nantynannie

Hi Diana, I am taking Toprol XL which is controlling my heart rate and high bp (when standing) but does nothing for the other symptoms. My doc explained that it is only a beta blocker and that the other symptoms from the adrenaline/catacholamines can come from alpha stimulation. I tried a drug that blocked both and I thought it was going to kill me. The Toprol keeps me from NCS when lying down (I don't understand how this works since it is lowering my bp) so it definately helps but cannot control everything. I think the med I tried for both alpha/beta was Coreg-maybe you could ask your doc if it is safe for you to try. Ann

Not sure if this helps, but I have had something like you describe and it is costochondritis. It is inflammation of the cartilage that holds the breastbone and the rib bones together. It can be very painful to the touch and when I breathe. Try looking it up on the web and see if it sounds familiar...of course-check with the doc to be sure. Hope you feel better. Ann

Hi Danelle, What are you other symptoms? From your post I am gathering that they are related to fibro. Did your doc tell you what pattern your ANA was? This info could help. ANA is associated with sooo many things, I would normally hesitate to answer, but I see that you are already aware of that so I am going to go out on a limb and say that with fibro symptoms and your ANA I would be leaning more toward lupus out of those you mentioned. I would certainly not be worried about cancer. See if you can find out what your ANA pattern was and then you can narrow it down more. Please don't assume anything till you see a good doc. Hope you get some answers soon... Ann

Hi Traci, You asked what we do for the symptoms, many of us take medications, some try other coping mechanisms, such as eating small meals, that you will hear about and most of us use a combo. You might try compression hose for the feeling in your legs, but most of us cannot stand for very long regardless of medication or compression hose or anything else. I take a beta blocker for the tachycardia, a neuropathic pain medication for the burning pain and sleeping pills to sleep, as well as other meds. Sorry, I know it sounds pathetic, but that is my reality at this point. I fought medication for a long time, but now I am not sure I could live without it! I am sure you will get more responses soon. Let us know if you have any other questions. Ann

Hi Linda Joy, I wanted to let you know that I felt the best while on a low dose of Lexapro. I went off of it to try Cymbalta, which is supposed to help with neuropathic pain, but I have been in a terrible mood/grouchy/irritable/very emotional for months now and putting my family through ****. I think I am going to go back to the Lexapro. I know everyone has a different experience, but it might be worth a try for you. Just keep testing different things to find out what works best. Don't give up. I hope you feel better soon. Ann

Hi Mary Jo, I feel very guilty that I am not working. I feel lazy and worthless. Just when I think to myself, "Why aren't you working?" (this is usually in the afternoon, in the airconditioning, and only for a short time) I remember that I had a hard time just getting out of bed and moving downstairs to the couch this morning. Still, in those moments when I am able to get out of the house or enjoy myself for a bit, I feel guilty that I am not working anymore. I forget that I will have to pay for those moments for days afterwards and there is no employer on earth who will put up with that type of attendance. Still, I don't think the guilt is avoidable. I am not sure, but I know that you are not alone! Ann

Hi Jo, I have terrible neck trouble and the shakes, but frequently it seems like the tremors are from adrenaline. It can last for days/weeks at a time, but subsides to nothing sometimes. When a neuro doc saw it, she called it tremors. Not sure if this could be what you are experiencing? Ann

Traci, You are not alone in your symptoms and you are not alone in your docs reactions to your symptoms. The good thing is that you are being referred for autonomic testing! Stick around and you will find the support you need here. Ann

Hi there! Glad you found us, sometimes just knowing there are others out there with the same crazy/weird problem(s) is enough to get through another day. My knees also get wobbly, but not progressive like yours. I am just careful to grab something when I stand up and stay there for a while before moving. Sometimes it happens while I am walking and I just stumble or fall. I know that for me and many others on the site the hot weather makes things much worse. I think the compression hose idea from Nina is worth a try. Ann

I was also involved in a car accident and hit the left side of my head. I did not get POTS until later, but was rx'd with other stuff meanwhile. Ann

I too have recently started fainting while in bed, or in the dentist chair, while getting a facial, etc. I have never fainted while standing, just POTS. The cardio put me on Toprol XL which seems to be helping (I would have thought that lowering bp would make it worse?). Weird to me, but the doc had heard of this happening before with Dysautonomia.

