DizzyGirls

Very helpful, Katie! I'm trying to sort through whether this is a Celiac thing, a Mast Cell thing (of which you are the foremost authority) or both. I've been reading about the gluten free diet and also the low-histamine diet. I'm trying to not start anything until she's had some testing done, as I don't want to alter any of the results. BUT, going gluten free and low-histamine scares me to death! Don't know what she'll eat!! I never would have even thought of it if I hadn't ran on to the lab test. But, I do remember you had commented one time about my daughter's rash on her face and you said it reminded of you of a Mast Cell rash (flushing). Always kept that in the back of my mind in case it turned out to not be Lupus. What bothers me is that our visit with the rheumatologists (2 of them!) didn't mention anything about this. Just to even rule it out. Process of elimination. Thanks for your help!!

As most of you are aware, my daughter has been miserable for a good part of this year. We've been to one doctor after another with almost no luck. An ER visit did prompt a trial of low dose prednisone and her PCP started her on Plaquenil as there was suspicion of Lupus (youngest daughter had been on it a couple of years ago with some success, put her back on it, too). But, I've been reading, A LOT! My daughter told me the other night that her ears often feel hot and they itch, too. She also said that her hands itch sometimes, also. One of her more common phrases that she says is I ITCH!! I just thought it was dry skin because she's fair and it's sensitive. She's always had this, since she was little. But, oddly enough, in preparation for her appointment with a rheumatologist that didn't hardly give us the time of day, I ran across some lab results that I had somehow missed. Someone had run a test for Lipase. It was low, significantly. I looked it up on Google, and found that one possibility (the others were way out there, types of cancers and such) was Celiac Disease. The more I looked into this, the more I was aware that Celiac Disease encompassed all of her symptoms. Even the hair loss! (which most of her doctors dismiss). So, I'm reaching out to all of you. If you wouldn't mind sharing some of your symptoms that lead you to a diagnosis and what type of doctor it was that did the diagnosing. My daughter also has high tryptase levels and has also tested high for plasma histamine. We are afraid to try any diets before finding a way to get tested as we may be dealing with Mast Cell issues and Celiac Disease (oh boy!). Thanks for your help! p.s. going to skip over and re-read Katybug's favorite paper on Mast Cells!

My daughter had a bone marrow biopsy a couple of years ago, she was 17 at the time. She had a couple of elevated Tryptase levels, one 17, one 13. Plasma histamine levels at the time were high also. I can't remember if she had to stop her allergy meds at the time, you might want to double check with the doctor on that one. My daughter's results were no mast cells were found in her bone marrow, which was good. They did find that she didn't have any stored iron, though. Still working on that one. I hope it goes well for you. I insisted that my daughter be somewhat sedated and it went very smoothly. She agrees it was one of the less painful tests she's had, because of the sedation. It was concluded that she did not have mastocytosis, but very active mast cells. Still active, but they are being treated with h1 and h2 blockers. Katie is an expert in all things mast cell, so would encourage you to check out her article, she's a wealth of information! One thing I thought of was that my daughter said that the place where they went in to get the bone marrow was a bit sore for quite some time. She said you wouldn't want to be doing any heavy work for a couple days after. I hope all goes well. Best wishes to you!

Oh yes! My mom and my daughters all three have this problem. Talking is extremely difficult for them. Just terribly exhausting. Heart rate and just use of energy. My mom has always said that people think if they call on the phone just to chat and see how she is, that that is ok. Should be ok to them because she didn't have to get ready or go anywhere. They don't get it. Neurologists! Ha! Our neurologist told me that I frustrated him! Actually said that to my face. Yes, most of them seem to have this incredible "God" complex. Of course we are all anxious. Wouldn't they be, too, if they had to live with all of this!! Hang in there!

Well, it's 9/14, almost a month and a half later, and we finally got someone to listen to us. It came in the form of a PA medical student that's been working in our PCP's office. She said, has anyone ever suggested Lupus to you?? I said, no, but we've suspected it for quite some time now. She couldn't believe no one else had spotted it, (except for our hematologist, also, who had run the initial labs in July to give us some clues). Ran through all the list of criteria, my daughter had all but maybe one. She's running more labs than most people have run in a lifetime (she'll have to really hydrate first!) and supposed to see her and the doctor back in two weeks before her rotation ends. I think she must have been an angel! Oh, and I almost forgot, gave us some medicine to start as soon as we have the labs drawn!

