mwise

Very interesting article. I feel having my gallbladder removed in 2005 was the underlying cause of my dysautonomia. Prior to that I lived a normal life and once it was removed, I was never the same after that. I think they should do a study on us with gallbladders removed and dysautonomia.

Hi Maia, So happy everything went as well as expected and you got some answers. Sounds like Dr. Novak will have you moving hopefullly in the right direction. I am curious to know what medication he would like to try. I am also anxious to hear what treatment plan he will recommend for you. Keep us posted

Hi, I take Levoxyl for Hypothryoidism and so far my labs are ok. I am only on a small dose. I get checked yearly. I am suspicious that Dysautonomia is affecting Angeliq-Hormone for Menapause. I recently had a d/c to remove polps d/t spotting monthly on the hormone. I am still spotting about every 3 weeks on the hormone. I am keeping an eye on things and may have to call my gyn soon about this. You may want to give your doctor a call. He may want to adjust or change the medication & d/or dose.

Hi Ladies, The information on TTT is from the Mayo Clinic website. Check it out-Results. BTW-I didn't faint either with my TTT. My BP dropped so low as they began to raise me up on the table at Cleveland Clinic that it was proof enough for my diagnosis.

I noticed also that I have good days right before the seasons start changing. I don't do well in heat. Summer was **** on me. The cooler temperatures help. I had 3 good weeks, than wham this past week with the temperatures really dropping, I am feeling horrible. I did notice this weekend with the temperatures slightly back up, I am feeling a little better or it is rest, fluids, salt, etc....doing the trick or my once a month bad week is happening? Guess I will continue to track it

Hi. For me it depends on the day too like Maia. I have good & bad days. I take it one day at a time. I am able to work, no exercize. I have a desk job. I can usually walk though for short distances and don't overdo it. Sometimes I have to use my rollator or wheel chair depending on how I feel. I do steps with limits. If I am not feeling well generally, I am pretty much house, chair or couch bound-the worse the heat etc...the more i just need to rest. When I am feeling well, i have to be careful not to over do it or I am exhausted the next day. On good days, i can run a couple errands, shop & socialize outside the house for a couple of hours or so. I have to be able to sit whenever i need to and i usually need a cart to lean on while walking around in stores. I am best in the morning, but by afternoon & evening I usually need to be sitting & resting. I can go out and socialize if i can sit and don't need to eat much, and if its not hot out. I can not stand still or in lines for very long. Lifting things is difficult and stairs wear me out. I stop on steps & hold on to the railing to get up them. Down is much better. I also generally have to give myself a couple hours to do nothing but rest after i eat-and usually can't eat much during the day because of this. I eat more in the evening with the help of Domperidone & small meals. I have to continue to stay hydrated especially with sugar/salt water mixture night & day to help keep me keep going along with everything listed in my signature line. I say allot of prayers and are thankful for this forum, friends, family & co-workers that understand. This is really a challenging disease and I pray they find a cure for all of us

Hi Maia, Information on Quantitative Sudomotor Axon Reflex Test (QSART) The quantitative sudomotor axon reflex test (QSART) is used to assess the small nerve fibers, which are linked to the sweat glands. QSART is used to diagnose: Painful, small fiber neuropathy when nerve conduction test results are normalDisturbances of the autonomic nervous system, which controls the sweat glands, heart, digestive system, other organs, and blood pressureComplex pain disordersThe test has three parts and measures resting skin temperature, resting sweat output, and stimulated sweat output. Measurements are typically taken on arms, legs or both. A small plastic cup is placed on the skin and the temperature and amounts of sweat under the skin are measured. To stimulate sweat a chemical is delivered electrically through the skin to a sweat gland, but the patient will only feel warmth. A computer is used to analyze the data to determine how well the nerves and sweat glands are functioning. The patient will experience little or no discomfort, but the test could take two or three hours to complete. Tilt Table Test The results of a tilt table test are based on whether or not you faint during the test. If you faint during the tilt table test and you don't have other symptoms of a heart problem, it may indicate either vasovagal syncope or orthostatic hypotension. But you may need additional tests to determine the specific diagnosis.If you faint during the tilt table test and you have other symptoms of a heart problem, or if your doctor suspects that a heart problem is causing the fainting, you may require additional cardiac testing and evaluation to determine a diagnosis.If you don't faint during the tilt table test, you may need additional tests and evaluations to find the cause of your fainting.Hope this helps. I would have the tests done to make sure there are no other underlying causes. It can also help your doctor with the course of your treatment. Good luck

