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Kris, Thanks for sharing about Humira. Am so glad it's helping. You've come a long way. Didn't Mayo tell you that you were in a hyperadrenergic state but said you didn't have pots? I remember that. The inflammation makes a LOT of sense. Is it a rheumatologist that is prescribing Humira? It sounds like that's the area you fall in? Have you researched foods that cause inflammation? It's helpful. I did get a LOT of information from Mayo MN. They insisted I get the sleep issue resolved before starting new meds, so that's next. Prior to Mayo my cardiologist here is very knowledgeable about dysautonomia, and I feel I've tried everything under the sun...Probably a dozen different meds. All made things worse. They either caused too much fatigue (like Clonodine) or a massive drop in BP like beta blockers, or neuro issues (Mestinon) and on and on. Dr. Sandroni at Mayo talked about a few meds I'd never heard of so am hoping she'll have some good ideas. She 'gets' the weight gain concern and completely understands that thats an issue that most of us don't want to deal with. I'm petite, small- boned and can't carry extra weight like some women. So am hoping she'll have a plan. I've had good luck with Gabapentin also known as Neurontin. Psalms had suggested it as it helped her with several issues and my cardiologist agreed. It helps with pain, sleep, and even headaches. Am grateful for it, but it doesn't do anything for pulse or BP. My pulse goes up to 135 in my first ten minutes of standing and then starts to drop quickly dues to having neurocardiogenic syncope, and it will quickly drop to 50. At that point I'm dizzy for hours and have to sit. Crazy. Mayo recommended a pacemaker but studies show that they don't always work because of blood pooling in the legs. Because I don't faint that often I'm holding off on the pacemaker for now. Otherwise I've been off all pots meds since December. When you go to Mayo, you need to be off all meds for testing, (I know you know that, but for people who might read this it's an fyi) Btw, what kind of horse do you ride and what kind of show is it? I love gaited horses Have you ever been to a Paso Fino show? It's pretty amazing...The costumes and the way pasos move. I just don't have the strength to post anymore so pasos are perfect for me. Also, they're small horses which I love and very sure footed. You're very fortunate to be able to work and ride. I know of two other horse lovers on Dinet, and I'm rooting for you! It's a blessing to be able to follow your passion. Blessed be you! As for the magnesium intramuscular shots, I'm not sure what doctor would prescribe. An internist, a naturopathic doctor for sure....Really anyone can prescribe if they're willing. They just need to look up the dose. It's a big needle, and I usually injected into my thigh. Leaves a bruise, but it was so worth it. Gave me a lot of energy. I need to get someone to prescribe again. I also did Vit- B12 shots which is a piece of cake...little insulin needle, and I also gave myself shots of Kutapressin. All three together worked synergistically. I think a naturopathic doctor would be the best bet for the mag and B-12 prescriptions. Not sure Kutapressin would apply to you. You can inject the B-12 every few days. It does boost energy! Inject in your belly. It's NO biggy. Easy. Intramuscular shots takes getting used to. Very big needle, but it's worth it. Start on an oral mag for now at least and get the one with calcium in it. Be careful to buy at a good health store or Whole Foods, and not at Costco or a drug store. You want ot be sure the minerals are sourced from the U.S. Happy Trails! K

Bellgirl, I just wanted to share that the neurologist I saw at Mayo is a prominent POTS researcher and she does NOT recommend Provigil or Adderall for pots patients. She explained that it acts like a 'choke' on an engine. I also had to stop Clonodine because it caused too much fatigue, and I can take no beta blockers because they cause my BP to drop too low...80/40 and 70/50 etc... Have an appt to speak to my Mayo neurologist and one of my questions is about meds. When I was there for ten days of testing six months ago she did not want to prescribe any meds until I got my sleep issues under control. I saw a sleep expert and I didn't need a sleep study, he could see my circadian rhythms had flatlined and he gave very specific instructions on how to get the circadian rhythm back to normal. An amazing process, and it worked so am now ready to start meds again. Degenisis, you may have excellent results with beta blockers, or Mestinon, (if you're not hyperadrenergic) or Midodrine. Good luck with this. Sometimes it's just a matter of trial and error. K

