StayAtHomeMom

I think your BP just runs low. Some people are that way. What is your HR rate numbers?

Mine was to rule out MS as well.

My neurologist is my POTS specialist. He didn't even do the normal neurological exam. Went straight into what tests have you had done and ordered retests and new tests. I wasn't so sure of him at first because he spend so little time with me but since seeing him my life has definitely improved.

My hubby has "mild" sleep apnea. His event were 14.9. 15 makes moderate. He has a cpap. He hates it. He actually hasn't used it in about a year because he sleeps so badly on it. He is due to go back though and try the mouth guard thing. His sister also had it. Really bad. They took out her tonsils and adenoids and she no longer has sleep apnea. People I know that use the machine are about 50/50. Some love it. Some hate it. Medicaid usually pays on the machine for a year and then it is yours. But you have to use it that first year or they will stop paying on it. Thought that was an interesting insurance quirk. Be close and friendly with your medical supply store though. In the beginning it may be rough trying to find a good fit for the mask.

Stick with the neurologist. The HR change is what defines POTS. You could be normally that low or your blood volume could just be that low. Are you drinking lots of water and eating lots of salt?

My son and I both have had "rapid gastric emptying" for the last few years. At first I thought it was a food allergy (we have a family history) but I can't pinpoint one single thing that sets it off every time. And since I started my keto diet it has been few and far I between now.

Have you tried seeing a chiropractor?

By the way, your test sounds exhausting. I am glad you made it through in one piece 🎉

OI is a symptom of POTS. But elevated HR is not a system of OI (that I know of). Can you see if your doctor can give you the results over the phone if it takes a long time to get in? My cardiologist called me a few days later to let me know I was right, I had POTS (I had to bring the possibility up and request they test it). He then called in a Rx and seen me a month later.

The MRI, what was it of?

No underlying cause yet. Because I belive my oldest son has it as well it is going to be something heredity. I am waiting for his TTT appt to confirm and then do some more digging. My symptoms are manageable. Most days are fine except for days I do too much and the days near and during my cycle. Without my meds I am d*** near useless. With them I can manage 20-30 hours a week at work plus cooking dinner most nights. When I first got sick it was rough but I have learned my triggers, limits, and the meds definitely help.

My insomnia has lessened. I am still up to midnight or later most nights but I am up no later than 9:30. I refuse to take a nap no matter how tired I am. Having the schedule helps.

The only time I have had that was when I was at the dentist before my POTS reared it's head. What is your HR and BP during these episodes? And have you been tested for hyperPOTS?

I agree with the tachycardia making fatigue worse. If I do something that raises my HR shortly later I am so exhausted I can barely move. Sometimes it is only for 30 minutes other times it is most of a day.

Out of curiosity do you have bald patches or just thinning hair? If it is just thinning try Doo Gro. It is a black hair product that I used to use to help thicken my hair. I used the mega thickening condition once a week. My hair hadn't grew in length for years and in six months it went from the middle of my back to my hips. They have a whole line.

I would say the same thing. Hang in there. It does get better. I am 3 years in and I am loads better than I was those first few months.

The treatment for MCAS is zyrtec and Zantac. Something about them both blocking histamine. Not sure. I won't risk trying it considering the issues I had with side effects when they had me on both prilosec and Zantac. Curious have you tried the xyzal yet? I used to take zyrtec but I love my Xyzal now. It is like a super concentrated zyrtec.

Is it true panic attacks or just POTS? Sounds like you probably had it really rough to get a POTS diagnosis.

If I remember my research correctly I remember seeing something about Lyme and coinfections being really hard to really get rid of. It might be more of your underlying is lyme's and your POTS flares because of it. Do you see a "Lyme literate doctor" ?

I take both a beta blocker and midodrine. What is your normal BP without meds?

Did your doctor prescribe anything to help you stand so your HR doesn't jump around?

Lightheadness or dizziness? Lightheadness I drink vitamin water. Maybe some extra salt if I am craving it. Dizziness I use dramamine. It is an over the counter motion sickness pill. Not sure if it is safe while breastfeeding but half a pill helps my dizziness really quick. Luckily I haven't had too much issue with that symptom this last year. Currently I personally take midodrine and metoperlol and that seems to help me function most days. Honestly my metoperlol was my miracle drug and then the midodrine was added by my specialist and that helps symptoms I didn't realize were bothering me til I started taking it. By the way, congrats on the new addition. I am grateful my kids are older but I would never trade their younger years. Watching my boys grow to men is truly a wonderful sight. Hope you feel better soon.

The 24 urine test could have been a urine catacholmine test or a sodium test. Maybe something else as well. I agree anxiety is exhausting. My Beta Blocker lowers my HR about an average of 20 points standing. Lowers my BP about 10 points. And my midodrine brings my BP back up to normal. Everytime I have had both medications in me and my BP checked it was normal. Sometimes it is just balancing the medications. My Beta-blocker helps my tachycardia and heart palpitations, where the midodrine helps with the massive fatigue that sets in when I am upright. I imagine it helps with blood pooling as well. Not sure. All I know it is a vasoconstrictor that causes my scalp to tingle (it is a little weird side effect but I don't mind). Have they given anything for you to try for the dizziness?

A nerve conduction study is a slightly painful test where they run electrical current through your nerves to see if there is damage. I have heard it used to check for carpal tunnel syndrome and diabetic Neuropathy. My specialist did it all over to see if I had nerve damage as that can cause POTS. If your specialist thinks it is adrenaline causing your symptoms did she do the urine catacholmine test? Have you seen hyperPOTS symptoms? I have seen some types of tick-bourne illnesses can cause POTS but without a test confirming that I would be leary. When I first got sick they were diagnosing me with stuff based on symptoms instead of tests. Asthma, allergies, GERD... then give me the medications to try. I had a lot of bad reactions to them. So after my last hospital trip I refused medicine unless they could prove I had something before taking it. In my research it seems like BP can pretty much do what it wants depending on the type of POTS you have. The biggest thing is the HR change that sustains as you stand, plus some symptoms to go with it. People with hyperPOTS have BP that rises. Mine stays the same. And I have heard of people that theirs will drop. And it seems like doctors each have a differing opinion if that means you have POTS or not.

Have you ever had a nerve conduction study done? Seems weird your specialist would try to reverse damage if it isn't actually damaged. As an FYI there is no cure. Only symptom management. BUT if you can find your underlying cause and treat that then your POTS may subside. POTS is not a disease of itself only a cluster of symptoms. That is why it is a syndrome.