Poohbear

Ernie, I don't know about where you live but here in the U.S. I think you would have to have a prescription to buy the IV Saline. In terms of doing it yourself; I would think that would be hard. I know for me it takes most nurses both hands to hold the vein still enough to get the needle in correctly. What is the reason you are given as to why they don't want to give you the IV when you have an order for it? Good Luck!

Christine, I have trouble with nausea on a regular basis. It could be a part of your dysautonomia or it could be caused by something else. I get a lot of nausea right before I pass out. I also get nausea with hormone changes and with migraine and/or migraine aura. I have a lot of migraine aura where I never get the pain of a headache and that's when the nausea is the worst. There are things you can take for nausea so talk to your Dr.

Thanks! Once again, I'm finding myself angry because out of one Dr's carelessness it has started a "chain reaction" and I feel like I'm fighting an uphill battle and it could cause me to lose a little more than half of my monthly income. I'm so afraid of ending up homeless!!! I get so tired of fighting for benefits that are supposed to be rightfully mine. I've worked many years and was an excellent employee and all my employer is concerned about is their bottom dollar. They are looking for any way possible to discontinue my LTD benefits and I can't survive on my SS check alone.

Welcome to the site! I hope you are able to find some answers here. Unfortunately, it can be a battle finding the right Dr's to work with and getting all the appropriate testing. Further complicating things is the fact that the symptoms you list are also symptoms of anxiety/panic disorder. Many of us do have these symptoms as well. Sometimes it's hard for Dr's to figure out if anxiety is responsible for your symptoms or if the anxiety is secondary to something else causing those symptoms. It can make some difference trying to get this distinguished because it would change the approach of medications tried first. Do you have any idea what your heart rate actually is during these episodes you describe? Have you tried any medications at all? If so, what was the effect?

Hi Everyone!! I need to have some corrections made to my medical records. Has anyone else had to deal with this? I am wondering if there is an "official" way I am supposed to request the corrections be made and how I should go about doing this. Do I have any say in this or is it always the right of the Dr to write what they want? My dilema is that in some cases when I consulted with this Dr. he didn't thoroughly read the notes I brought with me from other Dr.'s so his notes make some comments that are just wrong. For those statements, I can copy the other Dr's notes and/or have the initial Dr explain his statements in writing to support me. In other cases, the Dr took something I said and misinterpreted or only wrote half of what I said; thus the comments that were made are misleading and only half truth. For example, I said something similar to "When thinking about this visit the past couple of days I've been weepy because it reminds me of the things I've lost" And the Dr wrote something similar to, "Patient says she cried the past two days and is depressed". That's not what I said and that's not true! I wasn't really depressed, I was GRIEVING...makes a difference. These inaccurate comments could impact whether I can keep my LTD benefits or not so this is a big deal to me. This Dr also told me that I would need to find a job I could do from home. Yet, in his report he makes no mention of this. Is it inappropriate for me to request, even though I know they don't like to get involved in disability paperwork, that he include this in his note? As always, thanks for your help!!

April, You aren't alone in the anxiety about taking meds either!!! I have had so many bad experiences it's not even funny. And NOW I DO have anxiety issues about meds (my body has learned to fear it I guess). One thing I do that helps ease my mind (because I live alone) ...if I have to take a new med I will call someone and ask them to come over or I will call them and tell them I'm about to take something and to call me every 15 minutes for the next hour. It's just my way of staying calmer because I know if I react badly someone will know (hopefully in time to help me if I need it).

This is definately something to discuss with your Dr.! There are medications out there though that you don't have to take all the time; you could take them as needed. In fact, I am very intolerant to medications but I do have a BB on hand to take when my tachycardia is really out of control. I end up in bed either way...if my heartrate is too fast I can't function and if I take the med I can't function so I always have to decide which will be the lesser of two evils. I often have a very fast heart rate with a normal blood pressure so you aren't alone there. Another medication that worked really well for me was .05 mg of Klonopin. I did not take it every day (I know some people do). I used it if I had several really bad days in a row. For me, it was a miracle drug...it helped me sleep, it calmed my stomach, it eased anxiety. It would break the worst of the cycle and I would start to feel better. I really haven't been able to take any medication on a regular basis with the exception of my thryoid med. Talk to your Dr though because there are options. Even Midodrine might help you because it's short acting.

Hi Linda, How are you doing? I wanted to let you know that I do agree with others that you need to have this checked out. I also wanted to let you know that I too have had similar experiences and when others have witnessed them at times they said it appeared to be "seizure like". In the end, Dr's have said it is most likely subcortical seizures that don't show up on EEG. Either way, it's best to get checked and let them run tests if they need to. Hope you feel better soon!

