babettess

Oh Erica! What a day you have had. Hang in there and hopefully they will discover the primary issue while you are there-like maybe tomorrow!!!! I traveled 5 1/2 hours to Cleveland Clinic last year and had many of the tests you are having. They are not fun and they do wear you out. Take care of yourself. Make sure you stay hydrated and try to get some rest. Tomorrow will be another big day! Hopefully the neuro-muscular people will be able to see you and will figure out what's causing you to be so ill. For the QSART and blood volume tests at least you will get to lie down. Give your daughter a big C-H-E-E-R for being so helpful. I will be praying that the neuro-muscular docs see you tomorrow and are absolutely wonderful, prompt, and knowledgeable. Keep us informed. You have alot of people on here who care about you. Hang in there. Babette

I just started the generic. My doctor didn't say anything about having to have brand name so I don't know. I will let you know how it goes. Babette

Hi Kayjay, I have hyper POTS and I just today started taking Mestinon. My doctor prescribed a very small dose of 1/4 of a 60mg tablet once a day for 2 weeks and then 1/2 a day for 2 weeks and then 1 pill a day. He is very aware of my medication sensitivities and is very willing to start my doses out small. I got up enough nerve to try 1/8 of a pill today and I didn't have any side effects. I will stay on this small dose for a few days and then start the 1/4 if all goes well. I will keep you informed of how it goes. Babette

Well I got up my nerve and took 1/8 of a 60mg tablet today. No side effects so far!!!! I know that is a small dose, but I can only handle small doses of most all medicines. I will take 1/8 for a few more days and then go up to 1/4 like my neuro ordered. I am hopeful that this will help. Thanks for all the replies. Babette

Hi Everyone, Thanks so much for all the replies. I have gained some valuable information to share with my doctors. I had my xrays of my neck. I sat with the radiologist as he examined them. He explained them to me and I got to ask him questions. He didn't see any instability. He did show me where I have moderate spurs which are compressing on the nerves to my hands. He suggested a MRI if the numbness in my hands gets worse. My Physical Therapist who is familiar with CCI also looked at the XRays and didn't think there was any instability either. He was actually the one who first brought up the possibility of instability. I know instability is such an unknown area. I guess I will wait to see what happens. Thanks so much!! Babette

Hi Everyone, My neuro prescribed Mestinon for me back in October and I am just now getting up the nerve to try it. My daughter is on spring break this week so she will be here with me in case I have problems. I am very sensitive to medications and have quite a lot of FEAR involved when I try new ones. I read through the threads on Mestinon and looked at several websites about it, but nothing beats the live advice of this board. I will be starting out at a fraction of the normal dose. I am to take 7.5 mg once a day for a week and then increase by 7.5 mg's every week until I get up to 30 mg. I am so thankful that my neuro understands my medication sensitivities and starts me out at very low doses of everything we try. He says the pharmacists probably think he's crazy for the dosages he orders for me because they are so small, but oh well. So my questions to those of you who have knowledge about Mestinon are: How long does the medicine stay in your body? If I try it today, do the side effects go away by the next day? Can you stop it at anytime? Hope everyone is having a sunny, pain & palpitation free day! Babette

As I read these posts and write this one, I am struggling to breathe, my hands are shaking, I don't feel like I'm thinking clearly and I am afraid that I'm really going to not be able to breathe. I'm doing deep breathing techniques and telling myself,"This will pass, it always does." I'm watching the clock because I know within 30 to 40 minutes of panic I will start to feel better. And what caused this adrenaline rush? I had too much FUN! It seems like TOO mich of anything is too much for my body to handle. Too much fun, too much noise, too much laughter, too much(fill in the blank) and I'm shooting off adrenaline like it's a fourth of July fireworks show. Oh to live in a Goldilock's world where everything is JUST RIGHT-not too hot, not too cold.......... Hugs and panic free days to everyone! Babette

