lfreem02

When I was taking Pindolol, and then Celexa I would wake up because my entire body was shaking. My daughter was in our bed one night, and it woke her up. With the Pindolol it was more when I was waking up in the morning, but the Celexa actually woke me up during the night. It doesn’t happen otherwise. I do get mild tremors while I am awake and on certain medications. I am currently taking Lexapro and noticed that the tremors have picked back up. I drop and brake things, and trip and lose my balance a lot.

I have an appointment at the Autonomic Disorders and Mitral Valve Prolapse Center in Birmingham next month. I have seen that some people have been there, and wanted to know what the experience was like, what I should do to prepare for it, and if anyone has had positive results. I have referrals from doctors to go to Vanderbilt, but it is taking a while just to get an appointment scheduled. I am hoping the doctors in Birmingham can help in the interim.

I have been drinking a 32oz bottle of Powerade Zero (no sugar or calories), then I fill the bottle with water, Crystal Light (to disguise the salt), and salt, and then I drink 16oz of coconut water. I order the coconut water through Amazon on a regular basis. I am still having issues with lightheadedness, dizziness, tremors, and vision issues, so I haven’t found the magical combination yet.

I believe she is checking cortisol, but could be checking for other things. She is trying to get me in to an Endocrinologist, but I have to have some diagnosis, or test result to show cause for the appointment.

My GP has agreed to do a 24 hour urine test to check my hormone levels. I have been taking Florinef for about a month, and wonder if I need to stop taking it for a period of time before doing the test? I am planning to tell the lab that I am taking it, but I am wondering if it will skew the test too much.

Misstraci – Sounds like we have some things in common. I am guessing you live in Atlanta too since you mentioned MARTA. I feel bad every day, but I have to function as if I don’t. I get up around 6:30am, and get myself ready. Take a handful of medication (Midodrine, Florinef, and supplements). I then get my daughter up and help her to get ready and out to the school bus. My husband drives me to work since I am too lightheaded, fatigued, and brain fogged to handle it. I work 8am – 4pm, and then head home to cook dinner, and help my daughter with her homework. I try to do some form of exercise every night before going to bed around 10:00pm. I take my showers at night, and get everything ready for the next day to reduce how much I have to do in the morning. Nights tend to be a little better for me. I spend Saturday doing housework and grocery shopping, and my own homework, and then spend Sunday recovering to get ready for Monday.

targs66 - My heart rate has been running high since my symptoms started. I have had it drop down to 48 when I tried an SSRI, and it was 64 in the doctor's office this week, but my bp was 140/90. My lightheadedness seems to happen when I am sitting and all of the time while I am walking. It is more like I am looking through a video camera view finder (or living in the Blair Witch Project movie). I do wonder after my reaction to a new medication yesterday if the autonomic issue is causing my body to react the opposite of how it should to medications. So, I have tapered back to Midodrine first thing in the morning only. I am thinking the electrophysiologist is correct that I don't have orthostatic hypotension, but instead my vagus nerve is being triggered for some unknown reason. I sometimes feel what I perceive to be pooling in my abdomen, so maybe there is a link.

Well, pooh! That didn't work so well. Heart rate went from 83 - 162 in about an hour after taking Nifedipine 10mg. Went to the ER, and of course everything checked out fine. The ER doctor said that he bets I am tired of people telling me they don't know what is wrong with me.

I just returned from seeing my GP, who has been out on leave. She and I talked for a while, and she is going to check my vitamin D levels, and a few other things in my blood, and has ordered a nerve conduction study. We are also trying Nifedipine 10mg three times daily. I am taking Midodrine, and Florinef, but am not seeing improvement in my fatigue or lightheadedness. I noticed after recovering from the tilt table test with nitroglycerin that I felt better than I have since this all started in December. So, she is willing to give this a try to see if my issue is actually that I am not getting enough blood to my heart and brain due to the blood vessels not opening up enough. My blood pressure was 140/90 (which is high), and my heart rate was 64 (which is low for me) at my visit today. The only time I have seen my blood pressure drop was during the tilt table test (80/60). She did warn me to be very careful and watch my blood pressure closely for the next week since we don’t know how my body is going to react. If the Nifedipine doesn’t work, there is another vasodilator that I can try, and if that doesn’t work, we are going to try an SSRN. I am still waiting to hear back from Vanderbilt, so I am glad we are still pressing forward until I can get an appointment.

