stacdliw

I always feel better at night! Like you, I start feeling better around 8pm. My normal bedtime is anywhere from 2:30am- 5am. Considering I need 10 hours of sleep, the day is gone before I even get up! Because of my sleep schedule, I NEVER schedule morning appointments! Early afternoon appointments often exhaust me as well, so I try for the 3pm slot.

I normally sleep at least 10 hours nightly. Last night it was 12 hours. I've slept as long as 17-18 hours straight! Anything less than 10 hours of sleep and I feel horrible. Mornings are always bad, but if I get less than 10 hours of sleep, I normally have to go back to bed within 2-3 hours for a long "nap" because I'm just too exhausted to stay up.

I saw your post on the Mestinon topic and you complianed about having difficulty belching and passing gas. I have gastroparesis and I'm a member of a gastroparesis support group. A poster many years ago shared a recipe that is used in hospitals to help patients with trapped gas issues. She claims that it really helps, though I've never used the recipe myself. The recipe is quite simple: mix equal amounts of Dr. Pepper and warmed Cranberry Juice, then drink. Hope it works! Good Luck! Bev Ray

I've had moderate gastroparesis for the past six years and was just diagnosed with POTS (postural hypertension) last October. My nerurologist wanted me to go on Flurocoritisone, but I have allergic reactions to coritisone, so she prescibed Pyrdostigmine 60mg 3x daily. I've tried that dosage several times, but each time, it just upset by stomach immensely. So, I now take 30mg 3x daily and that seems to help. It has significantly improved my "brain fog" and I have seen good immprovement with my "huffing and puffing" when walking short distances. I don't have to ride the motorized carts in the stores as often, though I still have my bad days.

Surprisingly, I haven't noticed the Tramadol affecting my digestive system too much, except an increase in constipation which Miralax seems to relieve. Luckily, I have not noticed any increase in nausea from the Tramadol---- yet! Maybe I should just stick with the Tramadol and suffer with the nagging pain that it doesn't ease since it doesn't appear to adversely affect my digestive system or heart rate.

I've had gastroparesis for over 6 years and was just diagnosed with Autonomic Neuropathy, POTS,and Dysautonomia last year in October at Vandy. I have the type of POTS that my heartrate goes up over 120bpm when standing; however,the blood pressure does not drop and I have no orthostatic intolerance. About a year ago, I began having moderate/severe pain right below my sternum. Within the past three months, the pain became more frequent and tests were run for gall bladder, ulcers, and gastritis. All the tests were normal. I began noticing that the pain occurred shortly after eating or even drinking a sip of liquid. The pain can last from 4-12 hours. My GI and neurologist determined the pain was due to the autonomic neuropathy affecting my entire digestive system and I was referred to a Pain Specialist. When the Pain Specialist took my history, he commented, "You're not a book, you are an epic novel." He also stated that I was a complicated case in that it would be difficult to find a pain medication that would be good for the digestive system as well as not raise the heart rate. He then suggested the Butran Patch as a possibility and said we would discuss it at our next appointment, April 23. When I researched the Butran Patch, I discovered that one of the contraindications for its use was low blood volume. Don't POTS patients have low blood volume? If I can't use this pain medication, I would like recommendations from others as to which pain medications they use. I presently use 2 50mg of Tramadol that I use for my fibromyalgia, but it takes over an hour to ease the pain and even then then is still some nagging pain. Any suggestions would be deeply appreciated. Thanks, Bev Ray

Wow Chrissy, you have had a rough time here lately. I, too, have had a progression of symptoms within the last year, but nothing like yours! I think it is wise for you to get thoroughly evaluated by one of the major medical centers specializing in POTS/Dysautonomia. I was diagnosed last October at Vandy and I was very pleased with how thorough they were with their testing. Hope you receive adequate medical care soon. Nobody deserves what you been through! Bev Ray

