Sorry, More POTS questions

[ramakentesh]

Sorry guys, i was just wondering a few more things.

Firstly, does anyone else get periods when their symptoms are bad where they dont sleep properly, like they sleep lightly and feel uncomfortable or wired all night?

Im also booked in for the TTT two days before i leave for a trip overseas - ive been told that it really messes with you and that it aggrevates your symptoms. SHould i postpone or get it over with.

Also i get lightheaded when i stretch my head back and my head fills with blood when i lean forward and i can feel my heart pounding when i do that.

Lastly, in many articles it says that people with pots get better after around 52 months - does this sound right??

Does anyone else feel cold all the time?

[MomtoGiuliana]

Keep asking all the questions you want! Believe me, the discussions don't just help you--but many others too.

Yes, I have had bad nighttime spells like you describe. Overall, not as bad as 18-24 months ago when my POTS was its worst.

I didn't find the TTT to aggravate my symptoms, but I was quite sick when I finally had it done.

On your airplane trip make sure you keep fluids and electrolytes up as air travel is very drying and the air is also somewhat oxygen-depleted.

You may find that to be more challenging than the TTT?

I think the sensations when you move your head back and forth are a common POTS symptom. I used to get that too. Sometimes I still do and just have to move my head slowly to avoid getting that!

Recovery varies tremendously as does the definition of it. I would say I am recovered, but I still have difficult spells and I am still on medications. I was diagnosed about 18 months ago. I now work part-time and care for my 22 month old. Basically, my life is "normal"--but I do have to be careful with diet, getting adequate rest, enough fluids. I can't exercise like I used to, but I try to get some aerobic exercise every day--even if it is just climbing up and down the 3 flights of stairs at work. Climbing those stairs was first impossible, then very tough, and now manageable, most days.

Cold feeling--yes I used to get that--it seemed like my body couldn't control temp very well. I'd have hot followed by cold follwed by hot spells.

Take care. Hope you see some improvement soon.

[Ernie]

Hi,

Personally I would not be able to manage a TTT 2 days before going overseas. It takes me 5 days to recuperate from a TTT. I would wait until after my trip. I don't think 2 weeks later will make a difference in your diagnosis but you will have a much safer trip.

Ernie

[corina]

Hi,

I also have the sleeping problems you describe. And as apposed to a lot of other POTSpeople who can't stand the heat I get very bad in the cold. I'm feeling better when it's about 25 degrees Celsius. When the temperature is lower I become very cold (feels like a stone or maybe even as a dead body I'm very sorry to say it like this but this is how it feels to me) and symptomatic. It's like MomtoGiuliana says like your body can't control your temperature. I take a hot bath almost every day and make that comfortable by using all kinds of nice perfumes. After that I go in bed for about two hours to sleep. It's because I can't sleep when I'm that cold. Maybe this helps you as well. Good luck on your test and trip.

Corina

[ramakentesh]

Interestingly, lucky for me the receptionist called and cancelled the appointment and its now for the week after i get back.

Thanks for all reviewing and replying to my post.

I too am very cold sensitive and feel better in terms of symptoms when its warmer here (a hot day of 38C was too much for everyone i knew, but i felt quite well and even went out and washed the car - impossible during winter).

Do people all find that their dizziness and other symptoms are worst in the mornings? I fell tired in the mornings and dizzy until i have breakfast, then two hours later i feel bad again until about 2pm and then im steadily improving as the day progresses - late afternoon and nighttime im the best.

[MomtoGiuliana]

Yes, the diurnal cycle you describe is typical for me too. I would say, generally, I feel better as the day goes on. By the time it's time to go to bed, I feel my best, often. For some reason this is typical of this condition. May have to do with fluid levels and also diurnal hormonal changes.

[JLB]

MomtoGiuliana - Where can I read more about the diurnal cycle?

I have horrible trouble at bedtime - irr. h/b that keep me up until the wee hours sometimes. Could that be hormonal, as well? I never heard that before.

[MomtoGiuliana]

JLB--I don't know where to refer you to further reading--sorry! Someone else may. I just know that there is a dirurnal cycle associated with production of cortisol, for example. I am sure other hormones too. Supposedly, cortisol production can be disrupted a bit for POTS patients. I think this is really just a theory without much research to truly support it, unfortunately.

But, clearly many of us notice worse symptoms at particular times of day, so that suggests that there is something going on on a daily cycle for many of us.

Katherine

PS are you feeling any better than you were a few days ago?

[blackwolf]

I have to say that I am the prefect model "vampire". I function best at nite and late evening. This is ok for me as the kids are off to school at 7am and I can sleep more in the morning.

I also am at both extremes for heat and cold. I can't get hot and I can't get too cold. Both cause trouble and I have a hard time returning to "normal".

As to sleeping, what you discribe is an every nite thing. I cna't get to sleep, wake up often and rarely feel "rested".

Best of luck, Blackwolf

[lalalisa]

Yes! Another night owl here too!

I stay up really late partly because it's the only time I feel like I can think clearly. Also, I'm able to sleep in each morning.

I've also had sleep disturbances, I take generic benadryll and it helps me get to sleep.

Lisa