potsgirl

Just curious...Are you right or left-handed? It seems my stronger arm when up (by just a tiny amount) is my left, and I'm left-handed. I'm sure this probably has no real bearing, but it's interesting...

I'm not in quite the same circumstances you are, but I did try Midodrine to raise my BP and give me a little more energy. My BP tends to run quite a bit lower than yours, but I know it's one of the most common drugs given to POTS patients, and it works for many of them. From what I know, you should see results pretty quickly if the drug is going to work for you. I was told in the first couple of days. It didn't do much to raise my pressures, but did give me more energy for a couple of hours at a time. You can take it every 4 hours or so (ask your doc for what he thinks is best for you).

The only problem was that after about 2-3 hours, it began wearing off and I got really tired. I would have to keep taking it to stay 'up', and then you don't take it within 4-5 hours of your bedtime. Crash! Now I just use it if I really need the energy.

Cheers,

Jana

Pat,

Did you need any more info? I don't feel like I've given you much of an answer. Please let me know...

Jana

I agree with Ramakentesh that the fatigue you're dealing with is mainly associated with your POTS. As far as I understand it, CFS is only diagnosed if nothing else can be causing your fatigue, and POTS certainly does that and does it well.

In my opinion, a lack of sleep will almost certainly make your POTS worse and make you feel even more fatigued and 'brain fogged'. Migraines are another common symptom of POTS, and yes, you will in all likelihood have more headaches/migraines with lack of sleep and if your POTS is exacerbated by the Ritalin.

If you'd like to try the Ritalin, I think (if it were me) that I would wait until you have a bigger window of time before you have to be 'on' and feeling the best you can, before you start teaching. Perhaps the winter break? Or try a tiny dose and see what it does...Personally, I don't think I'd mess with it, but that's your decision to make.

Wishing you the best,

Jana

Just wondering...It seems that there are quite a few of us that have sleep apnea. Have you ever been tested for that?

Jana

I used to take either Meclizine or Dramamine for my Meniere's. My biggest problem was always the sleepiness. If I take 2 Dramamine before a flight, I'm out the entire trip, with my head lolling and drooling on my neighbors. Not a pretty sight. I can only tolerate small doses.

Cheers,

Jana

Although I had to quit work about 2 years ago, I know just what you mean by the 'I should do it today because I never know if I'll feel even worse tomorrow and not make it at all'. I do this with everything in my life, including exercise, grocery shopping, perhaps a lunch with friends. That to me is the biggest frustration...Never knowing how I'm going to feel the next day!

Jana

Debbie,

I'm glad that you found the right place and now have an official diagnosis. Now, at least, you're on the right track with a good treatment protocol and can hopefully get home soon! I'm sure you miss your family a lot. Good luck and always remember this site when you need some support or have questions.

Take good care,

Jana

Yes, I have a pacemaker and the first year with it I was on Coumadin for my atrial fib. This was about 3-4 years ago. Obviously, I still have the pacer and am not taking Coumadin any longer.

Cheers,

Jana

Hi Daisy,

I had horrible pain in my upper abdomen and finally ended up going to the ER for it over a weekend. This was last November. They gave me Morphine (a wonderful thing at that point) and tested my gallbladder. I also did the HIDA scan, but not one test showed my gallbladder as being inflamed. I guess it's not that rare that women will have the classic gallbladder symptoms and not show anything on a test. Luckily my doctor knew this, and I ended up having my gallbladder removed two weeks later. It was white and completely dead. Surgery was easy, and recovery wasn't too bad, it just takes time and you have to be very careful about what you eat for awhile.

I vote to have the test (no problem for me, either) and get rid of that pain!

Good luck,

Jana

I don't know your age or if you have any issues with osteopenia or osteoporosis, but I do and I'm fairly young to have it. I have pretty severe osteoporosis in my spine. The best exercise, if you can tolerate it and you want to make sure you're helping your bone strength is something that's weight-bearing, like walking on the treadmill. They are expensive, but they also have railings in case you feel off-balance. I also really like the EFX machine or cross-trainer (which also works your upper body), both of which you can hold on to the railings for balance and support. The bike can be good, too, but it's not really weight-bearing and I have a harder time on the bike than the other machines. Also, try to add in a little lower body exercise by doing squats or lunges (I do them on the treadmill so I can hang on to the rails to give me balance....). I also do light weights at home for my biceps/triceps.

Definitely stop by a gym to check out which one works best for you, and make sure you look in the paper for used machines. Here in Tucson, they also have stores that carry used equipment with warranties.

Good luck, and let us know what you get! Whatever you choose, moving is good for us all.

Jana

The first couple hours in the morning I can barely function. I come downstairs at 5 or 6 in a stupor, grab my cup (albeit large) of coffee, and get on the computer. Nope, not a singing, cheery, top o' the morning kind of gal. I make it to physical therapy around 10 - 10:30 in the morning, and am pretty good until 4. Then I start heading downhill again. I would love to have a larger window of 'good' time, and to get out to dinner/shows. Someday, hopefully, this will happen. And then I'll make the most of it!

Cheers,

Jana

Hi Lina,

I go through cycles of having very poor night's sleep and running on almost no energy and feeling downright sick to sleeping for 9-10 hours and still not feeling rested. I function better with the 9-10 hours, even though those nights I wake up several times and have to get up at least twice to use the bathroom. I'm going to be doing a sleep study in a couple weeks to check for sleep apnea.

