DizzyGirls

Just a thought....when my daughter's heart rate gets lower, she feels really, really lightheaded. If her heart rate was down to 60, she'd have passed out! She is actually most comfortable with a heart rate of about 85-88. She wore a Zio monitor patch for 12 days a few years ago and her cardiologist at the time said it was just normal for her. When doctors try to lower it, she gets really lightheaded.

Hi dancer! I think it's too early to tell on the Aimovig, but we just received her second injection the other day, so we'll see. I think they said that you might be able to see a difference after about 2-3 months. Some people, after 1 month. I know right now my daughter is dealing with a boatload of vertigo. We just can't seem to get it settled down. Finally have her beta blocker figured out, so that's good. She was put on the short acting metoprolol and it seems to be working well. Still working on the timing of her evening dose, though. Sometimes her vertigo seems to correlate with her heart rate, so I bought her a Fitbit so that we can track it 24 hours a day and see if there is any correlation. I hope you find something to help your migraines! They can be so debilitating.

My daughter has just been put on the Aimovig injections. They are once a month and takes a couple of injections before you notice any difference. They are new.

@yogini- She's been to quite a few ENTs and they never know what to do with her. I won't let them do some of the testing because, typically, those tests are done to provoke vertigo in order to see if they can tell what side is worse, etc. She always has nystagmus (which her PCP can see). She's tried the Epley maneuver, and all the other related ones, but they make her pass out. That's not helpful! It's definitely true vertigo. Sometimes she has POTS dizziness, but she's usually very good and differentiating between the two. @Gerbera- That's interesting! I think it probably has a lot to do with what is actually the underlying cause of my daughter's vertigo. I have two daughters that have unrelenting vertigo 24/7. Both came on around puberty and it also runs in my side of the family. Mostly we manage it to a degree and they both respond to either lorazepam or diazepam to control it. There are a lot of triggers that make it worse. It's definitely a tightrope walk, that's for sure. I have a hunch that it is autonomically mediated. I know what you mean about the meds. A lot do say "causes dizziness or vertigo" and those are the very ones that are used to treat it, and they work. Go figure!! @Pistol- Her strange afternoon nausea seems to be settling some. Thanks for asking! She had her trigger point injections last Monday and it seemed to help some of the strange things that were happening. The only thing that is hanging on are these muscle spasms (from her multiple spinal fusion) that are closing off her airways, her stomach, her ability to swallow and speak. Had to go to ER the other day because she couldn't breathe AND had really bad vertigo. He said it was just muscle spasms. Gave her some good meds, let her sleep some, and sent us on our way. It worked, so now we are trying melatonin to help with her muscle spasms. It makes you sleepy, but in doing so it calms her body and the spasms down. Oddly enough, it's helping. Not a cure all. That and a good heating pad! I think the reason she can function on the knock out meds, is that she has MCAD, too and has always needed a lot of antihistamines to keep things in check, or she itches terribly and gets hives. So overwhelming, isn't it!? Thanks for all of your help!

Hi StayatHomeMom and Pistol - She takes meclizine about 4 times a day. Used to, that was all she needed until 2014 and she had a busy year (graduation, trying to go to college, etc.) and it just took off. That's when the benzos, ativan first, then switched to diazepam. StayAtHomeMom, you might have a thought.... dramamine is slightly different than meclizine. Meclizine is, well, meclizine, and dramamine is diphenhydrinate (a cousin to benedryl). We used to use benedryl in the early stages of her vertigo, when she was 12, but it got to where it wasn't quite right. What's weird is that several neurologists have commented on using a benzo for vertigo and that they had never heard of such a thing. Her PCP was the one that first put her on it, and her chiropractor confirmed the other day that a benzo or benedryl are two of the top meds for vertigo (along with meclizine, dramamine, and phenergan). I would love to get her off the benzo, because it's really sedating and there seems to be a universal dislike for the med all of a sudden and I'm getting really frustrated at trying to maneuver around the medical field to get her prescription. With dysautonomia, she has problems with sensory overload (most likely the trigger for the vertigo) and I'm guessing that's why the diazepam works well. Also, with the change of seasons, it is a particularly hard time for her.

