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Thanks for all the responses. I didn't realize I was on such a low dose. I think I will contact the neurologist who diagnosed me with AN and POTS and get her opinion if I need a higher dose of Topamax. I just some relief! Bev

I am taking two 50mg Topamax daily for migraine prevention and I am still getting in excess of nine migraines a month. I tried Atentol for more than a year and it wasn't as effective as the Topamax. When I feel a migraine beginning, I first try to avert it with Excedrine Migraine then if that doesn't help, I take one of my prescription migraine meds, Relpax. Right now, I only have a prescription for 9 Relpax per month, but I think I'm going to have to ask my doctor to write a prescription for 12, the maximum by insurance allows. My migraines can be so severe that I often have to take two daily and I'm always scared that by the end of the month I'll run out. I don't know what I would do without my prescription migraine medication! I was wondering if taking the preventive medication is even worthwhile with dysautonomia. Of course, I don't know how many migraines I would be having if I stopped the Topamx, but I can't imagine it could be worse than what I have now. Has anyone else been prescribed a migraine preventive medication by their neurologist for their migraines caused by their autonomic neuropathy. Mine was prescribed by my internist prior to AN diagnosis. Thanks, Bev Ray

1/2 English and 1/2 Scottish

I am allergic to cortisone, so when I discovered that the generic for Florinef was Fludrocortisone, I asked the pharmacist if I should take it. She emphatically told me NO. When I took cortisone, I got a severe rash on my chest along with some hives. So, the symptoms you are experiencing may be that you are allergic to the cortisone in the medicine. I definitely would call your doctor and ask for an alternative medication. Good Luck, Bev Ray

I can emphathize with you about the unrelenting pain and how debilating it is. The constant body aches drive me crazy! I take 2 60mg capsules of Cymbalta for moderate/severe fibromyalgia and I've just been diagnosed with small fiber neuropathy and I've been told Cymbalta helps with that as well. Yet there are days, many days, that I have severe pain in my legs, back, arms and neck. I've tried heating pads too,but it doesn't help. The only thing that has helped is Tramadol. I start out with one pill, if after 30-40 minutes I'm still in pain (which I generally am), I take another, and if another 30 minutes pass and I'm still in pain, I take another. On really bad days, I normally have to take 3 Tramadols to get relief. My GP is the doctor who prescribes by Tramadol. He did so originally for my fibromyalgia pain. He has told me that I can take up to 400mg of Tramadol daily, but no more. Each tablet of Tramadol is 50mg. The good thing about Tramadol, the generic for Ultram, is that isn't a narcotic so it's not addictive. On the downside, if you take too many, they may make you constipated, but Miralax can alleve that problem. Beware that Tramadol takes about 30-40 minutes to "kick in"-- it's not like a narcotic pain pill that takes effect rather quickly. Ask your doctor for a prescription of Tramadol-- they saved my sanity! Good Luck! Bev Ray

I just completed a wide range of tests at Vandy and I would recommend their facility and physicians wholeheartedly. My neurologist was very thorough, listened attentively to all of my symptoms, and ran appropriate tests based upon my symptoms. Overall, I was pleasantly surprised at how well the facility was run. Rarely were appointments extremely delayed and their billing department is equally efficient. When I was referred to Vandy, my only diagnosis was Autonomic Neuropathy, so I was shocked when I received the diagnosis of POTS. On your first visit to Vandy, you undergo a variety of autonomic tests. Based upon the result of these tests, the neurologist may order a battery of blood tests and the QSART- a sweat test. The results of the QSARTrevealed that I also suffer from small fiber neuropathy. In addition, I demonstrated some insensivity in my feet and reported some stumbling, so the neurologist also scheduled further testing for large fiber neuropathy, which if a diagnosis could be made it could have identified the reason for my small fiber neuropathy which in turn, the cause for my POTS. Luckily, I tested negative for large fiber neuropathy, so the cause of my automonic neuropathy and POTS is idiopathic, or unknown. However, I would have never had known that unless I had undergone these more indepth tests.For you; howevever, one of these my identify the cause of your POTS which will help in the treatment of your disorder. As for my treatment plan, I, too, am sorta in the experimental phase. Immediately after being diagnosed with POTS, I was prescribed 3-6 salt tablets daily to improve blood pooling and, to my surprise, it did help. On my last visit with the neurologist, she wanted to put me on Florinef, but I'm allergic to cortisone. Then, she prescribed a medication primarily for an entirely different disorder( myasthinia gravis). I questioned how it would help my POTS, but the neurologist said it helps by lowering the heart rate so when my heart rate does go up, my symptoms should lessen. Needless to say, I was skepical, but it's working! I've been on it over a week now and I can walk through the store without getting out of breath!! I can shop again!! It's worth going to Vandy to get a full evaluation so you know exactly what you have and what you don't have-- the neurologis who performed my test for large fiber neuropathy said I had "really wierd arches" in my feet and that probably what's causing my stumbling. Who would have thought that! At least you'll know that you have done everything that can to get the best treatment for this disorder. Good Luck!

