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Courtney812

Please Help Shed Some Light... Please!

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So lets start at the beginning but keep this as short as possible!

Since I can remember I've had issues exercising but lead a normal life. But things changed.

After the birth of my first child I had a very fast heart rate of 187 and this tachy lasted almost 2 months but I got fully better.

After my second daughter I was hospitalized for 3wks with brady and tachy. As low was 32bpm and as high as 180+. I had flushing, temp issues, gi problems, high and low blood pressures. However without meds I slowly got better again.. took about 7-8 months.

Then I went into a sort of remission for a year with mild symptoms around my period. And one or two day crashes. But I traveled, ran and felt good.

Well... a week ago I fell into the biggest crash since her birth. Flushing, low heart rate, high heart rates, blood pressures everywhere, flushing, headaches, dizziness etc.

I am trying the zyrtec zantac combo and it does help relieve panic feeling and help me up.

I sometimes feel better if I keep moving... and sitting and laying I feel worse. But standing I do get dizziness and fatigue.

Other day hr was 50s sitting and 114 standing so I def. Meet hr for pots.

But can this ever get better and go away for someone like me.

I dont think I have eds because im only flexible in like one hand lol I dont have skin problems, bruising issues or anything like that.

How in the world can I make this go.away for.good (billion dollar question isnt it.)

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Oh I am on cpap therapy for mild sleep apnea.

And I would assume I wont get.much help with meds because my heart rate and blood pressures are everywhere.

My poor daughter who is almost 4 has a couple problem I hope resolve with time. She has geographic tongue which she got from daddy

She has very mild CVS twice a year. And her elbow popped out 3x as a baby but hasnt in 2yrs. We were.told its common in children.

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Were you evaluated by cardiology with any of your episodes - especially while in the hospital? - this may not be related to dysautonomia at all - you may have a heart condition - a conduction disorder. There is a syndrome called "tachy/brady" - where the heart rate fluctuates wildly from very low to very high - (also called sick sinus syndrome) - I would be sure and get evaluated fully by a cardiologist before making any conclusions about what you have or don't have....

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Well I had the million dollar work up while hospitalized.

They mentioned a pacemaker but the EP thought id grow out of this in a few years he said...

The neuro seen a white spot on my brain but said its most likely nothing

Ive had about 4 echos... because at first I had a leak in my aortic and pulumic valves... one mild one moderate. However over time they are both now trace.

I have a lot of symptoms of dysautonomia though like flushing, temperature regulation issues etc.

Im 24 and this all started when I was 22 with a one year remission.

Atm. My laying blood pressure is 107/56 pulse 67

Sitting 114/71 pulse 93

Standing 104/68 pulse 119

So my pulse is positive for pots.

I also have a killer headache right now. And now I have a new cardiologist and im seeing him again tomorrow and ill be requesting another Ttt, echo and 24hr monitor

My last TTT I was 43bpm laying and 160 when tilted up with slight fall in blood pressure.

Right now im dizzy even in bed because my pressure is lowish.

I dont understand why it went away with no treatments and now its back full force.

This isnt like PAF right??

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If the zantac/zyrtec drug regimen which is a standard mast cell activation syndrome treatment gives you partial relief, are you pursuing getting a proper mcas evaluation from an mcas expert? Mcas could explain the symptoms you are having and is often found as a cause or comorbid illness of dysautonomia. I can't say what you have but it seems worth looking deeper into this if the treatment gives positive results. A proper diagnosis with an mcas expert may allow them to tweak your treatment plan and get you better results.

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Yea zyrtec and zantac are really helping..

For one clears my sinuses. And I have alil more energy, less brain fog.

Whats comorbid? Is mcad bad?

Why would I get better and back to normal for a year with no treatments then bam a flare for over a week now...

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Comorbid means "occurs with" or "at the same time as" regarding to different illnesses. Mcad isn't bad in that it won't kill you, but it can make you pretty sick and can cause the symptoms you describe. A severe episode of mcad could cause anaphylaxis which is a severe and potentially life threatening allergic reaction. Having mcad doesn't mean you will have anaphylaxis, so don't panic. But managing mcad could greatly improve your quality of life. There are a couple of prescription drugs that are used for it that may help. But you obviously need a diagnosis and a doc that's familiar with it to get you on the right treatment plan for you.

