What helps?!

[jen201041]

I have had a horrible flare up of my POTS and have hardly left my house in a month because it has been so bad. I feel like I start to see some improvement but then it just gets horrible again. What do you do when you have a flare up to help get back to "normal" POTS symptoms?

[Heiferly]

Is "bicarbonate of soda" another word for baking soda?

http://en.wikipedia.org/wiki/Sodium_bicarbonate


The sodium content of baking soda from what I can see online is:

1 teaspoon baking soda = 1260 mg sodium


Table salt has:

1 teaspoon table salt = 2325 mg sodium


So, for every teaspoon of the bicarbonate of soda you take in you're getting almost 55% of the sodium you would be getting in a teaspoon of salt.  You're basically salt-loading, which is why it will have the effect on blood pressure (as you said by retaining water).  If you're already on a salt-loading program, you can count these mg of sodium into your daily sodium intake whenever you take this for your heartburn.  

You should probably discuss this with your physician, though, because a cursory examination of this treatment for heartburn online revealed that it can have an effect on potassium levels.  Because some dysautonomia patients have problems with their potassium levels, you may want to double-check with your doctor that your potassium has been screened along with your other electrolytes and that this remedy in the dose/frequency you are taking it will not cause any problems with potassium in your case.  Both hypo- and hyper-kalemia (low or high potassium levels) can affect the heart because of their impact on muscle.

Thanks for sharing your finding.  This may add an additional method of salt-loading for some, in addition to the heartburn remedy.  Hopefully docs can give more insight into the suitability of this in individual cases with regard to its effect on electrolyte levels.

Best,
-Heiferly.

[whittle]

Hi.  I hope u r feeling a bit better now.  I think I may have stumbled upon something.  I had really bad heartburn today and was looking on the net for natural remedies.  It came up with bicarbonate of soda but gave a warning that if you have high blood pressure not to take it as it raises blood pressure by retaining water.  Perfect for raising our bp tho if it works.  I took a teaspoon full in a glass of water after stirring religiously and within seconds the heartburn was gone.  I'm going to take my blood pressure today to see what happens.  I have my own o e at home as I found that when I was really sick I could take my bp and if it was ok it would stop me from getting into a panic. It was really useful.  I don't use it much now.  Only if I think my heart is really racing,  will let you know what happens.
Lynne

[Heiferly]

Jen and Shari,

I'm back from my vacation and wanted to check in and see how each of you (respectively) is doing now.  Are either of your flare ups letting up at all?  Have you had any contact with your docs and, if so, have any changes been made to your treatment regimens?

If you haven't done so yet, I recommend you look over our Health Pages (link in the upper right hand corner of the pages here in our forum next to yellow background icon with picture of pieces of paper on it).  We share our Health Pages section with all the other neurology-related forums, so browse through looking for topics that are related to your interests in particular.  You're likely to find some pages that are works in progress, as the pages post live even as we are tinkering away at them over time (ahem, sometimes over a long time ... not that *I* would ever take months and months to complete a project ... lol).  

The one I most recommend if you haven't seen it yet is our further reading page, where you can find more articles to read.  Some will be relevant to POTS and some are about other forms of dysautonomia, so just browse through and see what strikes a nerve with you (har, har ... gosh, I guess I'm feeling "punny" today):

http://www.medhelp.org/health_pages/Neurological-Disorders/Further-Reading-on-Dysautonomia/show/696?cid=196

[Heiferly]

For some reason your profile lists you as "male."  You can see this is you hover your cursor over your username "Sharingme2" in blue at the top of any of your posts.  It was probably just an oversight or a glitch when you first registered your account.  I think the default option is male, so if people don't change it to female when registering their account it goes in as male.  I've seen quite a few women with accounts that say "male," so I've learned over time not to rely on that.  I honestly don't know if it's something you can change after your account is already set up or not??

