Kellysavedbygrace

I take high dose antihistamines (20-30 mgs Loratadine, 80-120 mgs Famotidine) And Adderall 10 mg 2-3x day--- which I'm taking for POTS but seems to be a super vasoconstrictor for me when my body will absorb it. For me Vasodialation is a big issue that antihistamines and other vasoconstrictors really help. I'm trailing low dose aspirin therapy. I also take Mestinon 60 mg 2-3x day Clonazepam .5 mg at bed Vitamin D

Top helpful treatments (other than exercise and IV saline) for me: -Adderall - high dose antihistamines. (Loratidine 20-40mg, and Famotidine 80-120 mg) - massage of neck, back and feet when I'm crashing helps to stimulate parasympathetic system. - high salt diet and high caffeine diet

Alex, I agree you should question the hypovolemia assessment without a Total Blood volume test. And I'd add to the list of salt questions- Since nerve conduction hinges on the sodium potassium pump located in the cell walls of our nerves, why aren't we also increasing potassium? Maybe someone on here knows this answer. Rama, You probably already know this but the catalyst for Florinef's volume expanding power is sodium. Without sodium Florinef will not be activated in the system so your craving makes sense.

It is a common misconception that salt and fluid loading is helpful because of hypovolemia. But, in fact that may or may not be the case. I used to think that is why I needed the extra salt and fluids but have been tested at two major autonomic testing centers and discovered I had normal total volume. As a result this was something I recently discussed at length with one of the docs at Vanderbilt. Clearly salt helps me, and saline IVs are my source of bailout and prevention - so the big question is, "Why?". Only about 1/3rd of us are found to be hypovolemic but more than half of us do well on a high salt diet. Vandy is actually conducting a study about this now. I know salt helps with my BP as I tend to be hypotensive but then why does it help some who are also hypertensive? A few weeks back Rich posted a link to a research review out of BU about salt improving BP because of increased adrenaline not increased blood volume. It has also been suggested that sodium is not processed properly in the kidneys. All this to say, we don't really know why it helps or doesn't help.

Salt is a huge help to me and I aim for 5-7 grams a day. I make sole water (highly saturated pink hymylayn salt water) and start my day w 2 tablespoons of that in water. Throughout the day I highly salt my food and during episodes or times when I feel lightheadedness while out I will put a pinch or two of salt under my tongue and then drink a glass of water. Like Dizzy when I don't get enough salt my BP tends to drop more easily into the lower ranges. (80/50) Vanderbilt is currently doing a study about high salt diets in POTS. A friend I made while there was on the low salt visit and she was not doing as well as the time when she was on a high salt diet. Afterwards, when emailing from home, she mentioned how much better she felt on her normal high salt diet. My guess is that how we respond to salt is one of the more heterogeneous features of POTS.

I only have alcohol on days when I'm feeling fairly good and as others above have said I make sure to Really hydrate well. (1-2 large glasses of water per drink.) I actually notice a positive effect- perhaps relaxing the nervous system. During the first several months after onset I avoided any caffeine or alcohol. After a while I started adding them back slowly. I find both help. However, I have coffee almost every day and alcohol more like 2-3x a week. Usually a glass or two of red wine but if I'm feeling really good we'll go out and have a cocktail. (funny, expresso martini is our drink of choice...hmmm didn't dawn on me till now the caffeine connection....interesting.)

When I'm working out in any upright position I often grey out. My go to solution is "sit stands", something my trainer taught me. I find a chair and do squats over the chair quickly. Within 30 secs or less my vision in restored and my lightheadedness is gone. Something about that manual pumping of blood back to my brain is so helpful.

If you really want to rule out MCAS it is helpful to travel to a mast cell specialist such as Dr. Akin, Dr. Goodman, Dr. Afrin, Dr. Castelles, etc. Because it is important the lab draws and processing be guided by a mast cell specialist. Many of the mast cell specimens need to be collected in pre chilled vials/containers and kept at specific temps as the metabolites are very heat-liable often losing their value within a minute or two at room temperature. In addition a majority of these tests need to be sent out so packing and handling of the specimens in transit is delicate. The reason it is helpful to travel is that the mast cell specialists have labs they work with who are trained in collection and handling. It is difficult to get a local doc to order the right tests and even more difficult to get a local lab to follow these very detailed protocols. If you can't travel and your doc is willing to consult w an out of town doc, make sure you select a lab who is willing to follow the drawing, handling and shipping protocols.

