Hi and Introducing myself

[Guest Stacey:-)]

Hi,

I am new to this forum but glad to be able to talk to others that have this same condition. I am 36 and was diagnosed with POTS in 1996. I am still mostly bedbound and homebound but have pretty good sprits. I am married to a wonderful guy and we live in Titusville, Fl.

Just thought I would intorduce myself and say hi!

Stacey :-)

Forgive nay tyopos I am a bad typist! ( see )

[ethansmom]

Hello and welcome to the POTS forum!! I also enjoy coming here to talk to other POTS patients. It's good to hear that you are keeping a positive attitude despite having this condition. I suppose you've had quite a bit of time to adjust to the lifestyle that comes along with POTS, since your diagnosis in 1996. I was just curious to know a little more about your situation, you mentioned that you are mostly bedbound and homebound- so I'm thinking you must have a more severe case of POTS. Are you currently taking medications? What are your main symptoms? How has this affected your life in other aspects? Have you gotten better at all since you were diagnosed? Not to be nosy, but I am always interested to know how others are coping with this condition.

I am fortunate enough to get around quite a bit, although it can be difficult at times. I am a full time mother and am trying to finish college via online courses, but am unable to work at this point, since my diagnosis in 2001.

It's nice meeting you, and I hope you come around often!!

[Guest Stacey:-)]

Hi!

Thanks for your response. Part of this post is a part of a letter I send to each new doctor that I go to that kind of sums up everything. My weight is better now and I can eat better though still have to force myself. I got sick about 2 months after my wedding though I think the spring before I was starting to get sick because I remember getting tired walking up stairs at school. I was going to college to get my degree in chemistry. I was ballet dancer and teacher and worked as a tutor. I remember the exact day I got sick, I was sitting in physics class and all of a sudden got very very dizzy. went to my next class felt worse, drove home and when I got there I fainted and have been in bed ever since 1995. I could expand on all the stupid doctors I have been to see but that would take months. Anyway here is a summary, probably enough but I will write more another time.

I am a 36-year-old female who has been incapacitated and virtually

bedridden since November of 1995. My illness began in 1995 about two weeks

after a viral infection and bronchitis. I first developed severe headaches

of several days duration over a period of a few weeks. I suddenly

developed orthostatic syncope shortly afterward and became virtually bedridden.

Five months later (April 1996) I developed gastrointestinal problems

that led to a weight loss from 140 to 84 pounds. I went to see many doctors,

including several neurologists and psychiatrists, a rheumatologist,

gastroenterologists, and cardiologists, who generally agreed with a

diagnosis of chronic fatigue syndrome. My first tilt table test at Jackson

Memorial Hospital in Miami in 1996 was abnormal (HR greater that 120). A

second TTT done in Orlando showed that my HR went to 165 and my BP down to

98 palp after a 30 minute test. Specialists at Mayo Clinic Jacksonville

diagnosed POTS after a third TTT. A small bowel manometry at Shands Hospital

in Gainesville showed gastrointestinal dysmotility. I have also had several

MRI studies of my head and neck.

After my weight loss I was placed on intravenous total parenteral

nutrition and regained some of the weight, although I still have trouble

eating enough to maintain it. (I now weigh 114 pounds.) My dizziness/near

syncope upon standing has not improved. No medications seem helpful in

relieving symptoms. (Antidepressants, Florinef, beta and calcium blocker, migraine meds such as Imatrix, and many others.) At this point I am on no medications to treat my condition except Darvocet as needed for the headache and body pain.

It may be noteworthy that I had a whiplash injury in 1991. Dr. Weingart at

Johns Hopkins examined my MRI and found no evidence of Chiari

malformation.

SELECTED CLINICAL STUDIES

* severely abnormal autonomic tilt table results (on three separate

temporally spaced tests): orthostatic hypotension, postural orthostatic

tachycardia, near syncope

* mitral valve prolapse (according to three out of four cardiologists who

examined me)

* gastroparesis/small bowel dysmotility (according to manometry study)

* positive PCR test for Mycoplasma fermentans

SYMPTOMS

* severe and worsening headaches of several days - a week duration that

begin at base of skull/back of neck and radiate down neck and shoulders

behind eye and over top of head; whole face and whole head hurt

* severe dizziness and near syncope, especially upon standing (gray or

black outs if I stand to long).

