Maiysa

Is it okay to suggest a test? I know sometimes I say this. But thanks for the reminder.

HI Issie.

Anoj, thanks for the compassion. I'm such a baby-but I didn't mean to complain. But, yes, I have the same issue. Anything that stimulates makes me so dizzy. And I think the thyroid is causing too much stimulation, so I agree, I wonder if another thyroid pill would just do the same thing to me. I was told by the neurologist and endo that they want me to get back to a normal thyroid level because it is a catalyst to dysautonomia.....it being hyper thyroid. But I only have 2 and half years to get past the cancer free and can relax a bit on the dose. I'm getting closer. Yay!

Thank you Chaos. I don't really know what systemic means, except that it might be affecting other organs. I'm hoping it's the mild form of systemic. I hope it's not worse than I'm thinking. But thanks for the support. He thinks it might be what is flaring up the autonomic neuropathy. So to get it under control would be so helpful.

Rubytuesday, I'm so sorry, but I don't know much about the disorder and I don't have the sinus issue. I was told that mine has nothing to do with allergies, so I unfortunately didn't understand the allergy connection. Is there supposed to be one? Now, Sjogren's, I know there is a simple test they can do from your mouth. Have you had that done yet? That would confirm or eliminate it. I hope you can get some answers soon!

Jrlehnardt, the name of the forum for mast cell is.....

mastcelldisorders.wallack.us

They were also very helpful in trying to help people get diagnosed. Have you had a tryptase test yet? It seems to be what helped me to get diagnosed. Let me know if you have any other questions.

Maiysa

Thank you Corina!

I had thyroid issues, toxic-cancer and they think it was a possibly autoimmune hashimotos before they took it out. I take levothryoxine every day because I no longer have a thyroid. I miss it. haha. Anyhow, the medication makes me not feel so well. I was just diagnosed Friday with Mast Cell Activation so now they want me to try a different thyroid medication because it makes me feel sick in the morning. They want to do the armour. I'm concerned about it too because I have heard and read that it is not as reliable as well. I have to be kept hyperthyroid to keep the thyroid from growing back, which hence keeps the cancer from growing back. So I'm on the fence about the natural stuff since I need to have consistent numbers and a reliable medication.

I actually looked into doing this. It looks like it's a good thing. But when I saw that people with seizures should not do it, I was out. I don't have seizures, but my blood pressure drops too low and then it can happen. But I wish I could, it looks very promising!!!!

Feel better soon Rich!!!! Keep us updated!!

Jeff, first of all my heart goes out to you and your family and am very sorry. Such a terrible loss. It was a sad day. Also, thank you for your words on God, I believe. Thanks for the reminder. What I wanted to talk about was, I saw this video a few years ago at the time I was very ill with a fungal infection. We found statchybotrys in our home and we also live in a fungal infection area which was the catalyst to the dysautonomia which I was not aware that I had at the time. I also had pneumonia from the fungal infection off and on for two years and it took the doctors that long to diagnose the infection which caused the dysautonomia to flare to an incredible degree. Anyhow, I just wanted to ask, and I remember hearing something on the news about that she had taken cold medication. It's been awhile and I have trouble remembering things. But my point is, I have dysautonomia along with orthostatic intolerance and on occasion a type of dysreflexia episode, although I do NOT have a spinal cord injury, so it's pretty rare. Before this I was a very very healthy girl, very athletic and active. But what I wanted to tell you was that one night, during my penuemonia phase, I took some cold medicine. I have a terrible intolerance to medication, so I was careful to not take too much. So I only took 1/4 of a teaspoon. And it was lights out. This has happened before while in the hospital and I was told I was very close to death and it was a very touchy and scary situation. Anyhow I knew this was the same situation from before as I went in and out of consciousness. The ambulance came and I was told that cold medicine is the worst thing I could have taken for the condition I have. My blood pressure dropped very low and my heart was all over the place. And it makes me wonder what happens to people who are not aware they have this and take a full dose. It's a scary thought. Anyhow, now if I take any type of medication or antibiotics this life threatening situation happens. I believe, and so does Mayo Clinic, that the infection changed my immune system and caused what I have had my whole life, dysautonomia, to come to the surface. I was told I am susceptible to sudden death. I don't want to scare anyone on here, but I feel people need to be so careful with just simple over the counter medications with this disorder. I understand in your sisters case it says pneumonia which was the cause of death, which I also had pneumonia at the time of these severe episodes. But for me, I felt it was the medication mixed with the new immune system from the infection that caused me to get that close to my own end. These episodes happened several times after pneumonia and it was 80% of the time due to medication. Was curious if this was similar to what happened to Brittany? I'm not so afraid of these episodes anymore, as I realized if I am close to ice cold water it causes this situation to stop and have learned that hot showers actually can trigger them as well. I was told the cold water causes the blood vessels to constrict, hence bringing back my blood pressure and putting oxygen back into my little brain. Thank you for bringing awareness to the cause. Also, so I don't scare anyone on here, I don't have POTS. I used to in the beginning, but it went away after a year or so and now I have a different form of dysautonomia. I want to make that clear because I don't want anyone to panic. All of this is so scary anyhow, don't need anything new to worry anymore than they need to.

