Tammy

Just wondering if he's had testing for specific seasonal type allergies... You mentioned that his best months are Nov-Jan and depending on where you live, this would make sense as to his symptoms being worse the rest of the year (it seems so many things attribute to our symptoms, I would guess allergies could also affect them).

Could be the barometer also affecting your feelings of being air hungry. When it gets really rainy or snowy here, I know that there is a good chance I will feel oxygen deprived. Typically if I take Xanax (very small amount), it really help to take away that feeling and it's like I can breath again -- probably works similar to benedryl by decreasing the activity of the sympathetic nervous system.

I hate to say it, but even though you've had the whooping cough vaccine, doesn't mean your body actually made antibodies to the virus itself. Vaccine's are only 80% effective, so 20% of people who get the shot it doesn't even work for, and than take into account that some forms of illness have become resistant (I'm unsure about whooping cough, but measles have become more resistant to the vaccine, so basically the vaccine is worthless to some forms of measles). However, I seem to get that same type of cough you are describing, and I end up gasping for air inbetween coughing spells. This has happned with almost every cold/influenza I've had since having pots. It's like the tickle just doesn't give up and I can't stop coughing - gagging and my head feeling like it's going to burst from coughing so hard. I'm currently in the middle of another cold (seems like we've had consistant colds/flu this season - worse than any other year I can remember, and I had such bad coughing spells my daughter brought me a trash can to throw up in, because it was so bad. I totally feel your misery and hope you can find something to help, but when you do, let me know because I have tried everything when those coughing spells hit and nothing helps!

I think that everyone reacts a little differently to medications. I found that Pindolol made my heart rate faster and caused insomnia and body aches. I tried it for a few weeks and finally decided it made me feel even worse. It took me along time to tolerate any beta blocker... I actually had to take 1/4 of the smallest dose and over many months worked up to a theraputic level which is still super small dose but does help some. I tried lots of beta blockers and finally found atenolol to work the best for me (however, it took me numerous tries to tolerate it until I finally figured out to start off at the extremely low dose and work up to let me body adjust to it).

Klonopin is what seems to help with these the best. Must be brand name Klonopin, not a generic, which you can do some research on.

I'm so sorry you are feeling so unwell. I have been exactly where you are at and wish there was something that I found that helped, but nothing was a quick fix. I'm still pretty much recliner bound, but have less constant adrenaline surges than I had for the first 3 years. The only thing that really helped them was Klonopin, however it took me two years to find a doctor that prescribed it. It worked differently than the other anxiety medications and after much research, found that it has to be the brand name Klonopin, not a generic for it to work as well for those with Chronic Fatigue Syndrome, who also sometimes have an ANS that runs on over-drive like ours do. It really does seems to keep them adrenaline surges at bay and I make sure to take a very small amount. I did have to take it for a few weeks straight at first and than I tapered back and than now only use it when my ANS really kicks up, such as when a virus', weather, and other stresses affect my system. Also, if you have access to getting massages or back rubs, providing that you like them and they make you feel relaxed, it may help too - I have to get the good tingle feeling from a back rub for it to help settle my ANS otherwise it doesn't really do that much, so maybe when that tingle feeling happens, my body releases GABA or some type of chemical that settles the ANS down for a while. I know some people try breathing exercises and vagal manuvers to try and calm down their ANS, but they didn't work/last long enough to help much. If you haven't tried beta blockers, they may also help, but really depends on how your body reacts to them also. I hope you find something to at least take the edge off the misery this illness challenges us with and the sooner the better as it seems the longer it takes to find something that helps, the longer the recovery to prior level of function takes. Also, by chance do you take Synthroid for a thyroid disorder?

Are you taking a beta blocker at all? They can be helpful for the adrenaline surge type symptoms which sounds like what you could be experiencing as it reminds me of what I've experienced also. However, beta blockers can cause sleep issues so you may need to trial and error to find the one that works best with your body. For me, ambien works better with less side effects than benedryl does as benedryl makes me feel worse the next morning. You can also try drinking Lemon Ginger Tea by Yogi as for some reason it seems to help me in the morning a bit, and maybe it would help you a bit also. Does it work for you to go back to sleep once the kids are gone to school? The more sleep you get the better you'll feel. Insomnia seems to make symptoms so much worse and I have been down that road myself and still have times when it flares and getting kids ready in the morning definitely is very challenging.