First off, welcome to the site! There is lots of great information on this site and a lot of caring, supportive people. You can do a search for lots of different information as you have the time. One thing I want to say, be cautious about the inappropriate sinus tachycardia diagnosis. It may or may not be accurate although I'm not putting the Dr down. Unless they are used to seeing and treating patients with Dysautonomia it's easy for them to misdiagnose. The rapid, inappropriate heart rate could be a symptom of POTS and if that is the case you want to try medication but don't let them do ablation on you because they have learned the past few years that with POTS if they do ablation it makes people worse. I'm not trying to scare you....just trying to give you info so you can research this yourself and make the best informed choices you can. You may have dysautonomia as a result of a virus (which could have been responsible for you dizziness and inner ear issue). It is possible to have a virus attack the inner ear and you never know it aside from dizziness (ie. you don't have to run fever, feel tired, achy etc). I hope you will find some answers soon and above all, I hope you start feeling much better!

I agree! I've gone through this process before and it was okay; the psychologist was very compassionate. If you are worried about it you can just tell the Dr that you had been misdiagnosed initially as having anxiety problems. Explain, if this is true for you, that you do experience some anxiety however, it is becuase of your brain/autonomic nervous system not working properly and that the anxiety is secondary to your physical condition. Good luck and keep us posted!

Hi Everyone! Emily, (and everyone else too!), I just did a search on the internet for "Coloring Pages" and copied a few of the sites I found. I had done this a long time ago in the past when I was trying to find some children's activities for daycare and had come across them "accidentally". It's fun AND you don't have to worry about driving to a store (in my case I can't drive & I have to find people to take me everywhere). I also have another thing to occupy your time...I know it may sound silly but sometimes I've just searched for all the household products I commonly use and search their websites and sign up for free samples, coupons etc and then that way I get free sample stuff in the mail to try. Plus, being on a tight budget the coupons really help and most of the time they are better coupons than what you find in the paper. Sometimes I just watch commercials and get a laugh Check this out.... http://www.quisp.com/cartoon/index.html

I can remember how nervous I was for my tilt test. Sunfish already gave you good advice so I won't repeat all of that. For me, the test wiped me out and the first time I had the test I passed out, the other two times I did not pass out but had extreme fluctuations in heart rate and felt horrible during the test but once they laid me back down and allowed me to rest I felt better. I was definately very tired and wiped out after the test and I wasn't allowed to drive home after but I just went home and slept and I was fine. Good luck, welcome and keep us posted on what happens!

Thanks to everyone for your replies and support!! I do stay active so that isn't the issue (although some days I'm less active than others). For me, when I get like this I can't help but sleep and I don't have the problem of the more I sleep the worse I feel...it's the opposite which is how I can tell my body really needs the sleep. I find on some days I can do very little, other days, like today, I got out and purchased a few things at Wal-Mart, went to my church bldg and addressed a few cards, picked up a prescription and wrapped a gift and I am wiped out. It also bothers me because I realize that even though I was up more today, if I had a job where I had to think or concentrate there is no way I could do it most days. I get fearful that I will never be able to work again. Now I've got my LTD people on my back again (as of today) wanting more forms filled out about my daily living activities and I don't really know how to explain some of this stuff to them. How do I explain that, yes, I do go to my church sometimes to volunteer however, it's mostly just to get out of the house so I don't go "stir-crazy" and that I rest a lot and sit around much of the time while up there not really doing anything except socializing? Even when I do this, most of the time the next day I really pay for it. I know you all know how it is!

For those of you that have printers....here are some sites you can print coloring pages for free. Check these out.... http://www.dltk-kids.com/coloring.htm http://www.coloring-page.com/ http://www.freecoloringpages.com/ http://www.ivyjoy.com/coloring/coloringlinks.html

Jan, Just wanted you to know I continue to pray for you and am getting ready to do so especially this hour!! Let us know how this afternoon's appt went when you are up for it. With Care and Concern, Poohbear

Janine, I don't know what to say....it really stinks when you have to sell and give up the things that bring you enjoyment and the things you've worked so hard for in your life! I've had to give up my job, my car and my house has been on the market for a year and still hasn't sold. (It's a really cute house but the resale market in this area is awful!). It's good that you have requested all of the records be sent to you. I would stay on them about it and also, one thing that helped me a lot was I gave them 2 weeks and told them I would be by to pick them up and gave them the date I would be by to pick them up. Then, I made two copies of everything and sent a registered/return receipt copy to SS and one to my LTD and I kept the originals. Good luck! I hope you can find some way to keep the horse!!

