DizzyGirls

That was an incredibly long day! How ever did you make it at all?? And, "yes", my daughters have extreme exhaustion for days after they do something. The day after is bad, two days after is even worse. Then, maybe slowly, for the next week they will be recovering. We plan things very carefully, but, even in so doing, there is always the fallout. My oldest gets the blurry vision, too. Hope you take some time to rest. My daughters do rely on caffeine a lot, so not sure I have any different suggestions. Just get lots of rest!

Thanks so much for your kind words! We are so proud of her! She told her PCP when she was there yesterday and you could see the joy on his face, too. Of course the grandparents, aunts and uncles, etc. all want to know how to get more. It's nice to get good news sometimes, isn't it?! I'll see if I can figure out how to upload a picture (I'm sort of electronically challenged )

My daughter had to be hospitalized this past year the week before Christmas due to gastroparesis caused by her Dysautonomia. At the hospital they had a teen lounge that let the kids paint, draw, just be crafty and express themselves. My daughter is very artistic and did a watercolor. The staff loved it and asked if they could take a picture of it in case they would want to use it in the future for advertising or the like. We signed some forms and didn't think anything more of it. Yesterday I received an e-mail to ask if we were still at the same address, that the hospital had indeed used her painting on a set of greeting cards and they would like to send her a pack. Needless to say, we were absolutely thrilled!! My daughter was ecstatic!! What was a very dark time in her life has now turned into a positive thing. Sometimes it's nice to hear positive things about people on this very long journey that we are all on. Hope this encourages all of the artists out there to keep drawing, painting, crafting, etc. It's good for the mind and soul.

Hi Sarah! About 6 months ago my youngest (almost 17) started turning reddish on her trunk and face! She had a really hard time around Christmas, hospital stay the week before Christmas to insert a feeding tube because of gastroparesis. (Btw, feeding tube is out now!) She developed these symptoms then (obviously a tremendous amount of stress). It happened spontaneously for several months and now it's just when she eats and in the shower. I did read about this phenomenon happening to POTS patients. I'm beginning to wonder if both of my girls have hyper POTS. There are a lot of things that happen that indicate to me a lot of adrenalin going on. Neither are hyper-active people, but their bodies seem to be saying otherwise. All the symtpoms you have trouble with, my girls do too. Our very dear PCP took a lot of notes today and prepared a letter for each of them to the Autonomic Disorders Clinic at Stanford to see Dr. Jaradeh. No Florinef Rx, though. Just didn't feel comfortable prescribing that one yet. Said he would let the experts handle that one. I can't blame him. Thanks for sharing your thoughts!

This discussion is really interesting. My daughters have been on either ativan or diazepam for the past year and a half as they had/have horrible vertigo. They still have the vertigo, but it is kept in control with the benzos. Every time we try to back off a little, they get even dizzier than they are now. So, for us, it's helping, not making things worse. We are actually going in for an appt. with the PCP this afternoon to get referrals for them to the Autonomic Clinic at Stanford. I was hoping to talk the doctor in to trying some Florinef on them while we are waiting to get in (I hear it takes months). Not sure if my oldest has hyper POTS or not. That was a concern for her. My youngest has made a little improvement with her high salt diet and lots of fluids. But, they both need some more help, as trying to function at any rate of urgency just sends them for a loop. KS42 - commotion is still a problem for my girls, my youngest especially. Too many people talking, loud music just sends her into a frenzy. Does stress tend to make everybody worse or just those with hyper POTS? Still trying to sort which things could be a hyper POTS symptom or just basic dysautonomia.

