Newbie - I think I'm POTS?

[jesse1919]

Hello,

I'm new and I'm so glad I found this forum. I'm sorry to see so many sick people but maybe we can help eachother. Well, here's my story...

I'm 27 male. I got my masters in engineering and have been working full time for a couple years. I was perfectly healthy (except ADD which was under control) UNTIL I woke up one day 3 months ago and I was soooo tired. I called in sick and figured I had the flu. I hadn't been sick before this for a long time. I didn't have any other symptoms- just dead tired. I tried to go to work the next day (afternoon) but I just felt so sick. I was seeing stars after walking slowly up one flight of stairs and decided I better go home. I slept a ton and was eating fine but didn't feel better so I saw a doctor later that week. She did all the basic tests- chest xray, blood, urine- but had no idea except maybe my ADD med (Strattera) was causing it. I thought that was crap becasue I never had a problem in the 2 years I was taking it. So she sent me to an endo. The endo did blood sugar, thyroid, and cortocotropin stimulation test- all normal. So she told me to eat my vegtables and excercise. Excersise!!! I can hardly stay awake after 12 hours of sleep! So I went to a infectius diseases doc. He tested for mono and lymes - negative- and had no other idea. So then I said enough's enough and went to Mayo in MN. I didn't have a referral for Mayo so I would have had to wait 8-12 working days, sitting in the lobby all day every day except 3 of those days until there was an opening, BUT while I was talking with the triage nurse my pulse was 130. She sent me to the ER where they did EKG (normal of course) and tested orthostatic pulse/ pressure which changed alot but they just gave me a saline IV and let me go. They did schedule a follow-up appointment the following week so I avoided the usual wait by going to the ER. While I didn't like the Mayo doc's lack of concern (just like the other docs), she tested everything- head MRI, more blood tests, 24-hr urine for pheochromocytoma, phychiatrist, tilt table and echo. Everything was normal except the tilt table- which wasn't very fun! Laying down pulse 120 press 130 (over?) standing pulse 150 press 105 (over?) I blacked out for a second when I did the breathalizer thing laying down. I didn't faint upon tilt but felt like crap. The doc said that either I got a virus or it's my Strattera causing me to be too sensitive to my own adrenaline. She gave me Toprol, said I should eat lots of water and salt, try to walk more, go back to work part time, see a local doc to adjust medication and see a neuroligist if I don't get better.

Well, that's my story to date. I'll add more and read more tomorrow when I'm more awake. Take care.

[steph37822]

oops

[vemee]

Welcome to the board. I am surprised Mayo did not do follow testing to see if you are allergic to your adrenalin. I would think they also would have done blood volume and hemadynamics tests. If your tachycardia is from pots there is a good chance the beta blocker alone will give you more orthostatic hypotension. Keep an eye on how you are feeling and don't hesitate to go back to Mayo or one of the other places that test for pots like the Cleveland Clinic.

[jesse1919]

Hi. Thanks for the responses.

Wow Stephanie I guess I should be 'glad' I didn't get POTS in college. ADD kicked my butt enough. I know all about experimenting with meds- think I tried 8 for ADD. A gallon! holy crap I'm gonna grow gills I'm doing maybe 1/2 gal without much effort.

Mayo sort of left me hanging. alergic to adrenaline? never heard of that. I wish they would have done those tests. The doc signed my FMLA (family medical leave act) form finally but that only allows for 12 weeks and that runs out in a couple weeks so I'm suposed to go back to work part time- but I still don't feel much better. I need to find a doc in CA to work with meds etc. (I'm at my parents in WI now.) There's one listed in dinet faq thing but naturally he's not listed in my insurance and downtown is an hour drive in traffic- I'll call anyway.

Yes- it's only been a week but Toprol (beta 1 blocker) seems to make me a bit more tired/ brain fog if anything. Maybe a nonselective beta 1 and beta 2 blocker would work better because it would help constrict arteries/veins not just slow pulse so BP stays higher???

- Jesse

[KathyP]

Hi Jesse;

Welcome to the forum! I've had anxiety attacks for the past 10 years which alerted me to something being wrong. I finally started getting the answers I needed only 2 1/2 years ago. I can also understand the fatigue. I've had that, non-stop, for the past few months.

Stephanie pretty much hit it all on the head!! Water, water, salt and try to exercise. We all know how hard it is to exercise when you don't have the energy to get out of bed.

I was diagnosed with Mitral Valve Prolapse/Dysautonomia. I also have POTS. It can get very frustrating to figure all this out, but you sound like you, at least, have a hold on things. Plus, being here should give you comfort in knowing that you are definately not alone. I'll be looking for you again soon.

