Bella127

I'm so sorry that your family doesn't understand. That can be one of the most difficult things to deal with when having a chronic illness. Some people will just "not get it" no matter how hard you try to get it through their thick skulls..

Too bad they couldn't have been there for your tilt table test (if you had one)! That's the time to let them really "see" you going downhill, and hear the doctors saying "her heart rate is skyrocketing, her BP is low", etc.

Have they ever gone along with you to a doctor's appointment? Have they ever seen you nearly pass out because of heat? Although, with some people, even when seeing something like this...they might be so stubborn in accepting that something IS medically (not psychologically! ) wrong, that even seeing something like this wouldn't push them over the "edge" into believing.

If possible, could you take them to an appointment, and have your doctor talk about the seriousness of POTS and the symptoms that you deal with on a daily basis, etc.? Just a thought. Maybe listening to an "expert" will change their minds.

I have to say that I agree with taking care of yourself FIRST. The emotional toll of this can easily exacerbate POTS symptoms, as well all know. Please try to believe in yourself, and know (as I know you do) that you DO have something legitimate, and that some people don't have the capacity to understand unless, maybe, they have something similar happen themselves.

It is so difficult when you don't have the support and understanding of those close to you, but know that you have that here. We all understand where you're coming from. ((hugs))

Chrissy

Alicia,

I do notice that some days, I just can't take certain noses. I'm not sure why this is...although I don't think it's very severe. Sometimes I can't have music on around me, and have to have everything quiet, can't watch TV, etc. This used to be related to migraines (where I had to have NO noise, and had to have the room completely dark), but for some reason I really don't get migraines anymore.

I agree with the comment about feeling "overstimulated" - that's the way I would describe it too. It just seems like on some days, (probably the "bad" POTS days) noise puts my symptoms into overdrive. Sometimes even someone talking will do it, and I'll feel like they're talking a lot louder than they actually are. I get really sensitive with a lot of things when my POTS symptoms are bad that day (or minute) in the first place. Silly question, but I wonder if this stuff is ANS related, and if so, how?

Do you find that you are always sensitive to noise, or is it just during certain times (when your POTS symptoms are acting up, or when the noise is extreme)?

Hope you find some relief soon.

Chrissy

Thanks so much for all of the responses. I can see a lot of you are dealing with the same thing as I am, and I definitely feel for you!

I did have sinus surgery in February of '07...I had a deviated septum, and some nasal polyps removed. This did help as far as my infections not lasting as long and the symptoms not being as severe. I still get the 'sinus infections' just as often though, but I can breathe better.

I have to say that irrigating my sinuses with the salt water definitely helps... I have something similar to the Neti Pot (made by the same company) except mine is a bottle that you squeeze upward into the nose to get more flow into it (nice because you can regulate with how much force the water goes into your nose - it's gentle but effective). It seems to help a lot with my general breathing (always a good thing ) through my nose, but I'll always notice the congestion just "coming back" within an hour or less. I do the saline stuff two times a day.

Dr. Grubb had put me on Singulair for one reason or another a couple years back, although now I can't remember why. I'm going to take a look at my medical notes and see-- if I was having less sinus infections while I was on it, that may be something worth looking back into! I also wanted to try and take Benadryl once a day and see if it helps (mostly because of MCAD).

I will let everyone know how the appointment with the allergist goes - I'm definitely bringing up the possibility of MCAD. Something has always told me deep down that "something else" is going on besides my POTS - maybe this is it.

Who knows. In the meantime, I hope everyone is feeling well and that you guys are finding relief for these sinus issues!

Jennifer - interesting, because I never thought that vasomotor rhinitis ITSELF could be CAUSING the sinus infections!! I'm guessing this is because if the vasomotor rhinitis symptoms aren't treated, they cause more congestion, etc.?

Julie - My ENT has this neat little camera that he puts up my nose when I visit. He always asks if I want to see the screen and watch, which of course the answer is "you bet!" - I'm way too intrigued by the inside of my nose - but last time I had an "infection" (what my primary doc said was an infection, and which she gave me antibiotics for), he looked in there with the camera and said my nose was CLEAR! and I mean, you could tell I was sick... my eyes have that glassy look to them, I was weak/tired, coughing, etc. ahhh... but he did say the turbinates were a bit swollen. whereas I felt that my nose was not clear at all (although it FEELS stuffed up, it actually isn't) - is the feeling of being congested, without actually BEING congested/full of stuff in the nose part of vasomotor rhinitis?

Cath_UK - Interesting that after your TMJ/dental issues cleared up, that your sinuses got better! Wow! I wonder what the link is exactly? Did your doc ever say why? I got TMJ last year, around September or so, and had a mouth guard/bite piece that I used also. It helped tremendously, along with advil for the jaw pain, and if it got REALLY bad, some valium (don't worry- not both). It has improved SO much since. the TMJ was so bad that I used to cry myself to sleep some nights from the pain- now if I feel it "flare up" I just wear the mouth piece. I try to wear it most nights but it's hard to have this cumbersome mouth piece taking up your whole mouth & then not being able to breathe through your nose!

Lisa - thanks for the reply! Do you think the singulair helps you with your sinus issues (if that is the reason for being on singulair)? do you have vasomotor rhinitis, or chronic sinusitis?

