cupcakemomma5

I am actually going through this now as we speak. And I did ask my gp if it was normal, she did say yes, as it is your body's way to fight the infection. Temp will spike, and HR will compensate for the fever. My hr last night was 167! What the heck!!

But today, my fever broke, and HR is back to norm (well, potsie norm)

I am the opposite, Cymbalta has not flared up my symptoms, and does calm down my chronic pain..

I do have a tendency to react the complete opposite of everyone else on the same medication though....

Yes!!! Oh my goodness, I was having the darndest time trying to explain this to my hubby...

And I am still dealing with the brain fog...simple things are just blustering me up...Very frustrating.

I am actually being sent to a genetics doctor, my gp just put in the refferal....kind of nervous...

I wear the full pantyhose, I was tired of looking like I had multiple bum cheeks with the thigh highs....lol

I generally wear 20-30 toeless and 30-40 with toes. I typically shop through brightlifedirect.com

Especially since they ship to canada for free ( a bonus for me )

Good luck

I can say that I was put on cymbalta, it has helped.....How much I can't tell you for sure. I am on florinef and propranolol as well as tecta.....

My bp is still low (not so low,to have me passing out) But I haven't seen it go past 112/89. And my hr is still a wonder. With the meds I'm on, my resting is 63-76 and I sit or stand it jumps to 116+ I climbed the stairs with a laundry basket and I was sweating profusely and red and splotchy and my hr was 204....

So all to be said. I don't know. I do still wake up with the rushes of adrenaline somenights, even through my sleep meds..

But as you may notbe aware of, what works for one of us may not work for you and vice versa.

Love and luck with your journey.

Boy do i ever! All the time. It takes me a while to get it straight in my thought process before I can even spit it outl very frustrating for everyone.

I was doing a pt program at our cardiac rehabilitation facility, it was okay. I definitely stood out from everyone. Everyone else was walking and doing group exercise and I couldn't follow along. That was the only frustrating part. I did end up on a rower for 20 minutes, which I loved. Right now I am doing yoga every Monday and I find that helps as well.

I would love to have a personal trainer who knows about the symptoms and how to go about treating us, mine was more frustrated because I didn't really belong (in her mind anyway...lol)

Enjoy it, and just make sure you document how you are feeling and what your body is doing, this way, you will know for the next time that maybe "X" amount worked great or didn't...

Good Luck

Hi there,

I can say I am of mixed race. My father is irish and mother is west Indian (Caribbean- Jamaica and st.Kitts but Portuguese on that one).

Can I say I am a heinz 57. Crazy mix

Thank you all for the lovely feedback.

It went really well today, we will have to see on Wednesday if they amp my workout a little more.

I finally felt like I was heading into a good direction. Cuz we all know, by tomorrow that good feeling vibe just might be suckered right out of us....lol

I am a little nervous about starting this tomorrow....lol

I have always been a busy person and I still try to "pretend" that I am up to everyone else's speed. I do pay for it though.

This is what I am worried about, everyone who will be there tomorrow is in the senior category who have suffered with heart issues. I on the other hand am 35, with no heart issues other than the POTS. I was wondering if anyone else has gone through a program like this and how did you feel about it. I am very grateful for being selected to join,but leary. Will they expect more of me because of my age and not the condition. Here is my brain working overtime.....lol

And it doesn't help that for the past couple of days I have been symptomatic, I really hope tomorrow goes well.

Thanks for reading, even my venting post helps

I hope you are all doing well in this journey....

cupcakemomma5,

I too have been symptomatic since I was a teen and had mono. Please let me know if you find things that really work well for you! I would really appreciate it!

Hope

It's very frustrating, believing all these years that I had anxiety (never did though) and then one day boom! Full on symptoms.

If I find anything that helps will definitely pass it on. Where you dx as a teenager or as an adult?

Try doc.Higginson. I know he's a cardiologist, not neurologist, but he may get you into one. Oh, C. I am really praying something will just click with the doctors.

I am here if you need me.

Hugs

Tara

Funny, (not in the laughable way).

I have had those exact test, and I ended up with a benign tumor on my liver as well.(With the typical check back in 6 months ).

Everything else that has been poked and probed I get so tired of being somebody's lab rat!

I guess the next thing would be to push for more autonomic testing.

I wish you all the best

Hugs

35 now, 34 when I symptoms hit hard. However doctors figure I have had this (whatever "this" is) since I was 16. Right after I ended up with mono.

Hey Hun,

Why don't you ask your gp for a referral to Dr.Higginson (heart Institute). If your doctor is backing you in a corner than he really isn't helping you. I am really sorry you are going through all this right now.

Keep me posted. Txt me and let me know how the apt. went.

We should all write one of these. It's great therapy!