Take care!!!!

KathyP

[EarthMother]

Welcome Jesse,

As always wish we could all meet under other circumstances. But knowing we are not alone in this journey is truly wonderful. Thank you for sharing your healing adventure. Keep in mind that it is possible for this sudden onset to leave just as quickly and unexplained as it came. Tune in to the possibility and watch what wonderful things happen next.

Good luck,

EM

[funnyfrog]

Hi Jesse - Welcome to the group!! I hope you are getting lots of info on here that will be helpful to you - The fatigue from POTS is one of the worst symptoms - I can sleep 12 or 13 hours,take a nap sometime during the day and I am still tired. I too worked f/t before I got sick, exercised, and was pretty active - This all hit me 3 years ago when I just turned 33. Its a real eye opener to be young and feeling ok one day and black out suddenly and feel crappy ever after. Like Earth Mother said though, the hope is, the same way this appeared, maybe it will disappear one day. The meds also have side effects that leave you tired, so sometimes its hard to distinguish between whether its the POTS, the meds,or in my case also Epstein Barre virus too making me feel so tired. At night though like now, I am full of adrenaline, pumped up with nowhere to go and am a POTS insomniac until about 2:30am usually so that is why I am on here so late typing. I drink lots of gatorade, sometimes I add water to it to dilute it a little just to get more water in since I hate the taste of water alone and now with the warm weather approaching soon, make sure you stay hydrated, cool and do not overdo in the heat of the day if you can help it. I hope you have a great weekend-Beth

[steph37822]

oops

[jesse1919]

Hi all,

Sorry it's been awhile- I had a bunch of other little things to take care of and there's just no time in the day when you're sleeping through 1/2 of it!

Your right Steph, I would get the best care if I grew gills! I think I should grow a tail while I'm at it. You're right about side effects of meds, but I figure it's worth a shot.

Beth- wow sounds just like me except I wouldn't say that I "can't" sleep at night, I just don't want to go to bed because I actually feel best just before bedtime. I think that's because my pulse is lowest then because my adrenaline is naturally higher during the day and drops at night. If I'm worried or anxious at all then I do have a hard time falling asleep.

EM- nice to meet you. hope you're right about it disappearing suddenly.

KathyP- sorry it took so long for your diagnosis. 2 months seemed like a long time for me.

I am feeling better now that I'm drinking alot and walking more. I really didn't think that would help as much as it did. My OI is pretty minimal and I usually make it through the day without a nap. The only thing that hasn't changed is sleeping 12 hr/ day. Hopefully time and/or meds will help that too.

Well, I have big things ahead of me. I'm flying back to L.A. tonight. I'm not looking forward to flying. It was not fun on the way out but it should be better this time I hope. Then I'm going back to work part time starting Thurs. I think I'll be able to handle part time. I'm just worried that I won't get back to full time and I won't be able to afford my apt by the beach and I'll have to quit my job and move back in with my parents and never have a girlfriend again and die alone.... but maybe I'm getting a bit ahead of myself? I'll try to survive my flight first. Wish me luck. Talk to you all later.

- Jesse

[steph37822]

oops

[jesse1919]

so girls don't like gills or tails huh? I guess I can't say that I don't know anything about women now.

I survived my flight and my 1/2 day of work today. Your right, it's about baby steps. Your outlook is comforting Steph

I'm assuming I'm hypovolemic but haven't had a specific test. Salt + water does help my OI. I'll keep Procrit in mind. Injections sound like a pain (figurative). How often did you need them?

The Pacific says hi.

Jesse

[steph37822]

oops

[jesse1919]

Hi Steph (and whoever else)

Wow it's been awhile. I guess that's a good sign? I suppose people do get better and disappear from the list? I'll try not to.

So I worked my 3 hr/day this week without being too horribly tired. Yeah! I feel like having a party... a POTS party... I'm picturing a room full of POTS people sitting on rolling chairs scooting around the room and a big punch bowl of Gatorade spiked with salt. It still feels like Friday though- glad it's the weekend. I worked afternoons. I'm going up to 5hr/day next week so I want to get there by 10... but that's really early. I do feel much better than I did a few weeks ago. I'm not napping and headaches are pretty much gone. My tachy's the same though so I know that my body isn't really fixing itself.

I ended up going back to my original GP to get my records and she asked what happened with me and I nutshelled the whole Mayo/ POTS saga and she gave me referrals to an electro-cardiologist (?) and a neurologist. I'll see the neurologist in 4 weeks. I didn't really ask about seeing her (the GP) for follow-up because she immediately said I should see a specialist and she said it's 'esoteric'- that's for sure! For the time being I'll just wait to see the neurologist.

