Kellysavedbygrace

I ended up doing a very modified version of Ben Levine's protocol. It has been almost a year. It has been very difficult but ultimately the most important thing I have done to have improvement in my daily functioning. I'll hit my year mark in the middle of March and plan a post about that but basically I've learned: - very slow steady progress is helpful. (this is hard for a former type A personality) - starting recumbent and staying recumbent for a long time is helpful - building to a highly strenuous level is helpful, but learn how to recognize when it is too strenuous - always watch your HR and aim to keep it in range. - starting w cardiac rehab or an experienced exercise trainer is very helpful - know the difference between when it is time to stay home in bed and when to force yourself to go. - keep it up (3x a week min) is really helpful - drink 4-6 oz every 10 mins or so - both aerobic and strength building are important

I am so encouraged to read your post. I'm surprised that you stuck with the program for 4 weeks feeling bad and then started noticing improvement. Good for you!

Ditto!

Ditto. I also request that all records are faxed to me personally in addition to my referring docs. and as mentioned above I ask for copies of everything reported to me in the office before I leave. I have a 3" binder for all my records to date, am about to start the next binder. But this is key to being your own advocate. Also, I will not leave the hospital without seeing lab results myself. (after 2 experiences where abnormal results were not presented to me.). My local hospital won't give them to me, I have to get them signed out through medical records- but you should be allowed to view your results. I'd be firm and confident when asking. If questioned, state that it is your right under HIPAA to access your medical file.

Rama, you've always been a fan of licorice- now look at that. A clinical trial on mice to support it. (not too many studies out there on licorice- how'd you find this one?- impressive!) I can only see the abstract- are these the typical ingredients in licorice? Is that candy or tea? And how much do I need to take to replace my 120mg of Mestinon? Would be an interesting experiment.

Many doctors, especially primary care docs, ER and internists are trained in medical school to recognize a red flag when a woman of childbearing age brings up multiple symptoms in multiple organ systems because it is unlikely that they could actually have all of those problems occur simultaneously. Most likely if there is a heart issue all the symptoms reported clinically should point to a cardiac issue. If it is an ortho issue all the symptoms reported by the patient should support an ortho issue. And thus multiple unexplained symptoms are a clue that anxiety may be playing a role. However, anxiety disorder is a diagnosis of exclusion and should not be given unless the doctor has made many attempts to rule out other conditions through the identification and testing of diagnostic differentials. All that to say, if a doctor is being lazy, not identifying and testing differential diagnoses such as dysautonomia they should quickly be fired.

Typical table salt is processed with iodide- often called, "Iodized Salt.". Other mass produced salts are processed with soda and labeled that they don't have Iodide added. Iodide is a nutrient that is important but for those of us on high salt diets - we don't want to get too much Iodide. That's why I use the more natural version at home and then when Im out I don't mind using the more processed salts. The Himalayan pink salt I use is hand mined, 100% natural and is not processed in mass quantities. It is high in natural mineral content (including Gypsym- so I guess you could say it is "dirty.") but it is food grade and is commonly used by gourmet chefs along with other specialty salts. The following notes just apply to me and my own food/ chemical sensitivities which I suspect I have because of my MCAS and may not apply to you. I try to avoid bouillon powders or cubes as they usually have MSG and I get a reaction from that. (Didn't realize it at first but after several months I've noticed that trend as others on DINET have suggested. Also most preserved food products and especially those with vinegar (olives, pickles, etc.) cause a reaction for me. So I try to stay as fresh and natural as I can but it is hard and some days I'm better at it than others. You are right, salting vegetables and soups is a great way to get more salt in. The salt on melons is amazingly good. Too bad melons aren't in season right now. Makes me hungry thinking about it.