Thanks for listening and a healthy day to you all!

I had it done. And it was just annoying little pinches. Not anything too bad. I did say a swear word, but the uncomfortableness only lasted a second. Really no big deal. But good luck to you.

gofl 1-I truly don't know much about mast cell, only from what other's have told me about and I just got diagnosed yesterday. I do have autonomic neuropathy and orthostatic intolerance so not sure what the difference is in symptoms since they mimic each other a lot. But found out that mast cell can actually trigger my symptoms. But I was having a lot of flushing, and terrible episodes that made me nauseated with blotchy skin and bathroom issues. My blood pressure would stay very high with a racing heart and a fever on occasion. And more than anything I have a constant migraine and lots of strange headaches and body aches.

Sure Rama,

I have non-spinal cord injury dysreflexia, so mine isn't exactly the same. The neurologist calls it autonomic dysreflexia. It took years to diagnose. But anything can make it occur, usually a fever, a migraine, female time of the month, car sickness is one of my biggest triggers or medicine or something as simple as using the restroom. I start to feel the most intense heat all over and I can look like I just stepped out of the shower in a matter of ten seconds due to sweating PROFUSELY. Then I don't know where I am, I can't move my upper limbs, talk or do anything. I'm basically a wet noodle and I turn grey blue, and I start vomiting and have a bathroom issue immediately and sometimes when my blood pressure goes into the 30's I will have a seizure. I guess my brain is getting the wrong signal and my blood pressure shoots extremely high so my body over reacts causing my blood pressure to drop too low. All I know is that it's scary!! My family puts me in a tub of cold water and it usually stops it. I guess it constricts the blood vessels raising my blood pressure back up. I'm sure some people on here have this and don't even know it. It took almost 25 years of these to figure out what they were. It happened in the hospital and I was going in and out of consciousness and they were calling code blue and I was surrounded by a lot of people and it was chaos. It's the yuckiest thing ever. The next day they told me I was very close to death, but the next day I'm usually good as new. Bizarre situation. Now, I have to go watch a happy movie. haha.

Thank you ladies. Sue that made me laugh....I know what you meant. haha

I have autonomic neuropathy and orthostatic intolerance and an occasional non spinal dysreflexia episode. The last time the paramedics were here, they said, Ma'me, how much have you been drinking? Well, whenever my doc from mayo calls that's his first question, how much have you been drinking.....he means water. So in my delirious episode I said....A lot! And then they asked to see all of my prescriptions, which I don't have any because I can't take any. My husband tried to explain to them that I have dysautonomia. They were looking around the bathroom and looking at my husband suspiciously and then one paramedic yelled out, hey, this is a typical reaction to her disorder. Then they all started taking me seriously and taking blood pressure. So ridiculous. I want to wear a t-shirt that says, I wish I was drunk!

I finally got into see a hematologist and he diagnosed me with mast cell activation and says it is systemic, but thankfully NOT the leukemia type. I would never have never checked into this had it not been for everyone on here encouraging me to see a specialist. I was not aware of this disorder. So thank you all very much. What a life saver!!!! The mast cell forum was also able to find me a doctor in my area. So I'm so grateful for their blog as well. As a matter of fact this blog has had two compliments. My neuro told me that she sometimes visits these blogs and always finds good information. So that's a pat on the back for you all and the moderators! Also, I went to the allergist in November, which I was encouraged by some of the people on this site to ask for a tryptase test. Thankfully I finally got one after much drama, and my tryptase was elevated at 11 on a normal scale of 1-10, but the allergist told me not to worry about it, it meant nothing. But when I mentioned it on this blog many of you told me that this didn't sound like a correct response. I was too tired to deal with it but got a few serious messages from others on here and the mast cell blog to find another doctor. I got very lucky and found one locally. That was a miracle. He is a hematologist and very compassionate. He knew I had it right away from the tryptase and symptoms and took 11 tubes of blood. (I'm so tired) But he said we will know more in two weeks and asked how I felt about a bone marrow. So will see in 2 weeks whether or not that is necessary. I hope not!