I have just endured a year long bout with what I thought was gall bladder pain in my upper right quadrant. Had all the tests and they all came back normal. The pain has increased in frequency and severity and when the HIDA Scan came back normal, my GI said it was due to the Autonomic Neuropathy. My neurologist at Vandy confirmed that it probably was AN causing the problem. The pain now has gotten to the point that it occurs daily generally after my first meal, something as simple as a piece of toast. After a regiment of erythromycin for a week and three days of a liquid diet with little change in my pain, I've now been referred to a pain specialist. The doctors don't know if the pain will ever go away or just wax and wane like other dysautonomia symptoms do. So yes, AN can cause pain in the abdominal region with no explainable reason. If your pain is due to constipation, I agree with others who recommend Miralax. I was so constipated once that when my GI ordered a test requiring a colon cleanse, the cleanse did not move my bowels! Nothing! Constipation can cause horrible and excruiating pain! My GI told me that I could safely use up to 3 doses of Miralax in one day for the rest of my life. Now,Miralax is definitely my friend! I have had gastroparesis and small bowel dsymotility for over 6 years; however, I am just now undergoing treatment for Small Intestine Bacterial Overgrowth. Talking about a very uncomfortable condition! I never had trouble with this problem before until the abdominal pain problem became quite severe. I know my digestion must be significantly slowered, but I'm not very nauseous-- weird! I hope you find relief from your pain soon. Bev Ray

I'm like a baby "who has their days and nights mixed up." I feel so bad in the morning and afternoon, with no energy and tachcardyia if I try to walk. By nightfall, I feel much better! There are nights that I do laundry at midnight! Rarely do I try to do anything physical before 6pm.

I get so many migraines each month, I take 2 Topamax daily as a migraine preventive. Even with this preventive medication, I still get over 15 migraines monthly. Because my prescription migraine medication (Relpax) is costly, I do take Excedrin Migraine first to see if it will ease the headache. Sometimes it does help, sometimes not. As for it affecting my heartrate, I can't say that I've notice any adverse effects. Most of the time with my migraines, I'm laying down so I don't notice an increase in my heartrate as much. As far as my prescription medication, I LOVE RELPAX!! I couldn't live without it and panic anytime I get low in my supply. It generally relieves the pain within 30 minutes and I've only had 3-4 instances that I've had to take 2 or more to get rid of my headache. I HIGHLR RECOMMEND RELPAX! Good Luck! Bev

I'm 58 now and received my official diagnosis of dysautonomia and POTS and Vandy last year at 57. I, too, suffer from debilitating fatigue from CFS, fibromyalgia, hypersomnia, migraines, and gastroparesis. I know how you feel, there are many days that all I can do is just lay in bed and even that is exhausting!

I've taken Singulair for years (prior to being diagnosed with POTS) for allergies and have never had any side effects from the drug. I tried weaning myself off the drug a couple of years ago and take only my Zyrtec, but my nasal congestion was too much. What kind of side effects have people with POTS had with Singulair?

In one way, I feel luckier than many of you all this board. I am 57, with no children at home, and I'm on disability with no fiananical worries. Therefore, when I'm sick, which is at least 5 of 7 days, I can lay in bed all day and don't have to worry about a thing. I truly don't know how I would function if I had to care for children or had to work. I literally don't know how those of you that do it find the energy. I admire each and every one of you! For the past 16 years, I have battled Chronic Fatigue Syndrome and Gastroparesis, but undoubtedly, dysautonomia and POTS have been the most disabling. However, despite having the luxury to just to be sick, I still struggle each and every day with this disorder. I've always had a positive attitude, but days of feeling badly can make anyone depressed. I, too, miss the life I once had. However, I have adjusted to my "sick" life and take life one day at a time. On the rare occasion I feel well, I make the most of that day. My biggest concern right now is that my youngest daughter is getting married next year. My fear is that I'm not going to be well enough to participate in the wedding planning or I'll be so sick that I won't enjoy the whole experience at all. This disorder has already spoiled vacations and holidays, I will be angryif I can't enjoy my daughter's wedding. Bev

Honestly, between menopause, gastroparesis that makes me frequently nauseous, dysautonomia that causes debilitating fatique, and POTS that causes a rise in a heart rate with any exercise, I have no sex life-- NADA! The sad part is I can't say that I miss it. I'm just too sick to even think about it! Luckily, the husband is understanding. On the few occasions that I do feel well, then sex may initiated; otherwise, forget about it! I use to feel guilty about it. However, now I don't. Maybe I'm being selfish, but it's hard to get romantic when you feel so badly.