I just had the Nerve Conduction test performed about a month ago and the results were negative-- I had no large fiber neuropathy. The test was ordered because on subjective testing I demonstrated mild sensitivity problems on my feet and I noted that I occasionally stumbled when walking. Luckily though these problems were not due to large fiber neuropathy. ***I did learn from the neurologist during another test, an EMG on the same day, that I had "wierd" arches. When I researched this, I believe that I have high arches and that is why I'm stumbling a lot! I'm glad my problem is due to high arches and not large fiber neuropathy that's for sure!

I was diagnosed with fibromyalgia about 10 years ago and took a low dose of Tramadol to ease the body aches that accompanied it. Since being diagnosed with POTS, the severity and the frequency of my body aches have increased substantially. There are days that I just lay in bed in pain, even without moving, deep muscular pain. I just went to my internist to ask for an increase in my pain medicine, Tramadol. He told me I could take up to 400mg. daily. I was only taking 100mg, so I'm thankful for the increase in doseage. Luckily, I haven't had to take the maximum dose yet. Hopefully, it will help. You may want to go to your doctor and ask for a prescription for Ultram or its generic Tramadol. These medications are not narcotics; therefore, a doctor may be more willing to prescribe it. Unfortunately, I have found that Tramadol takes much longer to go into effect and may not be as strong a narcotic, but it's better than over the counter medications. Good Luck! Bev

Yes, I was diagnosed with small fiber neuropathy through QSART testing. Based on that testing, I have it primarily in my feet and legs. My next appointment with the neurologist is Oct.7 and I plan to ask her if my SFN is due to POTS, Autonomic Neuropathy, or another separate issue. I also want to know if SFN is permanent and progressive. uckily, I haven't suffered too much from SFN, but I think it's because I'm on a high dose of Cymbalta for my fibromyalgia. From research on the internet, I learned that SFN can be treated by both Lyrica and Cymbalta, both of which are prescribed to treat Cymbalta as well. I'll share any info I learn from the neruologist about SFN and its effect on the body.

During the past week, I have slept 17+ hours for four of those days. I tend to get up for about 2 hours go back to bed for 6-7 hours, get up for 3-5 hours, and then go to bed for the night. I always sleep soundly regardless how many hours I sleep. Plus, I always have a hard time waking up regardless if I've slept 3 hours or 17 hours. In addition to POTS, I also suffer from Chronic Fatigue Syndrome and fibromyalgia so I don't know if one or all of these disorders are contributing to my hypersomnia. I mentioned the hypersomnia and difficulty awakening to my neurologist, but she had no explanation for its occurrence or methods to combat it. Since being diagnosed with autonomic neuropathy, this is the first time that I have slept this much in such a short time. It is worrisome, though since joining this support group, I realize it is not all that uncommon. Luckily, I am retired and have no children at home. I don't know what I would do if I had to work or take care of others. Just trying to minimally take care of myself is exhausting enough! The next appointment with my neurologist is Oct. 7th. I plan to discuss this symptom with her again and will share any info that is helpful. Bev Ray

I just had the test last week. The test was performed to determine if I definitively had large fiber neuropathy, since I was previously diagnosed just on subjective measures. Luckily, my test results came back NORMAL so I don't have large fiber neuropathy, which often can be progressive. The results were provided immediately following the test. Even though the test did not yield any results that will help in my treatment plan, it did serve to eliminate a lot of other disorders that could have been caused many of my symptoms. For that, I am grateful. Good Luck on your test!! Bev Ray

