jesse1919

about vertigo- I had this as a side effect of going off Effexor. I think it was related to the change in seritonin levels. Do you get this sensation by simply turning your eyes side to side? I did. It felt like I was getting thrown across the room. It definitely felt different than being lightheaded. There wasn't any pain though. My guess is this has to do with your inner ear and balance? Have you had an echocardiogram? when they did mine at Mayo they also looked at my carotids. I doubt you could do anything at home though.

Jesse

I can still drink. I usually feel much better at night than during the day and that's when I'm most likely to drink anyway. I feel fine when I'm drinking but as a general rule the hangover is twice as bad- 2 drinks feels like 4 the next day. I try to drink a ton of water before and after.

I noticed this as a side-effect of Midodrine. It's a vasoconstrictor that activates many sudomotors/ muscles controlled by the ANS- veins constrict, bladder constricts, hair stands up, intestines constrict (gives me gas). I noticed the 'having to go a little bit more 10 minutes after I go' issue is reduced if I sit instead of stand when I go (I'm a guy). I think (hope) that as we understand POTS more and develope better treatments side-effects like these will be eliminated.

I think you should mention this to your doc because urination is definately a piece of the neurological puzzle.

I read an interesting article in Discover that I want to share. It's about "epigenetics" which is the study of environmental enfluence on gene expression.

DNA Is Not Destiny

I'm not one to get very excited about nutritional suppliments and the like but this was interesting. It could help explain why some disorders seem to appear out of the blue without an infection or genetic/ family link. An epigenitic mechanism could be altered, causing a normal gene to be turned off or a dormant mutant gene to be turned on.

great post lthomas. good references. too bad the full text pubmed article is $30

regarding SNRIs and SSRIs - my understanding is that these are usually medications that act only (or mostly) on the brain and not the CNS/ ANS. So for example I take the SNRI Strattera for ADHD because (so the theory goes) my brain doesn't have enough NE. But I have POTS so my blood (plasma) NE is probably too high (I haven't had it tested). I don't have any improvement in POTS when I stop taking Strattera so I'm reasonable sure that it's only acting on my brain, not the rest of my body. A SNRI that acts on the body is probably a bad idea for POTS patients. The opposite would make more sense - a NE reuptake agonist? I wonder if the lady with the NET disorder has the same issue with her brain NE? I guess brain neurons and other nuerons are the same? I think she'd have mental issues besides just POTS if her brain NE was too high.

Jacquie - yes, your body releases norepinephrine (NE) into your blood. The amount of NE depends on a lot of things including body position. Normally, a person's blood NE level increases when they stand but in POTS patients it goes way up much higher than normal.

"The finger clip at the hospital simply stops registering."

Yep - happened to me too when standing. It said "noise" and the nurse couldn't feel my wrist pulse either so she used a stethoscope on my chest to get a pulse.

Well, there's no obvious trend in the height or weight - more or less Bell curves.

The gender difference is statistically huge. Some have suggested that the "men don't go to the doctor" tough-guy aspect explains this. If the M/F ratio was 40/60 then maybe I'd agree, but 2/77 ?! No way. As a guy with POTS I can guarantee one thing: If you can't work you will go to the doctor. I have a desk job and I tried to go to work but I was a zombie, could hardly stay awake, saw stars when walking slowly up a flight of stairs- totally worthless. We all know that POTS is serious. It's not a toothache or a cold. I think there is some other fundamental reason for the gender difference.

Well, I guess if a single guy has to get POTS at least there's a 'good ratio'.

BTW- I'm 5'8" (sorry dionna) 140 lbs, fair skin, lost a few pounds since I got POTS, have always been fairly thin and athletic

I was in Albuqurque and my nails were blue from the altitude change. My hands were even colder than normal. My blood oxygen was measured with the "finger squeeze machine" and it was 98% (95% with the "old machine") so I was relatively okay - just a bit blue. Never had a DLCO.

It took me several weeks to tritrate my Midrodrine up. I started with 1/2 tablet (5mg) and worked up to 3/ day in a month. After several months I found increasing to 3.5 tablets helped. Luckily most of the side effects only lasted for a few days each time I increased the dose. It seems stable now and it is definitely helping.

Thanks for the support everyone

An endo? really? I did see an endo before I was diagnosed at Mayo. I did tell her that I'm POTS after but she didn't say that she treats it- I really doubt she would. I'm just going to wait to see Dr. Yan-go at UCLA.

Best of luck to everyone

Jesse

Brief history: I was diagnosed POTS at Mayo in April. Then I came back to L.A. and started working part time again. I have been feeling progressively better and recently started playing volleyball again- yeah! I've been doing salt/fluid, exercise, raise head of bed, trying not to worry/ reduce stress and getting enough sleep. But I'm still sleeping a lot and run-down all the time so I was looking forward to seeing the local electrophysiologist to get some meds started and get back to work full time....

So the EP looks over my Mayo records and asks why I'm there to see him today. I tell him I'm doing better than I was but I'm still fatigued and working part time. He says that from my records he doesn't see why I should be fatigued and I'm not fainting or anything. Yep- no clue about POTS. He said that he had no idea how to treat me and that if Mayo couldn't help me he couldn't either. He said he could hardly even understand the summary from my tilt test "distal postganglionic sudomotor failure..." He told the receptionist to give me my copay back and make me a copy of my records (a good sign that he was at least curious).

