DizzyGirls

@CallieAndToby22- It's all so complicated, isn't it!? Both of my daughters were diagnosed with EDS and POTS by a neurologist at Stanford's Autonomic Clinic. He's sort of the EDS guru of the West. They did the whole tilt table thing and we got their diagnosis and testing done in one day. Upkeep is done by their local doctors. We were fortunate to have a POTS cardiologist among our local crew! He's a godsend! You don't have to go to a big University clinic, though, if you are lucky enough to have a doctor that is knowledgeable within your local area. (Neurologist, geneticist, or PCP (if you've got a good one!)). Have you tried midodrine? My daughter can't actually take that one, but some people can, and if you can't take the florinef, maybe this would help. My daughter has no veins either! She warns anyone who tries to take blood. She knows which vein actually does produce blood and how to get it, the fact that they pop and roll, and that it's always best to warm her veins before! She also tries to go well-hydrated, a huge help! We've had a couple of cocky ones try to get it their way, but never works. My daughter can't take salt tablets anymore. She just sticks to smartwater and variety of other things throughout the day. Usually she drinks around 3-1/2 to 4 liters a day.

@Pistol- Oh, that's not good. I'm so sorry you are feeling so poorly! It's miserable! Yes, both of my girls get that way when they are worse. Weakness usually comes with a bad flare and typically it's in the wintertime. For my oldest, we just found out that she's low in ferritin and just started receiving iron infusions. So, hoping that is the culprit this time for her weakness and lightheadedness. Have you had your blood checked recently? This was a routine appointment for my daughter and definitely were surprised with her blood levels. I have to remind myself that everything isn't always POTS...usually, but not always. I hope you get to feeling better soon!!! @toomanyproblems- I couldn't help but think of my youngest daughter as you were describing how your legs and arms act, being heavy and it getting worse as the day goes on. My daughter had these exact symptoms (arms were always better than her legs, too), only they got severe and by the end of the day her legs would buckle and she would fall....sometimes 30 times from afternoon until she went to bed! Did quite a bit of research and discovered that she has Dopa Responsive Dystonia. It's rare (of course!) and is treated with Sinemet (carbidopa/levodopa) in very low doses. It's the same med that is used to treat Parkinson's but in huge doses (you don't want that!). We have a very receptive neurologist who, when I brought a medical journal article in by Dr. Claude Hamonet, he agreed that she should give the Sinemet a try. It was like night and day. By the second dose, she wasn't falling at all. He saw her in-office shortly after starting it and paraded her around to all of the nurses and doctors and showed them how well she walked, like a fashion runway model! It was just heartwarming!

Just wondering about Resonance Frequency Breathing..... My daughter's therapist has her doing this 11-second resonance frequency breathing to help with her dysautonomia and anxiety. It's making her anxiety worse, not better....... anybody have that happen?

I'm sorry I'm a little slow at responding to everyone's helpful suggestions!! My daughter had her first iron infusion this past Friday, so she's even worse than when I wrote this post! Definitely think she needs a couple of bags of saline at her next infusion. That's a must! Anyway, she drinks about 12-16 oz of smartwater before she even attempts to get out of bed and I have switched to giving her Florinef early with her dose of meds that she takes before she gets out of bed. This has been helping some. I remember now, that when she tried taking iron before that it really gave her an extreme POTS reaction. She does eat very small meals and actually had to go Paleo because her body is missing the enzymes that it takes to digest anything that is a carb or has sucrose in it (she does have enzyme supplements to enable to eat limited amounts). Oddly enough, she does well with high fructose corn syrup because it's a single chain sugar, sucrose being a polysaccharide. That's another story, tho! She's also got gastroparesis that we are always working around, as it seems to kind of come and go. Basically, she is a mess, but hoping once she gets her ferritin leveled out maybe she'll do better. EDS and Dysautonomia.....the gift that keeps on giving! Thanks all for your help!!!

