SarahA33

Hi Elizabeth,

Thought I'd chime in and offer what I could, Sorry to hear that you've had your share of struggles, but your amongst friends here. I experienced ulcer's last year that the dermatologist told me was hand,foot, and mouth disease/Impetigo that honestly made children cry when they looked at me. I was terrifying I ended up showing my hypertension specialist who knew immediately they were amlodipine burns (what he called them) and was successfully sent to and treated by an advanced wound healing specialist. The dermatologist who i saw originally was so wrong.. sooo wrong, as they were actually sores/ulcers caused by the Amlodipine (Norvasc) (Calcium Channel Blocker BP Med).

The main symptoms I had from Midodrine were the goosebumps/temperature control which made my already difficult thermoregulatory issues that much harder to deal with.

The supine hypertension I was getting also made my doctors nervous, but I was noticing benefits from the midodrine and i didnt want to stop. I rearranged my dosing schedule so that my last dose of midodrine as 4- 6 hours prior to laying down instead of the universal recommendatiom of 4. We also increased the clonidine by 1/2 of .01 Just thought of something... do you measure your vitals at that 3.5 peak when your coming off from the meds? I wonder what your heart rate and BP's usually are and if somehow you might be able to play around with the timing of certain med's to prevent it?

Hang in there

Sarah

jgenson,

It's amazing that the first sentence you wrote to me is actually a lyric from my favorite song Idiot Wind. "I haven't known peace and quiet for so long I can't remember what its like." I'm a big goal setter, I'd like for you to know that was one of the nicest messages that anyone's ever sent me. I long for peace, also.

I'm still pretty young (Although not for much longer..) and my fiance and I have only begun to skim the options we have. I'm incredibly lucky that he makes it very known to my doctors that he could never lose me, so we'll have to come up with other ideas that won't jeopardize my heath. Sorry i got off on a bit if a tangent here

Kara and before the morning,

Hi Lyla, Thanks for checkin in.

How are you feeling Kara?

Sarah

gjenson,

So many members on here have been blessed with chidlren, but it must be hard to go through this with young children especially. We all just do the very best we can though.. You deserve some type of the father of you year award. I've wanted children as long as far back as I can remember but it just doesnt look like its possible at this point. Another thread, another time!

Anyway, from what I've read in the posts your family is so fortunate to have you. How old are your kids? You probably mentioened but of course, I can't remember.

As for my life returning to boring.. what i mean by boring is, no new symptoms creeping up on me, staying out of the ER for fluids atleast a month, and letting things just "settle" for a while. Breaking my routine is quite difficult and not being able to plan the next step is almost totrture. I like making plans plans. Which is just another reminder that I need a new plan.

Sarah

Hey,

Thanks guys. I'm waiting for my life to get back to being boring again. Fingers crossed

username,

I'm from upstate so I don't have much help with suggestions doctor wise other than I think there is Dr. Kaufmann at NYU I've read about.

Octreotide does raise your BP. I was given it when I went through neuroendocrine and they watched me like a hawk. (I have high BP). I didn't feel any relief during it but it was only injected twice.

Good luck with your search, sorry i couldnt have been of more help.

Sarah

Hi guys,

Just wanted to update.. My appointment went well. Until he came into the room I actually forgot how much I'd liked him the first time I met him years back. He was extremely honest and basically told me an ablation would probably be the best route before any type of device is inserted. Regarding the worsening of the pots symptoms post-ablation he explained that clearly my options weren't vast and that the benefits may outweigh the risks but he's going to reach out to 2 pots specialists that he knows to consider their opinions. The chance of medications suddenly controlling my heart rate without an ablation are basically none existent, but he recommended verapamil in hopes of helping the svt.

Also, he sees on the echo and heard mitral valve prolapse. A new addition as I've never actually heard of this before. He recommended a cardiologist to see there as it falls out of the EP specializations and is a structural issue of the heart. I'm going to follow up with my cardiologist here and he'll complete the testing also. Anyone familiar?