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Perhaps it might help to seek out a group of other people with limitations, a support group of some kind but not necessarily a dysautonomia support group...Imagine that would be very hard to find except online. Many people have limitations of various sorts and you might enjoy other people in similar situations. It may also be useful to find friends in a similar situation because I know of people in the states who have found themselves in a similar situation (living with family) and they have been able to band together and rent low income housing, an apartment or a house. The ones that hear well answer the phone, the ones that walk well answer the door, the ones that enjoy cooking do the cooking and so on. You may be able to find someone who simply needs someone to live with them at no cost and serve as a companion. Perhaps an older person who would enjoy having a young person around! I understand your desire and need for autonomy and I think that's an important goal...To seek a way to move out of your parents home and that alone may give you a great feeling of accomplishment. I can't begin to predict what the future holds for any of us, but I do know that coping well beats hoping. Good luck with this, and I'm hoping you can make some strides in meeting your goals in your current condition. Wishing you the best! K

Have you considered going to Mayo in MN for this? They are the only place in the world that use Thermoregulatory Sweat testing developed there by Dr. Low. Neuropathy in the face is not common in dysautonomia, but it is common in other forms of autonomic disease. You might want to read about it by using Google. Good luck with this! Best, K

Hi Andy, I'm reading your story and hoping you can find your way onward and upward.. Physical therapy if you have good insurance is an excellent option, and if not would you consider buying a recumbent bike?...Very inexpensive on Craigs List. You can give yourself reasonable goals for exercise. X number of minutes X times a day on the bike, and increasing duration each week...Maybe a journal of your exercise and weekly goals. Short walks, and at the very least and when you feel your worst, (suggested to me by an exercise physiatrist at Mayo MN)...Get up and change posture in your home often. This was suggested to me instead of an exercise program at the time because my heart stopped beating for 7.5 seconds on a TTT, (So Mayo did not recommend exercise at that time.) But the doctor suggested changing posture often and walking around inside our home for a few minutes. Since then I've progressed to my light workout with a trainer once a week and while at Golds Gym I spend 10 to 20 minutes on a recumbent bike. I also get on the treadmill and use it to stretch. Hard to explain but a treadmill can go very slow and by allowing one foot to stay in place, it's a good stretch. You can't control disease or syndromes of illnesses that affect you, but you can control how you choose to respond/react. Being proactive is a healthy response. I wish you well on this and with the encouragement of a supportive girlfriend I'm betting you can make a significant improvement. Sometimes it's hard to start something new but if you choose to I hope you'll see good progress quickly. Best, K

Blue, One of the things I found most interesting about this dog and the Vimeo is that the owner has an exceptionally calm and gentle nature while the dog has a very big personality. It makes me feel or realize that the world works in interesting ways and that often or hopefully miracles do happen. In this case it did and her calm gentle soul came to find this amazingly energetic dog. I've found this to be true too often to be a coincidence with animals. There seems to be a match for every kind of dog. The ones that seem impossible to adopt and find a forever home for when I was a foster parent was frustrating... I'd think 'Oh, this is never going to happen.' Days after weekends and month after month waiting in a adoption facility I'd feel it would never come to be and pack the dog up to go home for another week and then and often at the very end of the day the precise right 'mom' would come in and speak to me. Somehow it was usually the 'mom' alone that would come to look and see before bringing the family...Ironically, I'd always know when she she spoke to me. So odd how it worked out. Each and every time and dog after dog. Usually it was the dogs with emotional issues who were harder to adopt than the ones with physical problems. But I loved this girls calm energy for this dog and I see why they're the perfect match. He may have four prosthetic legs but he has a very healthy disposition. A beautiful story. Agree, rescued dogs know they're rescued, and they never forget 'who' rescued them. They tend to favor the precise family member who did and they are very grateful! Best, K

Oh, and here's his mom. He's cute and happy! http://designtaxi.com/news/357343/World-s-First-Bionic-Dog-With-Four-Prosthetic-Legs/