Puppy, you are such an encouragement to me. So sorry u had that bad spell but glad they took you seriously. Please let us know how you are doing when u can. -k

Kitt, is your dose really 15mg? My script is for 60mg 2-3x a day. I usually just take 2 but that seems off. I'm glad to hear you've seen some improvements. I agree w bananas to hang in there through the titration time if you can. If you find u can't maybe go back to original dose and consult the doc but don't give up. Btw- when I was at Vandy I had to get off the Mestinon again. I noticed more benefits of Mestinon being off it than on. I think for me the improvements were so subtle. Most helpful benefits- lower fatigue, fog, crashing. I also noticed some side effects went away- reduced sweat and digestive issues.

One of the things that I love about this forum is how encouraging and positive most everyone is. Thanks for sharing today. The unusual thing is that we have one of the most difficult conditions to deal with because we face so many unknowns. There is no cause, no cure. Most local docs aren't well educated in it and the out of town docs who are don't have a magic bullet for us. Your quote is a good reminder about staying positive which is I think one of the most difficult part of our journey. One of my favorites is, "I don't understand why but I know God does. And I trust He has a purpose in all things.". When I talk with people in my life about my situation, diagnosis, etc. I almost always share this and then follow it with examples of how this difficult journey has been a blessing to me. Here are a few ways: - I'm now home everyday when my kids get home from school. Instead of being at work I'm almost always there for them. - It has helped me really rearrange my priorities. I used to have many, now I have 3: God, my family and taking care of my health. - In March, my husband calculated that we had 526 hrs in donated driving time from family and friends to take our kids to and from school and sports last Sept- March. We are so blessed by the love and support of family and friends. (as a side note- I live in the same hometown where I grew up, my father and his father grew up. So I know that is rare- but I know that all of us have seen some positives in this storm, some ways we find ourselves "dancing in the rain.)

I use IV saline on average once a month. I use it either as a "bail out" when I'm in a bad crash or as a preventive measure such as before travel or before a stressful event. (ie: Christmas eve). I have a script from my POtS doc for ultras of saline within 2-3 hours up to 3x a week. (The most I have needed is 2x.) It is one of the few things that almost always gives me 24 hrs of significant improvement. It is a tough treatment to depend on bc I'm a tough stick most times. And although I hate needles it is one of the most critical treatments for me. In a bad crash it is the only thing I've found that even comes close to helping. In that state it is as if my digestive system shuts down and nothing gets into my bloodstream orally. I've been blessed to have a primary doctor who does also does clinical research. The first floor of the building is the research lab and the second floor is his practice. So when I'm crashing I can call Kim, one of his research nurses to get an IV. Usually I can get in the same day. When I am out of town I usually end up going to the hospital.

Mast Cell Activation disease (MCAD) is thought to be a mutation of the mast cell (or allergy cell) that causes inappropriate "activation" (or degranulation) of the mast cell which releases chemical mediators into the system. Mast cells are a part of the immune system located throughout the body and when they operate normally they release various chemical mediators (such as histamines) in response to an invader (such as an allergen.). This is why many people who have allergies take antihistamines to reduce the effect of histamine release in their body. But histamine is just one of an estimated 60-200 chemical mediators experts believe are inside the mast cell. Some known chemical mediators and cytokines that have been identified in the mast cell include: Heparin, Tryptase, Chomagranin A, Prostaglandin D2, Luekotrines, etc. So when someone with MCAD experiences mast cell degranulation the symptoms are often widely varied and heterogeneous. This makes recognizing MCAD with specific symptomatic complaints such as allergies, sinus issues, flushing, etc. challenging. In fact, the best way to identify if a patient should be screened for MCAD is this: Do they have multiple symptoms in many or all organ systems of the body? If so, MCAD should be considered as a differential diagnosis to be ruled out. I noticed you mentioned allergies to sulfa, headaches and a unique constellation of sinus problems. I also see "POTS" listed as a Dx for you. Do you have other problems w organ systems?

By the way, welcome to the forum. This is a great place for information and learning from one another.

I have both POTS and Neurally Mediated Syncope (which can also look like Othostatic Hypotension.). Either way a drop in BP does not change the POTS diagnosis. (I know there are some older clinical definitions that say, increase of HR by 30 bpm or more without Orthostatic hypotension, but in reality about 1/3rd of all POTS patients also get a drop in BP (some temporary, some sustained) upon head up tilt. As others have said, it doesn't much matter because both are forms of Dysautonomia. And all dysautonomia is associated wirh erratic hemodynamics. Now, the key is to figure out what is causing your autonomic dysfunction and try to improve that condition.