[Sharingme2]

Hi Lynnr,

Not sure why you think I am a man, but last I checked I was all woman   LOL  I know about EMDR but never knew anyone who did it.  Its great you had a good experience with it.  Hope you got some sleep!

xoxo
Shari

[whittle]

Could not sleep.  I get restless leg syndrome.  Drives me mad.  Plus my partner was snoring his head off:).  You are the first man I have spoken with that has pots.  I thought it was mainly women that got it.  I really do believe that hormones play a big part.  Have you had yours checked. They did an adrenal test on me which showed up nothing.  It was only when I had a hormone check to see if I was going through the change last feb that something showed up. It might be worth asking if you can get yours checked.  There may be an imbalance.  I'm interested to know ether or not stress bought your symptoms on.  I'm sure this was the case with me.  I had EMDR treatment with a therapist which was fantastic. I did not think it was going to work as you sit there and he waves his hang in front of you and you have to follow it with your eyes.  Rapid eye movement.  I was amazed after a few sessions what came out.  Deep stuff that I did not realise was a cause of lots of stress.  It really did help.  Worth looking into.
Off to try and sleep again:)
Lynnr

[whittle]

I used to drink like a fish :) I just watch other people now.  I'm off to bed now.  It's late in London.  Your in the us I guess.  Hope you get time to read the blog and it helps.  Hope u have had a better day today
Lynne

[Sharingme2]

It's funny...my whole life, even as a teen I could never drink alcohol.  It always made me feel ill after just one sip.  Now at age 42, I finally understand why!

xoxo
Shari

[whittle]

Good morning.  I forgot to say.  The diet I follow is from this book
The GI Plan by Azmina Govindjl and NinaPuddefoot.
I only use the book to look up the GIPs for food types. I do not do the diet.  I try and eat foods with low GIPs as they release sugars into the body more slowly and this seems to help.  I don't always stick to it tho now I am better but I never have alcohol now as this definitely makes pots worse.

[whittle]

Sorry the spell check changed the email address. It is in fact:
http//lynnecampbell.blogspot.com

[whittle]

Hi.sorry I wrote it down from memory.  It's
http//lynnecampbell.bloodspot.com.
I must do a proper update on there but for now click on the comments and you will see how I have got better. I do still wake up every morning to a racing heart but I try to ignore it and take my meds.  The symptoms go off after a while.  Every day I do still feel tired but I fight against it and stay out of bed.  If I get too tired only have an hours nap in the afternoon. Most days tho I am ok. It took me a long time to research everything for my blog and this was whilst I was really sick so I really do hope it helps you.  All that work will be worth while :).  It was a real struggle at the time. Even to sit at my pc.  But I am proof that we can get better so stay strong and fight this dreadful illness.  Most of all try not to panic.  Easy to say when you feel like you are going to never get better.  But I pray you will.
Let me know what you think
Lynne

[Sharingme2]

Hi there, the blog address you posted doesn't work...can you retype it, I'd love to see it.

Thanks,
Shari

[whittle]

Sorry I could not find my glasses last night.  It should have read out of bed :).  I'm not sure  if tea raises bp more than coffee but coffee gives me eptopic beats so I avoid it.  I have not got much time now but I have updated my blog today under the comments heading when I answered someones question.  It will show you hoe I got better. If you get time have a look.  I hope the blog will help you
Speak soon
Lynne
My blog http//lynnecampbell.blog.com hope it is of use

[Sharingme2]

Thank you Lynne for taking the time to tell us what help you.  We need each other because so few people understand what POTS is like.  Thank goodness for the internet or I never would have discovered what I had, and been able to talk to others with it so I feel less alone!

Above you said you eat GI foods...did you mean low GI foods?  Does tea raise blood pressure more than coffee?  Also you mentioned an "outbox" in your first post, what did you mean?  It was about exercise..  Or did you mean "box exercises" and in that case, I don't know what that is either  LOL  But it seems that you know about exercising when you pretty much can't do anything (which is in my case) so I want to understand what you do.   I totally agree with you about the panic, it makes everything worse!  Sometimes POTS feels so bad that you feel like you will die, it's important to remember we won't.

