sideofsalt

Mine was brought on by pregnancy but didn't appear until a year after weaning my child. I did suffer from a bronchitis a couple of months before the onset of symptoms though, so it makes me wonder about a viral connection as well.

How do endometriosis and appendix related issues present? What are the symptoms and how are the two tied together through diagnosis?

Good questions and it's good to examine the use of hormones. I used OCPs for a few years on and off years to control PMS pain and suffering before POTS ever came into the picture but they eventually gave me migraines. I did very well on them otherwise. Fast forward a few years and migraines became a monthly occurrence again in my 30s but not a big deal. After I had a baby and after weaning, I developed migraines once again and developed POTS. I figured out that POTS was most obvious around my cycle so I tried NuvaRing but developed severe migraines and high blood pressure a few months into it. I did great for a couple of months and hardly had POTS, but it seems like I can't win with hormonal contraceptives. I'm currently not taking hormonal contraceptives and found that after my thyroid was low earlier last year, my menstrual (and therefore POTS) symptoms became worse and improved after I got my thyroid to normal levels again. It's worth checking out the thyroid route because hormonal contraceptives can change your thyroid function. I too wonder if I altered my chemistry too much with OCPs early on and deep inside I feel that no synthetic hormone therapy is right for me. I hope you can find balance/relief whatever you decide!

Fantastic news!

I have had a few days of minimal symptoms which has been terrific but that changed today. Typically, an hour or two after I eat lunch, my POTS symptoms decline and I can get around to run an errand or two. But today, I was shopping for 30 minutes and could feel an all-over muscle fatigue and drained feeling which I typically attribute to hypotension. Then, my left leg became cold and a little numb which I have experienced before on and off since my POTS dx a couple of years ago which I attributed to a vague dysautonomia symptom. Then my right leg became a little cold. I took some midodrine to see if I could offset some of this and it worked a little. A few hours later, I was preparing dinner and I could feel joint aching, muscle aching and cramping throughout my lower body and a little in my upper ribcage. The aching and cramping intensified through dinner and sitting down didn’t help at all. My legs felt like they just completed a 10-mile steep incline and decline mountain hike (which I’ve done before). About an hour later, the pain gradually subsided and my feet, knees, and a little bit of my cheeks were warm, red and flushed. I did not detect swelling in those areas. Right now, a couple of hours later, my lower legs and feet are throbbing and are slightly pink at the joints but not swollen.

Randomly, I’ve had throbbing shins at night that disappear in the morning but not across such a wide body area as today.

I see so many of my symptoms post-POTS dx through the lens of POTS but I understand that not all of the new symptoms I experience can be blamed on POTS. What goes through my mind is arthritis or mast cell, and I wanted to ask if anyone has experienced something similar and what road did it lead you down? Thanks in advance.

Welcome! My story is very similar. Did your symptoms start one year after weaning your child, or immediately after weaning your child whom you nursed for a year? In my case it was the latter. As soon as I weaned her and got my period back, I started having weird episodes, which like yours, were mostly to due with "that time of the month" or after flying. When I became pregnant with my second, things got a lot worse, but at least now I know what I'm dealing with and have learned to manage it a lot better.

Hi shan1212, sorry I didn't see this sooner but to answer your question, yes, my symptoms started about a year after weaning my child! Right after weaning, PMS symptoms started flaring up more intensely month after month, then about a year later, bam! my first POTS episode. My episodes are mostly driven by hormonal fluctuation, it seems like estrogen. I'm very cautiously considering a second pregnancy. I'm happy to hear that you were able to navigate POTS through a second pregnancy, it is encouraging. How did POTS present for you during/after your second pregnancy?

I am in my 6th day of antibiotic treatment for H pylori and I noticed that my blood pressure has changed.

Overall, my blood pressure is hovering around 108/75 - for me that is vast improvement. Pre-treatment, I tended to hover around 95/65. My doctors say that there is no correlation between antibiotic use and blood pressure. I broke out my BP cuff because I was feeling like I didn't need as much midodrine as I did before.

Has anyone else noticed blood pressure changes while on antibiotics?

Hi and congratulations! I had an endoscopy and colonscopy done a couple of weeks ago. I was just dx'd with H. pylori and am 3 days into the triple therapy. I understand that there are less invasive tests (breath and blood test - antigen, I believe), and non-pharmaceutical treatments that you may be able to undertake (a naturopath may be able to shed some light on these). I am considering pregnancy, so I will look out for your posts. Wishing you all the best for a smooth pregnancy and please let us know how you're doing!

thank you Corina!