Erica, I am so glad you gave us an update. I have been wondering how you are doing. Just a thought- have they tested you for Myasthenia Gravis? It causes weakness like you are experiencing. Hang in there! If you get scared again remember we are all cheering you on to get well soon. Come on here and post and I'm sure if any of us are around we will keep you company. Babette

Hi Erica, I'm so glad you were able to give us an update. Hang in there. Hugs and prayers, Babette

Sending gentle hugs and prayers your way. Try to relax and remember you went through this once before. You are in the right place for the doctors to figure out what is wrong. Please keep us updated on how you are doing. Babette

I have EDS and POTS. I have three daughters and one is completely healthy, one has EDS and POTS for sure and one is severely handicapped. She might have EDS and POTS but it's hard to really test her. My youngest daughter is the one with confirmed EDS and POTS and she started showing signs in high school with the POTS and elementary school with the EDS. But we didn't know anything about EDS so she didn't get diagnosed until she was 17. I think there is definitely a genetic component. Babette

Thanks so much mkoven! I have a few more questions...... How did they diagnose your problems? XRAY?? MRI?? CT Scans?? What kind of exercises do you do in PT to help strengthen your muscles? Is the Aspen collar a soft or hard collar? I am trying to get this all figured out as I know more is going on with me than what is currently diagnosed. I am looking up information on the two doctors you mentioned. Thanks so much! Babette

I spent 7 hours in the Emergency Room on Friday evening. I couldn't get my heart rate down or my whole body to quit shaking. The ER doctor was familiar with POTS and hooked me up to a bag of 1000ml of "Lactated Ringer" IV fluids. After the second bag, I started feeling better but then I got worse again and began the whole skaking experience all over. Then I got a little scared because I wasn't getting better and wondered if something else was going on that was going to be missed because we were just thinking POTS. The ER doctor said to be patient that sometimes it takes a little more. So after two more bags of fluids, my heart rate went down and I stopped shaking. My neuro has said that getting IV fluids occasionally might help me and would give me a standing order, but he doesn't think my insurance will pay. I'm not sure how much I was helped by the fluids to know if I want to pursue doing it more often. I would like to give it another try though and get the fluids started when I first start feeling bad instead of after I am in such poor shape. Maybe it wouldn't take as much fluid then. The day after the fluids I had a headache, was very swollen and all my muscles ached, but my heart rate was down. Does it sometimes take so much fluid for us to see the benefits? Please related experiences. Thanks, Babette

I recently posted about how neck pain makes my autonomic symptoms worse. I discussed this with my Physical Therapist and he is concerned that I might have cervical instability. He wants me to see my family doctor and have flexion/extension Xrays and one done through my mouth while it's open. Background-I have had whiplash injuries from two car wrecks, recently diagnosed with EDS(although the signs/symptoms have been around since I was a child), bone spurs on C-4 and C-5 and also have fibromyalgia. My geneticist has suggested a standing MRI to rule out Chiari Malformation but so far I haven't found a doctor who will order that. Of course I also have hyperadrenagenic POTS. My symptoms include: Neck pain in the back, sides and front of my neck intense pain when C-2 is pressed on extreme tightness of the muscles in the front/sides of my neck to the point that they are visible shoulder pain and tightness pain between the shoulder blades (Multiple trigger points in all the above areas) tight feeling in throat that makes me feel like my air is being cut off, but O2 is always normal one shoulder is obviously held higher than the other Head sits on neck tilted a little to one side Some days feel like my head is a cantaloupe and my neck is a toothpick trying to hold it up can only look up if I support the back of my head or I feel like my head is going to fall off my neck muscles are too weak sometimes to lift my head off the pillow if I'm lying directly on my back trouble coordinating a swallow- especially with liquids spells where I feel like I can't get enough oxygen floaty feeling dizziness/wooziness/off balance feeling some numbness/tingling in hands/fingers if I sleep wrong floaty feeling/swallowing difficulty/air hunger/palpitations/ feelings intensify if I flex my neck forward either while lying down or sitting up headaces ususally only during my menstrual cycle I haven't listed all POTS symptoms as I just listed what I think might be neck related. So for those of you with knowledge of cervical instability--- Do these symptoms sound like they could be instability????? What kind of a doctor diagnoses it? Do most radiologists know how to read the XRays?? (I live in a very rural area. Xrays won't be read by a radiologist who sees "zebras" very often.) Any ideas as to what I can do to help the instability or things I need to specifically avoid until I can get checked out by my doctor and Xrays? Thanks so much for reading this. I know most of the people here are more knowledgeable than our doctors so I really value all opinions. Babette