Welcome to the forum. You've found a great place to share and learn from others with multiple symptoms that most doctors cannot explain. So glad to hear you have a friend in medical school who wants to help you. It is unlikely, even if you wore a heart monitor several years ago and you demonstrated POTS on the monitor, that those reading the results would even recognize POTS. And, if you do have POTS it is possible that you have not had it all your life. Many of the symptoms you've mentioned are commonly found in POTS patients (syncope, gastroparesis, reflux, anxiety, etc.) but when you mention reactions to anesthetics and dizziness following giving a hair color it makes me think of my issues with Mast Cell Activation Syndrome (MCAS.). So you might also want to look into that- the key to MCAS is do you have multiple symptoms in most or all organ systems. If so, I'd suggest exploring MCAS. As far as POTS you can easily assess whether it is likely you have POTS by doing your own Orthostatic standing test at home. Lie down flat for 5-10 mins. Take your Heart Rate that is your baseline resting HR. Then stand for a min or two. Take it again. Stay standing a few more minutes. Take it again. (It might be helpful to do this a few times and record your findings.) If you had a 30 point increase or more in beats per minute you should consider going to your doctor with your documentation of the standing test(s) and ask them to help you rule out POTS. It is likely they have never heard of it so print off information from the DINET webpage about POTS and give that to them as a reference. If your doc won't help you rule out POTS fire that doctor and find one that will. Also, anxiety disorder is a common misdiagnosis for POTs patients. Our condition does create abnormal adrenal levels and erratic symptoms bit usually anxiety issues are secondary to POTS.

Does anyone else have to be led out of a crowd? I avoid being in places w lots of people bc it literally makes me crash. I've only been to a few dinner parties since developing Dysautonomia (a close friend's B day, a wedding and a church Valentine dinner- at the request of my hubby.). And to leave each event early and always crash- spending the next couple of days in bed feeling like Ibe been run over by a Mack truck. But, if I am somewhere where a crowd emerges, like at the end of my daughter's school play- lobby full of people- I literally cannot navigate my way through. Someone has to hold my hand and lead me out- during this time I try my best not to look up and it helps if Im wearing earplugs. I also have to ask them not to stop for anything bc I can't stand upright in those situations. I'm ok if I keep moving but am already so faint that I'm sure I'd go down if we had to stop- although that has never happened. If my hubby or one of my close friends is not around I stay put (in my seat) or escape to somewhere quiet until someone comes to get me. As far as driving, I'm very limited. Single lane roads almost exclusively and no night driving. Parking and turning requires a lot more concentration and effort. As a side note- I have no vertigo or agoraphobia but I do have: - severe consistent bilateral tinnitus (ringing of the ears) - can hear 2-4 different pitches at the same time varying w severity of symptoms. - marked abnormal right ear electrocholeography- found on I had a balance test last year. The ENT had no idea what if any role that plays in my case.

I start each day w a glass of Sole water (16oz water and 2Tbls Sole-highly saturized salt water made w the pink hymalyan salt) I highly salt my foods and drinks. I've read up on the pink hymalyan salt and don't buy in to all the claims but choose to use it (buy in bulk via amazon) because it is less processed then most of the others out there. So it is my go to salt but if I'm not at home I'll use whatever salt they have. (I also carry a little pouch of it with me in my purse for emergencies.) I try to limit my intake of vinegar based sodium increase bc I want to limit my tyramine intake. I try to make homemade soups as much as possible bc as stated above you can load w salt. Here are a few favorite healthy snacks: - sliced fresh cucumber chips w salt and dip - cooked (un trimmed) fresh green beans covered w salt. (kids love this)- a great fry substitute - potatoes of any kind loaded w salt- amazing how u can cut down on the butter, cream, etc w more salt - chicken broth (made w natural chicken base found near broths in grocery) - cottage cheese, loaded w salt for a cheese spread on celery - salt added to melons of any kind

not a dumb question at all. I have this same problem when I'm crashing. My hunch is when I'm crashing my sympathetic nervous system takes over, shuts down digestion and thats why I get silent reflux and cant eat or drink much. During these episodes I do try to get in as much salt as I can and try to have a massage or warm shower (while seated) to relax my system. My only consolation is getting a good night of rest- which is difficult to do when the adrenaline is on overdrive. I do get IV fluids which are my go to source when I can't get out of a crash. Almost always helps bail me out. (I get these about 1x a mo)

When at Vanderbilt in January they had me on a sodium and potassium balanced diet that got me to thinking more about potassium. My grandmother always had low potassium so since being back I've tried to add potassium a bit. As far as measuring goes I'm not sure if seurum levels would mean anything. I get between 5-10 gems of salt a day and have for the last 18 MOS yet both my serum and urine sodium levels are normal. How can that be?

