skyblu

Yes... it sounds like lucid dreaming. It's a weird experience but also kind of cool.

Melissa, my Vit D level was low (18) a few months ago. I didn't want to take any supplements so I've been sitting in the sun for about 7- 10 minutes a few days a week. Because, I don't do well in the heat I've had to do it before 10.00 am. I just had my level drawn again last week and I was surprised to see it's up to 27. Still a little low but much better. I think the trick is you need to be in direct sunlight without wearing sunscreen.

Sorry you ended up in the ER. My BP has always been high in the ER and now it's also always high/normal in doctors offices as well. I usually run on the low side at home although it's been known to spike sometimes.. And I know my cuff is accurate. I wouldn't worry about your BP unless it starts spiking all the time.

BTW...CT's are not the best way to diagnose sinus infections. If you've had past infections or sinus problems it leaves scarring which can mimic an infection on a scan. The only true way to diagnose a bacterial infection is by a nasal swab. And as it turns out... most sinus infections are viral so antibiotics don't help. I know this from being over diagnosed with sinus infections for several years in the late 90's. I was on so many antibiotics I developed an allergy to most of them. I finally have a good ENT who uses a swab if I think I have an infection. And since he's been my doc ( for 8 years) I've never had a swab which has shown an infection.

Hope you feel better.

Yes. .my temp is often 95.5 in the winter or if I'm feeling cold. It's been as low as 94.5. And as usual.... I can't get an answer from any of my docs as to why it's so low. When I'm sick I'm still able to run a fever.

I figure it's just another one of those weird body things that goes along with having dysautonomia.

I'm only able to walk for about 15 minutes at a time.....then I need to rest. My endurance has gotten really bad since I've been sick. I live at elevation and can walk for a longer time when I'm at sea level. But that's probably because of the extra red blood cells and oxygen that people who live higher elevation initially get when they go down to a lower altitude. Standing still, like in a line is always is a problem for me.

In the good old days I used to be able to walk for hours without getting tired.

Ruekat,

I know how scary it can be when we get new symtoms or when an old symptom pattern changes. I have flucuations in my BP but it's usually more on the low side than high. That pattern changed for a while last January after I got over a virus which I had for 6 weeks. My BP was high and stayed that way for three months. Then out of nowhere it went back to being more on the low side again. I remember being more worried about the high BP than I am about it being low because I'm more used to having a low BP.

I think BP and HR flucuations are just the nature of this disorder.

Maxine, I often have BP readings as low as yours when I'm sitting. And these days my HR is often in 50's, even when my BP is low. Sometimes I have high normal BP readings as well.. I've given up trying to figure it all out.

I have neck/ C spine issues as well but I don't think it's connected to my BP problems. I have a consult with a neurosurgeon in a few weeks.

Hope you don't end up getting sick.

I get those surges sometimes. It feels like a fight or flight kind of feeling. Not like a typical panic attack or anxiety. Almost feels like a steroid rush. It's a very uncomfortable feeling and with me it can last for hours.

Congrats. That's great news.

Have you ever tried fiber supplements like Citrucel? I take them for IBS. You start out slowly and increase the dose. It helps with both constipation and diarrhea.

Thanks Julie.

I usually have the opposite problem. 100/70 or 90/65 might be a common reading for me although I get plenty of 80/50 or 80/60 readings.

Is the swine flu itself really worse than standard annual flu--or is it being hyped by the media? 30,000 +/- people die from flu every year...are a higher % dying from swine flu?

"They" (Media) are guessing that 90,000 US citizens will die from swine flu this year. I have an impaired immune system and will be getting both vaccines. I have had the flu shot before without incident. Dr. Rowe at Hopkins says folks with dysautonomia have to be careful with the flu vaccines. He says, if you've had it before without incident, feel free to do so again. I haven't asked about the swine flu vaccine.

Julie

Do you have a link to where Dr Rowe said that about dysautonomia and flu shots? If not....do you know why he said we need to be careful?

I received the swine flu shot in 1976 and remember feeling like I had the flu for a few days afterwards. I feel fortunate that was my only side effect.

I got a regular flu shot a few years ago and ended up being sick with a flu like illness for 5 weeks afterwards. There was probably no connection to the shot and my getting sick but now I'm afraid to get one.

I'm especially concerned about the safety of the H1N1 shot because it's still so new and they rushed to make it.

