SarahA33

Sorry... its spelled Zivadinov. Brain fog and forgetting to proofread

Okay, thank you!! no, it's actually Dr. Zobivinov. I know Dr. Zamboni as the pioneer. Dr. Zobivinov is a neurologist and focuses on neuroimaging.

Alex, http://www.synergyhealthconcepts.com/ccsvi-3/#!prettyphoto/0/ This is where I started when researching the procedure. After about an hour of research, I found an article in the nypost .. (I cant find it now, sorry), but it mentions the largest study on this procedure being completed by a physician named Dr. Zobivinov. Are you familiar with him at all? He's literely 10 minutes away from me. My concern is pretty obvious if you research him or know anything about him, he;s an MS expert. Actually, Buffalo has one of the highest MS rates in the country so it doesn't surprise me. Thanks so much for posting this, Sarah

Hi there, Andy, How are you feeling? Did you end up trying the midodrine? Sarah

cbakl, Hang in there. I've also drawn the same conclusion regarding my diagnosis. Hyperpots just typically doesn't disappear, however that doesn't mean that it can't improve over time. I'm steadily making progress in the right direction but have my set backs and really difficult days. Today is one of them.. my entire family is at a birthday party and i'm stuck on my ipad drinking pedialite. Good luck moving. That has to be one of the most stressful things to do. Other than the fact that I hate change, it's a hassle and so consuming. Wishing you better days.. Sarah

Hi, I wish I could provide more advice for what you are going through. I'm really sorry that you've not received relief. I know that feeling all too well! Some of the symptoms we share in common: I have daily headaches/migraines and they are just awful. I have a lot of blurred vision due to the migraines but I also have it in between the migraines so I tend to attribute it to my brain fog from the pots. I no longer experience GI symptoms, but for years I did. I dropped weight like crazy and the pain was pretty intense. I was put on Pentasa and Asacol and that seemed to work. I stopped the meds and am still doing well with the GI stuff. Migraines and heart rate still continue to be my biggest battle. How is your heart rate and bp now? Have you seen a specialist in dysautonomia/Pots as of yet? Best of luck to you.

Hi Kitt, I also have had a positive long term experience with a Benzodiazapine. However, mine has been Ativan. I do not have any sedation from it, however, I do have a response in lowering my heart rate significantly combined with my other medications. I wanted to ask you a couple of questions from your recent posts regarding klonopin simply for clarification.. I'm going to quote what you mentioned, " Klonopin seems to work better then Clonazepam." ..Isn't clonazepam a generic for klonopin? Do you think the name brand works better than the generic? Also, I know that Klonopin is a controlled substance. Atleast that's what the labels say on my bottles I get filled monthly as well as the pamphlets that come along with it. It's not just in NYS where I live, it's a federal law that it's controlled. That is for all types of benzodiazapine's as far as I know. I'm glad you have also had a good experience regarding the use of a benzo, it has really helped me also. Good luck with everything! Sarah

Hi Cala, Midodrine is a very quick and short acting medication. I am on 10mg 3x per day. For me, it starts acting within 20-40 minutes. I take this dosage scheduled daily so I really cant give any personal insight on the "as needed" basis. I will tell you I experienced some side effects that were tolorable and have deceased with time. Tingling scalp and hands. I constantly dropped things for a while because It felt like my hands were asleep. Good luck.. i hope this helps you!

Hey Alex, I've seen 2 EP's and the high numbers have been recorded on the holter monitors so many times. Only suggestion by one was a sinus node ablation which after getting the pots/hyperpots diagnosis would actually make me worse. In the beginning it was thought to be innappropriate sinus tachycardia. I know my elevation numbers are alarming. I've always had a much higher resting heart rate. Unmedicated it ranged around 130-140 most of the time. It was terrible.. the medication combo I received after being properly diagnosed has resulted in much lower numbers majority of the day. It's when my medication wears off that i notice more of an increase but long acting and extended release medicatications have little to no effect on me. I was on Lebetalol 2,400mg every day and couldnt understand why i was getting worse -- it's actually an alpha beta blocker and a pure peta (propanolol i'm on now) was what ultimately was needed. Your not worrying me, thank you for caring. I appreciate it.

Alex, You described the feeling like a huminbird in your chest so perfectly. I've used the term butterfly, but i like yours so much better! It's a terrible feeling.. but honestly, I've learned to adjust to such a higher rate that when/if i drop lower, i tend to feel so much worse. I rarely drop low but when I do i can't help but stand up and pace trying to get it higher again. Frustrating LeJones, I do get that high from standing up on my pretty bad days, and upon exerercution is similiar. I've had tons of holters, echo's, stress tests, ekg's, 3d mri/angio of my heart and there is slight enlargement of the left ventricle but i'm not symptomatic of that at this time. Its probable cause for slightly enlargement is the hypertension/tachy. I've never gotten ananswer other than I have a higher resting heart rate and that it's the postural adapation and hormone surges i experience that can cause it to increase.