This fits with the erratic hemodynamics of MCAS. and somewhat similar to my experience on tilt. (I've had 3 official and lots of stand tests). Each time my diagnosis w slightly different (although in the first case wrong- local doc w little Dysautonomia experience.) 1. 45 bpm HR increase in first 5 mins, then asystole (momentary flatline) accompanied w a large drop in BP (60/40) and blackout --Dx: NCS, told to increase salt take Fludrocortisone and I'd be back to normal next week. (isn't that funny.) 2. 34 bpm HR increase in 9 mins, NE increase to 650, grey out w symptoms and BP drop to 82/55 --Dx: POTS and Vasopressor Syncope 3. 46 bpm HR increase in 8 mins, grey out symptoms and BP drop to 88/55 --Dx: POTS and OH I remember early on Dr. Thompson said to me it doesn't matter whether it is POtS or NMS, it is all Dysautonomia. Now when I hear about your son I realize that our bodies are just not in a state of homeostasis so no wonder our hemodynamics are all over the place.

Cool! Good for you. I'd definitely use a stool or chair and incorporate into presentation. Any other helpful devices you use would be good visuals too! Salt, gatorade, folding stool, etc. Vanderbilt also has a great section for on their website for patient information about various autonomic disorders. Let us kow how it goes! Maybe you can video it and post on You Tube.

Buster, Good for you for being more scared of the lie for your daughter's sake and less scared of the lie for your own sake. I ditto all our friends above and actually have great respect for the stay at home dad I know. His wife works and he stays at home with the kids and is active in his church and community. But you have a condition that makes even working at home or volunteering extremely difficult- with the added bonus that you don't "look sick." And in this case it is hard to be honest. The real issue boils down to being honest with yourself, your family, your friends and even strangers because a lie always leads to trouble. And trouble creates more trouble. And the longer we go telling the lie, the deeper in we get and the harder it is to break free. But in the truth we are free. Here's the truth: you are sick with a disabling condition which affects blood flow to your brain, heart and lungs. You are working diligently to find a treatment that will help you resume work but until then, you are disabled. You hope that this will be a short season in your life and that with the help of medicine and non pharmaceutical treatments you will be able to function better soon- but in the meantime you need their help. You need your daughter's help in being patient w dad as he is learning- kind of like going back to school. And you need the help of family and friends- to drive when you can't, to helps w grocery and meals when you can't, etc. (those are some of my needs- and my situation- yours may be be slightly different but you get the gist.) And another truth: your friends and family really care about you. They want to know the truth, even if it is ugly or hard -they want to help you in your time of need. In fact it is a blessing to others when they can help you. And hopefully this season will pass for you. Allow yourself to be human. And let others in on how you don't have it all figured out. I often laugh and say to my friends, spend a little time w me and I'll make you feel really good about yourself- because when I forget words, or can't stand, or have a hard time doing anything- we are all reminded that we live in these human bodies that are imperfect. And my body doesn't do what it is supposed to- which makes the other person feel better about themselves. Buster, I'll be praying for you. It is hard to share the truth. God bless.

Rama, what do you know about salt and it's role, if any in brain functioning? And why are you specifically thinking about the pia matter? Are you speculating that the sodium plays a role in creating inflammation somewhat like a case of meningitis?

You are sweet. It is actually a blessing to have these kids surrounding me and I trust God has a plan for them in the midst of this crazy circumstance. They have developed independence in many ways and I am blessed to always be home now when they get home from school. (before I was too busy in so many ways and not always available for them- but now Im always home.) Yesterday when I was crashing I had 3 back rubs from 3 different family members. Can u believe? On the flip side they are probably the only kids in town who can properly pronounce Neurocardiogenic Syncope and Postural Orthostatic Tachycardia syndrome- that can't be too normal. The SFN is typically tested w a QSART (although could be further confirmed w a skin biopsy) and incidentally only about 30% of Dysautonomia pts actually have SFN. The IVIG was offered to me locally by a neurologist who was shooting in the dark before I had a full autonomic workup. He was speculating that I had some autoimmune involvement and had heard this sometimes was a helpful treatment. Glad I turned him down.

I'm with Lyn on this one. If it were me I'd go ahead and get a consult w a mast cell specialist.