So..he ordered a chest X-Ray, a 24 BP monitor, a ton of blood work, a nuclear stress test, and an angiogram (the angiogram is going to be the hardest part of this for me). I have 4 weeks to complete the testing and then I follow back up with him to see how the Verapamil worked and to review everything as a whole. More questions than answers but I'm getting there. Thanks for the support everyone!

I'm also on midodrine and feel like I have to sometimes take double gasps at the same time to take in enough air. I never associated it with the midodrine because that's become a normal thing for me w/ the tachycardia. What's your HR like when you feel like this?

Justin,

Just thought i'd let you know I've never heard of that program. What I read online seems like he starts by talking about deconditioning and not pushing yourself too far too fast if you want to get to the end goal?

Anyway, I have had experience with a doctor who specializes in Exercise Medicine and Physiology at the Mayo Clinic in MN, Dr. Mike Joyner. He's great.

Sorry that I didn't have answers for you! Good luck

Jackie.. from the start of this post a little while back, how are you feeling as of today? I've been wondering

Your sweet to send positive thoughts while you aren't feeling your best. I badger my doctors with emails all the time.. I doubt she'd agree to charge you..she's probably learning a great deal from this. What kind of dr are you following up with? Cant remember if your a mayo chick or not!

Gjenson,

It seems like the more control I try to regain the faster it all spins out of control again. I have to agree, even though I've been diagnosed with hyper pots I still am unable to fit exactly in that box for treatment. Sometimes we fit into boxes a,b, & c.. not just a. Now, that would be much too easy lol

Sorry to hear it seems your going through a bit of a rough patch. Your closer than you were before and even a few steps forward with some taken back is still progress. It meant a lot to me to not feel like I wasn't going through this alone, so this website has introduced me to many new great people and 2 especially close ones that I've been able to identify with and form actual friendships with. It's easy to often isolate with family and friends and I've learned over the years how to disconnect while the physical symptoms are so prominent.. It's a balance of letting go and just being that i'm trying to adapt to. Do you have a touch of type-a too?

I hope some of this helps. I guess all I was trying to say was.. you aren't alone!

Hi there, GJenson,

Thanks for rooting from afar! Since you are a new member on here then you or someone you care about struggles also, so positive energy sent out your way!

Alison,

Wow, you've been through a lot to say the least. I seriously cannot handle a 70-100 pt spike in my hr, let alone a 200+. So for most of the time before the svt's it seemed as though you weren't running too high but then would get those episodes. I almost fell out of my chair when I read about your episodes.. they are eerily similar to what I've gone through. A huge spike in hr, (but mine also includes BP), vomiting, dizziness, blotches and reddish/purple skin color. The SVT just kicked in but I've had a really hard time controlling my heart rate even with mass doses of multiple medications. Resting it's about 115-130 now but climbs.

Can you help me describe this feeling I get in my chest, because the only thing I can seem to find is that it feels like it stops, then clicks, then flies..

Thanks for sharing that. It's so great to hear about awareness increasing.

sounded wonderful!

Lyla... thank you for the feel better wishes. I need em'! I don't think I'm alone in saying or feeling like having this disease is overwhelming and completely consuming. I feel like one huge heart beat walking around.

Dave, I mean, I had posters and everything!

Sorry to hijack Jackie.

I know how much it's helped a lot of people and I really haven't heard about any negative side affects other than GI from those closest to me that have taken it. How much of hr increase do you get from supine to standing if you don't mind me asking?

Jackie,

I've gotten no where with it either.

any luck for you yet? Thanks for the link. Stay Well, Sarah

Jan & Chaos,

Thank you both for the support.

Ctatt,

Hi! I see your new...welcome!

