Merrill

Ann, I've flown a lot with pots and I've experienced the feeling you describe only on small planes. It's not so bad on the bigger jets ... and since I'm usually flying Chicago to either the west or east coast, I'm usually OK on the plane (with a lot of gatorade/water and salt tabs and healthy snacks and compression hose). I have felt worse--that funny kind of pressure in my head--on prop planes that are fairly short distance, like American Eagle to Detroit or Columbus or something. What kind were you on?

You'll get better soon; rest and drink up ...

best to you,

merrill

I'm thinking you should add a ton of salt to that ton of water ... and wear compression hose!

All the best to you,

m

(PS the only med I'm on is beta blocker and ambien for sleep--but I also do those other things, and if I stay off the elevator, they help. )

Oh m'gosh, Emily!!! That's an amazing story ... You had such an immediate and strong reaction... crazy, huh? I'm glad you found an answer, though. There HAD to be some reason; even when we suddenly get hit with the flu, there's still a bit of warning! The elevator to such a height--and the speed of it--surely was your trigger. I'll bet you did well in Europe because the going was slow, and your body had time to adjust to the changes.

I'd been to this conference room before, and the elevator ride was never a pleasant one... but this is the first time that I had such a physical response to it. The view is spectacular from there, but I couldn't even bear to look; I got out of there and went home as fast as I could.

Last weekend (traveling to Reno and Vegas) was extremely fun but extremely tiring, and I hadn't yet caught up on my sleep. Perhaps that did predispose me to having this kind of reaction. The end of the day cannot come soon enough! Weekend--and bed--here I come! (Nevermind the laundry, the groceries, the errands...ugh.)

Thanks for telling your story! I'd never asked you about how your dysautonomia started! And I'm sure it took a lot of your energy points for today.

Take good care, OK?

m

Thanks, you guys! I do feel a bit better, but not as good as I did yesterday before that elevator ride! I still have a headache and periodic stabbing pains deep in the left side of my head/behind my eye. And I feel deeply tired--like I could lie down and sleep for days. Good thing the weekend is almost here! I just took some more ibuprofen.

I didn't think to try ice or heat, Gena -- that's a good suggestion. I imagine ice will feel better, so I'll try it tonight. I've also got a 1/2 hour back/neck/head massage scheduled right after work (sort of a continuation of the PT I had on my neck, only insurance doesn't cover this!) ... that too may help. Or make it worse. Either way, my skin will enjoy a little oil and a gentle touch.

best to all,

m

Jenn, I get really hot in summer too; mostly, I stay indoors! Or I'm out long enough to get into my air conditioned car and head to the nearest air conditioned friend's house/store/office etc! I mostly wear long pants with my compression hose--the lightest weight ones I can find that aren't too tight or thin that the lace band at the top of the thigh doesn't show through. It's a mighty difficult trick, and I sometimes fail.

When it's warm and I want to be sitting outside in the shade in my garden, I just wear shorts and I don't care what I look like ... I try not to care anyway, but it depends on where I'm going and how confident I feel that day. It's getting easier. Not a single person said anything weird to me last summer (like, "what have you got on your legs" or "why are you wearing those" or whatever). My friends empathize and know I must be hot. Who cares what strangers think? I have told salespeople trying to help me that I have to wear these things for medical reasons and the conversation ends there. They look sympathetic; sometimes they tell me their own stories about having surgeries and having to wear similar compression garments.

But I swear, I feel better than I do hot wearing the hose in summer. Sure I'm warmer in hose and long pants (and I can't tell you how much I long for pedicured toes and sandels) ... but I feel and do better and have more energy with hose, so I try not to care very much.

Oh--it also helps to keep the rest of your body cool--so stick to lightweight sleeveless cotton on top and try wearing a cooling neck wrap too; those things are amazing, and you may find it doesn't matter how hot your legs are when you're wearing that!

peace,

merrill

Several doctors have told me not to sleep in compression hose, Gena. I can't remember exactly why; I'm still pretty foggy.

I wear the same kind all day every day, whether I'm just hanging out in the house or going out and doing stuff. I HATE the way my legs feel without them on; I can't tell how they feel when I'm sleeping--but I know the hose are missing when I get up in the night to go to the bathroom. Ugh.

Mary, I'm so sorry for what you and Marissa are going through. My heart aches for you two and your whole family. I'll be thinking good thoughts; I hope they reach you in these difficult days. Peace,

merrill

Two days ago I wrote in a post that I was on a (pots) elevator ... well this is a little freaky, but I think an actual elevator ride today set off something that I can't snap out of! I had to go to a meeting for work and rode a pretty fast moving elevator from one to 40 ... (I normally work on 9, and I take a different elevator bank.) Anyway, I got off, walked to the conference room and took a seat, then started feeling bizarre and a bit dizzy. The dizziness passed fairly quickly, but within 15 minutes I started getting severe stabbing pains on the left side of my head--sort of behind my left eye and deep in my head. It felt like a migraine (I don't know if the headaches I more typically get are migraines or not; I get all kinds of headaches a couple times a week, but nothing like this.) I took 2 ibuprofen and 1/4 of a xanax since it was there in my ibuprofen bottle... but it didn't really help.