I'll throw my two cent's worth in here, I get this too. Ever since I was a kid. In my 20's and 30's it happened a lot at night. I would dream I couldn't breathe, and in reality, I couldn't. Last winter I had a bad cold type virus and my breathing was soooo bad. The doctor put me on Flovent, it's an inhaler. Not like albuteral (I have one of those, too, doesn't always help, though), but it's a corticosteroid I think. You have to be on it for a few days to notice a difference, but when I don't use it, boy, do I notice a difference. All these years.... Btw, my Zyrtec helps, too. Seems like mine might be an asthma/allergy thing for me, so don't know if it would apply to you. Would think yours might be more of an autonomic, blood not pumping enough oxygen through to get to your lungs. Do you have Ehler's Danlos, by chance?

Yep. My daughter was just diagnosed with "new daily persistent headache". Call it what you want, she starts her day with a migraine and ends with one. Like Katybug said, there are degrees to it, but it's always there. It was also discovered that she has what's called idiopathic intracranial hypertension. Means she's got too much spinal fluid. Talk about headaches. Migraines, other types, you name it. Katybug - the weather! Yes! Why is it that fall just plays such havoc with everybody?? (Rhetorical question) My daughter has been so, so, so very bad lately. It's windy, foggy, cool - well - fall. Not giving advice (please ask your doctor), but, maybe your blood vessels are caught in a spasm? Wonder if a vasodilator would help? Just brainstorming...please always ask someone who know what they are doing. Hang in there, you are in the right place!

Thank you both for your words of wisdom! I won't dismiss her nerve issues, I'm leaning toward the fact that this may, indeed, be caused by the increased spinal fluid. I gave her a whole Diamox 250mg last evening (considered a low dose), and I could hardly keep her conscious. She kept passing out on me. Propped her legs above her heart, etc. and she eventually snapped out of it, but took a while. Also triggered a big migraine. What the heck?! I know she needs it, so I'm going to quarter the pill and try 1/4 at a time to let her body adjust to it. She takes a lot of meds already, so I'm sure that is playing into it. My youngest was tried on it about a year and a half ago and she had the same reaction. The headache doctor that we see did a cheek swab test when we were there and it will be processed to see how she metabolizes medicines. Might be interesting. I, myself, am allergic to sulfa drugs. I got a butterfly rash across my cheeks when I was younger. So, that being said, we are going into this with some fear and trepidation. Had one more question...just noticed that Diamox is actually a diuretic. My daughter takes salt tablets and needs all the fluids she can hold on to. I am wondering if the salt and extra fluids could actually be causing more harm than good when it comes to the pseudotumor cerebri (excess spinal fluid). Oh my goodness, what if the treatment for one condition is causing the other??!!

It's been a rough past few months for my family. Dealing with oldest daughter's symptoms has been so extremely challenging. I was just rummaging through my brain and was hoping for a little help in sorting symptoms. So, here goes! Recently diagnosed with a pseudotumor cerebri - basically too much spinal fluid causing pressure on her brain. Diagnosed by lumbar puncture. Saw doc yesterday and started daughter on Diamox. That explains the worsening headaches and migraines, blurred vision (unless her POTS is acting up), squiggly lines in her vision, pulse beating in her ear, fullness in ear, pressure in neck. Ok. Blood pressure has been strange. Some of it can be explained by some melatonin that she was taking. Not supposed to cause low blood pressure, but it does. Had to stop that. Bp had gotten down to about 70/53, p. 164. So, that is leveling out some, but still some strange fluctuations in bp and hr that didn't used to be there. The doc we saw yesterday said that if her bp was dropping when she stands, then it's not POTS. Thought POTS was mostly a rise in heart rate, BUT, that it was possible for the bp to drop too. Can someone clarify that for me? Also, hyper-POTS. Is that when the bp is high and the heart rate is high, or is that when you have constant adrenaline surges? Think I've got myself confused over the last couple of months. Thought I had this all figured out, but I know some of you have been doing this for a very long time, so I could use your help ! There was also a recent post about someone, http://forums.dinet.org/index.php?/topic/27866-back-to-square-one-sorting-symptoms-could-use-some-help/&_report=1734 We've got an appointment a week at a major University for the next four weeks and I am not sure how we are going to do this. Any thoughts? We are exhausted!

