Hi!

[Evie]

Hi Everyone!

Its so nice to see so many people who appear to have similar experiences to myself (well its not nice that we all have to suffer but its somewhat comforting to know i am not alone). Also so many random symptoms we seem to share! like not being able to travel on aeroplanes and throat swells. I realise how loony these sorts of symptoms must sound to everyday people.

I had been meaning to introduce myself but never got around to it. Hi my name is Eve. I was diagnosed with chronic fatigue 6 years ago (when i was 16) and last week was diagnosed with Othostatic Intolerance and given information on POTS and NSC. (the neurologist said it was post viral infection)

I am a bit confused by what actual box i fit into if i do indeed fit into either. Basically if i wake up in the morning before 11ish my muscles all hurt and if i get up i usually cant manage to stand for more than a minute or so without fainting. However if i stay in my bed and slowly move my body the pain tends to go away and i am usually able to get up and move about. However i still occasionally randomly faint through the day or get dizzy/shaky.

Does this sound familiar to anyone? Does anyone else mainly suffer of the morning?

Over time i have improved. Originally i could not walk but now i am studying part time and most of the time can get around as long as i dont strain myself too much. The specialists (a neurologist and endocrinologist) have upped my flurdrocortisone dose and given me doxepin 3mg to help me sleep. I use to use stillnox but sleeping tablets are dangerous long term (however they got me through last semester).

I also am being told to get up eariler to reset my body clock (sounds easy but is really tough for me to do). To do yoga or light exercise but not to an extent that i will 'pay for it' .... that balance is hard to find isnt it. I am also trying pain management through CBT and hypnosis. Has anyone else tried this?

Also i was wondering if anyone wears medical bracelets when they are out in case you faint or have a bad turn? I get scared as sometimes i cant see where im going or walk very well so its been suggested i may want to get a bracelet. Just wondering what you actually have written on yours and if its any help.

Sorry for the essay on myself and all the questions. Hope you are all having a good day

[Eillyre]

Hi Evie! Glad to finally meet you -- I had noticed your posts a number of times the last few days, but didn't know when you'd joined!

I'm a CFS & POTS combo myself. Like you, mornings were the worst time for me. I felt very achy and couldn't get out of bed very well without crumpling to the floor or falling back on the bed to avoid the floor. Nice to have an alternative -- keep my options open, you know! Anyhow, I found, just as you did, that slowly progressing up to getting out of bed was the best answer. I was getting up 1-3 hours earlier than my normal wake-up time and would start to inch my way up to sitting, starting to get my arms & legs moving a little, too.

Once I was out of bed, I would get so lightheaded walking to the bathroom that I'd lie down on the floor to avoid completely fainting. It took me many sit down or lying down rest breaks to eventually get my breakfast prepared (became good friends with the kitchen floor!) and out to the dining room table. Then I'd have to rest before, during, and after eating -- my spoon just felt SO heavy. My family got used to seeing me stare at it, as if willing it to teleport up to my mouth on its own. I'd stumble over to the couch and spend some time there resting and eventually get around to brushing my teeth, hair, etc. I usually started to perk up around 11am, too, but the rest of the day was not significantly better than my mornings.

All of that changed once I was able to get up to high enough doses of Mestinon & neurohelp supplements. Now I can usually wake up and pop right out of bed; I was even able to start walking around the block this week!

I was also having major sleeping problems, usually able to sleep unrefreshingly for 2-5 hourse a night, waking up many times in between with agonizing body aches. I was always freezing cold (night & day), so layered pajamas, quilts, and electric blanket were musts. 3mg of Melatonin each night seemed to do the trick on my sleeping. The first night I tried it I was able to get 6 hours of refreshing sleep, waking up three times without any pain. It's gradually improved to the point that I can usually get 8-9 hours of refreshing sleep with 2-3 brief awakenings. I only start to get little twinges of those aches if I've really worn myself out that day. I wouldn't say that my sleep is good, but tremendously better than before -- it's helped clear up some of the symptoms like always feeling cold, too. I also like that it's relatively natural & non-habit forming; nights that I have not taken it my sleep is usually worse, but I don't have withdrawal symptoms or anything like that. My trusty iPod still stays right by my bed, so I can listen to soothing music when I have trouble sleeping -- I figure if I at least rest quietly for a number of hours, it's better for my brain than trying to be up doing something.