I had a good day last Friday. I just thought I would share it. I thought that the only people I would ever meet with Dysautonomia and Ehler's Danlos Syndrome would be on the forums that I started frequenting at the advice of my mom's pain clinic doctor. These illnesses are supposed to "rare" as the doctors would have us to believe, and we all know that doctor's with any expertise in these illnesses are even rarer. I have to say to these doctors, 'THIS IS NOT THAT RARE! JUST LISTEN TO US!! But....through a strange chain of events, a janitor and the guy with the office next my husband's.... we found out that (the guy with the office) his 21 year old daughter has EDS and POTS. He was merely 20 feet away for the past several years. So, the husband's decided that it was best that the wives talk (we agreed!) and so the wife and I met for coffee and discussed our daughter's symptoms spanning the past 10 or 20 years (depending on which one we were talking about). Through this conversation we found out that her boss's son was just diagnosed with POTS a few months ago! I thought this was supposed to be "rare". Two local people in one day, who knew?! Before discovering my new friend, I had spent the past week researching doctors, POTS and deciding to go for an appointment at Stanford at the Autonomic Disorders Clinic. My friend's daughter and her boss's son both go there and have been pleased. It is always such a process to get into places like this. It takes months to get in, nevermind all the paperwork from the PCP and additional appointments to update the clinical notes (or you'll never get in!). Then, you need to get it through the insurance. Mostly what she had to say was the same thing that I've learned here: the salt tabs (Thermotabs is what she uses), compression pants, Smartwater (my 19-year-old is drinking me out of house and home!) and the miracle drug Florinef. It was so encouraging to hear that their daughter was in bad shape and the right doctor with the right medicine and a host of OTC ideas could give her life back. She is able to go to college and is planning a trip to Hawaii soon. I don't expect that drastic of results with my daughters, as they are on the extreme severe end of the spectrum. But, if they could get out of bed (without taking all day to do it), be able to read a book (without vertigo), go to a store (without spending the next few months recovering), or take a shower (without feeling like they were going to pass out)...it would be a miracle! Until then, we will work on getting in to Stanford and educating doctors on the way!

One of my daughter's primary symptoms is dizziness (hence, my username). In between autonomic flares, we managed a trip to Disneyland. We had tried for years to go. We finally made it, my husband got a special deal and we spent one night at the Disneyland Hotel. It would have been truly "magical" had it not been for the elevator. After two trips up and down the elevator from the 8th floor, they were in full-blown vertigo. They haven't been on an elevator since. That was almost three years ago. We used Meclizine and also Sudafed to keep it under control during our trip. Actually, we are still using them as their condition has greatly worsened. We all had our blood drawn today to undergo genetic testing. We'll see what it says.... Like Katybug said, though, always check your medicines with a doctor or even a pharmacist. Sometimes pharmacists know what interacts poorly or positively together. I also go to drugs.com and go to their "interaction" tab. You can type in all of your meds to make sure they don't interact with each other. Feel better!

My 19-year-old daughter has not been officially diagnosed with anything yet, but we are in the process of genetic testing....so maybe they'll come up with something. Her biggest symptom for most of her life is debilitating fatigue and since she entered teenage years, migraines and vertigo. A couple of years ago she started showing signs of POTS too. She has this unusual personality in that she is always smiling, and even though she will be in the ER, she's smiling. An ER doc commented on that when she was there this past fall. So, therefore (with the exception of that ER doc) nobody takes her really seriously. She REALLY is that ill! She would understand how you feel. She has been on the couch with barely enough energy to brush her teeth since January. Can't find a doctor well versed in POTS and CFS. You have our sympathies and hope you get some much needed energy!

Hi dizzyallie, Thanks for your thoughts...I know you can relate too. Someday maybe there will be some help for us all. Hard to keep positive all of the time. I see so many mothers like myself pouring over these forums in hope of some answers. If we can see these things, why can't the doctors and how come they don't know how to fix them. I think I've given them too much credit over the years. They are, after all, only human (no matter how smart!) db2504, So sorry you have a daughter, too, with chronic illness also. It's tough...trying to live life when it's such an effort. Most people don't get it. Best wishes to you all!

