kitt

Am just wondering if anyone in the U.S. has had insurance pay for IVIG? Thanks for sharing, K

Here's a link to the five biggest insurance companies. http://pharmacy.about.com/od/Insurance/a/The-Big-Five-Health-Insurance-Companies.htm Wellpoint is the company that is denying autonomic testing. But Wellpoint is (pasting): ellPoint's plans do business as Anthem Blue Cross, Anthem Blue Cross and Blue Shield, Blue Cross and Blue Shield of Georgia, Empire Blue Cross Blue Shield, or Empire Blue Cross (in the New York service areas). WellPoint also serves customers throughout the country as UniCare.

Here are some great highlights from the 2013 international dysautonomia research conference...Answers a lot of questions for people who are creating threads asking about these specific topics. http://www.dysautonomiainternational.org/pdf/2013ResearchSummary.pdf

Thank you for your well wishes Janet! I found this video featuring Dr. Sandroni speaking about pots and testing done at the Mayo Clinic. Think it will be of interest to anyone with pots.

Hi, Have you both had your catecholamines checked? They should be tested supine and then again after standing for 10-15 minutes. It measures your Noriphrinepine and Dopamine and other neurotransmitters and proteins... If your Noriphrinepine (NE) standing is 600 or higher you are hyperadrenergic. I mention this because those with hyper pots have particular problems with sleep. My NE is over 1400 and sleep is my biggest problem. I can't fall asleep at night and when I do can't sleep for more than 2 or 3 hours at a time. I too am "jolted' awake, (that's the exact right word that you used, thanks because I'd been searching for the right word to describe it)... It's just a suggestion. I think a lot of people with dysautonomia have problems with sleep, so I'm not suggesting you're hyperadrenergic because you're having sleep issues, but it's definitely worth checking into if you've not already! Best, K

Jan, thank you so much for sharing your experience with Dr. Sandroni, I really appreciate it. I had an experience with Mayo after multiple surgeries, (the last one performed at Mayo MN) and I was so deconditioned after being bedridden for so long, my doctor at Mayo in Fl. very strongly insisted I go to a well know pain clinic where they have you work with physical therapists 8 hours a day, five days a week and more hours on weekends. I was an inpatient there for five weeks, and the physical therapy was so intense I thought I'd never get through each day. I'd fall into bed at 5:00 p,m, and sometimes didn't go to dinner, I was just too exhausted. It was beyond exhausting. At the end of five weeks I felt like Super Woman! I was a new me...All due to moving my body so intensively for five weeks. So Jan, that advice she gave is priceless. I didn't have pots at the time, but I attended many seminars there about why the body needs to keep moving and what happens when it doesn't. Lynnie22, I'm sorry you didn't go through the pots clinic. I also heard the Mayo MN pots clinic were not seeing patients over 50, but shortly afterwards they stated they were not seeing ANY new patients because Dr. Fealy and Dr. Sandori were just too jammed with appointments. It was the Mayo pots clinic that told me there were only two doctors seeing patients, and that Dr. Lowe was no longer seeing patients. I'm so impressed that you got to see Dr. Lowe. IMHO he is the foremost experienced dysautonomia researcher and clinician in North America. I would have been blown away to get an appointment with Dr. Lowe Lynnie22, that's amazing that you had that experience. You mentioned that one of the tests confirmed a hyperadrenergic state when standing. I'm guessing that was the catecholamine test when they tested your noripinephrine (NE) as well as dopamine and a few other hormones, neurotransmitters etc... Do you happen to have the results of those tests? If you have them can you see what your NE test result was when standing? It would be interesting to know! Particularly if it over 600. Thank you again for sharing your experiences, and Lynnie22 thank you for the well wishes! Best, K

MedicGirl, Thank God you're not in pain with the help of narcotics. I don't think many of us can fathom having Stage 4 ovarian cancer in addition to having pots. You're an amazing woman! Additionally, your posts are always sensitive and supportive of other people, and your attitude is upbeat. Extraordinary! Best, K

Thanks MedicGirl! Thank you for sharing your experience. I really appreciate it. Am not going to Mayo for a Dx, already have a dx of hyperadrenergic pots, but am going to see a true autonomic specialist and especially for specific testing that I've not had done here. Mayo does an amazing job of not just testing, but scheduling appointments with various specialists. It would take a year at home to get what they can do in a week. And it will be done with all doctors involved communicating with the the other doctors. Anyone else have experience at the Mayo pots clinic in MN? Thanks! Best, K

