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New to forum - my story - looking for help!


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Hi everyone, 

I am looking for some advice/guidance/relatability!

In hindsight, I have had symptoms of dysautonomia since my teenage years (my vision would black out when I got out of bed in the morning, occasional blood pooling in my feet, and GI issues if I ate a big meal). I’ve always thought these were normal.

Then about 2.5 years I woke up one morning with a really swollen salivary gland. I was travelling at the time and didn’t think anything of it and it went away, but then I started developing fatigue, especially in my arm and leg muscles. I underwent some blood tests but again nothing came of it so I learned to live with it.

Fast forward to last year, I had a beautiful baby girl in October. The pregnancy went really well but then I developed postpartum preeclampsia. I recovered well but at 4 months postpartum my symptoms exploded.

It started off with joint pain in my hands and feet, then pins and needles. Then I noticed blood pooling in my feet every time I went for a walk. Now my legs get really weak, and by the end of the day I can feel them shaking. I have become really intolerant to heat. I can’t seem to regulate my body temperature for example drinking a cold bottle of water and getting out of the shower gives me shivers. My pupils seem to have trouble adjusting to light and dark. I am constantly lightheaded. I am getting adrenaline surges and night sweats, and having a lot of trouble sleeping (which I did not have in the first 4 months postpartum). I also get a burning sensation in my feet at night. I also seem to get tremors on and off. My symptoms are a thousand times better come the evening.

I now have a positive ANA, and am awaiting seeing a rheumatologist. I have a few questions and would be grateful for any input. I am beyond terrified what this means for my beautiful daughter who is only 6 months old. 
 

1. I can relate a lot to the symptoms of hyperpots. For those that have this, do you symptoms come and go in flares? Could this be a bad flare that I am in postpartum?

2. If it is hyperpots, is the possible autoimmune diagnosis related? As in, could I have an autoimmune condition this whole time that is causing the pots? I suspect Sjogrens because of the salivary gland issue.

3. I am finding it really difficult to cope at the moment, especially considering my daughter is so young. For those of you with children, and those without, how do you find hope? I don’t recognise the body I have now from 4 months ago, it’s crazy! And I’m terrified it’s only going to get worse. 
 

Thanks so much in advance everyone. This community seems really lovely and encouraging.

E

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2 hours ago, EH89 said:

1. I can relate a lot to the symptoms of hyperpots. For those that have this, do you symptoms come and go in flares? Could this be a bad flare that I am in postpartum?

Hello @EH89, and welcome to this forum! -- I have HPOTS, and had it since childhood. I was diagnosed in 2012, and my symptoms started after child birth. I suddenly became so hyper, tired all the time, and i also developed joint pains. It very well could be a flare due to the changes your body went through after giving birth, and it is possible that it will improve. Many women do get better. For me that was not the case, and I became chronically ill. 

2 hours ago, EH89 said:

2. If it is hyperpots, is the possible autoimmune diagnosis related? As in, could I have an autoimmune condition this whole time that is causing the pots? I suspect Sjogrens because of the salivary gland issue

My first thought also went to Sjogrens. Have you seen a rheumatologist? There are specific tests for Sjogrens. I was tested for autoimmune disease by a rheumo due to elevated ESR and continouus joint pains and swelling ( I tested negative for autoimmune but my autonomic specialist placed me on Plaquenil for the joint pains and it helps. ) They have found that POTS is highly related to auto-inflammatory issues ( not the same as auto-immune ). 

 

2 hours ago, EH89 said:

3. I am finding it really difficult to cope at the moment, especially considering my daughter is so young. For those of you with children, and those without, how do you find hope? I don’t recognise the body I have now from 4 months ago, it’s crazy! And I’m terrified it’s only going to get worse. 

Oh - I sooo relate! When my daughter ( now 16 ) was that little I worked full time and on days off had barely enough energy to take care of her - there was not an ounce left for my poor husband! I too felt like an old woman - at 37! I told my PCP that I used to be like a sportscar and now felt like a 1966 pick-up truck!!! The hyper-surges, nervousness and feeling overwhelmed switched existence with extreme fatigue and weakness very fast, and I became extremely irritable. Think: when our ANS goes in overdrive we are constantly trapped in the fight-and-flight response. I explain it like this: if you are fighting off a mountain lion you find questions about what's for dinner quite unimportant. I used to snap at people a lot, and it took all of what I had to take care of my baby. 

