Steph555

It seems like when I start to feel like I have an understanding of this illness, something changes. I have been doing the salt and fluid thing, but when I see that that diastolic number go up (and see my blood pressure in general jump up at times) it feels like maybe salt and fluid are the wrong things to do. But, from what I have read, that is what is recommended even for hyperPOTS people with higher BP's. Just feels wrong.

Gjensen, Have you always had a low pulse pressure? I'm curious what would cause this to start happening now when it hasn't been part of my "pattern" in the past.

I was wondering if anyone can help me out with some information about low pulse pressure. In the last couple of months I started feeling worse and thought that I was just going through a "flare." After paying more attention to my blood pressure readings (I had my POTS fairly well controlled and had fallen out of the habit of checking my bp regularly), I realized that my systolic reading is usually staying in the 105-115 region (sometimes spikes up) but my diastolic readings have gone up--usually in the high 80's to upper 90's. I have been given different diagnosis over the years (Neurally Mediated Hypotension, POTS, OI, hyperadrenergic). It feels almost like my POTS is evolving over time. I don't know if this low pulse pressure thing is a new "evolution" or what. I can't figure out what it different and why it is happening....and not sure what to about it. I have an appointment in a couple of weeks with a cardiologist. What should I know about low pulse pressure to be prepared to ask the right questions? Thanks, Stephanie

Janet, For what it is worth, I have hyperadrenergic POTS. Before I went to Mayo I had no idea about the hyperadrenergic part but we had just starting figuring out that I had an immune deficiency. Mayo docs told me to pursue the immune deficiency route because they felt that if my body was constantly having to fight immune battles, it would likely inflame my hyperadrenergic state. I am completely missing one IGG subclass and have specific antibody deficiency and the insurance approved my IVIG. I think that I have done much better with it...not sure if it is directly helping the POTS or just helping it indirectly because I am not sick nearly as much. Also, just to give you an idea of how the insurance works, we had my son's immune system tested and, as far as numbers go, his immunity was worse than mine, but the same insurance company turned him down the first time. My immunologist sent in a letter of appeal with documentation of his decficiencies and they reversed their decision and approved my son for IVIG. Good luck to you! Stephanie

Thanks so much to all of you for your help! I keep getting different answers from the insurance company as to what exactly I have to prove to their doctor to get the Adderall approved. It sounds like because it went as far as their doctor already, that it might be harder to get it changed now. I was told that I was having "narcoleptic episodes" after a sleep study years ago. I do not have the actual study results, just my doctor's entry in my chart after he spoke to the neurologist who did the study. The insurance company said that my insurance would cover another sleep study, which is frustrating because that would cost more than the Adderall and require me to go off meds first, become unconditioned, etc. , etc. I have to decide if my best chance is to prove the use of Adderall in POTS and my POTS testing or if I want to see if I would qualify for an ADHD diagnosis. I suppose the fact that that I have brain fog might be an indicator that I have ADHD as part of the POTS spectrum of symptoms. I do have a study that shows that I have very low dopamine levels, but I feel like no one is considering the chemistry at work here. They just want the diagnosis to be what they want it to be. I have a feeling that, even if I can make my case, they are going to make me try Ritalin first and fail it before they approve the Adderall. Has anyone tried both Ritalin and Adderall? Did they work the same for you?

I have upper eyelid swelling periodically as well. My doctor has never been able to figure it out. There doesn't seem to be a pattern to why it happens when it happens. I do have dry eyes. At one time, the dry eye was severe enough that I had to have puncta plugs. My eye doctor says that they have improved, possibly because I added a fish oil supplement. But the eye lid swelling is still a mystery.

We have done the "letter of medical necessity" and they keep asking for more. Now they are saying that I need an "on label" diagnosis (ADHD or narcolepsy) or the peer reviewed journal articles that support using Adderall for POTS. :-(

Alex, Thanks for the referral. I had found this article, but wasn't sure if it would count toward making my case or not. One of the tables showed that 4 out of 4 patients responded to Adderall but, in the body of the article, they never recommend it as a treatment and, in the conclusion, they state that there are no standardized treatment protocols. If anyone else has any ideas, I would love your input. Thanks!