Hi flower, I am so sorry you are experiencing such difficulty eating. I can only imagine how frustrating that must be! I used to be a public school speech clinician ( I'm now on disability due to a voice disorder), but the problem you describe sounds like it could be a motility problem of the esophagus. Here is one link to esophageal motility disorders http://www.merckmanuals.com/professional/sec02/ch012/ch012e.html. Google other sites to gain further information. I wish I could give you more information, but I have had no experience with swallowing disorders and it has been over 25 years ago since I studied it in graduate school, so I am by no means an expert. However,snce you are having difficulty swallowing, I urge you to make an appointment with an otolaryngologist (ENT);they are the specialist who deal with swallowing disorders. They will perform the appropriate tests, diagnose the problem, and devise a treatment plan. As to whether your swallowing problem is related to POTS-- who knows. It could be neurologically based, but only testing will determine it's cause. Please keep us updated on your ordeal! Good Luck! Bev Ray

Many people with dysautonomia also suffer from gastroparesis, which is delayed stomach emptying. I have suffered from gastroparesis from 6 six years and just have been diagnosed with AN and POTS. One of the major symptoms of gastroparesis is nausea and possibly vomiting,though diarrhea with blood is not common with gastroparesis. I can certainly empathize with you as to how sick you feel. If I were you, I would definitely call the doctor treating you for your dysautonomia and explain your symptoms. It appears you may need a referral to a gastroentrologist for additional testing. At the very least, you should ask your doctor for a prescription for nausea medication. If you should get a prescription for Promethasine be forwarned: it is probably the best at reducing your nausea, but it will put you to sleep!! So be sure to take it when you have 3-5 hours to sleep soundly. Zofran, as a previous poster stated, and Kytril do not caused drowsiness. In the meantime, you can try sticking to a liquid diet of clear broth/drinks and saltines to rest your stomach. Search a diet for a nauseous stomach and stick to that diet until you feel better-- it may take 2-3 days. Hope you feel better! Bev

I forgot to add that I was diagnosed with AN in February 2008. I had no symptoms of POTS at that time. I was referred for AN testing by my GI ( I also have moderate gastroparesis) becaused of obstipated constipation which is a symptom of AN. I began having minor problems getting out of breath when I walked a short distance by August 2008. Cardiology and pulmonary tests were normal. I just thought I was out of shape as I hate to exercise. By January 2009, I was experiencing extreme difficulty with shortness of breath whenever I walked. Again, with normal tests I didn't know what was going on and didn't even know what POTS was. Finally, in January of 2010 my GI referred me to Vandy and I was finally diagnosed with POTS in September 2010. Both my GI and neurologist believe that this is the progession of my disorder: CFS to Gastroparesis(which was caused by undiagnosed AN) to POTS. Overtime, both the CFS and gastroparesis has improved. Both my GI and neurologist believe that none of my disorders will ever completely disappear, but over time, will improve. Right now, my AN and POTS is quite dibilitating. I am hoping that, with time, it, too, will improve.

I was diagnosed with Chronic Fatigue Syndrome about 14 years ago. My symptoms were debilitating fatique, fibromyalgia, swollen lymph nodes, sore throat, unrefreshing sleep, concentration problems, night sweats, and frequent illnesses( mainly upper respiratory). With CFS, you can often pinpoint the exact day that you contracted the syndrome and I remember mine exactly: the day before Thanksgiving 1994. Basically, with CFS you feel like you have the flu but you never recover. Back in 1994, CFS still was not highly accepted as a bonified medical disorder. It was called the "yuppie flu." So, I was treated on a symptom by symptom basis. Luckily, there have been strides in the management of the disorder. I now take 60mg Cymbalta twice daily for fibromyalgia and that has been a godsend! Over time, the swollen lymph nodes, night sweats, frequent illnesses, etc... have decreased. However, just last September I was diagnosed with Autonomic Neuropathy and I suffer from many of the same symptoms as CFS: debilitating fatigue, memory/concentration problems,etc... As a matter of fact, my neurologist believes CFS was the beginning of my AN! Good Luck with the management of your CFS. My suggestion would be to go to a rheumatologist for diagnosis and management for the disorder. Bev

Thanks for the picture! I made me smile! I have cats, so I don't have to walk them but they do keep me on my toes. I'm glad you felt well enough today to take your dog for a walk. I'm sure it was good for both of you!

