kitchmill

The Wiggles are huge in the US also. But you probably wouldn't know them if you don't have young kids. My kids love them! We've been to several Wiggles shows, both with Greg and one now without him (with Sam, the new Yellow Wiggle).

In my pre-op appointment with my ENT, I told him that I have NCS (that is my official diagnosis although the Cardiologist and I think POTS but he could not prove that). He right away knew what it was and asked me questions about it. Also, when meeting with the anesthesiologist yesterday before my surgery, he asked why I take Midrodrine and if I had any heart problems. Of course, I said I have NCS with low blood pressure, and slight tachy. He started asking me all kinds of questions once I said NCS, like how often do I pass out and what else happens to me. I was so glad to not have to sit there and explain it all to him. Better yet, I was SO happy that he was thorough and taking all of that into consideration in what he was going to do with my anesthesia! He said, "I will watch your blood pressure and make sure it does not go below 90."

Melissa, thank you for your information! My son is definitely a really heavy sleeper too, which is what we've attributed the nighttime wetting to. The pediatrician told us it is hereditary, and my DH apparently had similar issues as a child. He says he once fell out of the top bunk of a bunk bed and kept on sleeping! So we figured that like DH, our son would eventually grow out of it. But it's really the daytime wetting that bothers me. When he has an accident, he swears he doesn't even notice it. I'm at a loss. I mentioned this post to my DH last night and said that maybe he has some other dysautonomia symptoms that we don't know about. I explained to him that as a child, I didn't know any different so I never said anything to anyone about my symptoms.

Wow, I had no idea that this could be a POTS symptom. I have a 5 year old boy that has been to the urologist a ton of times already for inability to hold his urine. He's in Kindergarten and needs to wear a timer watch to tell him when to go, and even then he still has accidents for no reason. He also still soaks his Pull-ups at night. We've tried a bunch of things to help him, and the most recent is diet change. Not sure if it's helping or not, but we did notice that the day after he had a big cup of cranberry juice, he had a bunch of accidents. Sounds like we may need to look into some other medical avenues.

So glad to hear that you're doing better! Continued healing thoughts for you.

It figures, I have actually been having a decent year as far as not getting sick. But 2 weeks ago I came down with Strep, was on an antibiotic which worked, but on the last day of the antibiotic I started to get a cold. That was Friday. By Saturday, my throat hurt, and today it hurts even worse! It figures that this would happen right before my surgery!!! Of course, if I'm sick they won't do the procedure. I'm scheduled to arrive at the hospital at 6AM to have this cyst on my neck (the doctor thinks it's a branchial cyst) removed. I've actually been looking forward to this (although quite unnerved about it) because I can't stand this lump. It gets inflamed and hurts, plus my cardiologist thinks it might have something to do with my chronic fatigue. Because of the surgery, I'm restricted from the meds that I can take right now. Can't take vitamin C or Zinc, and no ibuprofen. Tylenol only, which is a joke because it does nothing for me. Please pray they don't reschedule the surgery when I show up there with a cold tomorrow morning!

I don't take it before bed, but have found that the few times that I've tried to take a nap not long after taking it, I wasn't able to fall asleep even though I was really tired. My blood pressure also doesn't go up much so I don't know what causes it.

I get massages infrequently, but when I do get them, they definitely help with my coathanger pain. The problem is that I KNOW that after a good massage, I'm going to end up with a doozy of a migraine. But once that is gone, I am usually good for about 2 weeks. One other thing that I have found to help me is acupuncture. My acupuncturist is an MD, so I always talk to him about my current meds or what else is going on with me. I've been going for over a year (first every week, then every 2 weeks, and soon I will probably drop to once a month) and this has greatly reduced my migraines. When I started going, I was taking 175mg of Topamax and couldn't stand the side effects. Right now I am almost totally weaned off of the Topamax and can take Excedrin to get rid of my migraines instead of prescription migraine medicine. My intolerance to the rx migraine meds is what sparked this, since I had "off label" side effects from every one of them (and I've tried every class!) and hated taking the meds more than I hated the migraines! So, even though I still get infrequent migraines, the intensity is much less and I can take a dose of Excedrin which I can tolerate.

I am skinny but not necessarily tall (5'6"), but I am under BMI. That's an interesting correlation.

I always thought it was a lymph node, but it seems that I was wrong. The ENT has seen lots of these and said it is a cyst (he thinks a branchial, but the type is not so important). I had a needle biopsy that showed that it had some cystic properties but was inconclusive as to the exact type. But a cyst is still a foreign body, and could be infected. This all would make too much sense, since many of my symptoms date back to early college (although my POTS episodes started way before that).

I scheduled the surgery to remove the cyst on my neck for mid-December. My ENT is convinced it is the branchial cyst, but I have a CT scan this week to check it one more time. I'm a bit nervous about the surgery, but will be happy to have this thing removed. But in an interesting twist, I had a cardiologist appointment today and we once again discussed my fatigue. My doc said that he's been doing some reading (yay for a doc who's actually trying to continually educate himself! ) on various causes of chronic fatigue and - in passing - mentioned that sometimes it can be caused by a chronic infection or virus. He started to go on to say something else and I stopped him to discuss this lump on my neck. Essentially "chronic infection" is a good way to describe this cyst. Once he heard this, and looked at it, he had an "aha" moment and said that it is very possible that this has been causing my fatigue. Clearly, no guarantee, but wouldn't it be nice if the fatigue got better after having the surgery?! The cyst has been here for at least 15 years, when I was a freshman in college, and well the fatigue has probably been here that long too! Who would have thought that a lump on my neck would be in any way related to fatigue?

