Confused To Be Honest

[Achilles2323]

M

24 years old

6 feet

170 pounds

have Gilberts Syndrome

Have 1st degree heart block

know i have POTS

honestly i dont know what to make of this? i was fine Christmas happy and healthy and 5 days later i cant get out of bed without my heart rate going from 80 to 160 just upon standing

i was at LIJ in NYC for 1 week and they told me i have POTS

they put be on atenelol and doxazosin

so far it is working for my heart rate and it is stable

but i still feel weak, dizzy short of breath and lightheaded

i am wondering can pots ever go away?

i feel so miserable at the moment i dont know what to do, i played sports my whole life and this is just tearing me down.

if someone can help me and tell me what helps them and what hurts them personally with there pots like foods drinks and other things.

[imre]

Fellow 24 m athlete here. I've had pots for about 9 months. To be frank it is a difficult journey. I've never heard of Gilbert's syndrome and do not know what a heart block entails. However, as far as pots goes, an athletic guy like yourself should keep up the exercise. Only when I started taking my beta blocker, nadolol, was I able to start running again. I'm not where I used to be athletically but I think eventually I will get back to it.

It's a step by step process and you need to build yourself up. At first, I couldn't do anything. Now I am driving, working and doing cardio every day. It's baby steps man, everyday just try to acheive something more. Eventually you will get stronger. There are much more experienced people on this forum then me who are doing a lot with there lives and handling their health like champs. Do not let this illness beat you. Seriously, fight through it, it is worth it. The earlier you start the better.

There is a point of overdoing things, which I have experienced on several occasions. At this point it is important not to panic and not let yourself get frustrated. When it all becomes too much lying down and reading a book for a few hours calms you down. It actually helps potsies a lot to just lie down until things become a bit better.

Again I am not sure about your other conditions so consult your doctor before exercise. Try not to despair, unexpected things like this happen and you are not alone.

[imre]

Oh, as for food and drinks. It's basically just eating healthy, ie not eating fast food all the time. Also, hydration is very important. I'm sure you've heard this. Drinks like water, Gatorade and coconut water are good but any fluid really. Except alcohol, that exacerbates symptoms.

The main site dinet.org is a good source for info as well. Also, this forum is pretty helpful.

[Achilles2323]

thank you so much for your help

i am just lost at the moment =/

[Angelaintexas]

Hey. 24 to F. I've had POTS for just over a year. And I am a paramedic and Zumba instructor. I had to quit working completely and am most day bed ridden for the last 7 months. I am very envious of anyone who can do any form of exercise!! Lol . A lot of people feel better when they exercise, but not me. Will it go away?... 'They' say that since we're young we may possibly 'out grow' it. And a lot of people do. ) -most people fine medical treatments that work for them and give them some quality of life back. ) be patient with the medicine, and do EVERY LITTLE THING your dr reccomends. -BUT if you don't feel like something is working, say so... There are other things he can reccomends. Also try to find a specialist, I have to drive/ ride 5 hours to see mine, and have to stop numerous times because I can't sit that long. We even have to get a hotel sometimes. But it's worth the trip. Good luck to you. )

[Angelaintexas]

Oh, and I'll tell you like my dr told me.... It's gonna get better before it gets worse, so try to be ready for it. -I know, not good news. But with new medications and unknown side effects and all of the other symptoms that go with the dysautonomias ... Research, so you can recognize something and stop it before it develops more. )

[Chaos]

Welcome! Sorry to hear you have a reason to be here.

Was just talking to my nephew's girlfriend last night who was telling me her sister has POTS. She's 22. Got it a couple years ago after mono, but seems to be doing great now. Is off all her meds and going to school, working etc etc. So she seems to be one of the success stories. Hopefully you'll be there in awhile as well, but it's really frustrating in the meantime.

Hopefully they gave you instructions about increasing your fluid intake, salt loading (if appropriate), increasing cardiac exercise slowly as appropriate, etc besides just throwing the diagnosis at you?

Hang in there. We're here for you if you need support and encouragement.

[abbyw]

I see I am not a "newbie" to you guys, so I will try to make you feel better

I am a 38 yo F. Also sudden onset last year. Try to get to a doctor who is knowledgeable about POTS. I personally, don't have one, but the information on this forum gave me enough knowledge to go to my doctor and try different things. I personally did not find that increased fluids and salt did anything for me and I couldn't do any exercise once this hit me, but now I am taking an SNRI, and I am 95% back to myself. I am saddened that this happened and I still struggle with the knowledge that I have to deal with this, but I am a functioning mother, wife, and employee again. So take heart, there is a really good chance that with proper treatment, you will get your life back!

[Achilles2323]

its gonna get better before it gets worse?

are you sure ?

that's not helpful to hear that

[Achilles2323]

so thankful for all the support on here

just hard rite know

[Altruism]

I truly hope the user meant it's gonna get worse before it gets better, otherwise it's pretty discouraging.

[Achilles2323]

yea i agree that hurt 2 hear =/

will it get worse before it gets better i am hoping so =/

[Achilles2323]

its hard 2 imagine any worse then this =/

[peregrine]

I haven't heard that from my autonomic nervous system neurologist - both she and my current neurologist just describe it as something that's not likely to change too much for better *or* for worse. Not something progressive in most cases (as far as I can tell), just something you have to learn to live with and treat as best you can. I would definitely suggest being reasonably forward with your primary care doctor about seeing a specialist and getting treatment - trying various medications, taking the more conservative treatments like compression and extra water, etc. No point in waiting when you already have the diagnosis. Staying active if you can is always a good idea, but be mindful of not pushing yourself too hard with daily activities (learn to keep an eye on your energy levels so you know when to rest).