Thanks for all the advice Steph. If you were a doctor I'd owe you about $5000 by now I thought that you still weren't able to get the Procrit- good to hear that you're getting it. I felt so bad for you when you told your story originally. I can't promise anything but I'll talk to the Pacific about the weather. I am from WI so for what it's worth I know what 'real' weather is like. Maybe we could trade: some good weather for some traffic, high rent and fruity people??? I'll even throw in some palm trees for free.

Jesse

[steph37822]

oops

[jesse1919]

Hi (Steph)

Happy Birthday! I'm 27 too for another month. Hope you had fun. So you like to partake huh? Maybe it's you who has gills! I do too on occasion but now it seems that I 'pay' twice as much as I did before

Well, I survived work ths week. I didn't get in before noon but at least I made it. I actually got some work done too. Everyone says it looks like I lost alot of weight but I didn't lose more than 5 lbs. I'm pretty skinny to start with though. I guess you are too Steph- saw your pics. Thanks for sharing. I'll post when I find a decent one of me. Did you lose weight from POTS?

You're right about my GP- I was disappointed. I hope the neuro can help me. It sounds like you hit the Cardio-Dysfunction Jackpot Steph I guess that just means there's more room for improvement Good luck with your docs. So what is your situation? You're Procrit is working for you but you still need better docs? Are you working at all? You had to quit before right?

I emailed the doc that's running the POTS study at syncope.org to see if I can do it. I think it could help me figure out how to treat my POTS. It's all the way in NY but I think I can handle the flight ok now. And they actually pay you $300

My ADD med will probably exclude me from the study though and I don't want to stop it again. We'll see.

Getty Center! Sha! Whatever. I like rock and roll but come on. How about Staples Center?

Well, I must get to bed... so tired because the movers came at 7:30 for my roommate's stuff. She's gong to AZ. I have the place to myself for 3 mo. max and then her new job stops paying her half of the rent. Do I find another rommate, get my own place or move in wtih someone??? More stress! More tachy

Have a good weekend

Jesse

[steph37822]

oops

[TOSam25]

Hey Jesse,

I am 25 and was also told I have POTS around the same time in Feb of this year. I was reading that you will or might be going to NY and getting 300 bucks towards it, I am going to be doing the same thing I think, is it with the new york medical college too? Just wondering...

Sam S

Hi (Steph)

Happy Birthday! I'm 27 too for another month. Hope you had fun. So you like to partake huh? Maybe it's you who has gills!  I do too on occasion but now it seems that I 'pay' twice as much as I did before

Well, I survived work ths week. I didn't get in before noon but at least I made it. I actually got some work done too.  Everyone says it looks like I lost alot of weight but I didn't lose more than 5 lbs. I'm pretty skinny to start with though. I guess you are too Steph- saw your pics. Thanks for sharing. I'll post when I find a decent one of me. Did you lose weight from POTS?

You're right about my GP- I was disappointed. I hope the neuro can help me. It sounds like you hit the Cardio-Dysfunction Jackpot Steph  I guess that just means there's more room for improvement  Good luck with your docs. So what is your situation? You're Procrit is working for you but you still need better docs? Are you working at all? You had to quit before right?

I emailed the doc that's running the POTS study at syncope.org to see if I can do it. I think it could help me figure out how to treat my POTS. It's all the way in NY but I think I can handle the flight ok now. And they actually pay you $300 

My ADD med will probably exclude me from the study though and I don't want to stop it again. We'll see.

Getty Center! Sha! Whatever. I like rock and roll but come on. How about Staples Center? 

Well, I must get to bed... so tired because the movers came at 7:30 for my roommate's stuff. She's gong to AZ. I have the place to myself for 3 mo. max and then her new job stops paying her half of the rent. Do I find another rommate, get my own place or move in wtih someone??? More stress! More tachy 

Have a good weekend

Jesse

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[jesse1919]

Hi Sam. Welcome to the forum. The study I am trying to get into is by Dr. Julian Stewart

Local Vasoconstriction in Postural Tachycardia Syndrome

- I believe it's the same you are talking about. We just exchanged a couple emails so far. Have you gotten in for sure?

Good luck with your 'roommates' Fatty. Right- you mentioned your ankle surgeries. Talk about orthostatic intolerance huh? Well, I hope you get better soon. I guess you have to be in a lot of studies to be a pro patient. Keep up that 'denial'. Drinking helps you huh? I guess I just have to reeealy focus on hydrating before/ after even more than I did prePOTS. I've always had a fast metobolism too- even faster now with the tachy.

