DizzyGirls

Hi Jade! I too am not computer savvy, so frustrating isn't it! I've had some form of shortness of breath since I was a kid. I was a high energy kid, had bad allergies, but other than not being able to catch my breath, I was healthy. FF 35-40 years and I still have shortness of breath at times, but it seems to be getting worse. My daughter's, most likely husband, and most likely myself all have Ehler's Danlos Syndrome. I don't think I have too much in the way of Dysautonomia, but I do have very low bp and my girls have fairly severe Dysautonomia. Some days I just feel like my throat is going to close off and my chest feels heavy. I had a PFT this past summer and it showed that my small airways were constricted. So we are trying some Flovent inhaler to see if it helps. Has helped in the past, but I'm not sure if it's working very well this time. I have an albuterol inhaler, but it doesn't really work. Tried it the other night, though, in desperation, and I think it did help some, but it gave me these weird lung "cramps" (for lack of a better word). Things that I do don't really affect it. Either I have air or I don't. My allergies do affect it some, so I am trying a few days of Zyrtec to see if it improves. Wonder if something like midodrine would help raise my bp so that my lungs got more blood circulation? Don't know. Anyhow, welcome to the forum!

I should check my bp when this is happening! Thanks! It didn't even occur to me. I do have very low blood pressure and nurses are always commenting "is it always this low?" Yes, it is (unless I've stopped by Starbucks earlier! ). This will be interesting. I used to be really fit, too. But since having my girls, some 19 years ago, my body hasn't been the same.

Thanks! Just checked my bottle, and it appears to be just the plain old short acting. So, think it's not working. I just don't want the girls on something that isn't helping. On to something new, I think.

This question is about me and not my 'dizzy girls' I have a real hard time catching my breath sometimes. I've had mild trouble with this since I was a kid, but now, sometimes in the evening it feels like my throat is trying to close off. I can't seem to make it go away. It seems that the more tired I get, the worse it gets, which does stand to reason, but it is starting to give me anxiety when I feel like I can't breathe. I am trying Flovent, NP wants to see if that will help. I also have an albuterol inhaler, but that doesn't usually help. I did try it last night because it was getting bad. I think it might have worked a little bit, but gave my lungs a funny almost crampy feeling. Anyway, does anybody ever have trouble breathing and it not be asthma related? Pretty sure I have EDS along with my girls. Maybe this is part of it?

My daughters have been put on Verapamil by their autonomic doctor. I was just wondering, for those who take it or have tried it, how long does it take to start working? The doctor is hoping it will help with the POTS symptoms, their severe vertigo and my oldest daughter's migraines. Would be nice if it worked for all of those things, although, I'm not holding my breath. So far they are doing ok on it. Nothing to note. No improvement either, though.

Alma, It could cause your vertigo, I would think. But, I've just ran across two articles that talk about the autonomic system (asymmetrical blood flow caused by malfunction of sympathetic/parasympathetic activity) being a cause of vertigo. Which is also probably causing your eye dilation problem! Just a thought...

Have you tried meclizine? It's OTC and might get you through Thanksgiving. Hope you have a happy one even though you aren't feeling well.

Between my daughter and my mom, they have seen 12 different neurologists. Not a one helped my mom, but my daughter's last two have been helpful. The latest one we saw was from Stanford and is an expert in POTS and Ehler's Danlos (that's extremely helpful!) and the previous one is becoming an expert in not only POTS, but the whole aspect of Dysautonomia. He's an up-and-coming one. I would not advise seeing just any neurologist if you have any form of Dysautonomia. Most just don't have a clue. Make sure they are well-versed in Autonomic Disorders or are part of an Autonomic Clinic. Imo It will be a waste of time otherwise.

My daughters were just diagnosed with EDS Type III (Hypermobility Type) a couple of weeks ago by Dr. Jaradeh at Stanford University. Their symptoms plus the fact that he picked up my oldest daughter's leg and said "oh my". He cautioned her to be careful with her joints because she was so hypermobile that they would easily sublux. It took him all of about 5 minutes to put it together. Same for her younger sister. They are 19 and 17 and have had symptoms pretty much all of their lives. They had seen a neurologist at UCSF and a team of geneticists who would never commit to a diagnosis. Dr. Jaradeh (a neurologist who specializes in Autonomic Dysfunction and sees several patients a week with EDS) could tell right away. There is always a difference between a good doctor and a great one. He is one of the "greats".

So, finally got a response from our doctor at Stanford and he is prescribing the girls verapamil. He said it should help their POTS, migraines and vertigo. Hope so! If anybody has any useful information regarding verapamil, side affects, etc. would you mind chiming in? Thank you! Katybug, noticed in your signature line that you take verapamil. How has it helped you? I'm going to go to drugs.com and bump up their current meds with the verapamil to make for certain there are no interactions.

My daughters say that sometimes they do notice the dizziness more when they are sitting still. They've had vertigo for years. But, they also have to be careful and not walk too much as that makes it worse, too.

