mrach

Good LUck!

I am so very excited, I am pregnant. My husband and I got pregnant on his R&R I am five weeks today and have a long road ahead... This will be my second child and I am more comfertable because matt will be there with me for this one. Where my son I was a single mother young nieave and very seared. At the same time nervous because of this problem. I think I can do this though... I may be emotional but I will stand strong and listen to my doctors

I just wanted to share this with my new found family ....

I feel for you, may be u should ask your doctor for Beta Histein ( or Serk in UK) and see what he thinks

OMG!! folks i am going to go insane here soon if the unrelenting feeling that i am moving does not stop...the walls are moving.. and look like they are shaking.. and the floor OMG!! i made the mistake of looking down at the floor (felt like the floor was going to disappear under my feet..SO NOT cool!) and the floor looks like it was swirling around beneath my feet..and right before i had woekn rfom a nap.. and the cat was sleeping on me.. and i woke up and everything looked really werid.. and everything was green!! i seriously my vision was so wacked out that everything looked green.. even the kitty!! I actually said peaches (that is the cat) what did you get into? and why are you all green.. and why is my blanket all green too?? Seriuosly is that a normal thing with vertigo?? i am not crazy.. but at that moment i thought i was startch raving mad! a cat who was green.. OMG! good by germit the frog hello green 4 legged meow meow~!

i went to the doc on monday and i had a bad ear infection.. and i've been on antibiotics since monday... and today i woke up and holy crap i feel like i am trapped in the middle of that tilt a whirl ride (like at a carvival or something) and i cant get off of it.. i'm soo unsteady on my feet.. and unbalanced that i've had to use my gosh darn whelchair all the time..

any pointers on how to get "my world" (lol) to stop spinning.. b/c if i puke on more time or fall back wards and faint on more time to day or this week I' m seriously going to scream... and pull my hair out...and the chills and shaking i dont know what is worse.. being freezing cold in 90 degree weather and buried under about7 heavy winter blankets and wearing pjs with the ac off.. or feeling like i'm trapped in a constant spinn cycle..

HELP!!

Congratulations and I wish you all the best in your career

uote name='Lulu' date='Aug 10 2006, 02:17 PM' post='61348']

Just checked & final grades were posted <drum roll>

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I made it!!

I can't believe I'm *officially* a senior in nursing school now! Just 3 quarters left!! I'm overwhelmed to think I made it this far--some of you know I had some REAL UPS & DOWNS getting here!

I'm stunned in considering I might actually be able to succeed in doing this? WOW! I can't wait to be a "real" nurse!

Just wanted to share my good news! It can be done!!

The best part is I have 6 glorious weeks off!! Hooray!!

Thanks for letting me share I'm so happy!

Did you have your adrenal glands check you may have an adrenal insufficiancy that is causing you low electrolytes

Doc A. said at some point I should have testing to see if I have low blood volume.

Now that I've moved and no longer see Doc A. on a regular basis, I'm slowly bringing my new doc up to speed on things and at the same time, only telling him what he needs to help me and not going to him with every little thing like I did Doc A. And if little things are bothering me, I either call Doc A., or save up several for when I go back to the new doc. He's just an internal med doc at the base hospital, not anything relating to Dysautonomia and hadn't heard of it before. But he's great and really willing to learn and try to help me with it. He's also great about saying when he's in over his head and sending me to a specialist or someone else he thinks might be able to help. So I'm pretty lucky.

The last appoinment was more of a check-up and to get official permission to get off the new med for something else I was taking that was lowering my blood pressure too much. Once that was taken care of I asked about getting tested for low blood volume. I already have hypokalemia--low potassium, which I'm on potassium suppliments for.

So he said since my electrolytes are already out of wack, extra low most of the time, it probably wouldn't be able to tell us much and would come back negative because my suppliments would put the level back up in normal range. And it had to be low for a positive test. All it was was a short blood test. They only drew one vial and I got the results a few days later saying that it was negative. When I called my doc back he said that I probably had it but he wouldn't take me off the suppliments just to get a positive result. Which I agree with unless its absolutely necessary. He was on vacation for a month and the doc handling his patients while he was gone got my refil prescription messed up and only had me on 8 MEQ's twice a day instead of 10 MEQ's twice a day. Believe it or not, but not getting those 4 MEQ's a day has really made me tired and have no energy.