My oldest daughter had anxiety while on Midodrine, and she doesn't usually ever have trouble with that. It was strange. It resolved after we stopped the med.

My daughter's mostly started after a virus, but I have to always wonder if the iron pills that my daughter took all of twice, was an originating factor. Didn't start with the usual upset stomach (as most iron does), had a bad POTS reaction. Lightheaded, dizzy, tachy.

How my mom manages - hmmm... well, a stiff cup of coffee in the morning (caffeine helps), sheer determination, and, yes, a lot of meds. She knows I need her and her granddaughters need her. She may not be able to remember as well as she used to, but she is still a wealth of information. She's printed out a ton of medical information that she's ran across over the years and she has a little box that she keeps instructions from her old, beloved doctor, as to how to treat some of her severe issues that have come up. She's been dealing with headaches (migraines and other) since she was 13 years old. Hope you do well and find some help soon!

Di, I don't know how many times I have voiced to any one who will listen that if doctors worked together instead of parting us out, that they would have the complete puzzle. And, I have to say, that you are absolutely hilarious. I read your earlier post and started cracking up! Thanks for the laugh! (Entertainment for the Monkey, I love it!)

Sometimes taking a medicine to help calm you can calm the very disagreeable autonomic system. My daughter has been plagued with crashes this year. The most severe was after the 4th of July. Still battling with it, the burning, tingling, numbness, lack of circulation. Most likely her very overactive ANS. Hang in there, and hope you can get some help tomorrow.

Amyschi, So I just Googled spinal stenosis because I hadn't actually heard of it. My oldest had neck x-rays done a couple of months ago and I will take them back to her chiropractor (who is really good at ready x-rays) and ask her about it. She's the one that has identified a good many of my daughter's issues and where they are coming from. I seriously think she has a photographic memory because she remembers everything that she's ever read! Amazing! Both of my daughters have been evaluated for Chiari and, so far anyway, doesn't appear that is the case. Now, that being said, I do know that an upright MRI is the most accurate in diagnosing Chiari, but your insurance also has to agree with that and so far we can't the doctors, insurance, or anybody else to help us out with that. I do know, though, that both of my girls have very hypermobile necks, thanks to EDS III. I have seen tremors go away instantly when our chiropractor adjusts my daughter. That is what is really confusing, too. Seems her neck is having something to do with all of her muscle spasms, nerve pain, tremors, etc. Regarding the Chronic Subjective Dizziness (Persistent Postural Perceptive Dizziness) I totally agree with you that this is not triggered psychologically. We have an appointment with one of the doctors that wrote a medical journal article regarding this and he agrees that there is an amount of psychological issues in people with this. I am going to set the record straight that there is a dynamic group of people out there that suffer from "dizziness" and it is NOT as a result of anxiety or any other psychological issues. No study needed. Just spend an afternoon on this site, and that would be study enough. I found one article that said they believed it is from dysautonomia. The article our doctor wrote was just published in February of 2016, so he might as well be made aware that they are totally missing a whole group of people. (Of course, I'll be nice) My mom is 72 and her beloved family doctor diagnosed her with dysautonomia roughly 30 years ago also, but there really wasn't anything they did about it. He read and read, but medical advances being what they are, took until now for these doctors to finally put the pieces together. It's complex. That we all know. Hang in there and maybe we will all help these doctors put all these pieces together so that it doesn't take another 30 years for ourselves and our children to feel better.

Thank you Sarah! Well, here's hoping that we are not in the 3.5%!

Hi Sarah! Thanks for posting the article. I tried to access it, but said that it couldn't be located. Went to the medscape website itself, found the article, but it wouldn't come up. I'll try again later. Think it sounds like a great article!

