SarahA33

Linnie,,

What about a rowing machine or swimming? I really suggest when you go back to Mayo you link up with Dr. Michael Joyner (also at Mayo), he runs their exerc. lab there and is awesome.

http://www.drmichaeljoyner.com/about/

"Michael J. Joyner, M.D., is a physician-researcher and one of the world’s leading experts on human performance and exercise physiology." - taken from Dr. Joyner's personal website. I have his contact info if your interested

gemma didn't realize that you originally posted the CC or Dr B. post. sorry for repeating myself.

HI Gemma,

earlier this week there was a post titled, "CC or Dr. Bletshyn in NY"

http://www.drblitshteyn.com/contact.html

this explains the benefits of working with her at her office, it might help you answer some of your questions.

Her testing was done at a local Radiology Office and blood work was performed on site (or at the womens wellness building, i cant remember) I think you should give her office a call and ask those questions.. when traveling a great distance for a rare specialist as she, it's certainly warranted. Phone: 716-531-4598

Also.. regarding the CC...I am unsure about their Dysautonomia Clinic so I really can't give you my opinion on the doctor's who run it. I have heard that Dr. Jaeger is good but super hard to get into.

---

Hi Joann,

I was tried on many beta blockers for years. lebelatolol is fairyly safe drug, however, when it comes to hyper pots patients, It becomes then quite complicated. It made my flushing episodes worse, i had chest pains like janet, its an alpha/beta. I tried Bystolic and had very little benefit, also it's soo expensive. Unless your dr is willing to give you samples it becomes really pricey. Also. Like Janet, I currently take Inderal (Propranalol) as well as Clonidine. The difference Ive noticed off of the lebetalol has been siginifigant and I feel so much better

Good Luck.. keep up updated and I hope all goes well

Janet,

because of the side effects you had with a higher dose of clonidine, the patch may work very well for you.( Actually I think the name used for it is Catapress) ... bonus: It eliminates daily pills as you change it once a week. I mentioned earlier I don't have benefit from the xr's or la's so that's the only reason I cant use it. its really tiny and I kept it on my shoulder

I had a really great doctors appointment today and discussed with my dr's yours and kayjay's suggestions and decided to try the thigh compression hoses. I'm going to give it a shot and hope it helps like it has for you. Was it hard to get adjusted to them in the beginning? Hopefully they'll atleast make the rest of the summer a bit more bearable..

I take in about between 8-10g of sodium per day. depends on how I'm feeling. How about you? Do you ever have low pressures? I bottom out sometimes and then quickly raise back up.

Take care Janet!! Thank you for being so helpful.. its very much appreciated!

Hi there..

Just wondering if the clonidine patch (catapress) has been suggested? virtually i had very few side effects from it. You change it weekly so it elimates an extra few pills!

Ive come accross some of your posts since i joined and wanted to tell you that i think your son is very lucky to have you! Im sorry for the struggles you both continue to go through.. How old is your son?

it does sound like his neuro is really good

Hi Emma,

I have the same fears and also have to remind myself that tomorrow things can be better. It's hard to shift your thought process when you feel as though you are in a state of crisis. I too have bad days and wonder what's next.. Hang in there!

Anyway--- wanted to share a story with you real quick. My fiancé has A-fib and has had it for well over 10 years. He has rec'd two surgical ablations and is now able to control it with one medication now. Before his surgeries, he was given a device (kind of like a super mini ekg machine) that recorded his electrical currents and sent them to his doctor. I remember him doing this pretty frequently. He was shocked twice to try to get back into a normal rhythm but he would end up with the a-fib back shortly thereafter. It wasn't until he saw the EP's at a major university that he finally put an end to all that. We go back annually and the medical advances they have made from the year previously is really encouraging.

I think you sound like an awesomely strong person and you seem so determined despite the challenges. Even though I personally cant identify with the pots + a-fib, I know what I go through w/ my hyper pots and can't imagine adding afib. I hope your GP has been able to help. lots of luck

Emma..

Sorry to hear that you are going through such a challenging time. For the a-fib, is it possible for you to see an electrophysiologist where you are? You may have some more luck with someone who specializes in the conduction of the rhythms..