Thanks much. Ronny, my son is recovering well. He has one more week of laying low but his appetite is back. Yeah! Dr. Biaggioni did not say why the caffeine was helpful for some but he did say that many of the things that help us seem to be counterintuitive such as a high salt diet, caffeine and meds that stimulate the sympathetic nervous system. Rama, is the sodium balance you are talking about measured by renin or Aldosterone?

I am not currently taking this drug but it was recently recommended to me by Dr. Biaggioni at Vanderbilt's Research center. It was recommended to me to help control the exxagerated sympathetic response I have. Instead I am going to trial a similar drug that many POTS patients have had success with, Clonidine. This was recommended to me by my POTS doctor many months ago and I did not try it. So I will try the Clonidine first and if it doesn't help or I have side effects I'll try the Methyldopa. Sorry I can't be of more help.

I had a sudden onset Sept 2011. One of the less severe symptoms that I noticed during my first hospital visit was bilateral constant ear ringing. Over the last year and a half it has been my constant companion. When I am more symptomatic it increases in severity- both volume and additional pitches. (I've noted up to 4 different pitches.). Funny, I too find escape watching Netflix. When I am really tired and overly sensitive I listen to white noise for babies. Helps me relax. I discussed this with the physicians at Vanderbilt's research center and at Cleveland Clinic- none have had any insight as to the connection between Dysautonomia and tinnitus. I just ignore it because it is a symptom that is so small in the scheme of things. But no doubt it is connected. I've never had ear ringinglike this before.

Back home now... A little over a week since I left Vanderbilt. On the way home my hubby took me to Pensacola to see my POTS doc, Dr. Randy Thompson. He helped me get scripts for the new meds to try and adjusted the exact types, doses based on his experience. And then I came home...this house is loud, with four kids and their friends, in comparison to my quiet private room where they fed me and cleaned too. Then Monday my 9 year old needed an emergency appendectomy. So for the past couple of days I've been the caregiver and now I'm back in bed trying to recover. I share this because I know you all know that post exertional crash we get. Thanks all for your positive comments on this thread. Dizzyde, you must be home now. I look forward to hearing about the rest of your experience. Rich, I think you are right. Dr. Robertson, Dr. Raj and Dr. Biaggioni must all be secretly following yourposts which inspire them! As far as the endothelial studies. I did not receive any results. At this stage in that trial they are simply collecting and aggregating data- too soon for them to share results and interpret. I believe a few things they are looking for there are: - inflammatory markers in the endothelial wall - NO production following stressful stimuli - venous functioning before, during and after cutting off circulation. I did read the thread on BP and salt and think it is interesting. Apparently this thinking has been out there for many years. For me it causes me to question why salt helps instead of hurts since my body apparently produces too much adrenaline. Maybe it is the same way a stimulant works, if the drug produces it, my body gets to create less of it.??? My supine vs upright NE at Cleveland Clinic last year was 158 supine and 680 upright on tilt after 9 mins. In October it was 653 during a supine draw. So, I was surprised it both were in the normal range during my Vandy visit. It could be just the day to day variation in catecholemines but I suspect the more likely reason is the couple of months I've been on high dose antihistamines and low dose aspirin therapy for mast cell disease. NE is a mast cell mediator. Kitt, thanks for sharing the link to that Vanderbilt MCA article. How neat it was to be in a place where the doctors not only understand POtS, but they also have studied MCAD. As a side note, I likely would not have been diagnosed as having MCAD at Vanderbilt because I did not have a flushing episode while there. And although they don't typically do the extensive lab testing that I had done by my hematologist for MCAD, Prostaglabdin D2, the very specific mast cell mediator that was elevated in my blood work confirming my MCAD diagnosis was discovered by Dr. Oates right there at the Clinical Research Center at Vanderbilt. Cool huh? Issie, I agree. For me my most helpful meds thus far have been mast cell blocking meds. I'm hoping to try GastroCrom later this spring.

So hyperadrenergic POTS is just a way to describe the characteristic of having an exaggerated sympathetic response to stimuli. Some have heightened responses and some of us have lower responses. The way most doctors would clinically define that is a Catecholemine response of 600 or more upon standing. In order to get this data you need to have a serum Catecholemine test accompanied by a Postural change. At Cleveland Clinic they did that for me on the tilt. At Vanderbilt they did that during a posture study. Thus, they could compare the Catecholemine difference between supine and fully upright. All that to say unless there is something I don't know about I don't think you can get that info on a urine test. But check w our doc to be sure. As for my suspected cause of POTS? I suspect the autonomic dysfunction is caused by a mutation of my mast cells. (MCAD). But this is just a theory. I really dont know for sure. It is interesting that Dr. Biaggioni does not think my POTS is secondary to MCA but that they coexist and feed each other in a downward spiral. So for now I'm working with the Vanderbilt docs and my POTS doc to trial a few new drugs that might help my Autonomic dysfunction and I'm working w my Mast Cell doc to trial a few new drugs that help block the degranulation of mast cells and their chemical mediators.