Hi all, I'd be interested in hearing from people who've gone to Mayo in Mn and gone through the 'pots clinic' there. I have an appointment with Dr. Sandroni in January. Only 2 doctors at Mayo in MN evaluate adult pots patients, and they are Dr. Fealy and Dr. Sandroni, both are neurologists. Most of the people I know who've been through the Mayo MN pots clinic have seen Dr. Fealy, one with hyperadrenergic pots like me saw Dr. Sandroni. Dr. Sandroni has published 80+ papers on dysautonomia, and was the keynote speaker at the 2013 International Dysautonomia Convention in Washington D.C. Her hour long speech is on Vimeo. Anyone? Thanks for sharing. Best, K

To see Dr Sandroni's hour long speech, please visit this site. http://www.dysautonomiainternational.org/page.php?ID=151 Check the vimeos there. She was the keynote speaker. Natops, am glad you were seen at Mayo. Dr. Pittock is a neurologist, but unfortunately Mayo MN only has two autonomic specialists, Dr Fealy and Dr Sandori. Dr. Fealy and Dr. Sandori are the only two associated with the POTS clinic, and they're no longer accepting new patients. Hope Dr. Pittock was able to help you? Best, K

Dr Sandroni from Mayo clinic gave an hour opening lecture on dysautonomia at the 2013 International Dysyautonomia Conference in 2013. I see her at Mayo, MN next month. She is one of only two neurologists at Mayo MN treating pots. Has anyone seen her? Here's her speech from the conference. Best, K

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Thanks badhbt...I'm glad Ambien is helping you with sleep. Am sure you get the excitement of 5 hours of sleep. Thanks for sharing. I'm a weird one. Ambien makes me 'sleepless' at night. It has the opposite reaction. Fortunately doctors know about this, and they just nod their head...They've heard that the 'opposite reaction' to meds a lot. Ambien will make me stay awake at night and my mind races. Weird, I know. Just glad doctors are familiar with this. My sister has the same reactions to sleep meds, (and she's healthy) so I don't feel so 'weird', but I do wish it worked for me. It would be a big help. I have odd reactions to lots of meds...The most common reaction to almost all drugs is that I have to start at a very minimal dose and work my way up to a 'normal' dose. If I start at what's considered a normal dose, I'll have an 'opposite reaction'...Meaning if it's supposed to relax me, it will hype me up. And the opposite is true as well. I just start almost all new meds with a small 'chip' and then use a pill cutter and slowly work my way up. Thank you for sharing your experience with Ambien though. Am really glad it works for you. Strangely though, I've 'revisited' Ambien during the daytime when I'm desperate for a nap, and a micro dose seems to help with a daytime nap. At night though...Not. Maybe it's because I take other meds at bedtime, but for whatever reason I've not had a good experience with Ambien at night, but recently have had some success with taking a small amount alone for a daytime nap...About 50/50. So glad it's helping you! K

Janet, I took 300 mg of Neurontin last night and slept for 5 hours. That was a blessing. (Similar to the benefit I got from Methyldopa at 3mg)...Am very, very pleased for the heads up on it. As I said, I had the script, but never connected it to sleep. Am amazed you're taking 1800 mg per day of Neurontin, and very hopeful that you're able to tolerate that dose. Maybe I can tolerate a higher dose as well, and it may help even more with sleep and night sweats. (I did not have a sweat last night, unlike a similar sleep time with Methyldopa which including nightly sweats.) You're not 'pushing' Neurontin to me, because I have an MD who already pushed me...I just choose not to continue with the med. Am very hopeful now that I've revisited it. Could not come at a better time. Thank so much for sharing. This is the amazing grace I've experienced with Dinet. Janet, I too usually get a 'warning' now when I'm feeling about to faint, and can usually sit, (even if it's on the floor) before fainting.) I'm grateful for that. Occasionally though there's no warning, and I just hope for the best. Be especially careful in a hot shower washing your hair with you arms and hands held high. Interesting that you don't sweat with hyper pots and while in menopause. It really does illustrate how different we all are with hyper pots. I also read that hyper pots patients can have a very good experience with a med, and it can stop working for no discernible reason. It's a puzzle. Even to experienced doctors, hyper pots is a puzzle. Thanks for the heads up on Neurontin. Tonight will be my second night, and I'm hoping for at least another 5 hours. I'll let you know how it continues to go. Thank you again for sharing! Best to you, K