Radha - do you have allergies, or has the possibility of vasomotor rhinitis been looked into for you? V.R. stems from ANS issues, and can cause symptoms of allergies without actual allergies.

Chrissy

Julie,

Omigosh! What a scary past couple months of waiting for results!! I am soo glad to hear that you AND your son do not have vascular EDS! Yay for good news!!

Chrissy

This is the copy and paste of the reply to firewatcher in the "Echinacea" post, but I wanted to make another topic for it since I wanted it to focus on the sinus issues also! If anyone has any insight, please let me know:

I was recently diagnosed with vasomotor rhinitis by my ENT. I'm definitely sensitive to smells, smoke, irritants etc., and it seems I always have a sinus infection. Or the symptoms of one - although I DO have greenish/yellow (infected) mucus almost every time (sorry for being so descriptive...love these symptoms) making me believe it IS an infection? Anyone have thoughts on that?

Plus, every time I go to my primary, she tells me it's an infection, and hands out the antibiotics. I know they're not good for me to be on all the time, and it's hard for me to believe I'm actually getting real sinus infections without there something being wrong with my immune system (the allergist did the blood test to be sure, although the blood test from a year and a half ago showed my immune system was fine). Every 4-6 weeks I keep getting these "infections", and am back at the primary or my ENT. So basically by the time I get over one, another one is started! I looked into fungal sinusitis as a cause, because of the overuse of antibiotics (antibiotics create an environment for the fungus to grow, creating another infection, which you think you need antibiotics for, etc... creates a vicious cycle), but the doc said he would have found that out when he did sinus surgery on me last year.

When I went to my ENT during what I thought was a sinus infection this last time, he did say he thought it was something upper respiratory, because I was coughing really bad (they did an x-ray to check for pneumonia), lots of mucus, congestion, etc. He had diagnosed me with vasomotor rhinitis a couple months ago, but aside from that I think I get a mix of the vasomotor symptoms AND infections.

What does anyone take for vasomotor rhinitis? My ENT prescribed Astelin, and I do a saline nasal rinse every day. I can breathe a little better with both, but am still having all of the symptoms; I feel congested, my eyes burn, I feel weak as if I'm about the get the flu, etc. I've been like this ever since getting POTS.

And I did try to tell this allergist that I went to recently that if I don't have an episode within the 24 hours, then I most likely won't test positive for anything to do with MCAD...but of course he said he has "never heard of MCAD", and that I need to "stop going on the internet and reading what all the crazies post about their mast cell disorders and trying to fit my symptoms into what they're saying (those on the mast cell forums)" mad.gif

What a jerk! So I'm sure I didn't have an "episode" during this urine test, which is why I am not looking forward to going back to him for the results -- I don't want to hear "I told you so" and have to sit there while he makes me feel like an idiot for coming in (which is basically what he was trying to get at last time - "You have none of these symptoms. So what, you get dizzy once in a while?" Grrrr!).

Thanks for bringing up the vasomotor rhinitis - I'm thinking it must be a bigger picture in all of this "sinus infection" nonsense than I thought. So you get sinus infections intermittently with the vasomotor? If you get sinus infections often, what does your doc say about it (or is it attributed to the allergic rhinitis)? And as far as Vitamin D deficiency, is that something that's taken care of with a vitamin? I do take a multivitamin every day.

We threw that Echinacea AWAY - no more of that! How horrible. I had vertigo (felt like I got a new prescription for my glasses - depth perception was off, etc.), bad headache, sweating, made the heat yesterday even worse. Overall my symptoms just got really bad. I didn't even THINK to check how it would react with POTS and my other medications! (I'll blame it on my brain fog wink.gif ) A friend of mine takes it before she feels that she's getting sick, and she NEVER gets sick. I've been so frustrated with these sinus issues that I'm desperate to fix it any way I can.

I'm kind of at the end of my rope with this sinus stuff...it's really getting in the way of me being able to do much of anything. I'm finishing my last year of my BA online now, but it just makes me feel so uncertain about the future - how will I be able to work full time (or at ALL) if I can't manage these symptoms? I also want to work with children, which is another concern, because if I'm always getting sick with something, I'm also always CATCHING whatever anyone else has (and we all know kids are little petri dishes swimming with viruses, etc.). I worked at a preschool briefly last year (4 weeks) and had to quit because I got sick twice from the kids who had colds, was out for a couple weeks, came back and it happened again. I just couldn't do it. Meanwhile everyone else at my work didn't get anything- which makes me think it's my immune stuff, but my immune system is supposedly ok (as of last year, but should know the updated results in a couple weeks).

I always feel as though I'm getting the flu, my body gets weak, I'm congested, tired, my eyes burn, etc. I just don't remember feeling "normal"...I'm always run down, etc. It's so tiring, and I feel my POTS would be (ALMOST) manageable if I didn't have this sinus stuff knocking me down/exacerbating my symptoms! Any advice???

firewatcher,

I actually was recently diagnosed with vasomotor rhinitis by my ENT! I'm definitely sensitive to smells, smoke, irritants etc., and it seems I always have a sinus infection. Or the symptoms of one - although I DO have greenish/yellow (infected) mucus almost every time -sorry for being so descriptive...love these symptoms!- making me believe it IS an infection? anyone have thoughts on that?

