AB+72

So sorry to hear this clicky77.  I hope you come out of that soon. 

These are all good tips to know!

10 hours ago, Jan said:

Even if you were perfectly healthy, you would lose the ability to walk, stand and sit up if you stay in bed.  That is part of the reason they get people walking right after surgery.  

My suggestion is to get out of bed every day.  Take a shower and get dressed even if you need assistance.  Lay on the couch instead of bed.  Elevate your head.  A recliner is good.  A doctor at the Mayo told me I had to "retrain" my body to be upright.  Anything up right is good.  When I started on my recumbent bike, I had it on low tension and could only do a couple of minutes at first and increased it very slowly.  You could try one minute, a number of times a day.   I had a PT who designed exercises I could do lying on my back. I had some weights I put on my ankles after I was able to do the exercises with no weights.  Stand up right for as long as you can stand it and then add a minute each day.  Or 30 seconds if that is all you can add.  Stand next to your bed so you can fall over if you have to. Maybe keep a journal so you can see your progress because it is hard to notice. Once you can start to walk, walk a few more steps each day. 

I told the Mayo doctor I could manage my dizziness by only walking short distances at home holding on to furniture and not going any where.  She told me that was not a good plan.  She said I had to push my self or I would not get better.   

I went from bed bound to going out, driving, walking, being able to take care of myself.  I had young kids at the time I was bed bound and HAD to help them.  I would crawl if I had to.  I believe if I hadn't had my kids, I would have crawled into bed, pulled the covers over my head and never gotten out.  I really do understand how hard it is to get out of bed when you feel so bad. 

Most important is you need hope.  The body is an amazing thing.  You can train it.  You are a team. Cheer yourself on.  Believe that you can get better.   I have known many people with POTS who are 95%.  Those people aren't on message boards because they are back to living their lives. 

 

 

 

 

 

Thank you for this.  I've been pushing myself to drive around and do a few little exercises each day.  Walking around.  It is hard but I do believe it is helping.  I'm still making my own food too.  The kids are helping a lot with laundry and dishes though lately.   Well, my daughter pretty much always did the laundry.  I do fold sometimes and I used to bring the load up from downstairs.  I need to get back to the stairs again.  I did a half flight at church on Sunday.  

I like to be reminded about how are bodies are resilient and always trying to heal.    I think it's good to keep that in mind.  I think I used to tell myself that after 35 the body starts to deteriorate.  And that's probably true.  But it is still working on healing.  Otherwise people would last as long as they do.  It's not like you lose resiliency right at 35.....  Or so.  It doesn't just vanish. 

Where will you be starting from?  You're braver than I am.  I think I'd have to do a test run of a shorter flight before I decided to go over the ocean...... 

I don't know how to help you.  You seem way more prepared than I would be.  I just have decided to not fly.....  I'm not sure that I'll ever have to.  But my plan is to just avoid it.  Unless I get to the point that my symptoms have went into remission.  Which may not even be possible. 

I just get to where my heart rate doesn't want to calm down.  And yeah, fatigue.   I've gotten to the point that I just don't push myself much any more.  I don't like being laid up.  Lately I've been more laid up from not even over exertion.  Just stuff.... I'm sure I'm starting to sound like a broken record about that.  SORRY!!  But it is why I'm on here now.  Trying to peal back the layers of yuck and gain back some vitality.  If possible. 

My ears always ring.  And when I think about it, it gets worse.  So thank you.  LOL.  I typically can just not focus on it, I've had it for so long.  It's one of the least annoying symptoms for me.  I hope it stays that way. 

Yeah Astridmj, that supermoon was a doozy for me too.

KS42, thank you for the extra info.  My BP doesn't go up when I stand up.  But my heart rate does.  It hasn't dropped much at the doctors office, but it still doesn't feel right.  I feel abnormal.  Like I can't breathe right.  At times it's better than others.  I think I might be in the category of having adrenaline affect it.  Because I was getting a lot of stress lately and anxiety and my symtpoms overall seemed to greaten.  And like I said, I know that one time I reacted very very badly to lidocaine with epinepherin in it.  And then we switched to marcaine for the rest of my dental needs after getting a test done.  But in the end I don't think it was the lidocaine but just the epinepherin that was in it.  My BP went really low that time and I ended up in the ER.  I probably scared anyone else having dental work done that day.   "Oh my goodness, they sent someone to the hospital"........

I"m pretty sure I tested positive for having mono at some point or another, but I can't remember if the Eppstein Barr was positive......

I read somewhere that people with strep might have induced POTS.  I had it several times as a teenager.  But I didn't have symptoms of POTS until I was in my 30's.  I was a very active, very active up until that point. 

Thank you for the replies. 

KS42, sounds like we may have a lot in common.  That makes me feel good.  I don't know what hyper POTS is and how you would know if you have it.  And I don't know what half the stuff is on the bottom of your page.  