I came home early from work b/c I felt like I couldn't see straight, and I took a nap. I still feel like crap tho--and am about to go to bed for the night. I've had 800 more miligrams of ibuprofen, but it's not helping and it usually does. Just felt like venting a little I guess. Never thought an elevator ride could make me sick--I'd been feeling FINE before that. Grrr...

Please think good thoughts for a better tomorrow--you know I'm thinking the same for all of you.

You gotta turn that frown upside down, JLB!

Think positive!

If it's not too late to throw my 2 cents in ... I think you hit the nail on the head when you said the panic hit this morning ... you also said that you have a lot riding on this appointment. To be honest, that would throw ANYONE into a tizzy and set off an upset tummy. Try to breathe, try to relax, try to distract yourself as best you can with other thoughts. Sing a song in your mind, watch tv, read, sit down and slice a vegetable into tiny pieces ... focus on something else!

I also recommend making sure you eat a little something easy, like a banana, some applesauce, an egg. Don't go to your appointment on an empty stomach simply because you're afraid of throwing up. I find I'm more nauseated on an empty stomach than I am when I have a little nutrition in there. You'll get through this! Promise!

Tell us how it goes,

merrill

I love my Mediven Elegance thigh high 30-40 mmHg. When I have a prescription I get them through a medical supply pharmacy like Walgreens Home Health ... otherwise I order this product through AmesWalker.com. Yes, they help! They surely enhance the quality of my life. You might use the search function to read past posts on the topic; there have been many!

Hi, welcome here. You might want to check out some of the links that Nina put together into one handy dandy post ... there's a lot to learn, so take it slow and read what interests you most!

Best,

merrill

http://dinet.ipbhost.com/index.php?showtopic=1954

PS special thanks too to Michelle, who started/runs the forum.

Hi, friends. My husband's brother-in-law's sister-in-law (got that? ) turned me on to this hilarious Web site. I've spent way too much time exploring this site tonight when I should have been off shining my sink. I think the tips will make you laugh ... And the best part is that the flylady is encouraging BabySteps ... which is about all most of us can take!

Have fun,

m

http://www.flylady.com/

I just saw this article and thought I might as well post ...

http://articles.health.msn.com/id/100098756?GT1=6532

Good luck, steph ... let us know how you're doing when you're able!

m

JLB, I'm so glad the carbocaine worked for you ... REALLY glad!

I don't know about the sedative effect... I don't think I've experienced that, and I've had a LOT of carbocaine! Perhaps you were experiencing a lovely sense of relief that something you were not looking forward to was finally over and that you made it and you could finally let yourself relax.

As for the xanax, I got a scrip for it when I had my MRI and I'm sooo glad to have it around. I split my pills into quarters and take one before a flight or when I feel particularly tense or upset. Just every once in a while. Works wonders; I don't even feel it working ... I just know it does because I stop feeling icky! I'm med sensitive, and so it doesn't take much to make a postive change. Go for it. It may help you through this tough time you're having with PVCs etc. I have heard that it is sometimes prescribed for tachycardia etc, so it might be just what you need.

I wish I could answer your question about the pvcs or whatever. I haven't a clue what my heart's doing when it's doing its thing. My holter showed more than 1100 irregular beats during that 24 hour period, and I don't know what kind they were. I was told not to worry about it and so I don't. Life's tough enough, you know?

take care,

m

Dino, all I can say is that you can't put a price on physical health and well being ... it's truly priceless. Dental health is no different. You eat with your mouth and digestion begins there; you chew your food--and you need teeth for that. You kiss, smile, laugh--a healthy smile, freely and un-selfconsciously given, keeps your self esteem high and shows others that you care about yourself and them. I truly hope that you do everything you can to preserve and restore your mouth.

best,

merrill

Hang in there, Stacey -- I'm thinking good thoughts,

merrill

Hi, Nina -- I think I was one of the silent types, thinking good thoughts from afar ... You done good, kiddo ... Nice work! Congrats on the new tooth--I know that's been a long time coming, and it must feel fantastic! Sorry to hear the MRI was so rough--I don't know that I would have continued either, and certainly not with the prospect of having to complete 50% of my grade later in the day. Phew! Anyway, so glad to hear you're up and out of the proverbial hole. I'm stuck on the elevator, I think.

best wishes,

merrill

Hi, Dino -- welcome to the Forum. You'll find lots of useful information here ... To answer your question, I'll direct you to a post I wrote a long time ago, since it's directly related to dry mouth and dental care.

http://dinet.ipbhost.com/index.php?showtopic=363&hl=

Here are a couple other threads you may find useful. (I think they include info on the kind of novacaine you should ask for when you get those cavities filled.)

http://dinet.ipbhost.com/index.php?showtopic=1317&hl=

http://dinet.ipbhost.com/index.php?showtopic=1892&hl=dentist

I'll presume you're just kidding about wanting to have your teeth pulled ... that would be the start of your "misery," not an end to it!