(I'm late 20s, symptoms started two years ago now and I finally got my diagnosis a year ago. What a relief for me, knowing that it wasn't something physically wrong with my heart - but I have other chronic health issues, so "one more chronic health issue" isn't the blow that it is for some folks. Pre-diagnosis I was pretty active - and still am much of the time, although active = walking to work, not extreme sports or jogging or anything - but definitely not deconditioned. I take a variety of prescription medications, wear stockings, drink plenty of water and take my salt; although I'm not 100% back to normal, I am able to function better than when I was first diagnosed.)

[Achilles2323]

i was really hoping to hear that things do improve and in some cases go away for the most part

i guess no 1 here has had that success ?

[badhbt]

Pots hit me about 10 years ago. The Doctor's thought I had MS, but everything came back normal. After a couple months my symptoms went away completely. I lived 10 years symptom free...it was awesome. I had the same symptoms hit me in August and I was diagnosed with POTS in November. I am hoping it will go away again....not soon enough...lol.

Keep your head up and try to fill it with positive thoughts. I know it is hard. You will get better.

[Achilles2323]

thank you so much

good 2 know it can go away

i am praying mine will as well

you feel better miss

[k&ajsmom]

Hi Archilles,

I wouldn;t live in a state of fear worrying if its gonna get worse. Yea its a possiability, however nothing in this world is predictable. I seem to have had this since birth or shortly after. By the time I was in kindergaten I was passing out everyday like clockwork. It eased off for several years while I was a teenager. This proves noone is the same. You'll read a lot that it is sopposed to worsen for teenagers going through rapid growth spurts and for me it got better so everyone is different and unique. It hit me again hard and much more problematic this past june, right before my 31st birthday. I was healthy and in shape and had a rigourous job so I dont think its connected for the most part to anything I did. I think what ever is causing yours and mine will determine the outcome, or there are those that have idiopathic Pots that improve quite well without a cause being found.

Myself, I have stay positive, which is easier said than done, but honeslty because Pots effects or is generated by the same nervous system that effects anxiety, I feel that if you dwell on the unpredictable and add to your anxiety it just makes things worse. (easier said than done, right ) I have a hard time with this and its literally a battle but I wake up everyday and forcefully say, I refuse to lets POts run my thoughts today and it helps.

I have found a few things to be helping, maybe not consistantly but a little here and there. Monitoring what I eat and drink. Keeping a journal of intake and symptoms to see if anything makes me worse or better. I take a few meds which are in my signature that help a little. ( I suspect I have mast cell issues after keeping a journal and some wonderful advice from othersa on here ) As far as exercise, I cant really do that yet but any movement helps, after I push through the inital dizzies and tachycardia I can keep moving for a while till I get flushed. Then I rest and do it again. Being imobile was my worst mistake. I have been bedridden on and off and evrytime I am it makes it harder to get up again. I feel if I hadnt been hospitalized and made to lay down for 2 weeks I would be better off now.

Im sorry I dont have any words of wisdom here since I am still figuring this out myself but hang in there, its trial and error for all of us. Stay positive and take care - sarah

[Achilles2323]

thank you sarah for your words and story

every little bit helps

[Relax86]

Achilles I got better. I had my first POTs flare in 2009 - lasted about 6-9 months. I was better before I figured out it might be POTs. I stopped snooping on this forum then put it behind me. I had another flare in Jan of 2012 and it was a bad one. It's taken me a year to get better but I did. I'm about 90% improved and happy with my progress. I always hope to get to 100% where I'm not always thinking of a relapse but I'll take the 90% for now. I'm 44 yo Female. I had a lot of bloodwork after my flare and I think that made me worse. I also delayed trying to exercise as I was thinking something was wrong with me and I think that was a mistake for me. I'm a low BP POTs and now I know that midrodine helped and hydrocortisone helped. So I'm learning about my response to POTs flares. Do your best to stay optimistic. Read this forum and watch for the people who have come before us and educated themselves. The information relieves our systems to mentally know we are not alone, we are not crazy and we are not dying - because POTs feels bad and scary. Celebrate baby steps and improvements even though they might be temporary - progress will come. For me the sooner I pursued activity and exercise the better I was. When I over did it I did pay but the payoff was greater. Good luck.

[Achilles2323]

man thank you so much

=)

this is helping my mood at the moment

[Achilles2323]

!!!!

[Chaos]

Achilles- Remember that a lot of the people who got better- aren't on the forum anymore. They're off living their lives and don't check in here anymore. TXPOTS is one is particular who did really well with an exercise program and is (as far as we last heard) doing great.(You can probably search this forum for some of her old posts.) Some others have had luck pursuing traditional chinese medicine treatments. So a lot of people DO get better. Keep your chin up! As my POTS neuro keeps telling me...if I were younger he'd be a lot more optimistic about my prognosis. So you have that on your side at least!

[Achilles2323]

thank you so much

i am gonna keep it +

my arms are killing me out of no were?

dnno why? can pots do this?

[misstraci]

welcome and sorry you feel so terrible, most of us here do as well, that's why we're here and so we can relate to what you're going through. I think what someone said earlier was supposed to be "things get worse before better" because the other way around doesn't make sense. Also, people DO get better and also like someone else said, they don't come on here anymore. I even find myself to be this way, if I have a good day or days (rare) I won't come on this site. I can imagine if I felt great for awhile, I'd more than likely steer clear of this altogether. I think the key to the getting better part is finding what has caused you to be ill in the first place and then fix that root issue. POTS is no more than a collection of symptoms, it's not a disease in itself so fixing a deficiency or imbalance for example is going to restore your health and ax the pOTs. I hope you find some answers and some relief. Not sure about the arms hurting thing. Keep us posted on how you're feeling!!!