Maiysa

Hi Emma, This happens a lot to me. The first few years of having dysautonomia I could barely drive. Before I got sick, I used to just buzz over to L.A., from Nevada on a whim, I loved the freedom. Also drove all the way to the midwest with my boys and husband and several times I drove by myself, which was about a 20 hour drive. But now I'm lucky if I can drive about 20 to 30 minutes. It has gotten a bit better over the years as I used to not be able to drive anywhere. I just took my first trip a few years ago to Phoenix and ended up in the hospital on the way there from blacking out over and over again due to the car movement. My blood pressure wouldn't come back up. But I have learned that I can't be anemic if I'm going to take a trip, so if it's after my time of the month I have to make sure I'm up on my iron and I always drank a lot of pedialyte before the trip, no sugar, chocolate or caffeine. And my blood sugar has to be stable before I get in the car. I take a lot of snacks. We usually make me a bed for me to lay in the back, it helps to lay on my side. Also we have ice packs in a cooler in case I go into hypo orthostatic shock, these ice packs and freezing water are my life savers. Doc said they are probably causing my blood vessels to constrict, causing blood pressure to go back up. I just put them on my back and neck if I get the whirly's. Anyhow, it's quite an ordeal for me to go anywhere, but we just had our first trip to L.A. without a single incident and I was able to sit up during the ride. It was really a mile stone!! I also find that if we stop and eat some protein and a lil carb every few hours and walk around, I do better. I have not been able to fly for about 5 or 6 years now, but maybe someday. But I think it's normal to get flushed in the car. I don't know why, for me it's not anxiety as the first time I blacked out I was laughing and had no reason to feel any type of anxiety as I felt fine. I think it is the movement. I know for me curves and going up hill are difficult but have found all the above very helpful. I hope this helps.

Lemonsintolemonade, Can you tell me. Have you been doing something different? I'm sorry, I'm not up on your health issue. I always like positive stories. I was feeling so great in December and was able to ride my bike for the first time in 5 years. It was soooooooo exciting. But then I got the flu 3 weeks later and haven't been the same again, but.....my thyroid medication had stopped working making the autonomic neuropathy worse. I was so happy to hear this as it is an easy fix and am hoping to get back to the bike soon and that thyroid was the main issue. My bicycle misses me so much. Can't wait!!!! Good health to you!

Lynn, Your brain amazes me that you are able to remember all this information and keep it straight. Thank you for the information, as it unscrambled the T3 T4 situation. You are so good. Also, the endo did a full thyroid panel and didn't mention anything that was abnormal, but I think the T4 was slightly abnormal if I remember right, but not positive. I was taking 88mg of levothyroxine, but only 6 days a week and nothing on the 7th day because my TSH was stuck at .06 for over a year and a half, which was making the dysautonomia worse than ever, as I'm sure you can relate to this. I hadn't changed my medication at all, so for TSH to go to 11.3 was strange. So that's how the doc came to the conclusion that it's the iron that's blocking absorption, because I just started taking large doses of iron right after my last thyroid panel. Also, thank you for telling me that my thyroid will take 4-6 weeks to level out because I was going to call the doctor to ask how long this extreme fatigue will be around. So only, 2 or 4 more weeks to go. But I'm still anemic which is probably not helping. Thanks Lyn, Maiysa PS they are still trying to figure out my mast cell issue. Does the treatment for that help you with the dysautonomia at all? I can't take a lot of claritin, so not sure what will happen there. But one disease at a time, I'm saying to myself. haha

