KareBear

ChristyD, what are they called on the Amazon site? How would we find them? Sounds like it's worth trying!! I know several younger POTSies that would really benefit from it. Thanks for letting us know

Distraction is a good idea. I'm just curious as to how the device would coax you?

I had been on midodrine and a beta blocker before I went to Mayo and still wasn't functional with those meds. I had already been thru many different beta blockers by the time I went. At Mayo they told me not discontinue the meds I was already on.

The only test they STILL will cover is the TTT.

It's no problem, Andy, I completely understand your reasons. It does make sense. I was only curious since I dont believe I have heard of the type of dysautonomia you have and I am a medical geek and love learning. I'm very sorry you are going thru that and being a rare disease makes it tough to find others that can understand I imagine. Thanks for the response and well wishes!

Hi Rima, welcome! One thing you will notice is that we all respond differently to everything including meds and whether we can work or not. For me personally I was in your same position, just starting a job I truly loved but had been pushing myself for so long that I knew inside I wouldn't be able to push much longer. It got to the point I couldn't make it a full week at work without calling in sick at least once. For me, my doctor was very concerned about the effects pushing myself so hard had on my body. He felt the constant tachycardia that never let up was bad for my heart and causing a cardiomyopathy. So I did have to quit work for both the effects on my health and because I literally could not push myself anymore. I was physically and mentally drained. So I filed for social security disability and I am still on that and wont ever be working again but not working and being home bound has helped my heart and body in general. There are plenty of people here that can work though with the help of certain meds. And some are able to work more hours than others. It seems to be an individual thing and possibly the cause of your dysautonomia could make a difference as to whether you can work and if your body is affected by pushing yourself. I think once you et your tests back and see your doctor for possible treatments you may know more about your future. Meanwhile, you have lots of support here! I certainly understand what you're going through! It is a loney place, you are right, but it doesn't have to be as lonely because you have friends here that understand

Sarah, girl you sure have a lot to deal with right now. It must be a bit overwhelming! It sounds like the EP is doing enough background checking to make sure the ablation is right for you and he sounds like a great doc. Will be thinking about you, keep us posted! (((Hugs)))

You could be right! That is a big shock to the system with even one change so several would be rough.

Honestly other BB's I had only given two weeks or so because I would have those really low BP's and symptoms. When I saw my EP cardio who knew a lot about POTS he switched me to the propranolol (after a hospital stay) and told me it was an older BB but has success for many POTS patients and wanted me to give it at least 6weeks and not give up on it and not miss a dose. He felt my body would adjust to it and it would work. Well he was right it works great for me. I'd same the worst of the symptoms lasted about 3 weeks and then by the 2 month mark I had no side affects at all. Of course this is just me, I dont know what your doc may suggest. I hope you find the right one for you too

So glad you called your doc, I hope he calls back. You're right, starting new meds is always a challenge for us.

Bigskyfam, I am sorry you are experiencing this side affect. I also take propranolol and I had gone thru trying at least 5 or 6 different beta blockers before finally sticking with this one so it can take some trial of different meds sometimes. It did take me about a month to adjust to propranolol completely with tons of dizziness and lightheadedness. Couldn't stand up for more than few seconds. All the low bp issues but my body did adjust to it. I think calling your doc is a good idea so he knows your side affects. I hope your vision is better today!

What BB are you on? Did you lose vision for long? I dont know it your BP ever drops low but when mine gets real low (and many beta blockers would drop my BP too low) it causes me to black out but only for a second and then vision is back immediately. Sometimes things just go dark and come right back (grey out) but doesn't go completely black. This is just what happens to me. Your symptom may be different and it is probably a good idea to call your doctor and let him/her know about this. You wouldn't want it to happen while driving, that used to happen to me all the time driving. Very scary.

(((Hugs))) blue

Jackie, I went to Mayo in the beginning of 2008 so maybe they changed their protocol sense I went. My docs here had taken the recommendations from Mayo and followed that. They haven't changed the mestinon and florinef which were prescribed at Mayo, then all my other meds are in my local docs hands to change and adjust.

I had both an upper endoscopy and a colonoscopy, each with sedation, each done at different times and I did perfectly fine both times. I have never had one done without sedation. If I had to do it again, I would chose sedation again....but that's me. I dont know your exact symptoms typically. I have tachycardia and hypotension symptoms with my POTS.

I wonder if adrenaline surges could cause this. I dont get teeth chattering but if I am awakened from sleep or wake before my body is ready I feel like my insides tremor and my hands do visibly tremor. It's like my whole body is shaking.

That's an interesting thought Katie, I had never thought of it like that.

Andy, I was curious what difference in symptoms you have compared to others that you mentioned? (If you don't mind sharing) i'm sorry it took your docs so long to diagnose you. So many of us dont know the cause of our dysautonomia or POTS and that's frustrating. How did they diagnose yours? It sounds like you were lucky to get properly diagnosed in the UK. Do you know what the statistics in the U. S. are for the type of dysautonomia you have is?

I'm dealing with this right now too. I'm sick and my symptoms are as bad as they were when I became disabled. They haven't been this bad in years and being sick sparked it. I hope your doctor gave you some answers and you start feeling better.

Thanks for the tips! I will remember that. Your husband is funny Janet, I never thought of a mannequin lol.

I had always had milder dysautonomia symptoms too and in 2005 I had started experiencing this severe migraine along with low grade fever and dizziness/weakness that lasted a week and wasn't improving so my family doc sent me to a neuro immediately. He did a spinal tap and said it wasn't cloudy so sent me home. My symptoms got worse and landed me in the ER the next week, they did another spinal tap and said the fluid was clear so sent me home with meds. This went on for a while and though the majority of the migraine and symptoms improved, just a few months later was when my dysautonomia symptoms became more disabling and I began struggling doing day to day activities. This was still a year before I was diagnosed but that's when things had taken a turn for me towards such disabling POTS. Migraines and low grade fevers are still something that are frequent for me. After reading these posts I now wonder if I could have had a type of undiagnosed low level meningitis or something that affected my CNS.

I appreciate the information you have given me even if we dont know how to fix it, it helps just understanding what's going on. I did not know that illness, stress, etc could all affect your system but it makes perfect sense! Right now things are confusing enough so understanding at least some of it is helpful

I admit I have no willpower to be able to do any special diets. Plus when you aren't the one that buys your own groceries, you kind of have to eat what is bought so that makes it harder.