The neurologist I saw has been dealing with something similar with his wife for about two years. He has come to the conclusion after no one else could seem to help her that she has gluten sensitivity, and it finally caused neuropathy. My symptoms of burning/cold in my left arm, left cheek, left eye lid, and legs, are symptoms of neuropathy. He made a comment that when he did the hammer test with my knees, that I had a hypersensitive reaction. I also couldn’t walk a straight line due to the weakness in my legs. I have also experienced pupil dilation in my left eye that caused blurred vision, but has stopped, and I think it is linked more with the autonomic dysfunction. I can deal with the neuropathy; it is the lightheadedness that is my major problem. I had a big day on Sunday. I went shopping and to a movie with my daughter. I was lightheaded anytime I was standing, and felt like I was approaching the point of passing out a few times, but I was determined to have a fun afternoon with her.

My neurologist’s wife went through something that sounds like dysautonomia, and he did a lot of research to determine how he could help her. They did determine that she has an issue with not tolerating gluten well, so she omitted it out of her diet. It ended up helping a lot with reversing her neuropathy. I went on a gluten free diet a few months ago. I have had improvement with my neuropathy, but I can’t say for sure that it was due to the change. I did splurge on vacation a couple of weeks ago and ate some food with gluten, and some of my symptoms linked to my neuropathy have returned. I don’t know if they are linked, or if I just over did it. One of the good things is that a lot of the prepackaged Thai foods are gluten free and have a lot of sodium. So, it is a good option for something quick and easy, or if you need the extra sodium.

I am really hoping that exercise is what finally helps me to get past the lightheadedness. I have been forcing myself to walk across campus to meetings at work, do some type of daily exercise, play with my daughter, and push myself to do housework as I would normally. There are a lot of times that I feel like I am getting close to passing out, but I am learning what to do to get through it. I was in the hospital for 10 days when I was 19 due to a car accident. I had to have a portion of my liver removed, so I couldn’t eat or drink anything for the first few days. I didn’t expect to be so weak after such a short period of time. The nurses told me to focus on something to help with the dizziness the first time I moved from the bed to a chair, and it was a huge help. I slowly started walking after that, and was back to college classes full time within a couple of weeks. Unfortunately, many doctors make the assumption that inactivity caused the issues we are having. I was very active prior to my symptoms. I was Christmas shopping, bought a new car, and was keeping up with my daughter on Christmas vacation when my symptoms started. I almost gave into my symptoms and did stop exercising for a month or so, but started back when the doctors told me it was safe. My symptoms are not as bad as many on this forum, but I do think pushing myself has helped me keep from getting worse. We are very fortunate to have the internet, and a lot of helpful information available to us to know that activity from the start is important to get through this.

Peregrine - I do get an almost spacy feeling. It feelings like I am zoning out, but I lose control of it. Usually when I am tired I zone out and then snap out of it, but this I can't snap out of. I have been especially exhausted recently, so I don't know if it is playing a part in it being worse. I have set backs that last a couple of weeks, and then I find that one or some of my symptoms lesson or stop altogether. My left pupil used to dilate causing blurred vision, but that stopped a few months ago. I was experiencing severe pain in my left jaw, but it is very rare that it happens anymore. The flushing and burning in my left cheek has stopped, and so has the burning in my left eyelid. I am noticing that the cold burning in my left arm is getting better with this set back. It is almost like my body goes into an intense healing period, which takes so much out of me, and then has to take a break for a while. I still have symptoms, but the fatigue isn't quite as bad during the breaks. I am determined to beat thing. My goal is to feel better in time for the fall and winter, which are my favorite times of year to do things with my daughter.

AdjustingMySails - I am glad you posted your explanation. I am new to all of this and am still trying to understand what is going on with my body. I was told a couple of weeks ago by an electrophysiologist that he thinks I have an issue with my autonomic nervous system linked to neuropathy in the left side of my body, and that something is triggering my vagus nerve. He does not think I have POTS, because they haven’t recorded an increase in heart rate like they would expect, and also does not think I have orthostatic hypotension, because my symptoms occur whether I am sitting or standing (at least I think that is what he was trying to say the reason is). I have seen my heart rate go up to 120-130 while walking at a slow pace, and 140-160 when walking up stairs. My heart rate was 120 while lying down during an echo test I had done earlier this year. I have not seen my blood pressure drop, but have seen it increase. I had a tilt table test done, and I felt really lightheaded and had to look down to tolerate it, but nothing significant happened with my heart rate or blood pressure. About five minutes after taking nitroglycerin, I felt horrible and the tech thought I was having a seizure because my pupils dilated really big. My blood pressure dropped to 80/60, but I am not sure what my heart rate was. I don’t think I ever lost consciousness, but did end up in a cold sweat when she finally lowered the table. The crazy thing is that when the test was over, I felt better than I have in a while. I have not seen any major benefits from taking Midodrine, Florinef, or Celexa, and wonder if my norepinephrine levels would be high if they were tested.

