New Here

[Holly]

HI everyone,

I found this wonderful website through an internet search. I've been reading a lot here and decided it was time to post. I was just recently diagnosed with POTS. I had laproscopic surgery for endometriosis at the end of June and my symptoms started in early July. Thankfully I was sent to a great cardiologist who suspected right away it was POTS, so I was diagnosed only about two weeks after symptoms started. I'm really struggling with this illness, as it is all new to me. I have dizziness, nausea, tachy, sleep problems, blurry vision, tingly sensations, brain fog, and extreme fatigue. I am on a high salt diet, lots of liquids, compression stockings, Midodrine and swimming for exercise (when possible). I know there are some folks here who are far worse off than I am, but I am still struggling. I feel like my life has changed overnight and things that I used to take for granted are now far out of reach. I am grasping for any straw of hope, to help me get through this. My cardio said that 80% of folks who have sudden development of POTS get better within a year. I have read differently in some posts here, so I know that is no guarantee. I don't know if I need to hope that it will go away or just focus on getting through each day. I just feel lonely, scared and discouraged. Every day is so long and such a struggle to get through. I have to continue working to maintain health benefits, which is tough. I know I need to find and maintain a positive attitude and I just don't know how to get there from here. Anyone have any suggestions? They would be much appreciated!

[BEE]

Just wanted to say hi and welcome Holly..POTS is definitely difficult to deal with..I try and manage as best as I can. I have had it for about two years now. I know that i have gone through phases with this emotionally and physically. At first it was very hard to deal with the symptoms and now that I know more of what is wrong with me it has made it easier. Of course you have your bad days.

I think that this forum has helped me in many ways to cope and know that I am not alone. I used to post all the time when I first got sick and now I kind of stay in the shadows and learn.

Take care and keep your head up..Bee

[Dizzy Dame]

Hi Holly, welcome to our little corner of the world!

I think what your doctor may have meant is that 80% improve within a year, but improvement doesn't mean complete recovery. Most do improve within a year of onset. I went from being bedridden to being able to attend school part-time (1-2 classes) and occasionally go out to eat with friends and the like. So keep you chin up, if your symptoms aren't too severe now, then hopefully you'll make an even greater recovery.

I can relate to your feelings of fear and confusion. When I first got sick I was terrified as well. I've found the best way to feel better about my illness is to arm myself with knowledge and a good mental attitude. The more one knows, the fewer questions they'll have.

Good luck in your treatment. Midodrine is a great drug for many, so I hope it really helps you!

Cheers,

Lauren

[persephone]

Hi Holly,

Everyone is different. What works for one person may not work for another. But there ar elots of things to try. Having good doctors is really important, and it sounds like you do. You may well get better within a year- I have cycles of complete remission, although I seem to crash again afterwards, every few months. They've told me that most post-viral POTS people (I'm p.v) get better within 2-5 years. It's about managing it- like diabetes or migraine. If you can control it, it won't impact on your life half as much.

Good lucK:)

[bttrflyamby1981]

Hi Holly!

Welcome to the forum!

I can relate to you as well, your not alone hun.....(((HUGS))) I'm not 100% that I have POTS, but I have been dealing with it for over 3 years (the symptoms anyway) I can't say I have gotten any better, but I'm functioning and I don't think I've gotten worse so that's good.

Take care,

Amber

[Kimba]

Hi Holly,

I am new here too. I got sick in March and was diagnosed in June. One Neurologist's PA told me to do everything with lifestyle, meds, etc but not to look for ANY indications of improvement for at least a month. She said most likely I would just look back one day and realize I was better then I was before.

I think this it turning out to be the case. I am not "cured", but am making progress. It has been helpful to arm myself with knowledge so that I can have conversations with my Dr's. I am being vigilent about understanding this and trying to figure out what is going on, and I think that is helping my recovery.

I am learning that previously undiagnosed migraines seem to be really impacting my head fog, nausea, etc as well. So I am hopeful treating those will help.

I am less discouraged than I was before, and think I will continue to improve. I have found that a lot of the literature is very "doom and gloom", but that then there will be stats buried in there like the "85% - 90% get better" thing you quoted.

At the Cleveland Clinic office I go to for POTS (so they see a lot of folks come through there with it), some nurses indicated that they see about 1/3 of their patients get better and have few / no problems later. Another 1/3 seem to be able manage it OK, and the rest have more difficulty.

I think you can work for and hope for the best, as it seems people can recover and have their lives minimally impacted by this as time goes by...some fully recover too! I have also found that keeping a daily symptom log is useful - it helps with Dr.s appointments and it helps me track improvements, when they started, how far I have progressed, etc.

Good luck...

[corina]

hi holly, welcome around!

i wanted to compliment your cardio. i don't think anyone else has been diagnosed this fast!!!! i am really glad that you didn't have to deal with doctors who are treating you like you're a nutcase.

i just take one at a time and don't think too far from now. that works best for me. i hope this site will answer all your questions. it is a tremendous help for all of us (especially this forum: it makes such a difference to talk to people who are in the same boat!!!).

corina

[mom4cem]

Welcome.