Hey Rich, I think I misspoke or there has been a misunderstanding. I actively am dealing with my illness on a daily basis. I'm in no way in remission, however, I am improving now that I've been correctly diagnosed and given the proper medical treatment. I have been relentless in fighting to figure out what has been going on for 7 years and am exhausted at this point. I'm sure majority of people understand where I am coming from. I need a break from the 30+ doctors I've seen. I actually just started counseling for chronic illness to learn how to manage the psychological and emotional toll this has all taken on me and I'm already drained. I'm really glad to hear that you continued to fight for yourself and I completely agree that we have to be our own biggest advocates

My apologies AGAIN to everyone for duplicate texts and clearly that first one didn't make much sense cause I didn't plan on sending it. mods could u please erase that one?

Hey there racer I understand you refusing medication for that reason.

Okay so I'm guessing your going to stick with dr barboi at rush and not continue w/ mayo? Especially if you have faith in this dr at rush and he's local it can work out amazingly well. I've been to a lot of the major universities and clinics but it's been here in buffalo. You mentioned previously sports exercurtion descriptions of your bp's.. Since ur already affiliated w mayo, there is a dr in MN who would be totally interested in your case. I've consulted via phone calls with him on an exercise plan that would work for lil ol hyper me... The generic exercise plans put there focus mainly on general pots and I'm just so different and put myself into a huge flair following the classic regimin and trying to maintain target hr's.

Racer, I'm truly sorry you had such a $&@:! Experience at the ER. With the issues you had going on you mean to tell me they couldn't keep u in your own room? I'm assuming privacy would have been more than appreciated, and a shower. I do hope that the meds were worth the wait and can provide you with some relief. I have two suggestions that could be of some help in the future.. first...Instead of the ER, do you have immediate care/urgent cares you could choose instead? If you Need management of your symptoms Only, (today sounded def like an er visit) minor things like iv fluids, etc. it tends to work well for most people...although a us potsies aren't like most people ......And the second suggestion is to talk w/ ur doc about having a script for having a pain med to control your symptoms at home in case emergencies. Sarah

Thanks for the Advice Rich. I appreciate you taking the time out to let me know what to look for in the autoimmune arena, it's the one specialty I've never consulted in. I think in the future it would be a great option for me. Truthfully, and I know this sounds like im lazy, but i'm not.. im just so tired of doctors and appointments and tests. Ive been doing fairly well and steadily making improvements . Sarah

I must've taken it wrong so I apologize. I am glad that you are happy with care your receiving at Mayo.. it seems like they're trying a lot. its all about trial and error and it's hard to not get wrapped up in it all sometimes. How often are you scheduling to go back there? Im super happy with my care here but Mayo would be my only next option if needed, problem is traveling though. Its so hard to travel long distances. Anyway... My BP fluctuates a ton. I cant even wear the 24 hr BP cuff because it cannot pick up a reading. It's pretty frustrating. Do you have that issue also?

when I exercise it def. gets up to 180's range, but sometimes just throughout the day it'll start bouncin away. Laying flat is all I can do to help it but I really just have to wait for it to be over. I do try exercise a few times a week but haven't made it past 3 days at 10-15 min intervals w/ the recumbent bike.

cbakl, My doctors were hesitant but in the end thought the benefits outweighed the risks w/ midodrine. I don't want others to not try it because it's contraindicated, not all patients w/ hyper pots are the same. that's how it is w/ a lot of meds. Sometimes, all that's left it to think outside of the box and I'm way better off because of it. Midodrine has helped me tremendously but I wasn't put on it because of lack of local doctor's knowledge.It was a choice, just like any medication, especially those of us with POTS react strangely or differently to. Glad you are having successful results with Mayo Clinic.

Hi Lynnie, Im actually embarrassed to list the amount of doctors ive seen and tests Ive had. It can be such a discouraging process. I have improved so much since I found my team. They are wonderful and aren't afraid to try out of the box treatments. Standard just doesn't seem to apply to us all the time. I want you to know that there are doctors out there who care and it may take some time (took me 7 years) but I did. You will get through this, the saying "this too shall pass" really does apply to POTS because our bodies are always reacting differently to the same meds (ie, propranolol) I, too, have to self adjust my dosages with this med along with the clonidine depending on what my BP looks like that day. Hang in there til Mayo. Good luck with everything... things will look up

midodrine works really well for me. So did florinef.. I'm on such a small dosage now because my doctor think its time that I go off of it. Propanolol is also the only medication that works well for me. I think its b/c its a pure beta. Alpha beta's (labetalol) made me much much worse, and diuretics and calcium channel blockers did absolutely nothing for me.

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Hi, Have you tried a low dose beta blocker -- inderal -- for a prevenative, or like another member suggested an anti-seizure med ( i used topamax) and lastly, antidepressents (like zoloft, etc).. and I've even tried Botox. Daily Magnesium Supplements help as well. Do you have a cause for your migraines?

that's just terrible. I have a rather high resting heart rate, so I average (with medications ) 110-130. However, it has shot up to 220. It always goes back down but on my "bad days" i bounce around.. Of course even when I just stand up it goes up. Everyone is different. If this isnt normal for you maybe you should call your doctor. Good luck, Sarah

forgot to add Zantac and Zyrtek (H1 + H2) Blockers