There's bound to be some other test and from what some of y'all are posting it sounds like there IS another test. Can someone tell me what its called so I can tell my doc or describe it so I can tell my doc. If you describe it, I'll probably just print what y'all write and let him read it. Or send me to a link that I can either print or send him too. I'm not having much luck searching with google.

Thanks,

UnicornIsis

About insomnia get relaxation tapes ( I like THe LInden MEthod ) , Meditate,meditate, meditate, always eat carbs complex plus protein especially chicken or turkey around 6-7 p.m. helps the thryptophan get through the brain barrier and it helps you to relax , drink a cup of Vallerian tea or Chamomile tea at bed time, pray. I was not able to sleep for more than 3-4 hours before. You can also try one only session in hypnosis for relaxation and ask the hypnotist to record it on a CD and listen to it. Do notr neeedto pay for more.

Good luck

something

hey!

sorry you?re having such a tough time

i don?t have much to say, as I?m don?t know much about POTS(i?ve just had it for a few months)

2) have you tried any diets (at the moment I am eating meat after being vegetarian for 10 years)

the best you can do is drink lots of water, and eat lots of salt(be careful though)

3) have you tried any alternative methods: herbs

i drink herbal teas... it also helps you sleep better

5) did you take any medication prior your diagnosis

yes... i was taking an antipsychotic called geodon... how about you? what were you taking?

6) my tolerance for activity is very low except for half an hour walking in the evening, can you tell me any exercises I can do safely

i think you can do lots of things, like swimming

7)I used to be extremely active and productive person, now being able to just sit is killing me

the same here....

Sorry, for the English language I am new to the language

don?t worry about that... my english is also far from being perfect, but I?m sure everybody understands what we mean

take care...

P.S.- just outta curiosity:(you don?t have to answer if you don?t want to), where are you from?

Thank you for answering. Are you still a vegetarian?

Hi, Mrach!

i would agree with dizzy dame....get your levels checked. and maybe, too, in the meantime, make sure you're staying well hydrated. that can help with almost any condition, especially POTS.

by the way, i've been vegetarian for almost 20 years, and my biggest dysautonomia problems started after a virus *and* a switch to a vegan diet around the same time. the switch in nutrients did not help my body fight the virus and so for me, the virus was enough to kick my dysautonomia into full gear, though i'd had minor varying symptoms for *years.*

so maybe your new diet contributed in some indirect way?? i hope you get some answers and feel better soon! and welcome to the forum!!

peace,

lulu

Hi, I am a suspected POTS, not yet diagnoseed, therefore I am walking like a zombie for the last 9 months, no medication nothing, and the earlest TTT they scheduled for me is for the 28 of September, probably I am the hyreadrenergic type as I am extremely anxious when upright ( walking is better than just standing) and the symptoms are better in tha late afternoon, actually I became afraid to walk outside because I feel ++ dizzy just losing balance and walking like a drunk ( no vertigo though), shockingly lightheaded (as if my head is half-empty) I have lost around 12 kg, and my legs are very shaky and weak. What bothers me most is the feeeling that I no longer have a brain...I am very afraid to travel for the same reason because I feel I am going to pass out any moment.

This all idiotic thing statrted after I was on raw foods diet for 4 months and I was feeling perfectly healthy, was full of energy and looked great, when all of a sudden I had a feeling that I am going to drop and it started from there...

My questions are:

1) is that normal for POTS

2) have you tried any diets (at the moment I am eating meat after being vegetarian for 10 years)

3) have you tried any alternative methods: herbs

4) what kind of vitamins are you taking

5) did you take any medication prior your diagnosis

6) my tolerance for activity is very low except for half an hour walking in the evening, can you tell me any exercises I can do safely

7)I used to be extremely active and productive person, now being able to just sit is killing me

Sorry, for the English language I am new to the language

Thank you very much

I can remember when I first started feeling exhausted and I had double vision at work one day just before the onset of florid POTS 4 1/2 years ago. I don't think this is so typical with the onset of POTS for many peraons. Less than a week later I was bedridden with what would take almost 2 years to diagnose POTS.