Plus, every time I go to my primary, she tells me it's an infection, and hands out the antibiotics. I know they're not good for me to be on all the time, and it's hard for me to believe I'm actually getting real sinus infections without there something being wrong with my immune system (the allergist did the blood test to be sure, although the blood test from a year and a half ago showed my immune system was fine). Every 4-6 weeks I keep getting these "infections", and am back at the primary or my ENT. So basically by the time I get over one, another one is started! I looked into fungal sinusitis as a cause, because of the overuse of antibiotics (antibiotics create an environment fo the fungus to grow, creating another infection, which you think you need antibiotics for, etc... creates a vicious cycle), but the doc said he would have found that out when he did sinus surgery on me last year.

When I went to my ENT during what I thought was a sinus infection this last time, he did say he thought it was something upper respiratory, because I was coughing really bad (they did an x-ray to check for pneumonia), lots of mucus, congestion, etc. He had diagnosed me with vasomotor rhinitis a couple months ago, but aside from that I think I get a mix of the vasomotor symptoms AND infections.

What do you take for it? My ENT prescribed Astelin, and I do a saline nasal rinse every day. I can breathe a little better with both, but am still having all of the symptoms; I feel congested, my eyes burn, I feel weak as if I'm about the get the flu, etc. I've been like this ever since getting POTS.

And I did try to tell this allergist that I went to recently that if I don't have an episode within the 24 hours, then I most likely won't test positive for anything to do with MCAD...but of course he said he has "never heard of MCAD", and that I need to "stop going on the internet and reading what all the crazies post about their mast cell disorders and trying to fit my symptoms into what they're saying (those on the mast cell forums)"

What a jerk! So I'm sure I didn't have an "episode" during this urine test, which is why I am not looking forward to going back to him for the results -- I don't want to hear "I told you so" and have to sit there while he makes me feel like an idiot for coming in (which is basically what he was trying to get at last time - "You have none of these symptoms. So what, you get dizzy once in a while?" Grrrr!).

Thanks for bringing up the vasomotor rhinitis - I'm thinking it must be a bigger picture in all of this "sinus infection" nonsense than I thought. So you get sinus infections intermittently with the vasomotor? If you get sinus infections often, what does your doc say about it (or is it attributed to the allergic rhinitis)? And as far as Vitamin D deficiency, is that something that's taken care of with a vitamin? I do take a multivitamin every day.

We threw that Echinacea AWAY - no more of that! How horrible. I had vertigo (felt like I got a new prescription for my glasses - depth perception was off, etc.), bad headache, sweating, made the heat yesterday even worse. Overall my symptoms just got really bad. I didn't even THINK to check how it would react with POTS and my other medications! (I'll blame it on my brain fog ) A friend of mine takes it before she feels that she's getting sick, and she NEVER gets sick. I've been so frustrated with these sinus issues that I'm desperate to fix it any way I can.

I'm kind of at the end of my rope with this sinus stuff...it's really getting in the way of me being able to do much of anything. I'm finishing my last year of my BA online now, but it just makes me feel so uncertain about the future - how will I be able to work full time (or at ALL) if I can't manage these symptoms? I also want to work with children, which is another concern, because if I'm always getting sick with something, I'm also always CATCHING whatever anyone else has (and we all know kids are little petri dishes swimming with viruses, etc.). I worked at a preschool briefly last year (4 weeks) and had to quit because I got sick twice from the kids who had colds, was out for a couple weeks, came back and it happened again. I just couldn't do it. Meanwhile everyone else at my work didn't get anything- which makes me think it's my immune stuff, but my immune system is supposedly ok (as of last year, but should know the updated results in a couple weeks).

I always feel as though I'm getting a flu, so I just don't remember feeling "normal"...always run down, etc. It's so tiring, and I feel my POTS would be (ALMOST) manageable if I didn't have this sinus stuff knocking me down/exacerbating my symptoms!

Thank for the replies! We'll let all of you know how the appointment goes with the other doc...I have a good feeling about him. Hopefully he doesn't dismiss any of these sinus/MCAD issues!

Chrissy

I'm SO sorry your son had to go through that! I hope he is doing better now (and you, too, willows - from your fall!). How ignorant of that nurse, and the rest of the staff, to carry on as if your son is "just fine"!! Grrr... it's hard not to speak up at times like this, but I'm sure you didn't want to say anything at the moment at the risk that he would take it out on Mike with more poking/prodding/bad blood taking skills!! That's always what my mom worries about - speaking up at the moment and then having them take it out on me.

I can completely understand what Mike is going through as far as no one believing him that he doesn't do well when having blood taken! I can't count how many times I have told the person taking my blood, "I have a heart condition and get very faint/lightheaded and sick when having blood taken", and yet their response is something like, "Oh, that's just nerves. Everyone gets like that." !!! No, they don't! I don't know what it takes for people to truly "get it". It's obvious that your son was feeling completely horrible, and the fact that that male nurse had a smug grin on his face is just appalling!

I feel for you. It is good news though that you will be going on a cruise for Christmas!! That will be so much fun, and will definitely make for a nice "break" from the medical environment for a while. I'm sure that lifted everyone's spirits.

Thinking about you and hoping you don't have to deal with a situation like this again! (Although, sadly, we have to be prepared with every new doctor, nurse, etc. because you just never know)

Hugs!

Chrissy

P.S. I had my blood taken last week, and when I told the nurse that I get very lightheaded, etc., she used a pediatric needle instead of the adult-sized one. Do you think this would help Mike at all? Just a thought -- it was definitely easier this time around for me with a smaller needle.

