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.

Thank you! The test isn't until March 3. And I guess I shouldn't worry about it making me sick- if it does, I'll be in the right place, at least.

Thanks Sarah! Nope, he did not order that test, just the TTT and Valsalva test. My doctor reminds me of Jason Schwartzman and is very, very nice. He spent over an hour with me in the exam room and I felt like he really listened to me (GOLDEN- so used to doctors breezing through and not really getting it). I need to schedule an in-home sleep study, since the one I had with another doctor didn't work (I only slept 120 minutes all night, in small chunks, never hit deep sleep or REM sleep), and an echocardiogram. Also have an appt. with the Celiac Specialist but not until July. I'm getting tired of doctors and appointments, but it'll be worth it to get some answers and hopefully some HELP.

Thank you! I call it the Frankenstein Test because it sounds like the old Frankenstein movie where the monster is strapped to the table and then they stand him up. I have already had kind of a casual diagnosis because of one of my urgent care visits. The PA was testing to see if I was dehydrated and he did that by taking blood pressure lying down, then sitting up, then standing. He said there was a 20-30 point drop in my blood pressure when I stood up, which showed that I was dehydrated. But then when he tested my urine it was fine. So I asked him what would cause that drop in BP and he just shrugged and said maybe I had a virus (for the tenth time in four months?). But I guess that also is a measure of orthostatic hypotension. I get it all the time standing up too quickly and have learned to stand slowly. Sometimes it is worse than others. When I was 12 I completely blacked out and hit the floor one day at school when I stood up. Not looking forward to the test but I'll be glad to have it done and get it over with. It is being done by my neurologist and he said he would be there with me.

Hello- I'm new here and new to Autonomic Dysfunction diagnosis, although I think I've had it my whole life (I'm 60). My new doctor specializes in Autonomic Dysfunction and after my first appointment with him, he has scheduled a tilt table test and valsalva testing in a couple of weeks. He said he will be there with me when I have it. I was just wondering if any of you have had it and what it's like, what to expect, etc. Thank you!

Thanks for the answer, Corina. I have small bowel dysmotility and so take domperidone. But for a while it didn't seem to be working and the doctor said if it didn't we could try octreotide.

Thank you Katie! I probably would have stumbled on how to do it...eventually!

Thank you, everyone. Still trying to figure my way out around the forum. Is there any way to get email notifications of responses? DKD - I actually have a slow heartrate- it is generally around 60 but can drop down to the 50s, or if I have been given pain meds to the 40s. My BP tends to run low also but will go up when I am in pain (for instance, with a bad headache). But my "high" blood pressure is actually good- just high for me. (for instance, 135/90 would be very high for me). My body temp is also low- generally in the 97s but not unusual to be in the 96s. I will mention the flexibility to the neuro doc when he does the autonomic testing and show him the insane things I can do with my hands. Corina- I notice you take octreotide injections- do you have GI dysmotility?

