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I wouldn't think swelling in the legs would be a sign of dehydration. Swelling in the legs could be a sign of edema, which could have many causes. Are you overloading on salt? Sometimes salt retention can cause swelling. If the swelling does not disappear soon, I would call Dr. Grubbs office and report this symptom and see what he suggests.

bellajulz, I am so happy for you! I haven't heard of the medication Imipramine, but it sounds like you have found the medication right for you. I know you must feel like a bird out of a cage! Enjoy your new found health!!!

I've had fibro since 1993. The pain from the fibro has increased since I got dysautonomia and I now take Tramadol to ease the discomfort.

leize, you are one strong woman! I have no idea how you are dealing with your health problems, plus a marriage with an unsupportive husband, while being a mother to young children. No wonder you have debilitating fatigue! I hope you are still in counseling because it sounds as if you are getting no support from your husband at all. I hope you are receiving some physical and emotional support from other family members; otherwise, you are going to crash! No wonder you are losing weight! I am thrilled you are so proactive with your physical health. Maybe you need to get proactive with your emotional health and make some changes that will lessen some stress in your life. My thoughts and prayers will be with you durning this difficult period.

Don't know how you moved in the heat! You must be Super Woman. Everytime I'm in the heat, my heart rate jumps skyhigh and I start a huffin' and a puffin'. Needless to say, I'm pretty much housebound during this heatwave!

Thank you hilbilgrl! You were a very good teacher!

OK, I think I followed your instructions. When I hit reply, we'll see if I followed them correctly!

I've noticed that at the end of some posts, the person's diagnosis, medications, and even some inspirational quotes are listed. How do you add that to your posts? When I first joined, I remember adding that information to the website, but I can't find it anywhere! Any help would be appreciated. Please remember, I am an apprentice when it comes to computer skills!

Prior to my diagnosis with POTS and dysautonomia, I was having horrible migraines at least 4-5 times per month. My internist prescribed me twice a day Tompamax as a preventive medication. Then my migraines became more frequent. I began supplementing my prescription Replax migraine medication with Excedrin Migraine over-the-counter medication because I feared I would run out of my prescription migraine medication. When the POTS symptoms began to appear, the migraines became more frequent. I do not take Midodrine, but I get at least 9 moderate/severe migraines a month that require my Relpax medication. That doesn't include the 6-7 minor migraines a month that are cured by the Excedrin Migraine medication. Luckily, the Relpax generally cures most of my migraines with one to two pills within 1 hour. When I was diagnosed at Vandy with dysautonomia and POTS, I asked the neurologist about the frequency of my migraines. She said that migraines were a common symptom of dysautonomia. Since I get so many migraines a month, I really question if my preventive medication is working. So when I go for my six month visit in October, I'm going to ask if the Tompamax is helping at all since these migraines seem to be neurologically based. I'll let you all know what she thinks.

I can only imagine how frustrated you feel. I think it is normal to feel down after all that you have been through and you still don't have the answers to the questions that you have. If there is anyway possible, I would try to go to one of the specialy centers, like Mayo or Vanderbilt, and seek treatment there. At least at those medical centers, the physicians are some of the top experts in the field of dysautonomia and you can finally get the answers and treatment that you deserve. Good Luck in you quest! Don't give up! There are some competent doctors who can help you!

I have had night sweats for the past 16 years. It all started with Chronic Fatigue and fibromyalgia, then menopause and now POTS. I've been having them quite frequently here lately. I wake up sweating mainly on my upper body and I feel sticky and grimey. It is quite annoying to say the least! I have at least 4 pairs of PJ's because of that problem. I'm so use to them now, I just roll over and go back to sleep! I asked my neurologist about my night sweats since QSART results revealed that that I have little/no sweating in the lower extremeties though during night sweats, I can be drenched all over. She said that sweating from heat and sweating from night sweats are totally differently in that sweating from night sweats tends to be hormonal in nature. So you can have impaired sweating from POTS and still suffer from horrible night sweats-- GREAT!

