just got diagnosed with POTS!

Hello everyone!  I have POTS and I'm so glad to have found this forum.  Sorry this message is long!

I wanted to introduce myself, my name is Karin, I'm a stay at home mom, 41 years old, have 3 wonderful children - 12 year old daugher and boy/girl twins who are 10 1/2.  A wonderful husband who has been amazing thru all this ordeal.

It all started back in Sept/08 when I had 2 really bad colds back to back, while I went to the Dr. for antibiotics, she found that my BP was way too high (never had I had this), right after these two bad colds I just began going down hill.  My heart rate was (still is) really high, had to stop excercising (have started a bit of yoga), every daily activity became too hard to do, 3-4X/week headaches (which are still there), dizziness, chest pressure, jaw pain, tingling down left arm, shortness of breath, overall lethargy and just plain fealing sick!

My Dr. referred me to a Cardiologist who did every test 24hr Holter, several ECG's, MIBI test, Ultrasound, Echocardiogram, even an Angiogram and all was normal.  My Dr. then proceed to check for an adrenal tumor - nothing, she checked every organ by doing ultrasounds and MRI's, a multitude of lab work, the only thing found was that my ferritin was too low, she put me on iron pills, this is now at an acceptable level but my symptoms continue.  I was also put on a calcium channel blocker for my BP but no change, my BP is normal as long as I lay down.

I decided to go to a Naturopath as no answers were being found, all I knew was that I felt not too bad if I just laid down.  The Naturopath decided to put me on a vitamin therapy, I take GSF (for adrenals), B5, B12, Iron, Vitamin C, Magnesium, Vitamin D, CoQ10 and Rhodiola, with all of these I take 20 pills daily.  I have noticed improvement where I can now do more around the house, I can go up the stairs easier and without getting winded but my fast heart rate is still bothersome, my BP still goes very high with very little excertion but I feel like I can do more at least.

Just yesterday I went to the specialist for Dysautonomia and after doing the table tilt test I was diagnosed with POTS, I'm soooo releived, I'm actually happy to have this - don't get me wrong I rather not have anything, but after 9 months of having every test normal and me still feeling crappy just knowing it is not all in my head I feel like a big weight has been lifted off my back.

My Dr. was not too sympathetic of my symptoms and had said that if after the table tilt test was normal then it was anxiety, I feel good that I can go back to her and tell her it is NOT anxiety!!!!  I can also tell my mother in law it is NOT "my nerves" well it is but it is a physical thing rather than a phsycological thing.

This specialist has now suggested I increase my water intake (I thought I was drinking enough water but I guess not) I'm to take a glass of water even before I get out of bed, then a glass of water before any activity, like doing laundry, grocery shopping, anything, I have to go back to my family Dr. and treat other symptoms to give me some relief.

For now I'll continue with the vitamins, will increase the water intake but I think just not being so worried it is going to be a big plus.

For those that have POTS and have found other things that help you deal with the symptoms please share!

Karin

[Heiferly]

Karin

Increasing water is a good start.  Some patients are told to increase salt intake as well, but because of your rising blood pressure, this may not be advisable for you.  (So be aware that when the bulk of POTS patients discuss "salt loading" along with their fluid loading, you may need to ignore this protocol because you may be part of the exception to it due to your increased blood pressure.  If in doubt, ask your own doctor.)  Another first line of therapy before medication is tried is graded compression hosiery.  If you're interested in finding out more about those, you may want to read here:  

http://www.medhelp.org/posts/Dysautonomia-Autonomic-Dysfunction/Compression-stockings/show/936330

Depending on how severe your symptoms are, if you can't get enough relief from lifestyle/dietary changes, the next step is usually trying medication.  What works tends to be different for everyone, but if you want an idea of the different medications that are typically used you may find more information in some of the articles here:

http://www.medhelp.org/health_pages/Neurological-Disorders/Further-Reading-on-Dysautonomia/show/696?cid=196

We also have current threads running discussing strategies to beat the summer heat, and everyone's favorite ways to stay hydrated, so you may want to check those discussions out too.  

Congrats on getting a diagnosis, welcome, and feel free to ask questions or jump into conversations!

[karinosa]

Thank you for all the info!

I'll be checking the site often.

Karin

[halbashes]

If I may ask, are there any supplements in particular that have helped you manage your condition?  What kinds of symptoms are you dealing with now?  If high blood pressure is a problem, you might want to ask your Cardiologist about a beta blocker.  You will want to be certain that it won't interfere with your current supplement regime though.

[karinosa]

Hi!

Sorry I didn't reply earlier, I just noticed you had posted!