I get that w/ BP/HR machine's all the time, "This one must be broken.." , then I say, 'Nope.. it's not broken." lol. Yesterday in the ER it was so touchy that I was around 220 but when I'd even move my arm around I'd set the alarm off because it'd jump up. Then I'd stand up to pee or something and then whoa! ..yeah i'm sure they were thrilled I was there. lol

I'm so sorry to hear your story. Did uou had svt before u were diagnosed with pots or vice versa? Have you always had tachycardia no matter your positioning? Its so much worse when I'm laying down because I feel the clicking that much more, when I'm standing I shoot right up. Where did you end up going for your ablation?

Thanks for letting me know a little about what you've gone through. it is scary. I'm not really an outwardly emotional person with my illness in my case but even my doctors yesterday commented that theyd never really seen me cry. I'm just scared.. I hate lack of control and this just adds to the already little I had left.

Kara,

then my overanalyzing fault kicks in and I start thinking... but then what, new meds? devices? ablations? Procedures?

It's EXHAUSTING! ..one day at a time...I guess we all just do the best that we can at that moment, right?

Chaos this is random, but i'm going to hijack my own thread for a quick sec,

do you have any brainfog and if you do, do you feel like the Topamax could be contributing to it?

Hi Rosey,

You deserve an I survived three tilts in a row medal. Sorry to hear that.

I would have kicked the bucket. I lasted 6 minutes until I woke up en route to the ER in a random hallway. .. during these three tests, did they give you any IV fluids or take any blood before, during or after by any chance?

Just curious.. did the dr who completed the test write the impression/diagnosis on the exam report?

Hang in there,

Sarah

Hi guys,

I wanted to update sooner but quite honestly haven't been able to move without my heart just totally going haywire. I've spent majority of the week crying (which isn't helping anything), in and out of the DR & ER, and running (haha) through a battery of tests I've had done 100 times.

I'm sorry for not responding sooner. I typically don't have "low peaks", but to be honest, I'm scared and just incredibly sad that something ELSE is happening on top of the hyperpots. (I took the risk of complaining there.. i'm done, sorry) Don't you all wish we had a DINET phone so we could check in?

They've got me on a holter again and have brought back my former cardiologist to keep a close eye on things until I get back to that EP this coming Tuesday. I'm feeling worse by the day...still can't sleep and mind racing, but too weak to stand now.

Thank You for the well wishes everyone. This may sound silly but I carry your thoughts with me as I'm driving to the appointments or in the waiting rooms. Every time I find myself thinking, "here we go again..." somehow it brings me full circle back to what you guys have all gone through too.

I Hope everyone is doing okay...

Sarah

Hi bambam,

thanks for the support!!

Is that your yorkie on the pic? I have two and a great Dane :-)

Hey Kara,

Thanks for the reminder to take it easy

Sarah

Fainting Goat,

I've been struggling also (with different issues), but I can identify with how challenging the day to day management of this is. It's exhausting. We all just really do the best that we can..

Do you typically have the pre-syncope or do you actually pass out? That all sounds so scary... you've definitely got my warm wishes and positive thoughts sent to you...

Regarding the Coreg, did you call your dr on call or maybe your pharmacist to see what they may recommend? Just trying to think of things that may help...

Hang in there
Sarah

Janet & Chaos,

this was taken from the link you posted, "candidates for a device that includes biventricular stimulation (CRT/ICD combination device) The CRT/ICD combination devices: Resynchronize the heartbeat & Slow down an abnormal fast heart rhythm"

Sounds just like me. I printed this out and am hoping dr. huang on Tuesday will be able to explain it further and if they specialize in it or not.

The great thing about the Cleveland clinic is that they offer a Same Day Appointment Service. Unfortunately, you aren't able to choose the physician you'd like to see. However, Chaos, like you mentioned, timing may be somewhat important so this may be a good option for me after I am at strong on Tuesday. We will see.

One day at a time and I'm really trying my best to not let my imagination/fear run too rapid. I'm trying my best to follow my doctors instructions until the appointment. I'm on a stronger dosage of Ativan this weekend and cant do anything to induce a higher hr and to keep my stress levels down because if my HR ends up exceeding 180 I have to go into the ER. That was our deal..

Thank you guys for your advice and help, I hope everyone is having a nice long weekend.