DizzyGirls

Thanks gals! This is all very helpful. Even if you don't know what to do, it gives me some ideas. It does definitely seem to run with those who have EDS or think they might (Kim : )!) We are dealing with more issues as we are getting closer to my other daughter's surgery for cervical instability. But, this does really seem to run with fatigue. In the beginning, it seemed to happen with POTS symptoms, syncope, etc. But now, seems to be strictly fatigue. She has no endurance to begin with and when she pushes herself, well, like anything, it makes it worse. WinterSown, she has learned to shop online, A LOT!! At 19, you just can't take that shopping bug out of the girl! Both of my daughters just love Forever21 and it is so much easier to find things online than in their store. I absolutely loathe going to their store, but online, piece of cake. Stores, the music is too loud, their stores are a mess, no organization, and they are really busy. Can you say POTS attack!! There is so much more selection online, too. The only time she goes to warehouse stores like Costco is when we've ordered her new glasses and she had to go pick them out and then have them fitted when they came in. So glad we only have to do that every 2 years!! Didn't think we were going to get past the doorway! All the commotion, merchandise, she just collapsed. She's going to the orthotist tomorrow to see about new braces. We'll see what he says. He's somewhat knowledgeable about EDS as far as the joints, just doesn't understand the dysautonomia part of it. I'll let you know what he says!

Hi all! Thanks for your input!! Another question for you: do you all have Ehlers Danlos? What's happening to you three sounds like the same thing that is happening to my daughter. Kim, you said you are suddenly a rag doll. Yes, that is exactly like her. She does look like a baby giraffe when she tries to walk sometimes. Sometimes she looks a bit like an ostrich because of how she is trying so hard to get her body to move where it's supposed to go. Often this is worse while she is just standing. Momentum seems to be her friend right now. She'll say it's like her bones in her thighs (pardon the brain fade on the anatomy right now!) have to balance on the bones in her lower leg. No muscle strength to hold them together. BuffRockChick and WinterSown, maybe it is neurological in nature. We are a little shy on neurologists right now because the one we were seeing is on the 6th floor and my daughter can't take the elevator up because of her vertigo. So, right now he is out of the question. Her knees can't go up one flight of stairs, let alone 6! Does this happen sporatically in you all or is it progressive. My daughter's seems to be progressive. It just keeps getting worse. In the morning she's not too bad, but the later in the day it gets the worse it is. This also happened in Costco one day. Do you all have Costco (big warehouse store)? Anyway, we got inside the door, fortunately we brought her crutches, but she about crumbled. Her knees went limp and about ripped her arms off trying to fall and hold on to the crutches. Seriously wondering about a wheelchair at times. Thanks for your help!

I am trying to figure out a new problem of my youngest daughter (almost 19). Her knees keep buckling under her and she falls. Maybe as many as 20 times a day. She can walk pretty good in the morning, but by evening, they won't hold her up. She said it feels like her hips are unstable now, too. She's got a brace for each leg to hold her knee caps in place, but when she was fitted for them the orthotist did indicate that these would not hold her up. They were just to keep the knee cap in place. She started this last year. We were at a wedding (lots of stimulation, hot, loud, a lot of people) and when she stood up and went to walk after the ceremony was over, she fell. Not once, but the next three steps she tried to take ended her up on the ground. I have told her at home for a while now, make sure you have your legs with you when you start to walk. I'm not sure if this is Dysautonomia, EDS, some form of ataxia, a spodylesthesis in her lower back, but I needed to start somewhere. So, please let me know if you have leg problems, too! Maybe somehow we can make sense of all this! Thanks!

This sounds so simple, but have you tried Ibuprofen? Just wondering if a few doses of an anti-inflammatory might settle it down. If it does work, might tell you that it was inflammation and then you might have an idea of what you are dealing with. Back to the old process-of-elimination theory!

We do the same thing! And, actually, their old neurologist and cardiologist are using caffeine in a lot of different ways and didn't discount the idea! We started doing the coffee thing (it's the caffeine actually) a few years ago when the girls were allowed to have coffee (gotta love Starbucks!) and discovered that the caffeine helped the vertigo some (in addition to the diazepam or lorazepam). I used to get a lot of migraines and I always treated them with a healty dose of caffeine...vasoconstrictor action. So, we started treating the vertigo the same way. Their vertigo has actually gotten worse in the last couple of years as the rest of their symptoms have increased. Still haven't found the exact cause of it, but my guess is the dysautonomia along with their Ehlers Danlos and cervical/craniocervical instability. A very complex population, those of us with Dysautonomia/POTS, EDS, MCAS. If you don't have any problems with the caffeine increasing your bp or hr too much, why would it be bad for you when all you are experiencing is relief? We actually buy straight caffeine (not coffee) from this place online so that we can add a few drops to things other than coffee or sodas.

