stacdliw

Northern Dancer, have you been tested for GERD? A lump in the throat is a commom symptom of GERD. As for the nausea, you may want to make an appointment with a GI and be tested for gastroparesis, which is slowered digestion. I believe gastroparesis is a symptom of dysautonomia. I have severe GERD and moderate/severe gastroparesis. GERD can cause nausea as well. I take phengren for the nausea and it is a life-saver! I,too, suffer in pain on a daily basis. Do you have fibromyalgia? I suffer from severe fibromyalgia and suffer from muscle aches in my legs, arm, hips-- heck, my whole body aches! My primary care physcian prescribed Tramadol which helped a lot. Now, I have an idopathic pain disorder in my abdomen that radiates to my back and I see a pain specialist and take oxycodone for my pain. I was just officially diagnosed with POTS in 2010, but my neurologist thinks I've been suffering with dysautonomia for over 17 years since I first contracted Chronic Fatigue. Each year has gotten a little worse than the last. My only hope is that since my disorder appears to be idiopathic that one day, it may disappear as quickly as it appear. All I can do is hope. But, please go to the doctor if you are suffering. There is no need to feel nauseous or be in pain. Some people hate to be on medication. Heck, if medication makes me feel better, I say take it!

No, but I suffer from what I think is Restless Leg Syndrome. Three nights this week, my legs have ached sooo bad that I can't keep them still and I was up most of the night. So let me know if Mirapex helps you. Perhaps I'll ask my doctor about it.

My idea of a "good" day is that I'm not bedridden with debilitating fatigue and that I can walk through my house without huffing and puffing. A fantastic day is a day that I feel well enough to get out of the house. Not too many of those days for sure!

With Dysautonomia, my neurologist believes that over the last 17 years my disorder has progressed from Chronic Fatigue, to gastroparesis, to Autonomic Neuropathy/Dysautonomia, Pots, and now an idiopathic moderate/severe pain disorder in the upper epigastri area that radiates to the lower back. I have only been been diagnosed with POTS for 17 months, but in the beginning, I experienced much more lightheadedness when standing. Other than that, the symptoms remain the same: breatlessness when walking short distances, debilating fatigue, and occasional hypersomnia.

I, too, have fibromyalgia. I've had it for about 17 years now since being diagnosed with Chronic Fatigue. My neurologist at Vandy referred me to a rheumotologist when one blood panel of immunological testing signaled a possibility of Lupus. Luckily, Lupus was immediately disregarded as a potential new disorder. However, when I asked the cause of my leg pain when I gently run my fingers up my legs, he said, moderate/severe fibromyalgia! I take Cymbalta which has helped a lot. I recently discovered I was low on Vitamin D and I'm taking 5000 units of Vitamin D daily. I am pleasantly surprised at the relief in muscle pain this has provided. I strongly urge you to have your Vitamin D levels tested. I use to take Tramadol for the pain; however, I have recently developed an idiopathic pain disorder ( which my GI believes is caused by the neuropathy) and now take oxycodone as my primary pain reliever. My pain specialist also prescribed a topical pain reliever called Voltaren Gel which helps as well. I also use a heating pad for pain relief. I recently bought the Petite Thermophore Heating Pad from Battle Creek which has a Velcro strap to allow the heating pad to wrap around my leg-- it has been a godsend! I recommend it to anyone who needs a heating pad to wrap around specific areas such as the legs or arms. Hope you find some relief from the pain of fibromyalgia soon. It truly can be maddening! Good Luck!!

Debilitating fatigue as well!

I've taken Topamax before I was diagnosed with POTS and since my diagnosis. I can honestly say that I have not noticed any difference with my POTS symptoms while taking Topamax. Yes, I do experience the brain fog, but I just attribute that to the dysautonomia and my age. It helps with my migraines so much, I am afraid to stop taking Topamax. What other migraine prevention medications do others take that are as effective as Topamax?

For the past 8 months, I've been battling a daily pain disorder that neither my GI nor my neurologist knows what is causing it. I'm often beridden with the pain and housebound with the amount of oxycodone that I'm taking to relieve the pain. However, I just told my brother tonight that I can handle this pain and many of the symptoms of my POTS, but it's the debilitating fatigue and brain fog of dyautonomia that affect me the most physically, emotionally and socially. I just can't explain it, but days when I soooo fatigued, my thinking processes are slowered, I feel depressed and unmotivated, and I could give a hoot about anything. Yet when I feel some energy, I'm no longer depressed, I laugh and make jokes (even about my condition), dig into the chores that have been neglected for days, weeks.... and most important, I feel myself again. This summer has been bad. I've had more bad days than good ones. Here's hoping for a fabulous Fall!

