DizzyGirls

Thank you all! My daughter does have mast cell issues, tests always come back high, even on antihistamines. Could be why her body likes Benadryl so much! My daughter told me (as we've had many discussions lately) that she had a lot of weakness in one of her arms before we left to drive down to our appointment at Stanford last November. It was a long drive for her, 3 hours, especially since her vertigo had been bad (as always happens when she is stressed). She also had it recently when she was especially bad a couple of weeks ago and thought she wouldn't be able to make an appearance at a graduation party for a friend. She did make it to that, but, looking back, not sure it was the smartest idea to go. Took a lot of medication to get there and it really set her back. Her vertigo has been extremely bad the last few weeks and it's on the heels of that, that the tremors began. Think it's looking more and more like this may be POTS related after all. Interestingly enough, when we went to the chiropractor yesterday, her hands and legs did start trembling so she could see what was going on. The chiro pushed gently on a particular spot in the thoracic area of her back and her hand stopped shaking. Just like that! Her leg started trembling, so she very gently pulled on her head to stretch her spine and it stopped moving. She put my daughter back together and it was better last night. Not sure what we'd do without our chiropractor. She's been amazing through all of this! I've also been in contact with her neurologist from Stanford and they are ordering a cortisol test and a thyroid test for her, too. Will have to get that done next week, due to the holiday. Thank you all! You've made me relax a little. Have a happy 4th of July!!

I think that no matter what the labs say, if you are being helped by something, I would stick with it (provided it doesn't clash with other medications). I'm a firm believer in Zyrtec, too. It makes me so sleepy, but if I skip more than a day, I have trouble breathing and I start to get vertigo. I know that sometimes the tests will show negative, when in actually, you do have overactive mast cells. There is always an error percent in labs. Sure wish they would have processed the tryptase level correctly. That was the only lab that came back high on my daughter's. All the others were normal. Did you go off of all of your antihistamines 48 hours before the test?

How about your local Family Services and getting on Medi-Cal/Medicaid? Maybe apply for welfare and they might be able to help with housing, too. Also, you might make sure you eat salty snacks (pretzels, CheezNips are salty and cheap), and drink a lot of water. If you can stand a little salt in it, that would help. Good luck to you!

My poor daughter is just going through it. Last Friday she developed involuntary muscle spasms that started with her shoulder, then worked down her arm into her hand. It flip flopped, fingers moved uncontrollably like playing "air piano", it moved into her other arm, starting in the upper part, then working down to her hands. Her hands flip flopped, fingers moved, etc. It then moved to her legs, one and then the other. Finally, it crept up to her face. She's been working really hard to keep her head still lately as her vertigo has been bad, so this was not good. It lasted for about 20 minutes until the phenergan I had just given her right before all this started (hadn't had time to work to cause this) kicked in. I also had put ice packs behind her neck, shoulders, under her knees, etc. It seemed to calm them. The reason I chose ice was that she has had an issue with her neck and some severe inflammation and thought it would help bring it down. This was very late, so she finally was able to go to bed and slept all night. She woke up the next morning and was still a little jittery and very, very sore. I texted her primary doctor and he called right away. He thought it was a mix of the phenergan with one of her other meds. So he told her to take Benedryl. Worked pretty good, kept an eye (via phone calls) all day Saturday. By Sunday morning when I called to check in, she had begun spasming again. He said that wouldn't be the meds because she hadn't taken anything. I told him that there was an area in her neck that she could feel which nerve was triggering everything. Why it wasn't isolated to just that nerve, I don't know. But we had a neck x-ray taken yesterday, an appt. with her chiropractor (she's extremely knowledgeable), and her primary doctor on Friday. Anybody ever had this happen? Thoughts?

Hi Kaitlyn! Thanks for the suggestions! She's tried topamax and it didn't help, she is on diazepam and that does help. Tremendously! I'm with you, would rather she didn't take it, but that doesn't seem to be possible right now. Not until someone finds out the cause of the vertigo. The phenergan does work well in those acute cases. She was taking small amounts of it every night, but there was a conflict with her Reglan (help her stomach empty) and was told by her PCP that she shouldn't be taking them together. So, there goes that drug. He said to take Benadryl instead. We are trying that. I learned a while back from watching some paramedics treating my youngest daughter, that you can take a heck of a lot of Benadryl before it's "too much". Wished we could have the Phenergan back, but we'll have to try to do without. Thanks for your support and the laugh! Guess it didn't like your word !