Boy,I have you all beat! I tend to bathe maybe 3x weekly-- I don't sweat much,do very little activity, and it wipes it out. Washing my hair is a major event, so I do it as infrequently as I can-- I sound like the Big Bad Wolf from the Three Little Pigs story huffing and puffing after washing my hair. I just don't want to put myself through that. Luckily, I've found that my hair has adjusted to not being washed like it use to -- every other day--- and now can go 4-6 days before I absolutely have to wash it. I, too, will put on make-up when I go out. If I don't, I'm afraid I'll scare someone. However, many times I don't add the eyeliner or eyeshadow if I'm really tired. I've also resorted to just pulling my hair back in a pony tail, which I never did prior to getting sick. Lounge wear is my second skin! I once asked my husband if he minded me lounging around in my pjs and not wearing make-up when I felt poorly. He said no, but he did request that I brush my hair! How sad! As for going out and socializing, that's a no-go. I'm well enough maybe 1 day out of 10 to have the energy to leave the house. I've become a recluse, but the thought of getting ready and socializing for hours is too overwhelming. This from a woman who use to be a social butterfly. Hanging in there, Bev

I like the suggestion about taking a pain pill about 20 minutes prior to the test!! My legs are extremely sensitive to pain. Before I knew I had small/large fiber neruropathy, I had gone for a pedicure. The manicurist gave a deep massage for both legs and feet. The pain was so intense, I was literally biting my lower lip! When the pedicure finally was over, I could barely walk! So, I fear the needle insertion into the muscle definitely will cause some pain! I will definitely take some Tramadol before the test. Thanks for the information! Bev

After testing positive for both small fiber and large fiber neuropathy on QSART testing, I am now scheduled for EMG Testing for both the Nerve Conduction Study and the Needle EMG. The neurologist warned me that the test is not the most pleasant of tests and that minor pain may be involved. Any information that can be shared will be greatly appreciated. Thanks, Bev Ray

I know a lot of you suffer from small fiber neuropathy, but I haven't seen many complaining of large fiber neuropathy. What's strange is that I'm not experiencing many of the typical small fiber neuropathy symptoms, such as the "needles and pins" feelings in my feet. However, I have had pain in my legs for over a year now. If I run my finger down my legs, it feels like one continuous bruise. I always thought it was severe fibromyalgia, though I knew that my fibro had never felt like this. What are some of the symptoms that those who suffer with large fiber neuropathy have? Thanks, Bev Ray

About 5 days ago, I couldn't walk through my house without getting out of breath and my heart rate going high. After putting on my make-up, I was totally out of breath and I could tell my heart rate was high-- it was 127-- just from putting on my make-up! Like you, I was tired for most of the day, so I just laid around and drank a lot of Gatorade. I must say that when I drink Gatorade that I tend to feel better. Now the weird part. For two days, I was homebound with severe shortness of breath, high heart rates *** minimal walking etc... I was exhausted and felt awful for both days. The very next day, I woke up feeling GREAT!! That whole day I walked and walked and walked and walked and not once did my heart rate go up or did I get out of breath! I went shopping for 4 hours and felt great and never had one POTS symptom! Don't know why. Didn't do anything different the night before or the day of... It just happened and I took full advantage of my day of good health. My advice on bad days is to listen to your body. Rest when to have to, sleep if you need it. Try Gatorade, or the lower caloric version G2. I think the electrolytes in Gatorade help me more than other liquids. Take Care of Yourself! Bev

