KareBear

Racer, i hope you are hanging in there and today your pain is better. About filing a complaint with the hospital, it's not a bad idea. I had a bad experience in the ER once and contacted the director of the ER about it afterwards. He not only took action against the nurse who treated me so horribly but also gave me his private cell phone number in case I was ever in the ER again and had any problems I could contact him directly immediately. So it doesn't hurt to try. Plus like you said it would make you feel a little better.

Thegron, have you checked your BP when your hearing diminishes? To my knowledge it is very common for hearing to fade when your BP drops so it is possible it could be due to Orthostatic Hypotension or low BP in general.

I have tried taking melatonin during the day/morning and it knocked me on my butt for the entire day. Literally couldn't function until after 5pm or later. I wasn't a newbie to using melatonin either, I had used it many times to help me try and sleep at night and the dosage I used was 3 mg. So my personal experience is that it makes my POTS symptoms worse.

Everyone has given me some great tips and I cannot thank you enough. I am going to try everything until I find what works. I am so grateful for everyone here and that comes from my heart. It's so nice to have such caring and helpful friends to lean on here, I feel like I at least have some hope now and am ready to try these tips. Thank you all and I will let you know how it goes.

I'm deaf so I guess mine doesn't count lol

Thank you Alicia, I really need to try these things because it's become so hard for me. Do y'all notice if sleeping in shorter spurts or longer full nights rest makes a difference upon waking?

I know exactly what you are going through. I dont have a single friend left and haven't for years. No one to even text or talk with on the phone. They all moved on when I got sick so it does get lonely and as you know trying to make new local friends at this point is nearly impossible. I want you to know that I am here if you want to talk anytime! I'd be more than happy to chat with you, let you vent, hear about your days that are bad, anything. Hang in there!

Thank you, it is helpful. How do you raise the head of your bed, what do you use? Do you put something under your mattress?

I've heard of people getting better from post viral POTS and even had a relative that had it for only about 6 months and it went away completely. She hasn't had any symptoms for a year and a half now so it's possible (and I am hopeful for you) that you could actually be getting better. I've seen it happen! When you say you still have dysautonomia, what other symptoms do you have daily? Are you able to function normally?

When I wake in the morning I am so weak and faint feeling (as I am sure most all of you are also). On the mornings I HAVE to get up just to walk to another room of the house (I'm home bound) or have to take care of my puppy who is full of energy and wants attention, does anyone have tips on how to function easier? Anything to help me be more mobile even for a little while.

Thank you Anoj, what you describe about showering and sweating right after getting out is exactly what happens to me too and it is so frustrating. It's good to know I'm not alone though I am sorry you have to deal with this also.

Fainting goat, I have learned that it doesn't matter how great you feel your doctor is if they dont have equally great staff. I have had some very rude nurses and receptionists that made it impossible to get the care needed because they are the front line. They are who we have to deal with most and count on them to relay our info to our doc and vice versa. If you love that doc I would make an appointment to see him/her and ask your questions directly and also mention the problem with the staff and how you were treated. If you dont have the feeling this doc is the best for you then I would possibly go ahead and find a new one. You shouldn't have to put up with this. I have switched docs because of staff before and was happy I did. You dont need the extra stress right now.

Hi loot, welcome! I hope you continue to be able to function well physically, It's good to keep that up if possible. Do they have you on any treatments or meds for your POTS?

Fainting goat, I dont know how long they want you to try the increased fluids and salt before you got back to the doc again but if it has impacted your life for so long and isn't getting much better maybe you can call and make an appointment to see your doc sooner. There are meds they can try that help many POTS patients and I dont blame you for wanting to try something and soon. I know the feeling, you feel desperate to try something, anything, that may help. I hope things do get better for you!

My teeth are very fragile now and they were always perfect up until a couple years ago. I dont eat hard foods or candies now. I have chipped 2 of my back teeth on 2 separate occasions and each time I wasn't chewing on anything hard. I think it is from dry mouth or it could be from EDS in my case. Either way its frustrating.

Thank you Jackie! Your blog has a lot of great info and I appreciate your description of biofeedback, it's very interesting and something worth looking into.

I dealt for years with chronic headaches and migraines that would last for days and tried different meds with no luck. After I was put on oxygen a few years ago I noticed it stopped the headaches, almost completely, I still get some minor ones at times but more than likely the ones I get now are sinus related and I dont get them often at all. I do stay on oxygen continuously but feel like just sleeping with the oxygen on at night is what stopped my severe headaches (because I was only on O2 when I slept when I first started O2 and that's when I first noticed a difference).

I'm 28!!!! Been sick since a child but diagnosed when a teenager (17)

I'm sorry to hear you are going through this, Andy. Like the others mentioned, maybe this is a good thing and it'll help the docs to figure out how best to treat your case and what meds to put you on. Being in the hospital is no fun, but maybe this is what was needed so they can finally find a regimen that works for you. I will be thinking about you and hope that something good comes out of this for you. Let us know how you're doing when you get a chance. Take care and try to rest.

Welcome both of you, FaintingGoat and Darlene72, to the forum. I am fairly new also. Getting that diagnosis is bittersweet. It's nice to have a diagnosis finally but at the same time you realize that there is no magic pill or cure for this and that we all have a long road ahead of ourselves. It's nice to know we aren't on this journey alone and we have each other here to lean on and support each other. If either one of you, or anyone on this forum, ever wants someone to talk to well I am here. It's an open invitation. I'm always home so messages are welcome anytime. Hang in there and just take things one day at a time!

Darlene72, you are certainly not alone. This is a daily issue for me and the more worn out I get (from trying to push myself to do more) or the more tired I get (from not enough sleep) makes this problem worse. If Am up and moving around, which is always inside my house, I start sweating profusely. As soon as I lay back down and relax I immediately start to cool off. It's quite miserable. I can even get out of my shower (which I take sitting) and am already sweating when I get out and the water is cool, never vary war at all.

Jackie, thank you for your input about the meds. I dont currently take anything for it because my temp is constantly going from one extreme to another that before the meds would have time to kick in the fever would already be gone. Usually laying down helps but it's frustrating that I cant even walk a short distance without breaking a big sweat and burning up. I am going to keep your thought on motrin/tylenol though. Can I ask what exactly is biofeedback and how has it helped you?

Thank you for your responses and information, It really helps so much!

That's very interesting info about oxygen, Alex. I did not know that and I do have vasoconstriction problems so it makes a lot of sense. Thank you!

I think the O2 works in more of a preventative way for me. Because I stay on it 20-24 hours a day it's the constant flow of oxygen that helps. Before I would have migraines that lasted days and always wake from sleeping to a massive headache. Now I rarely get them at all. I have a stationary machine that runs all the time and I have a nasal cannula I wear at all times with flow set at 3 LPM. I think sleeping with it on has helped the most.

I stay on an oxygen machine at home and it is the only thing that has helped my migraines, chest pains, shortness of breath and confusion for the most part. Since I am mostly bedridden it's not much of a problem staying on the O2. I was curious if anyone else uses it at home?

Seeing what u all r saying about eating just reminds me how POTS can be so different for different people. I only eat once a day and even at that meal its not much. I dont feel hungry and eating or not eating doesn't change how I feel. I used to check my blood sugars with a home monitor a few years ago and randomly since then but it was always normal too! For me the symptoms I thought could have been blood suar related r just some of the POTS symptoms for me.