My daughter was diagnosed with chilblains when she was about 12. At the time, she was dealing with viral onset gastroparesis and we think that her malnutrition was the cause. She was diagnosed by a dermatologist who found it odd that she would have a condition such as this living at sea level in California! However, EDS, Dysautonomia, etc. is not a chooser of your region. The oddest of things happen with these conditions! She didn't do anything for hers. She had a feeding tube for about 3 months, got her nutrition levels back up and the whole chilblains thing with the bumps, etc. just went away. You should, however, see a dermatologist for them, just to make sure that you are correct. There are bumps called "Gottran's Papules" and they are usually associated with more serious conditions. That's what my daughter's PCP thought the bumps were, but the dermatologist he sent her to biopsied one and said it wasn't, which was good.

@CallieAndToby22I'm sorry that you are going through this, too! In between when I posted this and now, my daughter had an appt with her hematologist. It was just a 6 month check-in, but I'm so glad she went! It turns out that her ferritin level is low and most likely explains why she's been passing out so much! It's really hard with POTS to determine what is a POTS thing and what might actually be something else. I always remind myself, this is why we keep a hematologist in our back pocket! She's a super doctor and it's been great to keep her on with our "doctor crew"! Have you had any labs to check your blood levels recently? Our situation was a reminder that it's good to keep up on labs. You never know what's going to tank!

My daughter has been passing out after she eats breakfast. This is a new thing, but, by no means the only thing she's got going on (does anyone ever have just one thing at a time???!). That being said, I'm sure this happens to many of you! So, what do you do when this happens to you? My guess is most likely post prandial (sp?) hypotension, but would be interested if anyone else has a different diagnosis for theirs! Thanks all!

Wow! This is so interesting and fits right in with my oldest. Ever since she had to stop taking Motrin, her pain has been off the charts. Had an ultrasound show some mild distention and swelling of her left kidney (so far no Nutcracker syndrome). I think her issues are inflammatory. She's been on Plaquenil off and on for the past few years, but only at 200 mg a day. Wonder if that's a high enough dose to do anything? Just a thought.... My mom has EDS, Lupus, Dermatomyositis, and Sjogren's, so AI runs in the family and my daughter is a carbon copy of her. Would love to hear updates on this @Pistol!

@adejuliannie- So both girls (24 and 22) take Nadolol. It's one that doesn't mess with their bp too much, but still lowers their heart rates. I'm having a real brain fade at the moment, but there is a type of syncope where, during the passing out process, tremors and seizure-like symptoms occur, which is what I figured out my oldest was doing. When her bp gets too low, she starts tremoring. Sometimes she'll stay in that phase, but sometimes she'll pass out. I tilt her back, lift her legs, and she comes back. When this happens, she takes a Florinef. That boosts her bp and makes her not so lightheaded. Metoprolol was a good drug for my girls, but it did nothing for their tremoring. Sounds like you need a good cardiologist who's familiar with POTS. Feel free to message me if you need more details. I hope you feel better soon!

@Viktor- My daughter takes Nadolol. @Delta - Rain and hail do the same thing to my daughter! It just about sends her through the roof. She is significantly better than a few weeks ago. It's finally starting to calm down, but she still does have to take precautions so as not to trigger it again. Always something, isnt' it!?

My daughter doesn't have hyper-POTS (that we know of, anyway!), but she's been having a really hard time with intense things. She doesn't like graphic things of that nature, either, but she's also bothered by intense music, too much commotion (too many people talking or noises happening all at once) and sound. Sound is a big trigger! They all do the same thing and that is trigger her sympathetic nervous system, which leads to all of the symptoms you are referring to. We have been trying diligently since September to get it to calm down. She's doing a lot better, but we have been making sure that she is not triggered (everyone has their own triggers) so that her SNS has a chance to settle. As @POTSius mentioned, beta blockers are helpful. My daughter has to take a non-selective beta blocker, versus the cardiac selective ones. She needs it to cross the blood-brain barrier. Also, if you have any meds that make you more relaxed, those can help, too, if you are having a particularly bad day. Hope you can get things to settle down soon!