Thank you all for your very heartful responses. My daughter and I so greatly appreciate you all sharing your own personal experiences so that we might benefit. This "crash" for her has been the longest and most intense that she has had. I do hope she pulls out of it. She desires to do things, but her symptoms get worse when she tries...very discouraging for her. She has such an upbeat personality that when she is frustrated, she is really frustrated. We have to switch PCPs soon (insurance reasons) and I'm very leary of anyone else treating her. Although, her current PCP is at the end of his rope, could be a change is what we need. You never know. She is a planner, as someone recommended planning helps. She handles situations much better when she can plan all the details. She does not do well with surprises. No chance for her system to assimilate all the details. We also avoid congested places. Too much stimulation!!! Causes everything to ramp up greatly! She would love to be on the forum herself to meet some of the teens, but using her iphone or computer is making her very dizzy as of late. Thanks for your help!!

Could it be a hive? I know I get them one at a time sometimes. Most people "break out" in hives. I get one or two at a time. Weird, I know. Calamine lotion works as well as hydrocortisone cream. At least it might get you through graduation!

I'm trying to put my daughter's symptoms together and was wondering if anyone had these kinds of reactions. My 19-year-old daughter has a problem when she is stressed, excited, even just looking forward to doing something remotely exciting, her body goes into overdrive and then it crashes about the time of the event that she was looking forward to. I've noticed that her symptoms get so much worse each time something eventful things in her life happens (it doesn't have to be major). Her body cannot pace itself. It sprints marathons and then crashes. (She's the hare in the tortoise and the hare.) Her body cannot do slow and steady. She then ends up with worse then normal vertigo, more severe orthostatic issues, extreme fatigue, and unrelenting migraines. This crash can set her back months. She is still trying to recover from her sister being in the hospital a week before Christmas and then having Christmas at our house. It's been 5 months! Every time these crashes happen, she never recovers to quite where she was before and it is taking her longer and longer to recover. She is mostly housebound at the moment. She only gets out to go to the doctor's or a rare trip to church. What are these episodes and how do we control them? I am so hesitant to tell her anything exciting or that would cause her a little stress because I don't want her body to overreact. She knows it does this and is frustrated because she can't control it. Is this Dysautonomia at its finest?

I know from my family's experiences that talking is exhausting. My mom has said over the years that she has lost most of her friends because of chronic illness. No one has ever diagnosed her, but our old dear PCP said years ago that he felt it was autonomic. He was definitely ahead of his time, that's for sure. She starts getting clammy, exhausted, not quite all the symptoms you are describing. But, I think we all show things a little differently and it could still all be autonomic. I have the overstimulation feeling very easily, as well as my daughters, my mom not as much. She shows hers in other ways. Singing makes them dizzy, conversing, being startled can cause immediate tachycardia in my oldest daughter. So, we have a rule in our house "No Startling". I don't want any heart attacks happening! This all seems to be something that no one gets over in rapid time. I, too, have noticed from my own daughters that a virus triggers some horrible things. We try to keep them away from people who are ill and we are sort of hermits when it comes to winter time and everybody is hacking, coughing, etc. But, there is always the person that says, oh don't mind me, I have a little cold. I just want to scream GET BACK!!! Why don't people stay home when they are sick? Really, nobody else wants it! I hope you feel better (I would say "soon", but that's not realistic), and I hope you find a competent doctor that can put all of your pieces together. When you find that doctor, can you let all of us know? I would sure be interested.

Sounds like an episode of vertigo. My daughter's (aka DizzyGirls) major symptom is vertigo and this is what happens to them. And, oh dear, don't watch tv! My daughters get REALLY dizzy watching anything that moves. (They do a lot of "listening" to tv). The stomach feeling....we observed that when their vertigo is worse it causes a lot of acid in their stomachs and sometimes when your stomach is overacid it can kind of give you that hungry feeling. We use Pepto Bismol to keep the acid under control during those worse times. (We use zantac at night). That woozy feeling too....like on a boat, or as one of my daughters says, like in a fishbowl. Don't turn your head to quickly. Make people adjust to you during these times. Stay sitting up, too. Lying down can make it worse. If your medication regimen doesn't conflict, you might try some meclizine (antiemetic). Hope you feel better soon!

