Hello Everyone. I'm A New Here & I Need Help/advice

[toni]

Hello Everyone,

My name is toni and I'm a 26 year old female from Saskatchewan, Canada.

4 weeks ago my whole life changed for the worst.

I was at work when I had this "attack" - my hands & feet went freezing cold, i felt like I couldn't breathe, and my heart was going crazy.

I went to the ER and they admitted me overnight releasing me the next day with the simple diagnosis of sinus tachycardia possibly caused by the greens plus supplement i drink.

The cardiologist was a totally jerk not answering any questions and wanting to rush me out.

I thought okay, maybe this is a one time thing. i thought wrong! since then I have never felt the same again.

these are the following symptoms that I have everyday since then:

- chest pain so bad that it feels like i'm being stabbed in the heart with a knife (it gets so bad that i've gone to the ER 5 times, calling the ambulance once)

- laboured breathing (sometimes i actually have to think about breathing, it doesn't happen automatically)

-sinus tachycardia (the lowest my heart has gone done since that day is 92 resting)

-loss of appetite

-shakiness

-numbness (sometimes my arms, my feet, my head)

-head twitching (twitching of arms, legs)

-when i'm sleeping i feel like i stop breathing.

-white floaters in my eye

-my heart pounds so loud that it feels like its right beside my ear

-sometimes feels like my heart is in my back when i'm on the couch watching tv

-i have this constant acid in my throat! acid reflux? it's awful.

-upon waking up in the morning my heart goes crazy fast and i'm not even out of bed yet!

like i said above i've been to the ER 5 times and they just run the same 3 tests:

-chest xray

-ecg

-blood work

and they all come out okay except the ecg shows sinus tachycardia.

my family doctor put me back on effexor 75mg to help me cope. i kinda think that he thinks its all in my head!

i emailed all the canadian doctors listed on this website and explained my situation, the only one that emailed back was Dr. Carlos Morillo who concentrates on pots syndrome - he said that he would like to see me this year, all i need is a referral from my family doctor.

should i ask my family doctor to refer me to Dr. Morillo? the only thing is that i don't think i have pots because when i stand up, i'm not dizzy and my blood pressure doesn't drop. i do think that i have a dysutonomia of some kind but i don't think pots..is there a point getting a referral to Dr. Morillo then? he is a 4 hour plane ride from me. i'm at a total complete loss. i can't live like this! i'm at the brink of losing my job, my husband, my family.

brief history of me:

-saline implants 6 years ago

-cfs/fibromylgia after implants

-placed on effexor for 5 years - doctor took me off last august.

i understand that you can't tell me what i have, but maybe does it sound like something: ie. mvp syndrome,

look forward to hearing from you,

toni

[Ernie]

Hi,

Welcome aboard.

I think it is worth your while to see a specialist like Dr Morillo.

The basic test is TTT.

[Katja]

your blood pressure does not have to drop when you stand - some doctors actually feel that if your blood pressure drops, then you don't have POTS. The main criteria are orthostatic symptoms, and an increase in heart rate when standing up (over 120bpm, or an increase of at least 30bpm).

[Broken_Shell]

Hello Toni & Welcome!

I am sorry that you are having such a hard time. I hope that you will find some answers and support by looking through the forum archives about some of your symptoms. It sounds like you definately could have dysautonomia, but you will want to rule out all other possible causes too. Dysautonomia is very variable and each person can have unique and changing symptoms. You don't have to have a drop in blood pressure when you stand - that is a common misconception. I would recommend that you try and send all of your records and a lengthy letter to Dr. Morillo and explain to him that you are interested in a clinic visit, but because the travel would be difficult for you, you would apprciate his feedback as to whether or not he has successfully treated patients with the symptoms and test results you are experiencing.

