Pots Just Diagnosed

[dizzydaze]

Hello from Australia I have just been diagnosed with POTS and Syncope. Do you all mind if I rattle off with my symptoms? For about the past 4 or 5 years I have been experiencing strange seizure like activity after having a shower. I would be suddenly gripped by a strange feeling, an adrenaline rush and I would then start being unable to stand only to be relieved by lying down. I would also get a headache sometimes afterwards for a few days. Sometimes these symptoms would go on for a few days after the initial episode. This only happens every few weeks or every few months. Nine months after the birth of my daughter I started getting dizzy, dizzy, dizzy. Everyday dizzy on and off all day everyday. Tired ALL THE TIME. Have had heart palpitations for as long as I can remember. I have been to many doctors. Had MRI, 3 EEG's, ECG and vestibular physiotherapy. EEG showed up slight abnormality. So they diagnosed Epilepsy. On seeing another Neurologist she has said in her opinion it is POTS with Syncope and Pre Syncope. Have only fainted a few times but used to have bad Menstral episodes of blacking out and nausea, sweating aswell. The Syncope episodes now only seem to happen around "this time fo the month". I also suffer from panic attacks and anxiety. All of the symptoms are aggrivated by stress and lack of sleep. Even going to a shopping centre is an all out dizzy attack. If I get up too quickly sometimes I see black spots or get a bit of tunnel vision or a head rush. I am glad it is not Epilepsy, but now I am in the early stages of finding out about POTS. Do you all think this sounds like POTS? How will this effect me if I were to get pregnant again? Do you think this is POTS in a mild degree or moderate or whatever? How much salt do I need? The dizziness is like a fuzzy/dizzy and sometimes like a lightheadedness and sometimes like standing on a boat. It also happens while sitting down, is this because I am still upright and my body is still adjusting to getting up and down? One last question do any of you feel sick the instant you lie on your back, like a painful nausea. I can lie on my side, but not on my back.

Thanks for any info you give as not too may docs have heard of this in Australia.

All the best

[JaneEyre9]

Welcome to the forum, dizzy! Your symptoms sound a lot like what I experienced when i was first diagnosed with POTS (though i had a viral onset, not from giving birth). I too had symptoms off and on for at least a couple years before i fainted and became dizzy and tired all the time. I couldn't function to drive or go to work after that. I would experience symptoms sitting and standing and I was always worse around my period. (At my worst i would also experience symptoms lying down.)

As for how much salt you need, a doctor usually determines that. What i try to do is liberally salt my food and go out of my way to get salt into all my meals (like eating pretzels, having soup, and drinking electrolyte replacement drinks). Also drinking water all day helps a lot. I carry a bottle of water with me everywhere (and if i don't, i end up very sorry)

How "bad" your case of POTS is usually is determined by your heart rate and blood pressure changes upon standing as well as how much your symptoms affect your life. If you cannot do your normal daily activities because of POTS, then it is having a major impact on your life. You can take your heart rate while lying down, and then while standing to see how much of a difference there is. Have you had a tilt table test? That is the common diagnostic test for POTS.

I think after reading many posts here, you'll find people with symptoms and onset just like yours. You can also explore the main DINET page for symptoms, treatments, and other helpful info.

http://www.potsplace.com/

Welcome!

Kristen

[Guest sonotech]

WOW, Australia....have always wanted to go there!! WELCOME!

Well, it sounds alot like POTS to me. I had many of the same symptoms you have, initially. It is VERY common for POTS to worsen during a hot/warm shower due to vasodilation from the heat...I would try to take cooler showers, that helps me alot!

POTS can be brought on by pregnancy, but sounds like you may have had problems BEFORE that. Have they ever checked you for MVP (Mitral Valve Prolapse)? When you change positions MVP can cause the near syncope spells....and MVP can ALSO be related to POTS! I read that up tp 40% of MVP cases or NOT DIAGNOSED even with an echocardiogram....have you had an echo yet?

As far as pregnancy goes, if your last pregnancy went well, then the next may so also. I went through 4 very normal healthy pregnancies with POTS.....though I know it is different for everyone. If you DO have MVP, pregnancy can actually make you feel BETTER. If you do plan on getting pregnant again, I would just consult with a Maternal Fetal Medicine specialist (can have PRE-conception evaluation)....don't know if you have these docs in Australia???

As far as sodium intake...I take 1 gram sodium tabs twice a day and was told to put lots of salt on my food ALSO!

I don't think any of us here can really tell you to what "degree" your illness is at, since it is very different for everyone and only a doc could tell you, but I did find an article by Dr. Grubb that has a "grading scale":

Grade I

-subject is able to stand >15 minutes on most occasions

-subject typically has unrestricted activities of daily living

Grade II

-orthostatic symptoms are frequent, developing at least once a week

-orthostatic sx commonly develop with orthostatic stress

-subject is able to stand >5 minutes on most occasions

-some limitations in activities of daily living is typical

Grade III

-orthostatic sx develop on most occasions and are regularly unmasked by orthostatic stresses

-subject is able to stand for >1min on most occasions

-patient is seriously incapacitated, being bed or wheelchair bound because of orthostatic intolerance

-syncope/pre-syncope is common if patient attempts to stand

HOPE THIS HELPS.....and sorry for the LONG post!

[bttrflyamby1981]

Just wanted to welcome you!!

Best wishes,

Amber

[Guest dionna]

one day i will visit australia!

welcome to the forum. rattle on all you want! its that time of the month for me now and i am sure to go down at anytime as well. i also have the headaches and showers have become out of the q (question) for me. just letting you know you aren't alone and of course feel free to ask whatever you need to. i wish you great luck and i hope you get to feeling better.

dionna

[dizzydaze]

Thank you all for your help. You all sound so nice and I hope I can ask a few more questions??

From looking at other threads/posts it seems alot of you have multiple diagnosis' for different illness. Does POTS lead to other illnesses or are we just suseptable because we are unwell? I am worried that my symptoms will get worse and lead to other things. What has been your experience as mine has got worse since the birth of my daughter. I seem to have a family history of POTS as my Mother and Grandmother and Aunt all have symptoms of POTS. I just hope my daughter doesnt get it. So....

Does POTS get worse.

Does POTS go away on its own.

How long do we have it for.

Have you all tried alternate therapies as my Mother finds Homeopathy very helpful for her dizziness.

How wonderful is it that we can get support from the other side of the world

Keep strong.

[Guest sonotech]

Dizzydaze,

POTS can be a syndrome associated with other illnesses. Like there is a connection between autoimmune disorders (like Lupus) and POTS...meaning POTS can be secondary to the autoimmune disease.

In this situation, the prognosis is dependent on how well the underlying disease is treated. If the autoimmune disorder gets under control, then POTS should improve.

POTS can also be linked with EDS (Ehler's Danlos Syndrome) which is a connective tissue disorder.

POTS can also occur from Chiari I malformation.

POTS can be "post viral". Some people get POTS after a virus (etc, Epstein Barr virus ). Most information states that the "post viral" form of POTS has a better chance of a complete recovery, though it can take a few years.

So, POTS ca go away, or maybe improve, but no one knows for sure what YOURS will do because we are all different. Some people have more serious, progressive forms of dysautnomia.