When I was 1st diagnosed, I was placed on Florinef .1mg daily in the hospital. No one really explained to me how it would help and what to expect. I couldn't tell if it was helping at all during my hospitalization because I was so sick. When I was discharged home on the same dose, I noticed after I took it, I would get severe headaches, and experience anxiety, depression, insomnia, and extreme weakness to where I felt I was getting worse and basically stopped the med. I had been on it for about 3 weeks. The side effects went away, but I still was basically couch, chair & bed bound with low bp, weakness & dropping to the floor every time I would stand up. It wasn't until I was started on Midodrine, Mestinon, Domperidone & homeopathic meds that I began to feel better and walk again. Like everyone else, I would give it a try. It may work for you, but also as others have said, you may have to adjust the dosage. You have to find what works for you. If it can get you to feel better, than it is worth it. Good luck

Hi! How did you get your diagnoses? What tests were done to confirm them? My diagnosis of Orthostatic Hypotension Dysautonomia & Autonomic Neuropathy was based upon the findings of the tilt table test which I failed miserably and an abnormal QSART along with some abnormal lab work findings. I have had further testing-Fat pad biopsy and full body pet scan to rule out underlying causes, which after everything was said and done-idopathic/autoimmue cause-flu, which I still think it goes back to when I had my gall bladder out in 2005, which I never really bounced back from the removal. The doctor(s) may want you to have them to confirm an underlying cause of your POTS, etc....Good luck

Thank you Mistraci & Songcanary for listening and the hugs. I really do feel like I am on an emotional roller coaster let alone the physical roller coaster with this disease. I am just so glad to have you all hear who know this disease.

I guess I need to do some venting with this disease. I had 3 really good weeks of feeling like I was turning a corner with this disease. I was doing extra little things around the house along with short walks at work for the 1st time since I was diagnosed in Dec. 2010. I thought maybe just maybe I was beating it. Well wham-the weakness, low bp, buzzing in head & ears & yes dropping to the floor constantly on top of having intestinal flu started this week. Grrrrrr. Each day for the past 5 days, the symptoms have gotten worse. Couch & bed bound now. I know my neurologist said I will have some bad days each month, and I have but more symptomatic this time. I keep praying for healing and shed allot of tears with this. I know life has its' ups and downs, but it seem like I have more downs than ups especially with having this disease. I am sending out hugs to all of you that suffer with Dysautonomia and allot of other diseases with it and hope to get some back. I love all you and am thankful that you are hear to listen

I got the flu real bad in Feb-March of 2010 and spiraled out of control til diagnosed in December 2010. I really believe it all started in Nov. 2005 when I had my gallbladder out. I never was right after that. I felt fatigued all the time, had IBS and still had stomach discomfort. I managed to have some normal life from 05 until the last flu in 010. It finally caught up with me and with a big passing out at work & being transferred to the hospital to finally get the diagnosis of OH Dysautonomia & Autonomic Neuropathy.

Hi Bear's Mom, You are not alone with not having a diagnosis of POTS. I have Orthostatic Hypotension Dysautonomia (Autonomic Neuropathy) and wasn't diagnosed with POTS. I have very low BPs with blood pooling in my stomach and lower extremeties. I am doing allot of similar treatments and therapies as with a POTS Diagnosis. I was diagnosed at Cleveland Clinic and follow with a Neurologist there on a routine basis. You are welcome to PM or email me anytime

I take Mestinon 60mg 3xday and haven't had any side effects from it. It helped me to start walking and with motility. I encourage you to give it a try.