My family doctor does have me on a Calcium Channel Blocker for the high blood pressure, but I don't think it is working, my blood pressure only rises when I rise! if I'm sitting or laying down my blood pressure is fine, so I wouldn't think it is hypertension, I was going to ask her to take me off of it but I don't go see her until the end of the month so for now I'm still taking them.

As for symptoms... they are all better now then when I started back in Sept./08 but this is what I have: lethargy, headaches 3/4 x/week, dizziness, fast heart rate, pounding heart beats, high blood pressure when standing or doing stuff, chest pressure (that is hardly there now), wake up 4-5X/night - that's better since I switched to taking my magnesium at bedtime ... now I wake up 1-2 x/night, frequent night time urination (better now too), intolerance to bright light (better now too), very sensitive to loud noises, brittle nails, moodiness (better too), digestive issues which are better now too, excercise intolerance - although I have started to go for walks and have managed ok, and before I started taking all the supplements I also had an overall illness feeling - that is much - much better now.

I truly beleive that the supplements I'm taking is what made me feel better, it was within two weeks of taking them that the above symptoms got better, I have had relapses but not to how it was, here is what I take per day:

120mg Coenzyme Q-10
500mg Vitamin B5 (Panthothenic Acid)
1000mg Vitamin B12
500mg Magnesium
2500mg Ester C Plus (it also contains 300mg of Calcium)
900mg Iron (I had very low ferritin)
50mcg Vitamin D

Now for herb stuff I also take:
GSF Complex 3X/day, it is a vitamin-mineral supplement that re-energizes the adrenal glands, the brand is from Seroyal, I found this site that sells it, but this is what it said so you know more about it: GSF Adrenatex provides adrenal cortex and whole adrenal medulla extracts along with synergistic nutrients necessary for the support of the adrenal glands during periods of stress. Deficient kidney mineralization and function, overuse of stimulants, environmental pollution and stress contribute to adrenal toxicity and exhaustion, leading to adrenal atrophy. Serious adrenal dysfunction can cause electrolyte and carbohydrate metabolism imbalances, resulting in circulatory collapse and hypoglycemia. GSF Adrenatex is indicated for symptoms associated with stress and adrenal exhaustion, including allergies, chronic fatigue syndrome, hypoglycemia, asthma, hemolytic anemia, hypotension; and for premenstrual symptoms such as depression, irritability,mood swings, sugar cravings and bloating.The capsules are 100% pure vegetable-sourced  http://www.easyhealthzone.com/GSF_Complex_60_Capsules_p/se0082.htm   Now I got it from my Naturopath, I gues you should check first with your doctors to make sure it would be ok for you.

Once I relapsed, my Naturopath also put me on 300mg of Rhodiola, again this is for the adrenals, although if read about Rhodiola it helps a whole bunch of things, here is the link, and the company that makes the one I take http://www.aor.ca/html/products.php?id=114

Hope that helps you or anyone else, but please make sure to check with a Doctor first, again it was my Naturopath that told me to take all this, I brought the list to my family doctor so she would know what I was taking and she didn't even want to take a look at it, all she said if it is vitamins - that won't hurt you, anyway I'm still taking all these and so far I do feel better, I also feel better once I increased the water intake before I do anything! I drink water before I get out of bed, before I do laundry, before I go shopping, before I go for a walk, etc-etc, also I drink water while I'm doing any of those activities and I can cope much better.

Well my post is quite long now, hope it helps and let me know if you try any of this.

Take care,

Karin

[Heiferly]

If you have not done so already, you may want to have your catecholamines checked.  Based upon your symptoms, it sounds as though you may be one of the POTS patients that experiences surges of norepinephrine (could account for the high BP when upright, difficulty sleeping, sensitivity to environmental stimuli, etc.).  It would be helpful to find out if this is the case, as treatment is slightly different for POTS patients with high catecholamines than those without.  

I'm so happy to hear you're having symptom improvement!  Keep us updated.

[karinosa]

Thank you so much for your suggestion.  No I have not been tested for catecholamines, is it a blood test? I'm a bit ignorant on this, (haven't had a chance to google it either), what would be the treatment if this was the case?  If you can please let me know, I'll try to research it too and see what I find.

I had felt good before too and had relapsed,  we'll see how long I last this time.  I was told that since my POTS started because of a viral infection that my chances of recovery are greater, any input on that?

Karin

[Heiferly]

There are both urine and blood tests for catecholamines.  Your doctor should be able to help you decide what test will work best for you, and what the best protocol for implementing that test will be (as the tests were designed with a different condition in mind).  

You may have more luck finding information if you also search for "hyperadrenergic POTS."  

There's information on prognosis here:  http://circ.ahajournals.org/cgi/content/full/117/21/2814  

Let me know if you need help finding more information.  

