Birdlady

5 hours ago, Pistol said:

@Birdlady I developed generalized joint pain at the same time as my POTS became disabling and my autonomic specialist said that many POTS patients complain baout this symptom. My joints felt horrible every morning and remained stiff throughout the day. It would only get better if I moved. I was put on Plaquenil and after a few months of taking it I no longer have these joint problems!

Thank you for this info. As I'm getting older, my back and hips are definitely hurting more especially while I sleep. Ugh! 

54 minutes ago, MaineDoug said:

Hi Birdlady,

my hands get numb, not particularly in the morning though. I find it happens in the afternoon or especially if I’m stressed.

Of course with our Biologic clocks all messed up, do our bodies know when “morning” is?

Mine is immediately upon waking. My hands are numb and have no strength in them. I have terrible back pain and stiffness. Both usually resolve about the same time after I get up. May not be POTS related.

Sarah I totally agree. This forum is incredible. Even though I've been on here a long time, there's so much information already here that can be found through the search function. I was curious if anyone else had numb hands when they wake up in the morning and sure enough found someone talking about it too! haha

On 3/6/2023 at 10:36 PM, Sarah Tee said:

I know you all know it already, but I continue to be amazed at the useful information a person can dig up here.

Time after time, I have a thought or start to follow a lead, then find a great discussion of the very topic here on DINET from ten or twenty years ago.

Or I luck onto a discussion here, and it leads me to something useful to bring up with my specialist.

Hey! I was on fludrocortisone and desmopressin many years ago. 

For my POTS it did not help me unfortunately. It just made me present like a HyperPOTSy with my BP going up into the 140's. 

With desmopressin you really have to work with your doctor and get blood draws to check your sodium level. You can't just constantly drink water on that med since it makes your body urinate less. Fludrocortisone and salt intake may help, but it is a different mechanism at play with desmopressin.

I can no longer take fludrocortisone because my doctors are concerned it may have caused osteoporosis prematurely in my 30's. I'm skeptical of that, but I have asked about it on here and apparently there is some research that suggests it is a possibility.  I know some get a headache on fludrocortisone, so it's all very individual. I personally never had that problem on it.

This is only my experience and you may not have any of these issues. I know there are plenty who get help with fludrocortisone and/or desmopressin!

I'm glad that is helping you. Do you have PEM (post exertional malaise) with your dysautonomia? 

Thought I'd follow up on this. I had a telehealth appt with my cardiologist in August 2022 and I brought up the echo report. He had not seen that on the report. He said that is really weird because I don't have any other issues (left ventricle dysfunction, EF is preserved) that generally would cause enlargement. I guess there is some concern of the accuracy of that measurement on echos. We may do a cardiac MRI this year or next to see if the echo was accurate.

Apparently athletes can get this. I'm not an athlete but when your heart is always racing, it makes me wonder. I'm on a low dose of a beta blocker again since last May. I just cannot live with the insane heart rates all of the time. EP will be mad at me, but I can't live in his fantasyland. 

My husband has this. He has severe multiple chemical sensitivity with his chronic fatigue syndrome. He reacts to things that I don't even notice. 

Have they ruled out seizures? My goodness I hope the doctors figure this out soon. Fainting that many times in a day is completely life altering. I'm so sorry.  

Glad to see you've had such improvement! It's amazing when you find something that is really helping and makes positive changes to your quality of life.

My glucose levels are not as high as yours, but I had a similar issue! My A1C was normal, but I was getting weird glucose spikes and my fasting was high in the morning no matter what I ate or did. I guess maybe it shows that single test's limitation?? I wouldn't be surprised if it is dysautonomia related.

After seeing your glucose threads, I bought some more glucose strips to test. For some reason my glucose levels have been good again on their own. I haven't done anything differently except change the beta blocker I was on. Not sure if related. Instead of acebutolol, I'm now on nebivolol (bystolic).

I question that POTS can be cured at all, but I've gone down both routes. If you go the natural route every single doctor appt, test and supplement will likely be out of pocket. The one GI test recommended to you several posters above is $500. It could cost thousands of dollars just getting the tests done and then you run around forums, Facebook groups looking to understand the results and trialing expensive supplements. If you are doing well on midodrine and ivabradine, then I don't see a reason to change it. 

Some people have an idea that somehow prescriptions are bad, but supplements are good. It doesn't work that way IMO. Natural does not mean there are no risks involved in trialing them. Too many wrongly think that since it's an herb, vitamin or something 'natural' that there aren't side effects or potential problems. My husband was permanently damaged by a supplement. 