I have been taking Adderall XL for two years and have found it to be extremely useful in controlling the headaches, brain fog and fatigue associated with my POTS. My employer recently changed insurance companies. Previously, my Adderall rx's were approved with no question. After the change to a new company, however, I was questioned about the dosage--I was taking 10 mg in the morning and another 10 mg at noon and the insurance company wanted me to take one 20 mg dose. We have unsuccessfully tried to explain that the single, larger dose can trigger the tachycardia associated with POTS. I was ready to concede and just take one 10 mg dose, but now the insurance company says that, after looking into the situation, they question this "off label" use of Adderall at all. They are asking for peer reviewed journal articles that support the use of Adderall for POTS. Can anyone point me towards some information that might help me make my case to the insurance company? The Adderall has probably been the single most useful component of my POTS management and I dread going back to life without it. Thanks in advance for any help anyone can provide.

I was turned down by the neurology department at Mayo three times over several years. I then went to a local neuro who referred me to the Mayo "POTS Clinic" and I was in within a couple of months. The "POTS Clinic" seemed to be an interdisciplinary program rather than a defined department. I had appts with cardio, neuro, endocrinology, etc. The person who was my "POTS workup" coordinator was based out of women's cardiology, I think.

Sue, they didn't test my levels during the TTT. I had a separate appointment with endocrinology (I think it was the day before my TTT) where they drew the norepi levels. They put in a IV access, had me lay down for a while, did a blood draw and then had me just stand up and walk around for 10 minutes and then drew blood again. My supine norepi level was 749 and my upright was 1461. While I was there, I didn't really get the significance of this and the doctor didn't really address it much. While I was there I also hadn't received a copy of my TTT result yet, so I didn't know that my heart rate went from 69 bpm to 118 bpm. I would have pushed harder for an explanation of what that isn't hyperadrenergic POTS if I had known those things at the time.

I asked my doctor if I could try Adderal because I had been shown to have low Dopamine levels and she was willing to give it a shot. It has made more difference in improving my quality of life than anything I have tried. I have always had afternoon headaches, brain fog, and fatigue and the Adderal has gone a long way in correcting that. I recently found out that I am hyperadrenergic, which I think Adderal would be contraindicated for, but it really has helped. And, for what it's worth, I do not have ADHD.

Dani, Were you tested at Mayo Rochester? I was there a couple of months ago. Like you, I did not respond on the TTT the way I did on my last one...I didn't feel well during it, but I didn't feel like I was going to die and my blood pressure didn't bottom out like it did the last time. My heart rate did go up over 30 bpm and I had a huge increase in my standing norepinphrine. From what I have read, I should have been diagnosed with hyperadrenergic POTS, but Mayo said that I have "Orthastatic Intolerance" and a "hyperadrenergic state." Since my sweat test and autonomic tests came back "essentially normal" they wouldn't give me the POTS diagnosis.

I had a series of them a couple of years ago and had no problem with them. The worst part for me was just getting the IV started since I am a tough stick. Just try and make sure to do plenty of salt and water in advance so your veins are nice and plump! I didn't get the huge burst in energy that I had hoped might come with IV iron, but my labs did respond appropriately and I have held acceptable levels for a couple of years now. Good luck!

During my Mayo visit they told me to go home and do 2 grams of sodium a day and then redo my 24 hour urine. We did that and I didn't come close to the goal they set for my sodium output. After that they told me that many patients need 4 grams of sodium and that it is safe to go up to 6 grams of sodium (or 15 grams of salt a day). I just got those instructions last week and haven't figured out a way yet to get that much salt down. And it just doesn't seem right....

Lyn, Thanks for your input. The workup at Mayo has tests in several areas. I had consults with a nurse practitioner in cardiology (she coordinates the POTS workups), a cardiologist, an exercise cardiologist, and a neurologist. It is a week-long work up and the neurology consult is not until the last day. All of the others defer to the neurologist...that is, no one will give a diagnosis except for the neurologist. They told me that my heart was structurally ok, set up an exercise program for me, and everyone just said "I can't really tell you anything about your results other than that I know they will be able to give you some answers and help you." No one told me that the neurologist was an autonomic neurologist, but when I looked him up his papers and classes seem to be in the autonomic area. In my "conspiracy theory" mode, I'm wondering if part of the reason he didn't give me the POTS dx is because my testing in the autonomic neurology lab was "essentially normal." I wonder if having a person with clear cut hyperadrenergic POTS but no seriously abnormal autonomic testing entered into their database messes up their research results????

The abdominal binder I got at Mayo is an "Aspen QuikDraw with Rigid Anterior Panel." The web site on the instruction book is www.aspenmp.com. I think it is actually design to be a post-surgical back brace. It is quite a contraption. You wrap it around your abdomen and it hooks with Velcro. Then there are corset-like strings you pull to tighten it even more. I haven't been successful wearing it under my clothes without looking like I'm pregnant, so I have resigned to just wearing it outside of my clothes. I didn't think it would make that much of a difference, but it really does. It makes grocery shopping much more tolerable for me. The doctor at Mayo wrote me a prescription for the binder and my insurance did cover it.