OH my gosh....Sif, this is a high number! You poor girl. That's awful. The docs were supposed to give me thyroid medication 3 days after they removed my entire thyroid, but due to lack of communication between the doctors, I fell between the cracks and it took 2 months to get into a endo doc. So from June 4 to end of August, I was living with no thyroid and no thyroid medication. At first I felt better within hours of surgery, but then in a few weeks I started fading and soon that dying feeling came again. When I finally got into the doctor they couldn't believe how hypo I had gone and told me that I could go into shock, so they treated me right away and kept a very close eye on me. Anyhow, it was awful. I don't know what my TSH numbers were, but I do remember TSH being at 80 after a few weeks of medicating me, but I didn't think 270 was possible. Wow...How did they let it get so high?! Or did it just take a long time to realize this was the issue? Do they think this is the cause of your POTS? I know what you are saying about normal numbers, even at normal range I don't feel well, but nothing feels as bad as when it's out of balance. For autonomic neuropathy patients, I was told the out of balance numbers can cause nerve damage, so I get really messed up with just a little bit of out of balance. I'm sure this also affects your POTS as well. Is that true? Good health to you Sif!! Hang in there.

Isn't it nice to live like a normal person!! Good for you. I'm hoping to be right behind you soon.

Two years ago while getting my haircut I completely blacked out for about 15 minutes. I woke up in the ambulance. I think it was the combination of what other's mentioned above because it happened a lot after that and I had to have someone go with me to get my haircut because the ambulance became an expensive ride. But for me it was the laying my neck in the shampoo bowl, then getting up and then tilting my head down and sitting up too long. But now I just go there with a wet head and they cut my hair without having to have me tilt my neck too much. Then I used to get a little panicky about it after the one episode and it didn't help at all. So I always remind myself to breathe and relax. I'm much better with it now, but I know everyone is different.

Hi Lyn, Gosh it sounds like everyone is struggling with their thyroid. It's so strange. Anyhow, my TSH is really high, not sure about the T3 and T4. I have to be on thyroid medication because they took my entire thyroid out, so I have to take a lot. But that sounds terrible that you went into shock from the Armour. I didn't know that was possible. But I understand because I react to the strangest things that naturally occur in my own body. Anyhow, they just put me on synthroid, about 100 mg.'s a day. But I still feel tired. Doc said it is the only brand that they have found that gives a consistent dose. So I'm on that now. Also, I see you also have MCAD, and I'm sure we've talked about it. I forget everything. But I just wanted to tell you that the doctor I went to about MC said that it can cause some thyroid issues. I never asked much about it, but I always wonder if that's why most have troubles with their thyroid. Some type of Mast Cell issue? Hope you are doing well. PS I hope this makes sense, I'm sooooooo sleepy.

Thank you so much for the support Issie, Naomi and Jen. It's been a long three months, but so grateful. Jen, I'm sorry to hear you have autonomic neuropathy. I feel for you. I hope you could possibly find a doctor who is able to realize that these two issues are very connected and possibly making you feel terrible. This is what the doctor told me, and I quote, he said, "Okay, you have a TSH of 11.3, so you basically have zero thyroid working in your system. You are extremely hypothyroid and this will only exacerbate your autonomic neuropathy condition. And we also don't want you to be hyperthyroid as this can also exacerbate the neuropathy as well. So let's try to get you to a more normal level since your cancer was a very weak type" (have to be kept hyperthyroid as it keeps the thyroid from growing back as well as the cancer cells) But the doctor said the autonomic neuropathy is more detrimental to my health than the cancer I had, so we are taking a chance by letting my thyroid get to normal, but like the doc said it was a very weak cancer. They also told me that they will test my thyroid every 6 weeks instead of 3 months because the of the autonomic neuropathy. So if your thyroid is off, this could definitely cause your situation to be miserable and possibly worsen. Also, I went to the neurologist and she told me the same thing about the thyroid as the endo did. Another thing, I had a very sick thyroid from 2006-2008 and I was extremely ill and fading fast. They said the thyroid also became toxic, possibly with a fungal infection as well, which made me feel more sick than the cancer did. I know this because they took the cancer thyroid lobe out first and I only got worse. Three weeks later within hours of taking out the entire thyroid and the toxic thyroid, I felt much better, but of course I still have a ton of issues, but that was a bad one. And it's only been about 12 days since they upped my thyroid medication and I do notice a difference, of course I still don't feel well, but I was really really sick. I'm still extremely tired but hopefully it will get better. And please do make light of my situation, or else I will feel sorry for myself. haha. I always make light of it, it makes me feel better. Jen, I hope you can get your thyroid under control soon. I feel for you! Have you always had muscle jerks? This used to happen once in awhile and since the thyroid has plummeted, it's a few times a day. I hope this goes away. it is scary isn't it. Good health to you!