So glad your appointment was considerably better than the last! Yea!! I hope you start feeling consistently better with the new meds.

Katybug - I think you're right. Think I will tell them all and see which one has that lightbulb moment! Yogini - She does have compression socks and wears them some. Sometimes it helps, most times it doesn't. The problem is that she has a couple of ingrown toe nails and they squeeze her toes. I need to get her some without toes. Right now, she is having an issue with her skin burning. We think it's nerves, mostly her hands and feet and so it's very uncomfortable for anything to touch them. The neurontin has been helping with that, but it got bad last night. We have an appointment with a rheumatologist tomorrow morning as we think she might have Lupus. She has a lot of symptoms. That being said, I do know that people with autoimmune diseases also experience Dysautonomia. This recent "flare" of whatever-this-is could also be wreaking havoc with her POTS. There's so much going on it's really hard to separate them. Thank you both for your help. Sometimes it's hard to see the forest through the trees!

Hi Katybug! You know, funny you should mention your endocrinologist. My mom was just referred to one. She's not happy about another doctor appointment, but, showing my excitement, she said 'I knew you'd be excited'. We had just had a conversation a couple of weeks ago and I had said maybe an endocrinologist might be in order. It seems a lot of POTS issues are related to adrenaline, hence the endocrinologist. It seems my mom's pituitary gland is not functioning. We highly suspect she has EDS and Dysautonomia also. Anyway, I think I have figured that my daughter's issues are medication related, but for the time being she needs these meds. I'm thumbing through my brain wondering which doctor to approach about this. Her PCP doesn't like her being on the Florinef (obviously doesn't understand POTS) and I'm think that a bump up in that might do the trick. She's got a headache doctor (a neurologist who, unbeknownst to me, wrote a med. journal article on POTS, so he does get it), but we just met him, and then she's going to a new rheumatologist on Thursday. Probably not her. I guess my confusion is that we've got several different doctors prescribing her meds. Possibly her ped. neuro who had originally prescribed her Florinef??? Last time we were there, though, he said that I frustrated him. So, you can see my dilemma. Which one would you choose? p.s. So glad that you were able to go to a doctor appointment and do some gardening in the same day!! It gives me hope because I know that you struggle with a lot of the same things my daughter does.

Have you ever tried melatonin? I know it seems like a nothing drug, but, combined with my daughter's other meds, it puts her out like a light! She takes pretty high doses of some meds that would put most people to sleep for a few days, but she actually functions on them. I sort of chuckled to myself when her doctor prescribed it for her migraines. I'm not sure it's helping them (maybe, she's had less as of late), but it sure is helping her get to sleep quickly! Seems like you are having a hard time staying asleep, they do make and extended release form of melatonin also.

My daughter's heart rate and bp has been somewhat erratic the last couple of weeks and I think it's because of an increase in her neurontin and an addition of another medication. She takes 0.1mg of Florinef in the morning. How do you manage to keep bp and heart rate at a good level when medications make it wonky? Here's a few of her current random readings as of late: 100/69 hr. 112 while sitting. A few minutes later she stood and it was 84/58 hr. 154. A couple of nights ago it was 89/64 hr. 113 while sitting, a few minutes later while standing it was 83/65, hr. 140. The last couple of weeks have been a real mish mash of combinations. She tried propanolol for a bit, but stopped it because she started to have this bp fluctuation when she stood. It was great for her heart rate as long as she was sitting. Any thoughts?