Chris,

I sent you a PM.

Chrissy

Isn't it horrible when people judge like that?? I can definitely relate to your story, and I'm sure this kind of thing happens to all of us POTSies at one time or another.

A few years ago, I had parked in handicap parking when I was going into a store with a friend. It was a rainy day, and my symptoms get so much worse when the weather is like that. When I came back to my car, I found a nasty note from the old woman who had been glaring me down (she was parked across from me before I went into the store). It said something like, "You stole this from a handicapped person! How dare you!" etc., etc. How I WISH that she was still sitting in her car when I found that note!!

I probably have too big of a mouth to just walk away if someone were to say something like that to me, but then again we know how symptoms flare when we get worked up/emotional about things. But I think it is definitely worth saying something, because otherwise these people walk away thinking they did some tremendous "service" to society by ridiculing someone who "doesn't need a handicap tag". Something like, "that's funny, I bet you didn't think that there are things wrong with some people that you can't SEE? I have a heart condition where I am so tired I feel as though I'm running in place all the time, and at this moment, my heart is working three times harder than yours to stand."

I mean, how ridiculous-- can you "see" diabetes, heart defects, cancer, etc.? It's hard to believe that people can still act this way, but sadly, we are all too used to it.

I hope your symptoms are doing okay and didn't flare up too much after this experience. It does help to have something to say ready for when (or if) this happens again. Although, who knows if we would remember anyway... (darn brain fog)

I like flops' comeback - "I can limp if you like, but it doesn't make my heart problem any better." - PERFECT!!

My friends always say if I had crutches, etc., no one would ever say a word - so true.

Chrissy

I'm so sorry to hear you're going through this horrible heat with no A/C!! What about buying a window A/C unit for the room you're in the most? I have central air in my house, and even with THAT on, I STILL had to get a separate window unit for my room since the house can't be kept to freezing temps for everyone else.

So I would definitely look into that, because to me that's the most permanent thing that's going to help you the most as far as heat- having to apply/reapply cold washcloths to the back of your neck can help, but that will also get very tiring.

Also, have you looked into buying a cooling vest? I haven't used one, but I've heard they can be great for climates with bad heat. I googled "cooling vest" and came up with a bunch of results, but if you go here, you can get an idea: http://store.coolvest.com/merchant2/

I'm not sure what the best kind is, etc., so if anyone else has ever used one and knows of a good brand, etc., they can probably give you some recommendations.

Like you said, it is hard keeping hydrated too because you spend time running to the bathroom...but it will help. Keep your salt content high because this will help you to retain water.

Let me know about the A/C info, and if there's anything else you wanted to ask! I know it can be very hard to go through things like this especially when we are so young and don't know what to do (I am 22). Have you thought about at least getting some type of stand-up fan? I'm sure that doesn't help a LOT seeing as the heat in Cali is extreme, but still. It also helps to try to take cooler showers when you're symptomatic.

Hang in there, and I hope your symptoms get better!

Chrissy

Have you thought of the possibility that you might have TMJ? It's pain of the temporomandibular joint, which is the joint connecting the upper and lower jaw.

"Temporomandibular Pain Dysfunction Syndrome or TMJ symptoms are quite common. They include local joint pain, ear ache, headache, noises and pain when you chew, and various associated muscle pains. The ability to open the mouth wide may be limited. Ordinary chewing of food may be difficult."

I had this for MONTHS last year, and it caused VERY extreme pain - my teeth would hurt in the back, I had throbbing on the sides of my jaw (started on one side then happened to both sides) and had very bad pain in my ear also, and the side of my face. It was so bad at times that I would cry at night because nothing helped. I also couldn't talk much either, and eating anything that required opening my mouth even a bit wide, or chewing a lot, was out of the question.

The thing that FINALLY gave me some relief was a mouth guard/mouth piece. It basically gives your jaw something to clench on, and gives it some "space" between the joint (so you are not pushing on the inflammation/nerves that are aggravated) if that makes sense. There's usually a lot of inflammation in the joint, which hits the nerves and causes the pain. Aside from using the mouthpiece, I was prescribed a muscle relaxer (Valium) which did help. Other than that, before I had the mouthpiece and the Valium, Aleve helped more than anything. But the big thing was the mouthpiece. I would sleep with it in, and it was almost immediate relief. I know they sell these cheap at drugstores, but I don't know if that will give you the same relief because those types are usually pretty thin and won't give you much material in between your upper and lower jaw. Hope I explained that okay. Although it is worth a try, so if you can find one that is thicker, like the kind used for sports, etc. maybe that will help you.

Does chewing hurt? (Chewing gum = the worst thing you can do) Has the dentist suggested the possibility of TMJ at all? If not, I would definitely make an appointment with someone else, seeing as he really doesn't seem to know what's going on, and you need some relief!

Look up some things on TMJ and see if that fits with what is going on. It seems to, given the jaw pain, ear pain, and the pain now radiating up to the side of your face - same thing that happened to me.

Let me know what you think and what you find out!

Hope you get some help soon.

Chrissy

I read the part about chest pain, and it reminded me of a visit to the doctor I had a few years back. I got the same thing, although the chest pains were kind of sporadic. Are yours this way too? What kind of pain is it? (Stabbing, sharp, dull, etc.)?