I was diagnosed with EDS by a geneticist. It was a very easy appointment. I gave my medical history and made sure to mention everything that I knew I had that could be caused by EDS. (Example- high palate, extremely fast deliveries of my children, C-Section scar that is not pretty) Then the dr. asked if I could do any "tricks" and I showed her what I could do. She felt some of my joints and looked at my skin and said, "Yep. You have EDS." I wanted to know for sure so I could do everything I could to feel better. For example, I wanted to learn how to protect my joints so I don't cause injury to them. For me, this appointment was one of the easiest and well worth going to. I found out at the appointment that one of my daughters has EDS too, one doesn't and the third could possibly have it. It was definately worth going to just for that information. Hope you both have good appointments! Let us know how they go! Babette

Hi Nikki, This floaty/dizzy/off balance feeling is usually worse for me than the tachycardia. It disrupts my life the most because I can't drive, read or move when I'm feeling so wierd. Hope you feel better soon. Babette

I also was just told I had a yeast infection based on my Pap test. I didn't even have a clue that I had one. But now that I have treated it, I do feel better in that area. I really don't have any suggestions. I just wanted to let you know that you aren't alone. Babette

Hi All, I'm wondering if anyone else has this issue. I have almost constant severe neck pain due to several car wrecks, EDS and bone spurs. Whenever my neck pain is worse I feel like my POTS symptoms are too. I fell on the ice last week and messed up both my shoulders and my neck as I caught myself on the porch handrail..(I fell to my bottom but my hands were still holding onto the handrail. ) The resulting pain across my sholders, chest and in the back, sides and front of my neck is really taking it's toll on me. I've been much physically weaker, shakier, and my fatigue has been much worse. My heartrate is going up with the smallest amount of exertion. My neck feels like it's too tiny and weak to hold up head up. (It feels like my neck is a toothpick and my head is a cantaloupe!) My neck is visabley swollen in the front. I look like I have a bodybuilders neck because the muscles are all defined. I probably have twenty different triggerpoints where I can push and cause pain. I had been doing a little better and was actually thinking I was gradually getting better. Now I know I'm not, as I feel as bad as I used to feel. Any ideas on how the neck pain and POTS symptoms are related? My physical therapist says they are related in several ways but I would like to hear from you guys. And for those with EDS - does this sound like a normal EDS reaction to an injury?? I haven't been on the forum much until lately due to a computer problem. I'm so glad to be able to interact and ask questions again. Thanks, Babette

