms. That's in two weeks and I'm not sure how I feel about it. I'm hoping to FINALLY have an explanation for all of these things I've dealt with forever, that always end up being idiopathic and primary (meaning, we don't know why and can't do anything to help you), but I'm so used to the "further testing reveals nothing". Seeing a therapist is a great idea. I did that after I got the diagnosis of GI dysmotility- same thing- incurable and not a whole lot of treatment. So I did a ton of research about diet, meds, lifestyle, etc. Figured out what I needed to do to feel my best, then went to a really good hypnotherapist and said, "I know what I need to do, I want to put this all in the back of my head so I do it without thinking". I was tired of feeling like a sick person because I was thinking about my guts 24/7. It was really, really helpful and let me move on with my life and concentrate on what I CAN do, not obsess about what I can't. I think therapy should be a part of every treatment plan for chronic illness. Who are you seeing at Stanford? I saw Dr. Mitchell Gordon Miglis, and liked him a lot. He is very nice, thorough, communicates well, and is empathetic. Good luck and keep me posted!

HI- thank you for that, it's very interesting. I have been diagnosed with chronic fatigue but had never heard of ME. I'm too tired to process it now, coincidentally (talk about brain fog). Just got back from a long day seeing a cardiologist for a baseline visit (two hours from here, so a lot of driving) followed by picking up a home sleep study monitor- then the drive back home. My husband walks 45 minutes a day and gets "endorphins". We always talk about how I don't get that feeling, ever. I just get tired. I can't walk as long as he does but was walking 20 minutes before I got so sick last summer. At that point if I walked five minutes around the yard it was a lot, and there were days I couldn't even manage that. Where do you find an ME/CSF doctor?

Claired- honestly, I have no idea. The test really affected me mentally and emotionally and I was in a complete fog when it was over. He showed me results and graphs and such but I was so out of it by the time it was over all I can remember is basically "wah wah wah BORDERINLINE wah wah wah DIDN'T DROP BELOW 110 wah wah wah wah FLIGHT OR FIGHT wah wah wah". I was also working on a headache from tension and no sleep all night the night before, and I have discovered that when I have a headache my BP rises, so maybe that skewed the results a bit? I have a follow-up visit with him in May so hopefully I can have him explain it to me when I'm more clear-headed.

Hi Dizzy Girls- I'm very new to all of this (ALL of it!), and have been doing a lot of reading. It seems like I have recently read that BHMS is now considered EDS and that they don't like to use that name anymore because the "benign" part of it is misleading, making it sound harmless when it fact it can be debilitating. I could be wrong- like I said I'm new and I have been reading tons of materials, so I could have gotten it wrong.

Thank you Chaos! The Marfan's Clinic is in the same hospital system, and I am seeing a cardiologist there for evaluation. So she will have access to all of it and maybe she will have some thoughts on it. I do have autonomic symptoms and he felt that likely I have ehlers-danlos and that would explain them. Although I'm a bit confused about how EDS and Marfan's differ. I do have very tall relatives (as in 6'7" tall!). I got the paperwork today and they want a complete story of my life and the lives of all of my relatives, lol. And asked for family photos! At any rate it should be interesting if nothing else. I see you have a whole list of co-morbidities which seems to be par for the course with autonomic disorders. A lot of things I had never heard of even two months ago! In fact until four years ago I had never heard of the first domino in my set here- GI dysmotility. That led me this year to the autonomic dysfunction diagnosis, which is in turn leading me to the connective tissues disorders. Now I am learning about all kinds of things I had never considered- hammer toes, reynauds, MCAD, sleep disorder (getting my home monitors tomorrow because I slept a total of 1 hour 20 minutes spread out in little bits and never did hit REM or deep sleep state in the sleep lab), CCI- I wonder when it is going to stop!

Wow, katybug, it sounds awful. It was stories like yours that made me so nervous about getting it done! I struggle with nausea and vomiting anyway, so I figured if anyone is going to get sick it will be me. But other than a tiny bit of nausea, not even my "normal" amount, my tummy did fine. I have never gotten motion sickness- have been on rough seas, turbulent planes, windy roads, etc. I don't know if that has anything to do with it (probably not, come to think of it). Also- I don't sweat (which makes hot weather unbearable) and did not have an issue with that. The TTT wasn't awful, but certainly not in a hurry to repeat it. If I had to I could grit my teeth and get through it. Mostly disappointed that I didn't get anything helpful out of it- other than realizing I probably do have Reynaud's (never really considered it before), and that the specialist seemed fairly sure that I have Ehlers-Danlos Syndrome, which he said would explain my autonomic symptoms. I get evaluated for that in a couple of weeks. At this point I am really, really tired of doctors! And just want to move on with my life. And I totally get the lemon law thing, lol! I've often said I'd like to replace everything from the back of my throat to my hind end with PVC pipe.

