KareBear

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.

Hi Teagirl, Since u had some symptoms, though milder, even before ur flu episode it's possible u have had a milder form of POTS for a while and the flu illness just made it worse or aggravated it?? Just a thought. I know a lot of people have mild POTS symptoms for many years and they are able to function and have normal lives until some event (like pregnancy, childbirth, illness, major accident, physical/mental stress) seems to exaggerate their symptoms severely and completely change their lives. The tilt table test will be helpful in knowing for sure if it's POTS and I hope that maybe bcuz u had milder symptoms before getting the flu that u can get back to ur normal health soon and ur symptoms decrease over time there is always a chance and never give up hope. It can be different for everyone so dont assume this is a permanent thing for u. If it is POTS, there are some meds that help many people so just hang in there and get ur test done and hopefully a diagnosis so u can be treated. Good luck to u!

For me it can vary from day to day. Some days are worse than others but here is what I experience: Nausea Severe abdominal pain Cramping Diarrhea Bloating Pain immediately when I start eating Diarrhea immediately when eating Lack of appetite

I also have it and was put on Midodrine 2 seperate times and both times I took the Midodrine as directed for 4 weeks and both times had to be taken off of it. I had an increase in POTS symptoms while on it and my BP would drop extremely low, I would be weak and unable to wake at all (sleeping non-stop except to drink fluids or eat/drink quickly), and syncope episodes daily. Complete opposites of what I should have felt on the med so I was taken off permanently. I see also that several of u are on propranolol like I am. Though all of our dosages are completely different. Mine is 40mg 3xday. It's the only med that has controlled my tachycardia for the most part. I tried tons and tons of others that didn't help at all. Does it work well for u too?

Oh, I see now. The IPAD only has the Vet app but the IPHONE app has one for people also. My mistake, I am on an IPad so that's all it showed me. Looks like a good app, I'm going to look into it. Thanks!

Is that the Veterinary app? That's the only one I see by Alivecor.

I know that 2 of the antibiotics listed above are very similar and fall under the same catagory of Beta-Lactams. I never heard of the 3rd one u mentioned, that's sold in Austrailia only I believe. So, maybe trying a different class of antibiotic would be successful for u? If a doc could prescribe one that could help. I believe Azithromycin (Z-pack) is supposed to have very few if any possible side affects. Have u taken that before? I can only imagine how hard this is for u and scary as well. Two weeks is a long time to be sick and u sure cannot afford healthwise to let it turn into pneumonia. I hope someone can help u.

Thank u for ur response Alex! It's nice to meet u and thank u for taking the time to respond. U have such an amazing amount of information and explain it very well. Everything u said makes sense. I do think that maybe "fever" is the incorrect term like u said and that it is a higher body temp because mine always is high and certain things like standing or moving causes it to go up even more and I start sweating like crazy. It's extremely annoying. Good thing I dont stand much most days. I'm going to talk to my doc about it just to see what her thoughts are and I'll let u know. The info u provided is a huge help and gives me some ideas to look at. So, thank u. I assume if it is ANS related then there r no meds to help it? Does anyone know if there is? I will have to research that also. This symptom bothers me a lot because I have to keep 3 fans on high pointing at me at all times and the A/C on very cold. I cant even step outside in the heat for even a few seconds. It's amazing how many bizarre symptoms we have and have to put up with. It really makes it hard to get help when every area of our bodies is affected. I see so many on here see multiple docs and i dont know how u do it. I can only leave the house once a month if I'm lucky and with help. Even that is very taxing on me, Recovery takes a long time. Kudos to everyone here that finds a way to get out there and see different docs, I know it must be so difficult. I appreciate everyone here and all the help and information. What a great group of friends here

Nice to meet u kayjay! It does make sense that that could cause fevers and mine is also in the same temp range as urs, the low grade temps always seem to feel worse and more miserable than higher temps. When my insomnia is at its worst is when I have more fevers and temp problems and I never bothered to mention it to my docs bcuz I know dysautonomia can affect our sleep/wake cycles so I thought I just had to deal with it. Its good to know that getting more sleep is helping ur temp, I think I will talk to my doc about this. It's worth a try! Thanks for making me feel welcome!! And for ur advice! Btw, love ur doggy pic too!