I don't know how true this is, but the doctor there said that if you can recreate the pain (push on the area on your chest that hurts; and when you touch it, it hurts) then it is NOT a heart-related chest pain. Makes sense. I do that when I get them even now, just to reassure myself that my heart isn't going bonkers. Although from what I've heard from others, I do think chest pain is a common symptom of POTS. Maybe this is because our heart is kind of overworked and trying to pump blood to all of these areas, bring up BP, etc.? I know many people have chest pain as a part of POTS, although I'm just not sure exactly how that symptom is caused. Anyone have any input?

One thing that doctor DID tell me that could easily cause pains in the chest was dehydration. I have been drinking a LOT of water lately and have noticed that my chest pains are better. My neuro also told me that if you ever FEEL thirsty, that means you are already dehydrated, because your body is sending you "warning signals" (the feeling of thirst) that you need to drink. I don't see myself as "dehydrated", because when I think of that, I think of someone crawling along a desert, gasping for air, who hasn't had a drink in days or something - but in reality most people ARE dehydrated because we just don't realize we don't get enough. I'm still trying to drink as much as possible, although sometimes I feel like a walking water balloon.

Do you think being dehydrated could be a factor for you? Have you ever asked about this, or had a doctor bring it up regarding the chest pains? Anyone know exactly why we get chest pains with POTS?

Hope you find some answers soon!

Chrissy

That is definitely a large dose, especially for just trying a new medication. I would recommend starting on as low a dose as possible; that way you can work up to what is tolerable and what works best for you. This is usually the best approach with us POTSies - everyone reacts differently to different medications, as I'm sure you know!

I have been on Mestinon for a few months, but was also told to work UP to 60mg/day. At first, I was prescribed the whole 60 mg once a day, but that gave me GI symptoms. I was able to cut my pills in half, so I now take one half (30 mg) in the morning, and am working up to adding in the other 30 mg at dinner time or so. I did try a whole pill not long ago (all 60 mg at once) and it still did not agree with me as well as splitting up the pills.

Mestinon seems to have helped most with my showers, heat intolerance, and tachycardia. It feels as though my chest palpitations are not as forceful and not as fast. Especially when I get out of the shower, I have noticed a difference in that I have a bit more energy to get through them. I'm not nearly as symptomatic, and don't have to rest as much now before drying my hair. As far as side effects, I don't know about anything asthma related. Seeing as you do have ashthma problems, though, I would be especially careful about starting off on a high dose. Some people have GI side effects, like I did. When I took the 60 mg pill at once, it sped up the digestion process and let's just say I had some icky stomach symptoms, stomach gurgling, etc.

I think eventually though, since I have done this over a period of a couple months, that I could tolerate the whole pill soon. If you work your way up in small increments by increasing the dosage every so often as it works for you, that may be the case with your higher dosage as well. Is there a doctor that you see for your asthma problem, who is familiar with your issues, and who you could ask about Mestinon as it relates to your asthma? That might be a good route to take.

Hope this helps...let me know what you end up doing!

Chrissy

I have not heard of it...I have heard talk about the harmful effects of cell phones on the brain, etc., but did not know if there was research actually backing it up.

How did you come across this? How does it actually work?

Since it does help the nervous system, is there any evidence of it helping people with any nervous system disorders?

Interesting...would be nice to know more! I think I'll look a few things up about it myself too.

Chrissy

Hi,

Zofran is the only medicine that has helped me with extreme nausea. I don't take it all the time; only when it gets so bad that I can't do anything, even sleep. But it works wonders for me, and thankfully I don't get any side effects from it.

Also, for whatever reason, plain rice seems to settle down my nausea also - really, any carbs help me. But I know some people with POTS are very sensitive to carbs, so you do have to be careful.

The other thing I can think of is a little off the wall, but has also helped (comes in second place between all three of these) - pickles! I know what you're thinking: "ugh, pickles... just what I want to eat when I'm nauseous!" but if you try, maybe it will help you too. Usually it is the most immediate result for me, second to Zofran. If I get really nauseous, I will have maybe 2 or 3 baby pickles, and that's it! It usually calms down within a few minutes, and if I can have some pickles rather than a pill, why not?

I read somewhere that lying on your left side can also help with this, because it's related somehow to how the stomach/esophagus is positioned and calms down acid reflux. This seems to be comfortable for me when I'm nauseous also.

Hope this helps!

Chrissy

Hi Everyone! I hope you're all feeling well today!

So, here's the story: Kohl's is having a contest through Facebook, where you can win $10,000 for submitting your "favorite jeans story" - so I wrote a small essay referencing my health problems (limit was 1,000 characters) and submitted a photo of me during a photo shoot last year. For those of you without Facebook, here's the essay:

"Looking at my picture, you would probably guess that I'm completely healthy. Little do most people know, I was home-tutored through parts of high school because of a rare heart condition. I've worn these jeans for years, so they've been with me through all of it. I've dealt with criticism because I "look fine", had people tell me I couldn't accomplish things, and I've proven them wrong. I went to college in high school while completing my diploma, got an associates degree, and am now finishing my undergrad. I didn't let my health become an excuse, but sometimes had doubts about what I'd be able to do. One day, I went along to a modeling convention and decided to fill out a form. Before I knew it, I was chosen to participate in a runway show, and to have my own professional photo shoot. Of course, I wore my favorite jeans that I've had through everything! I keep this picture framed on my desk to remind me of that day. Lesson learned: never give up, and don't judge a book by its cover!"