The Valsalva is primarily used to help identify if the autonomic reflexes are intact. When there is more severe autonomic failure these reflexes don't respond in normal limits. So the minimum normal change in Valsalva from baseline is 10. If your SBP doesn't increase by 10 it is thought to be evidence of failure of the autonomic reflexes (often seen in PAF, MSA, less often in POTS.). My 75 pt increase is interpreted as an exaggerated sympathetic response to stimuli. However, increased catecholemines (such as NE) are thought to be more helpful in interpreting a hyperadrenergic response. The problem with Catecholemines are that they can vary so much day to day- you have to essentially catch them misbehaving. While at Vanderbilt my catecholemines were fairly low but I have had this tested before both at Cleveland Clinic and at MUSC. In both cases my NE levels were significantly elevated. So I was surprised that they were normal this past week - don't know why but was told that they can vary much from day to day. Nevertheless, I knew before going to Vanderbilt that I have a hyperadrenergic case.

Yes. The main message is "dont give up." So much of this battle is mental and since there is no known cause, no known cure with a very heterogenous presentation our job is to try and live as normal a life as possible. A few things are known to help most: - regular exercise both aerobic and strength building (which I am doing and working on increasing) - salt - caffeine (many POTS pts, not all) - fluids - your own research and your testing (to try to find the best pharmacological and non- pharmacological treatments.) Dr. Biaggioni said, "As a patient you shouldn't have to research, but with POTS you have to research.". Each patient is different. So it helps have to try one treatment for a couple of weeks, then stop that treatment and see how it effects your symptoms. The key is to be patient, do it one at a time and be scientific about it.

TUESDAY I was awakened at 6:30 for another IV insert. Lori, my nurse, got it in on the first try. Normally I'm a really tough stick but in the four times they made it in on the first try 3 of 4 times. Lori told me the nurses on the unit do at least one a day which is why they are so good at it. At 7 they took a final blood sample and then started a 1.5 ltr saline drip to prepare me for going home. Yeah! After breakfast I packed up. By 10:30 my hubby arrived and Bonnie came in. She went over more results and answered several of my questions. Just after 11 Dr. Biaggioni came in and he's reviewed the findings and answered all our questions. He spent almost an hour with us. Here are some key things I learned: - the likely reason I benefit from the saline IV treatments is not fluid, but salt. ie: in the drip I had this Morning I got 9 gms! - the meds I was on before coming are really helpful. There are some additional meds I might try including: Methyldopa and Provigil - my hyperadrenergic response is quite exaggerated. On testing stimuli (Valsalva) increased my SBP to 175 mmHg. This is a huge jump for me when my baseline is about 100. - BBs help my tachy only temporarily but don't appear to help my symptoms - my abdominal binder, SPANX, raises my BP about 20/10. - when standing after 5 mins I consistently have a significant BP drop. Into the 80s /50s - although stress does make me more symptomatic it is not the cause of my crashing - of course there is no cure for POTS. So, my job now is to continue trial and error of treatments and keep a positive attitude, trying to live as normal a life as possible. Thanks to all of you for your positive feedback! Here are answers to some of the questions above: - The abdominal binder used during the study was different, less effective (in improving symptoms and improving hemodynamics) and more uncomfortable than what I regularly wear (Super Duper mid thigh to chest Body shaper by SPANX). This is part of what Dr. Okamoto and I discussed. I think mine has more give but creates a degree of pressure that prevents some splanchnic pooling- this is just my guess. And I think the abdominal binder would just be helpful for those of us with hypotension. I would not recommend for those with hypertension as it increases BP. - Prior to participating in the studies I had to read and sign the patient consent forms for each of the studies. During this time they reviewed all the studies with me. You can choose which studies you want to be involved in. So, for instance, if I wanted to do it all but the abdominal binder I could have. You can say, "no" at any time during the studies. In fact, many times during the experience the nurses reminded me that I could stop or sit down if I felt like I couldn't stand anymore. Or if I wanted to change my mind. I didn't change my mind but I did sit down many times when I felt I could no longer stand. - the Total blood volume testing is done at most of the major autonomic testing centers. (Vandy, Cleveland Clinic- OH, and Mayo- MN, etc). Interestingly a smaller percentage of POTS patients are found to have low total blood volume. - yes! Dr. Robertson is a delight. Dr. Biaggioni, Dr. Raj and the other researchers are equally delightful and generous with their time. I had hoped to meet Dr. Robertson, Dr. Biaggioni or Dr. Raj. Can barely believe I got to meet all 3! Dizzyde- hope you had a good day yesterday. Can't wait to hear about your experience. Today my hubby and I making our way home to FL. So nice to eat salt and drink coffee!