I wonder if generally teens are the first to be diagnosed as opposed to younger kids, not because it doesn't exist, but because their symptoms either go unnoticed because they can't really communicate them, or because they are diagnosed with other things first?

Actually I have heard great things about UCSF Pediatrics. The friends I have who have taken their children there for treatment have been treated very well. My issues were in gastroenterology and my daughter with their Teen Clinic (for eating disorders). Good luck with your daughters! I actually have hope for young kids- medicine is moving so quickly now and they are coming up with amazing new treatments all the time. I honestly think the young people with these diseases have a chance at being cured. Someone my age (60)- not so much. But good to think there is hope for the younger generation!

Thank you! Yes- he's very nice, kind of reminds me of Jason Schwartzman of the Wes Anderson movies (Rushmore, Grand Budapest Hotel, etc.). Oh, and I don't know if I can say this here, but I have been to both Stanford and UCSF (for unrelated things) and hands-down I prefer the treatment at Stanford. It's about an hour farther for us to drive (four hours as opposed to three), but you feel like a person at Stanford. I do know people who have been to UCSF and loved it- but my experience there as well as my daughter's was not great.

HI there- Yes, I do have other symptoms of autonomic dysfunction, and have a diagnosis of global autonomic dysfunction from the neuro who referred me to the autonomic dysfunction clinic. But on my patient sheet after the visit the only diagnosis from the auto guy was Ehlers-Danlos, and a referral to the connective tissues disorder clinic for more evaluation, as well as an echocardiogram. However when I asked him (by email because I was too wacky to understand anything he was saying after the ttt) if I do have Ehlers-Danlos, would that explain my other symptoms and he said yes, it very well could explain my autonomic issues. So.....confusing to try to sort it all out. How did you feel during your TTT? Did you faint, get nauseated, etc? All that happened to me is the room got dark, felt like I couldn't breathe and my hands and feet got very cold. Took my temperature today with two different thermometers and it was 96.0. I wonder if that is also part of dysautonomia? Thank you for your reply!

I had my tilt table test a week or so ago. The results were "borderline" and the doctor said at this point he wouldn't prescribe meds or order any further testing. I showed him my crazy flexible hands and asked him about Ehlers-Danlos and now have a referral to the Marfan's Clinic for evaluation. He said the test was borderline because my BP never dropped below 115. This was really surprising to me, since my normal BP isn't generally that high. I have been taking it at home since and it has never gotten above 105. Last night, for instance, it was 88/65. It is consistently that low. I was very nervous about the TTT and had to drive down the night before and spend the night in a hotel (due to the distance), and got zero sleep the night before. The only real response I had was to the "heavy breathing" part of the test where I had to do 8 yoga breaths in a row. At one point my BP dipped. He said it was only a tiny bit lower than normal, but then instead of coming back up, it suddenly took a sharp spike downward before coming back up. I did not faint, but the room went dark and I felt like I was having a hard time breathing.The TTT lasted ten minutes and no meds were given. He said the test did not show orthostatic hypotension- although at home I often have to grab a counter and put my head down upon standing or I will black out and hit the floor. I have read other descriptions of the TTT and they lasted much longer, and involved IVs of meds, etc. Just wondered if anyone has had one like this, why mine would have been so short (maybe they saw what they needed to in that time?), etc. At this point I'm not sure if I have a diagnosis of dysautonomia or not, although I do have other symptoms- headaches, GI dysmotility, heat and exercise intolerance, and so forth. So was this a waste of time and money or????

I was recently seen at the Stanford Autonomic Disorders Clinic and was very happy with it. They work closely with the GI dysmotility department, too. My doctor was Dr. Gordon Miglis and I really liked him. I would think a teenager would respond well to him because he is young and cute and extremely nice. I have been seen by GI, Endocrinology, Neurology (Headache clinic) and Autonomic Disorders Clinic at Stanford and have had excellent, thorough treatment at all of them. EVERYONE is super nice- from the security guards to the office staff to the technicians to the doctors themselves. Really a great place, so I highly recommend it. I have a referral to the Marfan's Clinic coming up in two weeks. Good luck!

