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Need POTSie support. My story


Lissa1707
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Hi everyone. My name is Lisa. I am 26. I was diagnosed with POTS in September of 2013. Like many of you I am sure you have told your story so many times that it is literally exhausting when it's time to see the next new doctor because you have to go through all of it again but I have finally reached the point where I need support from my fellow potsies. So here's my story. In August of 2013, I went into an arrhythmia while at work. I am an ER nurse and based on my symptoms we all thought it was SVT. I had struggled with resting tachycardia before starting at 19 and since I went back into a normal rhythm on my own we didn't think much of it. Three days later I went into the arrhythmia while I was driving and had to pull over and call 911. My life has never been the same since that day. In what I call my acute phase I was very symptomatic: passing out, light headed, dizzy, tachycardic, hypoglycemic--I could barely stand. We didn't know what was going on or why this was happening. We thought it was from the meds they were trying to treat the SVT with--boy were we wrong. I had been hospitalized previously that March for mycoplasma pneumonia (most likely my pots cause) and had never really fully gained my stamina back so my established cardio doctor was trying to treat me for the "SVT". Luckily he referred me immediately to a cardio electrophysiologist who diagnosed me with POTS on my first visit. My symptoms were so significant a tilt test wasn't even needed. My cardio tells me I am the second worst case he has seen for autonomic dysfunction but I have learned I am very lucky as I have learned about the dysautonomia community. I know now how lucky I am to have been diagnosed so quickly--I've read how so many people wait years. But when I got POTS everything else was going wrong too. I also have hashimotos hypothyroidism (since 12)--I was in full flare and I went from an on the clock harmless cycle to erratic menstrual cycles and severe adult onset acne. Those first few months were so difficult as we searched out other possible exacerbating illnesses with continued failure to get answers from physicians who just had no clue and didn't want to listen. I had lost hope in the very community I served in. What happened to caring and compassionate doctors? My career revolved around serving others at their worst and I could barely find one physician to show me compassion. I am grateful that my cardioelectrophysiologist was up to date and after many medication fails I ended up on midodrine and mestinon and I was sent to PT for reconditioning. After thirty days of that I still wasn't getting better. It wasn't until my PT recommended I try following a paleo diet for 30 days. It finally worked in that with this diet, my medications and compression socks I was finally able to do basic daily functions. But it's been a vicious cycle. I will never forget the day my cardioelectrophysiologist walked out of the exam room when I started crying because he said there was nothing else he could do for me and this was my life and we would have to adapt. I don't remember what a good day is anymore or how to answer how are you feeling? It's either bad or less bad. My condition waxes and wanes like many of you and I've had to make adjustments. I took a management position in my ER because my body could not do 12 hour shifts anymore. We have been told recently that I will most likely not be able to carry a pregnancy safely. I got a new PCP recently who is a functional medicine doctor and her PA is great--we started new treatment for hormone imbalance. My husband is always saying he's willing to do whatever and go wherever for us to get answers. We don't know when we should accept that this is our new life or if there is hope that someone is missing something else or there is a physician out there who can help me. Most recently I started having the GI issues that some potsies have and had an EGD yesterday. As you can imagine I'm worn down from the sedation and frustrated that I can't just bounce back. My faith has been the only thing keeping me grounded and I try to focus on what I can do instead of what I can't and I know others have it much worse than me. I'm just frustrated and exhausted and I feel like my choices have been taken from me. I struggle in what purpose God has for my life--what can he do with me when I can barely get through the work day and make it to my sofa? I feel guilty that I won't be able to give my husband a biological child. It's just been hard and today is a hard day. I am grateful to have a great husband and Mom and I am grateful to this forum that I was able to get some direction from some people's posts who had EGDs done with POTS. If you've made it to the end of this thank you for taking the time to read my story. 

-Lisa

POTS, hashimotos hypothyroid

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Hi Lisa,

Many of us will make it to the end of your post as we share similarly long stories. :) I'm glad you have found our community.  I have found so much support here, in addition to useful information, and the support has kept me grounded.