The hematologist asked why I got a tryptase test in the first place and I told him about this blog and how I was encouraged to get one. He asked what the allergist said about the elevated tryptase. I told him that he said it was nothing to worry about. I told him that people on the dysautonomia and mast cell blog said that it wasn't right and to find another doctor. He shook his head and said, well your doctor was off the mark, you do have mast cell. It's so sad that people on this blog know more about this condition than a doctor.

So thanks to everyone for your help. This hematologist says that he thinks the mast cell is the catalyst to the valley fever, the thyroid cancer and toxic thyroid, and autonomic neuropathy and orthostatic intolerance. But wants to do some more tests to see where we are at with the mast cell before he says too much. IT's probably systemic, but not the leukemia type. So that's a huge blessing. So grateful. He also said he might be able to medicate me to make me feel a bit better and have a better quality of life. I told him the last doctor told me this, and by the second appointment of finding nothing he was done with me. This doctor said, well, I'm your guy, so hang in there and I will figure this out and he gave me a low high five. Haha- Sweet guy. Thank God!!

Thank you all for listening!

Good health to all

Maiysa

Wow, Ruby Tuesday, that's a lot. But it sounds familiar to me. I'm going PM you to ask a few questions if you don't mind. Thanks for sharing your story.

Shoegal, sorry to hear. Everyone once in a while I use the smooth move tea. But start out with a few tablespoons to see what you can handle. It really helps when I have gastroparesis and I also blend papaya seeds and some greens and that helps to get things moving. Feel better soon. Hang in there!

Rich, my husband likes the vitamix better than the Omega juicer. I like the juicer. I like the taste better. But I wanted to tell you that we ordered our Vitamix on line used and it came with the same warranty as new. It works great! But I know they are still expensive. We had to forgo all the extra canters and a few more items, but it works the same. Vitamix also refurbishes them before they sell them. I tried wheatgrass and it upset my stomach. Not sure why. Sometimes I have a lot of allergies too, but there are so many great things about wheatgrass. At Wholefoods they sell the shots frozen and you can take them home to put in the freezer. Awesome idea. But wow, they are expensive. I wish I would have thought about it.

If you are into juicing, you should get the book by Kris Carr, She wrote Crazy Sexy Diet. It's a beautiful book with lots of photos and great tips. It's not a diet but just a way of life for her. She is Vegeterian, which is not for me, but there is a plethora of health information in this book that has really got me on the right track. She did the documentary Crazy Sexy Cancer, it's a funny title but she healed herself through juicing. Anyhow, she also has a blog called Crazy Sexy Life and they have so many people on there that talk about juicing all day long. And they have every tip you would ever need. Anyhow, get the book if you can, it's a great reference guide for me. I promise you don't have to be a girl to read it. I think the title scared my son when I showed it to him and he ended up really liking the book.

I agree with Rich. We have the Omega and from what we researched it's considered a masticating juicer-meaning it breaks it down slow so as to keep the nutrients. We ordered it on line and it was about a third of the price that we found at stores and other places on line. YOu have to really search for the deals. It is a pain to clean, but I'm so used to it, most of the items can be put in the dishwasher. WE also got a vitamix, so EASY to clean also. I do both.

Also, Tenille, I tried just a juicing without anything in my stomach and I got very dizzy. I felt drunk. If only! So now I have to juice after I have had a little protein in the morning. I must have hypoglycemia or something. So go easy into it.

Hi Ramakentesh,

I have also heard good things about Alpha Lipoic Acid. I read in the Mayo Clinic study that these good results are usually in about 300-600 mg of ALA daily. It's been a while, but I thought that was the magic number. I react to everything, so I bought the powdered ALA capsules and I put just a dash a day in my juice and have worked up to about 100 mg.'s a day. It's a peppery taste that's for sure. Yucky, but I'm used to it now and can take it in capsule form. I take it after my blood sugar is stable, usually in the afternoon because I had read that it can mess with hypoglycemia, but I think that is only if it is taken in large doses. But I don't know what large doses means, so I play it safe. Also I have noticed that the numbness in my extremities has gotten better and I'm only taking 100 mgs, but I have been taking it for several months. Not sure if it's a coincidence, but the numbness is definitely not as bad as it used to be. I read that people with neuropathy started seeing results in just a few weeks, so maybe me taking it for a long time in small doses, it can be possible to have a positive result. I hope it can just get better for all of us.

HI Dani. Sorry to hear about your brother's issue. My son has Chron's, which is in the same category as ulcerative colitis and his doctor says it is an autoimmune disease-or at least Crohn's is. When we call in for my sons medication it is also listed in the autoimmune disease category. I have read that people with Crohn's can develop dysautonomia-I pray for my son's sake, this is not the case. I'm only assuming that ulcerative colitis would be in this category as well. If I come across anything in my books I will let you know. I am always trying to read up on the latest as far as inflammatory bowel disease and it's hard to find a book on just Crohn's as it is always lumped together with ulcerative colitis. Have a good night!