Oh, I understand your issues. So sorry that you have to deal with this. I see you have young kids. They are so cute too. Mine are grown and am so grateful as I would not have been able to take care of them at this stage of the game. Anyhow, I also take ibuprofen almost daily, but it's children's at least, it's the most I've been able to handle, but I also get stomach issues after too much. But the juice helps. I actually have both blender and juicer. I ordered a refurbished juicer on line. They are so expensive, but got a great deal. I like the taste of juice better but it's so much more work. Blender is easy. The only difference is with the blender you get more fiber, so you have to be sure to drink a lot of water to move that through. Which is great to have the fiber, but always need a lot of water with it. But I do prefer juice. Also, the ginger helps me sooooo much with the inflammation. I hope it helps.

Since the end of December I have not done much of anything. It's been hard and a bit of a downer but I did my best to stay hopeful. My migraines became daily and I wanted to just give up on some days. I started having muscle jerks which scared the bejeebers out of me. There was an ongoing pressure in the back of my head and standing up was difficult. The fibromyalgia pain was at an all time high. And my feet and hands and shoulders started falling asleep from being in one place for just a few minutes. Anyhow, went to the doctor and he ran some tests, my thyroid TSH was at 11.3. I have to keep my thyroid in the hyper mode because of thyroid cancer, so I went from extremely hyper to hypo. I was told that hypothyroid and hyperthyroid also, can make dysautonomia worse. So at least I know and it's an easy fix, just more medication, but will take a while. They think the large amounts of iron I am taking is interfering with the thyroid absorption. So now I know, and am, already after a week of more synthroid, am able to get up and around. Was able to go to lunch yesterday. Yay! AM on my way to just mediocre autonomic neuropathy instead of severe.

That's so nice of him to speak out. Will have to look for the People magazine article. Thanks for posting!

I also can't take B complex. It makes me become flushed and panicked. Scared me to pieces a few times. I took just B12 once and it messed me up. My son also took B12 once and it caused his heart to race terribly. We almost took him to the hospital but we gave him a small dose of B6 and tons of water to have the opposite affect and flush it out. He never did it again. Silly teenager drank one of those energy drinks. Anyhow, I now liquid Floridix that has iron and a lot of B12, since it's liquid, I can control the dose of B12 I get. I only take about a quarter of the dose and I do fine with it. But I only take it every other day since just that small amount of B12 can also keep me up at night.

Hi Hoosierfan, I've struggled with gastoparesis for about 17 years and it is was at one time one of my worst issues, but I have not had to be on the medicine for a few years. I also developed terrible reactions to the medication after taking it for years. Anyhow, of course with gastric paresis your intestines are not moving things through. So first you have to find a way to move that stuff. I can't take anything that makes me have a quick potty break or BM as some say. Any type of laxative usually makes me sick, so I have found that just a few tablespoons of "smooth move tea" that I get at the grocery store helps since I can control how much I take. I drink this every few weeks and have worked my way up to a half cup without any issues, but like I said started out with a few tablespoons. But everyone is different. It's senna so I always tell people it's a natural laxative so be careful especially if you have dehydration like I do. Then I also have to juice about 4 times a week. I can't do just juice as my blood sugar issues are not very tolerant, so when I say juice, I am using it as a supplement to regular meals. So after I have my blood sugar stable I make this juice mix to help things to keep moving and I'm ridiculous about soaking all of my fruit and veges in lemon juice and vinegar to avoid bacteria and always do a good rinsing. I blend 5 baby carrots-1/2 c. of kale-1 c. of spinach- 1 apple or pear-one large chunk of raw ginger (maybe the size of a nickel and 1/4 inch deep), 1/3 of a banana (this is mostly for flavor to cut the bitterness down- and most important is a few good scoops of green/yellow papaya with a few of the black seeds (maybe 6 or8 and then I wrap the rest of the papaya in plastic till I need it again.) The papaya seeds is where the enzymes are to break down the food, it adds a peppery taste and is full of good nutrients. I also add a little bit of cinnamon. And I blend this up with some ice and about a half cup of water and voila! But I started out very slow drinking this mix since it can be too much at first if your not used to it. I get stomach upsets very easily, so I keep it in the fridge all day and take sips. It can be kept for about 48 hours also. And yogurt is also a big help. And quitting wheat helped a lot. I still cheat once in awhile, but I found for me wheat is a catalyst for me in this situation. Let me know if you have any questions. Also, my kids love love this juice mix. I also get creative once in while and add some blueberries or kiwi, nothing too acidic though or too fruity. You can also juice leaf lettuce if kale is too bitter. Also, leaf lettuce is really easy on first time juicers. Good luck. Hang in there. PS And I still take my ibuprofen with no issues as long as I am juicing.