@Liz Mack - Have you ever heard of Superior Canal Dehiscence? It's an opening or a thinning of the semicircular canal in the inner ear. You might want to look it up. My daughters both have vertigo, POTS, EDS, and the list goes on. My youngest was evaluated for it (close up CT), but doesn't have it. Their problems are POTS and central nervous system related. Another thought would be Eagle's Syndrome. Please do some research on both of those, as you don't want to miss something, blame it on POTS, and live in misery. Do you check your blood pressure and heart rate frequently? Make sure you have an accurate blood pressure machine. It's been our most valuable diagnostic tool! I hope you get to feeling better soon!

Both of my daughters had seizure-like symptoms (involuntary jerking, temors, absence-like seizures) when their propranolol stopped working and they were both switched to Metoprolol (a cardiac blocker). The Metoprolol worked great for their tachycardia, but seizure-like symptoms and tremors popped up. Through a bunch of research and some very frustrating doctor visits with doctors that should have, but didn't know what they were doing, I figured out that they needed a non-selective beta blocker. It crosses the blood-brain barrier and they need that. Their Sympathetic Nervous System was taking charge and not settling down. My youngest has been having a huge upswing in that right now. She had some stressful things going on and had a panic attack, which, in turn, created an overreaction by her SNS. You could see it in her eyes. It caused a lot of tremors, she can't speak when this is happening, and also has dystonia (which doesn't help things). She has a big problem with hyperacussis, as well, and that is a huge trigger for tremors and seizure-like activity. So, definitely a Dysautonomia thing.

Thank you both!! Maybe we'll give an Omron a try. It's easy just to assume they are all accurate, but wanted to ask people who use them all the time to see what your opinions were.

I'm searching for a new blood pressure machine, as ours has died. It served us well, but, time for a new one! We need one that is really accurate, especially with low blood pressure. Borrowed an Omron from my aunt and my daughter swears up and down that it reads too high. When we CAN get our old one to actually work, it will show a much lower reading, one that coincides with the way she is feeling. Our old one was an AandD. Also, they have small arms and would like one with a smaller cuff (found a few, but not sure on accuracy). Anybody have any favorites?

What about IVIG? Has your doctor mentioned Rituxen infusions if your autoimmune issues are not well controlled? We are about to go down the Allergy and Immunology path as my daughter has MCAS and she's just having a real tough time. Anaphylactic reactions to several things as of late. Has anyone checked your Tryptase levels? My daughter never shows anything on allergy testing, Igg, Ige, etc. or the 24 hour urine hystamine catch. BUT, she does have high tryptase levels (17 was her highest and that was on antihistamines!) It's a simple blood test. She has a hematologist who did a bone marrow biopsy just to make certain she did not have mastocytosis, but she didn't. That was a couple of years ago and he said her mast cells are just far too active, but didn't know enough about MCAS to really treat her on a regular basis (he's mostly oncology).

@Sue1234 - my mom's pituitary doesn't work either. Fortunately, her doctor recognized it, but there wasn't anything she could do to help her. I think my daughter might need a 24 hour cortisol test (she hates those), and maybe an ACTH test. Her rheumatologist is also running some labs, too, just to see where those numbers are at. So sorry your doctor won't do anything. So frustrating!

Yes, I would love for them to take her levels at 8, 12, 4, 8, midnight, and 2 am also! I do think hers would be "off". My mom's pituitary doesn't work well at all. Her ACTH test came back proving that. I do think that dysautonomia people would probably have very similiarities, too! This is all very interesting. Her hematologist sent a referral for her to see an endocrinologist that she likes. Hopefully he'll be better than the last one my daughter saw. She was awful. I think there might be a correlation to her cortisol and her pain levels. Maybe even her norepinephrine levels (is that the same thing?). She's never had any of these tested and I'm just wondering if it would be beneficial. I do think though, that due to her pain and sleep cycles, it might throw some of the testing off, and that can't be helped. Hmmm, always something.