My heart goes out to you as I know this is a very difficult decision to make for you. I was diagnosed with Orthostatic Hypotension Dysautonomia (Autonomic Neuropathy) in December 2010. I was off 21/2 months before I was able to return to work-full time. I am nurse of 35+years but have an administrative/desk job in hospice/homecare. I was on short-term disability which was part of my benefit package. I didn't know if I was going to get back to work and was preparing for disability. There is a lot of good information on this forum as to how to apply for disability. You mentioned that the medications (Beta Blocker & Florinef) you were and have been taking aren't working well. Maybe you need to let your doctor know and work with him/her to find medications that may work and help get you back on your feet. I could not tolerate Florinef, but thanks to Midodrine, Mestinon, and a good diet & treatment regimen, I was able to get back on my feet-walk again and do little things around the house which lead me to return to work. I am still working-full time.

I run on the low side, but have been normal on occasion. I run around as high as 90-100/70s to 60/40 & lower when I am ready drop to the floor especially when I stand even less than a minute. Standing for 3 minutes 70/50.

I would give the Norpace a try if it did help you in the past. Also Midodrine can be cut in half. Maybe you need to cut your current dose of 2.5mg to 1.25mg. There is a line on the pill which means it can be cut in half. A few other suggestions may be support hose 30-40mmhg of pressure, salt tablets and fluids & foods high in Sodium.

I agree with Songcanary. Avoid solid foods. Drink sport drinks with electrolytes to keep you hydrated and sip it over crushed ice or through a straw. Also if you can get your hands on a bottle of Cola Cola Syrup not just the pop/soda and sip it over crushed ice, it will help slow things down and settle your stomach. Rest is also important. Once you are able to take in solids, start with the so called "brat" diet-bananas, white rice, dry plain toast or soda crackers. Hope you feel better soon.

I am a registered nurse for over 35+ years. I still practice in hospice and home care-more administration/desk job. I am currently working. I was diagnosed in December 2010 with Dysautonomia. I really believe my symptoms started after I had Gall Bladder Surgery in 2005. I had a really bad bout with flu in Feb-March 2010 that began my down hill spiral which lead to me passing out at work November 29th and being carted off to a Cleveland hospital. Cleveland Clinic diagnosed me. I was off of work for about 21/2months and didn't know if I would ever get back to work. I was preparing for disability. I can honestly say with the help of God (Jesus Christ)-a lot of prayer and love from family, friends and colleagues, my Neurologist-Dr. Shields at Cleveland Clinic getting me on Midodrine, Mestinon and a proper treatment regimen, a good dietician-Beth @ Cleveland Clinic finding me the right diet-foods and fluids and this blessed and great forum (I love you all DINET family), I was able to return work and continue to work. The summer with the heat was a little rough on me. I also needed to have my Midodrine upped, but I continue to have some quality of life with work and doing little things in & out of the house.

Hi Jen, I take Midodrine 7.5mg 3xday and prn if I need (7am-12pm-5pm) I use and move the times based upon how late I am going to be up and out of the house. I also take Mestinon 60mg 3xday (9am-3pm-9pm) I adjust the times too. I take it no matter what I am doing laying or sitting down to walking and doing things. I get all the side effects from the Midodrine-itchy scalp/head, goosebumps, feel cold, parathesia and urinary frequency. The benefits of being able to walk, work and do little things out way the side effects. Maybe the dose you are taking is too much and causing the Migraines. I initially started on Midodrine 5mg, but after about 3 months, I needed to have it bumped to 7.5mg. Right now being on 7.5mg for about a month is working fine. You didn't say what dose and may want to start on a lower dose than what is prescribed. Generic brands make a difference too. I went from the Mylan Brand to Global and am back on the Mylan brand because it works better. Good luck and I hope you find what works for you.