Good luck & cheers,

Jana

Hey R,

I'm sorry that you're still having problems with your BP and HR being so high. I know it must be scary - I'm hoping that when you find the right doctors you'll get on an appropriate medication protocol and that will make a sizeable difference. I think you probably need to be on some meds that will help you regulate your BP. I know you're having doc problems, it's just finding that one right doctor who will work with you to find the best answers. If it makes you feel any better, stair climbing is a common source for high BP and HR's for many of us. Just going up 12 stairs puts me entirely out of breath for at least a couple of minutes. Frustrating, no?

You know we all support you and I'm hoping that you find the right doctor very soon, who can rule out other health issues and focus on your main problem and treat that successfully. You'll make it, R, you're a strong woman!

Cheers and Hugs,

Jana

Rafiki,

I have the same problem that you do with my BP getting so low it's hard to get readings sometimes. I have an Omron around the wrist (my first when I was so young and naive - 3 years ago!), which I would not recommend because it's readings are not very reliable. I also have a cuff with a stethoscope, but it's difficult to manage, as Sunfish wrote. The one I get the best results from is an 'AND' or 'A&D Medical Blood Pressure Monitor UA-767 PC' that runs on 4 AA batteries. I was lucky to work with someone that used to work with medical supplies, and he gave this one to me to try. It's turned out to be very accurate and in tune with my cardio's, and it has the upper arm cuff also. Just another option...If you want their 800 number just PM me. You may want to do some hunting to find the best one for you.

Good luck!

Jana

Hi Suzy,

It's so nice to see you back. I've missed you! I'm sorry you've been going through such a tough time, but your DO seems like a wonderful find. It's funny you brought up 'Mystery Diagnosis' because my neuro has made the same comment to me a couple of times. Did you happen to see the show about POTS? Not great, but pretty good. What's going on with your vision? Again, welcome back to the Forum!

Cheers,

Jana

You have a doctor that sees you on a Saturday?? But I digress....The only downside to waiting until symptoms occur, of course, is that with POTS it's hard to tell some flu symptoms from symptoms we already have. I also wonder if by the time we're showing symptoms that it may be too late to head off the flu?

I agree that as individuals we all need to talk to our PCPs about the benefits/risks of getting the new shot. I'll definitely get the old one.

cheers,

jana

Elfie,

Congratulations! You should be very proud of yourself for making a good, healthy decision that was best for you and your needs. Is there a friend you could stay with for a week or so while you find a new place? I'm sure there's a great apartment out there just waiting for you. You've made a responsible choice, and I'm excited for your future. Just stick with it and get the **** outta Dodge.

Cheers,

Jana

What did the doctor in the ER say about your allergic reaction? It sounds pretty severe. I can't imagine the doctors in the ER wouldn't have said something about it - what did you have tested there? I have no medical background, but from what I know personally and read about people on the Forum and allergies, it certainly could have had an effect on your body!

Hope you're feeling better soon, and I'd give your allergist a buzz about your reaction.

Cheers,

Jana

My allergist told me not to go longer than 7 days between washing sheets. You may want to try to wash yours a little more frequently and see if that helps. I also wash my towels after every 2, sometimes 3 uses. All in hot water, and totally drying them in the dryer - never outside.

Cheers,

Jana

Hi Maxine,

I certainly hope you don't pick up the illness running through your family. When I pick something up, I tend to get it worse and for a longer time period than others. I also have low BP, whether I'm sitting or standing. It's usually the highest when I'm lying down (100/75 or so). First thing this morning, after I'd been up for 10 minutes, my BP was 68/59 and HR was 105 standing. This was rather unusual because normally my HR is 60 sitting/lying and it'll jump to about 125-140 when my BP is that low. Must be something in the water.

Take care,

Jana

Radha,

Digoxin is supposed to help your heart function better. I'm not sure why you're having these results, but I would write your numbers down and tell your doctor about them. I don't think I'd continue on the Digoxin unless your doctor is supporting your use. It's a pretty potent drug.

Ciao,

Jana

If this occurs again in the next month or so, you may want to consider getting an exercise stress test. Another option would be to wear a Holter monitor to see how your heart is reacting to different stimuli...exercise, rest, etc. Make sure you're really hydrated before, during, and after your workout, preferably with a Gatorade/electrolyte product. Also, a lot of times the HR on exercise machines can be off quite a bit. For those of us who exercise, I think it's worth the money to invest in one of those monitors you can strap around your wrist to get a better picture of what your HR is doing. Write odd experiences down, so you can tell your doctor how you were feeling during that time, and what your numbers were.

Hope this helps, and that this was just an isolated incident. I'm going to echo most people on this post and encourage you to keep exercising, just at a more moderate level, and to stop if you start feeling sick.

Cheers,

Jana

I'm so sorry for your loss, but I vote for the kitten, too. While I've been sick our cat Raven has been such a companion. Animals seem to know when we really need some cuddling and give more than they take. It probably feels like it's too soon to replace Jezebel, but a kitty would certainly make you smile and give you comfort. Go for it!

Cheers,

Jana

What about using a grocery delivery service? Most towns have at least one grocery store that delivers groceries. If you don't want to ask for help shopping (and like Firewatcher I really think you shouldn't be getting groceries/shopping by yourself right now), that might be the best answer for you.

Good luck,

Jana