Hi Kit, As Arizona girl said I highly recommend going to Vanderbilt as a research patient. I was able to meet and consult with Dr. Biaggioni, Dr. Robertson and Dr. Raj. I participated in six different trials but not the salt trial. Some of the ones I did included the phenotype study, the endothelial study, the treatment trial (including propranolol and abdominal binder) and a few others I can't remember off the top of my head. I have since been invited back to participate in their salt study. The wonderful thing about being there is that everyone on the floor is highly trained in autonomic dysfunction- what a blessingit is to have nurses who know what to expect with me. And after more than a week of testing and observation you get one of the main attending docs who reviews all the available test results and gives you a summary of their feedback. I had a long list of questions and Dr. Biaggioni stayed and answered everyone of them and told me if I had any other questions come up after the visit to contact him. At the end he suggested a couple of new meds to try and helped me understand a few things from his perspective about PoTS. I would not suggest going there for a short clinic visit unless you had a specific test or set of tests you knew you wanted to have done and an opportunity to see a doc who had a special insight in your case. That said, I would highly recommend any of these 3 docs for a consult but keeping mind they are great in the area of diagnostics. For treatment I'd suggest staying w Dr. Grubb or going to see Dr. Randy Thompson in Pensacola. Both of these docs specialize in following POtS patients on a regular basis unlike those in the major medical centers. So for me, I took my recommendations from Dr. Biaggioni to Dr. Thompson, who knew my case well, and got his feedback on the recommendations. For me this is the best of both worlds. As far as the SFN testing they can do that at Vanderbilt. And n your case have they ruled out PAF? The IVIG can be ordered by most any doc. It was offered to me once at our local hospital by a neurologist but I didn't go that route. I'm not sure about the specifics of the salt testing they do at Vanderbilt but I believe they are looking for patients who demonstrate some lower blood volumes. Mine was only modestly low so I was surprised I was invited to participate in it. I'm not planning to go back at this time because it is such a long trip and difficult for me to get away w 4 kids. Please feel free to PM me if you have more specific questions. God bless.

Call MUSC (843)876-2700. Ask to speak w Susan Dunbar, Dr. Afrin's assistant. I think this number is the main appt line but they can get you connected. He will want you or your doc to fax medical records of your case before he takes an appt. This could take a while but well worth the wait.

This reminds me of a discussion I had with Dr. Afrin about MCAS and Dysautonomia. And although he suspects a connection between the two conditions he is very quick to say it is simply a guess, not fact. He the proceeded to explain there is need for further research and then he shared: "Neil Degrasse Tyson has a great quote in this vein: "The good thing about science is that it's true whether or not you believe in it." In other words, quality research will reveal the truth regardless of what I or any other physician "believe" based on our individual sets of experiences."

I agree with Lyn. Sounds suspicious of mast cell to me. Many docs are not well educated on Mast Cell disease. Here is a link to a great article about this. You can take to your doctors and if they have questions a good doc for the to contact (or you to contact is Dr. Afrin at MUSC- one of the authors. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069946/ Glad you have an epipen.

In December 2011 I met another POtS patient who used a service dog. I met her in the waiting room at Dr. Thompson's office in Pensacola, FL. In that case she had atypical seizures and the dog would alert her before a seizure or faint so she could protect herself from getting hurt during the fall. She said the dog was an enormous help. I'm sure the dog helped in many ways beyond what I recall.

Yes. Discuss w your primary care doc and explain it is helpful for fluid loading before a long flight. Most hospitals have an IV therapy unit that if planned in advance will be able to give fluids. Some have made arrangements w home health or other labs. May require some investigating but well worth it to find a way to get fluids easily in future if needed.

Yes! Go! Europe? Are you kidding? Here are things I do when I have to fly: - make sure to get a bulkhead seat where so I can move around, stand up and prop legs up - get 2 ltrs of saline IV within 12 hrs of flight - take full dose of Xanax - alert head stewardess of condition when boarding plane. (be careful not to alarm but to educate saying I have a non-life threatening fainting condition that likely won't be a problem but want to make them aware before take off in case I faint.) - if possible get a wheelchair through security and boarding both before and after flight - so I don't have to stand in lines - set alarm clock for every hour in flight and get up and walk the aisles - plan at least one full day of rest in hotel after I arrive before any activities - Identify hospital near where I am staying and arrange IV services in advance so I don't have to go through ER I fly to Idaho from Florida, not overseas- but a really long journey nonetheless. This plan has worked well for me. You know yourself best and I'd just say do whTever you can to plan in advance for a successful flight.