Consults are stressful, aren't they!? We have one on Thursday with a rheumatologist that I don't particularly care for, but rheumys are not a dime a dozen, so I'm going to take a different approach this time. As far as presenting your bp readings (which is a very good thing to do), I would give him/her a chance to get through the formalities and then present them to the PA. I have found that sometimes PAs listen better than the actual MDs. EDS would most certainly be important in your condition as the primary reason that you have Dysautonomia. My daughters have EDS III. I know our cardiologist gave us an answer like "everybody's being diagnosed with EDS these days". Well, yes, because they've just now figured out how to diagnose it. I actually have a Fibromyalgia doctor that we were seeing for a while write to me occasionally regarding symptoms in my daughters to see if they were matching what she was seeing in her practice. It was a desire to not let anyone slide through the cracks. Great doctor! If this doctor won't listen to you and dismisses things that we all know are important, might be time to find a new doctor. That being said, sometimes that is not an option (insurance, location, etc.). I have made the mistake of using words that are actually diagnoses and not symptoms. When describing my daughter's dizziness, I use the word "vertigo". I know it's vertigo, but that is a diagnosis, not a symptom. So, I'm trying to tell my girls when we see all of our doctors, to try and go about the approach of describing their symptoms instead of using the term for the diagnosis. It's hard to do, but it might work. Also, try to bring a print out of a list of your current medications and your dose (it will speed things up), a list of your recent symptoms that brought you there, and maybe a list of things that have already been diagnosed. We are going to the rheumy to see about possible Lupus for my oldest, but I do intend on telling (nicely presenting) her about my daughter's EDS and Dysautonomia (POTS, Vasovagal issues). Our parts are all connected to one body and doctors who "part us out" do us all a great disservice, as we all know Dysautonomia and EDS can affect almost any part of the body. Hope your appointment goes well!

Can really relate to everybody's symptoms! My daughter's have had vertigo for years now. Kaitlyn - you describe perfectly my daughter's vestibular migraines. There is no vertigo like the sudden onset of a vestibular migraine! For anyone interested, I've been doing more research again on different kinds of vertigo, dizziness, lightheadedness. We have been seeing a headache doctor at the university near us and he had mentioned, in an article that he wrote, something called "chronic subjective dizziness". Looking at other articles in addition to his, it appears that it is started by vertigo, but the "chronic" part of it isn't necessarily considered vertigo (although, I believe there is a fine line between the two). What my daughters explain in trying to describe what we have always considered "vertigo", is the motion of themselves moving/spinning, they really do move, you can see it (as opposed to the room). It is worsened by any kind of stimuli (i.e. busy patterns (wallpaper, carpet, someone's shirt), music that is too loud (the bass is especially bad, can cause my youngest to pass out in a matter of minutes), environments that are too noisy, busy, hot, etc.) ) Apparently this "chronic subjective dizziness" (which, by the way, is exactly what my daughters describe) is treated by medications (namely SSRI or SNRI's), Cognitive Behavior Therapy, and Vestibular Rehabilitation Therapy. In one of the articles I read, it said that Cognitive Behavior Therapy (CBT) doesn't work well if a person has had it longer than a few months (my girls have had it for years). From what I've picked up, the CBT is to make sure a person doesn't avoid things because they are "afraid" it might make them dizzy. My girls definitely don't fit into that category. They will push themselves until they collapse because they like to do things (although, because of constantly pushing themselves, my oldest is in pretty bad shape. Don't think CBT could have prevented that.) This is where it gets interesting...SNRIs are prescribed when there appears to be an overload of norepinephrine being pumped into the body. Sounds a bit like HyperPOTS to me. I'll bet if they interviewed a group of people with "chronic subjective dizziness", think they might find a good number of them had a lot of POTS symptoms, too. So, is it POTS or is it "chronic subjective dizziness" or are they all part of the bigger picture of "Dysautonomia". One of the articles that I read about this gave it the title of PPPD (Persistent Postural Perceptive Dizziness), but it's the same thing as chronic subjective dizziness. It was given the name of PPPD in 2014. That's how new all this research is. I know a lot of you on here have a lot of trouble with either vertigo, lightheadedness, and/or dizziness. It's an extremely debilitating thing to live with. Reading these articles shows me that people are researching this and maybe one of us will stumble across one good doctor, who, through spreading the word on this site, might be able to help us all. But, for now, when people share their symptoms and we can all brainstorm, find new studies/information or, at the very least, encourage each other and know that we are not alone in this. Hang in there!!!

My daughter's new headache doctor was going to do this testing on her at her next appointment. We'll see what it says.... She cannot take ferritin, not because it upsets her stomach, but it makes all of her POTS symptoms so much worse. It was a very strange reaction, but have to think it was how she metabolized it. I kind of think she metabolizes certain meds quickly. Just my observation...