I was initially just happy he didn't BS me but as I walked to my car I grew more disappointed. I waited so long to see him. And I DID ask the receptionist to ask the doc if he has treated POTS before but she didn't. I got to the car and remembered that I had a copy of the paper "Deciphering the Sinus Tachycardias" with me. I thought of all you wonderful DINET folks and how sick I was a couple months ago so I walked back in and gave the paper to the receptionist to give to the doctor. Hopefully he'll read it. Well, I guess I'll try UCLA next. *sigh*

Jesse

Didn't have time to really read it properly but it looks like a good article. Thanks Poohbear.

Jesse

Hi Dayna,

It's amazing how familiar some POTS stories are. I also had headaches constantly- usually not bad enough to bother taking pain med but sometimes quite bad. I also had MRIs done for the headaches and it only showed some spot of activity that didn't mean anything. After I got diagnosed and started walking, salt and fluids my headaches disappeared. I'll still get minor ones if I don't get plenty of sleep.

My headaches were mostly pain/ burning behind my eyes and went along with being very irritable- every little sound or bright light or energetic happy people annoyed me. When I got a headache I was usually also tired and took a nap. Napping helped fatigue but not the headaches, in fact I think it made them worse. I found that napping in a chair helped. Trying not to nap by sleeping as much as possible at "night" (like 12-14 hours) helped the headaches and I felt better overall.

I have a theory- POTS people's blood pressure varies dynamically a lot when we change position. Blood pressure droops as we stand but it also spikes as we sit/ lay down. Spikes of high blood pressure can give you a headache too. So I was always careful not to "flop" down on the bed. I sat, then put my legs up then laid down slowly.

Hope you find a solution.

Jesse

Thanks for the posts.

So I called the neuro office to see if he actually knew anything about POTS (like EM said that's not a given) and naturally the receptionist wouldn?t bother to ask the doc if he could treat me, she just canceled my appointment when I said I wasn?t sure if he could help me. I sort of doubt he could anyway so I didn?t argue with her. Of course she never heard of POTS. So then I made an apmt with the EP cardio but that isn't for 6 weeks zeash. And I'm still not positive that this EP cardio knows POTS either- the receptionist said she hadn't heard of POTS but was sure the doctor had. But would she actually go ask? no. I also asked my Mayo doc (another receptionist) for a referral to the UCLA autonomic neurology center- I'm sure they know POTS. I?ll have to wait and see if her highness can be bothered by such trivial things. If not I'll have to try my local doc for the referral, but she's not the one that diagnosed me I don't see her as willing to learn about POTS to treat me BUT I didn't ask either... So the saga continues. At least I'm feeling ok and able to work part time as I wait.

Jesse

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

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

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

I took creatine ("creatine monohydrate") in college (pre-POTS) on and off. I didn't really gain weight but it did help me keep up my energy when I worked out (running, lifting weights) especially at the end when my muscles started getting tired, I didn't drop off as fast. It didn't seem to have any side effects and it was inexpensive. The powder/ crystals don't disolve well so I would just dump a scoop in my mouth and wash it down with water. It doesn't have a strong flavor. I know salt helps so it's reasonable to think creatine would help too... I'll give it a try.

Jesse

PS hold on... no way! I still have a ton of it in the cupboard! It's gotta be 5 years old. I guess it doesn't go bad? Wish me luck

Thanks for the input. I talked to my original GP. She was surprised at my POTS diagnosis because I wasn't passing out, but at least she had seen one patient with POTS before. She thought I should see a specialist and gave me referals to two local docs: a neurologist and an electro-cardiologist. She said POTS is 'esoteric'... that's for sure. I have an appointment with the neurologist in a month. I'll decide how to proceed based on how that goes. Thanks for the info about those two docs Ann. I also found the UCLA web site:

UCLA Center for Autonomic Disorders

Jesse

Linda gets docs to ask her for POTS info

Moses parts the Red Sea

Man walk on the moon

You know, before I went to Mayo and got diagnosed I saw a doc who had no clue what was wrong with me and I never did call back to tell him what it was. I'm going to do that.

Jesse

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

Hello,

Well, as you probably know, syncope is associated with low blood pressure. How's your pulse/ BP?

I suggest getting a home blood pressure monitor. (I presume that the arm cuff ones are more accurate than the wrist ones.) That way when you have an episode you can check to see if your BP is low and tell your docs that.

Based on what you said, I doubt a TTT will show much. The TTT brings out symptoms of POTS and other posture related blood pressure problems. Your problem sounds like it's related to sleep not posture.

Maybe next time you have an episode you could try leaning off the side of the bed to keep your head below your body (over a bucket ) to keep as much blood in your head as you can? I suppose you don't want to fall out of bed if you pass out though.

Jesse

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

My POTS happened overnight with no known illness or family connection. I'm light-skinned, blonde, blue eyes, male.

-Jesse

PS

The other idea was to simply start calling all the nearby general practice docs to see if they would/ could treat me for POTS?

That might get me an apointment sooner than seeing a specialist but in the long run that may not be best?