So you go (went) to the gym huh? I have a membership but haven't bothered going since POTS. I suppose I could do some lifting laying down like bench press and leg press. Or maybe even sitting stuff too. I don't know about jogging though. Doesn't working out make you super tired? Well, you know I thought the same way about walking 1/10 mile before and walking did make me feel better so... maybe I should go to the gym.

Yeah Steph I know I'm an old man as far as that NY study goes. I probably will have good luck picking up girls at a childrens hospital because I look closer to 17 than 27

Later,

Jesse

[briarrose]

Jesse

I guess I missed out on your original posts in April, welcome.

So here's my 2 cents. Exercise only when you're ready. Yes the doctor's recommend it but they usually start you out swimming. They tell you not to overdo it as you can put yourself back at square one.

I'm glad to hear that you were looking for a EPS cardiologist, you'll do better with them as they have better understanding.

I know that every State is different but I did want to add that I saw a lawyer when I turned in my FMLA paperwork. The lawyer advised me that I can take over 6 months off a year if needed, without being terminated. I live in Oregon so I'm not sure what Cali's laws are. It sounds like you're doing well enough now that you don't need to worry about it though.

Did you ever find out what your blood count was? I too use the Epogen injections with IV Iron and it's very beneficial like Steph said.

Take care in the CA heat as summer approaches. At some point you might want to look at the cooling vests to keep you from overheating.

Steph

[jesse1919]

Hi Steph from OR

Yes I will start slowly with excercise. Swimming makes sense because the water pressure probably helps a little and you don't overheat as easily. I really haven't been exposed to warm temps since I got POTS but I see how that would not be fun. Luckily I live by the ocean so it doesn't get terribly hot.

I have an apmt with a neurologist in a couple weeks. My Mayo doc told me to see a neuro not a cardio so I thought I'd start there. I did get a referral to an EPS cardio from my local GP... but I didn't make an apmt... because.... I'm dumb I guess? It's OK to have two apmts yes? Especially since there's a month wait for a specialist. And I'm not even sure if the neuro knows anything about POTS. Sigh. Guess I have some more calls to make.

No I don't know my blood count (blood volume?). I haven't seen a doc since I got back from Mayo. The beta blocker may me feel worse so I'm just doing salt, fluid and walking. I don't know if I'm hypovolemic or veins aren't constricting or what in particular is causing my POTS.

FMLA is a federal law yes? Well, according to FMLA gov page

an employer is only required to give 12 weeks/ year total but you can use those 12 weeks intermittently. There is also a similar CA law: CFRA The California Family Rights Act. I didn't get into all the details of these. I'm not worried about my job now because I'm working more than 1/2 time and my boss loves me.

Thanks,

Jesse

[TOSam25]

Hey Jesse,

Yes the same Dr. I haven't gotten in for sure yet, I finally got all the other tests they needed and just faxed it all so I am waiting for a reply....

I was told that swimming is the best for POTS people, from what I have read and been told that is, but I haven't tried it yet.

I have both a Nerologist and a Cardioloist that work together to help me with my POTS. They talk to each other all the time and work together towards a plan for me, I think you may need to get one involved with you sometime down the road.

Anyhow...just thought I would give you my two cents...

Sam S

TOSam25@Hotmail.Com (i have msn too)

Hi Steph from OR

Yes I will start slowly with excercise. Swimming makes sense because the water pressure probably helps a little and you don't overheat as easily. I really haven't been exposed to warm temps since I got POTS but I see how that would not be fun. Luckily I live by the ocean so it doesn't get terribly hot.

I have an apmt with a neurologist in a couple weeks. My Mayo doc told me to see a neuro not a cardio so I thought I'd start there. I did get a referral to an EPS cardio from my local GP... but I didn't make an apmt... because.... I'm dumb I guess?  It's OK to have two apmts yes? Especially since there's a month wait for a specialist. And I'm not even sure if the neuro knows anything about POTS. Sigh. Guess I have some more calls to make.

No I don't know my blood count (blood volume?). I haven't seen a doc since I got back from Mayo. The beta blocker may me feel worse so I'm just doing salt, fluid and walking. I don't know if I'm hypovolemic or veins aren't constricting or what in particular is causing my POTS.

FMLA is a federal law yes? Well, according to FMLA gov page

an employer is only required to give 12 weeks/ year total but you can use those 12 weeks intermittently. There is also a similar CA law: CFRA The California Family Rights Act. I didn't get into all the details of these. I'm not worried about my job now because I'm working more than 1/2 time and my boss loves me.

Thanks,

Jesse

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