Best wishes, Broken_Shell

[all4family]

Hi, and welcome, although I am sorry for what you have been through that brought you here. Your story sounds so familiar to me. Although it took me 5 years to get diagnosed and by that time I had been to my ER 66 times, and they were sure to count and let me know! I really get the thing with the feeling of your heart laying in your back. I get the feeling of all my blood going to the lower most part of my body, and severe numbness. Also do you mean that you don't get dizzy when you stand up? Or do you mean you don't feel generally worse after standing for a while, especially in one place? If a doctor knows about POTS, he is going to know about dysautonomia also I would think. I would think it would be worth it to see him if you can. It sure will get you a lot farther then going to the ER where there best trick sometimes is counting the number of times you have come! I would think with the cfs/fibromyalgia, and the saline implants that you really should look into it. My dysautonomia is autoimmune dysautonomia. ( I just found this out. ) and there is a connection with cfs/fibromyalgia and dysautonomia. Spend some time reading on this site, and I am sure you will find many things that just ring a bell! I hope you get some answers soon. I know how it feels to feel like you are going to lose everything. My kids were still pretty young when I first got sick, and I never knew what was wrong. Learn all you can, and don't let anyone tell you you don't know what you are talking about. It's your body. You have been in it your whole life. If I had been dignosed the right way in the beginning I believe I would have done a lot better! Take care!

Hugs

Suzy

[Lenna]

Have you been evaluated for pheochromocytoma? I think you would need to see an endocrinologist. http://www.wrongdiagnosis.com/p/pheochromo...ma/symptoms.htm

[masumeh]

I would say you need to take whatever route you can to see a specialist soon. Chronic illness is very disruptive to one's life...and you mentioned having a job. I think you should see a specialist, maybe not necessarily the one you mentioned, since he's far from you. But see someone, before whatever you have takes its toll. Many ppl here have lost jobs due to POTS or cfs. ER does nothing bc they are not suppose to be the ones dealing with chronic conditions; they are emergency personnel. You need someone who can follow-up and dig a bit deeper. Someone familiar with POTS wouldn't hurt.

Take care of yourself.

[erikainorlando]

I am new here as well but you are singing my sonng. I just posted and please feel free to read my post. I seem to have so many of your symptoms and have been diagnosed with POTS 3 weeks ago after 6 months of being really sick.

I know about feeling like you are going to loose everything. I feel so bad for my kids, boyfriend, and anyone who loves me. They are so frustrated as well.

I have finally applied for disability ... I had been workng so hard to get a promotion but now I can't even work 8 hours.

This has been very difficult. I am soo glad there are websites like this.

You are not alone.

Erika

[ajw4790]

Hi!

Welcome! Hope that you find a good specialist soon to give you more answers!

[toni]

Hello Everyone,

I just want to start by thanking you all for welcoming me and for your quick replies! I also want to thank you all for your all of your advice- it has been extremely helpful.

I've decided to ask my family doctor to refer me to Dr. Morrillo. i'm very nervous because i have a feeling my family doc won't go for it!

I have a doctor's appointment with my family doctor on thursday so i'll let you all know how it goes - wether or not i'm successful.

If my family doc does refer me to Dr. Morrillo i might not be able to get in to see him for a year or so, so i'm going to have to learn how to cope until then!

My family doctor ran some hormonal/adrenal tests and i will be getting the results this thursday as well - i'll let you know what the results are. i'm interested in seeing if everything is normal or not!

i have a quick question:

have you guys heard of dysautonomia being caused by long-term ssri use?

i was on effexor for 5/6 years.

also my doc put me back on effexor to help cope with these dysautonomia symptoms and i thinking it might be helping lessen the severity of the symptoms?

can this happen?

is it possible that effexor could have caused my dysautonomia and that when i go back on it, it helps a little?

weird! i hope i'm not confusing you too much!!

i'm sooo happy that i found this website!! i don't feel soo alone anymore!! it gives me hope to speak to people that can relate.

tons of hugs

toni

xxxx

[Guest tearose]

I'm a bit wiped out to write right now but just wanted to welcome you!

I am sure you will find many good friends and helpful information here.

best regards,

tearose

[masumeh]

some drugs can induce POTS like symptoms, but they plainly warn so in their side-effects pamphlet. Example, I saw a Cymbalta (anti-anxiety) commercial that said, "May cause dizziness upon standing." I never heard of SSRIs causing POTS, however. In fact, Dinet lists SSRIs as a possible treatment route. See "What Helps" section for more details.