Glad to hear you had a dr. who suspected it right away without you going through months or years undiagnosed. Hopefully the sooner you started treatment you may be able to halt or manage these symptoms well.

Welcome again.

[marnian]

Hi Holly!

I'm pretty much in the same boat you are so I sympathize! My symptoms also started and were diagnosed this summer. It's been very stressful on me, but the medicines are starting to work and at least I'm home now (I was in the hospital for much of July). I've found it's even harder on the people close to me since they have to try to live their normal lives at the same time too. I'm lucky in that my job has short-term disability that's covering me for now. I've found that watching my favorite movies, reading information online, and playing simple computer games helps with the stress. I'm still going to the hospital many days for tests, but at least I get to come home in the evening.

On the positive side though, Maybe these recent quick diagnoses means the medical community is learning more about POTS!

[SunsetParadise49]

Hi Holly and Welcome! !

I'm glad you found us and had a quick diagnosis. I too had a really quick one. I passed out early in the morning and by noon time, my family doctor told me that he thought I had NCS...just needed some testing to make sure.

[Guest malosp]

HI everyone,

... I was just recently diagnosed with POTS. I had laproscopic surgery for endometriosis at the end of June and my symptoms started in early July. Thankfully I was sent to a great cardiologist who suspected right away it was POTS, so I was diagnosed only about two weeks after symptoms started. I'm really struggling with this illness, as it is all new to me. I have dizziness, nausea, tachy, sleep problems, blurry vision, tingly sensations, brain fog, and extreme fatigue. Anyone have any suggestions? They would be much appreciated!....

Hi Holly,

Welcome to the forum.

First of all let me say that anyone who posts to you here is just giving their opinion not a diagnosis.

I just know that whenever I see the symptoms you describe...dizziness, nausea, tachy, sleep problems, tingly sensations and especially brain fog...I always remember that those are the symptoms that brought me to this forum also.

I am just want to put it out there that lyme can cause those symptoms. POTS is group of symptoms and can be caused by many things including lyme.

There are a few members here - actually about 4 or 5 that I can think of - that did find out they had lyme.

The reason why I am telling you - is because I would have liked someone to point out the POSSIBILITY of lyme - and then have made up my own mind if I wanted to proceed.

If you do have lyme, you would be catching it relatively early, and thus have a better chance to heal faster etc.

Please at least look into lyme as a possible cause of your POTS. Research as proven that POTS can be caused by lyme.

Lyme tests are not accurate and you could have lyme and never remembered a tick bite, a bullseye etc. Then it comes back after surgery or some stress brings it out. You mentioned surgery.

And there are people on this board that will tell you they didn't find out they had lyme for years after starting posting here. Getting it soon is good. You can go on the neurology section (it is an education site not a support forum) on med help and you can read about lyme and all the common symptoms. Use their search engine on med help neurology forum and key in lyme. There will be one post called "? lyme despite negative testing". Read that.

You defintely could have something else like a virus ...who knows... but at least think of lyme. I hate to see anyone else go through what others have.

Take care

[AJVDK]

I just wanted to drop a line and say Welcome! I am glad you found us!

[Guest dionna]

hey holly welcome to the forum. i hope you find it useful. i hope even more that yours does magically go away. take care in the mean time.

dionna

[micky2]

Hi Holly.

I am pretty new to POTS and very new to this site. I had a pretty quick diagnosis as well. I had my baby in July, felt symptoms in September and was disgnosed with POTS in March. I too went through what you are going through. I am a fast moving individual with a fast paced job requiring multi-tasking and lots of decision making (advertising). Having POTS made my life and job so difficult.

At first, everything I used to do normally, I couldn't do. Planting flowers caused me to be in bed for 2 days. At one point, I had brain fog so bad, I was driving and when I "came to" I was in a different city and had no idea how I got there. Thank goodness I was by myself without my kids in the car. I cried alot. My positive attitude went down hill. I too felt exactly what you explained... lost, scared, and "will I ever feel normal again".

Now, a year and a half later, I rarely have symptoms for POTS. (Although, my doctor is trying to control my heart rate, which is making things worse rather than better, but that's a different story.)

I don't have great advice seeing as I am new. But, for me it's all about management. Eat lots of salt and drink LOTS of water! (I drink about 3 lliters a day.) I drink Gatorade as well. Knowing limitations is key. Prepare for big events by taking it easy before. I can still plant my flowers. I just have to go about planting differently. I can still go out with my friends, play with my kids, do all of life's enjoyments. You just have to prepare and think differently. It has to be a life change. My POTS came along suddenly, like yours. And 1 1/2 years later, I feel like I have my life back (aside from the heart rate issues).

This site has helped me out a lot, along with a friend who has had POTS her entire life. Reading and learning helped me control this. You can too! I have a few things that helped me that my friend with POTS wrote me at the beginning. I can type them out, but I would rather in an email. So, if you want to hear them, I can type or copy some of my friends emails to you.

Take care of yourself.