Thank you, everyone, it is so great of all of you to answer! I have an appointment for a tilt table test and the "blow into a tube" test (don't know what it's called) in early March. Should I mention the extremely flexible joints to the neurologist who is doing that test? He is a specialist in autonomic dysfunction and sleep disorders. Even though it isn't really his field maybe he might know if I should go see someone else about that? I guess one thing I find frustrating is the "Treat the Pieces of a Puzzle" approach by most doctors. I wish the GI who diagnosed the dysmotility had said- maybe you have autonomic dysfunction- or the neurologist who treated the headaches, the ENT who found the eustacian tube issues, the optometrist who found the eye problem, my own local family practice clinic who noticed the drop in blood pressure when I stood up while I was in being treated one of umpteem times for severe nausea/weakness/headache/dizziness. It frustrates me that I am the one who finally said, when after feeling so awful for the past nine months was sent to a neurologist for the headache part- "I have all of these various things- do you think I could have autonomic dysfunction?" And now I feel the same way about the Ehlers-Danlos possibility- you would think since these conditions are often linked, SOMEONE along the line would have noticed how many times I have sprained my ankles and wrists because of my "loose ligaments" and put it together. Honestly, this fall, after the first neurologist told me "all you can do is treat the symptoms" and had no input at all (I mean zero) about what autonomic dysfunction means or how to live with it, I THOUGHT I WAS LOOSING MY MIND. There were times I thought- okay, they should just lock me up in some padded room somewhere because "nothing" is wrong yet I feel so bad. When I finally started feeling better, I would go on an upswing for a few days and think, "Well, whatever it is, it's finally over" and the BLAM- wake up extremely nauseated, or with a bad headache, or so fatigued it would take me 45 minutes to work up the energy to get up and get a drink of water. Statesof - yes, if I sleep too long (or stay in bed too long, since often I am not actually sleeping, just trying to) then I will wake up with a headache that sometimes will go away after sitting up for a while. And when I have the nausea attacks, I have an overwhelming need to get horizontal. It's hard to explain, it isn't that I feel like I'm going to pass out if I don't lie down- more like I feel like I'm going to die (sorry, sounds overly-dramatic, but it is a really horrible feeling). The hardest thing I think is dealing with the depression and frustration at having to postpone, cancel, or not make plans. I'm sure many of you can relate to that "But you look fine!" thing. And I have been mostly gluten and absolutely dairy-free for over 30 years! That was one step in this journey- having a medically-supervised elimination diet that was very strict and that's how I discovered the gluten and dairy issues. I have been tested a million times for Celiac's, always test negative (but I don't eat gluten and I understand that that can result in false negative). I went to a Celiac specialist who felt that based on my CNS symptoms from eating wheat/gluten (I get very cranky, horrible headaches, and extremely constipated from anything with wheat in it) made me a candidate for at least getting the DNA testing. I did- and do have the DQ-8 gene that is associated with it. Next step is she wants me to do the Gold Standard testing- small bowel biopsy- but before I do I have to eat a minimum amount of wheat/gluten every day for six weeks. So far I have not wanted to deal with the headaches and constipation and grumpiness involved. Thank you again for listening to me whine and moan! It feels good just to get the frustration off of my chest and know that there are other people out there who understand, because no one I know in Real Life really gets it. My husband has been very patient but I know he gets tired of a wife who doesn't feel good much of the time. And thank you for all of the information and tips, I really appreciate it!

Hello- I am new to this forum and new to the whole idea of dysautonomia and just looking for information. After a horrible nine months where I thought I was possibly loosing my mind, I got a diagnosis of global autonomic dysfunction from a neurologist. He did a zillion tests to rule out causes for it (all negative), and then simply said, "All you can do is treat the symptoms". At that point I basically did not have a life. Suffering from extreme fatigue, dizziness, weakness, extreme nausea and severe headaches. I have suffered from digestive issues my entire life. Had horrible tummy aches as a child and had exploratory surgery at 12 to try to figure out why (all they found was six inches of my small bowel attached to my stomach, which was cut loose). At 40 I was diagnosed with ulcerative colitis based on colonoscopy biopsies and fought that for about seven years, at which point it cleared up. I have been rediagnosed with probably ischemic colitis (at that time) because UC doesn't usually just clear up. I have always had bouts of nausea and vomiting so severe that it required trips to the ER for IV fluids, anti-emetics, and pain meds. This usually occured a couple of times a year and the diagnosis was always either gastroenteritis or possible food poisoning. Then the episodes began to increase in frequency and severity until I was basically down to eating a liquid diet.I was being seen in urgent care about once a month for the IV fluids/anti-emetic treatment. I was taken to the ER by ambulance (nearest hosp. is two hours away) on two occasions- both times all tests were normal. My GI doc did every test he could think of- all normal. Finally he sent me to Stanford for a second opinion and I was diagnosed with small bowel dysmotility and colon inertia. MORE tests to rule out auto-immune diseases, and treatment of desipramine to help fight nausea, domperidone for a prokinetic, and big diet changes (very small, frequent meals, no diary, gluten, beef, corn, etc.). It took a long time but I finally started feeling better. I was also put on miralax for colon inertia but it did nothing, so I switched to magnesium oxide and as long as I watch my diet, drink a lot of fluids and take the mag. I am doing okay. I had not realized (I know this seems crazy) that it wasn't "normal" to go 8 days between BMs. I also have terrible headaches that don't respond to the usual migraine drugs, did not respond to O2 treatment, and I am allergic to all codone/codeine drugs, and can't take oral NSAIDs. Those headaches ended me up at the Stanford Headache clinic and i was diagnosed with Trigeminal Autonomic Cephalgia (because of the autonomic symptoms involved with the headache- earache, stuffed nose, tearing eye, etc.). I have always had trouble with postural hypotension and as a kid (12) once blacked out completely and hit the floor when I got up out of my seat at school. Can't tolerate heat- it literally makes me ill, and my mother told me that as an infant the heat bothered me so much that they finally got air-conditioning. I also have a eustacian tube that doesn't respond to pressure during an audiology test, which confused the technician. The optometrist I went to to get my eyes checked said, Wow! You have really big pupils (so they were not dilating like normal- which I guess is why my eyes are so sensitive to light). And I have been a life-long insomniac. Had a sleep study done, but couldn't sleep. My total sleep for the night was 120 minutes (broken up into short segments- longest of which was 40 minutes) and I never did achieve deep sleep or REM sleep. The sleep doc told me to try to retrain myself by not going to bed until I thought I could sleep, and if I didn't fall asleep in 20 minutes to get up, if I feel asleep and woke up and couldn't go back to sleep to get up. But then get up at the same time the next day, NO caffeine, and no naps. Unfortunately, doing this really caused my other symptoms to flare (the headaches and severe nausea and weakness) and I simply couldn't do it. All of these put together finally in August got me the diagnosis of autonomic dysfunction. The neurologist simply told me all we could do is treat the symptoms. For me that means knocking myself out with ativan and zofran if it is nausea, or giving myself a shot of toradol in my thigh (an ugly, painful shot) if it is the headache (since no other meds work for me, other than getting a shot of demeral or morphine, and the headaches often occur when the clinic is closed, nearest other med care is two hours away, I have been trained to self-administer toradol injections). So now I have had one visit at Stanford with an autonomic specialist. I am scheduled for the tilt-table test and also a test where you blow in a tube. Had yet more tests (lyme's disease and more auto-immune testing). Just wondering if anyone else had a life-time of symptoms but only recently diagnosed. And also -how do you live with this? I have been prescribed salt tablets and told to drink 2-3 liters of water a day. I have started taking 0.5 mg of ativan at night along with the low-dose desipramine and that seems to be helping me sleep enough to where in general I am feeling better. Still fatigued, but not debilitating fatigue like it was earlier in the year. I have EXTREMELY flexible joints and wonder if this is something I should mention to the neurologist?

