wibbleway

Thank you all! This is really a frightful side of this disease. Has anyone had their throat stretched and did it help?

Thank you for letting me know that you have experience that too. It really is an awful feeling. I guess it is just part of the autonomic system not working.

I have recently had times when eating I could not make my throat swallow. It is a very scary feeling. Has anyone else experience this part of Dysautonomia? It really did scare me. It took a couple of minutes with food in my mouth before I could get my throat to react. Thank you for any help on this.

Hello Everyone, It has been about 8 months since I posted and feel bad for not keeping in touch. After going through more tests, the doctors have found that my POTS is part of an overactive autoimmune system. You might call it an autoimmune disease but there is no typical name for it (of course). This is causing my body to throw out a lot of antibodies that are attacking my body. They are trying me on Cellcept which is a drug for organ rejection to see if it will slow down my body from creating so many antibodies but they don't feel it will do any good for the POTS. The main thing that got me was the fact that they took me off of my low doze Atenolol (to see about the Cellcept) that made my blood pressure and pulse rate so high that I was having horrible headaches. My heart doctor just two weeks ago put me back on the 25mg of Atenolol but now this week I've noticed that my blood pressure is running 91/66 and my pulse 109 and that is sitting. I can't even get a reading when standing. What I wanted to ask you all is this, I've had a cold this week bad and overdid things with family last week during Christmas, so is my POTS just acting worse now because of the cold and tiredness? All I've been able to do the last 3 days is lay down in the bed. It is funny how you forget as the years go by but I do believe that when we overdo or are sick that it can take a week or two to get back to where you are. One thing for sure is that I am not going to let new doctors mess with my medication anymore. PLEASE let me know what you think. One of the hardest things about this disease is learning to live with it. Happy New Year and thank you!

Thank you all for your input. To answer some of the questions, I've been on a low dose Atenolol for 3 years because I was first diagnoised with POTS. Upon standing my blood pressure went extremely high and the pulse rate rose and then after 8 minutes dropped. The past two weeks things have changed. Now when I stand, my pressure drops, my pulse rate goes up. It is just the opposite. As with all of us, I can't even get a reading alot of the time. Now when I stand to take the reading it doesnt' take for 3 times. I stand about one minutes and it can show 80/50 pulse 90 then after 3 minutes it is 101/96 pulse 120. That is when I get sick. When lying down everything is normal. It seems that the POTS has developed into another form of Dysautonomia now and I don't know why? I've been in touch with Vandy and my cardiologists here. The cardiologists wants me to stay down until I can see her on Monday. Thanks for all your input.

Thank you Ernie, I sent a message to Vandy on Friday but haven't heard back. I will ask about that medicine. Meanwhile, I just resting. Thanks for all your input.

Yes, I have tried sitting up before I stand. The thing that I don't understand is why it is so low all day except laying flat. Before it would jump up high and then bottom out and now it is being low all day. This disease is really frustrating. Thank you for the help. It is encouraging just to talk about it with people who understand.

That is so true. I fight staying in bed thinking that if I get up and do something it will help, but it just makes the body not anything but feel worse. I just don't understand why my blood pressure is staying so low and why it won't even register when I first get up in the mornings. That is so different from anything I've experienced before.

One more thing, I think the hardest part is knowing that for a couple of days, I need to stay down in the bed and rest. I try to push on and it makes it worse. Why can't I just learn to stay down for 2 or 3 days and rest my system?

Ernie, Thank you for writing back. I have normally had extremely high blood pressure and pulse rate and then it bottoms out. I take a low dose of Atenelol. I have been through all the trials at Vanderbilt and so far no medications work. The difference now is that when I get out of bed in the morning, I can't even get a blood pressure reading. I tried 3 times and finally had to lay down to get it to read. Then throughout the day it is staying low and putting extreme pressure on my heart. The pulse is going up and the chect hurts. I had a really bad spell a couple of days ago and am just wondering if I need time laying in bed to recup. I hope others will write in and help me out. This is really depressing.

Hello Everyone, For the past two days my blood pressure has been so low. The last reading I took was 94/74 and my pulse was 90. It has been this way every time I stand up. Usually my blood pressure rises and then drops but this has been an exhausting two days. I've been in bed with a headache and heart flopping. Has anyone else experienced times like this? I really need some cheering up! Thank you all!

Tearose, I'm going in the morning gor a trail run. I'll let you know all about it then. Maybe someone will join in thar has gone. I need motivation (lots).