So, one of the hardest things for me has been the up and down emotional roller coaster of hoping for answers, getting none, finding a new doc and doing it all over again. I am dxed with POTS, EDS, and MCAS but I have some other extraneous issues that aren't really explained by these diagnoses. So, after 9 yrs of docs (I stopped counting after 30 docs), my current medical team and I have decided I need to revisit ID, rheumy, and a rare third possibility. So, off to more new docs I go over the next few months. I think, for me, the key to keeping my sanity has been to learn acceptance and bestowing kindness on myself. I accept that this is where my body is and that's just that. However, I do believe I need to advocate for myself and so I will continue to see if we can answer these last few questions we have about my symptoms. I am in a place where I realize that there may not be answers. I am lucky to have finally found docs in the last few years who are smart, utd on research, honest, and compassionate.  I certainly went through a number of docs who were the antithesis of compassionate and they were fired. ;) In my opinion, it's up to you how hard and for how long you search for more docs/treatments, etc.. It's a very personal decision and there have been a couple of times when I had to take a temporary break (2-3 months) from doctors for my own mental and emotional health.....like stopping to catch my emotional breath. 

Hang in there! We will be here to help support you!

Katie

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Hello Lisa,

I’m so sorry that you’re going through such a difficult time. I can relate to everything you’re feeling, particularly the guilt.

Like you my husband wants us to have a baby and I’m not sure if it’s going to be possible. I also have to lean on him a lot when my POTS flares up. He is very supportive but I don’t like him having to play the role of carer in our marriage.

Staying positive when you’re living with a chronic illness is a constant mental battle. What has helped me greatly is meditation and writing. For some reason jotting down my feelings on paper each day helps - I guess it stops me from getting overwhelmed.

I also list all the positive things I can do to make myself feel a little better. Simple things like spending time with my two year-old niece who I love to bits, making healthy smoothies for breakfast, relaxing in nature etc. It may sound hippy dippy but I find being near the water or sitting in a park amongst the trees recharges my spirit and calms me.

I also think it’s okay to have a big cry occasionally and let all that fear and frustration out because what’s happening to you is incredibly unfair. Just don’t lose faith in your body’s ability to heal - a better day is around the corner. I agree, that diet and exercise can help us manage our symptoms.

If you ever need to vent feel free to PM me. You’re not alone in this.

Angie X

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Thank you both so much for the encouragement. I can't tell you how much I needed it

Katie-the physician roller coaster has been the hardest on me. Getting my hopes up just to be let down again and again. If we decide to seek out another physician I think our next step would be Cleveland clinic or Vanderbilt. No one is impressive here in my state for knowledge base on POTS and I also have that gut feeling that someone is just missing something. 

Angie--I used to journal a long time ago and may need to revisit that. Nature brings me a lot of peace too! It's so hard down here because the heat is so bad but when I can sneak some time on a good weather day I try to at least sit outside. 

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Hang in there, Lissa!  And hang on to your faith.  It will get you through.  Sounds like your husband is awesome, too.

Am I allowed to post an explicitly religious comment, given that the OP mentioned it?  I hope so.  Here goes:  

Keep asking God about your purpose, and keep listening for the answer.  He'll tell you.  And if all you can do is lie in bed, you can also pray.  Relationship-building-with-God prayers and intercessory prayers.  Modern American society values people for what they can do, but God doesn't.

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Hi Lisa 

i am sorry you are going through a difficult time, I have found it very difficult to accept the new me and I still struggle not to get frustrated with myself at the lack of ability to do things I use to but I look back at when I first crashed and remind myself of the improvements I have made even if they are small .

Having support from your husband is so important , we feel guilty unnecessarily because in fact they love us for who we are not what we are,  something my husband reminds me of in my frustrated moments ! 

