POTS Newbie Questions

[Neomorph]

Hello everyone! I've posted a couple of times here but I have a couple of questions that I'm hoping you all can help answer.

I was diagnosed with POTS in May. I was working as a veterinary assistant (some of you may have seen my post wondering if I should quit my active job - I did). The last couple of months I was working, my heart rate was through the roof, my fatigue was awful, and I would hobble around, stiff and sore. I am much improved since taking a break. However, I have also been wondering if I have some type of hypermobility/connective tissue disorder. My joints often crack and pop (I'm only 24), I get extremely sore and stiff after any type of physical activity, and I have gut issues (I suspect IBS-C). Not all of my joints hyperextend but some do, especially in my wrists and elbows. I've read that these can be symptoms of a hypermobility condition. Do any of you have POTS and hypermobility? Are there any supplements I could add that you have found helpful? I have a doctor's appointment on the 18th of August with my GP, and this will be my first time seeing him since being diagnosed with POTS. I want to bring up everything I've noticed, and questions I have, but I'm a little worried I won't be taken seriously. I'm not even sure if there's anything more my doctor can do for me. Is there anything I should bring up or request at my appointment that could help? 

Supplements and medications I'm currently taking:

Magnesium Glycinate - 665 mg daily

Sodium - liquid IV/salting food, as much as I can handle daily

Omega 3 - daily 

Probiotic and digestive enzyme - daily for gut health

Propranolol - 10 mg as needed for tachycardia (honestly I don't take it very often as it disrupts my sleep)

Thank you for any insights! I am still very new to the dysautonomia world. 

[Jyoti]

I have hypermobility and POTS.  It is not an uncommon combination at all, sadly.  Have you tried to assess yourself for Ehlers Danlos or hyper mobility?  https://www.ehlers-danlos.com/assessing-joint-hypermobility/   My diagnosis is 'hypermobility spectrum disorder' which I think is fairly new--last couple of years--and takes in those of us who don't quite meet the requirements for EDS but have significant hypermobility.  It sounds like you might indeed have  hEDS, which would be a good thing to know, to pursue.  

 

[Neomorph]

@Jyoti Thank you for your reply! I just took the assessment, but based on those joints I'm only scoring a 2 - maybe a 4? But I'm also reading that people can have hypermobility in other joints. My hips often pop out of place and go back, and sometimes it really hurts when they do that, but I've never full dislocated any joint. My shoulders and neck are constantly knotted up and I suffer from frequent headaches. My ankles pronate if I'm not wearing shoes. And I am frequently constipated and suspect something is wrong with my gut motility. I bruise easily. I guess I'm hesitant to say I have hypermobility because I don't quite fit what the assessment says? I'm not sure.

[Jyoti]

It is worth it to check out your Beighton score, I think, but it is important to note that even if you do not fulfill the criteria for hEDS you can still be hyper mobile or have a connective tissue disorder.  Not being anywhere adjacent to a physician, I couldn't say based on your symptoms--of course---but they (the symptoms) would surely make me suspicious of some sort of hypermobility or connective tissue problem.

Have you read anything about CCI and AAI?  This is an interesting presentation 'connecting the dots' between dysautonomia/POTS, connective tissue problems or hEDS, MCAS, gut issues, etc. : https://www.ehlers-danlos.com/wp-content/uploads/2022/12/2018-EDS-Webinar-Chopra.pdf  It might give you some food for thought as you plan for your doctor's visit.  

I'd add that my Beighton score--done on my own--was 5.  When an orthopedist did it, he got a 7, seeing some hyperextension that I didn't recognize of could not see accurately, so it is surely something to keep in mind.   In the end, maybe what matters is knowing that you are hyper mobile and may need to stay aware of how that impacts you.

[Neomorph]

@Jyoti I have not really explored those sources yet! Thank you, that gives me something else to look into. I made it through slide 153 of that presentation - and I will go through the rest - but now I'm highly suspicious I have more than only POTS. That is also good to know that maybe my Beighton score is not as accurate as it could be. May I ask, do you have any tips on how to lessen your hypermobility, or POTS, symptoms? I know of course I should consult my doctor before trying anything, but I always like to hear how people experiencing these conditions cope. Thanks again for the great resources. 

[Jyoti]

8 hours ago, Neomorph said:

I'm highly suspicious I have more than only POTS.

It is not the case for everyone, but a lot of us have a particular 'suite' of conditions that seem to go hand in hand.  I know I started off focused on ME/CFS and then realized I had POTS and that POTS was the origin of many of the symptoms I had attributed to ME.  Then I discovered I had cervical instability and hypermobility.  I guess the deeper we dive, the more it is possible to find treatments that might help.  For instance, I would never have considered neck traction for ME in my earlier understanding of it, but it really helps me a lot when things get bad.  So while I am addressing an issue related to hypermobility, it impacts all my symptoms.  Same with MCAS.  