Sounds like your body is reacting to quitting smoking as if it was a stressor/trigger. If there would be a way to taper down smoking, just like when a person changes medications, I wonder if that would make it easier on your body. However I doubt there is a way to slowly cut back on smoking to avoid the symptoms you are dealing with. Not sure. I would think that after a while your body will adjust and your vitals will adjust. Good job on quitting smoking! Eat something salty when you crave a cig and see if that helps your bp out.

I'm at a point where I'd like to think about working from home somehow. However my energy doesn't allow a lot of time to dedicate to it but we could really use some help with our income and I don't feel well enough to try and pursue disability income as going to meetings would be too difficult and stressful. I can't drive consistently and most days have to be in a recliner but have a laptop that I can use. Any ideas if there ways to use my laptop from home to earn some income? Really need some legitamate work ideas! Thanks

The only way we made it through me being bedridden at that point in time was rotating shifts, so that I'd get a few hours of straight sleep inbetween two feedings. She typically ate every two hours for the first 4 months so I'd feed her at 10 pm, and they my husband would feed her at midnight, and then I would feed her at 2 am, and he'd feed her at 4 am, and so on. It was the only way we could do it since she ate so frequently. As for the toddler, the big thing for us was child-proofing the entire house. I give you credit for doing foster care as we had looked into that before we adopted and the amount of effort and energy that goes into taking care of a child without any return is amazing, especially for someone like us who struggle to even take care of ourselves somedays. I knew that adoption was the only option for us after learning how many babies foster families typically take care of before one goes up for adoption and it would be too hard to watch all those little ones leave. Blessiings for all you do and having a heart strong enough to love them and let them go.

You may want to see if adding extra salt to her diet helps and by 'extra' it takes as much as a whole can of soup or broth to help. I can tell if I eat an entire can of soup with additional water throughout the day. If the salt loading seems to help, than definitely continue to pursue a possible diagnosis in this area.

Ahhhh, so good to read that I'm not alone with this! I feel like my whole life is sucked up by time on the computer, reading, or watching TV because of how much time I have to spend in a resting state due to being so weak and sick. I'm so thankful that it's 2010 and live in a time with heat/central air and all the other commodities available to us now. I can't imagine how people with POTS lived in the early 19oo's.

Sorry to hear about your experience with your cardiologist. I've had similiar experiences with a few doctors also. I guess what I've learned to do is either find another doctor, which can be difficult if you live in an area that has only a few specialist, or continue to try and work with her. You could chalk it up to them having a bad day or that they just do not have an understanding of chronic illness. From the sounds of her replies, she's probably exhausted herself, which makes it really hard to offer compassion on to her patients. If you've seen her previous times, and she's tried to help you, than it was probably just a difficult day for her. If this was a first visit, than it's hard to tell if you should give her another chance, or switch doctors. Finding a compassionate doctor who understands POTS is extrememly difficult. It seems like Neurologist have a better understanding of the multitude of all our symptoms, even though they don't have any better ways to treat POTS symptoms, but you may want to try seeing one if you haven't already.

I'm not sure what part of the US you are relocating to, however, in the midwest we have garage sales this time of year for other things that you may need that they may not have included in furnishing your apartment. I just went to one this morning and found lots of cute items for around a dollar a piece. Hint: Garage sales at really fancy neighborhoods sometimes have the best selection of pre-owned items, but is varies on pricing also.

This exact thing happens to me when I've spent time picking up toys from the floor .. up/down, up/down, ect. and when I'm on my knees leaning on my hands when I hand wash the floors in the bathrooms, etc. I don't think it was anxiety, as your symptoms are exactly what I get from certain physical actions as I've described, but more a blood pressure/blood volume displacement from looking for your son's ball before the game which made your ANS over-react.

Yes, I was taking Synthroid before this all started. I really hope that Synthroid wasn't the cause of all these issues!

Yeah, I'd have to agree with everyone else... take her to the doctor. More than likely it could just be a virus which might be why she isn't sleeping well either, at least my daughter (who is not biological, so no inherited issues) has had times when her heart raced really fast and it was a virus and the start of pneumonia -- but until you have a doctor check it out, you don't want to just assume that's what is going on, especially when her heart rate is being affected.