Thank you for sharing.

Loving hugs sent your way.

I am in awe of your take on things. I truly believe our attitude and the positivity you send out will only come back to you.

I send you hugs and wonderful karma.

So I finally got a call to say my appointment is scheduled for September. 19 and 20th (due to its am out of town)

I haven't been told what is the prep like...

If anyone here has gone through it I would love to hear about your experience.

My last ttt was a disaster, doc wanted me on meds and then blamed the meds for the result???

Anyhow, I just wanted to know if the Hamilton General does the ttt with the iv and nit. Or do you go au natural.

If you don't feel comfy posting on please PM me....My nerves are beginning to fray...lol

It's the fear of the unknown and knowing I guess. Or more like, great what is he going to tell me that is either the same or completely different than everyone else.

Thanks All

Hi freaked...

I am so sorry you are having a rough go. I was diagnosed with "pots" last August and just finally got an appointment in Hamilton,Ontario in September.

It really is a trial and error type of disorder, I have been on the same meds since Aug.2012. No one wants to touch them till I see theguys in Hamilton....lol

I have found that compression stockings help (not the sexiest things on the planet but do help with the pooling in your legs/feet)

Also you can ask your gp for a referral to one of the specialist. Where are you in Canada? I know about Dr. Morillo in Hamilton, Dr.Schondorf in Montreal, Dr.Cliche in Montreal, and another doctor in London.

The wait times are seriously crazy, so anticipate that.

Till then, get to know your new you (corny I know), you will learn the signs. I personally salt load, stay extremely hydrated, and get enough sleep. I find that once the tired kicks in and you try to push yourself, the next day or days can be cruddy. It's hard being in your twenties and trying to figure this all out. My cardiologist is a great guy, and when I went in there panicking about a trip that was planned before my dx,he was like....what's the worse that's going to happen, you will feel like poop, you will be tired, but you're not going to die.....Reassuring right....lol

Anyhow, I did see a psychologist for coping mechanisms and how to deal with all of the fun stuff. And it did help.

Sorry, I tend to run on....I wish you all the best and if ever you want to vent feel free to pm me.

I am on 60mg of cymbalta daily, do i see a difference, a little. It has helped with the anxiety i never experienced until the potsie dx.

As for side effects, not that much (I am already dizzy, and insomnia has come with my other meds)

For me I do prefer cymbalta to Cipralex or celexa. I did ask my pharmacist about zoloft, and he stated that zoloft is an older drug and cymbalta is his sister drug (best was to describe it I guess)

Good luck with which ever you choose. Med changes are always a pain in the patooty

Oh my goodness! Ping Pong treatment.....

21 days in the hospital last august and I think I had every specialist look at me and then discharge me, only to be sent to other so called specialists.....lol

Only to find out that there are only 3 real ANS specialists in Canada.....and one complains about getting everyone else's "problem cases", so he just collects out of province fees and says your fine.....(sorry, little bitter...lol)

Hi Kelsey,

Welcome to the forum. I has been a godsend to me since my dx last August (some say I am still a newbie with the whole POTS thing)

I understand how scary it is with kids, my 5 range from 4-16. And it is just as scary for them.

The advice I can give you is just what I learned in my quick year.

Question everything.

If you feel off kilter, then you are. Take it easy that day.

I was worried my kids would think I was the wet rag for everything....And that was false.

I find we tend to over analyze everything, and then that doesn't help with us trying to control hr and bp.

And probably at this point in our lives we get to be selfish (which is ridiculously hard cuz we are moms...yep.....to our kids we are gold.) I have learned on my really fatigued days I get some kiddie movies and we camp out in my room and put the oldest kids on food duty. Works out well

Anyways, glad you found the sites and if ever you want to chat pm me

Cheers

Tara

Thank you all for the support.

I know everyone of us at some point or another falls into the "pity party" mode.

I am seeing my doc this week and hopefully she can shed some light on where I am heading next.

Thanks again.

I send you all healthy vibes

I have just been going through alot lately, me with my health and still waiting for the specialist. Yet being sent for every other test in thebook (but not the tests that matter. Noooo,test that we already have answers from!)

I stopped smoking 2 years ago(prior to my dx) and just this week after frustration and feeling a lot down, I decided ah, what the heck.

Well here's my question. I don't plan on continuing (I know all the risk)

However right now it feels like my body is on hyperdrive. My hr is crazy high, I am sweating like I ran a marathon.

Now I should state, I am on propranolol and florinef and cymbalta. All for increasing my bp and lowering my hr. do others who smoke notice that it does this to your body...

I actually laughed...I said "Great, so since this darn dx last Aug. I can no longer run around like I used to, I can't drink if I go out with my husband, and now I can't even have a smoke!.....Now what!