I am guessing you have already tried the standard first-line options for POTS--lots of water, salt (like Klaralyte or Vitassium), compression garments? There are a number of meds for POTS that might be worth trying--if propranolol is keeping you up at night and thus, you don't take it--that isn't a big help.  You might ask to trial some of the others.  Or one of the others since drug-shopping usually doesn't put doctors in a  receptive mood.  I and most people here have tried a bunch of them which either did not work or had unsustainable side effects.  Still..with determination and diligence, a lot of us have found something that adds to our well-being. 

I would also suggest that you consider a Garmin Vivosmart watch.  It keeps track of stress, energy levels and gives you a continuous read on heart rate.  I find it to be extremely helpful in managing POTS and ME.  I used to know when I was exceeding my limits, but usually was not able to respond fast enough.  With the Garmin, I can always tell if I am getting near to the edge and adapt what I am doing accordingly.  That doesn't really 'treat' anything but it helps me to avoid some of the flares or bad patches by pro-active resting when needed.  Which overall, makes life a bit better.  

There is a lot to learn and it isn't always easy with brain fog!  But keep asking question and reading and soon enough, sad to say, you too can be an expert!

 

 

[Neomorph]

@Jyoti It's very interesting, if unfortunate, how having one system out of wack can cause so many seemingly unrelated issues within the body. The deeper I dig, the more I have moments of "wait, that's not normal?". I'm definitely learning a lot about myself and chronic conditions. 

I am doing the basics like increasing salt and water intake. I have compression garments but unfortunately, I rarely use them as I have sensory issues with tight clothing. Honestly I think the biggest thing for me was quitting my veterinary assistant job. Working 10 hour shifts, not having time to take breaks, working in emergency situations, absolutely wrecked me. I couldn't fully recover over the weekend, and that's what made me look into getting a POTS diagnosis. I've been resting and doing light work for a couple of months now and I feel much better. I'm now trying to address all of my symptoms and slowly transition to finding a POTS appropriate job. I want to take my health more seriously. 

I think I will ask my doctor about another medication for the tachycardia, and maybe something to improve gut motility. That is probably my next biggest symptom. Thank you for your input, I'm feeling better prepared for my appointment more informed in general

[Pistol]

13 hours ago, Neomorph said:

Honestly I think the biggest thing for me was quitting my veterinary assistant job.

@Neomorph Unfortunately this was one of the biggest steps I had to take to improve my quality of life - after - POTS  - diagnosis.I am glad you realized that taking this drastic step was necessary - I pushed through work for years and therefore made things a lot worse. 

When looking for a new job I would like to suggest that even a desk job can be stressful, and it may be a good idea to consider being able to get up and move frequently - sitting for long periods of time triggers symptoms for me just like standing or walking does. 

13 hours ago, Neomorph said:

I think I will ask my doctor about another medication for the tachycardia,

What med do you take right now? Most doctors start out by prescribing beta blockers. Each person is different and we all respond differently to meds but I have tried several beta blockers and found the greatest relief of PVC's and tachycardia from Carvelidol, which has both beta-and-alpha blocking properties. 

[Neomorph]

@Pistol I am also glad I recognized the job was ruining me! Unfortunately, my parents were not thrilled when I quit my job, and that continues to be a point of contention. I'm trying to take the necessary steps to get back into the workplace. I'm working part-time with a CEO of a start-up and also pursuing a Google Digital Marketing certification. A lot has been going on since my diagnosis! Ideally, I would like a work-from-home job, so that I can be near a bathroom, snacks, water, supplements/meds, etc, and not have to explain why I'm getting up for the 15th time 😂 That's the hope, anyway. 

As for meds, right now I am on Propranolol 10mg taken as needed before stressful events... I was actually initially prescribed it because I was having stress colitis during my senior year of college. This was before my POTS diagnosis. My doctor thought if we could calm my racing heart before things like presentations and tests, I wouldn't have to run to the bathroom with diarrhea. It's weird, now that I'm not in school, I rarely have diarrhea and I'm mostly constipated. My doctors said I could keep taking propranolol as needed for my tachycardia due to POTS. But I can't really predict when I will need it, and taking it at night disturbs my sleep, so I don't take it much at all. Unless I have a planned meeting, I take it to help me calm down. I wonder if I should be on something more consistently, to prevent spikes in my heart rate. Does Carvelidol give you any side effects?  

[Pistol]

13 hours ago, Neomorph said:

I wonder if I should be on something more consistently, to prevent spikes in my heart rate. Does Carvelidol give you any side effects?  