At my last follow-up visit with my neurologist at Vandy, I told her that I still feel so tired and that many days I'm just unable to do anything but lie in bed. Her response: that's typical with dsyautonomia and POTS and the best thing doctor's can do is to help maintain a healthy BP. Great! I've always had a normal BP-- I'm orthostatic hypertensive. So, she's basically telling me there's nothing more she can really do for me other than increase fluids, increase salt, and prescribe mestinon. Don't get me wrong, I'm better than I was before getting diagnosed. However, I'm still very, very sick and I rarely get out of the house for socializing. My life is still significantly affected by this disorder and to know that it may never get much better is depressing. I just try to make to most of the days that I do feel good. I shop 'til I drop and meet with those friends who can on a moment notice. It's not the ideal life, but it is better than no life at all!

The heat is killing me here in Kentucky! My husband is landscaping our yard and we went looking at bushes on Saturday afternoon. Since then, my heart rate skyrockets if I'm even in a sitting position and it takes forever for my hr to calm down when I lie down. I just feel that I'm breathing hard all the time. As a result, I am extremely tired and sleeping a lot. Last night, I slept for 17 straight hours and woke up only because my husband was afraid I was in a coma! I, too, have felt nauseous and taking my medications have been a struggle. When will this heat end!!

I drive 3 hours one way to Vandy to see a neurologist there. It's worth the drive and the peace of mind to know that I'm getting the best of care from experts in the field. Good Luck in finding a competent doctor. Surely there is one within driving distance of your home. Where do you live?

Well,on the positive side, the diagnosis could have been a lot worse. At least now you know what you are dealing with. You can move forward into the future without wondering "what do I have." We are all here for whatever support you need!

I have similiar pain and have many of a night tossing and turning in discomfort. I don't know if the pain is due to my fibromyalgia or small fiber neuropathy with the leg issues; however, I have this pain day and night. I usually take Tramadol for the pain in the legs, but recently I tried a topical prescription ointment called Voltaren Gel that I used for my bursitis in my shoulder. It worked great!! It "numbed" the area immediately and allowed me to fall asleep! When I'm in pain, this is the first thing I reach for. I also just purchased a wrap heating pad that has been fantastic. I wanted one that wrapped around my legs and/or ankles that could be tightened with velcro. Plus, it was imperative that I have one that got hot fast, would reach higher temperatures and maintain those temperatures. I researched several brands and decided upon the Thermophore MaxHeat Muff. The first time I used it, my leg felt instantly better. Unfortunatley, it is not cheap-- $50.00. Plus, I'm going to have to buy a second one so I can have both legs treated with moist heat therapy at once. My birthday is in early June. Guess, what I'm asking for!!

I've been on Singulair for over 10 years now. It has been great for my allergies. After I had sinus surgery, I tried going off Singulair, but I still has some nasal congestion so I went back on it. If though Singulair is expensive, even with prescription insurance, I wouldn't dare stop the medication!

I understand exactly how you feel! I am a huge Kentucky Wildcats fan and my eldest daughter, who lives 1200 miles from me, begged me to go to the Final Four in Houston. I had been quite ill the 2 months prior to the game with gastroparesis, POTS, and daily pain in the upper abdomen. At first, I didn't want to go, but then I thought, heck, I can be sick at home or sick in Houston spending time with my daughter and watching my beloved Wildcats in the Final Four. It wasn't easy. I was sick everyday and yes, I cried a couple of times when we had to rearrange our plans because of my health. The day after I got home from the trip, I slept 15 straight hours. Would I do it again-- heck yeah! I was a difficult trip, but at least I went and didn't miss out on things I would have done pre-POTS. Yes, there were many, many times when I just wanted to lay down and be sick, but with a little help from a lot of medication, I made it and along the way, I made a lot of memories. Unfortunately, one memory I wish I could forget was UK's loss to UConn! The one thing I've learned with POTS and vacations is that the vacation will be impacted by POTS. The bad news is that you don't know when or where, but a POTS relapse probably will happen. When I go on vacation, I just try to act smart by following a regiment will promote better POTS health, through medications, limited exercise, rest, etc... However, as we all know, a POTS relapse can occur regardless what one does. Thus, I make sure our vacation can be flexible. Last year, I slept in the car while my husband and daughter took a 3 mile hike. I use to enjoy long hikes; now, I can't say I even miss them since I feel so tired. Last year when we went to Arches National Park, I stayed in the motel while the family hiked during the day. I hiked in the evening and bought a camping stool that I could sit on whenever I got out of breath. Everyone had a great time! I refuse to allow POTS to stop my vacations. They'll just be a little different. Maybe not as active, with a few more breaks, but still a vacation!