All I know is I'm struggling more lately.  I personally think it's the changes of life, stress, humidity and other environmental factors (sinuses are swollen) etc etc....  Meaning, a whole bunch of stuff.  And I'm not quite sure how I'm gonna unbury myself at this point.  Right now I feel best when I'm just sitting, not doing much.   I'm just praying I can peel the onion and get back to what I was sometime....  

I miss feeling human. 

Thank you for the tips on disability.  It also makes me feel better.  I'm going to keep plugging away at it.  I'll entertain hiring a lawyer.  I stopped working in like 2010, so....  if they awarded me back pay, there probably would be a chunk....  I'm not really concerned about backpay though. 

Can't you cut the allegra in half or 1/4 or something?  My doctor is recommending zyrtec or allegra.  I'm thinking I'm going to try one.  I'm not sure I care if it makes me drowsy, if I take it before bed....  Although non drowsy would be better as long as it's not ramping me up......  I personally would rather take only a part of a pill right off the bat, to see if I can tolerate it. 

I just remembered, we have a dehumidifier in our basement I should try out.  Lately humidity in our house has been around 50.  And even though it's in the normal range, I think I do better when it's lower. 

I used the steroid inhalor today and I think it made it worse....  I'm thinking about trying clariton or some over the counter drug.  Or, I may try some quercitin.....

Have you learned to just breathe through your mouth more? 

I'm not exactly sure what you are saying.  Are you saying I don't have it, or I have a different type other than POTS?  I'm pretty sure I have a lot of the symptoms of some kind of dysautonomia.  One time when they used lidocaine with epinepherin my BP crashed big time.  And I've read in some places that epinepherin will do that to some people with dysautonomia.  Among other issues like needing to keep water volume up and no sweating and low bp.  Palpatations and swings in heart rate for several reasons that aren't normal.  Gut issues.  Problem with the pressurized cabin on a flight.  Etc etc. 

I saw my Doctor last friday and she said my nasal passages are swollen and inflamed.  And prescribed a steroid inhaler.  I have a feeling this has had an impact on my health lately because I'm not breathing good through my nose.  I think that is why I haven't been sleeping as well lately and it may be a key problem.  But I'm not sure how to solve it.  I'm hoping the inhalor helps, but I have a feeling there is a larger, underlying cause.......

Just curious if anyone else has been down this road....

4 hours ago, WinterSown said:

POTS is not the only dysautonomia, there are over a dozen types. 

There is no such thing as passing or failing the TTT. It's a test to determine your body reactions. A diagnosis is made based upon your history, your current state, and how you respond to the test--the doctor and team of assistants are listening and watching you all the way. I never fainted, didn't even get close. 

This is a good page with descriptions of the many forms. What's to Know about Dysautonomia

I apologize for saying I failed the test.  I feel like I failed it.  LOL.  I remember the gal working with me seemed......  like surprised that they got a person that had issues.  It was in Jacksonville and they had just put that wing and equipment in I guess........  At the time. (November 2010) 

They also tested me for sweating and breathing into a thing to keep up a certain amount of pressure. I got lightheaded doing that and didn't sweat.  It was like, what the heck, I'm messed up apparently.  And the Doctor had a fancy name for what he thought I had.  I thought he called it Reflex depressor syncopy.  Or something like that.  And then I got diagnosed by POTS by my EP when I got home.  I saw him with the recommendation of the Doctor at Mayo and I think they communicated. 

Well now after looking it up, maybe he was just saying that's what I did in the test.....  Vasodepressor Syncope.  Which I guess is a way to say fainting......

Anyways...  Thank you for the link.  It does look like many of my symtpoms are typical.  And yeah, mine I believe has been caused by Lyme Disease. 

It is the downside to a capitolist society.  People charge as much as they can.   It crosses a line of what is acceptable and moral and fair, IMHO.   I'm not saying socialism is better.  I think it's worse.   If everyone in a capitolistic society charged a fair price and thought about their customers abilities, it would be better.  But many times, it's just about how much someone can make.   Which has it's upsides.  They can grow, employ more people, put more money back into the economy and also give generously to charities.  But from my estimation it's usually at the detriment of the 80% of people struggling to make ends meet.   And people with health problems might not even be making ends meet.  So.......  It's a messed up system if you ask me. 

I'm not good at the not whining stuff....    When people ask me how I'm doing, I tell them the truth, but then I always feel like a bundle of joy (sarcasm) and feel bad to be whining to everyone. 

Wow, did you get disability that quickly?  I just started filling out the application on Friday.  I don't know why I waited so long.  I've had it for almost 10 years now.....  I was feeling like I was slowly getting better but have had a turn. 