Janet,

Oops I forgot something else 160mg Propranolol

I hope that your doctor is open to you trying the florinef.. don't be surprised if your numbers initially spike. A lot has to do with the Aldosterone escape .. it will allow your kidneys to not deplete so much salt and then your pressures should stable after a couple of weeks. My diastolics are now higher because of the florinef but again, but it's a trade off because of the marked improvement. I never had any swelling or edema. Florinef can lower your potassium levels so I have mine checked monthly and haven't had to supplement with anything this far! Some doctors believe that dosing has to be broken up at various periods of the day to have a continuous effect

I can identify with you regarding the medication uses. I never even had to take a Tylenol before I got sick. It's certainly an adjustment to shift your thought process. I used to feel a sense of sadness when I would have to dispense my weekly doses into my containers but now I'm just grateful that there are med's out there to help me. For so long before I was diagnosed I thought nothing would ever work, so I am okay now with the fact that this is more than likely something I'll just have to do long term.

To answer your question, I do not have a compression binder. Compression socks though!

Okay.. so my exercise regiment is a bit quirky. The best thing I can do for my hr is the recumbent bike.. Slow paced walking was suggested, along with swimming and a rowing machine. I haven't tried swimming, but maybe Kayjay, you can share your progress with Janet about this? Just a thought! Also, the rowing machine made my heart rate fly with the movement of my arms. I have a difficult time raising my arms in general..it just made me feel worse. The thing is, I had to tailor it to fit my pots. I think an exercise plan designed for pots patients vs hyper pots patients has to altered to what works best for you. I ditched target heart rates. I also lift 5 lb weights. I try to keep up w/ this 3-4 days per wk.

oops!

Janet, I forgot to mention that along with the midodrine and florinef, I take a clonidine with it. .02 and 2mg ativan

Hi Sarah,

There was one other thing I wanted to make mention of in regards to my present exercise plan. The only way it works for me at all is to maintain the same morning routine of taking salt/fluids and medications and waiting for a while then doing my walk around the neighborhood. I do it early enough to avoid any heat because I am completely intolerant of heat and if I feel overheated at all that will cause extreme dizziness, nausea etc. I guess when I said I didn't have dizziness problems that is only in a very controlled setting. That would be one of the advantages of using a recumbent bike instead of walking out side since it would be indoors with temperature control available and also if you had a problem you would be in a safer environment.

Janet

OMG! Heat is horrible for me also. I really cannot tolerate any type of heat/humidity. I half joke about moving to Alaska.. The sweating, feeling like I'm going to throw up, and the sensation of falling backward and losing my balance is such a scary feeling. It's about 85-90 usually here with high humidity... I stay in my central air at work and home and very infrequently travel outside during the day. I passed out at K-mart in June.. It's nice when it cools off at night.. I get everything done then!

That's interesting about the timing of your medications and exercise. I should see what happens if I followed the same routine every morning before work. Problem is that morning's are my worst time of the day... between 4-10a. My heart rate is at it's worst and migraines throb to my pulse. It's awful.. I feel it in my teeth, ears, fingers.

Hi Janet!

Thanks for the med list! I am very curious about Mestinon.

I am currently on Florinef and Midodrine.

It sounds like you have been through a lot also. You sound so positive and grateful for the care you receive. That's so nice to hear. . . Im glad that Mayo has been able to help you. I will post the exercise rec's tomorrow morning for you

Everyone,

Regarding sodium intake w/ hyper pots, Thanks so much for sharing with me what works best for you individually. Honestly I have never met any fellow hyper pots patients before so I am taking in all of your experiences and information. I'm sure some of you can understand this part of the journey... since my pressures become so violatile, I was told by every cardiologist (all 7 of them!) that I saw to avoid sodium. So I did that for years. It wasn't until the pots diagnosis that my doctors told me to increase my sodium. It ended up helping. It may raise my blood pressure a few points but nothing major. The benefit of it outweighs the risks for me.

Kay You didn't hijack, thank u!

Thanks for all the diet info. I force myself to eat small meals and snack a few times a day because I lost a ton of weight due to fear of the stomach pain/issues. I just honestly have no appetite either.

Florinef has been a wonderful med for me also. Do your pressures run high on florinef?

So nice to hear that acupuncture has helped. I tried it only once. I receive chiropractic adjustments 2 times a week to see if that will help at all. I kind of sometimes feel like i'm trying to throw darts in the dark.

Maia,

sorry to hear about your problems with sleeping also. Do you feel tired throughout the day?

Also.. do you take any vitamins or anything?

