mrach

I had this kind too- but I thought it was a herpes of some kind because it was itchy and I had a herpes before. Any one of you had herpes of whatever kind before this/ May be the immune system geyts so low with POTS that any existing herpes in the body just flares up

I HAD HORRIFIC NIGHTMARES WHEN MY POTS STARTED;THE MOMENT I STARTED TO HAVE MORE NORMAL DREAMS I KNEW I AM GETTINGBETTER. I THINK IT IS STRESS RELATED

How can I see them

I added 4 beautiful photos to the vacation section, of corina's summer trip to France. Enjoy!

corina, if I made any mistakes with the captions please tell me!

Katherine

Thank you very much for your kind words and explanations....

Dear Sisters and Brothers in misfortune,

I guess I find more help and answers with you than with the medical personnel I am communicating at the moment, so if I bother you with my ?s, please, excuse my ignorance.

My problem is why I am so anxious since these symptoms started it was like a overnight transformation from a very laid back and nonchalant girl I became a frightened chicken. Yes, My POTS started with 3hours of severe tachy, blushing, suffocating, feeling that I am dying and so on and with 5 doctors standing and looking helplessly at me, they just let me go through the whole think under "supervision". I am constantly lightheaded, weak in my legs and so on. My main problem is why I am so anxious to go out, to interact with people standing, to travel, even to go out of familiar environment ofmy misery for the last 9 months. Do you think it is because my brain does not have enough oxygen and that makes me anxious, or it is a part of the symptom, or I am developing generalized anxiety on top of everything, or may be I am going crazy. I feel like trapped, I want to live this life not be a prisoner of my own mind, yes,may be I will never be the same energetic, easy-going person I was but at least some sense of normalcy.

Please, any suggestions how to fight this are greatly appreciated

Maria

Hi Dionna,

I have the same problem, at first I started eating less frequently, eat more complex carbohydrates( meat does not make you fat) with every meal, eat dates, avocados, MOst important relax after and before eating lie down to help the parasympathetic system override the sympatheticand allow the intestines to absorb and digest better, eat more rye bread,. Stop eating milk too much Ca it also promotes weight loss9 I was eating akilo of wholesome milk before, it helped me when I stopped).

I had something similar not as bad when my symptoms first started though not as bad, I just tried to ignore and not border myself with...

I have autonomic dysfunction that is getting more progressive. Along with that is POTS. The last few weeks off and on I've had severe pain in my right thigh from mid-way from the knee to the hip. It is like hot pokers are stabbing me when I move the leg or touch it. There is also numbness involved. With rest and quiet for a few days it calms down. Today is extremely painful and I feel so alone. Has anyone else had this problem. I've e-mailed Vanderbilt but not heard back. Thanks for any help.

Cathy

Sorry, dear. Sometimes I have the feeling that the doctors in NOrth America have not taken the Hippocrates Oath, it is unbelievable. If you can not solve a problem, send me to someone who can, for GOd's sake...It is not as if you an accountant or something like that, you are a Doctor for Heaven's sake. This can never happen in the third world country I am coming from, because on the way out of the hospital people will just shoot him...

My advice: Pray for a good doctor.

Wish you better lday tomorrow

g

Hi everyone, I'm having a rough day and just need to vent for a minute...

I spent the past 4 days trying to get through my doctor's secretary/assistant (aka bulldog); I saw my gp 2 weeks ago for a double ear infection, sinus infection and bronchitis. Because of severe medication allergies, I'm limited on meds I'm allowed to take, but we had to go for steroids + an antibioitic I'm allergic to (zithromax) for 3 days, along with benedryl to try to knock it out.

Well, I called first thing on Friday last week to say the infection was reasserting itself in at least on ear. No one called back. I called this morning to follow up and the assistant tells me to call an ENT. He can't see me until 3 weeks from now and I have an infection NOW. I call back. The assistant gives me another referral--to a doc who GAVE UP on me 4 years ago because of my medication allergies. At this point, the assistant sounded annoyed with me and said "I'll have to call you back"... yeah. that was 2pm. No one's calling me back tonight, and now my ear feels like I have a spike in my head. Heck, it's not like I'm there all the time! The last time I saw her before this infection was in March... and before that, in Dec for a partial lung collapse.