Kaitlyn - yes, I have one of those capsule makers and made a bunch with some empty capsules that I keep on hand. Tried filling them with just regular salt, too. The regular salt ones upset her stomach the worst. I was surprised. I often put meds that I don't want to digest in her stomach in a capsule so that they'll digest in her intestines. Thanks for the suggestion!

Katie - That is so miserable. My mom has dealt with these symptoms for a long time. It's her primary, debilitating symptom. Although her stomach is a close second. She takes a lot of neurontin for hers and some other heavy stuff. It's the only thing that takes the edge off, and even then, it's not always effective. My daughter is closing in on the same thing with the migraines/pain at the base of her skull and up to her eyes/ears/jaw. We also have been dealing with what we now think are muscle spasms that are impinging nerves. It seems to be coming from an area high in her neck. She's got EDS, also, and is very loose in her neck. She's also really small boned and so she's very fragile. Her body started going into spasms this weekend (of course). It started with her shoulders, then went to her arms and hands, then to her legs and feet. Lastly, it traveled to her face. It was really scary and we didn't know what was causing them. I have her PCP's cell number, so I called him and he thought it was an extra pyramidal effect from too much medicine. I looked it up, seemed to fit. He told her to take 50 mg of Benadryl every 6-8 hours. It worked some, but then it kept coming back. Called him early this afternoon (how many doctors will help you on a Sunday afternoon?) and he said that it couldn't be the medicine. Not after this length of time. I told him she could feel it start from her neck. I already knew that she had a lot of inflammation in her neck, and he used to be an orthopedic surgeon. So, he said warm compresses and prescribed a muscle relaxer. The warm compresses helped immediately. I couldn't believe it. Her body just all of a sudden stopped shaking. The muscle relaxer with a Benedryl seems to be relaxing them some. But, until we get her neck taken care of, I think this is going to be a problem. I hope your situation doesn't turn into ours. If it does, heat up a warm rice sock, make sure it is really warm (don't burn your skin, though). Hope you get some help, soon!

Tried it recently for my daughter. Made her stomach really grumbly, so we are back to trying Thermotabs.

Hi all! So we dropped the midodrine. Seemed to be the culprit of the pounding headaches in the morning about an hour after she took her medicine. Also, went to our chiropractor today and she noticed that her neck, at the base of her skull, was "squishy". Huh?? She called it "snowball crepitus". I knew the term "crepitus" from my youngest daughter's experience with a "pneumomediastinum" (another story!) a couple of years ago. She said that there was so much inflammation at the cervical area of her neck that it was kind of crunchy and squishy. She said that it could be a big contributing factor in her vertigo issues as of late. We had explained to her about our "all-night" ER visit for her vertigo and migraines. So, Katie, I think you hit the nail on the head. I had started to read your article that you had posted, but was interrupted with dinner. I did read enough of it to figure out that my mom fits very nicely into the occipital neuralgia box. I, too, had stumbled across some very convincing information regarding cervical vertigo a number of months ago. I think with the information from our chiropractor, it would make logical sense. I never have thought that it was coming solely from her inner ear. Just didn't act like it. She's had MRIs, CTs, EEGs, EKG, TTTs (talk about making her vertigo mad!) . We haven't had vestibular testing done because you have to be off of meds that keep her vertigo calm. She's just too sick to do that and not in any shape to go through those grueling tests. Kaitlyn, yes, vertigo is one of the most debilitating symptoms that they have. If the vertigo could be kept under control, they could eliminate about half of their meds. My mom has actually had to go by ambulance to the ER because her vertigo gets so bad. Both my girls have it 24/7. Most of the time it doesn't send them to the hospital, but there are those days that it does. It's a scary thing. Amalia01, I do think she might have mild hyperPOTS. Could be why she reacts to some meds like she does.

No, they didn't, but she had one done a couple of months ago (referred by her neurologist) and it came back ok. Her vertigo is just off the charts right now. She keeps thinking things are falling over because, to her eyes, everything is moving. Once the meds from the ER wore off, we are heading right back where we started. I just need for somebody to stop her from spinning.

