StayAtHomeMom

10 hours ago, Eraena said:

I went to the doctor last year and my BP was 88/60, but felt completely fine. I'm drinking 80-100oz, and adding salt to things that already have salt. I had soup that had 1,550mg of sodium and I added 1/2 of salt (around 1,000mg). I'm also wearing compression stockings and taking Midodrine.

 

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. 

2 minutes ago, Derek1987 said:

Hopefully they have a better experience than I did with the neurologist. He made me do simple tests like walk in a straight line. Talked to me for 2 mins and left. His doctor records said I was fainting probably due to anxiety. It was a joke.

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?

8 hours ago, yogini said:

Many things can cause diarrhea just after eating including food poisoning, IBS, Chron's disease or lactose intolerance (if you eat lactose).  I sometimes get it from eating cheese.

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. 

8 hours ago, JoshMW said:

head/brain, I could see some of my vertebrae in the images so im guessing they ruled out charai.. I have copies of the scan on my computer. posture does play a role in how i feel, i cant just slump in the lounge otherwise i will get very odd pressure sensations. oh, i also get a runny nose when i eat.. i have so many quirks i forget.

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. 

1 hour ago, JoshMW said:

thanks for all the replies everyone. i was tested for phaeochromocytoma and the result was negative. ive had a lumbar puncture which only showed raised lymphocytes. they were supposed to check the opening pressure but checked it after taking a sample, so i dont know if that makes a difference.. ive had an MRI that came back normal, no vascular defects etc. i experience a lot of pain on my left side specifically; in my carotid artery, but also leg cramps and nasal congestion etc are all predominantly left side. I've had a stomach biopsy which indicated inflammation consistent with celiacs disease, but the blood test for celiacs was negative. i have eliminated gluten regardless, and i will now be eliminating all dairy except for butter (no lactose or proteins). i havent been out of the house for several months now, but i want to get tested for mast cell activation. i think histamine might be playing a role (its one of the only things i havent tested at this point). interestingly blood catecholamine levels were showing as quiet low when i took the test years ago, perhaps my adrenals were fatigued. since then my symptoms have changed and i take tyrosine to eliminate any fatigue.

does anyone here know more about histamine? i have just purchased an over the counter peripheral h1 blocker (fexofenadine) to experiment with.

edit: i should add that my blood pressure is actually on the lower side these days. when i stand motionless it tends to keep dropping, then there is a slight correction, but mostly the diastolic (i am thinking local vasocobstriction), which results in narrow pulse pressure accompanying the tachycardia. when i lay down it is 110/60. which is like a dream come true compared to the struggle i was having with high BP in the past, but my intuition tells me that the BP in my arm is not necessarily indicative of whats going on elsewhere. i have sensations in my legs, head etc that feel like blood pooling. my hands and feet turn purple and my skin is dry. rolling over in bed causes odd sensations and heart palpitations. etc.

thanks everyone

The MRI, what was it of?

2 hours ago, Yhoun said:

Thanks, stayathomemom, I love being a mom already, and I'm so excited to watch her grow. And thank you for sharing your advice. I would say that I have more constant lighteadedness these days, and when I feel worse, I feel more dizziness. I think you're right, and I can't take a beta blocker while breastfeeding. I will have to judge continuing breastfeeding against possible improvement in symptoms. Do you mind me asking: Do you know what caused your POTS? Do you feel symptoms every day, or does your medication work well enough so that you don't?

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. 

1 hour ago, dancer65 said:

StayAt home mum it usually hits me the next day . When the fatigue is worse then the insomnia kicks in then I am even more exhausted. Hard not to get annoyed and frustrated with these cycles . 

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?

1 hour ago, dancer65 said:

Bellajulz that's great it's helping,  does it help with fatigue ? I often think that tachycardia makes my fatigue worse. Thank you for sharing your experiences 

Bombsh311 I always thought my tachycardia was due to low BP,  this last few weeks I am questioning my theory as my BP is not any where near as low as it use to be . Problem here in the UK they don't have resources to delve deeper with tests to find out the cause . I love to know how you get on with Ivabradine if you do try it.