So, I called my allergist, who has always been my saviour--but this time he was furious with my gp and told me I need to tell her that she needs to be held accountable. She started my treatment 2 weeks ago, and now I need follow up.

I'm so frustrated. Meanwhile, my other ear is hurting now too--and to make matters worse, I started bawling because I'm so overtired and sick and feel too tired yell and scream about how inappropriate it is to just dump me in the middle of an obvious problem.

Okay. Tomorrow I need to find a new doctor. Please send me whatever karma thoughts that will send a good, caring doctor my way who will stick with me through thick and thin and not just dump me when I get sick. I'm trying to get over my pity party and my worrying b/c in the past infections have gotten away from me and I've ended up with a pneumonia, in the hospital. Ugh.

tomorrow's a new day, thank goodness!! Thanks for letting me vent Nina

Thank you, for all theanswers, it seems my impression was that we have to drink Gatorade as an alternative for salty water in order to get the BP up, I did not know that there are other reqirements as well...

As a not yet Dx POTs, I was really perplexed to see that the doctors recommend Gatorade ,when it is full of sugar and artificial dyes, are we not supposed to avoid that. Do you know of any healthier alternative to Gatorade?

Please, share your tips for some quality of life when you are unable to go out ....

Thank you, everybody for your answers

HI, since you are functioning so wel, can you , please, then describe your symptoms and tell us if you are on treatment or not

Thank you, girls

A friend of mine had SVT and whenever she had an attack of tachycardia she would be on the loo for hours- constantly weeing.

The autonomic nerves connect with the bladder and bowels, and people often lose continence when they faint. I guess it could be related? I often get a terrible urge to go to th bathroom just before I faint, tho have only on two or 3 occasions been unable to control my bladder.

Hope you get answers soon. You're not alone!

Hi, everybody,

Going through your posts I can not help but admire your strenght and bravery, I can not even believe that 9 months ago I was completely unware of POTS and its tragedy, I guess my main concern was how to look thin and sporty ha-ha-ha..What I was thinking today while reading the multiple side effects of the meds you are taking is :

- is thetre actually some or any benefit of taking the medications, my impression is that the treatment of POTS is still in tha dark area of experimenting

- how are POTS patients treated in Asia, or third world countries or even ex-Soviet Union and is POTS even existing there in such a horrible form

- I have a background in neuroscience and I can not help but think that may be there is some kind of immune inflammation of thebrain on some level caused by may be environmental or some other kind of toxin Therefore iot seems important to establish if there is any connection between this syndrome and geographical location. Is this syndrome a "privilige" to the highly developed countries and why?

Any info onthis will be greatly appreciayted ad may be beneficial for us all

Sorry, to go into this topic guys but still have not found the right doctor.Do you have problems with that because I noticed somerthing is not quite right with me too little and almost if there is no contraction there feels if I am not in a hurry,Iwill have an accident. I am still waiting for the TTT at the end of September, so untill then the doctor said he is not sure how to explain this ....

thank you, Ariella. found the same thig the more I walk the better, otherwise it is a miserable life....I want to be able to walk like before always on the move and enjoying total freedom without even understanding it....

Happened just a few days ago. Got real woozy, and had to sit down on the sidewalk. Rather sit down than fall down. Embarassing? yes, but if I didn't leave my house I would lose whatever is left of my sanity, so for me it's totally worth the risk.

I find that the more I walk, the more I am able to walk, and get deconditioned really quickly. So as hard as it may be on some days, I force myself out (even in bad weather), so I don't get "out of shape"

You may want to carry water. And a cell phone.

Ariella

Hi, I would like to go out more,but I am scared of fainting on the street, plese, help...