I've always had low pressure, but my father did as well so I attributed the low BP to hereditary factors. Whenever I would take a hot bath, I always began dizzy and my heart would race, but, once again, I just thought it was due to my low pressure. Of course for years prior to POTS and Chronic Fatigue, I was always fatigued and never felt well.

Just reread your post. My GI is one of the leading specialist in gastroparesis in the nation. You said that you are taking erythomyocin! Yikes! My neruologist put me on this medicine and when my GI found out about it ( I called him because I was having MAJOR side effects), it nearly hit the roof. He said that people with healthy stomachs has side effects with erthromycin and, of course, those with GP would have major problems. Many GI's treat GP with Reglan; however, many patients report lots of side effects from this medication. Dr. Wo prescribed Domperidone for me because there are very little side effects related to the medicine. The BIG problem with this medicine is that it is not FDA approved and only certain pharmacies across the US compound the medication which makes it expensive. It is also available in Canada as Motillium for a much reduced price. However, when compared to the side effects of Reglan, I will gladly pay a few extra dollars for Domperidone! So, as you can see there are definitely some alternative in treatment for you that can improve your health. You should either discuss these alternatives with your current GP or call a gastroenterologist soon. Bev

I am so sorry that you have been diagnosed with gastroparesis. For the past seven years, I have struggled with gastroparesis and I understand how miserable you feel. My first suggestion is to make an appointment with a gastroenterologist who is experienced with treating gastroparesis. Call your local AMA to get a recommendation. If you live near a large university, call their medical center and inquire if one of their GI's specialize in gastroparesis. GP's know very little about the disorder and I would much rather have a specialist monitoring my condition. Second, you need to follow a gastroparesis diet plan. Basically, there are many foods that people with gastroparesis can and cannot tolerate. You can access an explanation of the gastroparesis diet plan here http://www.rd411.com/index.php?option=com_content&view=article&id=471:gastroparesis:-guidelines,-tips-and-sample-meal-plan&catid=89:allergies,-intolerances-and-special-diets&Itemid=383. If this link doesn't work, just google: gastroparesis diet plan. When you said that you were drinking milkshakes, the first thing I thought was: no wonder she is vomiting. No one even counseled you on your diet, did they? When you are in a flare and vomiting, it is best if you drink clear liquids and eat broth( that is good for people with POTS because broth is loaded with salt). Basically, there are, I believe, 4 progressive steps in eating: starting out with clear liquids. Once you can tolerate foods/drinks at Step 1, you then introduce foods in Step 2, etc...soft foods, saltine crackers, etc... However, there are some foods that GPer's avoid, uncooked fruit and vegetables, fiber, high fat foods to name a few. If you feel nauseous, call your doctor and ask for some nausea medication, like phenegran or Zofran. It definitely makes the nausea tolerable and will stop the vomiting so you won't become dehydrated. I couldn't live without my nausea medication. Nausea and gastroparesis go hand and hand. Beware though phenegren will make you sleepy, but sometimes I would rather sleep than be nauseated. As for taking your POTS medication when your nauseated, I struggle with that as well. That's why you need the nausea meds. However, until you get the nausea meds, try eating some saltine crackers or toast and then taking your meds. When I sick, it has sometimes taken me over 2 hours to take all my morning meds. It's odd that your doctor told you to decrease your Domperidone. Normally, the more severe the gastroparesis, the higher the dosage. At my sickest, I took 3 pills of Domperidone 4 times daily!! I now take 2 pills 3 times daily. The symptoms of gastroparesis tend to wax and wane. I must say, I was my sickest the first 2- 3 years and then I started having periods that the nausea wasn't as severe or as often. The beginning of the disorder is definitely the worse, but with medication, most people do improve, though probably not as quickly as they want. The key is to follow the GP diet and to keep a good attitude! Let me know if you have any other questions! Bev Ray

