runningshoe

Pots flares can make me feel like my eyes are being pushed out of my head. This got better with treatment.

I posted about pain last year - it was like a deep deep pain in my arms and back mostly. Seems like others had it as well. Poor circulation might lead to lack of nutrients getting to all the parts of our body ...maybe causing this? Could it be fibromyalgia? I have lyme so I think that is part of the problem for me. Hang in there.

Hi I woke up with a headache today - no apparent trigger. It progressed, I started to sweat and then the pain was unbearable and I started to vomit. Start to finish it was a couple of hours long but so bad. Anyone else get these out of the blue?

Surfing through the board today I found my old post from last year brought back.... I still have a lot of muscle pain but I think it is lyme related because I was dx with Lyme last year. Rest and warm baths seem to help - try it!

You can definitely get your salt intake from high quality broth and not compromise your healty eating. Remember sodium content is measured differently than salt. So about 500 mg of sodium is about 1 gram of salt (i think that's right). So you can drink about 4-5 cups a day and then get the rest through your food. My dr wanted me to get 4-10 grams of salt a day but I found I didn't feel good when I got too much so settled for about 6.

You should go to the dr and get your head checked out. Concussions are serious. Can someone take you to the dr?

I don't have experience with this but I assume she will need an IEP, individual ed. plan? I think in oder for it to work you will have to have some consistency...maybe just picking the subjects she really wants to focus on? Start small you can always add in. I know there are laws about educating chronically ill kids. Check with your pediatrician and your special ed. director for your town. Good luck!

I love green smoothies - quick, easy, raw and vegan. I use a banana (frozen is good - peel before freezing), a pear (use any fruit you like), a bunch of romaine or spinach or kale, some flax seed, a couple of dates, maybe some celery...whatever you like, 1 -2 cups of water and blend away! Goes down easy and you get your fruit and veggies for the day. Lots of green smoothie recipes on line. I too can't eat soy and have a vegetarian and vegan in the house so often cook it for them but cant eat it! This week I stuffed acorn squash with a mix of sauted veggies and apples and quinoa - so yummy. Prep is super hard when you can't stand on your feet - I bring a stool to the counter and try to do my prep in the morning when I am less potsy. Always make enough for a day or two - lefts overs are a big help.

Can't quite describe it....seems worse lately....feel like I sort of fade in and out very quickly sometimes. Must be a bp or blood flow issue right? Any thoughts...

Please be careful when you remove the ticks! If you stress them or squeeze them you will force them to release their dreaded stuff into you even faster. The Lyme community says not to use the vaseline trick either. I am on month 5 of treatment for lyme and bartonella which my neurologist thinks caused my POTS. The ticks don't just give you lyme - there are several other illness that you need to be tested for. Macksmom - make sure you take antibiotics for 4 weeks. You and your son don't need this to make things worse for you. Good luck and stay out of the bushes!!

So...I can have good months and bad months. Things like the weather, exercising, too much strain on my body etc will change things. Plus since Dec. I have been taking antibiotics for Lyme which my neurologist thinks caused the pots. With Lyme treatment everything gets messed up - you feel worse before getting better. So I am not a great example at this point. But before that I was relatively well controlled on salt and meds. Hang in there. By the way for salt I drink high quality (no additives) chicken broth or sea salt mixed into water. I think the sugar in Gatorade would make me feel worse?? Things will get better!

The mainstay of my drs plan for me has been salt loading, florinef and betablockers. One does affect the other and it is a balancing act. The salt and florinef help keep bp up and the bblocker keeps you from being tachy but can lower your bp...tricky to balance. The key is to take small steps with these meds and be monitored as you find the right balance. I am 4 years in at this point and have learned that sometimes I can't control the changes - they come with a wacky nervous system. But sometimes I can. Numerous times it has been recommended to me that the salt loading helps overall because it increases the blood volume which doesn't set off that oh no I have no blood in my brain thing. I too can feel totally overstimulated and definitely recommend getting a script for ativan or something similar to help wind down on the nights when you feel like your body is racing even when you are trying to rest. Do you have good dr who you can call and talk to as you make adjustments. It is key to have a pots dr!