I personally would think it is alleviating inflammation in the body. Just my opinion of course.  Long term steroids are not good though. They do a lot of harm with glucose levels, bone health and immune function. 

19 hours ago, MTRJ75 said:

The best advice I could give is if she's considering disability, try to do it while you have enough work credits within the last decade. I waited too long and let some work credits lapse and while I was eventually approved for disability, I'm getting much less than if I had done so five years earlier. 

And you're right, most people without the experience have no idea. She has no idea how lucky she is to have at least you in her corner. I still fight with family member on a daily basis about the things I'm not able to do. 

MTRJ75's advice is spot on.

Your daughter may want to call the SSA to see if she has enough work credits. You also want to find out her "Date Last Insured". Not sure if this info is available online or not. This way you know what you are up against. If the date has already lapsed, then she will only be able to get SSI. If the date is rapidly approaching, then you want to seriously consider applying for disability if she cannot find a job that works around her limitations.

I also waited years to apply for disability and once you lose work credit, instead of SSDI, you get put on SSI which is currently $841 a month. It goes up with cost of living increases but it's never enough to survive on. It's a strict system where you cannot get any help from people without money being taken out of your monthly check. There's tons of rules and regulations. 

I really feel for you and your daughter. She's so blessed to have you as a mom caring for her and listening and understanding that these are real limitations and not her just 'being lazy' like soo many people believe. 

Yeah having the CGMs are amazing. Will be curious if that low happens again or not. I'm almost certain that I get lows while I sleep too from time to time because I overheat and wake up sweating or shaking at times. 

I believe there is a connection to POTS/dysautonomia with glucose issues. There was a thread started last year about it.

Sorry to hear that the endo was not helpful. I really just don't understand why they would just refer you back to the PCP. I agree that we have to collect data ourselves on apps and programs that they cannot deny. Sadly my EP would actually use it against me as another clue that I'm just a neurotic female who needs to exercise. 

I haven't been checking my blood sugars again because it never made any sense. It seemed like mine would go high at times despite what I was eating. My A1Cs are all very normal, so instead my doctors just pooh-poohed the numbers I test at home. Have they sent me to do a formal OGTT? Of course not. I still wonder what magical age I'll have to be when  doctors start caring about the health of POTS/dysautonomia patients. They didn't care in my 20's and still don't seem to care in my 30's. Maybe 50's will be the magical time if I make it there lol? 😉

Glad you are doing better!

4 hours ago, MomtoGiuliana said:

I did find this past discussion.

There may be more.

https://www.dinet.org/forums/topic/3690-warning-osteoporosis

 

Ty! Interesting to see that Dr Grubb was stating this in 2005. 

Midodrine can cause tingling, pins and needles feelings. It was the reason I couldn't take it. It felt like someone was brushing up against my skin or a hair was tickling me all day long. It caused me to twitch and feel sensory anxiety. Hopefully your doctors are helping you out since this post is a couple weeks old now. 

I know many POTSies take florinef (fludrocortisone) on a daily basis. My PCP is blaming the sporadic use of fludrocortisone over the past 10 years on my lowered bone density. Are any of the POTS/dysautonomia clinics/doctors seeing an increase of osteoporosis in people who are not going through menopause? I'm still in my child bearing years. Are they checking for this in their patients? Is there something I can give to my doctor? I'd imagine POTS itself is causing the bone loss because I can't do weight bearing exercises or stand for long periods of time. 

If there's another thread about this, you can just link it here. I'm not feeling well enough to do a thorough search today. Thank you!

I saw this on twitter today and wanted to share. Here is the discussion and direct link to the study.

https://link.springer.com/article/10.1007/s10286-022-00863-4

Worsening Postural Tachycardia Syndrome Is Associated With Increased Glucose-Dependent Insulinotropic Polypeptide Secretion

https://www.ahajournals.org/doi/10.1161/HYPERTENSIONAHA.121.17852

I know with a lot of the testing that we get done, it is always while fasting. No one is ever really looking at us in real life situations. We have to self-report to doctors what we are experiencing and I'll be honest, my doctors don't care at all. They are always downplaying everything I tell them. 

I'm glad that people are studying this further.

Many years ago I had my catecholamines tested via serum during my TTT. Norepinephrine was above 600 when upright. 

I recently had my urine catecholamines tested and they were below lab range which they say is 'normal'. They are only looking for high levels in urine, but clearly it is different since those high upright serum levels are not showing in the urine for me. 

Sounds like really great news!