You'll be sorry that you asked! I have had the month from ****! The moderate/severe pain right below my sternum, which no doctor knows the cause, has started radiating to my back as well. Though pain medicine eases the worst of the pain, pain still lingers, especially when I stand, so I am bedridden for many hours. In addition, I've lost my appetite, which is rare. I went for a second opinion since my original GI left for another university position. Luckily, he, too, could find no definitive reason for by pain, though he speculated it may be related to my gastroparesis or Autonomic Neuropathy. The best news is that he assurred me that whatever the cause, it "isn't dangerous". Before I left, I asked him if he would become my new GI and he said, "Yes, you are a very complex case. I like challenges." Yep, didn't need a doctor to tell me that my health problems are complex. At the end of July, my husband and I traveled to Denver to help our daughter move into a townhouse. I almost didn't go because I had been so ill with the pain, fatigue, and POTS symptoms, but I don't see her that often and decided to make the trip. I knew I made a mistake within 3 hours of pulling out of the driveway. Severe pain hit and there I was strapped in the seat unable to lean back because of all the stuff we were taking to our daughter. Even with pain meds, it takes about 30 minutes for the worst part of the pain to ease. It was horrible and there was my husband, in the middle of it, asking me rhethorical questions that he expected me to answer!!!! I finally blew, turned off the radio and told me to PLEASE be quiet and let me suffer in peace! Weird thing, with Day 2 pain, while I had pain right under the sternum, I was also have brief spurts of electric current type pain on the lower part of my abdomen. That definitely sounds like neuropathy! I haven't had that sensation again though. It takes 2 days out and 2 days back from Ky. to drive to Denver and I experienced that pain experience everyday. Not fun at all. I did have a couple of good days, but then eating out at restaurants caught up with my gastroparesis. On moving day, I woke up so nauseous I couldn't even hold my head up. For 5 hours when there was no mattress to lie on, I had to lie on the hardwood floor sick as a dog. Took 3 days to get over the nausea. When we finally got back to Louisville, I slept for 28 hours. That's right, 28 hours straight with breaks only for the bathroom and drinks. I get hypersomnia often, but this breaks my previous record of sleeping 19 hours straight. Of course, I continue to have my daily pain attacks. Weird thing, they are generally initiated by liquids! I never know when or where they will begin. Normally, I have to take 5mg-10mg of oxycodone to ease the pain, so that keeps me housebound. The pain may or may not return in 4-5 hours. I've had the pain last up to 18 hours. Last Saturday, our of nowhere, I had excruciating sharp shooting pain in my back around the hip area. Took 40 minutes to ease the pain with 15 mg of oxycodone. After the episode, I was totally exhausted. I'm normally an upbeat and optomistic person, but this last month has really tested me. I'm soooo tired and sick that I actually went 10 days without bathing!!! Of course, I did nothing to get very dirty, but never in the past, would I ever go 2 days without bathing. But little things are just overwhelming me right now. I went to the Pain Specialist yesterday and you have to report new symptoms, so I reiterated this story. When I left, the doctor just patted my shoulder and kept saying over and over, "You will get better, you will." Thing is, I don't know anymore. Things have gone down hill so much in the past couple of months that I'm not that hopeful anymore. Is this my new life-- never knowing from one day to the next what new symptom will occur? And will this new symptom be even more debilitating? Sorry for being such a downer, but I really needed to vent to those who understand. It's just so overwhelming. I was a former school speech pathologist and I always get depressed around the start of school because it reminds of how much I have lost. Thanks for listening! Bev

Fabulous news! Glad you were proactive and contacted your past employer. If you wouldn't have taken matters in your own hands, you would have never have gotten this opportunity! Way to go!!!

Definitely! My doctors now believe that most, if not all, of my debilitating disorders are due to autonomic neuropathy, beginning with Chronic Fatigue 17 years ago, followed by gastroparesis, then dysautonomia and POTS, and now this idiopathic moderate/severe epigastric pain that is triggered by liquids. I'm just waiting to see what else autonomic neuropathy blesses me with!

Yes, my official diagnosis after all the testing at Vanderbilt is idiopathic Autonomic Neuropathy. When I was diagnosed with idiopathetic gastroparesis about 7 years ago, I volunteered to undergo a biopsy of my stomach lining for a research study my GI was doing concerning causes of GP. My results: idiopathic gastroparesis. So I guess you can call me Ms. Idiopathic Everything!

I have had the 5-hour glucose test. I don't have a seizure disorder so I can't give you any indication about side effects. I do; however, have gastroparesis and the test made me extremely nauseous to the point I thought I was going to throw up. Of course, the nurse told me if I threw up I would have to repeat the test. I did everything in my power, including lying down on chairs, to make sure that didn't happen! It was the most miserable 5 hours of my life!! Hope you have a better experience!!!