I was wondering if anyone else has had this symptom? My POTS is believed to have had a viral onset but it was never proven. Hope everyone is staying cool today. Martha

Did you have a MRI to exclude MS ( double visoion is typical for MS

thank you honey, can you tell me how did you fly back to USA when you were so sick.I have on top of dizziness, acute attack of frightening severe dizziness as if the world tilts sideways , blurring of vision,dry throat and horrific feeling of doom and tachycardia. nobody had a clue for the past 8 months, on monday i saw a neurologist (finally after 8 months of asking for it, i live in Canada....0 I am extremely anxious but I am afraid to take anything for the anxiety just herbs and relaxation meditation....quote name='Dizzy Dame' date='Jul 26 2006, 11:19 AM' post='60035']

Heya,

*deep breath* it's a long story.

I first started showing POTS symptoms last summer when I was living in Hawaii. They mainfested as dizziness, fatigue, and chest pain, and palpitations but the dizziness was by far the worst symptom. I went to several doctors, but they couldn't find anything wrong with me other than in increased heart-beat on standing, so they told me I had an anxiety disorder and prescribed xanax. Well, the xanax made things much worse, and I ended up fainting as a result of it. I ended up in the hospital on the cardiac ward because after fainting an ambulance was called and the EMT's saw my blood-pressure was 60/40 and I couldn't speak or hear. After getting IV fluids and spending several days in the hospital, my BP normalized a bit when I was laying down, but as soon as I stood up, it would go back to the 80's/50's and my heart rate would go from the low 60's to the 140's-170's. My doctors knew something was horribly wrong, but had no idea how to help me, so I was sent home and told to stay in bed.

I was bedridden for about 6 months, and eventually had to move back to the east coast beacuse the doctors in Hawaii had given up on me. In January I went to Vanderbilt and was admitted for a 2-week medication trial by Dr. Biaggioni. While I was there I was officially diagnosed with POTS and Neurally Mediated Hypotension, and was put on Midodrine.

Since then, the midodrine really helped some of my symptoms and I was able to get out of bed, and even go to school part-time last semester. However, my symptoms have worsened over this past summer, and now we're suspecting that I have Lyme disease as a cause of my POTS and other neurological symptoms.

My POTS/NMH symptoms are listed below:

1. Severe increase in heart-rate when I stand >40 bpm

2. Chest pain, dizziness and nausea upon standing

3. Decrease in systolic and diastolic BP when standing (unmedicated)

4. Heat intolerance

5. Intolerance to caffiene and alchohol

6. Exercise intolerance

I have other symptoms that some POTS patients have that may also be attributed to Lyme:

1. Sensitivity to sound, light, and vibration

2. Joint pain

3. Numbness/burning/tingling in hands and feet

4. Sleep disturbances (I wake up in the night with what feels like adrenaline surges that cause my heart to race and my blood-pressure to spike)

5. Visual distrubances ranging from flashing lights, to "floaters"

My treatments are as follows, some are doctor-prescribed/suggested, others are things I've learned from trial-and-error:

1. Not to stand for more than a few mintues: this means I use a wheelchair if I have to walk long distances, I use a stool in the kitchen for when I cook or do dishes, and a stool in the shower.

2. Gatorade 3-4 liters a day.

3. Tons of salt on all my food.

4. Waist-high compression hose in the spring, winter and fall, knee-high in the summer (beacuse they're so hot)

5. Eating 4-6 small meals a day, not too much fatty food or sugar

6. B-6, B-12 and folic acid seem to help me

That's about it. I really hope you find a doctor that can give you some answers! That will be crucial to your recover.

Many thanks to all of you for your answers. Can you tell me what are your symptoms or how did they start because the doctors just have a suspision but they have not confirmed POTS yet and I am suffering for the last 8 months since all this started. Tell me about your daily life as well, please. Thank you

i fly a lot. i usually just hurt on take off, turbulance, and landing. up the salt and fluids. be sure to let your flight attendants know. i have fainted on flights before- i have also been denied flights due to too much fainting. good luck.

dionna

Thank you, can you tell me more about your diet and the vitamins you are taking. How was your diagnosis confirmed

I need to fly overseas for 8 hrs . i have just been diagnosed with POTS and i would like to know what the dangers of long flights are, and if there are any precautions that need to be taken.