Does anyone keep track of their cortisol levels on a regular basis, maybe a couple of times a year? My daughter just had one and it was 2.1. Her doctor did a random one to see what it was at the moment (it was noon). I know your cortisol levels shouldn't be 2.1 at noon. Maybe later in the night.... She's been very tired and it's been hard to balance her bp and hr. Any thoughts?

Thank you, @Pistol!!! It was a long time coming!! So thankful for our cardiologist!! @DADofPotsSon - I have to say, tho, that i think we are having trouble with the nadolol now. Not in controlling the seizures, for which it works just fine, but in controlling both of their tachycardia. It's been a real balancing act with the florinef and nadolol lately. We had this problem with propranolol, too. It just stopped for the tachycardia.

Both of my daughters began having seizure-like symptoms after having to switch beta blockers. The beta blocker that they switched to was metoprolol, a cardiac blocker. Worked great for their tachycardia, but both started having many of the symptoms you all are describing after switching. My oldest was in an inpatient EEG unit for monitoring and had several of these episodes, but they never checked her bp when it was happening. She had a pulse thing on her finger, and it didn't show much, but I told them she has POTS, to no avail. So that night, I wrote to my local FB EDS group and put out the info. A link someone had provided gave me the thought to check her beta blocker. The difference in the previous beta blocker and the new one was that it was just a selective cardiac blocker, not a non-selective blocker. The non-selective crosses the blood brain barrier and evidently was preventing the "seizures" from happening. Sent a message to her cardiologist and asked him to do some homework on a non-selective beta blocker that wouldn't lower her bp too much. He chose Nadolol, and both girls' symptoms have either greatly reduced or gone away. @Nin - I am always amazed at the number of doctors that I meet on a regular basis that don't know a hill of beans about POTS. Baffling!

Hi @Charlotte1 - I've been away for a few weeks and just saw your question. So sorry I've been slow! Yes, both of my daughters have a diagnosis of EDS from Dr. Jaradeh at Stanford's Autonomic Clinic. That was 2015. A lot has happened in the past few weeks, let alone past few months. Found out that my oldest, the one with the IIH, has a tethered spinal cord (again). We were wondering if she was going to have to get another lumbar puncture, but neurosurgeon ordered complete spinal MRI and found the tethered cord. The reason for the constant migraines. To answer your question about lumbar punctures, the doctor/specialist just has to order it just as he would an MRI or the like. I hope you are doing better!

@bombsh3ll Yes, she did faint post op. Oh boy, did she ever! Scroll up to my post on this thread on August 23rd, I told the story. The fusion was ok. She's even been in a car accident since, without her brace! That was soooo scary and really set her back. I wish you all the best and hope that you can get your symptoms figured out. It's really hard. Not only does my daughter still deal with the after-effects of her surgery and vertigo, she's developed kidney stones! If it's not one thing, it's another!

@bombsh3ll- Just remembered this... one of my daughter's neurosurgeons hand picked the anesthesiology team because of her POTS. I'm sure you've tried Florinef and Midodrine... they don't help you? We asked our cardiologist about my daughter's bp, as her heart rate seems to be more under control. He said that controlling the heart rate is much easier than controlling the bp. You can bring bp up or bring it down, but the stability part is what is frustrating, he said.

You have been a real encouragement to me over these past several years that I have been on here! I am so glad you made it through this and that you had someone to stand up for you and your husband while you were trying to do something helpful. How things backfire! My mom and dad had a similar, albeit not quite as severe, issue with caring for an elderly family member and then after the death it just escalated. It's horrible! But you made it!! You GO GIRL!!!