Whole Foods is the highlight of my week. I love the smells and the positive energy this place has. I love that I don't have to make my own juice on that day and they do the clean up. It's not so much the health food as much as it is knowing which ones are best for me. It could be organic all day long, but if I eat organic fruit in the morning, I can feel really sick. So for me it's about knowing what is good for me. I read a lot about health food and it keeps me inspired to take better care of myself. Just like watching girls exercise on the infomericals and I say....I think I might exercise......later. I'm much better at eating good food. I'm not always well enough to exercise but always well enough to eat.

Hi Future Hope, I sent you a pm with my email. So sorry to hear of your troubles. Let's talk.

Becca, I wish I could help you. i actually am not aware of your situation but I just wanted to bump you up on the forum so someone can help you possibly. But I got so desperate a few years ago and called one of the hospitals that deals with dysautonomia on the east coast and just talked to a random person and told them I can't find a doc in my area and they just happened to know of a few. A doctor actually had answered the number I called. It was strange and I don't know how it happened that a doc answered the phone. But I also went on the dysautonomia forum...and they have a list of doctors and I just started calling them and telling them my dilemma. I hope you can find someone soon. Good health to you. Don't give up.

Darlene, In 199??? I had three herniated discs in my neck. C4 C5 and C7 and a sprained occiput, something about the muscle to it. Anyhow, I wanted to tell you that they wanted me to do surgery but I had heard negative things about it. I went to a pain management center and they were very helpful. I did chiropractor care, but I never let anyone crack me. That made me feel terrible, so I found someone who was very gentle and used something called the activator, a simple little device that maneuvers the spine in a not so harsh way. Then I had cortisone shots and a nerve block. It eventually helped. But years later I have another bulging disc but the chiropractor is helping me. But there are always alternatives. Not saying this is what you should do, I don't know the details, but be sure to get a second and a third opinion. I know it's painful though. Hang in there.

Ken, so glad this worked out for you. But I think that is great that you called your senator. I'm learning that with SS you have to be diligent as I heard they are hurting right now with the economy situation. I applied when I was 44, in 2008 and I had a severe case of valley fever and then toxic thyroid and thyroid cancer and then autonomic neuropathy. I was turned down 3 times, then got a lawyer who turned out to be a joke as he showed up maybe 8 minutes before court and had never heard of any of my conditions except autonomic neuropathy. They turned me down again. I was shocked. They said there was no reason I could not work in a toll booth. It made me laugh. I live in Nevada....um where is the toll booth? Then they said I could work in a ticket booth. I tried to explain to them that I didn't pay for all for all of my education to cheat the state out of a few hundred dollars a month. Why would I want to go on SS when I had an awesome paying job before. I said, I'm sick, I can't plan dinner, how am I going to work? Still....turned me down. The judge said, well you look great. And then said, when is lunch to his assistant. Could not believe it! So I have a new lawyer and it's my fourth year, so hopefully this is the year. I've heard Nevada is one of the hardest states to get SS. But I never thought to call my senator, that's a great idea. Thanks for posting. Okay, congratulations to you!