Thanks again Lynne!
Shari

[whittle]

Oh eat GI foods.  Little and often.  Drink tea as it raises BP.  Organic is better.  It's better for u than coffee as it does help the immune system.  I do still have flare ups.  I think stress is a major cause of pots.  It was in my case and I know the flare ups are caused by stress or when my period is due.  But as long as I force myself to go for a walk and stay out of bed gradually I get better.  Pots is a terrible illness.  It's always round the corner.  But we are not going to dye of it and the main thing is to try not to panic as this makes the heart rate worse.  Sorry these were rushed messages but hop they help
Lynne

[whittle]

I came down with pots in 2008.  I already had marfans syndrome which I was born with.  I was admitted to hospital in may08 and spent most of the year there.  I am better now.  My battery is running low but here is how I got better
I take paediatric atenalol 3 times a day 5ml.
Seroxat 10mg 1 tablet per day
Exercise is curtail.  If u can't get outbox bed exercise your legs in the air like riding a bike
Then when u r a bit better get a lying down exercise bike
I think hormones play a big part.  I am 46 now and I think they effect young girls who get pots.  I have a mirena coil now (sorry not sure that is spelt correctly) and since I have had it am much better.
I started to smoke again.  This raises blood pressure.  I would not recommend it but it works for me.  I will write again when I have more battery
Lynne

[Sharingme2]

Jen, the link to the article you sent me to was AWESOME!!  Thanks for pointing me in that direction.  I am going to discuss the article with my doctors this week.  I am seeing 2 new ones and wil be picking their brains to see if they know enough about POTS for me to keep seeing them.

xoxo
Shari

[Sharingme2]

Hi Jen,

Thanks for the link, I'll go check it out!  Are you feeling any better?  I am starting to feel better.  I have been on a very low dose of Midodrine for a week and something is helping, and thats the only thing I have changed, so I am assuming its that.  I am incresing my dose a little today, working my way up.  I have 2 doc appts next week, one is a cardiologist on friday.  Hope to get more answers soon.

Shari

[Sharingme2]

Heiferly,

I'm so sorry you are in a rough spell!  No worries about getting back to me so quickly, take your time and take care of yourself.

Shari

[Heiferly]

Hey you two, I'm going to reply more to both of you and hopefully get you a bit more info, but I'm in a rough spell myself and spent all day in bed and am just now out after 3 AM and should really be getting back in to ... well, go to bed, LOL.  I'm hoping tomorrow is a better day and I can be up and at 'em.  If you don't hear from me again by Monday, please send me a PM (hover over my username in blue and click "send message" in the dropdown menu that appears) and remind me I need to get back to this thread to get more info for you.  

Sorry for the delay.  Take care of yourselves!
-Heiferly.

[jen201041]

H POTS is Hyperadrenergic POTS and PD POTS is Partial Dysautonomia POTS. I haven't found much information on H-POTS but Heiferly posted a link that was helpful in showing the differences between H POTS and PD POTS. It was http://circ.ahajournals.org/cgi/content/full/117/21/2814

Hope this was helpful!!

[Sharingme2]

what are H POTS and PD POTS?

Thanks, Shari

[jen201041]

Thanks so much for your response! My dr. diagnosed me with PD POTS, I fit the criteria better for H-POTS from what I read though, but I have low blood volume and my dr told me I can't have H-POTS and low blood volume unless I have a connective tissue disorder, which I do not have (thankfully!). I have never tried Clonidine before. Right now my dr. has me on Celexa, which I just started a week ago. It has helped a lot with the panic attacks, but makes me extremely fatigued, dizzy and weak (I cannot get out of bed). My dr thinks those side effects should wear off soon though as my body gets used to the Celexa. You're right about the flushing. I don't know all the right medical terminology for everything with POTS yet (I've had symptoms for 8 years, but just got a diagnosis last year). My blisters have gotten better thankfully. I'm still not really sure what caused them, but my feet were really red and hot for several days when I had increased my Florinef and maybe they were heat blisters or something. I know they weren't from shoes, because I haven't worn shoes in a couple of weeks lol. And I did get an appointment made with a counselor, but it's not for several months. I don't think he'll be able to do much about the panic attacks, but it will be good to have someone to work with to figure out how to deal with the POTS better and how I can live a more normal life. Thanks again for your response! I appreciate it a lot! I'm planning to bring up some of the points you made with my ep-cardio next time I see him!

[Sharingme2]

Thank you so very much for your lengthy and thoughtful reply!!!  I appreciate it more than you know (or maybe you do know )  I also benefitted from reading your reply to Jen.  

Jen, I hope you feel better soon hon!

Best wishes for us all for feeling better today,
xoxo
Shari