As you all know, my daughter has had a real hard time these last few years. She has battled vertigo for 10 years now, the anniversary of the beginning of it just a couple of weeks ago. Her pain doctor, who prescribes her diazepam, is backing her off of it because he doesn't like her taking it. It has been the only thing that has controlled her vertigo the last couple of years, in addition to her promethazine. Does anyone have any ideas of a good substitute that would control vertigo other than benzos. She has really, really been struggling with it the past few weeks and she's scared to death. She had to go to the ER a few days ago because of it.

Thank you!! She's now having vertigo spells at random times and her arms feel real heavy, too. We were going to attempt a picnic with some friends tomorrow for a short bit, but now I'm not so sure. Going to look into the Garmin and Fitbit right now. Thanks!!

Well, here's where were at. Doing good on metoprolol, just trying to keep that at a consistent time every day. Had a little bit of tachy last night, but took her melatonin and she was ok. Going to get a real PulseOx thingy today, just in case my phone isn't the most accurate. Was trying to look up the ratings on them last night, but I fell asleep! Probably not too much difference in them I would guess. I do think there's probably a genetic link between her autoimmune issues, and maybe even her EDS. I know that if you've got one anomaly, you most likely have more. She's been tested for hemachromatosis, and doesn't have that. Fortunately, a few years ago, her hematologist was checking for mastocytosis via a bone marrow biopsy because her tryptase levels were high. No mast cells in the bone marrow, that's good, so he said MCAS. An incidental finding was that she had no stored iron in her bone marrow. So, for now we are glad she is on the Plaquenil for her autoimmune issues. It will protect her organs. We'll keep watching the nausea/vertigo that happens during the afternoon. Considering getting her a Fitbit. Might be a good way to record everything.

Sounds like it could be a muscle spasm. My daughter has dystonia (dopa responsive) and her jaw, mouth, tongue get real stiff and sore sometimes. It's hard to understand her speech sometimes due to the spasms/stiffness or fatigue. Just a thought.

You mentioned plaquenil....my mom gets a red rash like that across her chest, neck and then around her upper back/neck. It was biopsied and she was diagnosed with dermatomyositis. It was based on the lab results as well as clinical. It's an autoimmune disease, she has lupus, as well.

I love these brainstorming sessions! mehganb81 - beef liver capsules, certainly worth looking into! Maybe Vitacost? My dad always says he would cook her up some liver and onions! Yuck, I said!!! Stayathomemom - An iron fish! That's good! I'll have to look into that. You know, you just don't always feel like eating those foods that are high in iron. This would solve that problem! Ironically, my father-in-law had hemochromatosis. Just the opposite of anemia. Pistol - Liquid iron - sounds like I really need to send in an order to Vitacost! I like liquids sometimes, because you can fine tune the doses better. A lot of times, she can only handle small doses at once. She's really sensitive. Also, your lightbulb moment! I love it! Gastroparesis definitely is something we were looking in to, but her neuro-GI wanted her off of her pain meds before she did the motility study. I kind of think we don't really need the study, as she has had slow motility since she was born. It was her very first symptom, and we didn't need a study to figure that one out. Kim - You know, she hasn't had a PFT. I had one a couple of years ago and it was a bit wonky, but it's about the only test she hasn't had yet. I was actually just thinking about a pulmonologist today. They HAVE figure out that she does have an autoimmune issue going on. Her ANA was positive and the titer was 1:160. For her, that's high. Her C4 is low, too. She was just diagnosed with Hashimoto's, but her rheumy is wondering about rheumatoid arthritis after looking at her painful swollen knuckles the last time we were in. I'm wondering about RA, too, even though her RA test was negative, that doesn't always mean a hill of beans to her body though. She will feel symptoms far before they show up on the labs. The rheumy did give her the option of starting on Plaquenil just in case it might slow the progress of whatever was going on. She jumped at the opportunity. I've always thought she had lupus. She's had various indicators of it throughout her life. My mom has lupus. I know that sometimes people that have Hashimoto's and RA have Lupus. Well, it looks like I've got some research to do here! For starters, I've started her on a multi-vitamin that has some iron in it. It's something. I'm going to check Vitacost tomorrow and see what they have in the form of liquid iron as well as the beef liver capsules. I've also been wondering about oxygen therapy, but Kim, you're right, if the mechanism is broken, that probably won't help. Worth looking in to. Might get her an appointment with my pulmonologist and maybe contact her hematologist (been a while since we've seen her) and see if she can run some more detailed labs. Seems as it's always something. Poor thing, I just wish she could rest without a pain attack or this horrible nausea. She just needs a break. Thank you all for your help! There is nothing more valuable than a collaboration of people who've been there and done that!!!

