KareBear

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.

I hear you, the shower was the first sign for me too. I would get out of the shower every morning and lay straight on the tile floor for 30 min, I was so weak and faint feeling. After doing that daily for a year my family finally said I think you need to go to a doctor. Lol you think?

Sitting at the bottom of the shower and using cool water has helped a lot. And also a detachable shower head with sprayer makes washing hair much easier.

Now all you need is pretty lipgloss lol!!

I do hope they help though, let me know how it goes. I should be getting my binder in the mail soon too.

Lol @faintinggoat, I do wonder what his solution would be.

gjensen, you may notice when you lift your arms above your head to reach something on a high shelf also or things like blow drying your hair will make you symptomatic as well. Lifting your arms above your head can cause heart rate to increase for us with dysautonomia.

That's good info. I wasn't aware the abd binder should be put on before getting out of bed and removed after laying down. I'll have to try that.

gjensen,

That's a really special story you shared, I know I enjoyed it and will remember it. Thank you

Good morning Alicia, how are you feeling today?

gjensen, it could be the fact that you are lifting your arms above your head and not the water itself possibly. It's common for symptoms to worsen when we raise our arms up and also affects our vitals. This has always been a big issue for me when bathing.

Chaos,

I believe you are absolutely correct as to what's going on. That is what is feels like and makes complete sense. I am in an unusual position not knowing what is what now and where to even begin when something new pops up. My gyn oncologist is winging it a bit too with my case. I kinda feel stuck in an area by myself with all this. So, thank you, you have helped a lot and I appreciate it I feel better about it and after looking up anaerobic metabolism and lactate I found some info on it that describes it well and I do believe that is what's going on. Thanks!!!

I've heard others say the abdominal binder helps their bp, sitting too. My mom just ordered me an abdominal binder to try so I hope to find out soon!