Thank you all for your support!! It is true that most of us do not respond in a textbook manner to most things. We are the rare 1% of just about anything. My husband and I had to take my daughter in to the ER last night because the vertigo got so bad that her body sort of freezes in one place. I think the muscles do this to hold the body still. One minute we were taking pictures of the beautiful night sky and a few minutes later she needed to go to the ER. We didn't get home until 6:30 this morning. When people talk about pulling an "all-nighter", I don't think this is what they meant! They gave her a migraine cocktail of valium, reglan, magnesium sulfate and some good ol' saline. She was out like a light. It was nice to see her peaceful and watch as her eyes were still and not darting around like they do with the vertigo. We are probably going to have to re-evaluate her migraine protocol, also. The amytriptiline may not be helping as much as we thought. She's tried topomax before, too. It didn't help and it made her so lethargic. More so than some of her really heavy duty meds that she takes now. Or maybe it was just the combination of everything. We paid careful attention to how she felt today after she took her midodrine tablet, and within a half an hour her eyes were pounding and head was hurting. Think this is a drug we are going to have to do without. It's funny, because when she was first taking it just once a day, it was actually helping her headaches, not causing them. I think ANCY has a point, sometimes it depends on what the bp and hr are doing as to when you should take this drug. (Btw, I hope you are doing better!) I also agree with those who suggested thyroid testing. The complete, extended version! Also, we do eat pretty healthy and don't really eat too many processed foods because she is lactose intolerant and most foods have some form or the other of milk. Also noticed that prepackaged things that have a lot of ingredients in them always made her stomach upset. We do take a Super B Complex, and about 4-6,000 ius of Vitamin D3. Also probiotics have long been a staple of her supplement regimen and she actually takes 800mg of magnesium a day! I think I'd be up a creek if I took that amount, but she does fine with it. We have a little time to decide on the depo shot, whether we want to continue that or not. We are only a month into this last shot, so she'll have to decide in the next month and a half whether she wants to go off of it or get another one. Thank you all for your help! Any other thoughts or suggestions are always welcome!!!

Katie, The amytriptiline worked really well in the beginning. She was only getting one every couple of weeks, which was great! I'm not even sure if the cause of the migraines is the midodrine or the depo shot, but, she was doing better in the migraine regard before she started the midodrine. This is all so frustrating. Thank you for your input!

Thanks Goodr189! That would be a great next step!

I'm trying to put together all of the symptoms and possibilities of ways that might help my 20-year-old daughter. I've been writing here and there about different things, but I think I need a lot of help in putting it all together. She just keeps getting worse. So here is what's going on: New/worsening symptoms: migraines at least once a day, maybe twice some days. Her aura is vertigo. Two migraines a day leaves her with vertigo that is almost uncontrollable. Rise in temperature - been getting up to 99.6 in the afternoon/evening. Hr was 121 this evening. Stomach - being treated for ulcer, is improving. Possible vulvadynia and interstitial cystitis. What we thought were constant yeast infections, we think is now vulvadynia. She's also losing hair (not huge clumps, just mildly), and is more on edge (I know who wouldn't be, but this is not like her). New medication - midodrine, also her third shot of depo provera I have a couple of thoughts - Does midodrine cause any of these side effects? It was helping her hr, headaches, and her ability to be up and around more. What about the depo provera injections? Has anybody ever had problems with vulvadynia, hairloss, anxiety while being on it? I am just wondering if a combination of these things are happening from her medicines or if they are just new symptoms. She's been on amytriptiline for the migraines and it was helping, a lot! She's up to 40 mg at night and has a cap of 50. I was noticing that with each depo provera injection the anxiety is getting worse, as is the vulvadynia. She's had interstitial cystitis off and on since she was 4, the vulvadynia mildly at times since about 12. The depo shot helps the severity of her periods, but her hormones seem to be very sparatic, which makes her dizzy. Many of these issues also trigger her vertigo (fever, hormones, migraines). I'm throwing my hands up...I don't know what doctor to ask about all this. How do I get them all in a room so that we can just brainstorm until we figure it out?? I can't, so that's why I'm enlisting all of your help! Please, brainstorm away! My daughter and I thank you!

The sound of her voice didn't change, but if she doesn't use her Flovent, the tickle and cough start to come back. I think, though, that we should have worked with a speech therapist, because I think it changed the way that she speaks and is hard to understand sometimes. Hope you are doing better today, hang in there and I'll keep praying!