* shortness of breath when standing too long

* tachycardia, especially upon standing, with palpitations

* no appetite, with stomach pain and nausea, especially during and after

eating, led to loss of weight (severe at one point but stable now); also

constipation

* cognitive impairment (short term memory loss, difficulty concentrating,

difficulty finding words)

* blurred vision when trying to read or sew (an optometrist and an

ophthalmologist said they could not correct this with lenses)

* extreme fatigue and exercise intolerance

* body pains in muscles and joints, especially legs, sometimes chest and over ribs (left side)

* insomnia

* sometimes pain and pressure in ears (occasional tinnitus) and pressure

behind eyes

* low grade fevers

* body sensations such as tingling and itching

* aversion to cold; cold hands, feet, nose and ears; sweating and

shivering at same time

* irregular menstrual cycles (history of ovarian cysts)

* blood pooling in feet and hands (feet and legs turn purple)

SYMPTOMS WORSEN WITH:

* standing stationary

* fatigue and dizziness worsen with heat (hot baths/showers are very

exhausting)

* viral infections

* physical stress and exercise

So that is my story,

Thanks for asking

Stacey :-)

[ethansmom]

Thanks for sharing your story!! I can relate to a lot of your symptoms as well- my main problem being constant lightheadedness. I have never fainted but come pretty close on a regular basis- I just have to catch myself when I feel I've been standing too long and take a rest. I was bedridden for about 3 months prior to my diagnosis (I also went to the Mayo Clinic in Jacksonville to confirm diagnosis of POTS!!) but am currently under treatment by a doctor in the DC area, which is where I live. I am doing much better than I was 2 years ago, but also still struggling daily with lightheadedness, extreme fatigue, gastro problems, and other less severe but still bothersome symptoms. I am currently taking a beta blocker and Florinef, which only seem to be helping a little. I really need to find something that will help with the lack of blood to the brain which is causing the woozy feeling when I'm up walking around, but its hard to experiment with meds because I'm nursing a baby- so I am trying to hang in there for a few more months until I wean him. Have you ever taken Pro-Amatine (midodrine)? I've heard that this can be a big help for patients that experience fainting regularly. I took it when I was first diagnosed, and I was feeling fairly good at that time with the combination of medications I was on.

As far as being in bed, I'm sorry to hear that you have spent so much time there since 1995- but it sounds like you've managed to keep your spirits up , which is GREAT!! I'm sure you have been through the ringer with doctors, tests, etc ... I know how frustrating that can be!! I hope that someday you will be able to get the POTS under control enough so that you can enjoy life a bit more. I thought I would never get out of bed at first, but being the stubborn one that I am, I refused to accept this for myself- there are a lot of days when I probably should stay at home and rest, but I just feel like if I do then I am "giving in" to this illness. Do you ever feel this way as well? How have you come to terms with it? I am just curious . . . I have seen so many levels of illness since I found this board, I guess I fall somewhere in the middle, but I like to talk to others and find out what life is like for them on a daily basis- it really helps me not to feel so alone, when it seems everyone around me is so healthy and energetic, you know?! Take care, and I hope to see you around often!!

[SparkNik]

Stacey,

I am so sorry to hear what you have been going through. I have had problems with dysautonomia for over 12 yrs now but just last year got hit really bad. I could not work and became very isolated from feeling so sick. But now I am back at work and trying to do what I can without pushing it to far. Can I ask if you ever deal with panic or anxiety attacks?? I have had problems with that since I can remember. I was told that it is because my adrenaline is constantly flowing and puts me in the flight or fight mode. Also are you bedwritten because you faint alot? Do you need a full time caretaker? Sorry for all the questions but I am just curious at to what point you are at?? It really bothers me when I hear that people get to that point. I will say a prayer for you that you get stronger and will be able to come out of this. Good luck and stay strong. We can all fight through this if we stick with a positive attitude. Just know you have many friends that understand and are here for you..