Thanks momandmore. I will be restarting my probiotics today. I too think that dehydration (now that I've been off the IV since the procedure) is playing a major role in how I feel now. To be honest, I'm not quite as thirsty as I was prior to the procedure but I'm increasing my salt a bit while I try to maintain my normal water volume.

Welcome momandmore! Congratulations on getting a diagnosis. For me, medication type has been a trial and error process, but the dosing has been even more so. I've been fairly stable on my prescribed regimen once I got the dosages right. I was lucky to see a doctor who specialized in dysautonomia.

Hi Cleo, I just posted about my recent experience with anesthesia in the thread below. I tend to be sensitive to some medications but not all. It was the first time since my POTS dx 2.5 years ago and I was unsure how I was going to react. What helped was providing literature on POTS and anesthesia to my doctor as early as possible before the procedure. Also, the day of the procedure, I was prepared to discuss what I knew of POTS and anesthesia at the time with the anesthetist (providing literature again). I also had a relative to help me through the recovery period. http://forums.dinet.org/index.php?/topic/26151-colonoscopyendoscopy-any-tips/

At the top of a DINET page there are links to anesthesia information: http://www.dinet.org/index.php/information-resources/pots-place/pots-useful-links

More information here: http://www.dinet.org/index.php/information-resources/pots-place/pots-what-to-avoid

And even more on Google

Good luck and I hope this helps!

So it has been 3 days since the procedure. The prep actually went well and was uneventful (hooray!), and I felt very confident going into the procedure. An IV was started right away and I was able to discuss POTS with the nurses (and brought some printouts from the DINET website about anesthesia - I think this was a good move). The anesthetist and I discussed how we could be conservative with the anesthesia. Into the procedure, my HR and BP dropped and atropine was used to correct it. However, I had an overreaction to the atropine and my BPMs rose to at least 120 and BP went up to 140s/110s. I woke up into this with some discomfort - my chest pounding and my head ached with the pressure. Later at home, the chest pain and headache would return, waxing and waning. My cardiologist thought I should be seen by the ER to rule out any heart event due to the chest pain and tightness that remained. EKG, chest X-ray came back normal and the ER doctor determined it was more of a skeletal inflammation. I started to feel much better yesterday afternoon. Today, interestingly, I feel my POTS returning. I did not notice it that much since the procedure.

Thanks Katybug, I am feeling pretty good so far and I'm optimistic about tomorrow. Good luck to you Always hoping - I hope your procedure goes well. I go into mine in the morning; they said nothing (not even water) for 3 hours leading up to the procedure! I'll be getting up extra early to get my last broth in, for sure!

Hello everyone,

After much research in this forums and others, I just have to put it out there - do you have any tips on surviving a colonoscopy (and endoscopy) from a POTS perspective? I go in Wednesday morning for both. My doctor has given me the standard prep instructions for the kit I will use (TryLyte I believe). I have put it off long enough, mostly due to my uncertainty with POTS combined with the prep, anesthesia and recovery.

I had a colonoscopy 5 years before POTS hit me and it was so easy. Now, having POTS, I see what a challenge for my body this will be - the rapid elimination of solids while being on a liquid diet, and then being knocked out. I'm armed with broth, Gatorade, juice, and a small amount of Jello (I had a reaction to the MSG that occurs in gelatin a few weeks ago so I'm treading lightly with gelatin). I'm concerned about being super fatigued the morning of. What helped you get through the prep phase?

I have not had problems with anesthesia in the past, and this will be my first time with anesthesia since my POTS dx. I was told I could discuss my POTS and anesthesia options when I get there that morning. I know that choosing anesthesia is left to me and my circumstances, but what would help a POTS patient be better informed on sedation options?

Lastly, I plan on eating as soon as I possibly can after the procedure (of course!). My cardiologist's office recommended I be careful with walking after the procedure due to orthostatic intolerance. What helped you recover from this procedure?

Thanks for any input you can provide!

I would get checked for strep as soon as possible, and second Katybug's recommendation on an urgent care clinic. My POTS was significantly impacted by a strep-like infection I had one Christmas. I didn't get it checked out because I had no other symptoms other than very sore throat and I learned later that I should have been seen right away.