There is hope, and it CAN get better. First of all: get someone to help with the baby. You need time to retreat and rest when things get overwhelming. Lie down WITHOUT INTERRUPTIONS and calm down. Then get up slowly. Do only one thing at a time - I find that doing this helps avoiding surges. When you can concentrate only on the task at hand you can be calmer. Drink a LOT of fluids and increase salt ( check with doc first if you are nursing ). Wear compression hose - this is very important and can help avoid surges. 

If you have problems with fast HR ask your doc to do orthostatic vital signs - lying, sitting and standing at 1,3, 5 and 10 minutes. If you HR goes up 30 BPM or more it is considered POTS. Then ask for a Tilt Table Test - the proper form of the same test. This test is used to make the official diagnosis. 

Next would be medication: the most commonly prescribed med is a beta blocker, but there are many others used, different ones for different mechanisms. Also - getting checked for autoimmune disease and then treated for it can help stabilizing your POTS symptoms. If you are nursing it is possible that the added demands on your body are triggers. Check with your OB-GYN if this could be the case. Some women find that once weaning off the symptoms improve to a degree. 

Here are some articles from our Information Resources Site that you might find helpful: 

Hyperadrenergic POTS (hyperPOTS) An overview of a POTS subtype - POTS - Dysautonomia Information Network (DINET)

What are the Mechanisms of POTS & other forms of Dysautonomia?

How is POTS Diagnosed? - POTS - Dysautonomia Information Network (DINET)

I wish you well, and hope that you will improve. I was hopeless and became depressed when I found myself unable to cope and function when I first became ill - but it did get better for me. I am one of the unfortunate people that got stuck with POTS as a chronic illness, but today I live a fullfilling life ( despite my limitations ). Once your AI issues are diagnosed and treated you might find yourself in better place. Best of luck - this forum is a good place to share how you feel, and to ask questions. May here have been in your shoes! Stay strong - 😉

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@Pistolthank you so much for taking the time to respond.

It really is very encouraging to hear that you live a very fulfilled life despite the challenges. If you don’t mind me asking, what does your life look like now? What are your limitations so to speak?

I am in the process of getting an appointment with a rheumatologist to investigate AI issues. 

One final question, I have been having a lot of trouble sleeping lately. It seems to be a mixture of anxiety and the adrenaline. My GP has given me a benzodiazepine to assist but has stressed it is only a short term solution. Any suggestions? I also have been taking propranolol.

thanks so much

E

 

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2 hours ago, EH89 said:

f you don’t mind me asking, what does your life look like now? What are your limitations so to speak?

Well - I am considered fully disabled, so I am homebound. But with help of meds and IV fluids ( I have a port and get fluids when I need them ) I have been able to avoid seizures and syncope ( which I used to have all of the time ). I can pretty much take care of our household chores but my husband does all of the driving and shopping. When I have a good week I can garden ( my passion! ). Compared to what my life used to look like I consider myself lucky, and I feel pretty independent. 

Regarding sleep - insomnia is a typical problem of POTS and it is hard to get ahold of as long as the POTS is not controlled. I used to be so wired from the high adrenaline levels that I fell asleep almost instantly but kept waking up after 3 hours - the time when normally the adrenaline drops to allow REM sleep. The SSRI Lexapro has helped me with that, as well as the IV fluids ( they help with ALL of the POTS symptoms for me ). Other people do well on Wellbutrin ( Bupropion ). Melatonin also helps many ( like serotonin a neurotransmitter ). And a well-followed through sleep hygiene is very important - like avoiding electronics or alcohol before bed, going to bed roughly at the same time every night and getting up around the same time as well, sleeping in a dark and quiet room if possible ( that of course will not be possible with that beautiful baby girl of yours!!!! )

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