Along the lines of medical alert jewelry, I opted for a necklace pendant over a bracelet because I could fit more info on it. Mine has two sliding discs that can be opened up -- red medical alert symbol on front with three faces for writing (I think you can get them with more dics if you want). It the time, mine needed to say "partial complex seizures" and "bizarre migraines -- NO imitrex", but now that I'm starting to be up walking, I'm going to get another pendant to add on my little chain for CFS and Postural Orthostatic Tachycardia Syndrome (no one seems to understand the initials) -- Mestinon. I always keep a contact phone number in my pocket -- our area code has changed enough over the years I didn't see the point in engraving it on the pendant. Thankfully, I've never had any occasion for someone to have to use the medi-alert information, but I do like to have it as a precaution. I was living in NYC, so my dad insisted on it. After working in NYC emergency rooms himself, he said that the staff would contribute my strange migraine symptoms to drugs or alcohol (unless they had a medi-alert stating otherwise), so I'd get very poor care.

Glad to hear that you've been able to get positive diagnoses and are able to function a little better than before. I don't really know about the hypnotism etc. for resetting your body clock, but I hope you find something that works; I had to reset mine living in the city before I got sick, so I was already on a good schedule.

Welcome again!

Angela

[JaneEyre9]

Hi Evie!

Glad to meet you. Also glad to hear you've been improving so that you can study some now. I have POTS and also have trouble in the morning as you described. It's very very difficult for me because i'm so dizzy early in the day. It takes me so long to get ready also because of brain fog and having to lie down after a shower because i feel faint. I've learned that it's much better for me to shower at night to avoid this. I don't battle the muscle aches as much anymore. I do have those as a symptom of MCS (Multiple Chemical Sensitivity), but that is now under control as long as i avoid my triggers.

It's good too meet you, and i agree that it's nice to finally find people who understand me saying "my throat swells sometimes" and don't tell me to get a strep test.

Kristen

[steph37822]

oops

[Evie]

Hi guys! thanks for the kind welcome

I use to use melatonin but for some reason after a few days or so id start to get stomach pains and feel really edgy. Like my skin would break out and i would feel irritated. I was on a really low dose as if i took a normal dose id be knocked out still the next morning and it would be impossible to wake me heh. I think my body is very sensitive as i get the edgy feeling when i use quite a few medications. Why must our bodies make it so complicated grrrr

steph37822 is there any tests you need done to check your blood flow volume? Sounds like you had a great reaction to it, at least they finally found out what could have helped you at that time

JaneEyre9 are there any tests to know what chemicals you are most sensitive to? I advoid chemicals and i know that chlorine is a major trigger for me and one of my drs told me to advoid fluroide. I try to advoid everything as much as i can but it would be nice to cut it down or to at least know what to really look out for Glad to hear that it has helped you!

Wait did anyone actually mention melatonin? i just reread and i think i am confusing it with Eillyre mentioning Mestinon. Im pretty sleepy atm and have to run to uni so i will reread it when i get home later. I will do some research on what Mestinon is.

My drs said they want to try me on the least medicinces possible to start with and then see how it goes. I guess i have to try and get my body to fix itself. ive been trying to exercise and get up early ... im buggerd after less than a week haha.

[Sunfish]

hi eve-

welcome! sorry you have reason to be here but glad you found the board. as you've already noticed, there is a lot of good info here & great people to go along with it.

i'm 25 and have autonomic neuropathy, OI/POTS, NCS, & other miscellaneous fun that may or may not be related.

as i hadn't had a chance to respond to your other post/question re: CFS & POTS/OI/NCS so i'll do that briefly here...

others have pretty much summed it up, but different docs have different takes on whether one can have both diagnoses. some say yes, some say that if you have dysautonomia that can explain any symptoms and thus you don't also have CFS. honestly i think it's all a matter of terminology and as long as all the issues/symptoms/possible causes are being addressed the names don't matter so much. but, that said, finding out you have OI/POTS and/or NCS after struggling with CFS can definitely be a new avenue of treatment which can be a good thing.

most, though not all, folks with OI/POTS and/or NCS and/or other autonomic dysfunction deal with some degree of fatigue. it varies from person to person and from day to day, but it's something i've definitely struggled with over the years to varying degrees.

regarding not knowing if your heart rate is actually high or not, realize that people aren't always aware of it. while many feel palpatations, not all do. some instead feel fatigued or short of breath or any other number of things. obviously i can't say what your situation is with HR, but i know that initially i wasn't aware of how wacky mine was at times...

and mornings are notorious for being the roughest for people, so you're definitely not alone there.

as far as a medical alert bracelet, i have one as do many others here. mine has a primary diagnosis but then a number to call where all my medical info is on file, including meds i'm on, diagnoses, allergies, etc. so that the space isn't a limiting factor.

there have been previous posts on the bracelets, as well as on the med mestinon that some others mentioned to you earlier. i'll post the links for you and/or you can search for them (the search feature is in the upper right hand corner of the screen).

again, welcome!