Trader Joe's chicken or veg broth - no additives and tastes okay - is what I recommend. It is gentler on the system then the pills.

Nothing ever stays the same - this will pass - stay hopeful - I know it is hard but you have been through so much before.

I would suggest you rest and salt load - that helps me when things bounce around.

It is interesting to me that two of you who responded had a viral or bacterial condition prior to pots. Who knows what triggers this stuff but wouldn't it be great if we could identify the evil agents (for me lyme). I have been in the pits with pots and am sending everyone on this board well wishes!!

I haven't been around in a while -many of the names here are new to me. But some of you old timers will remember me I hope. It is has been a tough year with my Lyme treatment - exhausting and hard on my body but I am getting a bit better. We will never know for sure if it was the Lyme that caused the POTS but I am down on my florinef and will now start decreasing my nadolol. My body doesn't seem to need as much of either. Too much florinef made my bp get too high and now my cardiac response to activity or standing is low so I can decrease the beta blocker. Don't hold your breath - chronic illness has its peaks and valleys, but this is the least amount of POTS meds I have been on in almost 3.5 years. The antibiotics make me tired and are hard on my IC bladder but I am hopeful..... I hope all of you are staying cool and send you healing wishes. Lina

Thanks for letting me know about this. I really liked it but can't figure out how to add meds that they don't list - anyone know how to do that?

Only gained about 5 pounds on it - all water I assume. Too much makes my bp high. No colds etc. at all on it and its been 3 years.

Is your dr a lyme dr? I have lyme too. I have had pots for 3+ years but only got dx with lyme in December. I am still very early in my treatment and am not sure I have the right dr for it. Is your dr part of Ilads. I would love more info.

I have lyme- can you tell me more about your lyme/not experience? Could it be that you had lyme but it didn't relate to your pots? Thanks

Mine can fluctuate a lot too. It is part of the pots picture for me. But it is always good to take a few readings a week and check in with your dr if anything is too extreme. Sometimes the salt loading and florinef push things to far in one direction. POTS is a balancing act. Hang in there!

Hi All Abdominal bloating - I assume blood pooling has always been one of my symptoms. However, for a while it has been sooo much worse. Does this happen to any of you? Any clues as to why it goes away for weeks and then returns? Thanks p.s. still being treated for lyme - stay tuned

POTS lYME BRAIN!! I hadn't posted that poem...but now I have! Kindness Before you know what kindness really is you must lose things, feel the future dissolve in a moment like salt in a weakened broth. What you held in your hand, what you counted and carefully saved, all this must go so you know how desolate the landscape can be between the regions of kindness. How you ride and ride thinking the bus will never stop, the passengers eating maize and chicken will stare out the window forever. Before you learn the tender gravity of kindness, you must travel where the Indian in a white poncho lies dead by the side of the road. You must see how this could be you, how he too was someone who journeyed through the night with plans and the simple breath that kept him alive. Before you know kindness as the deepest thing inside, you must know sorrow as the other deepest thing. You must wake up with sorrow. You must speak to it till your voice catches the thread of all sorrows and you see the size of the cloth. Then it is only kindness that makes sense anymore, only kindness that ties your shoes and sends you out into the day to mail letters and purchase bread, only kindness that raises its head from the crowd of the world to say it is I you have been looking for, and then goes with you every where like a shadow or a friend. Naomi Shihab Nye from Words Under Words: Selected Poems

Tearose Over the past 3+ years you have responded to many of my posts with kindness and wisdom. I will try.... Did you see the post I added a few weeks back with a poem called Kindness? It has really helped me. Search for it and maybe it will touch you too. Chronic illness can leave us feeling isolated and out of control. How simple it would be to jump in the car and zip off with your family. But it isn't simple. The most basic things, like standing, can bring us down. Ohhh what are the lessons? For me my life is about the connections I make. So you write a letter to the son you couldn't visit, you post an email to cheer someone up, you share the gift of kindness. We have lost our bodies as we knew them, we have lost some friends, freedom, independence, confidence.... but nothing can take away ability to touch others and you certainly do that. I hope this winter passes quickly - I am worse in the cold too.