Updating on Carla

[carlacat]

Well here I am finding myself without health insurance and moving next month so I can get insurance. I havent been feeling too bad but the only time I have a problem is right around noon...then my head starts to feel floatie and I feel so tired. I have to lay down for about an hour. Dont know why this is happening and just around that time. I thought it was because I needed to eat lunch and that doesnt help, I even took one of my beta blockers and that did not help. Usually I take my meds at 8:00 am every morning. Does anyone else have this feeling??

Since we are in the process of moving I had to get all new docs in Burlington Vermont which is where we are moving to. What a pain to have everything switched...neuro doc, cardio doc and reg primary doc. My appts are in June and its a good thing cause my meds are getting low.

Hope all is doing okay.

I saw something about drinking on here somewhere..I'm scared too death to even take a sip with all meds I'm taking. LOL

Carla

[Deb]

Hi Carla,

I have the same thing. I am completely guessing, but I think in my case it has to do with the midodrine wearing off. I take my midodrine at 5 am with a large glass of water while I am still in bed, and then get up at 5:30. Midodrine only lasts about four hours. I start getting sleepy around 9 or 9:30 almost every day. I think my blood pressure goes down and that causes the sleepiness. I can take a walk, but as soon as I sit back down, I start falling asleep. I also feel very heavy, like I'm underwater. This lasts anywhere from 30 minutes to an hour and a half.

I was doing some research about POTS a few days ago because I have these periods of brain fog that are really hard to deal with at work. I found an article written by a doctor who specializes in orthostatic hypotension which is my biggest POTS problem. In the article, the doctor suggested drinking coffee at breakfast and lunch to help with the low blood pressure caused by the blood pooling in the gut. So, this morning I had a cup of coffee with breakfast and iced tea with lunch, and it is the first time in a couple of weeks that I didn't get sleepy or have an episode of brain fog.

I don't know if the coffee and tea helped the sleepiness or prevented the brain fog, or if I was just having a good day but, I'm going to try it tomorrow and Sunday while I'm off from work to see how I do. I'm not suggesting that you or anyone else try this, but I believe it's something to talk over with your doctor to see what they think.

[Merrill]

I can't remember where I read this, but I do recall reading a recommendation to drink a cup or two of strong coffee before getting out of bed in the morning (if you can tolerate it and it doesn't make the tachycardia worse and you don't get jittery). This is for folks who have the hypotension (low bp) with pots... I wish I could find that article! But I read it too...

[Dawg Tired]

I read that too, I always start the day with a big cup of coffee. It does seem to help.

[hilfgirl33]

The coffee thing is really interesting to me because caffeine sends me into a total frenzy. I always feel like I have just had a pot of coffee anyway, I can't see drinking more....

Very interesting....

[carlacat]

I do drink coffee in the morning so maybe thats why I feel okay then, so I will try the coffee at noon. I usually wait until about 3:00 Pm before I make more coffee and I do feel good to go til bedtime.

I will try the noon coffee tomarrow and see what happens.

Thanks

Carla

[Sue]

I have been doing the coffee thing for a while now. I found regular coffee was too much for me/and decaf was kind of gross. Now I buy Maxwell House LIGHT/it has half the caffeine and after I played with coffee/water ratial its not bad!!! and it helps me.

Good Luck

Sue

[EarthMother]

Does it happen regardless of what you eat? Or rather if you eat at all? I noticed for quiet some time that I had to lie down for an hour after eating lunch simply because I didn't have the blood volume (or whatever this strange thing is) to both digest + stand or sit up.

It's been better, lately, but I still can't plan anything right after meals.

If I have a meeting, or business to attend to, I skip having a formal meal altogether. Instead I nibble on cheese, soy deli meats, walnuts, almonds, raisons and keep drinking water or hot tea. Then when deadlines have passed I can eat a larger meal, as I know I'll be able to crash for a while.

Good luck,

EM

[Jersey Girl]

I also get this same phenomena. I am not sure if it is related to how much I have eaten or not. I usaully try to have a salad for lunch and it still happens. I feel very tired and dizzy so not sure if it is related to just being exhausted at that time as well. I usually lie down for at least 1/2 hour, sometimes an hour. and it helps for the rest of the day.

[carlacat]

I would love to know why this is...okay whoever goes to the doctor next..please ask this question.

I tried the coffee and it didnt help a whole lot. Maybe I should drink ice tea or Mountain Dew..Really get the caffine buzz. LOL

Carla

[Deb]

Well I've gone almost a week now with my coffee trial. I've been having coffee in the morning, 1 to 2 cups, and the sleepiness/fatigue I was experiencing each morning around 9 or 930 hasn't happened, except for today. But I was wired up last night and couldn't get to sleep at my normal time, so I think that's to be expected.

I believe the coffee is working because I think my blood pressure is droping around that time. I'm now taking my Midodine (to increase my BP) at 5 am, 1030 am, and 4 pm. It seems to help keep me alert in the afternoon. And, I think I am sleeping better, overall. I used to get really strong heart beats when I laid down at night, but those are much less now. I think I needed to give the Midodrine more time to leave my system. I changed the times that I was taking the med. because I read that BP usually increases during the day, so I think it might have been too high in the evenings.

[purplefocus]

Hey Carla,

Hope you are doing great today. I do the coffee thing also. It really helps. About "MOUNTAIN DEW"..........the doctor that did my tilt table test ask me if I drank alot of mountain dew and of course I did to help give me energy. He told me I shouldn't drink it, he said that there was something in it that after about 30 minutes that actually it would make my symptoms worse. I did stop the mountain dew because of what he said but I never questioned it any futher. I still will have an occasional Dr. Pepper or Pepsi.

Paige

[carlacat]

I didnt really like Mountain dew anyways..LOL

I'll keep trying the coffee thing..its awful to say but I think I felt better when I smoked a cig. I quit Nov 2003 but I think it kept my blood pressure up. If I'm right I think smoking tightens up your veins..thats probably why.

Carla