From all of the beta blockers I tried Carvelidol is the one I tolerate the most. Other beta blockers caused slow HR or other unwanted side effects, such as sleepiness, or they did not affect me at all. Of course we are all different, and we respond differently to medications. 

You mention that you take a beta blocker as needed - I have found that this is not the best solution for POTS patients. Dysautonomia is an IMBALANCE of the ANS, so in my experience taking medications on a regular schedule is more effective, as well as following a daily rest-and-activity routine. 

[Neomorph]

10 hours ago, Pistol said:

 taking medications on a regular schedule is more effective

Yeah, that definitely makes more sense in my mind! I will ask my doctor about getting on a more regular schedule, and with a new medication. Do you find that caffeinated beverages interact with your medicine? I think coffee and propranolol make me loopy, and I'm wondering if I should go decaf. 

[Pistol]

@Neomorph I have not noticed any interactions with caffeine. A lot of people on this forum do not tolerate caffeine, so if it causes you issues decaf may be worth a try. 

[Sarah Tee]

@Neomorph, POTS and other types of dysautonomia can cause digestive problems with or without hypermobility. It’s something you could bring up with your autonomic specialist. There are also specialists in neurogastroenterology (How do they fit that on their office door?) who can look at autonomic problems affecting the bowel.

I am glad you are away from that job. I have to say I was worried about you!

If there’s a Dysautonomia International or other Facebook support group for the region where you live, that can be very helpful for finding specialists, physiotherapists, etc. nearby.

[Neomorph]

@Sarah Tee So, funny you should mention "my autonomic specialist". I had a doctor's appointment today, but just with my GP. I don't have an autonomic specialist. I tried to tell him my concerns, predominately my fatigue and digestive issues, and that I wonder if I could have hypermobility exacerbating/contributing to my issues. For fatigue, he recommends a sleep study (I guess that's a fair first step, but I figured I'm fatigued because I have POTS. He wants to check for sleep apnea). For my digestive issues, he basically recommended fluids and fiber, and if I still don't become regular, then he'll refer me to a GI specialist. I've been chronically constipated for a year now, doing fiber, supplements, fluids, everything. Still cannot reliably have a BM and I feel so sluggish. I think I need to see a GI specialist *now* xD Oh well, I suppose that's the US medical system for you. I also just did fasted labs today and everything looks normal. Of course. 

Thank you for your concern! Leaving that job was honestly the biggest improvement, still not quite 100% of course. 

I have joined a regional dysautonomia group! I will definitely ask around about specialists because I don't have any in my corner yet. 

Thanks for your comment, I hope you are doing okay!

[Sarah Tee]

@Neomorph, I hope you can find an autonomic specialist soon. They tend to be pretty switched on, and they know that their patients have already tried all the “usual fixes” for years prior to seeing them.

If your GP or the sleep specialist are open to input, they coukd watch this lecture:

https://vimeo.com/357910876

It is a CME (continuing medical education) lecture, so they might even be able to count it towards their professional development. I’m not sure how that works, but it’s a US lecture so it would have been officially registered somehow for US doctors.

I have started a new treatment. It turns out my problem (not POTS) is vasoconstriction reducing the blood flow to my brain. So I’m taking calcium channel blockers to relax the arteries. It is working but of course there are side effects. The other thing that works is prednisolone (steroid), although I got those for an itchy rash and discovered that they helped my OI by accident. Seeing a rheumatologist this week after a year of asking about it (!).

Good luck with your local group.

[MikeO]

On 8/18/2023 at 3:17 PM, Neomorph said:

I have joined a regional dysautonomia group! I will definitely ask around about specialists because I don't have any in my corner yet. 

This should be helpful to find resources that maybe available in your area or at least for a provider to see or to avoid.

Most folks with POTS take a low dose beta-blocker as it helps to take the edge off the tachardia. I don't have POTS but i also take Carvedilol and tolerate it well.

What also helped me is over the last 2-1/2 years is i took the approach of only making or working on one change at a time. I have found when too many changes are made at one time (for me anyways) it's hard to identify what works and what does not.

so my first focus was to do a complete med change. we started by stopping all my old meds and worked on the beta-blocker, then added the CCB and then the ranolazine. whole process took 6 mo before we got it right and me becoming stable with the drugs. i also have done the same with foods (still working on this one) and what affects my fatigue and every other stuff i deal with. What this has left me with is my transient drop in blood pressures (source of syncope) that can't be explained so my doc is working on getting me into a autonomic testing clinic (not hopeful but have my fingers crossed) 

What also speed up the process was me logging vitals and food eaten and activities. I actually spent two months taking bp's and heart rates almost every hour and looked what i was doing and it did show a pattern as to what was affecting me.

Good luck with your sleep study (i think it's worth looking at) and finding a specialist.