As for why you feel better and then worse again....that is the million dollar question. I'm not sure anyone has that answer. There could be many factors like weather, stress levels, activity levels that contribute but it also seems to be the nature of POTS and mcad too.

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What is interesting to me is how the bad times seem to surround major hormonal fluctuations as your body is obviously changing dramatically after a birth. Do you have a neurologist who is looking for the cause or a "Pots doc" whom specializes in pots? Although it is an arduous task, trying to get to the cause (as most of us are trying to do) is a good idea in my opinion as I feel if we can fix the underlying root of the problem, then hopefully the Dysautonomia roller coaster ride will slow down. Prayers.

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I really dont have anyone trying to figure out the cause.

After the baby I was told the major fluid shift and hormone dump caused it and with time it would get better... well that was logical and with time it got better, for no reason other than time.. I was so happy to regain my life...but now im 12 days into a flare that happen for no reason :-(

I dont understand... im devastated, confused and scared. Im terrified of the possibility of a progressive illness... I have a 2 and 4yr old and I cant watch them. My husband has taken less hours, my MIL is helping watch the kids.

Im scared :-( I.just want this to go away.

Tomorrow is my pcp appointment.

Requesting hormone panel

24hr urine

8am cortisol

Blood work for like everything.

Please let it be something easily cured. I want to be apart of my kids lifes... be there with my husband.

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OP everyone who's given advise here so far seems more knowledgeable on these particular issues than me,but if none of these suggestions lead to a firm diagnosis,here's one more avenue you could maybe investigate....rather than leaving a very long post i'll just link to a thread I started a few weeks ago where I detail the tests that lead to my recent diagnosis(after4.5 years of searching!)

http://forums.dinet.org/index.php?/topic/25884-new-diagnosisfinally-an-explanation/

I begin treatment in a few weeks and will be keeping that thread updated.

Good luck and best wishes ,remember no matter how many wrong answers you've had you only need to get one right answer.

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Mike that's very interesting... I was in a rollover car accident in 2006 (fatigue started)

In 2008 a car pulled out in front of me and another bad accident.

I have a bulging disc in my lower spine and my neck the vertebrae are narrowing... im 24. Can these things be fixed?

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Maybe I had very mild dysautonomia and the first pregnancy brought it out...but by the second pregnancy my body said ***** For lack of better words.

If you have Facebook id be interested in talking further, feel free to pm me, I could give you my facebook page

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Hey Courtney,

I haven't used FB in ages,someone else wanted more info on this also,so I can forward you the PM I sent

,get back to me if you want anymore info, I check DINET every few days.

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"My cardiologist gave me 25mg zoloft... I really dont want to take it"

Courtney--a low dose SSRI really helped me with my postpartum POTS symptoms. Studies have suggested low dose SSRI is effective in about 50% of POTS cases from what I remember reading. Not saying you should or should not take it, but perhaps discuss your concerns with your cardiologist if you have concerns.

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Just a side note or two...my pots doc said when estrogen drops, we don't hold on to fluids like we normally do which is why he said alot of the gals feel worse during that time o the month.

Have the doctors told you to drink tons of liquids or salt load or any of the "normal" Pots type home things to do?

One last thought....I have had quite a few moments where I am thinking..."oh oh, I'm dying". But, whalaaa! I haven't died and I just keep on going. I know that this may be scary, especially when you don't know why something is happening. Good news is your young and your chances of a darn good recovery are good! Hang in there! There is alot of support here.

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Have you tried eating something salty when your blood pressure is low? I get where I stand up and hear a whoosing sound in my left ear and get lightheaded. When I get lightheaded and almost seasick feeling I eat a small amount of something salty whether its a couple chips, pretzels, bugles it helps. Make sure your hydrated as well!!! have you thought of drinking Gatorade? I drink Gatorade for the electrolytes and it helps the dizziness some. Hope you feel better!!

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