Yes, MSG can definately aggravate our symptoms. MSG is a flavor enhancer, and in my personal opinion it should not be added to any food product.

MSG makes me very sick, and I feel so shaky with tachycardia, tremors, bloat, ect. I honestly want to climb out of my own skin if I eat anything with MSG. I always make sure foods don't have msg before I buy them, and ask at restaurants when I go.

Maxine :0)

I agree Maxine. MSG should always be avoided. As should processed meats.

The thing my (docs and dentists) have a hard time with is that I don't know how I'm going to feel until I wake up in the morning . They assume if I already know I'm not feeling well I can just cancel the day before. They don't get that some days are better than others.

I've had chronic hives for the past 13 years. I initially got them after taking an antibiotic and then started getting them on a daily basis. Sometimes I'll have a few months where I'm hive free but they always come back.

I've had a lot of tests and they can't come up with a reason as to why I get them. Not sure if I had the test you're talking about.

I can relate to what your going through. My husband isn't able to take off a lot off time from work so I try to save the really big appointments, GI, cardiologists and other specialists for when he can take me. I'm on my own for other appointments such as hair, PCP and dentist etc.... I end up cancelling and rescheduling a lot and it's very frustrating. I'm constantly stressed when I know I have upcoming appointments because I never know if I'll be able to get myself there.

I'm thinking of changing dentists because it seems mine isn't willing to work around my illness. He filled a tooth last week and I just got a new mouth guard as well. I'm experiencing a lot of pain and I'm not sure if it's because of the tooth he filled or if the mouth guard is causing problems. I called this morning and they can take me at 11.00 tomorow morning. I asked if he can see me earlier because there's a better chance I can get myself there if the appointment is first thing in the morning. I explained about the health issues ( for the 50th time) but it didn't seem to matter. I've gone to this guy for the past 17 years...I'm sure he could squeeze me in earlier if he cared enough..

LOL....the only one who always works around me is my hair stylsit. She'll come to my home if I can't make it in to the salon.

Besides your BP being being low..... it also looks like your pulse pressure is narrow in some of those readings.

My BP can get as low as 70/40 and many time it's 80/50. I'm not on any meds so the only thing I can do is to drink a lot of fluids when it gets low like that. Same thing when I get the narrow pulse pressure.. The combo of narrow pulse pressure and low BP can make you feel pretty yucky.

Oh boy I really despise feeling that way. For me, my pulse pressure (the difference between my two blood pressure readings) is too narrow. Narrow to me is 30 point or less. That has been my normal and it makes me feel DEAD and unable to move.

If you learn how to combat this, let me know. Also, maybe you are low on potassium or some electrolyte. That can make you weak.

The narow pulse pressure feels awful. Loading up on fluids can help with it but it's only a temporary fix.

That's one reason for feeling weak. Not sure what others are but I sure feel that way a lot.

I don't sleep very well...I wake up a lot and often can't fall asleep. I average around 5-6 hours a night. But if I fall back to sleep after I wake up in the morning I usually feel worse during the day.

Erika.. Yes... I feel fortunate to be able to email my cardiologist. It beats having to go in for every little question or when my symptoms change which seems to happen frequently.

Jana, thanks...I always thought low 50's was considered bradycardia. I have a feeling my cardiologist is going to say there's nothing he can do or will do for the low HR unless I'm symptomatic which to him probably means passing out.

Thanks Jana. I wore an event monitor for a month in March but that was during a time when I was having tachy episodes. I don't know if it picked up any brady episodes as well. Holtor monitors and event monitors in the past have picked up some brady episodes but for some reason my cardio sort of brushed it off and wasn't concerned.

The thing that's different now is it's constant. Do cardiologists not consider a constant HR in the low 50's or high 40's to be bradycardia,..? LOL...considering I'm not an athlete.

I'm glad your son is doing better, Angela...... you must be so relieved.

I was just going to start a thread on low HR. I'm not on any meds except Ativan for sleep and I have episodes low heart rates that can last for days. In the low 50's and high 40's when I sleep. I think I feel more sluggish when my HR is low all the time.

My cardio doesn't seem too concerned....he thinks it's all part of my dysuatonomia....in my case erractic BP and HR. But I'm going to email him tomorrow because I'm not sure when low becomes too low.