Keeping my fingers crossed for you! Good Luck! Let us know the outcome when you find out!

My "Road to Pots" has been a long one. I believe it all started the day before Thanksgiving 1994 (yes, I remember the exact date) when I fell ill with a debilitating flu that eventually was diagnosed as Chronic Fatigue Syndrome and fibromyalgia. Then May 30,2003(I remember the exact date again), I awoke with horrible nausea and eighteen months later was diagnosed with idiopathic gastroparesis. Following a bout of obstipated constipation, I was diagnosed with autonomic neuropathy in February of 2008. In March of 2009, I began having extreme breathlessness whenever I walked a short distance. Cardiac and pulmonary tests were normal. Finally, my GI referred me to Vanderbilt in July of 2010 and I officially was diagnosed with POTS in September 2010. The neurologist has diagnosed my conditioned as idiopathic autonomic neuropathy and believes my first symptom of this disorder was the Chronic Fatigue Syndrome and the disorder has progressed from there. She feels that for my POTS, as well as for my CFS and gastroparesis, the disorder will never completely disappear, but it won't become more severe either. Instead, the symptoms will wax and wane and with time, the severity of the symptoms should decrease. So, I guess my POTS started from an illness. Who knows? Only thing I know is that I have it and it has changed my life forever! Oh, I'm of medium complexion, hazel eyes, Scottish/English heritage and no one in my family has had similiar symptoms. Bev

Thanks for the time to update you and your husband's condition. I will continue to keep you and your husband in my thoughts and prayers!

Tennile, I am so sorry that you and your husband and dealing with such adversity. We are all praying for you and your husband. Please keep us informed of his status and how you are feeling.

Sallysblooms-- Thanks for the suggestion concerning the Alpha Lipoic Acid. Where can I purchase it? I am bedridden quite often and would love any supplement that would help. Zaks27 Since you have had a cholecystectomy, your pain may also be a symptom of a disorder called Sphincter of Oddi Dysfunction(http://my.clevelandclinic.org/disorders/gastrointestinal_tract_disorders/hic-sphincter-of-oddi-dysfunction.aspx). My GI ruled it out for me since it is rare for people with a healthy gall bladder to develop the disorder.

I've been having sporadic pain, anywhere from mild to severe, in my right upper quadrant below the sternum for the past seven months. My symptoms are similiar to gall bladder problems, but a high fat meal meal NEVER triggers the pain. On the contrary, a cracker or even a drink of coke may initiate the pain. I have moderate gastroparesis and after a severe pain attack last June, I made an appointment with my GI and he did an ultrasound which came back normal. After another attack in July, he performed an endoscopy to look for ulcers or another reason that could be causing the pain and found nothing. The severity of the pain attacks subsided and I didn't pursue a further diagnosis primarily because with gastroparesis, if the gall bladder is removed, digestion can be further impaired and nausea can increase. I'm frequently nauseous as it is, so I decided if the pain had subsided, I would just live with sporadic minor discomfort than frequent nausea. In the meantime, my GI had referred me to Vandy for autonomic neuropathy, I was evaluated and officially diagnosed with Autonomic Neuropathy, POTS, and small fiber neuropathy in September. In the past month, the frequent and severity of the pain has returned. When I made an appointment with my GI, he told me he didn't think the pain was caused by my gall bladder since I had a clean ultrasound and endoscopy. He believes the pain is due to abdominal neuropathy! I've never read of anyone having abdominal pain due to neuropathy. Does anyone have this pain? Where is your pain? He is ordering a HIDA Scan of the gall bladder to make sure the gall bladder is healthy. Right now, I'm taking Tramadol for the pain, but it takes about 30-45 minutes to take effect. Because of my gastroparesis, I can't take narcotics since it slowers digestion. Dang, which is worse, a bad gall bladder with surgery which may result in a life-time of increased nausea or a healthy gall bladder and this is neuropathy, so there's no cure and I have to live with the pain for the rest of my life? I don't like either choice! Thanks! Bev Ray