Hi, Ernie, nice to see a fellow Canadian on the forum. I live in Toronto and it is very hard to find a specialist in POTS, would you please, share the name of this so -called doctor so I never even approach him...In Montreal there are a few specialist may be you should look there instead of tolerating this abuse and also, report to the College of Physicians and surgeons...We are all human beings and we have to be treated with trespect

Hugs Maria

What do you tell your doctor when he tells you that you just have to control yourself not to faint? My wanted me to walk 5 flights of stairs after having 4 vials of blood taken and I told him that I would faint. He told me "just control yourself" "You know what to do not to faint". I told him: I am not God"! I was so shocked. I have been his patient for almost 2 years now and he has seen me faint at least 3 times and he still believes that I have control over this stuff.

He told me that if I fainted during the test he would abort the test and send me to the ER and not care for me. So I managed to avoid fainting by lying down when my ears started to buzz and he aborted the test becaused he was upset at me for lying down. I had to argue with him that I did everything he told me but I had to lie down not to faint and I want the test done so the nurse took the final vial. I was so discouraged that this doctor puts me in a loose loose situation.

Do you have any answer for people who think that we faint for the fun of it or that we can just stop a faint whenever we want it?

Thanks for your support

I hope you fel better soon, always better to request MRI. I even have reactions to simple hair dyes I get extremely tachycardic and fainty

I just had a CT of my abdominal (bladder) and I finished about an 2 hrs ago and my heart is still really crazy. When they first injected it I got the hot feeling and then a sensation that made my chest have alot of pressure..........felt like I couldn't breathe. Now just sitting my hr is 120's and I'm all shaky. My usual sitting hr is 60-70 (betablocker).

So anyways do any of you have crazy side effects to the contract they inject for CT scans?

Dayna

I would like to ask the people on this forum what do you do while walking on the street and feeling very POTSy

Thank you, Magee. I asked because very often when I read the profiles of the people in the forum they have it listed as one of their Dxs, but you are the only one who responded...Iwill let you now as soon as Ifind out

quote name='maggee' date='Aug 15 2006, 07:12 PM' post='61931']

hi!

i do have one..dx'ed on mri jan. 2006.

do not know yet==if it is related to pots / dsyautonomia symtoms i've had for years......as do not get to see pots specialist til feb. 2007 [dr. grubb in toledo,ohio].

rechecking adenoma in december....to see if it is bigger.

sometimes we have...and have had these for years...and they remain unchanged..so they tell me.

they do not want to do anything for them......unless necessary clinically.

i am anxious to know if any relation to dysautonomia===believe me!!

please let me know if you find out the answer before i do!!!!!!

i will post, if and when i get the answer.

best of luck!!

(((((hugs)))))

Maggee

Hi e.b., I had my MRi yesterday and they supect pituitary microadenoma ( my hormones are fine).My quetion is are there other people with microadenomas and POTs may be there is a connection

If it is not too late :

1) Solgar( Helated natural iron) take away from Ca( including, milk, yogirt, cheese) 4 times a day (does not constipate)

2) Floravit ( no yaest) /Floradix with yeast liquid Fe produced in Canada it helps great with fatige as well

Got my latest blood work back and I am very anemic again. I hate taking iron pills, they upset my stomach and I have IBS so that's not good if you know what I mean. Asked and Doc said to give the liquid iron a try. Husband came home from drug store with a huge bottle. I tried one tsp of it and almost chocked!!!!It tasted like I licked a dirty rusty train track or a puddle of rusty stuff. It took awhile to get the taste out of my mouth. I had to work up nerve today and even put it in soda and it still was nasty and upset my stomach. Any brand anyone has tried out there that is easier on you? I have been eating cream of wheat in the morning it's supposed to have 90% of daily allow in it. I hate to get the upset stomach cuz then I get dehydrated and it's downhill from there. Then if I don't take the iron I get anemic and feel weak. Its like you can't win. Any ideas???

Kim

Thank you very much.

quote name='mrach' date='Jul 26 2006, 01:04 PM' post='60038']

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.