Best,

merrill

Persephone, it's not so much a matter of everyone being different--it's a matter of every drug being manufactured differently! People who take a beta blocker three times a day are taking a medication that is meant to be administered with that frequency; that kind of med is not timed release. Toprol XL IS timed release.

best,

merrill

KathyP, I too am on Toprol XL. To answer someone's question about how come only once a day ... this particular medication is timed release, which means that the same amount of medication is sustained in the body for the entire 24 hours. To be honest, for that reason I cannot imagine why there would be side effects right after taking it, unless one were not consistently taking it at the same time each day. In other words, I could understand feeling the effects of the medication if more than 24 hours had elapsed between doses. It's important to always take the dose at the same time for that reason. (It's not critical though--this med, for us pots people, is typically used for symptom relief--so if you're late or a little early in taking it, nothing bad will happen. You'll just have a little extra medicine in your system for a short while if you take it early or you'll have less in your system if you take it late. Does that make sense?)

I take mine at night, just because it's easy for me to remember to take it when I take my ambien... and I typically go to bed at about the same time. If you wanted to try switching your time to nighttime dosing, I'd recommend taking your full dose in the morning and then splitting the pill (which you can do because the 25 mg toprol xl is scored) and taking an extra 12.5 mg at night. Then don't take a dose the next morning, and go back to 25 mg the next night. Do this on a day where you don't have much going on and don't have anything physically taxing to do--especially if your main side effect right now is tiredness.

(You could also try decreasing the morning dose to 12.5 mg on the day you want to begin to switch to nighttime dose, then 12.5 mg before bed, then 25 mg the following night.)

Hope this helps,

m

PS IT's probably best to call and ask your doctor this question--I'm just suggesting what I would do based on what I know about myself and about why I'm taking this medication. I don't know YOUR symptoms or history or why your doctor put you on this med ... so check with her/him!

Kare, I don't know what trazodone is ...

I always figure that OTC drugs should be taken the way they're intended ... and Benedryl is for allergies (tho people do take it as a sleep aid). The sleepy drug in benedryl is the same as that found in Tylenol PM. I took tylenol pm for a while (1/2 of one pill) but that still left me with a groggy hung-over type feeling in the morning; often took most of the day to shake it, so I stopped. Now I take Ambien, a prescription med for sleep--I take 1/4 to 1/2 of a 10 mg tablet. Works great, no lasting effects in the morning. I recommend talking to your doctor about getting a prescription for a real sleep aid (instead of benedryl).

Has anyone tried the new one that just came out? Sonestra or something?

Susie, are you taking anything in addition to the beta blocker? People with pots are often (but not always--I'm a case in point) prescribed beta blocker AND midodrine (or florinef) together. If you're passing out more on beta blocker alone, you should definitely speak to your doctor! With the right combination of medications and lifestyle changes (including increased salt, fluids, compression hose), you may be able to continue working--and keeping whatever schedule you want and feel comfortable with. Passing out at work--or anywhere--is not a good thing... I hope you can talk with your doctor about how you're doing on your increased dose.

(To answer your question, I believe I've had pots since I was a teenager... I don't pass out; my heart rate is very high. I have always been able to work full time--but I've always had jobs where I sit all day at a desk with minimum outside stimulation/interaction.)

best,

merrill

Hi, Monica. I know you asked this of Julie, but I too suffered major cervical spine stuff this last year ... I posted about an unusual experience I had December 2, I think it was, which led to my diagnosis and treatment of bulging discs, arthritis, and reverse curvature of the cervical spine. (Before this one freaky incident, I suffered neck and shoulder pain and stiffness and numb hands and arms during the night, numbness and tingling during the day.) An MRI revealed what was going on. I asked every health professional I encountered at the time what the connection was between this and pots, and they all said none. I believe that, actually ... The spondylosis/arthritis is wear and tear that comes with aging--some people have major changes but feel nothing; others have less change but more pain as a result. I highly recommend you see your gp and get an MRI of the cervical spine to see what's going on. I had 10 weeks of twice a week physical therapy, and while I'm still having problems, the daytime symptoms are gone and the nighttime ones are much less common. Pain and stiffness is still daily ... but it's not nearly as severe as it was.

Best to you,

m