My symptoms started abruptly with lightheadedness and blurred vision in December 2011. I have been dealing with multiple neuropathy symptoms every day since then, but the lightheadedness has been an issue every day. It feels like I am looking through a video camera when I am walking or driving (which I have stopped doing for now). I have episodes where the lightheadedness gets so bad that I feel like I am going to pass out. I am currently on midodrine, and started taking florinef three weeks ago. I have been having a new type of lightheadedness that hits when I am walking, and feels like I am so exhausted that I am going to pass out. I was doing a little better with it by slowing down a lot, but last week I had a really bad episode that nothing seemed to help. I was walking across campus to a meeting around 8:30am, and shortly after I left the lightheadedness hit. I slowed down my pace, but the feeling got worse. This time I felt weak all over, almost like I had the flu. I stopped a couple of times along the way to sit down, but it didn’t seem to help. After about 20 minutes, I finally decided to skip the meeting and return to my office. I continued to feel lightheaded and weak and after lunch. I continue to have these episodes, but not as bad as that one. I drink three liters of fluid a day, take salt pills and eat extra salt, and try to exercise daily. I am a vegetarian, and am on a gluten free diet to hopefully help with recovering from the neuropathy. I have continued to work full time, and try to do as much as I can tolerate as far as shopping, house work, etc. I am hoping if I keep pushing, one day I will finally feel better. The doctors are still not sure what is causing the neuropathy, and think that it is linked to an autonomic dysfunction. I have been referred to Vanderbilt, and am working on getting an appointment. Has anyone else experienced this? I have read about fainting, which I have not experienced, and change in position lightheadedness, but I am curious if this is normal for autonomic issues, if I can expect it to eventually go away, and if there is anything else I could be doing to make it less disruptive.

I am still trying to get an official POTS diagnosis, but my GP did put me on Celexa two weeks ago to see if it will help with the fatigue and lightheadedness. My brain fog has been a little better, but I am still really sleepy, and lightheaded anytime I am upright (feel like I am going to pass out at least once a day). I started out taking 10mg, and then went to 20mg last Friday. Saturday I was playing with a new heart monitor/watch, and my heart rate was 48. I checked it with a blood pressure monitor, and even after walking up the stairs it was 56. I normally have a resting heart rate of between 70 and 95. So, my husband was quite worried. I haven't seen it drop back down since this weekend, but I work, so I think my heart rate doesn't get a chance to drop quite as low as it does when I an vegging on the couch trying to recover on the weekends. The neurologist I have seen told me it can take four to six weeks to see the full effects, so I am trying to be patient.

One more site for you. I have found a lot of blogs with information about gluten and a possible like to chronic fatigue syndrome, fibromyalgia, and multiple sclerosis. http://surefoodsliving.com/ There are links to other sites from this one.

I was just on one of the news websites and came across links about gluten free diets. Funny how that works sometimes. Also, I forgot to mention how good Betty Crocker gluten free brownies and chocolate chip cookies are. My husband and daughter love them. http://www.allyou.com/diet-fitness/nutrition/eating-gluten-free-00411000071390/?xid=fox-news-ay-celiac-061112

A neurologist had me go on a gluten free diet a couple of months ago. I haven't been tested, so it is just something to try. There are cereals like Rice Crispies and Chex, and soups like Pregresso mushroom that are gluten free. It is becoming popular enough that big brand names are putting it on the front of their labels. Be prepared to use coupons, because they are more expensive. You can find bread in the freezer section, and of cource products in the natural foods section. I have heard that you can even buy gluten free shampoos now. Dressings, and sauces can have hidden gluten, and may not mention gluten on the label. I look at the allergy list on the label, and if it says wheat, I leave it alone. If you are going to eat out, you will want to plan ahead. Fast food and sit down restaurants will usually have gluten free menus or at least an allergy list that you can check online. Be careful with gluten free pizza. Even though it is gluten free, there is flour in the restaurant and the dust can end up getting mixed in. So, if you are sensitive, it could be an issue. There are a lot of great websites with recipes, restaurants, and brands that are safe. It takes a little work, but it isn't too bad. I have been told that it could take a few weeks, or several months to see a difference depending on your level of sensitivity.

