DizzyGirls

My daughter is currently seeing her hematologist for possible mast cell issues. She just did a 24 hr. urine culture and had some blood drawn to check urine histamine levels, plasma histamine levels and tryptase levels in her blood. We'll see what comes of all this!

We have been to Stanford and UCSF. Stanford was great! We were able to see the great Dr. Jaradeh. He was so kind and knowledgeable and the only doctor appointment that I've taken my teens to that I didn't have to educate the doctor. It was so nice. I feel it's a pity they just diagnose and can't follow up. It's kind of a well-known fact. But, that being said, I would highly recommend a one-day trip for diagnosis and testing. Now, I have a friend's daughter who sees Dr. Muppiddi (at Stanford's Autonomic Clinic) and he is good at follow-up. So, either one. UCSF has a new Autonomic Clinic, but I'm not sure if they are only seeing their current patients there or if they are taking people on the outside yet. You could call and ask. Hope this helps! Best wishes!

Thank you Corina for your kind words! Hope we are on the right track! TCP, I was looking into the low histamine diet. My daughter is already lactose intolerant, so we've made that adjustment, so what's another! My niece was actually eating spinach one day and broke out in a rash. Think it runs in the family. Probably we will have to just cut down on some things, as totally eliminating everything that is high histamine will probably be too much for now. But, because I mostly cook from scratch anyway, that will give us a good start. Thank you!

My daughter was just telling me about her legs tingling after wearing her compression pants today. Only the second time wearing them. Don't know if she had tingley feelings after the first time she wore them or not. It was funny because I was just sitting here looking at your post as she was telling me this!

So, here I am again. Do think I've got this figured out, once and for all. I've been reading all of your comments and suggestions! Thank you all! I am back to my original suspicion of IC or something else that is causing an inflammatory issue in the 'nether regions'. Got the results back yesterday afternoon from her urine culture and it said no infection. So....we are back to square one, but with the realization that this is most likely the cause of everything. The OB/GYN from UCSF said that sometimes people feel better after an antibiotic, not because they had an actual UTI, but because there was inflammation going on and it helped to reduce that. I think that was what was going on. She did had an actual UTI at some point in here because the labs came back as positive for e-coli. The yeast infections were based on the symptoms that she was feeling and that made logical sense, but really, I think it was inflammation. Katie, I've been reading some of your posts on mast cells and think that this could be an issue with my daughter. She's already had a bone marrow biopsy to check for mastocytosis as she's had consistent labs where her tryptase levels were high. The bone marrow biopsy came up negative, so that's good. No mast cells in the bone marrow, but I do think that her mast cells are too active, which would be MCAD, right? I am in the process of reading the very long medical article on Mast Cells from a recent post. Very enlightening. I am thinking there is a link between my daughter's mast cell issues and her current inflammation problem. Nothing like a little brainstorming with a bunch of caring people who ought to have their MD's!

My daughters were thought to possibly have mitochondrial disease (MELAS to be specific). We had genetic testing done and it was determined that they do not. It was whole exome sequencing done at UCLA. All they use is one vile of blood. Now, I do know that the "gold standard" for mitochondrial testing is a muscle biopsy, but my daughters' pediatric neurologist thought that might be too much for them as they are quite ill. In the end, they were both diagnosed with Ehler's Danlos Syndrome, hypermobility type, and dysautonomia. I would read anything you can get your hands on (medical journal articles would be the most accurate and detailed). A lot of things can cause a secondary mitochondrial issue, and that is what we are dealing with concerning my girls, most likely the EDS.

Hi all! So, the macrobid does not seem to be working. She's feeling worse and worse. Temp around 99.5 most of the day today. Nausea, headache and chills. UTI does not seem to be going away and yeast infection is back full force. I don't think the fluconazole tablet she takes every day for the yeast is doing a hill of beans! The OB/GYN mentioned that the fever could be from inflammatory properties, I agree, but I don't think that is the case because she's having some of the, well, more unpleasant issues with yeast. Inflammatory properties from the fact she's still got a yeast infection and not secondary to something else. We've tried OTC yeast treatments, yogurt, probiotics, creams, antifungal pills. For the UTI we've done Macrobid twice (did not help), Cipro twice (gets rid of it, comes back after about 5 days), Levoquin once (came back after a couple of weeks this time), back to Macrobid. Is anyone aware if there is something else (mast cell, autoimmune, EDS, some sort of imbalance) that causes these types of issues?? Round and round we go with yeast, uti, yeast, uti....it's never ending! Doctor's just can't seem to put it all together. Has been evaluated for diabetes (came back normal). I know Dysautonomia and EDS can cause bladder issues, but this is infection, does that still hold true? Any help is much appreciated. Also, thanks Sarah, for the sonogram suggestion. She had one back in September or October. It came out normal. Also had a KUB x-ray and that was normal, too. Before this all started (with one round of Doxycycline), she had only had one bladder infection in her life and had never even had a yeast infection.