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Janet, Thank you for sharing. We share several issues in common. I'm also hypotensive, and have BP that is labile but often goes to 80's over 40's and 70's over 50's. Very difficult. Most of my fainting has occurred when I first get out of bed in the morning. Before I was dx I blamed myself, thinking, 'You must have gotten out of bed too fast...' But I've since read that those with very low BP have had that experience of fainting when that first get out of bed due to sudden postural change and low BP. Do you feel the Clonodine is exasperating your low BP? 3 mg of Methyldopa daily definitely caused my BP to go to low, and I began to suffer severe coat hanger pain, (associated with extreme hypotension)...Have you encountered that Janet? Since weaning down from Methyldopa the coat hanger pain has dissipated. I'm in a bad place with sleep. I'm unable to sleep for more than 2 hours at a time, and often awake in a severe sweat with my hair plastered to my neck, and my nightgown soaked. So odd, because prior to hyper pots I didn't sweat. It was odd. I didn't even wear deodorant. I could horseback ride with friends for hours on trails and be dry as a bone. I always thought it was a little odd, but THIS extreme sweating is horrible. I also get chills sometimes, so to answer your question, Thermoregulation is a huge problem for me too. You mentioned Neurontin for sleep, and that's very encouraging to me! I have a prescription for it that I filled, and didn't really give it a fair shot, and abandoned it. It was prescribed for neuropathic pain, and I didn't find it to be very helpful for that. I still have the script and I'm definitely going to restart taking it based on your experience with sleep! Thank you for sharing that. Speaking of scripts prescribed that I 'abandon', I literally have a small shopping bag filled with scripts that I didn't find helpful. Unless the experience was horrible, (all beta blockers, mestonin, labetalol, which I threw away), I put abandoned scripts in the shopping bad. This will not be the first time I've gone back to a medication to give it another try. I'm thrilled that you shared that Neurontin helped you sleep! I'm going to get it out tonight and and try it. Btw, After sharing that my internist told me my pulse was so fast (120) was because I was petite, (Before I was dx with pots,) I Googled it after I posted about it recently on Dinet, and I found a reference to women who are petite tend to be the ones that tend to have sympathetic excess. I bookmarked it. It wasn't in a peer reviewed journal, but I found that interesting. I can tell by your picture that you're petite. I wonder how many of us, (especially those of us with extreme hyper pots, NE over 1000 are petite?) Just curious. What I've learned is how incredibly different those of us with hyper pots present and how differently we respond all respond to the same medications. I had someone on Dinet once tell me it was impossible that I had hyper pots with hypotension, but there are many of us who present that way. Janet, do you take Clonodine at bedtime? You mentioned it caused fatigue. I agree, so I'm taking it at bedtime. Have you tried that? I'm still on a tiny dose. ( .5) so it hasn't helped yet with the sympathetic excess. I don't have 'jitterness' but I'm glad it's helping you with that. I'll let you know how the Neurontin works for sleep. Are you able to sleep through the night, and do you experience night sweats? Sorry for such a long post... Best, K

Thanks Janet for sharing that. I had a bad reaction to Mestonin, but am glad it's helping you. (I asked to try it based on encouraging comments from people with pots, although not hyper pots). Had a very negative response. My hyper situation is extreme and even if I didn't have pots, being in an extreme hyperadrenergic state is over riding my hypotension and resting heart rate of 120. So am currently focused on trying to get the sympathetic nervous system to 'shut up' and then I can focus on the other pots issues. Frustrating because the two frontrunners (Clonodine and Methyldopa) are both designed for high BP, so they make my already low BP worse. Thanks for sharing that you can't tolerate antidepressants. I'm willing to try based on the theory that they address NE. May I ask you how much Clonodine you're taking Janet? Am glad it's helping you. Do you use the patch, pills or a combination of the two? Am in the process of weaning off Methyldopa onto Clonodine. Glad you're getting some relief with your current protocol. Are you able to sleep through the night, and able to regulate your body temp? Best, K

I've studied articles by Vandy, Mayo and Grubb, and neither Midodrine nor Mestonin are rec by any for hyper pots. (Studies on NE and muscles don't affect NE plasma levels apparently.) Here's an article by Grubb with rec drugs for both pots and hyper pots. (H for hyper) Has anyone benefitted from the antidepressants he listed? Open the window he has in this article to see what drugs he recs for both types of pots. http://circ.ahajournals.org/content/117/21/2814.full In the hyperadrenergic form of POTS, patients often respond best to agents that block norepinephrine or its effects.9,10 One agent that is particularly helpful is clonidine HCI in either pill or patch form. We start the oral form at 0.1 mg PO 1 to 2 times a day and filtrate upward. The patch form of clonidine is quite useful because it provides a constant and continuous amount of the drug for up to 1 week at a time. The combined α and β blocking drugs labetalol and carvedilol are quite useful in some patients as pure β-blockers may exacerbate symptoms (because of unopposed α receptor stimulation). Methyldopa has been reported to be useful in some patients, as has phenobarbital. In addition, both the SSRIs and norepinephrine reuptake inhibitors are useful in select patients.