My daughters (oldest especially) have had trouble with low grade fevers for some time. My mom, too. My mom has lupus and was just diagnosed with dermatomyositis, she also has EDS. They can make you feel quite unwell at times. Especially since my daughters' temps have always been around 97.6 instead of 98.6. We also think that my oldest could possibly have lupus. Not sure. She comes up with positive ANAs at times with a titer around 1:80, which isn't high.

Hi Craig! Welcome to the forum! Here you will find a whole host of people that will, hopefully, be able to help you find information you are looking for! My daughter has, what I would say, mild MCAS. She has EDS/POTS/MCAS and her tryptase levels at age 12 were 17. At age 17, they were tested again and were still about 15, I think. At that point they did a bone marrow biopsy to check for mastocytosis, but, hurray, it came back with no extra mast cells in her bone marrow. They did conclude, that her mast cells were just a bit overactive. She takes a combination of Benadryl and Zantac to hopefully keep it in check, but, after some blood work (still on her meds) her tryptase came back at 11. So, it's down, just not gone. There is a paper put out by Dr. Afrin that is great! If you search through the old posts, there should be one by Katybug and there is most likely a link to his paper. She has real trouble with MCAS. Even though my daughter's MCAS isn't her main concern, she does have a whole host of other neurological symptoms and will be facing spinal fusion surgery in a couple of weeks. Hope you find some answers here!

Hi Magosh! Welcome to the forum! Well, as you can see by my username, vertigo was/is still one of my girls' most debilitating symptoms. They both developed it by the time they were 12 and 14 (they are almost 19 and 21 now). My oldest's vertigo was triggered by a migraine (vertigo is her aura). The headache left, the vertigo stayed. My youngest, due to a viral cold. The cold left, the vertigo stayed. I think both of theirs is triggered by a combination of autonomic issues and vestibular. Their PCP tried to do the Epley maneuver (similar to Dix-Halpike) on my oldest and she almost passed out. He was shocked that it didn't work, as he said that he had never had it not work. Well, first time for everything I suppose. My youngest we never tried this with. One of their respected doctors that we see quite often also did not recommend the vestibular rehab for them due to their hypermobility of their necks. Thought it might be too taxing on it. They have Ehlers Danlos Syndrome. My oldest has severe cervical instability and is having multiple spinal fusions later this month. Their neurosurgeon suspects she has something called Cervical Medullary Syndrome. One of the biggest symptoms of that is vertigo. They've always had motion sickness, as do I and their grandmother also. We all get migraines too. One daughter takes diazepam and the other takes lorazepam in addition to their meclizine (OTC motion sickness med). Btw, they also cannot watch tv at all as the motion of the picture increases their vertigo. They used to like to do the X-Box Connect games, but, due to the movement of the pictures, they cannot do that either. They can use a cell phone, as the screen is so much smaller, but if someone posts something on Instagram or SnapChat that moves, they turn the phone away so they can't see it. There are lots of triggers for them... crowded places, with a lot of people, noise, movement. Loud music (the bass, especially), the volume. Also, heavy machinery or fans (like the one in our front bathroom!) that make a deep sound that you can feel the sound waves. Things like that trigger their vertigo, too. Anyway, I've gone on too long, but you get the picture. We are still working on it, but I'll post after my daughter's fusion surgery and let everybody know what symptoms she's actually left with. It's anyone's guess as to what the surgery will fix. Hang in there and take a meclizine!