Quick update on our appointment. Ugghhh!! If I see one more doctor that doesn't believe a teenager can have interstitial cystitis I'm going to scream! He was a nice enough doctor, but was too much old school. He wasn't really interested in her past chronic history of yeast and UTI. He said that yeast isn't the same as UTI. I said I know that! I was trying to explain what was happening over the last six months. He was having too many problems with the computer and typing while I was talking. Probably an excellent doctor for the elderly with no other complicating conditions, but definitely not for us. To top it off, they had a therapy dog there to greet us and show us our way, but I'm really allergic to dogs and I left coughing and all stuffed up. Still trying to get my allergies to calm down. Guess I'll have to take my Zyrtec early. Did prescribe Macrobid for her. If it works, it was a UTI, if it doesn't, it's more than likely IC and I'm going to have to start calling around to find someone whose capable of taking my daughter's difficult case on. Think I'm going to go grab some ice cream and watch American Idol so that I can forget about this miserable day...

Katybug, Thanks so much for the link! I just read it. I think this is it. I have considered this off and on, but I never knew that it had the potential to get this severe. It's funny, but I've tried to give her cranberry tablets off and on through this and they always make it considerably worse. I'll bet this is what she has. Going to the urologist at 3:00 today. Thank you so much for all of the other info, too, dancer65 and Sylvie!! I knew you all would come through!

My daughter is still having major issues with alternate bladder and yeast infections. It started with a yeast infection, then went to a bladder infection, then back to a yeast, etc. You get the pattern. This started back in November. Thought we had the yeast under control about a month ago, but the medication daily dosage ended abruptly after 3 weeks and it came back within about 5 days. The UTIs go away for a couple of weeks after an antibiotic (last one was levofloxin) but then return. My daughter is taking a daily dose of fluconazole, and has been on Macrobid, Cipro (twice), and levofloxin for the UTIs. We are obviously missing something, but even the gyn at UCSF doesn't know what to do now. My daughter has an appointment with a local urologist tomorrow. Very compassionate office woman squeezed her in so that she wouldn't have to go through the weekend with a raging UTI. So nice! Has anybody ever had this happen? Her autonomic symptoms are just going haywire. Her heart rate keeps going up and down as well as her temperature (it's now 99.6 usually 97.6). When it's high she gets really shaky, vision gets blurry, and, of course, her vertigo gets even worse. The fatigue has just gotten beyond tolerable. Could this be related to something else? I know she has some mild issues regarding overactive mast cells, is this possibly related. Anything, absolutely anything anybody can think of that might contribute, please let me know. We do tons of probiotics, mild soaps, also she can't take the cranberry tablets (cause really bad bladder cramps). Lots of fluids, etc.

Would you mind elaborating a little on the symptoms you are having?

Hi Sean and welcome to the site! Don't forget that with all that salt you need to hydrate. My daughter drinks at least 2 liters of Smartwater (or housebrand) electrolyte water a day in addition to her other beverages (about 4 liters total). Caffeine helps her, others, though, I know, it does not. Might have to experiment with it. It tends to help the blood vessels constrict more, in turn, helping her blood pump more efficiently. In a rush today, but that might get you started. It's so very important.

Katybug, You weren't the only one that likes the cooler days! My 19-year-old loves warm weather, she just feels really lousy in it! It was warm and dry here in the SF area about 2 weeks ago, just really beautiful weather, but she felt just awful. She likes it about 65, cloudy and humid. Don't know why, but she just feels better. db2504, My daughter doesn't get the adrenaline rushes, but her head feels like it is going to split in two. In fact, it has been getting so bad, that her neuro just put her on some amitryptiline to see if that will help. Her heart rate will fluctuate more and she battles vertigo also, so this gets even more severe in the spring when it is warm and dry. We have been getting significant amounts of rain lately, so it has also been helping with a horrible pollen count. Do the spring pollens bother your daughter? Any weather change and especially season changes (spring and fall are the worst) are really debilitating for her. Also, can she take motrin in the higher doses? It might help. Next step would be prescription meds. I know my daughter can't take Motrin anymore because of the Florinef. Hope your daughter feels better soon!

Gastroparesis is a finicky condition. I think everyone has to find their own thing that they find goes down well. My friend's daughter lived almost exclusively on noodle soup and burritos. I have not got the slightest idea how she can tolerate burritos, but it was something that she could. What about hummus? I don't think that's soy, is it? Chickpeas, right? That was one suggestion my daughter's GI doc suggested to her. Never in a million years would (or could) she eat hummus. How many 17 year olds do you know that eat hummus? Maybe more than used to. But, anyhow, you might like it and it has a lot of protein. Sounds very much like a case of just eating in general that is a problem. I know you said the Reglan didn't work (gives me the shakes, too), but maybe Domperidone. You have to have a doc willing to write the rx for it, though. It is better than Reglan because it does not cross the blood brain barrier (no shakes!). I do hope you find something you can tolerate soon. Best wishes to you!