Thanks ladies! I'll check into that. I was texting ANCY the other day and she mentioned the same thing. Even though my daughter's blood levels are just a little low, it would stand to reason, by past experience, that they might be a little more severe than the labs are indicating. Often her body reacts to things way before they show up in labs. Think that's why things get missed sometimes, the labs don't seem severe enough, so they get pushed to the side. My other daughter and I just had a brainstorming session on high iron foods! Unfortunately, my oldest daughter can't take the iron tablets. She had taken iron tablets several years ago and it was the first time she had POTS symptoms. So, we are trying with a multi-vitamin with iron (lower dose) and food. Hopefully it will be enough! Thanks for the help!

Here's an update on my daughter's symptoms....She has started on the metoprolol and it's been doing good. Some of her symptoms, like the passing out and the more severe adrenaline surges, have subsided some. Yeah! Buuuutttt, she passed out this evening and it was really hard to bring her back. Uggghhh! Thought this was better. She's also still having the nausea in the afternoon if she falls asleep. She can barely keep her eyes open at times, and she really needs to sleep, but she can't let herself. Here's a new observation though.....her blood oxygen levels are consistently low. I have this app that came on my phone, Samsung health, and it has a heart rate, oxygen level, and one that combines the two. So, I thought to test her oxygen levels this evening when she had passed out. It was 85%. That's kind of low. It would also explain why she feels overwhelmingly sleepy and dizzy too. I took again a few minutes later and it was still only 90%. I wonder if some oxygen treatments might help. She always says that she feels better when at the hospital and they put the oxygen on her. So, now I need to figure out why the low oxygen levels AND why she's nauseous later in the day. It's starting to creep in to other parts of the day as well. Just another thought, she's slightly anemic, as well. Oh, and the doctor did finally agree to testing her T3 and T4 along with the TSH levels. My dad, who had his thyroid nodule biopsied the same day as my daughter did (way to keep it in the family, huh!) said that he read that they should be testing at least 5 different things when testing thyroid levels to get an accurate reading. This guy was a real waste of time, but I'm going to have her levels tested again and see what they say. Her first endocrinologist said she would treat her if her levels got to 4.5. This other doc said he wouldn't start treating her until they got to 10!!! We won't be going back to him! Well, thanks all! Any thoughts, please throw them in the ring, you just never know!!!

If my daughter takes more than 1-1/2 tabs of Florinef in a day, she gets a really bad headache. When this happens, we take her bp and it's usually much higher than normal. I, myself, wouldn't take Florinef if I had high bp. Seems a bit counterintuitive.

Hi all! Let's see... sometimes she's outside in the sun before this happens, but not always. She always rests sitting up because she has vertigo 24/7 and if she lays flat, she gets dizzy. So, not those. And, no, I haven't measured her blood pressure and/or heart rate when this happens, but, I'm thinking that I should be. We've recently found links with her bp and hr lately and some of her other symptoms. I can't believe I didn't think of that! Her POTS was controlled so well for the last several years and all of a sudden it's all gone to pot! Sorry, pun intended! I'm a little punchy as I've been in traffic for most of the day in SF where she saw a new endocrinologist who we were hoping would offer her some treatment for hypothyroid symptoms. She's got Hashimoto's and she has a ton of symptoms but, because her tests don't come back showing elevated TSH levels, nobody will treat her. Her bladder infections are that way, too. If it's not one of those infections that just hits like a ton of bricks (even though she has some symptoms), she has to wait at least a week for it to show up on labs. One time she waited 2 weeks to go and the doctor said "DO NOT do that again". We explained why. Same thing with her TSH levels. I'm sure she's hypothyroid, but docs won't treat unless it's off the charts. Now, all this being said, she just had a mild episode of the resting and then nausea (this was a little bit more dizziness than normal, but most likely from being in SF traffic for the last 2 hours), so I took her bp and hr. Her bp was fine 102/72, but her heart rate was 101. The other night, after laying on the couch watching TV, it was 114! So, just gave her a propranolol and hope it settles things down. She sees her new cardiologist tomorrow and he is going to switch her beta blocker to metoprolol ER. So, we'll see how this goes! Any other thoughts, and I'm all ears!!

No, no new meds. I thought about that, too. Doesn't seem to be.

