New And Frustrated

[mammaspots]

Hi everyone, my name is Kelsey and I first want to say how excited I was to find this site! I have been recently diagnosed with POTS and have been lost and angry for a while. This site has given me hope to answers and a better quality of life. Starting January 15th, 2013 my life changed dramatically. I was a stay at home mom of two children, my daughter (now 6yrs old) was in kindergarten and my 3 yr old son stayed home with me. That morning, like any other, i wasn't feeling well. I was tired and just out of sorts but that was my norm so I went on about my day, sent my daughter off to school with my husband as he left for work while my son and i vegged for a bit watching his favorite shows, around 8:30 he wanted breakfast so I reached up to the shelf to get the cereal down and woke up on the floor to my 3 yr old screaming "someone help me my mommy died" as he sat on my chest and cried. I was terrified, i hurt something awful, and i had no clue what had just happened. I instantly calmed him, got him to go get my phone and i called my husband while sitting on the floor terrified to stand, shaking and exhausted! This started our journey!

My husband rushed home and took me to the dr. I explained how my heart just started racing and then i woke up on the floor but they had no clue what caused it. I left the dr's office with no clue what had happened or if it would happen again, all they said was "well your fine now, call if it happens again". I was scared to be alone during the day so we "moved in" with my in laws till we figured out what was going on. The drs said my blood pressure was a little low but fine which was unusual bc i was always text book 120/80 and now i was 95/60. my blood work was normal, everything looked great but i felt AWFUL! I was being treated for depression and anxiety and thought maybe it was a drug side effect but that was not the case either.

The night things got worse, i went up the stairs to get in the shower, when i got out of the shower i passed out again banging myself up pretty good, when i came to i was depleted of all energy i may have had left and just wanted to go to bed so my husband helped me scoot down the stairs (which by the way are now my arch nemesis) but going down didn't go as well as going up, i passed out clipping my husbands legs out from under him and took us both down the stairs the hard way with him on top of me (his description is much more dramatic and vivid lol). Starting the following day i was passing out anywhere from 3 to 7 times a day and was limited to doing almost nothing.

We went to a different dr asap, that dr got me into a cardiologist and a neurologist. Let the testing begin.... i've done holter monitors (in office and 24 hr) both stating a jump in hr but nothing to concerning, EEG (in office), EKG, ECHO w/bubbles, MRI, MRA, CT(with and without dye) every thing came back "normal". They were starting to say it was all in my head, that i didn't really have these issues and i was soo frustrated bc i felt like no one understood or believed me.

Finally one night while very doped up on pain meds from all the fainting injuries we had a sort of break through. i passed out and my family couldn't get me conscious for more than a few seconds to a minute. They called ems and rushed me to the hospital where i continued to fade in and out and was admitted. my hr kept jumping but they couldn't figure out why so they after two days there they sent me to Baptist where we did the 24hr EEG and they officially ruled out a lot of things but didn't diagnose me. One of the drs there decided to go out on a limb and put me on the tilt table. laying there i felt fine, i was talking to the nurses running my test and they told me the were going to stand me up and if i felt any different to tell them. Well they set me up and i remember saying "Going well....oh no not so." and then they were standing over me. my hr jumped from 86 to 127-135 (fluctuating for a min till they laid me down) but my bp didn't change much. The cardiologist there "labeled" me POTS but didn't give me hardly any info, as the other drs before her i was told "well go home and cope the best you can, nothing we can do for you".

So at this point we leave baptist, go back to my pcp and he sends me to a psychiatrist bc in his words "People with POTS don't faint this often". The psych tells me i have extreme anxiety causing the fainting and medicates me, which seems to be helping with the anxious feelings but my lifestyle changes are whats helping the fainting, not the meds. The drs are still trying to "figure me out" as they put it and i'm so frustrated!! I can't drive, or be alone with my kids, my life is so different now and its hard to adjust.

Over the last 6-7months i have discovered a few things on my own through trial and error, and research. Heat is a no go for me, anything outside when its 75 and up puts me down, flying is an all out nightmare!! i could barely stay awake during take off/ landing, car trips to the mountain are hard as well. showers in general just don't happen but i can't sit in hot water for a bath either so i must sit in the tub with the shower wand. activity is limited and at times i feel like life is just over. my doctor isn't really "treating" me at all, he has little to no info, and tells me to just try new things and if it doesn't work don't do it. Any advice or help you can give would be greatly greatly appreciated bc trying to learn on my own has been a nightmare and just knowing there are people out there who will hear my symptoms and not say i'm being a baby or its all in my head means so much to me i started crying!