You may want to try a pilates mat workout. Those tend to have no standing poses and will give you good leg strengthening exercises that are all done while sitting or laying on a mat. I do a mix of yoga and pilates and find it to be very helpful.

I am supposed to wear compression garmets at all times except when I go to bed. At Mayo I got an abdominal binder that is like a corset worn outside of the clothes. When I don't want to attract attention with that, I wear high waisted Spanx to provide abdominal compression. I need to figure out what to do about leg compression. I hate the Jobst compression stocking and tach out before I can even get them on. My gp doc is a marathon runner and let me try some compression items she uses during marathons for muscle support and recovery. They are footless breath much better than traditional hose and are much easier to put on. These running clothes companies also offer compression calf guards, quad guards and compression arm sleeves. I called my insurance today to see if they would pay for the "runners" compression items. She said I would need a code for her to put in the system and find out. Then she said something about how I could buy them and then submit a claim but it would be out of network. Are there any compression garments we can get insurance to pay for that are not the standard Jobst stockings? Thanks! Steph

I was doing 50,000 units of prescription D for years. Recently, my doctor has decided that she prefers D3 so she is purchasing it and selling it in her office. I can't say I have noticed a difference...but I have had a lot of things changing lately due to a Mayo visit so I don't know if I would know that is what is was if I felt it. It will be interesting next time they do labs to see if it holds by levels as well as the regular D.

LindaJoy, I was waiting to see if some others posted some thoughts before I answered you because I wanted to see what their opinions were without biasing their answers. But, since I have no other repllies, I'll go ahead and tell you that the doctor I saw was at Mayo Rochester, so I would assume that he should be qualified to make the diagnois...I just don't understand why he said OI but not POTS. Can anyone give me some input on this?? Thank you!

I have been taking it for several years now with no problems.

I would like to introduce myself to the board and thank you all for the great information I have received from you all while I have been collecting information. I will try to keep this summary as brief as possible and get to the question I have for you. I am in my early 40's and have had health issues since I was in grade school. For years I went through cycles of pushing doc for testing, them telling me they couldn't find anything wrong with me and then referring me to a psychiatrist or psychologist and/or putting me on antidepressants. When I was 26 I had a very bad crash (after getting a flu shot) 6 months before my wedding. Six months after my wedding, I had to quit my job because of my illness. No one could find what was wrong with me but I happened to read an article on Neurally Mediated Hypotension in a magazine and a light bulb went on. I took the article to my grandparents' cardiologist and told him I thought I had it. He did a tilt table test during which my blood pressure dropped from 120/60 to 60/40 in 13 minutes (I didn't pass out, but at that point, the nurses, my husband and I all begged him to stop the test because I felt like I was dying). My resting heart rate was 70 bpm and my peak heart rate was 109. The record from the test says that after my blood pressure dropped my heart rate dropped to 50 bpm. The cardio told me I had NMH and put me on Toprol and told me to increase my salt and water intake. He told me that I would "grow out of it" even though I was 27 at the time. After doing some research I asked him if I had POTS and he said "no" because of what my heart rate did during the test. Keep in mind that this was 13 years ago. To make a long story short, I recently went to a neurologist to follow up on some possible neuro issues. She told me that she was making a referral for some testing for me, which turned out to be a POTS evaluation. After reading the information on POTS, it really explained a lot about my health issues. For this evaluation, I had another TTT. I could tell that it was different this time because, while I didn't feel well, I didn't become violently ill. I kind of expected that because I think I have learned to control my low blood pressure better than I used to. I don't seem to have severe drops as often as I used to, but my heart rate is still a problem. I did not have access to my test result at the time I had the consult with the doctor. He told me that I had Orthostatic Intolerance (but not POTS) associated with deconditioning and relative volume depletion. He felt that I did not have the same experience on the tilt table, not because I had grown out of it, but because I am much better conditioned now than when I had it done the first time. He said it didn't really matter if my diagnosis was OI or POTS because they are treated the same. However, when I got the test results I saw that my resting heart rate was 69 and my upright heart rate was 118, which is an increase of 49. Additionally, my supine norepinephrine was 749 and increased to 1461 when I was upright. Can someone explain to me why I didn't get a hyperadrenergic POTS diagnosis with those results? Thanks for any insight you can provide.