Hi eaudire! You know, it's funny, our neurologist wanted to get a tilt table and the cardiologist that he was working with (the University was trying to set up an Autonomic Clinic) was absolutely adamantly against it. "Absolutely not!" he would say. "It's barbaric!" I'm not sure what HIS reasonings were against it, but my daughters would attest that it's one of the worst tests they have had done most likely for the fact that it makes any POTS symptom you have exponentially worse. My youngest had a panic attack, her bp shot WAY up and it made her so lightheaded, too. My oldest, she almost passed out and lingered in this state for quite some time, all the while they were watching her nystagmus in her eyes because they had never seen anybody where the test triggered such a bad case of vertigo (both girls battle this 24/7). We actually have not gotten the written report for the girls' autonomic testing. I was requesting their records and that was the one thing that I really wanted and it was the one thing that they didn't send! I'll have to request it again. The reason that we wanted to go through with the testing is that we needed a diagnosis. We have too many doctors that we see and to have the only diagnosis be that of what I, as their mom, see doesn't hold much weight. Even though it was me who did hound their PCP to get us to Stanford because I knew they had Ehlers Danlos and POTS. But, to have a Stanford doctor say, without a doubt, that both girls have EDS and POTS, was tremendous. It has come in so handy. I don't know how many times we've been asked "who said they had Ehlers Danlos and POTS??" Like none of them ever believe us, but when you say Dr. Jaradeh from Stanford, they say, "oh, ok". My oldest has a whole host of neurological symptoms (tremors, spasms/dystonia, migraines, headaches, vertigo, numbness, tingling, intense pain (bone, muscle, nerve), poor circulation, too much circulation, lightheadedness) from cervical instability that originated from her EDS. But, a couple of years ago, she was trying to take one college class at our local community college, and on the second day of class, her vision was so blurry and she kept feeling like she was going to pass out, had a horrible "ice pick" headache (think it was a severe migraine). We went to the ER, which at that point, the doctor said that she definitely had a problem that was much bigger than a little community ER department could figure out. I never found out what her hr was that night, but from then on we had used a bp machine to measure bp and hr. Bp was low (low 90's over 60s) and hr was up in the 120s while sitting and would get up to around 156 when she would stand up. Her symptoms were lightheadedness, migraines, headaches, heart palpitations, near syncope. Eventually she was put on Florinef which boosted her bp up a little and made her not pass out in the shower, and then a few months after that, she was put on propranolol (10 mg, once daily) (a beta blocker) which GREATLY helped her hr. She has a normal resting heart rate in the high 90's and feels fine. When they've tried to get it lower, she was having worse headaches. So, we leave it at around 95 (give or take a little). She is going to be having a spinal fusion at the end of July due to ligament laxity and muscle weakness from EDS. They will fuse her from C3 to T3 with a possibility of having to go all the way up to the occiput (back of the skull). She'll have plates, screws, rods, the whole nine yards and be in the hospital for at least a week. I hope this helps! Feel free to ask any more questions when they arise, always here to help!!

Oh, forgot, the brainfog. That's my other daughter. She's got POTS, too! Horrible brainfog! Terrible time concentrating if there is any other commotion in the room. Trouble finding her words. Very smart girl, just takes her brain a moment to kick in and can't focus well.

My daughters had a tilt table test at the Autonomic Clinic at Stanford University, but when we went to see our actual cardiologist, he said he didn't like them. In fact, said they were barbaric and that it wasn't necessary to see if someone had POTS. Well, my girls would agree to the barbaric. We discovered this AFTER we had made the trek to Stanford. You can do a poor man's tilt table test at home. You take your pulse lying down, I think you wait a few minutes (5 maybe?) then sit up, and, finally, while standing (taking your pulse initially, then at 2 minutes, 5 minutes, longer if you like). My oldest daughter (21) didn't used to have POTS, but it sort of came on gradually and then all of a sudden about 2 years ago, she was hit hard. Blurry vision, never passed out, but high heart rate. She's on Propranolol. Helps greatly!

I'll second what KiminOrlando said. My daughter has cervical instability and has a lot of numbness. She also has a lot of other neurological symptoms. Some people have craniocervical and some just cervical (due to her Ehlers Danlos). Took us forever to get a diagnosis, so she got really bad before anyone knew what was going on. (Going to have multiple spinal fusions C3-T3) end of the month). Circulation, too. Some days she's very pale due to lack of circulation, and some days she has so much circulation that it causes a phenomenon called erythromelalgia. It's just the opposite of Reynaud's (which she has, too!). One day when she was very pale and circulation was, let's say, non-existent, she had to have blood drawn. We actually had to leave and come back another day. Couldn't find a vein that would give any blood. That's happened a lot in our journey. My daughter also had multiple trips to the ER (25, but who's counting). Her trips were mostly for the muscle spasms that would get carried away and render her in a dystonic posture, unable to move. Or we went for the unbearable pain that would cause her to black out. (Also blacks out when she moves her head in a certain position. Crimping off her corotids or also the vertebral arteries. Depends on which way she moves). We went so much that they sent us a letter and said they wouldn't see us anymore. Got a copy of her records and a couple of the main doctors that we say were saying she was 'drug seeking'. Do you have any other symptoms that you aren't listing because you don't think they are associated? Just curious.

Yes, indeed! Thought about sending it around to all of our doctors!