Hi Shoegal,

I don't know what a lot of your symptoms are, but I was told for years I had IBS, which ended up being gastro paresis. I think they found it on a small bowel follow through. Also, I went to a neurologist who I explained my symptoms to, and I had been to so many doctors since I was in my 20's and was 46 at the time, and most doctors just stared at me as if I was a freak, and she knew what it was right away. She said you have dysautonomia, possibly autonomic neuropathy and then we spent months trying to find a doctor who could deal with dysautonomia since she was so honest and said, I don't know much about it. I appreciated that. She was very helpful. I went to Mayo and they had a QSart machine and that's what really helped them to find out what was partially wrong with me. I saw that you did the endocrine testing, I was sent in for that a few times and although all of my levels were not normal nothing added up.

I hope you have the options of going to other doctors. I at the time had been on HMO insurance and it was impossible to get doctors to get me referrals. I really had to fight for any doctor I got to see and then the doctors they were sending me to were clueless, which my doctor at mayo said that is normal since dysautonomia is really sort of rare and most doctors will not be aware of it.

Have you tried a neurologist? Okay, good luck to you!! Hang in there.

Yes.....GIVE PEAS A CHANCE! Juicing has helped me so much with the inflammation and headaches that I get. I juice a red apple-green apple-pear-4 baby carrots-kale and spinach and most importantly for me, for inflammation....GINGER root-about a nickel size, and I always sprinkle a little bit of cinnamon on the top- It's delicious. I have had terrible bouts of gastro-paresis and I believe that juicing has saved me from having to be on the medication that I can't take. When gastro-paresis kicks in, I toss all of my vege juices in the blender and add a little bit of banana and some papaya-but you have to use the green papaya as it is packed more full of the enzymes that can break down foods. I also add about 5 of the papaya seeds as they have the most enzymes. I crave this stuff, but it took a long time to get used to since my stomach rejected it at first. I definitely have to stay away from the citrusy stuff to this day and I had to start out with tiny sips throughout the day and then take a day off. But now I can drink it with no problem.

Also, Rich I wanted to tell you that I got some jelly jars and they are great at keeping your juice air tight. I got them at a hardware store and they were about 75 cents a piece. So great for keeping the juice fresh for a few days. Good post-thanks for sharing.

Also, I had some strange reaction to spirulina twice before, not sure why, but it made me very sick to my stomach. So always be sure to juice things you know you can handle since it is broke down into a molecular form when juicing and can be more intense. I love my blender too-when the fiber is needed!

Green Cheers

Thanks for the information Jangle. Wonderful research. So glad Dr. Levine is open to your thoughts. Good work!

Hello Lilybits. I have been going to Dr. Goodman at Mayo in Scottsdale and he is wonderful-Very compassionate. I don't have POTS, but autonomic neuropathy and orthostatic intolerance. I'm not sure about POTS, but for me, the heat is really difficult, so I was curious about the quality of life situation. I live in the desert and would love to be somewhere with more mild summers. But I've heard that cold winters can be just as difficult-I just have not had to deal with them since I've had this. I was just curious, is the heat harder on POTS? I know for me, if it's between 50-70, I feel great. So hard to find an area with this weather without the high California taxes. But of course Phoenix has the most awesome winters. I hope you can find a location that is better for you.

That was an interesting article Naomi. Thanks for posting. I noticed they studied a lot of people with EBV. It sounds like this is a very common virus. I never had a cold sore or anything or mono and my numbers were very high for EBV. I had one doctor tell me in the early 2000 that it is the disease of the year and it will fade out. He said it means nothing. I guess I don't know one way or the other, but it seems to be a topic of testing in the study posted by Naomi. Although this drug for chronic fatigue sounds promising, the side affects were pretty harsh and most people on here are already having heart problems. Any type of chemo therapy wipes out your good cells, I would want this one to be on the market for a while. In the meantime, I would rather deal with the fatigue. Although, I wish it would go away. I can't imagine why some POTS patients would not have CFS while other would. Jangle, I know you struggle, so that's so good to hear you don't have CFS. I don't have POTS, but when my blood pressure is fluctuating I get so tired, the doctor read my HR and BP and said, just from standing, it's like you're running a marathon, no wonder you're tired. If only it was a marathon. And even when my blood pressure isn't fluctuating, I'm still very very tired. But I've never been diagnosed with CFS, but I think I have "IAST", short for "I'm Always Soooooooooo Tired." But I've also had constant anemia for the past five years. Anyhow, thanks for the great articles girls!