Hi Addie13, My daughter is almost 19 and her migraines start with a bad wave of dizziness that just keeps getting worse and then about 20 minutes later she starts having the headache, and then she would throw up, but we try to get her medication to her before it gets that far. BTW, migraines are usually on just one side of your head. You could actually be experiencing two different things. My daughter has mild POTS, but she also deals with vertigo (when the room or yourself feels like it's spinning) and can tell the difference between the two. The POTS causes a different type of dizziness (more like lightheadedness), the vertigo, more like being on one of those spinny merry-go-round things at the park that kids play on. Only hers won't stop. I wish you the best and hope you can get the treatment you need! It is really difficult to know that there's something wrong and either not being able to afford the test for it, or having to work around all of our just wonderful (note the sarcasm) insurance. DizzyGirls

My daughters have the same problem. Any change in weather, the barometric pressure changes affect them greatly, from the time they were very little. Today was a good day (the first in a very long time). It was sunny and warm, about 78 degrees. They were disappointed we didn't hit 80! Were outside until about 7:30. Mostly when it's going to be stormy, they are worse....whether it be migraines, vertigo that's worse than normal, aches, lightheadedness, dizzy (different than vertigo), etc. My oldest daughter gets the blurred vision, too. Oh, and the pellet stove, that would make them go bonkers! They can't stand the dry heat. I hope you get to feeling better soon and quietly crack a window open in your bedroom and get some fresh air! DizzyGirls

Hi Karen, I'm new to this site, and as I was reading your post I had to double check to make sure it wasn't one that I had written! I have an 18-year-old with EDS III and Dysautonomia and she's got headaches just like your daughter's. Just came back from pediatric neuro on Tuesday and he confirmed that her headaches are migrainous in nature. The triggers that you itemized are my daughter too! Hers also comes with vertigo. She cannot read, write, ride in a car, walk quickly, be in a store with aisles or places with a lot of visual stimulation. She had to quit playing the piano, too, because of the symmetry of the keys and looking down. I could go on... I'm sorry to say that our doc didn't have an good suggestions yet. But if it helps even a little to know that there is somebody else out there (my youngest also!), so two other people out there that are in her shoes. Somebody from this site also replied to a post of mine that is similar and her son had horrible migraines. They gave him IV fluids of Toredol, Benadryl, and Reglan. Toredol is for the pain, Benedryl is good for just about anything, and Reglan is for the nausea. If you do the infusions, just make sure they give the Benedryl before the Reglan as the Reglan can give you the jitters. Hang in there! DizzyGirls

Becia, My daughter always says that the day after may be bad, but the day after that is the worst! DizzyGirls

xRobin, Thanks for the response! You know, I do always think about strokes, that's why I get so concerned. My daughter is already on gabapentin for nerve pain, but i was doing some reading and had seen it pop up several times for migraines. Maybe they need to up her dose. Hmmm. Glad you got off the lorazepam, no problems. She takes it for her vertigo, but it's taking more and more to control it and it's sort of interfering with trying to take other things. Will try to do it slowly and maybe it won't make the vertigo too bad. Thanks! DizzyGirls

My 18-year-old graduated from high school last year and she thought she would try to take one class at the local Community college. She doesn't handle stress well, good or bad. She made it to her second day of class and ended up in the ER that evening. The more you push yourself, the worse off you will be. We were not pushing her, she so desparately wanted to do this. One stinking writing class was all she wanted to do. To be a college student. So, she had to drop her class, has suffered for an entire year, has had migraines every day for the past week, but she never gives up. She decided she didn't need to take the best writing class or be a college student in order to be a writer. So, on days she's not too dizzy (she has POTS and vertigo along with migraines and EDS type III), she's writing her own book! She's about half way done. She's a natural. Also has about 35 songs under her belt. (like you, my other daughter is an artist ) I tell her not to use up all her spoons at once, because you are only given so many for the day and when they are gone, they are gone. My mom used to always caution me to make sure she didn't overdo it. My daughter's never had a normal life. She's always been ill, but she has a tremendous amount of drive, she just doesn't always know when to quit. That's my job. I'm watching her much more carefully now, but it may be too late. Don't wait until it's too late to take care of yourself. You have an invisible illness that only you know how bad you are feeling, no matter how much you are smiling, you know how you feel. It's not up to other people to make that decision for you. Dysautonomia is not something you can push through. I would encourage your family to read some literature on Dysautonomia. If they won't google it, maybe you could print something out that best describes your symptoms. Hang in there and be strong! Dizzy Girls