Hi Meri! I'm just now undergoing a full assessment for autonomic neuropathy at Vandy. I was referred to Vandy by my GI due to some wierd symptoms such as severe shortness of breath when walking, obstipated constipation, hypersomnia, severe migraines and a host of other symptoms. When I was diagnosed with AN in Feb. of 2009, I had a full battery of cardio tests and I did not have POTS at that time. Surprisingly, when I went to Vandy on June 30 2010, my heart rate did jump 30 beats per minute and I was diagnosed with POTS. In addition to the POTS testing, my neurologist ordered a battery of blood tests and QSART testing ( for small fiber neuropathy). I don't receive the results of those tests until my next appointment with the neurologist next Thursday. I definitely believe I am getting a thorough work-up for my condition. The most important aspect that I liked about Vandy is that they LISTENED and documented everything I said and didn't dismiss any symptoms I complained about. Plus, Vany is extremely efficient. If your appointment is at 10am, you are seen at 10am. Of course, I am not enrolled in Vandy's research program, so I can't give you any feedback on that aspect of Vandy's medical community. However, if you are feeling that sick, I would definitely contact them and attempt to enroll. You have to be proactive with your health! Call today!! Good Luck! Bev

Dyautonomia has been life-altering in more ways that I ever thought possible: It has adversely affected my critical thinking skills. It has robbed me of my once rich vocabulary and replaced it with non-specific vocabulary words like "that thing" I now have a memory of a 4-year old. I don't remember how it feels to be healthy-- to have something not hurting! I've lost friends who I thought who really cared for me, but who tired of my health problems. That really hurt! I long for the day that I can wake up and feel rested! I want to walk more than one block without getting out of breath. I want to take a hot bath without exasperating symptoms. I want to make plans without worrying that I'll be sick. I hate that I have to force myself to do everything ( clean, laundry, cook) because I feel so bad BUT THE ONE THING DYSAUTONOMIA HAS NOT STOPPED ME FROM DOING IS HAVING A POSITIVE ATTITUDE! I refuse to give in to this disorder and I continue to find little things to laugh at ( even at myself) and to appreciate life itself. It's not easy, but my life, my health could be much worse and I'm grateful for what I do have!

I have had CFS for 16 years, but I never had hypersomnia like this. I do have sweats when I sleep though. I, too, wane back and forth between insomnia and hypersomnia. Tuesday night (morning) I didn't go to sleep until 6:45am! It just seems my sleep patterns are all messed up!

Does anyone else suffer from hypersomnia? About every two weeks, I will sleep 15-18 hours in a day! I'm in a deep sleep too, where I'm hard to arouse. Many times I will force myself out of bed after 14 or 15 hours, then after 30 minutes, I'm so tired, I go back to bed and sleep another 3 or 4 hours. When I do get up, I'm in a major brain fog and listless. I've had one of these days today. I slept for 11 hours, went back to bed after being up for 1 hour, slept for another 3.5 hours, and want to go back to bed now! I looked up hypersomnia and an article said that it can be caused by autonomic neuropathy. Of course, I don't think there is anthing that can help. I feel like such a bum though. Anyone else suffer from this?

Arizona Girl your explanation as to the need of the QSART is more explicit than anything that I have read on the internet!! Thanks for the detailed explanation! Now I understand the need for the test and I'm hoping that it does lead to a better treatment plan for my condition. I have some weird symptoms, such as hypersomnia and extreme shortness of breath, so many these tests which I think are unnecessary actually may be the key a better treatment plan. I really appreciate your insight.

Thanks for the replies. I did further research and found as Arizona Girl stated that it was to diagnose small fiber neuropathy. I guess the test is good to have , but if it doesn't help with a treatment, I still doubt it's necessity.

I am having the test at Vandy on Thursday. In a way, I think the test in unnecessary because I know that I'm not sweating properly. This summer has been one of the hottest here in Ky. and not once have I sweated when I've been outside. About a month ago when I got into an extremely hot car, my daughter noticed that I wasn't sweating while she was sweating a lot. So, I really don't know why I'm undergoing this expensive test when I already know what the results will be. Does anyone else know why AN patients are subjected to this test?

I also have noticed an increase in the loss of hair. I have thick hair so it's not noticeable to others, but it's quite noticeable to me whenever I brush or wash my hair. My family, though, may have discovered the reason for my increase of hair loss. Since being diagnosed with AN, washing my hair is a MAJOR undertaking since I getso out of breath and fatigued. Whereas I use to wash my hair every other day, I now wash my hair only twice a week. zmy husband theorizes that since I'm not washing my hair as often, more of my hair is falling out when I do wash it. Guess that's as good as a reason as anything else.