You can only vote for me to win if you have Facebook. If any of you do, you can either add me as a friend (Chrissy Lorenzo) or you can go to the Kohl's website and try to find my entry by clicking on the blue banner on the right hand side that says "Your Chance to Win", then this will prompt you to sign into Facebook...(there are about 195 entries as of now) and mine is entitled "Don't Judge A Book By Its Cover" by Chrissy.

In order to vote for me, you need to:

1) be logged into facebook, and add the kohl's video contest application (either by going to the following link or finding me on the Kohl's website)

2) go to:

http://apps.facebook.com/kohlscontest/user...entries%2F56990

or:

(add me as a friend- please put a little note that you're from Dinet) then go to my page and click on "View and Vote" in my mini-feed

3) click on my photo, then click "Love It" to vote!

You can vote one time EVERY day until August 29th - so please check back as often as possible to add in your vote!! thank you so much everyone!! I'm very nervous but excited because I feel - as my mom said - that I'm finally "out of the closet" (I sent this message to ask for voters to some 300 'friends' on Facebook from school, etc. who probably had/have no idea I have a heart condition- and some who know but are those who probably think I'm "making it up") So even if I don't win, this was definitely worth it.

Anyway, if you have Facebook, remember to either go to the Kohl's website & log in and search for me, or add me as a friend. Please vote as often as possible - as much as once every day until August

Just think, if I DO win, what this could do for "invisible illnesses" - that's exactly why I wrote what I wrote. Of course, I could have written 10 pages...so good thing there's a limit! Cross your fingers!!!!!

3 years - wow! That's great that you FINALLY got approved!

I was denied the first time through. They said "although you do have POTS, along with other conditions, we believe that your health is still not impaired enough to work a full-time secretarial/sit down job" - something like that. Just reading that was upsetting, because they obviously don't understand what it takes to get to the point of showering, eating and getting dressed in the first place, much less drive to work and work a full shift doing ANYTHING (including SITTING because of the blood pooling - HELLOOOO people!!!).

This time we decided to try again using an attorney. At least they are more used to the process, and maybe that will help things move along quicker. When we went to the attorney, he said that Ohio is something like 14,000 cases backlogged and that they were starting to send cases out to other states in an attempt to relieve some of it and get up to date on their cases. So you can imagine how many people are probably waiting!

What do you think it was that finally got yours approved? How many times did you have to re-apply for Social Security before the hearing was set? I know we went into more detail about my routine and that type of thing than we did the first time.

Anyway, so glad yours went through for you!! It must be a HUGE weight off your shoulders!! YAY!!

Chrissy

Melissa - I'm SO happy to hear the surgery for the port placement went well!!! My mom and I have been thinking about you every day. I miss talking with you so much - but believe me, I understand that it's difficult to find the energy, strength, (and times without brain fog! ) etc. to correspond. I am just so happy to read an update, because you have been in my thoughts.

I'm hoping to be able to visit you even before my appt. with Dr. Grubb this summer. If you do feel well enough, I'd love an email from you - I will write you soon too. I know that you must get so many messages, and that it takes a lot to even type back at times, so please do not worry about writing back. (As long as you realize I will probably keep sending messages, and talking and talking.. you know me! ) Of course, if you are feeling up to it, I'd ALWAYS love to hear from you!

We miss you and love you, Melissa!!

Chrissy (and Mom!)

Hi Guys,

I'm using Chrissy's computer, but this is Patti.......

We saw Dr. Shields today (Neurologist at CCF). His explanation is that it basically helps fluid retention. It's distributed evenly throughout the body by keeping it out of the bladder. Chrissy does not have acid reflux. The nausea is POTS related-- she has delayed gastric emptying, which causes food to sit in the digestive track too long, which is what seems to have been causing her nausea.

Either way, we don't really care as long as it helps!!!

Patti

Melissa!! Our little sunfish!!

soooo glad to hear that the decision was made in your favor. and even HAPPIER to know that you are doing much better than you were a whole month ago!! yay!!

I hope you keep feeling better - I've been thinking of you every day.

miss you!! keep us posted on everything.

((*mega-big-hugs*))

Chrissy

mary,

I understand your frustration..

I was 15 when diagnosed with POTS, and I have a twin brother who has never developed any problems/symptoms related to POTS--although he has sleep problems with insomnia lately. So it's funny sometimes who POTS will "target", and I'm not sure there is any certain "type" -- although the fact that my brother doesn't have one inkling of POTS makes me feel that the genetic predisposition is more prevalent in females, which we already have seen a pattern of to some degree (strange, because I also have the "POTS look" - pale skin, thinner build, tall, blonde hair/blue eyes, and my brother is the opposite - tall and thin, but dark hair/eyes/complexion). Since my POTS came about after an onset of bronchitis, who knows, if my twin got some kind of viral illness, if it would "trigger" POTS with him? There's no way of knowing, and I hope that he never has to find out!! I feel that overall my system is more sensitive than his-- he has been sick before, and it never affected him how it did for me.