I am VERY new to this and not even sure I have a solid diagnosis of autonomic dysfunction yet. A neurologist I saw diagnosed it based on my history and one office visit, ran a zillion blood tests that were all negative and then told me there was nothing I could do but treat the symptoms. I asked him for a referral to Stanford and have seen a specialist in Autonomic Dysfunction who has ordered a TTT for me, but according to my visit summary there is no mention of autonomic dysfunction diagnosis. I have had horrible tummy issues my entire life, been through the gamut of tests, etc., and finally in 2011 got a diagnosis of GI Dysmotility of the small bowel and colon inertia. The episodes I have are of EXTREME nausea (like, please kill me if this nausea doesn't go away soon), and vomiting that might last for a couple of hours to several days, followed by an hour or two of uncontrollable shaking. I have been taken to the ER twice by ambulance for this (a two hour trip) because it's so bad, and have been seen more times than I can count in ERs and urgent care centers. If you have ever had the norovirus, that pretty much is what it is like for me. In fact, I had the norovirus two years ago and didn't realize it, just thought it was another episode, until my husband and his parents all came down with the same thing. I had CT scans, MRIs, xrays, small bowel follow through, ultrasound, blood work, etc. and all of it normal. Finally my GI doctor sent me to Stanford where I was given special testing that confirmed GI Dysmotility. Just like the neuro- they ordered a zillion bloodtests because they assumed that I had an auto-immune of some type- all came back normal. I also get awful headaches that don't respond to migraine meds, am allergic to oral NSAIDs and codone/codeine drugs, and so all I could do is wrap my head in ice and try to get through the next 32 hours until it went away. Again- sent to Stanford Headache Clinic where i was diagnosed with trigeminal autonomic cephalgia. I also suffer from extreme fatigue and have said it over and over to every doctor I've gone to but none will take it seriously. In addition- I can't tolerate heat because I don't sweat, and when I try to start any exercise program, I always end up sick. If I get too tired, I will have a digestive episode of the awful nausea. I also have orthostatic hypotension and have had it my whole life. I was sent home from school in 6th grade because I stood up from my desk, passed out and hit the floor. I have a lot of orthostatic hyptension, but have learned to live with it. I try to get up slowly- if I forget and jump up, I head for something to hang onto and bend over until it passes. For me it is an inconvenience but the headaches, digestive issues, and extreme fatigue are what are ruining my life. I have extremely flexible joints but no one has ever asked me about that. I can touch the BACK of my wrist with my thumb- although from what I have read is if you can touch the front of your wrist with your thumb that is hypermobile. I am going to ask the neurologist about Ehlers-Danlos when I see him in two weeks for the tilt table test. One thing that has really helped me a lot with the digestive issues is taking domperidone- which is not legal in the US but your doctor can prescribe it for you under the compassionate use clause in the FDA. It is a pro-kinetic, like reglan but without the horrible side effects. It helps food move through your digestive system. I also eat very small, frequent meals. I find the longer I go between eating the harder it is to eat, so try to eat every two hours. If I go five or six hours without eating, when I do eat it will likely trigger an episode of misery. Also, if I feel an episode coming on, I IMMEDIATELY hit it with a cocktail of zofran and ativan, which is what is recommended on the Cyclic Vomiting Syndrome website. I also take magnesium oxide every night, which also helps keep things moving. Doing that has kept me out of the ER for several years, until this summer when for some reason I began having a lot of episodes of weakness, dizziness, headaches, and nausea. I think it's because I hit my head really hard in May and got whiplash, but all the doctors say no, that wouldn't cause symptoms to flare. If you have digestive issues from this I would strongly encourage you to find a motility specialist who may be able to help you. Like Autonomic Dysfunction specialists- they can be hard to find. You have to go to a major clinic like Mayo, Cleveland, Stanford, etc. for the specialized testing.

Thanks for your response! Even though I get dizzy standing up, I'm so used to tests being negative for everything I'll be surprised if this shows something. I was shocked when my GI motility testing came back showing dysmotility because I had just been through about a year of every test my normal doc could think of (ultrasound, xrays, small bowel follow through, CT scan, MRI, blood work, etc) and every one of them came back "boringly normal". My doctor recommended taking my BP when I'm feeling bad to see if it drops and so far not. Went to bed last night with a terrible headache, nausea, fatigue, weakness, etc., took my BP and it was perfect. (116/74). If anything that's a bit high for me.