For the past few weeks the fatigue & exhaustion I've been experiencing has been awful. I try to do a few things here and there and then it just wipes me out and I will sleep for several hours. I've also been sleeping more at night. So I know I'm not sleep deprived..it just feels my body can't get enough sleep. It also doesn't feel like I've slept too much, so I don't think that's the problem. I have had bouts like this before and I seldom know what causes them. Does anybody have any ideas for how to get out of this slump or anything that has helped them? I don't have any infection or fevers. It is possible my thyroid has declined again and I need medication adjustment but I'm so tired of Dr's that I want to wait another week and see if this improves before having to pay for more lab work. I get discouraged because normally I'm organized and on top of things and I'm having trouble just keeping up with paying my bills on time and handling insurance claims etc etc. All I want to do is watch tv (because it requires no energy and I can lay down) or sleep. Is anyone else like this?

Jan, I wish so much I could take the pain away and make things better for you!!! Can you tell this new Dr right off something to the effect of, "Before we talk, I need to tell you that we are at a fragile place right now and we've not been treated with the compassion we need from some other Dr's. so while we want to know the facts we also want to believe there is always hope...please keep that in mind." ....Something to let him know how you are feeling and what you expect from him. You can't change who the Dr is or how he reacts but especially if you tell him what you need from him and he doesn't follow through then that tells you a lot about him. Hugs and prayers are being sent your way!

How much time do you have left for short-term leave? Do you have another cardiologist or a neurologist you could go to? Try to take all your records and also maybe you could print some articles off the web about Dysautonomia to take as well. I think it's harder to keep private disability benefits than SS (that is once you get on SS disability). I've gone through the process of both and am currently receiving benefits from both. SS is a lengthy process but it is one I would also recommend you start. Be very detailed and specific when you fill out their daily living questionaire and how your symptoms impact your ability to do daily tasks (both at work and at home). If you don't already have a neurologist maybe you could look for one in your area that specializes in MS. I say this because they tend to have more experience with unusual symptoms and may understand how this impacts your ability to work better than the "average" Dr (even better than the "average Neurologist).

Jan, I hope you get better care and compassion from the Dr's you seek a second opinion from! I'm proud of you for speaking your mind to the first oncologist as well. I agree that your husband needs to know the truth....the truth though is that he is very sick and it is serious but Dr.'s don't know everything and thus, there is ALWAYS hope!! I pray for you often and will certainly be focused on that tomorrow night as well.

I can relate to having some good days and then crashing. By any chance, did you maybe "overdo" on Saturday and now your body is screaming at you for it? It may be that your body is reacting to the activity level just as much if not more to the medication. Hang in there and I hope you will feel much better soon!

I'm so sorry you had this experience!!! Did the Dr say why she felt you could return to work? The only thing I can say is look for another Dr and in the meantime, if you have to return to work keep track of EVERYTHING. How you function, what symptoms you have, if they get worse how they get worse and how it affects your ability to do your job. You could also contact JAN (Job accomdation network) to see if they can offer any assistance with how to deal with your employer with a disability. Keep us posted!!

Emily, I too have a lot of neck problems and I either have to sit up and bend my whole head down (which doesn't strain my neck as bad) or I have to prop myself up with pillows and then I use a "U" shaped pillow that is filled with buckwheat hullls so it supports my head and neck and takes the weight off. I guess part of it depends on what part of your neck gives you the most trouble. For some people, bending the neck down may hurt worse.

Katherine, I'm sorry you are having to deal with this. I know how frustrating it can be!! One thought I had when I read your post---have you had your potassium and/or other electrolytes checked recently? I get much more symptomatic when my potassium drops (even when it drops to the low end of "normal") and experience the same symptoms you are describing. Nobody has been able to figure out why my potassium drops like it does but I just take a low dose potassium pill for a few days and increase the potassium in my diet and that seems to help. I hope you don't continue to have episodes like this; maybe you can take it easy for a few days and just let your body rest.

Oops! Almost forgot.....I discovered last year kinda by accident.... PANCAKES seem to help settle my stomach. If I'm feeling very queasy but need to eat and I get tired of broths or potatoes then I can eat Pancakes with just a tiny bit of butter and very little syrup and that is something I can keep down, is filling and doesn't make me feel worse.