Also, sometimes POTS doesn't take the "classic" route in how it shows up in people. A couple years after I was diagnosed, my younger brother, who was probably 14 at that time, was having gastric problems; horrible stomach pains where he would be unable to function/go to school. Long story short, he was also diagnosed with POTS, even though he had no history of low BP/unstable HR; the dr. attributed his stomach problems to POTS ("stomach migraines" due to POTS--but who knows if this was just the dr. saying "I'm comfortable w/POTS and know enough about it, and your sister has it and is on florinef, so let's go with that, and put him on meds for POTS"- who knows.) Although, I can understand the diagnosis from a gastric standpoint-- in that many of us POTSies have delayed gastric emptying, issues with nausea, bowel problems, etc.

My brother was put on elavil, and soon after, his stomach problems seemed to fade, and eventually he weened himself off the elavil & his stomach has never bothered him since. (Like I said, though, we can never really know if the stomach problems went away on their own throughout adolescence, or if it WAS a POTS-related thing that the elavil eventually helped.)

I can tell you though, that as much as I understand that you don't want to drag your son down the "POTS road" with testing, etc. (& you don't want to open your mind up to other possible symptoms he could have if he has this symptom of high BP now- "I hope that doesn't mean that he will have purple feet, shower issues, and develop a love of salt" ), -- if it does end up being something POTS-related, the sooner he "catches" it, the better. And, he is luckier than most because he has a mom who is familiar with symptoms/treatments, and who will will understand better than anyone else. Let me tell you, (and I'm sure you can relate) it means the world once you have someone who "gets" what you're going through -- not to mention that you don't feel "crazy" anymore, like it's all in your head.

For me, although neither of my parents have POTS, I felt that they were behind me from day one, and they still are. Sometimes it's almost as if they know my body better than I do--even one of my brothers at times will have to "remind" me -- "careful, maybe you shouldn't bend over and pick that up-- I'll do it.", "whoa- careful, you're getting up too fast" or "its really hot today, make sure you keep drinking. or maybe you should just stay in the A/C." and that kind of thing. I can be so stubborn, and even though I am careful to avoid triggers, some days I go around like I don't have POTS simply because I think I can ("think" is the key word... ). That's when it's great to have people around you to kind of remind you, "even though you look fine, you have something actually wrong in your body. you need to watch out for yourself. when you're being too stubborn, we'll watch out for you."

In these respects, I think it would be a good thing to have him evaluated for POTS. Not to mention that sometimes, POTS is so "off the wall" with symptoms that it's almost impossible to say "these symptoms mean its POTS, these symptoms don't." (aside from the general "definition" of what POTS is). Take someone like me, who is heat intolerant...I get very sick in high degrees of heat and cannot function; whereas some with POTS can tolerate heat just fine, but are cold intolerant. Medications that are godsends and let us have highly functional lives may just as well be a placebo and not affect another person at all.

And who would have thought that my younger brother's stomach symptoms (no history of low bp, now low bp/passing out/wacky HR at the time, no heat intolerance, etc.) could be attributed to POTS --we had completely different symptoms.

So, you never really know--and trust me, I'm glad if anything that my parents kept pushing when we all knew something was wrong, and these doctors weren't listening --oh well, on to the next doctor who would listen!

It is obvious that you love your son very much, and are trying to get to the root of his health problems. Just thought my experience with the road to diagnosing, and the way POTS can swoop in, kind of "disguised" (as it did with my younger brother) might help to hear. I hope you find a cause to his high BP soon--I know it is frustrating, but nothing is worth more than that moment when you get an ANSWER. Because I know he has a loving mom, I have no doubts that he will find his answer soon!!!

Keep us updated!! Hope this helped.

________________________________________________________________________________

________________________

morgan,

I will be thinking about your son, and about you and your family. Nothing health-related is easy to go through, and the most important thing is that he has all of this support around him!!! The only thing I can say from experience is, as I said in this mile-long post to mary ..you just never know until you try. I definitely understand your not wanting to open up the POTS "can of worms" so to speak, on him as far as testing, etc., --however, if that ends up being the answer, you will be glad you did it.

Was the road to getting diagnosed easy for me? Of course not. Was it longer than I would have hoped? Sure, and for most people that's the case. But do I ever wish I didn't go through it? No way, absolutely not, no chance. I know it is trying/exhausting, but like I said, there is no better feeling than having that answer in front of you and feeling validated. So, the only thing you can do is just exhaust every possible avenue you can think of-- and, trust me, I went down some kooky "avenunes". (thought of acupuncture and hypnosis, did biofeedback, went to neuros, infectious disease doctors, endocrinologists, got told I was crazy by psychologists who probably needed counseling way more than I did ..you name it, until finding dr. grubb )

so all I can say to both of you that at least if you do testing for POTS, you can have the peace of mind in knowing either that yes, it is POTS, or no, it isn't. and this way at least you've eliminated one possible "suspect".

good luck to both of you! I'll be thinking of you. keep us updated!!

Chrissy

Hi,

I have a hard time getting up in the mornings. This is along the same lines as what flop and rachel said, but I'll leave my 2 cents anyway!

At first, I tried playing a CD of nature songs - what helped me was a "soothing rain" song. There was no music to it at all, just the sound of rain - no thunder, loud noises, etc. And I set it so that it would start playing softly when the alarm went off, and after 15 seconds, gradually increase until it was to the full volume that I set it to. That was a nice way to wake up because it was gradual, so at first you're in the "dreamy" stage, and wondering if its raining outside, but then as it gradually gets louder, you wake up.