Hello Everyone, I've been out of commission for several months. It is good to be back. My Dysautonomia is know being categorized as Pure Autonomic Failure or Chronic. I'm trying to stay happy and look at things that I can do instead of thsoe I can't. I know that one thing I do need to do is some toning exercises to keep my muscles and bones strong. I visited Curves the other day and was impressed with their circuit. You are only up for 30 seconds at a time and then on a machine that is easy and doesn't cause stress. Has anyone else out their tried "Curves" and did it do OK for them? Thanks as always for being there for us all! Cathy

Maxine, That is exactly how I felt!!!! Everyone even said I looked weird. It is so frustrating because people don't understand. One of my daughters thinks I'm upset (she says because of the way my eyes look). I've tried to explain it to them, but they don't get it. That was the worst one I've had in my 5 year experience with this disease. They are getting more frequent and the doctor is saying that my symtoms are looking more and more like I'm going into Pure Autonomic Failure now. Thank you so much for replying. I really felt last night like I was going to die. This morning I am very very tired and my head hurts. I still feel weird and know that today will be a in the bed day. I wonder what triggers this type of episode??????? Anyway, thank you for sharing with me and it will be nice to see if others have had the same experience as we have had. Cathy

Hello Everyone, I took a nap this afternoon and woke up to get dressed for dinner out with our family. When I arrived to get the whole group together and was sitting in the chair, suddenly I started sweating, shaking, my pressure dropped and I felt like I was going to jump out of my skin. It was the worse it quite a while. My grandchildren were there and alot of activity was going on around me but I've dealt with that before. This was different. I even felt like I was there but not there. Hope this all makes sense to someone. I had to get my husband to take me home because I knew I'd not make it out to dinner. After laying down for a while I feel better but still not right. Has anyone else experienced an episode like this????? Thanks to all.

I was supposed to have surgery to put a screw in my fractured bone in my foot, when the doctor called and said because of the dysautonomia problems they couldn't do the surgery in the outpatient clinic but in the hospital. Well, I am glad they did because during the surgery my blood pressure dropped dramatically. They were able to get it back up but I was wondering if anyone else has had problems with anesthesia? Also does it take you longer like me to get over surgery?

Thank you all for your words of wisdom. During all the trials at Vandy, I tried every combination they have so far. Like you, I'm scared to tamper with new medicine right now because it usually has an adverse effect and right now there is nothing out there I haven't tried. Think I'll just stay off the low doze Atenolol for now and see what happens. Thanks again.

First, thank you to everyone who answered back to cheer me up. What a blessing! Thank you! I know we have talked about Beta Blockers alot on this forum but I did want to ask you all for some feedback. I was on a small doze of Atenolol (25mg) for the last 3 years. It really hasn't helped. We tried 50mg and I was having numbness in the face, anxiety so we dropped back down to 25mg. My blood pressure actually is the same whether I'm on the Atenolol or not. It is just going to drop then go high with a high pulse rate when I stand for too long. I have been off the Atenolol for 4 days and am not having the night sweats, anxiousness but again my blood pressure/heart rate are the same maybe the pulse rate is alittle higher. Now to my question: If the doctors have said they can't help me but just keep me comfortable with symptoms and the atenolol causes more side effects with no much results, why take it? Has anyone else out there not really benefitted that much from Beta Blockers in the long run? Any help would be appreciated. I have been on every drug trial available and nothing worked so my they are thinking that I am just progressing to PAF. If that is the case then I just need to realize that standing is going to make everything go haywire. Hope this makes sense to someone. Thanks for letting me ramble on and on.

Corina, Thank you for answering back. Yes, I have tried all the medicines out there. I went through every clinical trial at Vanderbilt also. I am so thankful for all the research being done and maybe one day they will be able to find the cause and cure. Meanwhile it helps to have others to talk to. Take care and thank you again for your support and encouragement.

I went to the heart doctor today and she again told me nothing new to try. My condition is getting worse and they believe it is going into Autonomic Failure but my blood pressure still raises sometimes when I stand and at other times is falls. My kidneys, eating, bowels, lungs are all not working well and it is frustrating. I keep hoping that the doctors will find something else wrong when in my heart I know it is just the autonomic problem. I asked her what would happen and she said they could just treat the symptoms to keep me comfortable as things go haywire. The people at Vanderbilt are wonderful and I thank God for this forum. No one else understands how we feel or how out of control our lives are. Anyway just needed to vent. Thanks for all your post. It always helps to know others out there understand.

Thank you all for your info. I talked with Vanderbilt and they said all my symptoms seem to be pointing the progressive pure autonomic failure. I am not sure what that all entails so if any of you have any insight, I'd sure appreciate it. As for my paraneoplastic syndrome. It was diagnosed through blood test and later on in breast cancer. Again thank you for helping me out and if anyone knows about PAF, please help.

Hello Everyone, I've been out of commission for the past few weeks and not been able to be in on all the discussions. I did want to ask if any of you have patches of numb areas? I have two patches on the top of both thighs (about a 3 inch circle) that goes up into my hip area. I know that autonomic dysfunction can manifest itself this way but wanted to see if I was not alone. Cathy

Thank you all for your encouragement. I haven't tried any anti-nausea medicine yet but will talk to my heart doctor about it. Thanks again.

I have been very symtomatic lately and even sitting up causes a tachy spell. My husband can look at me and I've turned white as a sheet. Along with that now is coming waves of nausea. Has anyone else experienced that symptom with a tachy spell. Today will be a lie in the bed day for me. Thank you all so much!

I had just started the wonderful day of cleaning my system out for a colonoscopy. The doctors had been worried about the laxatives on my system and they were right. One hour after the first dose, my blood pressure, tachycardia, and all other problems were awful. I was sweating one minute and freezing the next. I called my doctor and he said to stop the process and that they would need to put me in the hospital to be monitored to go on with the test. My question is, "Has anyone else had such a bad reaction to this?" Thanks you all!