This guy amazes me and lifts my spirit. Found freezing and near death. See him now. http://news.discovery.com/tech/robotics/first-bionic-dog-has-four-prosthetic-limbs-130501.htm

Dr Chemali should be able to help you sort this out without a problem. One of the problems for patients wit NCS is that studies have shown that pacemakers don't always work and some patients continue to pass out. You can Google NCS and pacemaker studies or ask Dr. C about it. All dysautonomia doctors are very familiar with these studies. My sense on the reason for this is that pacemakers can't stop blood from pooling so the problem persists. Generally though dysautonomia experts recommend a pacemaker with a situation such as you describe. It was recommended to me at Mayo MN recently when my heart rate went to 30 at 13 minutes on a cardio TTT and my heart stopped beating for 7.5 seconds. Obviously I passed out.... My cardiologist here at home is very familiar with these studies and he's also a surgeon who puts pacemakers in people. In my case we decided together to 'wait and see'... In your case though it seems you're passing out on a regular basis and it's keeping you from driving? Generally driving is one of the biggest issues. If you pass out when driving due to bradycardia a pacemaker is pretty much the only option. It may be a god send for you. Am wishing you the best and glad you have good doctors to help with this. Keep us posted. Best, K

Have you been tested for NCS? (Neurocardiogenic Syncope)? Your bradycardia suggests that to me. It is sometimes seen in patients with pots. NCS is another form of dysautonomia. You would need to see a cardiologist or neurologist who understands dysautonomia and can do a cardio TTT, (not a pots TTT). Good luck with this. You might benefit from a pacemaker if you have NCS. It would keep your heart rate from dropping to 30 and keep you from passing out. This is not medical advice, but simply a suggestion that you have your doctor look into this. I have both pots and NCS, so I can't help but suggest you speak to your autonomic doctor about this. Best, K

Yes, I have this, and mentioned the most profound aspect of it to a very renowned autonomic researcher a few months ago. She shrugged it off. These incidents mean nothing to neurologists unless they have a distinct pattern that progress with a downward spiral. So good luck with this. Actually, I'm less bothered by mine with her lack of concern. K

Mayo MN does the Qsart test but they also do a Thermoregulatory Sweat test...Only done at the Mayo in MN. This is a very difficult test. The entire front of your body is covered with a powder and then you're but in a very hot clear 'box' and they crank the temp up to about 110 degrees. The powder is also on your face and just about every inch of the front of your body with small drapes discreetly placed. It's a wicked test. On the areas where you don't have SFN the powder turns purple like Barney the dinosaur. They can unzip windows to add powder. I could see at the end that my feet were still yellow which is a sign of SFN. (Meaning my feet didn't sweat enough to cause the powder to change color.) Generally SFN starts in the feet (longer nerves) and moves from there. In Parkinson's and other autonomic illnesses it has a very different pattern. I had complained of numbness in my feet which progressed to pain. This test is illustrated on the internet. It's wicked to get off. They have you shower there and it looked like I had killed a deer in that shower. Crazy. They take photos of you throughout the test and one of the autonomic doctors interprets the photos. Mayo puts a tremendous amount of effort into this test and take it very seriously. Best, K

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A defibrillator is a different issue. If you can, think to ask for your doctors notes from your meeting. It helps me to read what the doctor writes in his/her report. I was told a few months ago at Mayo in MN by a cardiologist there that I should get a pacemaker for NCS, but it WOULD NOT help with tachycardia. I take her word on this. Ironically my cardiologist here is a surgeon and puts pacemakers in, so I'm in good hands. I know of no current research that suggests a pacemaker for pots. Years ago they put them in pots patients but no longer. Hope you get help with your fainting issues. That's the important thing. Best, K

A pacemaker can't help tachycardia. It paces the heart rate when it goes too low. (Bradycardia) Why is he recommending a pacemaker?