It was nice for me, because as you said, waking up to a sudden "beep beep beep" isn't a great way to wake up in the morning. We have a hard enough time getting up as it is!

Another thing I thought of that helped - do you have a computer in your bedroom? There is software for music alarms (although, I'm sure there is an easier way to do this that I just don't know about) and for a while I was making my own "wakeup" playlist on my iTunes, setting it to the alarm, and also doing the "gradual start". But this way you can pick something, like a favorite song/playlist, or something soothing to wake you up. Again, similar to the CD thing, except with your own playlist, so it's more personal.

There are also alarm clocks for iPods, (kind of like an iPod dock/alarm clock on your nightstand) but I know they can be a little expensive -- although I think I've seen them at Target for around $50. Not sure how well they work, but same idea - set your iPod to whatever playlist you want to be woken up to, and the dock also charges your iPod at the same time.

I was thinking of looking into that because I've stopped using the computer to wake me up - I was using a trial run of the alarm clock software (too cheap to buy it! ) and the trial ran out.

Overall, having my own "playlist" really helped, as did waking up the the "soothing rain".

Hope these suggestions help! Let us know!

Chrissy

Don't even get me started on mornings...

Yes, I have a horrible time trying to get up!!! You aren't lazy -- 9am sounds great to me! But I understand -- my friends realize that I'm "not a morning person" but sometimes I do feel like other people see it as laziness -- HARDLY!

I have a hard time getting up at 11am and noon some days. I just feel "dead" like my muscles aren't ready to get going -- and neither is my head. I also feel most nauseous/sick to my stomach right when I wake up -- which half the time just makes me fall asleep longer because I don't want to wake up and feel it. My eyes also burn bad in the mornings, which makes putting in contacts impossible on some days.

It does help -- and I'm sure a lot of you do this -- if I take my meds while sitting up in bed when I wake up. I usually take it with gatorade and try to drink a whole one before I get out of bed. I also have a breakfast bar with it so I'm not taking medicine on an empty stomach. Then -- isn't it fun being POTSy? -- I have to "dangle" my legs off the bed (my bed is pretty high up) and get circulation going until I can actually get out of bed/stand up. Sometimes they're numb, and I have to smack them around to get the purple-ish color out and get some feeling back in them --

There have been times where I jump out of bed and forget I have POTS, but that usually ends with my butt on the floor.

My mornings being a pain in my butt -- that's the main thing I would LOVE to get rid of right now! Especially since I'm trying to finish my Bachelor's...a lot of classes are morning classes, and I would love to be able to go to them instead of having to go mid-afternoon/night. Not to mention that I feel like the whole day has gone by/is wasted by the time I feel good enough to actually get anything done.

I went to a sleep doctor (I'm so technical) & he was so confused by this whole thing -- nausea, eyes burning, general "blah-ness" -- and he just told me to get a normal sleep schedule going. That's it. Thanks, doc.

In general, it doesn't matter if I would go to bed at 6pm the day before - 7am would be out of the question, because all of those symptoms are present no matter what. Although, I have noticed -- this is weird -- that if I happen to fall asleep, and then wake up in the middle of the night (say 4am) and stay up through 8am or so, I don't have those symptoms as bad. Whereas if I went to bed and didn't wake up all night, then tried to wake up at 8am, I would feel sick. Its like I'm more "with it" if I'm awake while it's becoming morning. How convenient.

Chrissy

Hi,

My mom just posted...but I thought I would add my 2 cents. I've been on 100 mg (1 pill) of Provigil/day for about a month or so. I take it as soon as I wake up in the morning. After seeing Dr. Grubb in Toledo on Tuesday, he suggested I add another 1/2 of the pill in the morning to "jump start" me and give me a little boost.

So yesterday was the first day with my extra 1/2 pill (so now on 150 mg), and I have to say I could tell an immediate difference . Of course, it's only day 2 now. But it seems my chest isn't pounding like it did, and I don't have as much heart racing as I normally would. This goes for even laying down/sitting/standing/walking...anything. I'm kind of "experimenting" -- going to exercise this week, and I will see how it helps then too.

Overall, there weren't any weird/scary/random side effects with Provigil for me, which means it's definitely up there as far as medicines I can tolerate. That's another reason it seems to be working well. Dr. Grubb did say that some people can be on as much as 400 mg/day -- over twice as much as I'm taking now. So we will see what happens!

Just thought I'd let you know that for me, it seems to really be helping so far.

Hope this helps!

Chrissy

Hi,

I haven't noticed any problems with my vision, but I do have burning in my eyes all the time. It's at its worst right when I wake up and soon after. I wear contacts, and some days it's impossible to put them in because of how much my eyes burn. I've gone to the optometrist and my eyes are fine -- the only thing she noticed was that I have very dry eyes. She told me to blink more -- -- and that would help.

I do use eye drops when it gets really bad, but I've noticed that the eye drops only help for a few minutes, then wear off...and I can't possibly be putting in eye drops every 2 minutes all day long . One thing that did help when they were pretty bad at night was to use gel eye drops -- you have to make sure you don't have your contacts in. It's a thicker formula than regular eye drops and seems to soothe better. But again, for me it wears off quickly.

I'm not sure why the eyes burn, but of course the answer is almost always "it's a part of POTS" -- oh joy

Hope this helps.

Chrissy