Hi Julie, I smiled as I read your post. Aren't we as mothers always wondering about our choices? I have an 18 year old daughter who has POTS/EDS. Her room is a total mess. I even made a sign and put it on her bedroom door that says-This area has been deemed a disaster area by the Department of M.O.M. and D.A.D. It's been there for probably a year now and she says she's not taking it down. About her disaster of a room-what I have decided - and this could be right or wrong- is that she is old enough to make her own decisions about what her own room looks like, but she's not permitted to leave messes in the rest of the house. I decided this based on a conversation with my now 20 year old (then 17 year old) about her decision on something.While asking (well lecturing) her about her decision she made the comment to me, "Do you think I haven't learned anything from you in the last 17 years?" That comment really has altered my style of parenting. I have always been a very strict parent, but I eased up after that conversation and now give my children the opportunity to make more choices on their own. I still have high expectations, but I've lightened up a little. So I figured that yea, by 17, I should have taught my daughters most everything they should need to know and it was time to see if they had absorbed any of it. So I eased up a little on what they HAD to do. I decided that as long as my ill 18 year old knows how to clean, she can make the decision as to whether to keep her room clean or not. (It took a long time before I could walk by her room without getting upset, but I'm not bothered by it anymore.) I do expect that her room be free of anything that could cause a health hazard, but I don't pay a bit of attention to the piles of clothes or books. I mean if she can't find her favorite pair of jeans or a report that's due, well that's not really my problem, but hers. As to how I handle teaching her other responsibilities: When she feels up to it, she cooks supper and does the clean up and also does laundry. Since I am also ill, I would rather have her use her energy to help out the whole household than use it to clean her room. A little selfish of me??? Maybe, maybe not. One of my goals with her is to help her budget her energy and time so she can handle her illness better. I want her to be as prepared as possible to go into her hopefully "independent" adult life. She is a fulltime college student and on the days when she has college, she is worn out and doesn't do anything else. But I expect her to do more on her good days. I also give her a length of time to finish anything extra I might ask her to do. I will say, "By next Monday, I would like for you to....." I am hoping that by giving her a length of time she will learn to budget her time and energy on her own. I also encourage her to use energy to learn daily living skills like cooking, how to clean different things, maintenance and general chores. Anyway, so that is how I have handled things with my Potsy daughter. I 'm just passing this on to you. Please remember this is only advice. What has worked for me may go against your parenting style or you might just think it is ridiculous. I do not consider myself an expert in child rearing and the only letters after my name are M.O.M. I just have done a lot of research and have parented a lot of children throughout the years I was a foster parent and have always worked in jobs that were around or about children. I currently provide family support to families in our local community who have children with special needs enrolled in the Infants & Toddlers Program. Here?s the advice I would give you if you were one of the families I work with. Please feel free to like it or not like it. To help encourage your son to be responsible and to develop into an adult who knows how to budget his time and energy you could try the following. 1.) Think of all the tasks your son needs to know to live independently as an adult. (Even if you think his illness will prevent him from ever being independent and regardless of his limitations, as modifications can be made to accommodate his limitations) These could include cooking, laundry, cleaning, yard work, house maintenance, car maintenance, etc. You could also add "couch" activities like making up monthly menus, grocery lists and cutting coupons. Be creative. Be prepared to help him learn the new tasks. 2.) Make a list of all the things you have come up with and break them down into tasks such as ?Load the dishwasher?, ?Change the batteries in the smoke alarms?, "check the air pressure in the car's tires", "cook supper", etc. 3.) Give your son a time period to complete a set amount of tasks that could go something like the following: ( Use your own judgement based on what you know about your son and what areas you think will help foster his indepence the most. This is just an example.) January 11-18, 2010 During this week, you will choose two activities from the ?List?. (This gives him the control to learn how to budget his energy and time. It let's him choose what he wants to do and when he will do it. Teenagers love thinking they are in control. I think children with illnesses especially like having areas of their life that they can control, as so many areas of their lives are completely out of their control.) If you would like, add an incentive or a consequence. Example: If both tasks are completed within the set time period, he gets extra allowance. If not completed, he would have to make arrangements with a family member to do his chosen chores and pay them for their time. This simulates real life. If you work hard at your job, you sometimes get bonuses and if you chose to not do things yourself you might have to pay someone else to do them. Make sure you have everything in writing and have a place for him to record what tasks he accomplished and when. He will learn valuable skills by having the opportunity to make his own choices as to what to do and when to do it. You will be fostering his independence in more ways than one. I hope this helps. I know you are a wonderful mother as it is so evident when you are talking about your son. He is so blessed to have you. Babette

I couldn't live without Atenolol. I take a very small dose as the loser doseage works for me. I took 1/4 of a 25 mg tablet a day for almost 20 years and it worked great. My cardiologist couldn't believe that a dose that small could work, but it did. Since being diagnosed with POTS, I now take 12.5 mg twice a day and can NOT miss a dose or my heartrate skyrockets. Hope it works for you. Maybe you could ask your doctor if you could start out on a very small dose and see what happens. Babette