Hi Spinner,

I hear where you’re coming from. I recently had a reaction to MSG and lost 4 days of productivity because of it. It has been about 7 years since a reaction of this magnitude, so I looked more deeply into it. I learned that MSG occurs in many things, including gelatin, which I ate when I had my latest reaction and it occurs in many other foods as well (as free L-glutamic acid) as a by-product of the manufacturing process. I learned a lot about MSG and its many guises here:

http://www.truthinlabeling.org/hiddensources.html

I developed broader food sensitivities a couple of years ago and navigating the fridge on my own was not intuitive at all. Fortunately, I began working with a dietitian right after this and he developed a diet that I've stuck to to this day that helps me to avoid reactive foods and minimize histamine which seems to be the foundation of my reactions to foods. I recommend to all of my friends and family - with POTS or without - to seek a qualified dietitian to define a diet specifically for your needs. In many cases, a dietitian is covered by insurance and you would start with your primary care doctor to refer you to a qualified one (a registered dietitian). My friends who have gone down this path have gotten excellent results, so I can’t recommend this strongly enough. Between label-reading and working with a dietitian, we have been able to avoid most reactions. I also will not be eating gelatin any time soon! I hope you find relief!

franziska, welcome! To add to the previous posts, I would suggest establishing a schedule and measuring out your basic daily needs first. If I had to do it all over again, I would have measured out my water for each day, definitely my salt for each day, and work with a dietitian to ensure you get the right nutrients at the right time of day. This was hard for me because I was never a schedule-minded person, but since we with POTS have to help our nervous systems to regulate, I find I have to adhere to a schedule pretty strictly now. I started working with a dietitian a 1.5 years into POTS, and my water and salt intake were not consistent at that time but I came close to my goals. But, my medications and condition over all improve when I learned to consistently meet those basic goals. Sleep is another big one - I can't say I practice getting good sleep all of the time, because I'm a mom, but when I have a few days' worth of substandard sleep, I tend to feel it and sometimes REALLY feel it. Also beware of reducing carbs in your diet on your own. I have read that a ketogenic diet can bring on or exacerbate hypotension (if I can find the article again I'll post it), and having worked with a dietitian now, I would never attempt a diet change on my own - I would leave that to a qualified dietitian. Food can be your medicine if done correctly. Best of luck!

That sounds promising and congratulations on getting relief from it! Do you know if Northera has the same side effect of supine hypertension as midodrine does?

This happened to me when I stopped my fish oil (I ran out for a couple of weeks) during the summertime.

MomtoGiuliana, that is one frustrating thing about being pregnant - that almost every symptom is chalked up to the pregnancy and not further addressed. I have to admit, this is one of my main concerns about going down that road with POTS. I'm so happy that you had a healthy baby. How did your condition evolve after the first year of being disabled if you don't mind sharing?

Noonoo, I too wish I had that energy again! It was energy I could actually use! The combination feeding idea sounds like a great way to ensure some sleep. But to keep up with the demand, I wonder if that means more pumping? Hmmm.

Thanks for your story, your words are encouraging!

Side of salt, all my info came from mums on a Facebook group who have been through it. My doctor also advised me to feed as long as I wanted and then wean slowly. It keeps our volume up but if we stop suddenly it seems to make symptoms worse. It's interesting that you stopped slowly but still experienced an impact. If I were lucky enough to reach the point of having another child, I would definitely combination feed, that I know already. I think it's the only way to have rest as I found expressing just as exhausting. I'll be thinking of you - let's hope things go our way x

Yes, the exhaustion of breastfeeding alone is concerning to me as well! What do you mean by "combination feeding"?

I seem to have a version of POTS different from most. I felt worst while pregnant (3rd trimester was the worst) and worst of all post partum (probably partly b/c of C-section, loss of blood (had blood transfusion), and also of course sleep deprivation). I stopped bf-ing suddenly somewhere between 3 and 4 months when I was finally diagnosed w POTS and started taking meds that at the time I was concerned were not good to take w bf-ing. I got conflicting advice from doctors and took the advice of the pediatrician and stopped. Stopping suddenly did not make me feel worse (except I remember for the first time feeling depressed--maybe b/c of hormonal changes but also b/c I felt sad about stopping). I felt better within weeks--meaning I was housebound but not so much bed bound. I remained pretty much disabled due to POTS for months after.

May I ask what symptoms you experienced in your 3rd trimester? In my 2nd trimester, I felt a great deal of adrenaline, but it was rarely over the top or unpleasant. I had a lot of energy, so much energy. There were a few times when I felt mildly anxious, but work was stressful and my family was moving houses. It was a stressful time and also an exciting time. Having POTS today, I have a different relationship with adrenaline and now look back at that time as perhaps a pre-cursor to the POTS I would later develop. My blood pressure was always good during the pregnancy though and aside from a recurrent sinus/ear infection 1st trimester (maybe setting the stage for the immune-related POTS), there were no other clues for POTS.

Fortunately, ever since I got the flu shot regularly (about 10 years now), I have not contracted the flu. It's not 100% protection, but it has worked for me. After I got a throat infection post-POTS dx, my POTS and migraines got a LOT worse. That is why I make sure I don't miss the flu shot - if I can avoid further complicating my POTS this way, I get it done.