I have had some very bad experiences with Drs over the years with different health problems, I stopped going to the Dr fir some time as I was told I was depressed . Eventually circumstances forced me to seek help and although it has been a struggle  I think I have found the right pots Dr, time will tell , so I would encourage you to keep searching 

wishing you all the best

 

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Hi Lisa, I'm also Lisa?

Thanks for sharing your story. I understand and can relate in many ways. Both of my "kids"  (23 & 19) have POTS, and I am now being evaluated for it. UGH! Thankfully we have an outstanding doc who has become quite a POTS expert (we're in Oregon NOT near a major city). I go back and forth between trying to accept my health and thinking "what am I doing?! I need to fight harder/advocate/question!" My symptoms are pretty classic POTS (I'm mostly in bed now) but my heart rate doesn't increase enough on standing to classify clearly as POTS. Sadly, as I read your post, I briefly thought "I wish my tests were that conclusive" WHAT??!  ? I guess that just shows how desperate we can be for answers! My doc is doing trial tests with me with Fludrocort and Midodrine just trying to knock down symptoms and hone in on what's going on. 

I'm so sorry you are dealing with all this - there's just no rhyme or reason to it, but I hope you find support and great info here. Keep us updated! 

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Hi Lissa,

I, too, am a nurse and found it to be so frustrating that I couldn't find a doctor to help me. There were many docs I went to where I said "check please..." right after they walked in the room. I found it to be a mourning process after my diagnosis. I was always very active and this disease has made it difficult. Just know that you should never give up. I fluctuated in my health status through the years....2 years ago I started exercising strenuously (slowly worked up to it) and I lost 20 pounds. I also ate healthier than now. Most of my GI pain subsided and I felt really good and more stable than I had since being diagnosed. However, my job got more demanding and it completely knocked me off the rails. Thus, now, I've gained my weight back and am having more problems. My goal is to SLOWLY start moving again so that I feel better & can function better. As an example: I had 3 tubes of blood drawn last week and it knocked me out completely! My BP Monday night got as high as 200/130!!! I didn't have energy and by the end of the day could barely formulate a sentence. I know we are all sensitive to volume shifts but I truly did not think just 3 measly vials of blood would do that to me...WOW! Anyway, hope you feel better! Don't give up!

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  • 2 weeks later...

Oh Lissa, I can so relate. I'm 36 and have been sick for 5 years, though in retrospect I've had POTS since puberty. It was just ramped way up by my second pregnancy. It's hard to let go of who I was. Still to this day I give myself a hard time for not being able to be the person I was 5 years ago. I am working on acceptance.

This has also caused stress in my marriage. Thankfully we have grown a lot, but it was a big change in our dynamic. Before POTS I was very low maintenance and independent. It turns out that as a result, I married someone who is not that strong with empathy or care-taking, which was fine for my pre-POTS self. We have had to learn how to be a united front against this disease rather than letting it divide us. It's an acceptance process for my very active husband as well.

I'm still on the roller coaster, still trying new things (just recently started a low carb, high protein diet, and you're right, it's been helping). I was all excited this week because I upped my work-outs and was feeling exercise-highs again for the first time in forever. And then of course I overdid it and crashed. Ugh. 

I got through my pregnancy with POTS, though of course every case is different. I've heard people say their POTS was even better during pregnancy due to the increased blood volume. Personally I am not willing to go down that road again when I need to be healthy and present for the two children I do have. But my doctor assures me he could get me through a pregnancy if that's what I wanted. Knowledge is power, and if I ever do become pregnant again, I won't be so blind-sided by the difficulties. 

I know what you mean about never feeling good. I say that to my husband all the time. Just sometimes I feel "less bad." This week, though, with my longer but less intense workouts, I did feel high on endorphins a lot of the time. I still felt tired, of course, and at times standing was difficult. But it was a big improvement. Hope springs eternal, so I am hopeful that I can continue to tweak things to give me the best quality of life possible. I'm also addressing my allergies with shots and feeling a lot better off the sugar roller-coaster with my changes in diet. I'm having a lot fewer headaches too! 

We all understand. Hugs.

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