runningshoe

I don't know much about your particular situation, but I know my dr thinks this can happen after a day of stress hormones running through our bodies. The key is to reduce the strain on your body during the day. For me this means finding some time to lie down. Hang in there.

Hi I am glad to see all the discussion around this topic. I think that the lyme field is not well understood and I am hopeful that research funds will start to get the ball moving.... My dr said that since I have a dysautonomia it is important not to overwhelm my body with too many antibiotics. I could be taking a cocktail but the concern is an extreme flare of symptoms. As the bacteria die off you can have such flares. Since our symptoms aren't ones that are easy to manage when they flare - I am taking it slowly. I wonder if this was part of the issue with Tearose?? Not sure. I might try the iv meds next month but it would be once daily. I am on doxy 100mg 3 times a day. I am taking probiotics as well. So let's think of me as an experiment. I have a classic case of POTS. I fit the age range and am female, like so many POTS patients. I was very healthy prior to this, other than hyster stuff. I don't drink, I eat well, I exercise, I have a good body weight, a healthy heart.... So there aren't many other factors to complicate the issue. My POTS was well documented by my tilt table. I tend to get POTSY very quickly when I stand (if it is coming on). My POTS is well managed by my meds and salt but the underlying blood flow issues are still there. My heart doesn't race but the blood pools and I vasoconstrict and look like a pink road map. A couple of hours of this can make me very tired. I can feel the lack of blood flow in my head. So I guess my point is that I don't have a lot of other immune issues going on and my symptoms are very visible to me so it will be interesting to see what effect this will have. It has been 3 years and the POTS is not resolving itself. So right now I might start to feel better, or have a flare or nothing at all. I will keep you all posted. (Have been pretty POTSY but was super busy around xmas). macksmom - I don't run much. Occasionally I start to feel well enough to start up but it doesn't last. My bladder doesn't appreciate it much either. My goal is to run the trails of my town again with my dog (and tick spray on my legs!!). We will see. The runningshoe name just reminds me of the freedom I felt before this (running track was a big part of my life and running since kids was therapy). I walk a lot though and that helps. I can last for about 30 minutes. I wish you all the best in 2010!

It is good to be leary but I have good cause to proceed. I live on a street less then a mile long and over the past three years there have been numerous cases of Lyme. These were cases with the rash and the positive test. Two of my kids included. That is just my street. The town is full of similar stories. I have had many tick bites over the years. I also took my time with this dx. The dr is a neurologist who trained at the hospital where I had my tilt table test. Furthermore, she is not claiming that I have chronic lyme. She believes I will improve. I had a blood test called a cd 57 done and it measures your immune response to lyme. You should be over 100 - I am at 30. This means my body isn't fighting the lyme so well which means I am not makeing antibodies which is what the test looks for. But, I did have some positive bands on the Western blot. Some scientist believe that those bands shouldn't be there if you don't have other infections or virusus (which I don't). So looking at all of this together, I made the decision to proceed with treatment. I am super conservative when it comes to trying new things. I will keep you posted!

Happy Holidays everyone, Some of you will recognize my name, I have been around for 3 years. I have news to share but first a quick intro for those who don't know of me. 3+ years ago the "lights went out" when I was driving my car. I had just finished a great run and was finally feeling top notch after a long recovery from a hysterectomy. Luckily it was a super quick presyncope but it was enough to get me to the dr! I was given a stress test and eventually told that it was probably a fluke - brought on by the run and maybe dehydration. Over the next week I was dizzy, there was ringing in my ears, off balance...you know the drill. The dr sent me to a cardiologist who was familiar with POTS and saw the connection right away. I had a tilt table test and was dx within a month. I started treatment but it took months to get the drugs right enough for me to function pretty well. MEANWHILE, I live in a town with TONS of Lyme disease. Our rates are as high as Lyme CT. When I got sick I immediately thought of this. I spoke to lots of friends and neighbors who encouraged me to pursue the Lyme issue. When I asked my drs about this I was given the basic Lyme test but now I understand that test is very very unreliable. I asked for further testing but was told that I didn't need it. Within a few months of the POTS dx my interstitial cystitis returned worse than every. My hormones were tested and we discovered that I was totally in menopause (ovaries never worked post hyster). A Ha, I thought we had solved the mystery. Maybe the crash through menopause I had been the underlying cause of my POTS. This along with just being sick and tired made me give up the Lyme question. The past 3 years have been a struggle, I have good days and bad months. I can work part time, take care of my family and exercise but I have fought hard to be able to do that. Some days I am curled up in a ball by dinner time. So fast forward to this summer. My daughter was dx with Lyme. The dr treating her asked about me (family history). One thing led to another and I was taken on as a patient and just two weeks ago got the word that I have Lyme. I am sure some of you know but Lyme testing and treatment is very controversial. The dx is made by looking at many factors, especially when you don't have a raging fever or rash. The testing looks at antibodies and there is definately differences of opinion about what is a positive test. If you need info on that message me directly. Anyway, I cried for 1/4 of a second and then said all right let's treat this and see what happens. Maybe I will get better - maybe I won't. Maybe I eventually would have gotten worse (a poor brain scan was part of the dx). All I know is I am on a new path and I wanted to share it with you because there might be others of you out there with Lyme. I know, I know, there is so much crazy info about Lyme. But check out the movie Under our Skin from you local library and just think about it as a possibility. Interstitial Cystitits can be caused by Lyme too - or so some think. I will keep you all posted on how treatment affects me. One other thing - I have been taking Concerta for the past 6 weeks and it is definately a boost to my energy. I can last longer in the day and into the evening. My kids hate it because I am still up and on their case well into the homework hour!! So...what will 2010 bring?? Lina