Yes, you really can be that sensative to all stimulation.. including that feel good shiver from music that reminds you of happier days! I know it does that exact same thing for me and it really takes the fun out of it all. As I was reading your posts, I noticed that you mentioned your heart rate went really fast as a side effect from medication. Mine started with a really fast heart rate after an exhausting bike ride... just out of the blue, my heart starting racing out of control. Ever since that day, it's been down hill. However, it was only a fast heart rate and some weakness, etc. for the first 4 years, than it got a lot worse the past 5 years, so sometimes POTS gets worse with time. However, sometimes it gets better. So what I'm saying is be thankful for the level of function, even it's not much, that you have because there may be times that you are completely bed ridden. I really wish this illness had answers but after being to so many specialist, the Mayo, EP's, Neurologists, etc., and all the them saying that it's something I just have to live with, I've also given up and leave it in God's hand. For whatever reason, I'm sick and it is what it is. I can't change it or fix it. I sometimes get lucky and feel 'fairly' functional for a few days and then everyone around me thinks I'm better and it ***** when reality hits again and I'm back in bed. Today is a BED day -- and I know I'll probably have to take a small amount of Klonopin or Xanax to control some of the excess adrenaline my body is producing today as I'm constantly peeing and feeling like a 'rush' sensation is going through me along with all the other yucky symptoms -- which I don't like to take but it's the only medication along with a beta blocker that seems to mellow out the over stimulation senstations we all experience with POTS. Have you tried a benzo or beta blocker? Most of us do find they help some, but everyone is a bit different. Talk to your doctor and see what they think of those medications and if they might help you function a bit better.

Hey Issie - Just offering support that I experience the EXACT same symptoms you do and it has nothing to do with the position, etc., but the actual part of leading up to the big "O" and if I end up with the big "O", I'm in big trouble with symptoms just as you described. I wish I could tell you what helps, but it's the hyperadgrengic - excess catachomines being released that cause all the symptoms. My neurologist recommened I try taking an extra 1/2 of my beta-blocker about an hour before hand and try that, but I just feel too sick to even go down that road right now. Also Klonopin he suggested might help, but again, haven't tried that either. Talk with your neurologist and he might be able to give you more ideas on how to cope with this specific situation.

I'm thinking your lungs shouldn't be filling with fluid... that kind of sounds a bit like a heart failure sort of symptom, so please get that checked out right away, because if that would be the case, than you shouldn't be salt/water loading.

Tilt training was one of the first exercises recommended to me years ago. I was unsuccessful in doing the training as I also felt worse after doing it. Just give yourself a few weeks /months to get back to the level you were at. It seems time is what helps us to recover.

Is there by chance you might have a sleep disorder as part of your POTS symptoms? I ask this because I know an excellent sleep doctor in St. Cloud that had been a neurologist for many years and he had worked at the Mayo Clinic in neurology and saw POTS patients. If there would be away to get in to see him in a round about way, to discuss a sleep disorder, such as insomnia, which is common for those of us with POTS, he also will adress and give helpful ideas on how to treat POTS symptoms also. If you want his name, let me know. This is how my doctor got me into see him and he really did understand my symptoms better than anyone I've ever met.

I have PCOS also, however I'm A typical in symptoms. My doctor noticed it on an ultrasound dye test when I was being checked as to why we were having difficulty getting pregnant. I think a lot of people who don't have POTS also have PCOS, so I doubt there is any connection between the two.

Hi! So I've forgotten how to cope through a really bad cold virus. I've had many colds since having POTS, however, this one is really kicking my butt! Any ideas on how to get through this as it's causing my insomnia to flare, hard time breathing due to lots of congestion, and just feeling even more sick than my normal sick. I can't take decongestants because of the heart rate side effects and I tried benedryl which I normally can tolerate, but with this cold, it made me feel like I couldn't breath. Any suggestions on how to cope welcomed

Hi Ericka - I know that the only way I can survive the heat of summer is staying indoors with air conditioning on high. I also have cushions that get cold when you sit on them or as I do, place them behind my back to keep me a little cooler in hot weather. But even with these, I can't tolerate being outside more than about 15 minutes. Keeping your head wet with cool water can also help some and drinking plenty of fluids too. You can try wetting a bandana and freezing it and than take it out and tie it around your neck when you must go outside for a bit also. I can relate to the sweating issues... either I sweat a ton or not at all and always at the wrong times as my body doesn't seem to understand when to do what. Hopefully you can find a few ideas that help Tammy