When my daughter got her feeding tube out, she lived on noodle soup and toast for a few weeks. Eventually she added in some pasta, and eventually, hard boiled eggs. It's been a year since she got it out and she has advanced to greek yogurt. She still can't stomach meat. It does look, smell, or appeal to her in any way shape or form at the present time. But, greek yogurt has been a good staple and is low in sugar and high in protein. Sometimes she will eat two a day (lunch and dinner). I think the key for her was finding things that had enough protein and no fat. Things with high fat sit like a ton of bricks. At the end of her feeding tube time, her formula was sitting in her stomach and pushing the tube up out of her nose. She found that the formula was getting harder to digest and decided that maybe normal food would set better. We slowly added things in (operative word "slowly") and she began to tolerate more things. The doctor said that since she was eating three meals a day (yes, they were very small), and the fact that the tube was creating sores in her nose, it was time to pull it out. One thing I would recommend is milk. There is a lot of valuable nutrition in milk and liquids always go through faster than solids. My daughter started with the fat free version and now is drinking 1%. You can do a lot of things with milk if your stomach can handle it, but if you are at that point of hospitalization and trying to avoid a feeding tube, I would suggest just drinking it plain or with a dash of chocolate syrup. Do you take anything like Reglan or Domperidone to make your stomach empty faster? I hope you feel better soon. This is no fun!

Thanks! Appointment is tomorrow and none too soon!

Hi Amalia! My daughter had her second shot a couple of weeks ago and has been doing well, as far as the shot goes. She still is having a horrible time with yeast and uti infections (going round and round) and is seeing an OB/GYN this week at UCSF. The shot settled down her hormones for a couple of weeks. Not sure for how long as with this yeast infection she is also having a fever and we aren't sure what is causing what. I'll keep you updated! So far so good on the shot, but sure wish we could get everything else to settle down!

Green, The laser we bought is a Warp 10 by Quantum Devices (about 650nm). It is the one used at the University of Sydney, same one used for their research with Alzheimer's and also the same one that was used in space with NASA. This is a bit off-topic, but I was told by the researcher that, yes, the skull is very thick and the light does not penetrate well through it. He said to use it on the shin bones, that the bones are not as thick and that it would be absorbed through the bone marrow and possibly help the blood cells with increased mitochondrial production throughout the body. Also, my daughter's severe headaches seem to be coming from her Florinef and hormones. The laser does work well for the muscle spasms that my girls have trouble with and for speeding up motility in a sluggish GI tract. It actually doesn't get very warm, and these are a bit pricey, so I think that if your head is cold, I would find some comfortable hats!

When my daughter's POTS is acting up (high hr), she gets real lightheaded (not to be confused with vertigo) and her vision will blur. Significantly, sometimes. I would say that I probably wouldn't try to color when this is happening because it might make the dizziness worse. I think I wouldn't color too much while this is happening. Seems to me that I've read that you get vertigo some too? I would be careful doing things that take too much focus until the symptoms subside. Hope you feel better!

We have a cold laser (low level laser) and my daughters use if on their heads, hands, shoulders, neck, and GI tract every night. It is supposed to increase mitochondrial production in cells and it seems to help their muscles (they have EDS type III). It was helping the headaches, but it's not doing a very good job right now. Spoke with a researcher from the University of Sydney (e-mail) regarding the effects of nerve regeneration and also the effects on people with Alzheimers using a low-level laser. There's a lot of good literature out there on it. But, that being said, I don't think that there is just one thing that is going to help us all. It takes a combination of many things. For us this helps some, but not the magic pill. Good luck!

I have a friend whose daughter swears by it. Her doctor doesn't even use the needles. Must be an acupressure thing? I've not gone to her as she is too far out of town, but I am looking into a local one for my daughters. She said it does keep the autonomic system more calm. That's what we are looking for.

Thanks, Jan, we'll try that!

Your poor toe!! You have my sympathies, that hurts! I watched my daughter this morning drop about 3 things before we even had breakfast. Hands just weren't cooperating. Some days are better than others. I've really noticed that.

My daughter is on Florinef and her doctor just split up her dose (0.1 at breakfast, 0.1 at dinner) to see if it was causing her splitting headaches. Don't think it's helping yet. But, I'm curious, she has such a hard time getting up in the morning. Can't get up too early or move too fast otherwise she will get lightheaded, tachycardic, and it causes her vertigo to get worse. I've wondered if she took her dose before she was planning on getting up, would it help these symptoms? I think during the night when her blood isn't pumping like during the day, so it takes the blood a long time to get to her head to prevent these symptoms. It's interesting, though, stellaluna, that it helped you sleep. My daughter gets really tachy at night too.

I brought this up to our primary care doc today, in fact. Had to take the oldest in again for what we thought was a yeast infection. This time the urine sample came out positive for UTI. So here we go again. At least it showed something. I threw the epileptic vertigo out there to him and he thought it was a longshot, but that he would think about the EEG. He did comment, the girls have never had an EEG?? I said, nope. I told him that we had done everything else, but that. He said, hmmm, I'll think about that. What do they do during an EEG?