Have you heard of a tick borne illness called Bartonella - my daughter has it - she has marks that look like a combination of stretch marks and scratchs on her sides. Do you live in an area that has a lot of deer ticks? Her neurologist thinks I might have it to and that it possibly caused my POTS....

The worst for me is moving my head too quickly. How pathetic that my own head turning is like a ride on a merry go round!

Are you salt loading? There are several drs to see in the Boston area. You might want to shop around. Have you tried midodrine? Beta blockers? Hang in there!

Is your face red and feels hot too? I get a super red nose on the days when I am feeling bad. I can feel it as well. My husband always knows how bad my day was by how red my nose gets. My dr says it is just a vasoconstriction thing.

I get this way too when I am really potsy. It is a terrible feeling.

Check for lyme disease too....

Hello A recent brain scan - spect scan, showed that I have diminished blood flow to the brain. DUH! But seriously, I was lying down during the test and not feeling potsy so I wonder if this is pots related or possibly something else (being worked up for lyme). So I was wondering if anyone else had this test and what their results were. Thanks

Heat makes me feel like I have no energy and can't stand for long at all. The cold makes my body have to work hard. It is a different sort of exhaustion - kind of a deeper tiredness. Does that make any sense. 70 degrees is perfect for me!

Hi Amy Are you drinking enough - getting enough salt too? Look carefully at your routine and see if anything changed. Sleep, stress, diet, look at it all. Sometimes we just go through bad phases. I have been experiencing that as well. Even if we take care of ourselves things can get out of whack. Treat this as a "flare" and maybe take a couple of days to rest and regain some stability. When we are tired and worn down our nervous system is even more vulnerable. I am basing this on what my drs say and what I have experienced. HOWEVER, having said all that, I still search for answers during my flares. It is hard to balance acceptance with advocating for ourselves. Hang in there!

Thanks everyone for your replies. The pain lasted for a two nights and was pretty uncomfortable but I have been resting a lot this weekend and that helps. I rented season one of Rescue Me and let my brain rot! I never do things like that. My kids were busy so I could indulge. For those of you who asked - the pain was not movement related. In fact it felt worse when I was still. I was very much in my arms and legs. I think (my theory here) is that after a busy week of teaching, exercising and taking care of my family, the lack of circulation (ie oxygen and nutrients) not getting to my limbs causes inflammation or deprivation of some kind. It felt like the end of running race when you hit the wall. On another note - I am having a mri and brain scan and blood tests looking for a lyme and coinfections. I finally found a dr who will explore this route with me. I live in a very lyme infested area and have had many tick bites over the years. I will keep you posted! healing wishes to all...

Hi Pots is so depressing! I haven't had a good cycle in a while. I am so tired lately that my body trully aches. My whole body hurts and I want to take pain meds for it. Does anyone else get this from pots or is it something else. It is sort of new for me but I do remember having this during other pots crashes. I am not sick otherwise, no fever etc. Thanks!

My three year anniversary of my first pots episode is around the corner. I do not believe I am better. My cardiac symptoms are managed and I don't get a secondary stress reaction any more because I know what I am dealing with. I function on a day to day basis. Some days I feel 90% some days I feel 40% (like I used to). You might want to think I about he sleep meds like the ativan - can make you tired and lethargic and add to the lack of energy problem. It is a lonely road sometimes when you feel yucky and have to muster up the energy to do the things you need to do - but we are here in sympathy!

Yoga, and walking and pilates are my thing. I can walk for 30 minutes or so but I can do a 1.5 hour yoga class. Go figure! I need a wall for balance, never put my arms over my head and try not to stand still but other than that it really works for me. Good luck!

I love to walk too. Sometimes I pay for it later in the day. STANDING IS THE WORST!! THe only time walking is uncomfortable is on the days when I feel lots of abdominal pressure/bloating - like today. Keep it up!!

For those of you who get to abdominal bloat part of POTS - is the pressure high? I feel it at the top of my stomach area. Just wondering.... Thanks!

Wow, thanks guys for all the responses! I have IC so sleep can be tough for me. I do take meds but....

Just checking - do you all get worse when you are behind on sleep? I have not been sleeping much and feel terrible. UGH

I hear you on that one! BTW thanks for the pm - doing okay. More later.

There is a lot of junk in bullion and broth. Trader Joes and Whole foods have msg free broths. The run between 2 - 3 $ a carton. Adds up but worth it! Lately I have been mixing sea salt into water. Cheap and it works!

I am great most mornings - feel terrible in the evening. We are all different. Hang in there.

I tend to run high too. What meds are you on? I take a beta blocker nadolol. With pots your bp can vary a lot. Good luck!