:-)melissa

[Sunfish]

evie-

here are a few of the discussions on mestinon:

http://dinet.ipbhost.com/index.php?showtop...918&hl=mestinon

http://dinet.ipbhost.com/index.php?showtop...792&hl=mestinon

http://dinet.ipbhost.com/index.php?showtop...401&hl=mestinon

and here are a few about medical alert bracelets:

http://dinet.ipbhost.com/index.php?showtop...=alert+bracelet

http://dinet.ipbhost.com/index.php?showtop...=alert+bracelet

http://dinet.ipbhost.com/index.php?showtop...=alert+bracelet

there is also info on the places to get bracelets in the "help yourself" area at the top of the forum where MightyMouse has LOTS of helpful links. you can go directly there via:

http://dinet.ipbhost.com/index.php?showtopic=1954

hope this helps,

:-)melissa

[JaneEyre9]

Hi Evie,

My main triggers are usually pesticides or places with extensive mold/water damage. I react almost instantly to these things and have since my initial serious exposures my senior year of high school. No real test was needed to prove this. I would always get sick instantly when near a trigger and after recovery time, feel well when I was away from it.

At my most sensitive, everything would set me off...

Some of these triggers can include: Cigarette smoke, car exhaust, photocopier toner, gasoline, perfumes, new carpeting, building materials, new paints, or anything that would off-gas formaldehyde, chlorine, or benzene among other toxic chemicals which can be damaging.

There's no test for sensitivity to these things because it's not like an allergy where you could get a skin reaction. They aren't healthy for anyone, but most people can tolerate them with no noticeable side effects. Someone who is sensitive could get mental clouding, muscle aches, swollen lymph nodes, fatigue, dizziness...your basic fun package of flu-like symptoms.

Sadly, it's hard to avoid these things in everyday life...especially when the county decides to do city-wide pesticide sprayings, or when your next-door neighbor flea-bombs their apartment. Even places like Wal-mart, a movie theater, or a grocery store can be routinely treated with chemicals.

To take care of myself, I try to eat organic fruits and veggies. We try to use chem-free/dye-free soaps and cleaners as much as we can around the house. We hepa-filter our air vents with replaceable filters. All this can't protect me from the world, but it certainly helps cut down on my MCS symptoms. Avoid avoid avoid. I wish that worked for POTS too, but sadly, no.

Hope this helps. Is there any reason you are specifically sensitive to chlorine?

Kristen

[steph37822]

oops

[Evie]

Oh good luck steph i hope you get the results you are wanting

Eillyre the reason i know to advoid chlorine is because thats the first thing that use to make me faint. Even before i had CFS i use to faint at school when we did swimming. I thought it was exercised induced asthma. When i was 12 i was representing the school for swimming. At 13 i could not make it to the end of the pool i was just so weak. Now i think it was due to chlorine but at the time i just thought i was unfit (strange given i could play tennis and do dancing... i just didnt think it was serious... hindsight shows me it was a obvious clue).

Im not sure why my dr told me to advoid fluride... it was a few years back now. He was looking at results of my liver and digestion tests so im not sure if that was anything to do with it.

Cool, thanks for all the links melissa! i will start having a browse after i eat dinner.

Btw i live in australia. Is anyone else from down under?

[Aprilmarie52]

Hi Eve and welcome. I have a worse time in the morning, too. It seems from the time I get out of bed my heart is racing. It usually goes away after about an hour. I just assumed that it was because I was laying down for so long and my body just had to get used to being upright again.