I don't want to diagnose you.  But despite that they said it's not H.Pylori, your symptoms sound like it could be some kind of "gut bugs".  We can get all kinds of things in there.  I think my recent flare up of bad health has a connection to my gut.  Possibly.  It's hard to know because most regular doctors don't test properly for that kind of a thing.  If you're not sure you could always eat things that are good for the gut and getting rid of gut bugs.  Which is what I've been trying to do.  A probiotic is a good idea.  A lot of herbs are anti fungul / parasite.  Garlic is.  Ginger is.  Thyme, Oregano.  Peppermint.  Clove.  Coconut oil.  And then there are supplements you can buy that help gut health.  A lot of people carry them and make them.  And they have ingredients like marshmallow root and slippery elm.  In fact I think I need to add one of these supplements to my diet for a little while.  

I don't know if that would help or not.  But those herbs can't hurt.  Even a supplement for gut health probably can't hurt, even if it's not the direct cause of your issues.  But I know I've been through similar symptoms and mine were alleviated by working on gut health.  Especially the bloating and no appetite. 

Mayo Clinic uses biofeedback?  Where? 

My sinuses have been terrible this year and I think is contributed to worse symptoms.  I was not breathing well through my nose at all.  I've been wearing the breathe right strips on my nose and I've been wearing them all day and all night now.  I don't care how it looks.  I breathe much better with them.   I think I was getting anxiety just from the fact that I wasn't breathing well.  Even with trying to keep my mouth open it's not the same when your nasal passages are stopped up.  I'm actually seeing my doctor tomorrow for this, but I don't know if there is anything a regular family MD will do other than prescribe another drug.  Which I'm not sure I wanna do.  I may be open to steroid nasal sprays since I doubt they would interfere with anything else I'm taking.   At least I don't think they would.......

Lately my symptoms are really stiff and just making myself food is all I can take.  I have not always been this bad and I'm hoping to climb my way back out.  But as I do, I have never really had an exercise routine.  But when I'm not at my worst,  I usually do the dishes and figure that is some kind of exercise.  I only did 1/2 hour stints.  Lately I can't even manage that and my daughter has taken over that job.  Thankfully. 

But it sounds like even when you some of you are pretty bad off you try to exercise.   What do you do?  i mean lately I've just been doing a few arm circles with my arms all the way out for a minute or so.  When I'm feeling up to it.  Trying to keep my shoulder muscles with some strength.  And like I said I still cook myself stuff.  Although nothing crazy.  It's usually a simple affair to keep it to a shorter time period. 

Thank you for the responses....  I'm unsure as to what to do.  Lately I've been getting kind of a scary symptom and I'm not sure why.  But it seems to coincide with taking it.  And that is my chest feels heavy sometimes.  I don't know if it's my body trying to adjust or what.  But it makes me not want to take it.....    Problem is, it's helping with sleep and anxiety......  I might just need to figure out the proper dosage.  Because even on 10mg a day I was seeing a lot of affects only after 4 days of taking it.  And I may need to take even less a day to strike a good balance.  My blood pressure is still like 120/80 pretty consistently. 

The seretonin supplement was not working on it's own to manage the severity of my symptoms lately...  Although I never really took a LOT of it.  Maybe I should've tried to take a larger dose........

Hello Everyone, I'm new here.  I was diagnosed with POTS after going to Mayo Clinic in 2009 or so...  And had the tip table test.  In Jacksonville, FL.  I have tried to live and manage with it by keeping water intake up, especially before I get up from sleeping.  And just keeping my upright stints to 1/2 hour, and then sitting down.  I had seemed to get progressively stronger over the years.  Which btw, I also have lyme disease.  Which I think probably caused the POTS. 

Anyways...  Well this year everything has sort of come crashing down on me.  More stress about money, other stressful things in life.  I think there are some environmental factors going on and I felt really lousy this year with more fatigue than ever.  In the past I used to go to an MD that was a specialist in chronic disease and autism.  And he used a holistic approach and supplements.   Although he could prescribe meds if needed.  Well he is no longer with us and I have not found a replacement.   Plus he was expensive.   All of those types of doctors usually are and not covered by insurance. 

I have started to go down the road of treating my symptoms with medicine.  I'm on escitalopram for anxiety presently and I have found info that it may even help with POTS symptoms.  I still keep up with my supplements that I know help me.  But therein lies one of my problems / questions.  I had been taking a seretonin support supplement  (L-tyrosine and L-tryptophan blend), but now unsure if I should keep up with it.  My Dr. first said yes to this, but I've also read that you can get too much seretonin in your system with SSRI's without even taking any outside supplement. 

Has anyone had any experience with this?  I stopped taking my supplement as of yesterday. 

I do feel like there may be a positive affect from the escitalopram in dealing with the POTS symtpoms.  Possibly.  But I'm only a week into them and need more time.  I definitely have less anxiety.  I was having panic attacks quite a bit. 

Has anyone else used an SSRI for treating their POTS symptoms and did it help?  I feel like it may have raised my BP some and that might be a good thing.

Thank you for your help.