Lyn, Thank you so much for explaining this to me. I was getting the SM mixed up with the MCAD. Okay, that makes sense. Thank you so much for sorting that out for me. You are so good. I sent you a PM, so I don't have to hog the blog.

Lyn, what crazy timing for us both to get diagnosed within the same week. Yay, answers! Good to hear you already had the skin biopsy. Do they think you might have the cutaneous type/ skin type? Also do they think your mast cells are leaking? I read something on this. But I'm sure like me they weren't able to tell you much yet. I was told I can't take the medications until they are done testing because it will affect the results. But I am not a fan of the bone marrow. I am praying that this is not the case. I had a spinal tap last year and I'm quite over these tests. ME IS A CHICKEN!! But I guess I will do what I have to do. We will see. I have autonomic neuropathy, orthostatic intolerance, autonomic dysreflexia, thyroid disease (schmanser and toxic, possibly hashimotos, but they took out my thyroid) anemia, chronic valley fever, GERD, fibromyalgia, constant migraines, etc. and a lot of lil issues. We have many of the same symptoms. But I don't have the sleep apnea situation. Sorry you have to deal with that, (my husband has it.) My headaches are at an all time high. It's debilitating. But I'm hopeful that this is the cause and hopefully the medication will be the cure. But.... I'm sooooo confused with this diagnosis that they gave me. I didn't realize that mast cell had so many branches and that those branches have so many aspects. I was told I have mast cell activation but that it is possibly systemic. The girls on the MCAS site told me that it means it's possibly affecting other systems in my body. But I read that systemic is a tryptase higher than 20 and mine, by the grace of God is only 11. But thankfully they said no leukemia. So I am not understanding the systemic side. But I guess I will have to wait. I go back to the hematologist in two weeks and then to the Immunologist/Allergist in May. So it's a little bit of a wait for me. I hope you can get to the doctor sooner. And I hope one is close by for you. I got lucky that I have one in my area that deals with this. The hematologist told me that he doesn't want too say too much too soon, but he said he is quite positive that this is the cause of the autonomic neuropathy, the valley fever and the thyroid disease. He said he can't fix those other diseases but thinks the medication can help to keep the MCAS at bay to help the other diseases from flaring up. He said, I don't want to sing my praises too soon, but I think the mast cell is the catalyst to everything you have going wrong in your system. Never thought this day would happen. That would be a miracle to have an answer and a ring leader of the crimes committed on my body!!! I pray that you too have answers soon and can get your life back. Please keep me updated. Nice to have someone to understand. Thanks. Maiysa

Rich, I did have pneumonia for two years, but mine was fungal...possible valley fever and then we had mold in our homes. So I had to take a different type of antibiotic. But when I was in the hospital for thyroid cancer and toxic thyroid 2 years ago, they had to give me antibiotics via IV. I took Clindamycin and I looked it up and it is also used for bacteria in the lungs. Anyhow, I was told by the doctors that with my sensitivity it would be the best antibiotic for me. I did really well until the 16 bag and then I got extremely sick to my stomach, which is understandable and that was after the second surgery so lots of other medications too. And it helped me to keep food in my stomach at all times during the IV. My best friend has lupus and they also gave her this antibiotic since she is allergic to most as well. Poor guy.. So sorry, I hope you feel better soon. But so glad you got an answer as to what's the matter lately. But maybe ask your doctor about this medication. Of course everyone is different.

That is great to hear you got diagnosed. Yay Lynn!! But not "Yay" that you have another disorder. Sorry about that. But isn't it nice to have a missing piece of the puzzle. I went through the same thing, where I thought MC didn't apply, so I honestly put it on the back burner for years as another girl told me the same thing on Medscape blog years ago. But then everyone kept encouraging me to get tested....so glad they did. May I ask how you were diagnosed? Do you have to get a bone marrow biopsy? My tryptase was elevated past the normal and then symptoms is how I was diagnosed thus far. But the doc took 11 vials of blood and I still don't feel well yet after that. So we have more tests to take. Also, what is your next plan of action? Sorry so many question.