so far all "triggers"/symptoms are fairly well maintained but still annoying!! the constant fatigue is one of my biggest issues, the syncope was/is very rough but for the most part is now maintained by paying close attention to my hr (while i can't stop the spike in hr i now notice little signals i never saw/felt in the begining), new breathing techniques to maintain a low lvl hr, elevating my legs often, avoiding stairs and elevators when possible, avoiding stressful situations or anything that gets my hr going fast, major water and salt increase (i crave salt so badly i will literally eat it plain straight from the shaker), dizziness still hits from time to time but isn't too bad, i can't power clean like i used to i have to take it slow in everything i do with lots of breaks. I know i'm doing better but I want to drive again, i want to play with my kids and live an active lifestyle, will that ever happen for me? am i destine to live like this forever? what can i do to make it better? has anyone actually recovered from this? my daughter, bless her heart, was asked if she wanted to climb in bed with mommy while i was at the hospital and her answer was "NO!!! i don't wanna catch mamma's passing outs!" and as precious as it was, as much as she made me giggle, it worries me that it could be something that will be passed on to one of my kids. does anyone have more info on if genetics play a role in this?

I know there are many more questions i want to ask but my memory is also horrible now and i can't think of any of them at the moment. I just want to thank all of you in advance for any help you my have, and just to thank you for being here and letting me know i'm not alone! God Bless you all!

[MomtoGiuliana]

Welcome to DINET, although I am sorry you had to seek us out.

I have POTS and have dealt with disabling fatigue/weakness, but I have never passed out. While I think it is true that POTS patients do not typically pass out as frequently as you have been, there are a few members here who do or have who can share their experiences and suggestions with you. I know some patients are diagnosed with BOTH POTS and NCS.http://www.dinet.org/NCS/ncs.htm

As far as recovery, typically POTS patients do improve over time and with the right meds. It can take awhile. I remember my specialist telling me that average time to "recovery" is 4 yrs. I would say I recovered in about 8 months (after diagnosis). However, I still have relapses, some of which can be severe--but typically do not last longer than a week. I can drive, work and am 90-95% of my former self most days.

On your question of genetics, yes, this can sometimes be hereditary--depending on the cause. Although in many cases the cause is not known or well-understood. EDS for example, causes POTS and is an inherited condition. Some of us do find that our symptoms are present in other family members, although it can typically be quite variable in severity. Anyway, that is my observation from what I have seen on this forum.

Best wishes in finding answers and better health.

[Guest Hanice]

Hi Mama's Pots!

I'm glad you found this site. It's really horrible to have this but you'll soon notice you're not alone.

[IceLizard]

Hi, I just want to say that I have almost the exact same problem as you; I have POTS but I also pass out. When they did a formal tilt table test on me my heart rate jumped to 150 bpm and my blood pressure dropped drastically, causing me to lose consciousness. My doctors tell me that is not pure POTS since I also pass out, and instead simply label it "dysautonomia with syncope". It's really frustrating sometimes, but sites like these with information like http://www.dinet.org/what_helps.htm. have helped me a lot.

Things that help me:

1) Thermotabs salt tablets

2) drinking lots of water

3)abdominal compression device

4) exercise on my recumbent bike, which I also use for getting around town since I can't drive. (I have a bike trailer for the little one, too) This is the one I have: http://www.terratrike.com/

5) Avoiding stairs and hills

6) Eating smaller more frequent meals

7) Medications: Florinef, Cymbalta, Metoprolol

I also suggest you get around to seeing a doctor who knows how to treat POTS (even if you have to travel). I highly recommend Dr. Blair Grubb in Ohio, but there is a long wait to see him. There are lists of doctors who treat dysautonomia online and perhaps there is one near you. There are also exercises you can do that will help recondition your cardiovascular system. Its important that you start with exercises you can do while laying down so you don't trigger an episode. Exercise won't cure you, but it should help reduce some of the symptoms.

Best wishes

[mammaspots]

I saw on this site that there is a dr about an hr from me so i plan to call in the morning to see when i can get in to see them. I'm hoping that when i go back to my pcp i will be able to get on a new plan of action to help with symptoms (i have a LONG list of things to discuss with him from this group) and i'm praying that the specialist will be able to see me soon!! I can "tolerate" all the symptoms when they are not coming at me with a vengeance, but i crave my freedom, i just want to drive and be happy and have energy again and some days are better than others but i want more good days than bad! thank you so much for the feed back and i can't wait for my next appointment to share my new found knowledge and see where i will go from here! also i dont know if NCS really fits me bc when i faint my heart races, my family says while i'm out i look like i'm running a marathon bc my breathing is shallow and fast and my hr is high (140-180 depending on what triggered the episode)

[cupcakemomma5]

Hi Kelsey,

Welcome to the forum. I has been a godsend to me since my dx last August (some say I am still a newbie with the whole POTS thing)

I understand how scary it is with kids, my 5 range from 4-16. And it is just as scary for them.

