angelloz

I have plenty of problems with blowing a vein or hitting a valve etc...that I did not have before autonomic problems.

I know everyone's hand that is held up will be paler than the other. I would try the heart rate test or see if you doctor would order a tilt table test. The qsart also tests for autonomic problems but don't know if that is available to you. Hang in there. So often we have to keep pushing for an answer.

I have a head pressure feeling too. In the beginning in the morning my eyes would be red and crusty , ears felt funny, it felt as though my whole head was heavy and full of fluid. This has improved somewhat over the years, no fatigue with this though, I always felt revved up and wired. I was unable to sleep.

I get this too, and like you feel terrible when the pulse pressure is low. I lie down when this happens and drink plenty of fluids . I can't remember if I have discussed it with my doctor. I will try to remember to next time. Like you I don't want to go into too many complaints at once...they sort of statrt to brush me off.

So good to hear about some healing of the body. That is amazing!

Early on I too had the half face numbness...just exactly like lidocaine from the dentist is starting to ware off. It really felt scary. I haven't had this in several years. It would usually go away in 24 hours or so. I did have a numb spot on my leg I noticed when shaving. It has some feeling again after 3 years or so. Interesting??

Hope everyone has the best day possible!! Thanks to all that listen and share!

Plenty of us have small fiber neuropathy or autonomic neuropathy. Tests for those include various tests like the qsart and sweat tests...skin , tissue punch test, etc... Have you had those?? However to say there has been treatment for those things, I have not had any. My main treatments include fluid loading, leg exercises, supplements to keep potassium in range. Most medications have caused problems with my migraines. It is confusing coordinating cardiology and neurology.

I think it very much sounds like POTS anxiety. Go easy on yourself. Different types of deep breathing help me when I have this feeling. Like you it happened more in the beginning.

Well, thanks to all. I made it through the extraction but the first night I got up and my blood pressure tanked..went to the floor couldn't get a reading , and was ready to call 911. after 10 minutes got to the bed drank fluids and after a bit longer got a low reading. so scary, I felt terrible and was so close to passing out.I then had tremors and heart slamming. It almost felt like my body was in shock. I stopped taking the amoxicilliin in case it was a reaction. Think it could have been from not getting enough salt and food even though I tried to fluid load. Maybe it was the local. The doctor didn't want to use a sedative with my issues. Today is a bit better. I am glad it is over, my body doesn't like any type of stress or change. I need another pulled but will put that off for awhile. One down......thanks for sharing your experiences.

I have had really bad dental problems which began at the beginning of my illness when I had a constant dry mouth. For some reason this is better now. Anyway, I have some swelling on my lower jaw...there are three possible tooth causes..two teeth including an upper and lower that need extracting. I am terrified. Has anyone had this done since having autonomic issues?? Part of the problem is fear. When ever I am nervous or upset, I can't eat and my body goes haywire. I just can't keep things in perspective, a tiny bit of adrenaline and then I can't calm down. If someone has had a tooth pulled how did it go? My surgeon knows of my situation and is using local anesthetic. I am only doing one tooth at a time. .

Yes, I can relate to this too. Late afternoon I am at my best. Occasionally I will get a weird uncomfortable spell in the evening. I agree that fluid loss does not explain it all. I do seem to have an anxious feeling most mornings after I get up.

I have had this! Absolutely. I have learned to control it with slow, deep breathing and talking myself through it. I too have low BP that goes very high when this happens. I have had it occur while waiting in a doctors office too. Anything from the routine I guess. I think it is our bodies over reaction to stress of any type. I have also gotten this when given medication IV for migraine. Once, I screamed out for help as I thought I was dying ( to match you embarrassing moment! ). I think there is a reason beyond panic attack. Don't feel alone!

I have this frequently....resting my arm on a stack of pillows, and making sure the cuff is very snug will sometimes give me a reading. I think it has to do with low pulse pressure or maybe low blood volume?? When I sit back down I can pick it up although a couple of times when I felt really terrible it would error out while I was sitting too. I think I have heard others speak of this. Quite tricky figuring it all out. Good luck.

Mike, I just had to chime in and compliment your thoughtful response! Well said!

Don't know if this will calm some of your fears..but at the early stages I was incontinent for several weeks...then it just slowly went away. I began having problems at age 50 so I understand your fears. I am beginning to think it was menopause that triggered it in some way..it would explain younger adults getting this in their teens...hormonal shifts, except when you are younger your body can fight back and recover. Just some thoughts. Hang in there, several of us older folks have these same issues. I would say nearly 6 years in things have changed, some a bit worse some a bit better. Sleeping is easier for example, less tachy too. But more pain and weakness at times. Many symptoms wax and wane.

Mine too starts out high and generally improves unless it is one of " those " days. I have headaches constantly...some mild some send me to the ER on my knees!!

Wow..what a day! Let me know what you decide. I have a tooth that needs to come out and am too scared to go forward! Congratulations on the baby!

At the beginning of my illness I had the urinary incontinence ..I was wearing pads to teach. I thought it was from menopause..didn't have a diagnosis of autonomic problems yet. After a months or so it went away.

Hello, I have been feeling some of what you speak of. I felt like I dealt with it all fairly well but feel myself wondering how to keep my head up as this goes on year after year. I have told myself I may need to reach out more. Friends would probably stop by more if I just asked them to but I am always hesitant to do this. Today I told myself I am going to try to do one nice thing a day for someone else...I want to feel like there is purpose! It may just be sending a card to someone or email, maybe fixing a treat for my husband for when he gets home from work...etc... I think we just need to keep going forward. I do still hope for improvement. I do think it wears on a person.

I am suppose to start a recumbent bike..just waiting to find one at a reasonable price. I will be interested to know what others say about exercise. Wish you were having better results! Good for you for trying!!

Just wanted to send some empathy. Every day is difficult enough but when we backslide...it just seems so unfair! Hang on, better days are ahead!

I feel worse as well and for me changes also trigger migraines..a shame because I use to LOVE storms!

One of my first findings was increased heart rate upon standing and low potassium. Not everyone has a blood pressure issue. POTS is diagnosed from various tests including orthostatic tachycardia.( tilt table ). I was diagnosed with dysautonomia unknown cause due to the above with blood pressure issues and low blood volume. Don't jump to any conclusions. It sounds like your doctor is following up with a plan so that is good! Keep us posted. Hope everything resolves for you quickly!

I have been wondering the same. Even before my illness I always found it difficult to turn my brain off of whatever was troubling me at the time. I too constantly think about this illness, constantly assess how I feel. Doing things outdoors when I can helps the most, even pulling weeds, but some days that is not possible. I did some online meditation that I believe helped some but I have gotten out of the habit and need to try this again. When I talk a walk I try to look up and let my mind go blanl and just observe my surroundings. Keep trying..I think it is important to distract ourselves and not obsess.