Hi, I also have POTS, EDS and Fibro. When I have this severe type pain in my neck and one shoulder, it has always been caused by my neck being out at T2. If I feel the back of my neck along my spine with my fingers, I can feel where I'm "sideways" at. Once I get it back in, the pain is so much better. Just a quick thought!! Although you are familiar with dislocations, maybe this is a new one that hasn't happened before. Your college is beautiful. Hope you have a better day. Babette

Hi Dustin, Wow! I've never seen such a workup. It looks like it gives valuable information. Thanks for sharing your results. While I haven't seen my test results in a format like yours, I was told that my sympathetic system and my parasympathetic were in a battle for control. I am very interested in what kind of doctor you saw and how he determined that you are undermethylated with high levels of Histamine. I have been researching this very thing!!! I have very high levels of histamine in my 24 hour urine and Benadryl is one of the only drugs that makes me feel better. How did your doctor determine that you have a high level of histamine? Did he use a test to determine that you are undermethlated?? My doctor originally thought perhaps I had MCAD, but my urine methyhistamine is normal. Just my histamine is too high and on two different tests. Glad you have some answers and hope you feel better soon. Babette

Hi Erica, Vent, vent away.....as long and as often as you need. We understand completely. I have found a very inexpensive help for the shopping problem and Thankful already mentioned it----a seat cane. It's a cane that has a seat on it that you can fold out and sit on while waiting in line. I got mine at a pharmacy and it cost $28.00. The best $28 I've ever spent. It's very light to carry and sooooo helpful. I went mall shopping for the first time in about 2 years the other day because I had it with me. When I get to the checkout lane or whenever I need it, I just unfold it and have a seat! I went in each store, did my shopping and then went to the van for a break and drove to the entrance for the next store. It felt wonderful to actually be doing my own shopping. When I have to be in one store for a long time, I do ride in one of the electric wheelchairs. I can't make it through Walmart without one. I'm sending warm thoughts to you and your kids. I've been thinking of you but unable to post due to computer problems. As one cheer mom to another---I have made it to two of the football games that my "college cheerleader daughter" cheered at and none of the basketball games yet. We can only do the best we can do..... As far as the crankies......Well, sometimes I tell my family, "I'm feeling like I could eat the heads off live snakes". That lets them know I'm about to get the crankies. And don't worry about getting kicked out of Florida- it's full of crabs.....sandcrabs, fiddler crabs, hermit crabs......you should fit right in! Take care of yourself and do consider a seat cane. You'll be so glad you did. Babette

Sorry I haven't responded back to my original message. I have been having computer problems for quite awhile and have only been able to read the posts. In response, I have gotten a standard poodle puppy in hopes to train her (or have her trained) to be my service dog. I have had her since August and she is doing remarkably well. She will start service dog training when she is a little older. I met with the mother and daughter who live near me who both have POTS & NCS and other issues and both have service dogs. I was amazed at how the dogs help them. Along with the normal service dog help such as picking things up, and opening doors---- these dogs are trained to lay on the ladie's stomachs when they faint and lick them until they regain conciousness. Their weight helps distribute blood flow to the brain. Amazing!!!! Along with getting the information on service dogs I have made two great friends. For me in particular, my dog will be trained to call for help in case of an emergency on her very own phone. The thought of this makes me feels so much better as I have to spend alot of time alone. I can hardly wait for her to be trained as I feel she will help me be so much more independent. I will try to keep everyone updated on this exciting adventure. Babette PS.. I have soooooo missed posting. Hope my computer will get back to normal so I can rejoin all you wonderful folks...

I'm so sorry you are having these spells. Activity does it to me, too! Not all the time, but sometimes and without any warning. I'm not sure what actually causes this to happen. I once read that a "healthy" person would feel like a POTSy if they : Didn't eat or drink for 24 hours and then Ran a marathon In 100 degree weather And I think there was something else, but I can't remember it. Another way I've explained it is it's like having the flu every day (without the fever) and running a marathon. Hang in there and I hope you feel better. Try to stay hydrated since you're probably losing a lot of fluid. Babette