A bunch of us were talking about lumps on our necks a few weeks ago, and I think most of us thought they were lymph nodes that occasionally got swollen. Well, I had mine checked out and it turns out it's actually a cyst. I went to an ENT, and he did a needle biopsy and we're waiting for the results from that. But the doc was pretty sure that it's something called a Branchial Cyst. It seems that this cyst is actually a birth defect, and it doesn't always show up until you have a URI or something of that sort. I first remember noticing mine when I was a freshman in college, in 1993. And I've had about a million URI's since then. Bottom line, the ENT said that it will need to come out. Not immediately, he wants to look at it further (possibly another ultrasound or some other tests, in addition to the results from the biopsy), but at some point it needs to go because it can become infected or abcessed. As I'm sure all of you know, the thought of any surgery, no matter how minor, is scary! I'm just hoping that maybe this has been the source of some of my problems (frequent ear problems, sore throats, etc.) and maybe at least I'll improve in some way. But I just am not looking forward to having surgery! To make matters worse, I've felt like I have the flu ever since he stuck a needle in there. Not what I need right now.

Val... that's exactly how (and where) mine is, except it's only on the left side and it NEVER gets smaller than about the size of a quarter. Just blows up to about the size of an egg when it's swollen (worse). I'm glad to hear that yours is nothing of concern, although mine is somewhat painful on a regular basis (probably since it is constantly swollen) and quite annoying.

If I have CFS, it's also mild in nature (as is my POTS), but I definitely think it's there. It's not debilitating fatigue, but definitely exercise intolerance and I get ill after any kind of major exertion (taking the kids to the zoo type of activities). Even after a short vacation, I have learned to take an extra day off before going back to work so I don't overdo it by pushing myself too far. I have always required more than the typical 8 hours of sleep, and many times I wake up unrefreshed. I don't know about the rheumy... my cardio mentioned CFS and then he said that I would go see a rheumy. I have no idea if that's the right doc to see for it or not! I do get some joint pain, but that is not my predominant problem.

Still not corrected a day later... I just replied to the email that was sent to me telling me that it would be corrected. Irresponsible!

Very interesting that you posted this! I had no idea this was related to CFS. I've had one bad swollen lymph node on my throat for YEARS. It gets better and worse, but never goes away. It's typically the worst in the mornings and then gets better over the course of a few hours. I had mentioned it to several doctors over the years, but like everything else, it got brushed off. Finally, after it being constantly swollen for 2 weeks straight, my PCP decided to send me for an ultrasound. He thought it could be my thyroid, but I knew from the placement that it was much too high on my neck to be my thyroid. Anyway, I took the rx for the ultrasound and had it done yesterday. The technician agreed that it has nothing to do with my thyroid. She even said that I have a small thyroid! And this is nowhere near it. She suspects that it's a lymph node, but I won't know for sure until the doctor reviews the report and sends it to my PCP. I'm just glad that even though she was scanning it on a "good" day, there was still plenty for her to see. Interesting that there is a link between this and CFS... I have always thought I should be classified as CFS but never knew where to start on that. Now, with a POTS diagnosis, I'm finding out that indeed many CFS people have POTS, and not the other way around. My cardiologist suggested that I see a rheumatologist for possible CFS, but only if he couldn't help me a bit more first. Is a rheumatologist even the right place to go?

Geez, how long does it take to correct this? It's been 7 hours since I emailed them! There was a link to contact them at the bottom of the article.

Got a response... supposedly they are correcting the article now. They thanked me for my comment.

I could not help myself... I just emailed the contact for the article and asked them to correct it. I signed it "Someone who has POTS but not autism."

I also have tinnitus constantly. Loud noises do bother me, and I'm constantly asking my husband to turn down the music (he's a musician) but not on a regular basis. Just when it gets too loud, KWIM?

I agree that massage helps immensely! I have coat hanger pain almost constantly, and every now and then I get a good massage where they concentrate on the neck/shoulder/related areas and it really relieves the pain for a while. If you have a Healing Hands chain in your area, I highly recommend them! Reasonable prices, and well trained staff. (You don't need to go to a spa for a good massage.) The last massage I had, the therapist only did upper body so she focused the whole hour on mostly my neck and shoulders. I have to say though, since I started Midodrine a few weeks ago, I feel like my pain has lessened... and my migraines have gotten better (although time will tell with that). I don't know if the increased blood flow to my brain has helped keep the pain away, but it sure feels like it!

Thanks for the info, Nina. *If I had an 8 hour day...* HA! I'm thinking that if it works, twice a day wouldn't be enough. I work full time and have 2 active young children, so my time on my feet each day is minimum 15 hours (of course, I have a desk job, but you know what I mean). And of course, I am really sensitive to meds. Kind of hesitant to start with 5mg. Wondering if I should just try the 10mg daily dose split up over 4 doses instead of 2 to begin with and see how that works. At least I would know that I can still up it to 5mg, and can always call my doc if I am noticing it wear off too early. He wants to see me again in 2 month anyway, but I can call earlier.

My cardiologist prescribed Midodrine for me today at 2x/day, 5mg each dose. I thought that I've read most people take it more often than that, or start with smaller doses and work their way up. Any thoughts on this? Should I split the pills to start? Also, he prescribed it INSTEAD of my beta blocker, which was doing just fine to control the vast majority of my episodes. I thought he would add a small amount of Midodrine with the BB to help control the remaining episodes... Starting to wonder if he knows what he's doing.

Wondering if the theory of low BP causing not enough blood to reach your head (migraines) or circulate in your body (fatigue) is helped by raising the BP with Midodrine. I had intolerable side effects with Florinef, so I'm wondering if I should push convincing my cardio to try Midodrine at my appointment tomorrow. My neurologist seemed to think that would be a good option, but said the cardiologist would need to be the one to prescribe it. Thoughts?

I see one for my thyroid problem. She doesn't treat my POTS at all.