It's interesting. There's been discussion on this before, and it's an interesting topic. Some people have had neck surgery to try and 'fix' pots, and have not been helped. I look forward to any new illustrations or ideas you have. Thanks for sharing.

I gave up sugar almost 8 years ago and it's been the most profound thing I've done for my health. Here's a 60 Minutes program on how toxic sugar is.

Sarah, Labetetlol also made me feel worse. Badhbt, Propanalol also was awful for me, dropped my BP to 80 over 40, as did the first BB i took, Attenenlol, (too tired to spell check). Methyldopa did help, but it lowered by BP too much also, (it's a med for high BP) but dramatically lowers sympathetic excess. As I mentioned though, the side effects are very difficult. Am just weaning up on Clonodine and weaning down dramatically from Methyldopa so feel horrible. Clonodine is great at keeping my tachy down. My normal pulse is 120 sitting....Crazy, I know. Btw, before I was dx with pots, I said to my internist once, 'Your nurse just told me my heart rate was 110.' He said, 'That's nothing, it's usually 120'...I said isn't that just way too high? He told me, 'Well, you're very petite and a lot of petite ladies have fast heart rates.' Wow... He's still my primary though, because I basically just need him to act as a home base, which he's good at. But what a crazy thing to say.

Interesting and unusual article Alex. It's from 2004 and I've never heard of Midodrin used for CFS in patients without a confirmed POTS dx. Surprised me. I didn't recognize any of the names from the bottom of the authors, with one exception and that's the name Fuduka, a controversial person in the CFS world. But don't think that fact would be interesting to many on Dinet. I bookmarked the article though. It surprised me that much...That a doctor would prescribe Midodrin to a CFS patient without a dysautonomia dx. WHY though does Midodrin help hyper pots. I understand it helps with vasoconstriction and can raise BP, but how does it reduce sympathetic activity? Reducing sympathetic activity is the key to treating hyper pots, and currently Clonodine and Methyldopa are the frontrunners for treating this from of pots...With Vandy favoring Methyldopa and Mayo favoring other methods. Methyldopa is a double edged sword IMO...I've been on it for many months, and it was helpful in the beginning, but if you Google the side effects you'll get an idea what I'm talking about. It would be a shorter list to show what are not side affects, rather than what are. Does anyone have any info on Midodrin and reducing sympathetic excess?

badhbt, what meds are you taking for hyper that help you hyperpots? Methyldopa is actually a med for high blood pressure, but it's used for hyper pots because it 'shuts up' the sympathetic nervous system. Several issues though...One if you have low BP, like some of us do, Methyldopa makes it even lower and causes intense 'coat hanger pain' when BP goes too low (explanation of coat hanger pain here...http://www.nature.com/sc/journal/v40/n2/full/3101259a.html) Methyldopa has a laundry list of side effects, and several side affects have caused me to start to wean off. I've had very poor results with all beta blockers, and very poor results with Labetalol. What's helping you with the hyperpots and low BP?

Meant to say I'm trying to lower the Methyldopa and RAISE the clonodine. Methyldopa has side affects I don't like. Am tolerating Clonodine at a very low dose. Like some others, I have to start meds at an extremely low dose and work my way up. Am only on .5 of Clonodine, but 3. of Methyldopa, and have recently gotten it down to 1. I really don't like Methyldopa. I also have low blood pressure. Seems there are several of us on Dinet who present with Hyperpots and low blood pressure. An unusual combination.

I have hyperpots too. (NE over 1400) Taking Methyldopa and Clonodine. Trying to lower the Methyldopa and lower the Clonodine. I haven't tried Midodrine. Does it have any side affects for those taking it? My biggest issue with hyperpots is lack of sleep and night sweats. Difficulty falling asleep and difficulty staying asleep. Thanks to all who can share more about their experience with Midodrine. Best, K