[CBergman]

Your story sounds SO much like mine! I am a 38 year old mother of three- my life changed suddenly 6 months ago with a sudden onset of what I now know to be POTS! I am housebound because my dizzy spells are so severe. I was first diagnosed with extreme vertigo, low hemo and iron, trachycardia and othostatic hypotension. I suggested the possibility of it being POTS to a specialist, and she agreed. After some extensive BP testing (stand up sit down lie down...) With my GP, he agrees. I am now waiting to see a Cardiologist, and do the tilt table test. It sounds like you can still function- you are SO BLESSED!!! My hubby is getting me a wheelchair so I can at least go along shopping! I am able to do laundry and cook for my family on good days, but I have to lie down when I get too dizzy. (My doc says this is important because my brain is not getting oxygen!!) I am on a beta-blocker to control my racing heart, and was on CoversilPlus (because of the high BP at times)but I became very dehydrated, and had severe orthostatic hypotension! 70/50's when standing. I now only take half a beta blocker pill, as on a whole my heart rate slowed too much at night- I'd wake up gasping for air, and jump up and move around to get the rate up! (Scary) So I am somewhat stablized, but I have to lie down inbetween everything I do! So I stay home... Love to talk more!! How are your kids coping? My hubby's been AMAZING too- and the kids are OK, but don't really understand when I can't come watch their games sometimes.    Christine

[CBergman]

I should also mention- the first thing my doc tested me for too- was adrenal tumor- he called it Pheochromocytoma. But the test results were negative. I too am drinking SO much water by fluke! One of my most con sistant symptoms is a very dry mouth. I noticed you drink water BEFORE you do something- thank you for that tip! I will try that. I think I usually drink water after I get up and do something- or when my mouth is dry- I will try before! Thanks for the tip!
Christine

[christie628]

I cant believe that I found this site. I was DX with POTS last December.My story is so much like everyone else s I didn't even know what POTS was and have been researching for months. I have episodes of passing out to the point where i have injured myself, and there are days I CANT get out of bed. I am 41 and a mother of 6 children. I was told it was stress, I was told i had anxiety . I had Drs that didn't believe that this was even happening to me. Finally someone noticed that my blood pressure was low and my heart rate was high and sent me for a TILT test. I failed it. I am on all of these meds since Dec of 2011 and I am still passing out, still having trouble functioning . At times my life is so "handicapped". I cant drive...I cant even do laundry during these times. Is anyone else having problems responding to Meds. The Dr treating me for POTS basically said that he doesn't know what other meds to put me on and really makes me feel like he is giving up on me. I was fired from my job because I kept passing out and they said I was a liability to them. I even saw a lawyer and a lawyer said that this will be hard to prove for SSD because I am so young and I don't look sick. Really??!!

I drink TONS of water ...I take salt pills...I am on florineff...mestidone...was put on paxil and the newest one xanex....and i was on many other drugs over the past 9 months....Thanks everyone for sharing your storys because it made me feel like I am not alone....

Christie

[LivingInHope]

Welcome to the forum!

See this thread regarding social security disability:
http://www.medhelp.org/posts/Dysautonomia-Autonomic-Dysfunction/Social-Security--Medicare--Medicaid--etc/show/1091637

Have they done the proper testing with you to rule out Addison's disease?  I wonder if your adrenal glands are not working properly?

Has any doctor tried to make sure iron deficiency is not complicating your life further with an iron panel?  It can make tachycardia even worse and cause fatigue.  Have you had a neurological work up (brain imaging, EEG, etc.)?

  I don't think that employer should have fired you- they should have helped you apply for social security disability!

Are you wearing Jobst compression stockings?  

[ChristineElise]

I'm 27 years old and have been experiencing the exact same thing for nearly three months now. It started with a single syncope episode and have felt this way ever since. I've also had all labs, x-rays, ultrasounds, and mri done without any abnormal results. I asked my cardiologist about POTS yesterday and we are going to continue more tests to see. I feel like you, I know I can do more, but all of a sudden my body has decided to limit me from normal daily activities. I feel like a burden on my family, my boyfriend, and I don't care what I have wrong with me, I just want to find out what it is. My family doctor said I have an anxiety disorder and referred me to a psychiatrist.. it devastated me yesterday, but my cardiologist said he was completely wrong. I am sorry for what you've gone through, but it makes me hopeful that they'll find out this is what I have so I can begin treatment.

Good luck to you and I wish you the best on your recovery!

[Heiferly]

This is a really old thread from years ago that you've responded to. We'd love for you to start your own thread and introduce yourself to the community!

Wishing you the best in finding a diagnosis,
Heiferly.