MONDAY Although I slept very poorly with the 24 HR holter monitor on I felt pretty good. They awakened me at 6:15 to take my vitals and give me breakfast. At 9:00 my 2.5 hour med trial began. This time it also involved the use of an abdominal binder which Dr. Luis Okamoto placed. This is the second time he has placed the abdominal binder on me during my stay here. We've had some interesting discussion about the type of binder and proper placement. This is of interest to me because I wear the heavy duty version of Spanx almost daily. (I never leave home without them.). 40mmHg pressure of abdominal binder has been proven effective in improving BP and symptoms in PAF so Dr. Okamoto is testing this same protocol in POTS. After lunch I received some preliminary results from Bonnie, the Clinical Research Coordinator who is absolutely lovely. I learned that my total blood volume was normal - which is a bit of a surprise and my sympathetic reactions are quite exaggerated- further confirmation of my hyperadrenergic state. And after another brief visit with Dr. Robertson I got to meet my DINET friend Dizzyde. What a delight it is to meet face to face. We visited a couple of times sharing our experiences and lessons learned so far on this journey. I feel so blessed to get to meet her in person. (by the way- she PM'd me after I posted a few weeks ago asking advice for my upcoming visit. Surprisingly she was scheduled to come in mid- Jan too. Our visits overlap by 1 day. After a blood draw, saline IV and a consult w Dr. Biaggioni I get to leave. Can't wait for a cup of real coffee.

Good for you for exercising! Getting started and persevering through the difficulties we have is the hardest part. I started an exercise program last March- beginning slow and all recumbent gradually increasing in intensity and uprightness. Like you, I usually feel good when working out. I tend to have better mental processing and less pain during the workout. I do have to watch my tachycardia and use preventive/reactive measures to handle frequent greying out. I decided to bite the bullet and work w an exercise trainer once a week to help. It is typical for me to have my HR jump from 115 to 170 in 30 seconds of strenuous work so my trainer has me continuously increase and then decrease work load. After warm up she'll let me get my HR up high for a couple of mins then she wants it in the lower range for a couple of minutes. When I'm doing something like rowing or recumbent bike I aim between 140-160 bpm. As a note, like Mom to G I cannot tolerate the treadmill, upright bike and have difficulty with most upright machines that move. I think it is the movement of the machine that makes me dizzy. I'm ok on weight machines but use countermanuvers to keep blood pumping. (ie: sit stands, ankle pumping, etc.) Perhaps the most difficult part of exercising for me is what my body does in the following exercise. If I walk for more than 15 mins I typically get faint as soon as I stop. So I constantly do counter maneuvers to avoid the faint and I make sure to slow down a long time before I stop. If I go from a brisk walk to a stand I will likely faint within the first min. This is why my hubby and I avoid walking in the neighborhood during the day - because we always run into people that want to stop and chat. Also, if I sit following a brisk walk within about 15 mins my HR will drop to the 80/50 range and I will get symptomatic. So it's best for me to do chores or some other movement ( not a shower) for the first 15-20 mins after a walk. Following more intense exercise at the gym within minutes of stopping I often feel this rush of draining in my head. And, I struggle with dizziness and fatigue everyday, but following exercise I usually have to allow recovery tfollowing used to crash every time following a workout, especially when I started building up my stamina. It was just part of the price I paid for exercise. Now I don't crash but I make sure to go home and rest for a while, usually in a reclining chair and do reading or quiet activities for a couple of hours before doing anything else. Overall, exercise has been one of the most helpful tools in combatting my POTS. It really hasn't improved any symptoms but it has improved my functioning. I went from homebound, struggling to get out of bed and not able to drive to driving a little and with the help of family and friends being able to run groceries, a little cooking and helping take care of my kids. I don't think it has increased the size of my heart as some have theorized but I believe it has improved my blood flow and strengthened my muscular tone which gives me endurance for the daily POTS battle.