Hi Janet,

Do you mind sharing how long it took you to "build up" being able to walk about 30 minutes? My goal is 15 min and I can walk around 10 min so far. I would love to walk... I used to walk my dogs all the time but am unable to now. I go very slow on the bike and it works well for me because I am sitting. When standing up my heart rate just goes too high. Dr. Joyner from Mayo in MN is wonderful... he's the reason I'm doing the bike. Its the first thing that's helped (phone consults over a few month periods with him..) He runs their exercise physiology lab there, I wonder if it's possible for your dr. in AZ to make contact with him before your next trip out there to see what his input is..He had a ton of ideas that I don't mind sharing with you if you are interested...

Postural changes are easier with the Florinef but still require thought and time. Stairs are still awful and unfortunately they are part of my daily routine no matter where I go. I do notice a lower heart rate when I do have to walk up the stairs but it takes me forever and I sometimes wonder if I'll pass out before I get there. I got stuck in the elevator at my doctors office at the hospital a couple of months ago and absolutely refuse to go in there again so Im stuck with 4 flights of stairs. it takes forever to get up there.

Also.. I was wondering if you be so kind to share your med list if comfortable with doing so.

It caught my attention that you mentioned pain not being your issue with sleeping, for so long I thought I couldn't sleep because of the pain. I agree with you that it has to be the NE surges because on better days with my migraines I still am unable to sleep. Do you find that medications that are prescribed to you have little or no effect sometimes?

Thank you for being so open to sharing all this with me.Its nice to know I'm not alone..

Hi all. You can add me to the HyperPots list as well. I have been assessed for a pheo twice. My b/p is very labile 80s/50s - 200/110. Until about a year ago I was up every two hours at night but after an increased dose of gabapentin I began sleeping 7 hours. I still battle fatigue though in spite of sleeping for longer unbroken stretches. I guess the quality of the sleep is poor as I have read about with some POTS, CFS and Fibro patients. I would sure like to find a way to increase my energy level. I'm still working on that.

I'm a huge Mayo fan as well.

Janet

Janet,

I often wonder what would be worse... my crazy energy level or feeling exhausted. I think they are both equally as frustrating Have you had any sleep studies? My friend with POTS had a sleep study done and was found to have a very mild case of sleep apnea and was given the machine.. it's helped her a great deal with her energy. She never noticeably snored or stopped breathing previously but was shocked to see the end results.

I'm glad you have found help in Gabapentin.. I was on that years ago but I should talk to my doctor about giving it another shot. Don't think I gave it long enough because back then I was quite impatient. Boy what a completely opposite lesson I've been taught over the last few years!

Also glad that you've had success at Mayo. I haven't decided if Mayo or Vanderbilt is where I'm headed in the future if necessary.. I think I'd end up at Mayo because of their multi-approach. Unfortunately,I am in Buffalo and traveling is a nightmare. Fortunately, thanks to the help of my doctors, this last year I have been taking a few steps forward and am happy. Just wondering who you see at Mayo and if you've found it possible to follow any of the reconditioning exercises. I can do the recumbent bike for a verrrry short period of time but it has helped with a few stairs. (very few!)

Sarah

Sarah- I see Dr. Fealy. I went in 2009 for 5 days and had a full work up though the pots clinic. I can't say enough good things about Mayo.

I was told by an expert at Hopkins that he was sure that I had a pheo- it was just to small to find. I was a lab rat for dr. Pacak at NIH for a week. I'm pretty sure I've had more radiation than any human should (

I test positive for pheos with the 24 hour urine so I'm guessing that I'm pretty hyper.

I'm not trying to be coy about my blood pressures but I try not to think about it. I get lows and highs. I think I've been 210/ 160 or 170. I seriously try to block it out

Today I was 98/64 and 142/100. Usually I don't take it but I'm feeling a bit breathless. Generally speaking my systolic is 110-140 and my diastolic is 60-90. It bottoms out when I'm sleeping.

Do you mind sharing your numbers?

I 100% recommend mayo rochester. I actually am puzzled when I read negative comments about the place.

Hi!

No, I don't mind sharing my numbers I can range systolic 150-180 and my diastoloic ranges incredibly much higher and rarely leaves the 110's-120's. That's the florinef.. they never went that high until I started that. I climb pretty high at times. These numbers don't stick. I typically am on the lower side of the high. It's really stubborn .. My pressures also bottom out when I'm supine at times, though.. I swear it's like a switch I can feel getting flicked off. It's awful. Not often, but sometimes I wonder if my body is trying to reset itself?? Does your heart rate still remain high supine?