[Sunfish]

hi again -

i'm not from down under but would love to visit!

regarding your question about blood volume testing, i had the testing with dye that steph mentioned and had written up the following description for someone in an email that gives the full run-down:

"i had my blood volume testing while i was an inpatient research patient at vanderbilt in may. the testing was done by one of the autonomic docs & took a bit longer than an hour. it consisted of laying on a table very still for a bit, having blood taken, having a very small bit of a radioactive isotope injected(the reason a doc has to actually perform the test), continuing to lay very still for an hour, and having blood drawn once more. this "works" b/c the isotope distributes itself evenly throughout the blood and thus the before & after blood draws & the concentration of the isotope in the after blood draw enables them to know how much blood total blood volume there is (along with some additional info re: specific components of the blood). numbers aside, essentially the higher the isotope concentration, the less blood there must have been for it to disperse in. the laying still is to allow natural circulation & thus even distribution of the isotope in the time that they have pre-determined is needed. confused yet? it makes sense but i'm not sure that my explanation does! feel free to ask for clarification.

the test was not problematic for me at all (and my body tends to flip out from tests, weird things being injected, etc.) i had an IV in so that's how they did the blood draws & injection but otherwise i wouldn't have known i was even having a test.

i know there is at least one other testing method out there deemed accurate by those "in the know" but also know that there are some others that aren't considered to be worth much, i.e. any type of plain blood work. obviously blood work can tell a lot, and certain things can tend to be higher or lower with higher or lower blood volumes, but a simple blood test cannot actually MEASURE one's blood volume.

there were lots of tests, treatment, etc. going on while i was at vandy but one thing i didn't ask & would now is how much the testing can be affected by hydration at a given time. better hydration can increase blood volume but i don't know to what degree the test is sensitive for this."

as far as testing goes, it's really not bad at all...

we're definitely keeping you busy with information overload, eh? don't feel like you have to read it all at once though...the links will still be here...

:-)melissa

[Evie]

Oh sounds interesting.! My viens are really thin so it usually takes people at least 3 times to get anything in (i get anxiety from fearing the pain and that makes the blood run slower i hear ... so i suppose its a vicious cycle).

Hmmm my drs didnt seem to want to do many tests. Like they said the tilt table usually takes months to get into and basically they know i have OI anyway. I could come back from tilt test negative and that would mean its possible i just had a good day, or i could come back positive and it wouldnt tell them anything new.

But the whole blood measuring sounds important. If i dont improve i suppose i will bug them about that sort of stuff. Yet hopefully i will improve and it wont be nessicary

thanks for being so paitient with me. There is so much information on this site im never sure whats relevant and whats not. It seems everyones situation is so different yet effects us in similar ways. Its quite interesting isnt it. This is making me want to become a dr! haha.

I was just speaking to my mum (she is a nurse) and she use to measure my pulse and she said it tends to be irratic at times and miss beats occasionally etc. Would that be a sign of the T in pots?.... sorry i have no idea how to spell it and cant find the word on the message history at the bottom of the screen lol. The nurses at hospital however always had trouble counting the end beat as it was really faint yet the first beat was quite strong (i forget technical name... distolic or something like that?)

[steph37822]

oops

[JaneEyre9]

Hi Evie,

This stuff makes me want to be a doctor too. Too bad my body laughs at things like 80 hour work weeks.

As for the erratic pulse, I have that too. Not sure if it's related to POTS, but it's a strange thing that i noticed. It's not technically the T in POTS (Tachycardia). Tachycardia, by definition, is a heart rate that exceeds 100 beats per minute. So in other words, a very fast heart rate.

When you say first beat and end beat, i assume you're talking about measuring blood pressure. And you're right, the first beat they listen for is the systolic beat and the second one is the diastolic beat. I've never been told that my diastolic beat was weak, but that doesn't mean it isn't as i usually have to be assertive and ask for my blood pressure in the first place.

I also had the blood volume test (that Melissa descibed) done recently. She's right... it's not bad at all even if you're afraid of needles. They just stick you once and that's it for the rest of the test. It's not uncomfortable and i was thrilled that i was able to lie down the whole time. I also had another test done after the blood volume test that measured the speed of my circulation. If you have overly rapid circulation, that can cause POTS symptoms as well. These tests, i believe, just narrow down what exactly is causing your symptoms. For instance, it was determined during my tests that I have very rapid circulation but not as much of a problem with venous pooling in my legs. This helps the dr. know that i need more beta blocker rather than stronger support hose. Anyhow...that's the scoop on testing. Not at all bad. I think the nicest medical test i've ever had besides an x-ray.

Kristen

PS- Steph-- i want what you're having!! Anything that would let me get into work at 8am-- sign me up! Very interesting about the Procrit. Definitely will keep that in mind.