Oh, you poor thing!!! That sounds awful!! I do love your sarcasm in it, made me smile. : ) I was wondering, you said that your doctor had prescribed atarax for you. I don't really know anything about that one, but would you be able to take Benedryl tablets in addition to the Atarax? My daughters actually take 75mg roughly every 6 hours. It takes that much to keep the MCAD under control. My oldest, though, has quit saying "I have an itch!" In fact, she takes other forms of antihistamines also. Most doctors would wonder why, but my girls are just medical anomallies and their bodies need that much antihistamine. Do you remember that old medicine Calamine lotion? Think the major ingredient is Benedryl, but was wondering if there was something else in it that might help, too. Used to slather it all over my daughter. I saw the "pending lupus diagnosis" on your post. My mom has lupus and she used to have a bad time with hives, too. Albeit, not quite like this! Feel better soon~

My youngest has issues like that in certain stores. No mast cell issues that we know of.

My daughter found this somewhere and thought it applied ! "A worried mother does better research than the FBI" Hope it made somebody laugh today!

Hi p8d! - Thanks for the update from your neurologist! I was hoping you'd remember to write! Sympathetic overdrive...hmmm. Makes sense to me. I've been trying to rehash the sympathetic and parasympathetic and to refresh my mind all the innerworkings of the two. It's inexhaustible! Makes my head spin trying to keep it all straight. I just know that one seems to not be shutting down when it should be. I'll look into the alpha blockers as well. My oldest is on a beta blocker for her tachycardia and it is working very well for her. She has a lot of the same problems her sister deals with. Each have their own things that bother them more than the other, but both pretty much the same. There has got to be something they can do about all of this or she's going to end up not being able to function in the daytime! Have you ever tried being a nightowl like WinterSown? And the intelligence thing, it's interesting. You are a PhD, wow! I have a high school education, never liked school, always did well, though. If it were up to me, I'd play the piano all day! And, my daughter would draw! This is all very interesting. Keep me posted on your progress and anything else you learn from your neuro! Hi WinterSown! - You know, you said you became a night owl. My youngest prefers to go to bed around 2 a.m. She just likes to sit in her room and sketch, listen to her music so low that most people couldn't even hear it. I think it's because, like you said, nobody is up, there are no movements (except the raccoons out back!), vibrations, stimuli (other than her own self). I think that is why she likes that time of night. She then makes up for the loss of sleep by sleeping in some (gets up around 9) and then takes a nap in the morning. She has never been a high energy kid at all and has always needed a lot of rest. I think I am understanding now why she likes that time of night. I thought she was just being difficult and not wanting to go to bed. But, I think she needs the silence when she is awake. For some reason it doesn't count when she's asleep. It's different. Btw, the video was hilarious!!!

Hi BuffRockChick - You bring up a good point. I'll have to look into that. She is very intelligent. We homeschooled due to their EDS and also what we now know as dysautonomia. She always did several of her subjects at two grade levels above what she should have been. That included all of her sciences. She was calculating chemical equations in the 9th grade. That being said, though, you couldn't ask her to do them quickly. Flashcards, never. Her brain does not respond that quickly. She would know them, but would take some time to get the answer to pop into her head and out her mouth. Thanks for the thought! I'm in the process of narrowing down some of her difficulties while we are waiting for my other daughter's surgery date at the end of July.

Hi p8d! Looking forward to what your neuro has to say. It's a strange thing, isn't it?!

I'm revisiting a subject that has plagued my daughters for several years and it is the subject of overstimulation. I was reminded, yet again, of this after my youngest went to a church celebration after our morning service was over. We have a fellowship hall that has great acoustics, I guess you would say, but all the sounds of people talking and the movement of the people all about was making her vertigo worse and basically made her brain go to mush. She couldn't carry on a conversation, make decisions, etc. I wasn't able to go, so she went with my aunt who is very attentive to her conditions. I had texted my daughter to ask if she was ready for me to come pick her up. Yes, she was ready. It was fun until it all got to be too much. This is not a panic or anxiety attack. No, this is different. It can produce anxiety if it goes on too long and they don't remove themselves from the situation. Crowded cities are bad, too. Say, Union Square in San Francisco. Yikes!! They have a real problem with sounds. The bass of the music these days just makes their heads start spinning. Visual movement is bad, too. Vibrations. Say, an electric toothbrush. Out of the question. Sounds that make the sounds waves reverberate. They can feel sound waves like crazy. They take a lot of meds to keep their systems calm. Calm also means sedating, though. But, why is it some people with Dysautonomia have this hypersensitivity to their senses? Sight, sound, touch, sometimes smell. Is it too much sympathetic, not enough parasympathetic or the other way around? Any thoughts???