Also, the woman who goes to school with your son who has a dog that barks to alert her? She could also have another form of dysautonomia along with pots. I have pots but I also have NCS, (neurocardiogenic syncope). This is a big issue and while many with NCS get pacemakers, studies show the pacemakers do not always work for NCS. My heart went from 90 to 80 to 70 and then immediately to 30 on a cardio TTT at Mayo MN. My heart stopped for 7.5 seconds. In this case a dog that 'barks' is not inappropriate. If she's wearing an alert bracelet and the dog BARKS it could save her life. Normally a dog that barks to alert someone is not common, but there may be a good reason she has a dog that barks. I wouldn't want to judge her or her dogs training without knowing more. I give your son high marks on being thoughtful and not asking her too many questions. He sounds like a nice person! Best, K

An interesting topic. Also, be aware that some people with service dogs do not have dogs that perform specific tasks. Many people with mental issues or psychiatric issues have a 'service' dog. The dog is simply a companion that calms them or whatever. A psychiatric M.D. must 'prescribe'. These are usually small dogs that are allowed to travel anywhere with that individual. Yes, most people with service dogs have dogs that are highly trained or at least trained. But with a letter such as I stated above people do get dogs that are simply companion animals. I've worked with shelters training dogs and have fostered dogs that would otherwise not be adoptable for decades. My last such foster was 2 years ago, because am not able to do the amount of walking needed to work with a rescue right now. Am all for dogs and hope anyone who chooses has an opportunity to have one, be it for pleasure or a working dog. Best, K

It is an amazing documentary. Joe now does one week juicing 'bootcamps' that look pretty cool. Juicing has literally saved lives, which the documentary shows. Found this to be especially interesting on the subject of juicing! Watch it before you 'think' you know. People are juicing canibis leaves and buds. It seems cannibus is only psychotropic only when it's heated, but the amount of medical benefits from 'raw' unheated cannibis is compelling. Google 'juicing pots' to see more. I was originally trying to research juicing and the kind of pots we have, but what I found does perhaps pertain to us. If I lived in a state where medical m. were available I'd definitely try this.

KJay, I don't worry about iodine much because I don't have a thyroid gland. (I developed Hashimoto's Disease in my twenties. An autoimmune thyroid disease). But iodine is important for thyroid health. (That's why iodine is added to table salt.) I take organic sea salt and put it in gel capsules, and use that for pots.

Joe is the Aussie who made the documentary 'Fat Sick and Nearly Dead' https://www.youtube.com/user/FatSickandNearlyDead

Another interesting fact about ginger, thanks KJay, American diets are high in calories and low in nutrients. While fiber is important, juicing is not about getting fiber. If you're really interested in learning about juicing, watch the documentary called, "Fat Sick and Nearly Dead" Think it's still available via Instant streaming on Netflix. There's no better way to deliver nutrients to the body than juicing. You'd have to eat pounds and pounds of kale, beets and veggies to get the nutrients that can be juiced and consumed easily. Doing it yourself is optimal but it's a big mess as anyone who's tried it can attest to. Good luck with this, it's an amazing option in many cities that offer freshly juiced veggies. K

We have a VitaMix and it works well for making veggie 'Smoothies'. That's what the bullet does for a lot less money...Makes smoothies and other 'stuff'. Juicing is very different. This is difficult to explain, but most of what's in those great smoothies with kale, spinach, berries etc...is FiBER. With juicing you only get the 'good stuff, no fiber to fill up on....Veggies and fruit are literally 'juiced' and only the pulp remains and tossed in the garbage. People are using juicing to loose weight with juicing cleanses and also for health reasons. (People loose a TON of weight drinking nothing but 'real' fresh JUICED veggies and some fruit.) Not my purpose, but... A new shop near us opened recently selling 32 ounces of freshly 'juiced' juice at 20.00 for a 32 oz jar. (That's almost 4 8 oz servings) Made fresh daily with a variety of veggies and a little fruit, or no fruit. "Custom" juice is the same price if you buy 2 20.00 jars. My husband and I both make a trip there every Sat and buy 2 jars each. It's pricey at 20.00 per jar but so worth it. If you have a HIGH IGE, be careful of juicing fresh ginger. I ended up in the ER, and found an article about high IGE and fresh ginger allergies. Who knew? Good luck with juicing, (I think it's VERY worth it!) K

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