I am so sorry for your complications and will continue praying! As for the intubation, I don't know about that and EDS, but I do know that my youngest daughter had a bad cough from a virus that got so bad that it did do damage to her vocal cords and voice box. Even though it's been about 9 years ago, maybe longer, but she still has to use her Flovent inhaler. She doesn't have asthma, per se, but there is an inflammatory issue there. But, the only medicine that would calm it was Benadryl. Don't know if your body can tolerate it with all your other meds right now, but had we started it in the beginning of the cough, I think there wouldn't have been any damage as she was only about 8 at the time. The nerves in our bodies and the fragility of our skin makes things like this more complicated.

Thank you for the article, Katie. Talked to my mom this morning and was sharing it with her. Really does explain a lot of her symptoms as well as me and my girls.

Katie, This is almost as encouraging as when I found out that my love for dark chocolate was a good thing! New diet: frozen waffles and dark chocolate. You can't go wrong!

Bigskyfam, My oldest daughter's graduation 2 years go was the turning point in her health. Get lots of rest!

Issie, That would make sense, thank you! She's been having more of that recently. Seems as though symptoms are always changing. I'm always trying to figure out the parasympathetic/sympathetic response and I do forget about the vasovagal aspect of all of this. Thanks!

My daughter had these run through her hematologist. Her serum tryptase came out high even though she's on antihistamines! I would certainly ask your PCP to run them. Mine will run anything that we ask as long as it is within his parameters as a PCP.

So, my daughter is not off of the Florinef yet. The taper was too fast and she ended up having some bad autonomic symptoms, so I kept her at her normal dose. She really does need it. She was passing out, and not only lightheaded, but vertigo too. Also migraines were worse. It has caused everything to plummet, and she's still trying to recover. The midodrine does seem to be helping. Her cardio called and said she could take it three times a day if she needs it. We've had some very strange weather in CA, so that is causing some of her symptoms too. Such a song and dance these drugs are. Still battling the yeast infection, and she's trying to get an ulcer, so her PCP put her on some other meds to clear those symptoms up. I really don't know why my days go so fast!! (note the sarcasm). When her stomach gets better, would like to try that licorice tea. Kaitlyn, I was wondering what you put in your homemade salt capsules - other than salt! Had to take my daughter off of the Thermotabs, think they may have been part of the culprit to the stomach issues as of late. Do they upset your stomach?

Oh, you poor thing. I am so sorry you were grilled like that. People can be so insensitive. Instead of asking what she could do to make your stay more comfortable, she took the form of a drill sergeant and just assumed you could be doing more. Like you haven't tried... I counted how many doctors it takes to manage my daughter's care, I think I stopped at 8. I really don't know how you would deal with someone like that. Personally, I think I would have to stay in a hotel. I know you want to be close to your boyfriend, but this lady's intolerable. It's a shame that a special weekend, a wedding, etc. had to be overshadowed by the boyfriend's mother. You know, I've found that many people have no clue about medical issues, especially complex ones like all of ours. It's tough. Does she ever try to talk about things other than medical? I'm sure you have other interests beyond that of your health condition. Our health conditions to take up a good amount of all of our time - most of us probably go to the doctor at least 85-100 times a year. I know my girls do. We are trying to trim that down this year, but I would actually like to work in possibly seeing a dentist! Something normal that gets pushed by the wayside as we try to make room for specialists, MRIs/CTs, etc. Hang in there and (I know this is cliche) but try not to let her get under your skin. She is just uneducated and doesn't understand how all of this works. Maybe try changing the subject. I'm sure you've done that, but focus on her, maybe, and then maybe she won't focus on you. Sounds like a good one for the "Ask Amy" column in our local newspaper!

This is a little bit of an old thread, but I thought the above people might be interested... My daughters were recently asked to be part of a CDC funded study that is trying to find a link between CFS and chronic illnesses. The doctor that is heading it up is nothing short of brilliant and I'm looking forward to finding out what they are able to uncover. We happened to have whole exome sequencing done several months ago, and will be sending that info to them to study. So glad that this study is well under way. I'll let you know what we find out.

Thanks yogini! I look at all the different soup broth starters at the grocery store. I'm amazed at all the different bases for soups - hot and sour, thai, and of course, the regular stuff. I'll look for the cubes and paste next time I go! So, here's an update on the baking soda experiment. It does reduce acid and add salt, but it makes her tummy more rumbly because it creates carbonation when it hits the acid in her stomach, so we've been off the capsules and just trying to use the different high salt foods to supplement. Also, cardiologist prescribed some midodrine to try. It works some, but it needs to be more than once a day. Hopefully, when he decides to call, we'll get her on maybe three doses a day. That should give her a little bit more quality of life than what she's experiencing right now.