I'm so sorry that you are having to go through this. I don't know much about your situation, except that I used to do this also after I ate. My autonomic system was so messed up at the time, or at least more than it is now. I was told that your blood pressure does go up an hour or so after eating because of the digestion that's taking place. Even though the doctor told me this, it didn't feel like a normal reaction, especially since I had been eating 42 years at the time and never felt like this. And your son's blood pressure numbers were similar to my numbers also. I did notice even a little bit of sugar, even juice, could make it a little bit worse for me. Like I said I couldn't have any juice or anything that had a tiny bit of sugar in it for about three years or this would happen. It sounds like you are feeding him very well and good foods. What a good mom. I was always into organic fruits and veges before I got sick. It was hard to give up and I used to worry about not getting those vitamin. I also had to give up oatmeal for 4 years and just recently reintroduced it back into my diet a few weeks ago. I also, after 3 or 4 years am able to drink juice again, but I only put a tiny bit of fruit in it. If I add papaya, which is so good for a person, I only add about two teaspoons raw since it is naturally high in sugar. Maybe when it's broke down it might be too much for a sensitive person. But when I was in the middle of the trauma of this situation, it sometimes didn't matter what I ate, this bp situation would happen. I had an undiagnosed fungal infection at the time that lead to autonomic neuropathy, orthostatic intolerance, and now mast cell activation disorder. It might have been a combination of all the above. May I ask, does he have POTS or a different type of dysautonomia? Bless his heart. I feel bad for him. I remember it wasn't fun.

Elizabeth I assume you were possibly referring to me in this quote, not sure since it was an open ended comment. Anyhow, the reason for the confusion about hashimotos was because I had several diseases going on at the same time along with thyroid disfunction that didn't show up anywhere except accidentally on a CT scan. They did a biopsy that didn't show much, so except that the thyroid was growing and was large. I was put into emergency surgery. Not a lot of time for blood tests or thyroid doctors since I was not long for this world at the time. They sent me straight to a surgeon. I was told they thought it was a severe case of Hashimoto's, that was making me sick and that it looked as if it had turned into cancer but it didn't show up on the biopsy so they had to go in to get a better sample. But my numbers were completely normal except for the thyroid globulin which they said was from the cancer. They said it was very unusual for what my thyroid was doing and to have normal TSH numbers and all normal thyroid numbers. They said it didn't make sense. They removed the thyroid lobe and the cancer didn't show up during the freeze, so they sewed me back up. The cancer showed up a few days later at the lab. They thought I would be better after removing the cancer, but I got sicker over the next few days. They did an ultra sound and it looked like cancer on the remaining lobe and since the one side was positive for cancer they had to go in anyhow to remove the rest of it. But when they took out the entire thyroid, that side did not have cancer but it was growing backwards into my neck which is why it didn't show up as a lump in my throat. They said it was toxic but could not know for sure what was in it even though they sent the biopsy to Mayo and another lab. Whatever it was, it was poisoning me every time it secreted thyroxine. I finally had an appointment with a thyroid doctor, but it was almost two months after the surgery in which I was not given any thyroid pills, which the hospital and surgeon missed. I was told I was a patient that had slipped through the cracks. The doctor who had done the thyroid ultra sound earlier had resigned in the mean time and he was negligent in diagnosing me and doing blood tests. So by the time I got to a new competent endo doctor, in which I was in a life or death situation again, since I was not be given thyroid pills since surgery, anyhow, the doctor told me he found some old records and it looked like I had the symptoms of Hashimoto's and that's why I was so sick along with the cancer and toxic thyroid, which he thought was from the fungal infection I had for the past few years which had not yet been diagnosed. That's why the confusion.