runningshoe

Seven years...Every day/month/year is different. Good days: exercise, walk or recumbent bike, cook, clean, drive carpools, work part time, yard work, enjoy family. Not so good days: cook or clean or exercise or work, can only do one. Bad days: me on the couch. More good days than bad.

Take good care of yourself, go at your own pace, plan ahead, find some kind of exercise you can do on a regular basis, learn to say no. Your story will not be like anyone else's so stay positive!!

I think that just because your vitals look good doesn't mean you are having the best circulation etc., so you can still feel poorly. In fact that extra pumping your heart was doing was probably getting more blood to your head. ??

Thanks folks,

Same meds as always, even less of them, do have chronic lyme but was a treated for close to two years....still searching! Thanks!

Haven't been here in a while....

Have had pots for 6 years. Try to do most things right (meds, rest, exercise, salt, lyme treatment) but it seems that even though some symptoms are well controlled my fatigue is worse. Anyone else having this experience? Almost seems like I am heading more into CF territory. Just wondering if anyone else who has had this for years has any insight....

Healing wishes to all.

Thanks

Watch the movie Under Our Skin

explains a lot!

Two years of Lyme treatment....using less medication for POTS but definitely not better...YET.

How much did you have? Just curious, I put them in smoothies...

The exhaustion comes and goes for me. Sometimes I am on the couch all day. Some days I feel almost normal. HOWEVER I want to add that ever since I read a post this winter on exercising on a recumbent bike I drag myself to the gym and push those pedals. I need lots of recovery time but I am convinced it is helping. The resting sometimes just makes you feel even more lethargic. I am fortunate because I don't faint so I can push myself a bit. The exhaustion that hurts is the worst - everything just feels wrong - for that I take medication that will help me sleep. Hang in there!

III - sorry must not have kept my finger on the caps button. It was also to look for mito issues but by passed the biopsy etc. It was a difficult test but I have a few tips if you need them. It is hard to find anything about it on the web. I did not really understand the test fully until I was there. See if you can start early in the am as the day gets difficult as you go along and you can't drink or eat. Next, dress in layers because I was soooo cold and that made everything more difficult. If you have no problem with being cold then you will do much better than me. If you do then read on a bring a warm blanket!! The right heart cath does not hurt but it really helps to be calm and be prepared for all the risks they are going to list for you as you sign all the paperwork. The take you to a procedure room and you lie very still while they put on a local anesthetic and then make a small incision and then insert a tube down toward your lungs and right heart. This doesn't take long at all. The next stage was getting an iv (cath?) into my artery in my wrist. Because I was so cold and have Raynauds it was very difficult. 5 tries on one arm and then they switched to the other. If I had know it was going to be so cold I would have brought hand warmers (like the kind you take skiing) or even brought warm socks to keep my hands in while I waited. ANYTHING would have helped. It took several tries on the next arm (basically I was like - ahhh get the thing in there because I am not coming back again!). The actual exercise part was the best because I finally got to move and warm up. It was very busy in there with them taking blood samples and pictures of my heart (after radioactive dye was injected through the iv). Lots of people in the room. Very nice folks at MGH but I was a little frustrated with how hard it was to get into my arteries and I have two big bruises still 5 days later. However, if you try to stay warm you might have a much better success rate! Definitely have someone drive you home. Don't expect to feel like doing much the next day. For me the biggest problem has been how sore the bruises are. Oh and when they pull the cath out of your neck (the one that led to your heart) it feels very strange but they will talk you through it. I got there at 11 and was done at 6. It is a long day. Make sure to eat well and drink plenty the day before. They did put me on an IV drip because I was fading a bit. It is a fascinating test - most people are in shock when I tell them about it because it sounds so expensive and complicated. Good luck and hopefully we will all get answers some day.

If anyone is going to have this test and has questions please message me. I would be happy to explain it and help you prepare. It is quite a test!

Sounds like you need to check this out with your dr.

Just wondering if your parasympathetic nervous system isn't working? Maybe you have an overflow of all the stress hormones? I use clonazepam for sleep - definitely helps. Good luck!

Not bp related. Is a mystery - I will ask my dr next time I speak to him. Thanks guys!

Many of you kindly responded to a previous post about my week long headache...Well it did go a way and I enjoyed a week headache free. But I have noted a pattern that I would love explained because it makes no sense. When I get a chance to sleep in - sleep late - I wake up with a headache or it starts upon rising. So usually I am up by 6:45 but on days when I get to sleep until 9 or so I have headaches. You would think more sleep would make me feel better. I am sure it is some sort of blood flow issue but it seems counterintuitive. Would love your thoughts!

increase slowly - it takes days to take affect. Should only cause water weight gain - never affected my appetite. It is not like other steriods. Will hopefully make a difference!

Headache has passed for now.... One day last week after I had read about dr. levine's exercise regime I hauled my sorry butt off the couch and did 10 minutes on a the recumbent bike and felt better. So I think sometimes lying down helps but other times I need to get the blood flowing back to my brain....who really knows?! Hope everyone is having a pain free day.

Hope Mack gets better soon....

Hello

Checking in...I have had a head ache for days. If my head doesn't hurt it feels full and fuzzy. Lack of blood to head I guess because my bp is ok. Anyone else have this that goes on and on....thanks

The folks in remission are out having fun and not checking the website! I have been on and off for 4 years and some folks just disappear and I like to think they are all better and have moved on ?

dx at 42 now 46. dx with Lyme last year and still being treated for that...hope that might turn things around.

I drink trader joes chicken or veggie broth. You get used to it!

I hardly come to website anymore...so tired of pots...but did today and saw your post...

I have found nothing helps the fatigue - it comes and goes. However it is true for me that my tachycardia and bp can be well controlled and I can still feel terrible. The blood flow issues are still there - headache or fuzzy head, cold extremities, bloated belly etc. Florinef and salt of course help but it doesn't solve all my problems. I logged on today because I am feeling sorry for myself and this marathon headache I have! I don't give in totally to the exhaustion. I do some form of exercise several days a week (walk, lift a few weights or some yoga) and I have 3 kids and a very part time job and a house to take care of etc. so compared to some I am quite active. However for me, and the way I lived before pots, I do soooo much less. Most of my exhaustion feel like my head is tired. I just want to put it down! My friends see me drive through town with my head up against the window. I also feel mentally tired - noise, too much chatter, reading,....those things can be hard. But I have learned to ride the low tide because a wave of energy will come again at some point.....

Hang in there.

I say to myself all the time: this too shall pass.

Hi

My bp varies a lot too. I make med adjustments and then whoops I am too far in the other direction. So now I just try to ride it out and rest when it is too low or two high. It is very tricky especially if you are taking beta blockers (lower bp) and florinef or midodrine (raise bp) and then add in a screwed up nervous system as well.

When I was at BI the dr was not involved with my TT - a researcher conducted the test. But maybe that is because it was ordered by a different dr from a different hospital. But I have had plenty of clueless drs in my life.

Would any of the Boston area folks ever want to meet for a little support group? I have often wished there was one....

Rachel -

Have you ever been tested for Lyme or other coinfections?

Hope today is a good day.

lina

Hmm... had been able to wean down to very little florinef and then had to add back in as symptoms flared - maybe that was the cultprit. It is such an awful feeling. Thanks for your responses.