The advice I can give you is just what I learned in my quick year.

Question everything.

If you feel off kilter, then you are. Take it easy that day.

I was worried my kids would think I was the wet rag for everything....And that was false.

I find we tend to over analyze everything, and then that doesn't help with us trying to control hr and bp.

And probably at this point in our lives we get to be selfish (which is ridiculously hard cuz we are moms...yep.....to our kids we are gold.) I have learned on my really fatigued days I get some kiddie movies and we camp out in my room and put the oldest kids on food duty. Works out well

Anyways, glad you found the sites and if ever you want to chat pm me

Cheers

Tara

[Mydoggielovesme2]

Welcome Kelsey, so glad you found us. Fainting was my first symptom also. Finding a Dr that knows how to treat POTS will be a crucial step in getting some control of your life back. I'm glad to hear you are already looking in that direction. Hang in there. Shona

[looneymom]

Hi Kelsey,

Welcome to the forum. Sorry that you are having such a rough time. I am a mother of a son that was diagnosed with POTS 3 years ago. The best advice I can give you is to go see a POTS specialist or get to a medical center that knows about POTS. My son went to MAYO but there are other places such as Cleveland or Vanderbelt. If you crave salt, be sure to drink your fluids. This was one on my son's first symptoms. He would salt everything very heavily.

[shan1212]

Hang in there. I'm a mother of two, too. I can totally relate to your frustration. But there really is reason to have hope -- I'm managing pretty well with medication and lifestyle changes and I am hopeful that I can improve even from here. Hugs.

[Guest Alex]

Kelsey,

welcome to our community.

Looks like you've got some great advice so far, so feel free to browse around, ask questions, make new friends...etc. In all honesty, this site has helped me more than all the drs I've seen.

Hang in there and know that we're here for you.

Alex

[Akgirl]

Hi, wow! Sounds like your writing my own story!! I am a major fainter with pots too but I also have seizers as well you need to get compression stockings ASAP!! They are so ugly, brown and expensive but in fainting pots cases like us, they are literally life savers!!! I wear 30-40 hz all day every day!! also I have learned to "push my faint down" I know that sounds bazaar but its a little like smothering a yawn. I am certainly not always successful but sometimes I can feel my self starting to go down and I can push it down? Also I am on lots of medicine!! as well as physical therapy and vestibular therapy for major visual problems and dizziness. So don't give up!! Go get a good neoroligist and don't give up hope.

[dmjl27]

Your story sounds somewhat familiar to mine of the sudden onset! Please read my link....u are not alone for sure!

http://forums.dinet.org/index.php?/topic/24029-bedridden-for-a-year-pure-autonomic-failure-getting-worse-month-by-month/

Mine started very similarly to yours. I believe the lack of 'diagnosis' for almost a year led to me getting worse. I would strongly recommend you getting your doctor to send you to a dysautonomia clinic. (Mayo, Vanderbilt, and Cleveland) Try not to let an uneducated doctor discourage you or make you think you are going 'crazy'. It's only due to a lack of education on this rare syndrome. I am a wife of a doctor, and have been shocked at how little is known about dysautonomia in the medical field. I literally had my ER doctor 'wikepeida' Pure Autonomic Failure' right in front of me! Scary!

I'm one that passes out often, too. I have learned to control most of it, but then again, I don't get around anymore. Learning your triggers are so helpful. Medicines are a trial and error. What works for one person, may not work for you. I would say the key is finding a good doctor with a great understanding of your condition!

I sympathise with you!!!!! Feel free to jot me a message if you'd like...I've done a lot of research and have visited doctors all over the country. Good luck!!!!!!!!!!

[Christy_D]

_{Hi and Welcome to the forum. My son was diagnosed over a little over 4 years ago (took over 2 years to get the correct diagnosis) and my daughter is also having issues(she is my fainter). Since June of this year, with the right combo of medications, my son is feeling much better. His was so bad, he did not attend school his entire high school years. While it did take over 4 years, he is doing much better. He still has daily symptoms, but he is sooo much more functional. I was beginning to think he would never get relief. So keep your spirits up, it may take awhile, but believe that you will get better.}

_Christy