Hello. I am new to the site, and thought I should introduce myself. So, here we go. After an eventful year, I turned forty December 26, 2011. I thought it would be a fresh start entering a new year on the calendar, and a new decade of my life. I bought my first new car on my birthday, so things were looking good. I was driving into work and became lightheaded and my vision became blurred. I had to pull over a few times before finally making it to work. As someone jokingly said, my warranty just ran out (me, not my car). I have seen an ENT, GPs, Neurologists, Cardiologists, Ophthalmologist, and a Rheumatologist. I have had an MRI, CT scans, tilt table test (after nitroglycerin hr = 50, bp = 80/60), stress tests (heart rate would go from 80’s to 110’s while sitting), echo cardiogram (resting hr 120), EKG, and blood work. My symptoms have included lightheadedness every day to some degree, feeling like I am going to pass out, blurred vision due to my left pupil dilating randomly, extremely dry eyes, burning in my left eyelid, burning and numbness in my left cheek, pain in my left jaw, feeling of cold water running under my skin in my left arm, Raynaud’s, burning/pain/tingling in legs, mild headaches, fatigue, nausea, tremors, tachycardia, and rocking vision when I walk/jog that makes me feel like I am in a home movie. I have the lightheadedness, and rocking vision from the time I get out of bed in the morning until I go to bed at night. I did a test where I leaned up against a wall with my feet six inches away, and my feet did eventually turn a greyish purple. I was very active when the symptoms started out of the blue. I stopped exercising at first, but started back, and make a point to exercise every day. Sometimes it is the only time I feel near normal. I have found that being in the pool helps with my symptoms, but I am lightheaded as soon as I get out. I have taken atenolol, metoprolol, pindolol (which is when the tremors started) and fludrocortisone together, and am now on midodrine 10mg/3 times a day and Celexa 10mg. I drink two-three liters of water a day, try to take in 3-5 grams of sodium a day, and take vitamins (alpha lipoic acid, magnesium, b12, b1, vitamin C, just finished four months of vitamin D prescription, CoQ10, fish oil), and wear compression stockings. I am a vegetarian, and was put on a gluten free diet a few months ago by my Neurologist with the assumption that I have neuropathy. His wife has been dealing with orthostatic hypotension for a couple of years, and is doing much better with a gluten free diet and Midodrine. So, we are trying what worked for her. The doctors are leaning towards orthostatic hypotension due to an autonomic dysfunction, and POTS has been mentioned by two of them. My GP is on maternity leave, so I have seen her back up twice in six weeks. The first visit she said it was an autonomic dysfunction, but six weeks later she told me it was anxiety and that I was being hypersensitive what is normal with my body because the treatment wasn’t working. She also said that any female with my build would have the same tilt table result as I had. She agreed to trying Celexa, but told me not to read the possible side effects, because I would start experiencing them also as symptoms. Needless to say, I will not be returning to her. The Rheumatologist sent me a referral to Vanderbilt today for POTS. She said that she had two other women with the same symptoms as mine, who had been diagnosed with POTS, see her within a month of my appointment. So, she had already been familiarizing herself with it before my appointment, and printed out some information for me. She also warned me that there would not be anyone in the Atlanta area who could diagnose and treat me, so I should go to Vanderbilt. I was really hoping to find someone at Emory, since that is where all of my doctors are. There seem to be doctors at the Children’s hospital who are familiar with it, but not adult specialists. So, that is my story. Now to my questions. I have noticed that people mention having “flare ups” or “return of POTS”, which makes me assume that they have periods of time that they are feeling better (not necessarily 100% normal). I have yet to experience a good day since my symptoms started five months ago. I don’t know what caused this, and every test has shown that I am very healthy, aside from the orthostatic hypotension. The assumption by the doctors is that this can be controlled, and possibly self-limiting. What have been the experiences of others? Another question I have is, did anyone have a flu shot or other vaccination before their symptoms started? I have always been an advocate for vaccinations, but know that people can have bad reactions to the ingredients in the shots. I had my flu shot a couple of week before. I saw a show about a teenage girl with vasculitis as a result of a vaccination, which has made me wonder. I also ended up getting whooping cough as a baby from the vaccination. I did have an ear infection diagnosed when this all started, which could also have been a trigger. Last question for now, has anyone been diagnosed with chronic fatigue syndrome?