Hi Ollie, I work dayturn and set my clock to get up earlier than scheduled. For instance, 9 am is my start time, I get up between 6am and 6:30am. I start drinking salt/sugar water (salt load), coffee and begin taking my medications with Midodrine taken around 7am. I go really slow with getting ready for work. I sit and lay down in 10-15 minute increments to rest between getting ready. I bathe/shower in stages-alittle at a time. I have a shower chair and sprayer in the tub. I also sit down to brush my teeth, put my make-up on and get dressed. I usually get my thigh high or panty support hose (30-40mmhg) before I finish dressing. This helps with my blood pressure. Once I am ready, I pack a lunch as I can't eat foods high in fat. I sit down to do that too. I try to spend any extra time resting before I leave for work. I even try to get in one more cup of coffee Lol. Caffeine helps me too. I can tell when my medication begins to work and usually by the time I reach work, I am not experiencing any symptoms of weakness, head feeling full, palpitations, etc....This is what I experience every morning. Good luck and keep us posted.

Hi Sarah4, I take Mestinon and Midodrine. I have had no side effects or problems taking Mestinon. I take 60mg 3xday (9am-3pm-9pm) and Midodrine 7.5mg 3xday (7am-12pm-5pm) and adjust them accordingly if I am going to be out & up late in the evening. I also will take an extra Midodrine dose sometimes especially when it was extremely hot out to help keep me upright and walking. I get the usual Midodrine side effects of itchy head, skin crawling & tingling, feeling cold-goose bumps and yes urinary frequency. The benefits of walking out way the side effects. I have noticed since it has been cooler-70s in Ohio that I am feeling better. I definitely can't tolerate the 80s. I get so much weaker and tired quicker. I feel both medications seem to wear off faster when it is hot out. I do try to hydrate more with salt products which does help. BTW-I had asked my Neurologist what would happen if I would & could build a tolerance to Midodrine? He shared that he has had patients on Midodrine 20mg 3-4xday (Total of 60mg-80mg a day). Good luck

I take Midodrine 7.5mg 3 times a day (7am-12pm-5pm) as ordered by my neurologist at Cleveland Clinic in Ohio. I adjust the times based upon the activities I do which includes a lot of sitting especially during the day. I have a desk job so I sit about 6-7 hours a day. I also sit and lay down on the couch in the evenings. I have taken extra doses as needed especially in the evening if I am going to be up and out late. My neurologist said it was ok to take the extra doses if needed. I experience side effects that my neurologist said to expect and are normal: itchy head, goose bumps, skin crawling, feeling cold, parathesia and urinary frequency/urgency. The benefits of being able to walk and do little daily activities out way the side effects. You will find on this forum that every one takes it differently. You may need to take it how ever it meets your needs. Hope this helps.

Welcome to the best forum family who will give you a lot of support and love. There is so much information on this site and the sharing by others of what works and doesn't work. It helped educate not only my family but close friends too. They were much more understanding after reading the information and some of the posts I shared with them. Have you thought of having your Florinef increased or trying another Medication? I wasn't able to take Florinef, but Midodrine got me walking and being able to do little things around the house again. I was bed, couch & chair bound before Midodrine. I even returned to my job, which is mostly a sit down job working at a desk. I do have a wheelchair and a Rollator Walker (a rolling walker with a seat). I use them when I am going on long excursions such as to the mall, outings and feeling fatigued which is upon rising in the morning and usually in the evening. I do go to stores such as WalMart, Giant Eagle (I live in Ohio) and stores that have motorized scooters with carts. It is fun driving them in the stores. Some of the Malls have them too. I do have 2 teenage daughters and they help push me in my wheel chair when I need it. Their friends are helpful too. They think it is cooI pushing me. I really think they like me to hold what they buy! LOL I try to use my Rollator Walker when I am feeling my best. It has a basket under the seat and if I feel tired, I sit down and rest. I also spend time studying the stores layouts-finding spots to sit down. I have even called certain stores to find out what type of accommendations are available especially seating, restrooms and emergency preparedness. I was fortunate to get my wheelchair from another family member not needing it. Try Craig's List, 2nd hand stores or word of mouth as you may be able to get one inexpensive and or possibly free. Good luck and again welcome