No, it's not. She's been having this new symptom every afternoon, as well as a great increase in migraines, and her POTS is gone wacky. She is seeing an endocrinologist tomorrow as a second opinion for her Hashimoto's. Her nodule biopsy came back as just that, a thyroid nodule, no cancer. But, I think her untreated Hashimoto's (previous doctor was taking the "wait and see" approach) has caused this huge upswing in POTS activity. I'm guessing that this could be a reason for the increased migraines and also the afternoon nausea. Just wanted to get other's opinions to see if it is something anyone else has dealt with.

So, a new symptom that my daughter needs your help with! For the past week or two, my daughter has been developing severe nausea and headache when she goes to rest or relax in the late afternoon. This does not happen any other time of the day, only the late afternoon. Has anyone ever had any experience with this??? Soooo strange. Thanks in advance for your help!!!

Have you tried doing the "poor man's tilt table test" when you are feeling bad? You lay down, take your bp/hr, then sit up and take your bp/hr, then maybe 5 minutes later stand and take your bp/hr. Take it a couple of times at, say, 2, 5, 8, minute intervals. See if you heart rate goes up. I would record your bp/hr at each step of this process. And, yes, dysautonomia can cause temperature fluctuations. Most of us have swings in temp at some time or another. Dysautonomia can cause Reynaud's and erythromelalgia, too. Where the blood vessels either contract or relax too much. Good luck on your testing and let us know what they say!!

Thank you all for sharing your experiences. I read them to my daughter and she feels comfortable with giving the metoprolol a try. She's actually really looking forward to it. She thinks she made a connection today with her migraines and her propranolol running out. Ready for something new.

My daughter saw a new cardiologist today, and, lo and behold, we actually liked him. In addition, he actually knew something (quite a lot actually) about POTS. I was amazed at how quick the appointment was, attributing that to the fact that I didn't have to do my POTS 101 with him first! Yeah! He wants to do and echo next week, just to make absolutely sure that there's nothing wrong with her heart. I get that. Assuming that's ok, he suggested possibly switching her from propranolol to metoprolol ER. Her propanolol isn't working very well right now and she's either having adrenaline surges or her bp is bottoming out. It's very undecided at the moment. But, her hr last night, while resting, was 112. That was ON propranolol. Obviously it's not last as long as needs to and it took a bit last night (after her propranolol) to get it to finally calm down. My question is this: has anyone gone from one to the other and what was your experience with it? We are hoping for less fatigue, no stomach upset, and possibly not the weight gain with the metoprolol (it's so hard on her back full of titanium). Annnd, most importantly, better control of her heart rate. Thanks for your input!

A patient of our chiropractor had the HPV shot a few years ago. She was a high school wrestler and was very good. After the HPV vaccine (there are 2, I believe), she developed a ton of neurological problems, tremors, lost the ability to walk, talk, etc. She went from star athlete to a spastic mess. Our chiropractor knew of a natural health lady in the UK (She does phone interviews for people in the US) and somehow got the girl on a special diet/regimen and she has improved dramatically. Whatever the lady in the UK did, helped tremendously. So, that being said, my girls won't be getting the HPV vaccine. I know most might not have a problem with the vaccine, but none of us on this sight are normal, or we wouldn't be here. Just thought I'd share this story. Feel so bad for the young gal, her life will never be the same.

Have you ever asked a neurologist about dystonia? Foot rotating inward can be a sign. My daughter has dopa responsive dystonia. There are many different kinds. But DRD goes along with Ehlers Danlos Syndrome, which my daughter has. Not saying it's dystonia, but might be worth a question to the neuro.

My daughter has been on it for 2 years and has taken 20mg, 3x a day. It helped her tremors quite a bit, especially in the beginning. Hasn't ever seemed to affect her POTS at all.

The BC is a great option. My daughter's OB/GYN was concerned not only with her bad periods, but the anxiety she got with them. She decided it wasn't worth the risk and doesn't make her come off of them for a week. It has helped her POTS soooo much. We homeschooled because the girls were too ill to actually go to school and for us it worked well. Maybe there's a happy medium. Some classes at school and some at home. Would that be possible? Have you ever been looked at for Ehlers Danlos Syndrome or tested for Lupus (the sun rash made me think of that)? Dysautonomia can be found in both of these. I hope you do very well in high school, you sound like a very smart and motivated girl!