SarahA33

http://www.absm.org/bsmspecialists.aspx There are dr's grouped by cities and states that youll hopefully find in your area if you are interested. List of Board Certified Behavioral Sleep Medicine. I've tried everything else.. OTC's, RX's, therapy, sleep studies, meditation, yoga, baths, blah blah.. I have an appt next month with. Dr. Tajuddin. Keeping my fingers crossed. I don't think i've slept more than 2-3 hours of choppy sleep in years. I should be exhausted, but I'm not. Hoping this dr. will be able to provide some insight! Sorry if I semi-hijacked! Just wanted to give you all this list I found. I hope everyone gets some sleep tonight....

Hey Andy, Typically used for Myasthenia Gravis. taken from their website "MESTINON® is an orally active cholinesterase inhibitor. MESTINON® prevents the breakdown of acetylcholine by allowing more acetylcholine to accumulate. Acetylcholine is the chemical that sends nerve impulses to the muscle. With more acetylcholine, there is more control of voluntary functions such as eye movements, limited strength, swallowing and breathing." Since Mestinon is not FDA approved for Dysautonomia there really isn’t all that much literature showing it’s effectiveness on thermoregulatory control. It does help to lower your body temperature so that has to be the "golden ticket". My doctor has saved Mestonin as the next medication he’d like to try, and it’s not for the thermoregulatory control, its to see if it decreases my heart rate.. I have a friend with hyper pots who takes it for POTS to control the temp control/ flushing and It does lower her HR.. but the dosing has to be consistent or else you may have some unpleasant GI effects. Sorry I couldn’t be of more help, Andy

Kris, I am so sorry for what you are going through. Unfortunately I know exactly what you’re going through. I spent months being worked up for [heo, carcinoid, etc.. Have you had a pet scan, octreotide test, and MIBG scan yet? Those all pick up anything neuroendocrine. Good luck with everything and I'll keep you in my thoughts. I hope everything goes well...Be thankful that you have a dr. advocating for you because he/she will push things along for you. My relationship is just starting to get back on track. My fiancé stuck by me throughout the entire time but after that debacle was over he (we) hit a brick wall. I know this wasn't what he signed up for, but life doesn't work like that. I rec'd my Hyper pots diagnosis about a year and a half ago and have been doing better..and so has our relationship. Chronic illness can be heck on a relationship. Please hang in there

Andy, I started midodrine about 3 months ago and have noticed a decrease in my heart rate. The unfortunate side effects for me have been the goosebumps. They raise up on my arms and are actually kinda painful for a few min's....also, my extremities feel as though my foot's fallen asleep.. if that makes any sense. So my dr. says that this means the midodrine is actually working. I'm a hyper pots patient so this was quite a gamble but it seems to be paying off. Good luck to you Have you checked into Mestinon for the thermoregulatory control and HR?

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.

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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

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..

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

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.