Dr. Blytshen is about 15 minutes away from me. She is very good. but ive not seen her I know those who have however.. I take a 15mg daily dose of Midodrine prn.

You can add me to the list. I was diagnosed with hyperpots, but the only difference is that I have low blood pressure. I was ruled out for a Pheo, and was told it was just anxiety.

I use to sleep 8-9 hours without a problem. Now I have to work hard to get sleep just like you. I take ambien 10 mg at night and it gives me about 3-4 hours of solid sleep. Then I wake up ready to go. I will get a few more on and off hours. I too have lots of energy and I never need a nap, I have never been a napper anyway.

I have taken the CR ambien and it gives me another hour of sleep, sometimes. I might try it again, another hour sounds good

Hi! Thanks for sharing your story. Seems all to similar to mine. .Did they ever suspect a carcinoid tumor? How long have you been diagnosed? I also used to sleep around 6-8 hours a night. I never had any problems sleeping until I started having problems with my blood pressure. It's incredibly frustrating. Mainly because I have a ton of energy to do things yet I am unable to accomplish most of them because of the tachy and migraines.. I've found crossing my legs and shaking my feet help with the postural changes when raising from sitting to upright. The salt increase and florinef have been ultimately the most helpful with this. It's an almost impossible balance for me. This is one of my largest obstacles.

Ambien used to work for me when all of this first started happening. It was hit or miss, but I could average maybe 3 nights a week using it and sleeping about 4-6 hours through. Then after about 3 weeks it just stopped working. I tried the LA and didn't have any luck ( Now I know that Long Acting drugs have little to no effect at all on my system. I have much more success with shorter acting meds

And yes.. I completely agree that another hour does sound really good!!!!

Hey, Kayjay

Just curious.. who do you see at Mayo? I've had a ton of phone consultations with Dr. Mike Joyner who is absolutely fabulous. His advice about the recumbent bike was great and I also found really helpful his thoughts on daily sodium mg.'s. Are you happy with your doctors treating you now? How often do you head to Mayo?

Also.. now there are three of us just on this post who have described being screen for a pheo! All the literature Ive read and doctors ive talked to said that's a common first misdiagnosis. I'll never forget my former neurologist scratching his head saying, "Your a walking pheo!" lol. Clearly that's not the case, but the clinical features are so much the same. How high do your pressures get?

Ok , I am the person you can relate to! I have not been diagnosed with hyper pots, just autonomic dysfunction. One of my many first and oddest symptoms was never feeling tird even though prior to onset I was a 9 hour a night sleeper. Like you I couldn't figure out why I wasn't absolutely exhausted. Yet energy remained without sleep. At first hyper-thyroid or pheo was suspected but these did not check out. Melatonin was bad for me as well. Anything that works a bit...ativan etc.. caused BP drop and my BP is already too low. I am now 4 years in to this illness and am beginning to sleep a bit better. Maybe my body is finally wearing out, not certain. No answers but I too have read all the discussions on fatigue and wondered why I am the opposite. I have hypovolemia also, diagnosed at the Cleveland Clinic...you would think that would make me tired as well. Sorry no real advice...maybe just sharing will lead to insights.

I think you and I may have travelled down some of the same roads, angelloz. I spent months working with a cancer Institute because all I heard from doctor's was "You have a pheochromocytoma." Due to my labs and symptoms I was experiencing.

A few months later I had to make a difficult choice to leave certain doctor's and put my trust in new ones. It was the right decision, I was diagnosed and on the road to trying to make sense of all of it. Did u happen to have an Octreotide scan there? Just curious. After reading all the info on octreotide .

I become incredibly dehydrated to the point where I was in the ER for fluids. My doctors are in the process of getting the insurance company to agree to weekly at home in-fusions. That would change my life, much like for most of us. I've never underestimated the power of fluids. I take Fludro for this reason, which is tricky with the Hyper POTS since Fludro is known to raise BP's, esp. Supine. I have to be careful and monitor. I cut back on the dosage for a few days and play around with it.

Im glad that you are able to find atleast one thing that is allowing you some peace and sleep. I look forward to sharing more thoughts!

Cocoa Side Effects

Eating cocoa is LIKELY SAFE for most people. Cocoa contains caffeine and related chemicals. Eating large amounts might cause caffeine-related side effects such as nervousness, increased urination, sleeplessness, and a fast heartbeat.

I will certainly not be enjoying a nice cup of it this winter. Do you happen to know of any resources online that can help finding examples of foods to avoid? I'll try google-ing too!