Previously I had Pfizer with zero side effects other than a sore arm. I got my Moderna booster yesterday. Woke up feeling very dehydrated and chills/fever (101). As the day went on I felt worse and got very tired/heavy, lightheaded and more tachycardia when standing. I ended up taking a few hour nap and woke up super overheated/lightheaded. It is definitely making me more lightheaded, lower bp and higher heart rate. Not pleasant, but also solidifies that I really don't want to get COVID either.

Finally got some soup and fluids in me and was able to get cooled down without chills, so I'm hoping at least the POTS symptoms will calm down a bit. Fever seems to be coming down as well. For me having a fever with POTS is really awful. It's just hard when you have chills and are overheating at the same time. lol

6 hours ago, cmep37 said:

Do you ever wonder if you'd been diagnosed earlier whether you'd have responded better to treatment?  By the time I was diagnosed I'd had severe POTS for about 15 years (after standing about 5 minutes my HR more than doubles to 140BPM+, on my TTT I reached 172BPM at 13 minutes before the doctor got worried and decided to stop the test as there was no sign of my HR slowing) - I think my body thinks this was how things are supposed to work!  I have failed every single med I have tried - Fludrocortisone (no change), Midodrine (great for 4 months then I developed rebound hypertension and had to stop), BBs (lowered HR a little but dropped BP too low), Ivabradine (lowered HR better but gave me bad bradycardia in the afternoons and evenings).    I often wonder if I'd been prescribed meds when I was first symptomatic if they would have worked better or if I'd still be in the same boat!  I guess I'll never know...

Same old story isn't it!  My cardiologist has basically given up - he says I just have to live with it.  I'm seeing him again in a few weeks and am considering pushing him to refer me to one of the big London hospitals but maybe that's a waste of time - I honestly don't know.  I am just so fed up of always having to be the one driving things and suggesting things that he usually shoots down - he won't let me try Mestinon (doesn't understand how it works!) or IV saline (risks of infection too high).  Is it possible for you to get a second opinion on the left atrium enlargement?

I honestly don't think anything would have been different with treatment response if I was diagnosed sooner. It first started when I was in my junior year of high school after having EBV. I had to quit band/marching band. Couldn't do it anymore. I was so weak, tired and fatigue while standing. After high school, I was a little better, but it got really bad again in 2005.

I've been seeing the same cardiologist since 2012. It's nice to stick with someone who has seen you for a long time, but he doesn't have any magical ideas and has told me there is no miracle drug. He flat out told me he isn't god and can't fix me. I do appreciate him saying that to me. I now see him once a year. I have stuck with him and he has been a blessing to me with filling out forms for social security and other things.  He is the one who ordered the echo. This doctor will give me any med I want. Midodrine (which was terrible for me), any beta blocker etc. He has suggested ivabradine which I told him I will try the moment I am past childbearing years. 

But since this cardiologist moved offices so much in the past 3 years, I started to see an EP that is about 5 mins away from me. This guy doesn't believe in using any medication for POTS. He says they don't work. He said midodrine can be helpful, but he hates using beta blockers in POTSies because it just causes too many other issues. It diminishes stroke volume or something like that (maybe I'll need that diminished stroke volume lol) and makes the sinus node even weaker. He got into the details about it and why he doesn't like beta blockers.

I don't think I can bring myself to seeing a 3rd doctor. Maybe I can put in a message to the cardiologist's nurse and just make sure he saw the left atrial enlargement. They were the ones who called me and said everything was normal. See even writing that out, I sound like a crazy person. Of course he saw it on the report.

18 hours ago, cmep37 said:

At least you still have a sense of humour though....!   I'm about 30 years in - first had mild symptoms as a teenager, which worsened until I had a complete collapse in my mid-twenties although I was only diagnosed with POTS and hEDS 5 years ago when I was 38.  I'd seen about 20 consultants from a wide variety of different specialities over the years, none of whom ever suggested POTS or HEDS as a possibility - instead they told me I had ME/CFS, fibromyalgia, depression, anxiety, burnout etc etc.  I ended up diagnosing myself after reading an article online and realising that I had every single symptom of POTS which then led me to hEDS!

Yeah I diagnosed myself too in 2009. I walked into the EP's office and said, I have POTS. I want tested. lol He thought I was nuts, but I wasn't wrong...My first TTT I was already on meds they use to treat POTS. He also put me on a saline IV! I seriously think he was trying to prove me wrong, but despite all of that I still tested for POTS within 1 minute of being tilted. Unfortunately the doctors I have seen over the years don't know what to do with me, but also don't seem interested in digging any further either. After a while, I got disinterested in it too, so when something like moderate left atrium shows up, it makes me wonder again. My EKGs have been saying possible left atrium enlargement for a year if not longer. Apparently if nothing else is wrong with your heart, it is ignored.