I see Dr. Cherdak as well. It may not be the diagnosis that you have wished for, but at least you have an official diagnosis and can move forward from here. I hopeful that you will see an improvement in your health and energy levels with the B12 treatments and new medications that Dr Cherdak prescribed. I remeber when I got my test results back that I was shocked that my B12 levels were within normal limits. I was convinced that I had abnormal B12 levels because I felt so devastatingly tired all the time. I just can't imagine how tired you must feel with such low B12 levels!!! Talking about running on empty!

Wine also triggers horrible migraines in me! The closest thing to alcohol I drink is root beer!

I've had gastroparesis for over 7 years and it has amazed me how little I eat sometimes. Like most of you, I rarely feel hungry and when I do eat, I get full quickly. I rarely eat before 4pm and tend to get hungriest between 10pm and midnight. It's a real struggle for me to eat something in the morning so I can take my morning meds. Before POTS though, I rarely lost weight because I did nothing but lay in bed since I felt so bad.

I get at least 3-4 migraines per week! Because Relpax is so expensive, I first try to relieve the migraine with Excedrine Migraine, which works maybe 30% of the time. Glad that this post was started. Last week, I just emailed my neurologist at Vandy who diagnosed me with POTS to see if my preventive migraine medication, 50mg of Topamax 2x daily, was even effective since POTS was neurologically based. My thought was that nothing was going to prevent these migraines. However, after reading everyone's posts, I have hope. It appears that I am on an extremely low dose of Topamax for the severity of my headaches. I need at least 100-200mg 2x daily vs. the 50 mg 2x daily I'm now getting. Thanks for giving me hope that I may be getting some relief soon from this horrible migraines!

1. Debilitating Fatigue 2. Tachycardia resulting in shortness of breath 3. Brain Fog 4. Nausea/GI Symptoms 5. Frequent Migraines

If the results of a Gastric Emptying Study indicated that you no longer have gastroparesis, that test really reflects only how your stomach is emptying on that particular day. If the test was performed on a different day, you results could have been totally different and may have indicated you had moderate gastroparesis! I've had moderate gastroparesis for 7 years. I take prescription nausea medication on a regular basis. Thankfully, I really can't say that I've noticed any significant delay in how quickly the nausea medication begins to work-- generally feel some relief within 20 minutes. However, I just received a prescription for the narcotic Opana from my Pain Specialist. It took over 60 minutes for the highest dosage to ease the pain completely! Is it due to the gastroparesis? Who knows, but I'm calling him Monday morning!

So glad that you went to the hospital to get checked out! Thrilled that you didn't have blood on the brain! Did the doctors have any ideas why you were having such headaches and ringing in the ears? Did they treat you for those symptoms?

For sure, the weakness is debilitating. There are days the thought of walking to the bathroom is overwhelming. Forget about making anything to eat-- I grab a granola bar or a piece of ham ( no bread) because I'm just too tired to exert any energy. I have had Chronic Fatigue, but the fatigue of dysautomia is as bad, if not worse.

If your doctor suggests that you go to the ER, I would go to the ER! He is concerned enough about your symptoms and you should be too. These symptoms have lingered, so something is not right. It doesn't sound like the symptoms are going to spontaneously improve. As the old saying goes, "It's better to be safe than sorry." Honestly, why suffer with these symptoms if they can be cured! Blood on the brain doesn't sound like something you want to mess with! Please go to the ER!

Yep, I'm sitting at the computer right now with a blanket over my legs. I always wear a sweater in the house as well. Just in the past week, when I go to bed at night, I'm freezing. I've been too sick to remove the electric blanket, so I've been turning to blanket up to 4 to get warm. Don't know what's wrong with me either-- I get goose bumps too. Weird.

I have symptoms like yours when I'm experiencing hypersomnia. I'll sleep and sleep and sleep. If I do try to wake up, I'm so groggy, I can't keep my eyes open and I feel like I'm "not there." When I don't force myself to wake up, I'll sleep from 14-17 hours. I've never taken my blood pressure during those episodes, so I don't know if that's a factor.

lieze, I take it that if you don't have a formal diagnosis that you are not on disability. It seems to me that your first step is to get a definitive diagnosis so you can get your health under control. Once you get a definitive diagnosis, you need to apply for disability. If you get approved for disability, you will receive a monthly check that will allow you to live without being so dependent upon others. To ease the stress of childcare, perhaps you could talk to your husband about him taking the children several nights a week and/or for the weekend. Those children are his responsibility as well. Are your parents on a limited income? The drink/food issues may be due to fiancial concerns. Adding 5 people to the food bill can add up. Is there any way you can contribute the grocery bill and specifically buy the food and drinks that you and your children need. That way your mother can not complain about you and your children are eating and or drinking. Lastly, ask your mother her suggestions of how to handle your situation. Explain everything exactly as you have told us-- an unsupportive husband, how sick you are, how you keep losing weight, how overwhelmed you feel, how you feel that your mother is willing to help others but not you etc... Then ask her directly, how should you handle the situation that would be in the best interest of your health and your children. What do you think she will say?