Based on the QSART, I do have SFN, but I really don't suffer from tingling pain in my feet/hands much. However,I do suffer from terrible pain in both ankles to the point that they feel extremely swollen, though they aren't. Even 2 50mg of Tramadol doesn't ease the pain and I'm often up most of the night tossing and turning because I can't get comfortable. I do suffer from moderate/severe fibromyalgia as well. Since I don't suffer from pain in my feet, do you think this pain in my ankles is due to the fibromyalgia and not small fiber neuropathy? Do any of you use a topical patch for pain? Thanks, Bev Ray

Jan, I have to respond to a few things that you wrote. First, I think you have misinterpreted my use of "retarded." My degree in Counseling is actually in School Counseling. I often worked with School Psyschologist who administered IQ tests. The clinical use of "retardation or retarded" is used to describe those whose IQ is below 70. In my brother-in law's case, his IQ falls within the low mentally retardation range. I did not use the term "retarded" as a term of degradation. Throughout my 30 years of teaching, the term to describe a below average IQ has changed nearly every decade. I used the term as a clinical term and I'm sorry if you found it demeaning. I could have used intellectually challenged, intellectually disabled, etc... Probably ten years from now, those terms will be offensive as well and a new term will be the "better" term. I agree, though, I don't like the word "retarded" as well as others, but all these terms still mean the same thing, a below average IQ. I truly love my husband's brother as much as my own; however, what I resent is the problems in our marriage that the situation that the guardianship and lack of help from other family members have caused. My husband is the most passive aggressive person I know and he harbors extreme anger towards his entire family due to their lack of relationship to their brother. His animosity is so great that he has not had any contact with any of his family members for 4 years. Yet, he has refused to seek counseling or ever talk to his family about the pressures that the guardianship has caused. When the pressure becomes to great, his anger and tension is often taken out on me in a non-violent manner. His family situation has almost led to divorce several times during our 30 year marriage. However, I do love him because he is a good, caring man. One of the reasons I do love him is because of the way he cares for his disabled brother. Yet, selfish or not, I do need him now and I feel that his 3 other healthy siblings should help with their disabled family member. Was I wrong to contact them behind his back? Yes. But he would have never, ever let me write that email. How else was I to get help? He spends hours doing things for his brother, but he does very little to help me out around the house. I've already apologized and I explained why I did it--because he wouldn't. Right now I can't be second fiddle to his brother anymore. I'm just too sick. I guess I am letting this illness gain control over me. Guess I need some counseling to get a grip on my life. I surely don't like who I've become. I can't control my health, but I can control the person I become. Thanks for listening. Bev

I've been sick for the past 18 years, first with Chronic Fatigue, then 7 years ago with moderate Gastroparesis, last October with dysautonomia and POTS and recently I've been diagnosed with daily moderate/severe pain in the upper epigastric region of unknown cause. Through all of the illnesses, I have had a positive attitude and remain cherry and happy. However, over the past 3 months, I feel a tension in the back of my head and my temples. Sometimes, I feel like I'm going to explode! Though, overall I'm still cherry, my daughters tell me that I can be somewhat confrontational, impulsive and yes, childish. I have my Master's Degree in Counseling and I realize that many of the things that I've been doing are wrong, yet I can't help myself. My husband has been the guardian for hhis retarded brother for 25 years. His 3 healthy siblings do nothing to help. So, he is now caring for 2 disabled loved ones. On Sunday, without consulting my husband, I sent a not so nice email to each of his siblings pleading for their help with their disabled sibling. I knew that was the wrong thing to do, but my head was ready to explode and I couldn't stop myself. Of course, when I told my husband, he was furious, but I don't care. I need him to help me too. I'm becoming a person that I don't want to be. Is it this illness? a reaction to my illness-- I am homebound 70% of the time. Do I need counseling? But how can I go to counseling when I don't know if I'm going to be well enough to dress myself to make the appointment? Does anyone else get these feelings in the back of the head? I'm on Cymbalta twice daily, so if it's anxiety, this medication should help. Right now, I just feel that I'm spinning out of control and I don't know how to stop! Any advice would help! Thanks BEV

Yes, I've noticed that phenomena as well. I can't describe it either. Sometimes I get multiple flashes. It doesn't seem to affect my eyesight though. I have no idea shy it happens.