Hi AissaJ! So glad you found Dinet! There is just a wealth of information here, so have fun reading! Just a couple of suggestions that helped my daughters (21 and almost 19) was electrolyte water (oldest drinks 2L of Smartwater and another liter of other fluids), florinef, extra salt (can you say ramen noodles!!) and knowing when to do things and when not. Like, if the weather throws a kink in how you feel, make it a slow day. One thing we've learned is not to push yourself too much. It's ok to do things, don't get me wrong, just do it in moderation. Know your body! : ) That's most important!! When my youngest was really sick with vertigo, the only thing she was eating in abundance was soup. After a while, we started noticing that some of the dizziness was getting better. Didn't know why. So, on with the soup, though. Realized the one thing my oldest WASN'T eating was soup, so we started adding salt tablets (Thermotabs) to her diet (she's not a big fan of soup!). It helped her some, but she's got some extensive spine issues right now (going in for a huge spinal fusion surgery end of July - about 11 vertebrae to be fused!) so we'll see what we are left with after that. Noonan's syndrome, heard of it, but didn't know much. Thanks for the explanation! I enjoy signing, although I'm a little rusty at the moment! Some friends were deaf. Take care and don't hesitate to ask questions here. Tons of knowledgeable people!! p.s. we grow many of our own veges, too! No animals, though!

Even though your daughter's numbers were within normal range, did she happen to get some relief for a little while after? Just curious because my daughter's was just slightly elevated. In most doctor's eyes, not enough to cause her extreme symptoms. After she had this done, however, she was put on a trial dose of prednisone (by a different doctor treating another issue). She took 7 mgs a day for a couple of months. I believe that it was the prednisone that actually helped the headaches to get better. My daughter also had inflammation in both optic nerves and both her optic disks were blurry. Has anyone checked your daughter's eyes for this? It's called papilledema. When the neuro-opthalmologist did a recheck on her eyes after a month, her optic nerves were back to normal and her right optic disk was good. The left was slightly blurry, but much improved. I really think it was the prednisone that reduced all of the inflammation. Anybody ever considered a low-dose prednisone trial? Has she had any imaging done? Any kind of brain and/or cervical MRI? Does she complain about a stiff neck or her head feeling heavy? Your daughter's symptoms sound very much like how my daughter was about a year and a half ago. I am so sorry you are having to deal with this. It's horrible, but hang in there.

I am so sorry that your daughter is so ill! This is awful! What is even more awful is that no one believes you. Believe me, I've got two daughters and we've heard it all! Has anyone ever suggested a lumbar puncture to check her spinal fluid pressure? My daughter had very similar symptoms to yours (she's 21) and she had a lumbar puncture because the doc, a headache specialist, thought she had something called pseudotumor cerebri. They also use the term idiopathic intercranial hypertension. It's very painful and our doctor was concerned that she could lose her sight because it would black out sometimes. Not pass out, but her vision would just black out momentarily. They drained about 25 mls of fluid and, remarkably, she did feel better for a while. We have now discovered that my daughter has cervical medullary syndrome that is caused by her cervical instability, which is caused by Ehlers-Danlos Syndrome. Both my girls have EDS as well as Dysautonomia, POTS, and vertigo. As for the school, can she do her studies at home, a little at a time? We had to homeschool our girls because they have been unwell for most of their lives. The EDS hit early, the POTS around puberty. I hope you can find some answers soon! Btw, welcome to the forum!!

I'm sure I'm a carrier of EDS, maybe even have it, but the only thing I had was the fact that I was flexible. I could do the Chinese splits on a balance beam in high school! Makes me cringe now, though!! Not everybody has raging symptoms all the time.

EDS can be diagnosed by any knowledgeable physician, but a lot of people get a diagnosis from a geneticist. My girls got their diagnosis from a neurologist at Stanford who specializes in Autonomic Disorders. My mom got a diagnosis from an endocrinologist she was seeing. She saw her stretchy skin, even though my mom is 73, she knows what it was supposed to feel like and knew that it was far to stretchy (even for that age). Some rheumatologists (especially in the UK) can diagnose, also. My youngest has trouble with her knee too. It started with one, now it's both. Has braces for both, but they are so weak. Had to climb stairs today (can't take elevator due to vertigo) and now she can hardly stand. Have you been tested for various autoimmune disorders? I know my mom has lupus, scleroderma, Sjogren's, and now they've found she has Dermatomyositis. Wasn't just a guess either, took a skin biopsy and showed textbook clinical symptoms also.