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. 

1 hour ago, Help4Me said:

HI Derek I had 15 ER visits and 5 of them were by ambulance....this all just started for me 5 months ago...I remember the exact date and time..it was so traumatic......it has been a very very long 5 months for me...and I still don't know if it is POTS or PURE autonomic dysfunction and they also mentioned Auto immune.....so I don't know..I just know that every day I am fighting for my life.....it is the scariest thing I have ever been through and I have been through a tremendous lot in this life......hang in there and email me....

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. 

5 hours ago, Derek1987 said:

I don't know enough about this disease as I'm just now getting treated. I take xanax for anxiety. This disease has me so worried I take Xanax for panic attacks. I already had anxiety before but wasn't taking anything for it. It took me 3 different psychiatrists to actually prescribe me a benzo. They tried celexa, Zoloft, and a few others which did absolutely nothing for my anxiety. I needed a benzo. 

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" ?

1 hour ago, dancer65 said:

No I am on midodrine can't take BB due to low BP. 

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. 

3 hours ago, Derek1987 said:

I did a 24 hour urine test. I'm not sure if that's the same test you are referring to. I've never heard of hyperPOTS. The very first time I fainted I know my blood pressure dropped because it was still low when the paramedics got there. I was sitting upright.it was the worst of the 3. Going black and going deaf and unable to move. I was coming out of it when the paramedics got there but I was so weak and could barley move. In the ambulance laying down is when the paramedic said my blood pressure is coming back up.

 

 

The next 2 fainting spells, I layed down immediately as I felt it coming on. My blood pressure was high when the paramedics checked it the 2nd and 3rd time. I was laying down when they checked it. Actually the 2nd fainting spell I was already laying down. I was laying on my left side with my head propped up on my hand. I panicked and stood up then it seemed to get worse so I layed down. Then the fainting feeling went away. I still went to the hospital. Basically I don't know what's wrong with me lol.

As far as the tick born illness, I think she found that in my blood work . I just took mestinon now that I have the proper blood pressure medication to counter act the mestinon giving me higher blood pressure. I'm pretty nervous about taking medication. Reason being these doctors don't study drug interactions enough. My autonomic dysfunction specialist actually told me to keep taking a beta blocker with the med she is giving me. I'm thinking okay I don't want my heart going too slow. I consulted with my primary care doctor and she agreed and put me back on Lisinopril like I had taken in the past. I also wonder if Lisinopril can cause damage to the nervous system itself. I fainted for the first time 6 months after taking Lisinopril. Anxiety is quite exhausting worrying about everything.

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?

9 hours ago, Derek1987 said:

I've never heard of a nerve conduction study. My specialist said my nervous system has been damaged from the tick illness and the medicine pyridostigmine br will reverse the damage. I don't trust any doctors. I always challenge their word with research. She also doesn't think I have POTS. She thinks it's more of my body won't stop producing adrenaline and my body gives out. That might also be an issue. It does sound like I have POTS though. When I stand, immediately my heart rate increases by around 50 BPM. She doesn't believe I have POTS because on the 10 minute or so tilt table test, my blood pressure remained high in all positions. She said she doesn't think I need compression socks or anything. But then she showed me a illustration of someone with autonomic dysfunction of a person standing up. The longer they stand, the less blood gets to the brain. Isn't that POTS? So I'm pretty confused.

 

This medicine she gave me combined with my blood pressure medicine might get my symptoms to look good, but how do I know blood is getting to my brain properly? I don't think I'll know until I try and live normal. As for now, I feel sick everyday. I get nauseated a lot but I haven't thrown up yet. I just know I don't feel well. Again, thanks for the responses to help me get through this. It's pretty terrifying not having control over your own body.

 

 

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.