Hi SarahA33, Thanks for the link! I will definitely look into it. She actually made it through yesterday without a migraine, Yeah!! Don't know how long that will last, but we'll take what we can get. As for the Lorazepam, I was pretty sure that's what it did. Nice to have a second opinion too. Thank You!! Hi Christy, Thanks for the info! My daughter takes Reglan once a day and has for years (it was the only way she could eat!), so we have that on hand. The toredol rang a bell too, because I think that was what my mom's doctor had given her in combo with something else to control an acute episode of vertigo (she was just telling me about this). And the Benedryl, that's always a good one. Thank you so much, it gives me something to go on. And as always, I'll never give up trying to give my kids a chance at some assemblance of a life. They don't know what normal is, but I'd like to give them something as close to normal as we can get. Thank You!! Dizzy Girls

I would second what the person above me said. I would think by your symptoms that it would be considered an autonomic problem (the dizziness). I just read an article from a medical journal about the very same thing. Sounds like the GI and neuro docs need to read it! I would definitely check out the mast cell issue and the eosiniphilic esophagitis, too. Might need to get a new GI doc that's more familiar with these types of problems. When my daughter was in the hospital a few years back with her first round of ng tube feeding, they kept asking if she had a rash. Don't know how many times they asked me that. It was a lot though. Turns out that hers was viral induced gastroparesis from a severe bout of stomach flu. Never did have that rash. Just finished our second round of ng tube. Due to gastroparesis most likely caused by autonomic dysfunction according to her GI doc. Dizzy Girls

Thanks for your support dizzyallie, btw, love your username! Not sure what the treatment would be. I think they just treat the symptoms. She's not had a current one, but a previous one came back normal. March is her bad season of the year, allergies and change in seasons. Always has affected her. She also has an issue with her foot where her bone is growing curved and is causing a tremendous amount of pain for her. She can't walk without it swelling up. Looking at surgery soon to correct the problem. Think this extra stress on her body is triggering the migraines. Stress (good or bad) is a trigger for her migraines. Can I ask you a question? In your signature line you say that you have constant dizziness with episodic vertigo and also a brainstem dysfunction. Do you have a Chiari malformation? Was just wondering what your dizziness symptoms are and how you control it? If you don't want to share, that's o.k. too .

Thanks for the suggestion. There are a couple of things with my mom that made me think vascular, too. Maybe that's what they are looking for. Just wish they would elaborate more. I'm not the type to beat around the bush when they have something in their heads and don't want to "alarm" the patient. Believe me, we've had enough alarming to last a lifetime. Our lives are filled with things that we say "wow, did not see that coming". Sometimes a "heads up" would be nice. Thanks!

I'm sorry, I don't know the answer to your questions, but I did watch the video. Your daughter is so beautiful and a true hero. My daughter just got her ng tube out a week ago. We are trying to maintain weight, but I can see it's a massive challenge. Her gastroparesis is complicating matters so much. This is her second one. My daughter is trying to eat, but doesn't have a good appetite for those things that keep weight on. She has Ehler's Danlos and all the many things it entails - namely dysautonomia. Mast cell disorders are complex and l admire your daughter for creating a plan that she thinks will help her. My heart goes out to both of you - I cannot even imagine going through what she is going through. We have our challenges that just seem to keep coming, but yours is so overwhelming. My daughter got a pack of gifts from the hospital the last time and on it was stamped NEGU - Never Ever Give Up. Dizzy Girls