"I had an MRI done a couple of weeks ago whilst I was in hospital – which was done at the time due to a suspected chronic sinus issue (although I didn’t think that sounded hopeful as my symptoms just didn’t add up). Obviously this came back normal – although I have my doubts despite asking the messenger doctor whether my whole scan was looked at in depth or whether focus was just on the sinus’s, although I would hope that, that wasn’t the case. As a result I am getting copies on a CD so that the neurologist I am seeing next week can maybe have a second look at them, just in case." This sounds so much like what i went through that I thought I'd comment. I'm brand new to this board- in fact this is my first post. I had classic migraines for years (decades). Then about fifteen years ago started getting these headaches- like yours, always on one side, VERY intense pain (like a knife being shoved through my face), nose stuffed on one side, tearing eyes, etc. It often will start with a mild headache, then over a course of hours develop into the knife-like pain on my cheek, along my nose, or my temple. Like you, I thought it was a sinus issue and went to three different ENTs before I gave up (they saw nothing). I just sweated them out for years. When I couldn't stand it and if our clinic was open, I would go in for either toradol, demeral, or morphine shots. The pain lasts about 32 hours for me start to finish. I tried every migraine drug on the market- none of them touched it. I am allergic to oral NSAIDs, and also allergic to codene/codone type drugs. So all I could do is suffer and wrap my head in ice (which helps some) and wait it out. I finally went to another ENT convinced it was a sinus problem. She finally did a CT scan and SURPRISE! My sinuses are perfect. So she sent me to a neurologist. I ended up at the headache clinic at a major university. By process of elimination (not cluster headache, not typical migraine, etc.) it was diagnosed as Trigeminal Autonomic Cephalgia (headache of the trigeminal nerve with autonomic symptoms). The best treatment is something called indomethecin, which I can't take because it's an oral NSAID. So the next best thing they could recommend is to learn to give myself toradol injections, which I do. I have to be sure that I get it early, before the pain gets over a level 6. The shots don't make it go away immediately, it generally takes about 45 minutes for it to start working, but it will prevent them from going into the full-blown 15 on a scale of 1 to 10. If you want to read about it, it is called the LASH headache (Long Lasting Autonomic Symptoms with Hemicrania). If you google it you can find out about it.