Hi Everyone, I have not researched this product yet, but wanted to share since we are on the subject. I came across an ad for a Featherlite Scooter. It is a portable. The picture shows a woman carying the scooter all folded up into a compact unit. It says, "super lightweight." Again, I have not looked into yet, but I plan on it... www.noboundaries.tv (800) 926-8637 When I am in a scooter I feel less "disabled" than in a wheelchair. After all, it is not that I cannot walk, it is that I cannot stand. I always feel weird if I have to get up out of the wheelchair to use the restroom and people look at me like, "What is she doing in that wheelchair if she can walk?" I know I should not worry about what other people think, but I do sometimes. The big issue is fitting a scooter into the car. I am wondering if this one might work. Please let me know if anyone has tried this one. Thanks. Ann

Hi Kathy, I am happy to hear that you are feeling better and thanks for the tip on the testing and treatment! Ann

Hi Patti, Unless your daughter shows signs of infection (fever/swelling/tongue swelling), I would not worry about her pain too much. It is normal to be in a lot of pain after removal of wisdom teeth. Especially because she had 4 impacted teeth all taken out at once! I agree with Steph that she should keep up with the stronger pain meds if she can tolerate them. Once dental pain is out of control, it is hard to get on top of it again. Hope she is better soon, but don't be surprised if the pain lasts a while. Ann

Hi Morgan, I usually don't say anything because you get so much support from everyone on the board, but wanted to let you know that I do keep up with your story and I am so sorry for what is happening. It seems like everything is going wrong at once. Not only are you in my thoughts, but prayers as well, hope things are better soon. Ann

Hi All, Just got back from my cardiologist yesterday and spoke with him about this. I have fainted about 6 times now in the last week while flat in bed. He said it is NCS. Actually, he called it Vasovagal Syncope, but I guess it is the same thing. He said it is not that unusual for Dysautonomia. Though my bp rises when standing for POTS before it ultimately drops, it must be dropping at some point when I am flat in bed. I looked up NCS on our main page and did read something about this. Also, I posted on excessive yawning. He said that yawning is also part of Dysautonomia, that Dysautonomia is dysfunction of the autonomic system and basically anything can go wrong at any point in the game. There are not necessarily as many steadfast rules as many people think. Any comments? Thanks! Ann

Hi Monica, I am sorry that I cannot help you with this specific medication because I have never tried it, but I can tell you that I and many members have had paradoxial reactions to meds. For instance, when my doc put me on a beta blocker, it upped my heart rate instead of lowering it. It happens all the time, I don't know why. Hope this helps. Ann

Hi Rama, Wow, for 45 degrees, it sounds like you got some results! I don't blame you for not wanting to start that medication. My doc didn't put me on that because of the side effects. Don't have any experience with it. Is it working for you? Ann

Hi Bonnielee, I had to search for your post regarding this issue because it just happened to me the other night. I had just gone to bed and my heart was still beating really fast. I got dizzy, started yawning, got very nauseated but did not vomit, and next thing I knew, it was lights out! It happened twice, one right after the other. I have come close to fainting before, but never have, and certainly never in bed. Let me know if you find out anything else...take care, Ann

Thanks Kite7, it is always nice to know that I am not the only one! I have been sick ever since...driving is definately the ticket. Ann

Thanks Merrill, it was a big plane, Southwest. It has been over a week now a we had to pull over last night for the old heave ho. Motion definately triggers it now. Oh well! I know others on this board are worse off than I am...thanks again! Ann

Hi All! I think this has already been talked about, but I'm not sure. I took a flight to see a new doc last Thursday. While we were taking off, my head felt an extreme pressure downward and I thought I was going to fall out of my seat. I have been dizzy and nauseated to various degrees ever since. The flight back was not as bad, but I had to keep my head pressed against the seat for most of the flight. Is this comparable to the post about the elevator ride? Any ideas on how to get rid of it? Just thinking about it is making me dizzy! Thanks guys... Ann

Hi Roselover, Hi have fibro with POTS and I take Cymbalta. It is supposed to help with nerve related pain but I can't say for sure that it is helping and sometimes it does make my heart race. I was on Lexapro before that and did not notice any help with pain at all. One thing that has helped the pain is Zonegran (not an SSRI) and another is Ultram (pain med). Hope this helps. Ann

Juilie, I'm no health care professional, but anything that is making him more wired than he already is sounds like bad news to me. I was put on a beta blocker for my high heart rate and it made me so wired that I thought I was literally going to lose my mind. I cannot imagine what that feeling must be like for a 7 year old who probably cannot adequately communicate what he is going through. Maybe his mother will listen when she is alerted to the fact that this pharmacist is concerned about the medication? I hope so. Don't give up! Ann

Hi there, I started out with a diagnosis of CFS and Fibromyalgia. It took almost two years for the docs to make the connection to POTS. I kept telling them that I was short of breath and that my heart raced, yet, when I was examined (usually sitting or laying down) I was fine. It was by fluke that the POTS was found during an asthma test. I had one of the finger heart monitors on and when I stood up, my heart rate went through the roof. The technician happened to catch it and he went to get the doctor. They had me sit and stand several times and then finally sent me to a cardiologist for a tilt table. If it wasn't for that technician, I would still be undiagnosed. Like you, I have read several articles of docs now linking chronic fatigue to autonomic dysfunction. If you read the symptom list of CFS you will see that many of our symptoms are the same. It is an interesting connection. Listen to Ernie and try for some autonomic testing. Ann