I was doing some research today and found these two articles about Autonomic Dysfunction being the cause of vertigo. My daughters have been suffering for so long and nobody wants to link Autonomic Dysfunction as a cause of vertigo. I have always had a gut instinct that says my daughters' vertigo was cause by the Autonomic Dysfunction, I just don't have an MD after my name to prove it. Today I found these articles that gives a step by step articulation of what happens when your parasympathetic and sympathetic nervous systems are not in sync with each other. The inner ear is not what is causing the problem nor is it a migraine. I finally found my proof! I am severely electronically challenged, so I'm just going to give you the titles and authors and you can Google them! Autonomic Dysfunction in Patients with Vertigo by Noriaki Takeda Autonomic Related Vertigo by DG Pappas Jr. In a nutshell it is a sympathetic/parasympathetic nervous system and assymetrical blood circulation that causes the vertigo. Treatment is not treating the inner ear, but the Autonomic Nervous System.

My daughters have finished a grueling two weeks of doctoring and testing: a two day trip to Stanford (dr. visit and TTT), a couple of actual 'in town' appointments and then our last, the ENT at UCSF. We went to the ENT to see what to do about my oldest daughter's petrous cyst and the youngest appeared to be missing part of her inner ear anatomy. So, the cyst you don't do anything about, and the lack of anatomy, well, he thinks it might be there, just missed in the 'slice' of MRI. She needs a CT scan just to make sure it's there. The doctor asked if anyone had recommended a CT and wished they would have before we made the trip in. Seriously, the one time I decide I was too tired to question anyone regarding that fact. I thought, 'oh, the MRI must have shown everything, how nice'. Ok, always go with your gut. Even when it's tired. So, it sounds like it will be nothing to worry about, we hope. Those results were good until.......the term 'vertigo' reared it's ugly head. I didn't really want his opinion on it, but it was there in vivid form in my oldest daughter. Poor thing could hardly stand up straight. These car rides are really doing her in. BUT, the doctor was preoccupied with my youngest, whose vertigo has improved a lot from where she was the last time she was at this office (feeding tube, severe vertigo). He harped for the longest time on drinking caffeine and how it was not helping her and only making things worse. And, of course, every time I said something I was wrong. Finally, he left. I hate to tell him, but the youngest one drinks more caffeine and she is doing better than the one that drinks less. AND, she isn't the one with the migraines! What it comes down to, and what I get really frustrated at, is the fact that he hadn't taken their Ehler's Danlos into consideration along with their POTS. My girls actually do well with anything that will constrict their blood vessels, whether it be caffeine or something else. So now, we wait for doc at Stanford to write back and hope for some good meds!

Nymph, That was an interesting article. I just got done reading it and am actually printing it out. I didn't want it to go away!

As I stated above, my girls have had this for a few years now, but as we are all agreeing that we have this problem, has anyone found anything to help? I've been researching madly again and it appears to be something called a hyperactive vestibulo-ocular reflex. How do you even it out? My girls have vertigo constantly, my oldest is starting to decondition. The doctor at Stanford in the Autonomic Clinic could not believe the severity of it. He used the words "debilitating, severe, and handicapping all in one sentence! We know this happens, how does it get fixed? We see an ENT on Monday at UCSF, if I get any good advice, I'll let everybody know (not holding my breath, though).

I can't believe that it's been a week since our Stanford appt. And, yes, they are still trying to recover from the TTT. Sarah, as far as the MRIs and the inner ear things they found, he thought that they wouldn't cause such severe vertigo. So, that, in and of itself, is a relief to know. Gives me some knowledge as to what to say to the ENT. Now, the petrous cyst that my oldest daughter has, might possibly be contributing to her headaches. But, my mom has the same types of headaches and she doesn't have a cyst. So, think it's the old Dysautonomia really wreaking havoc with them. Wish I had more time to absorb more of this medical info I read. Thank you all for your encouraging words and well wishes! Happy Thanksgiving!

My girls have this problem too. Squares, especially black/white contrast, blinds, stripes, halls, malls, stores with busy clothing and carpeting patterns, text on the page of a book. My husband had to change his wardrobe because the girls couldn't stand the prints of his shirts!

Robstah, I was wondering the same. I keep thinking about this and the above posts and wonder.... Your balance is something that we cannot control, so, in my logic, that would be controlled by the Autonomic Nervous System. Sounds plausible. We see an ENT in about a week, so we'll see what they say, but I'm not ready to do anything drastic until the girls have tried some good meds for their POTS. Did they do any of the vestibular testing on you and how did it turn out?

Thank you for your responses! I've been brainstorming since our appt and was wondering if the girls were being treated for their Dysautonomia, if that would settle their vestibular nerve (what the doctor thinks is the problem). Your autonomic nervous system controls everything that we don't, so why wouldn't it stand to reason that it would control this also? They are on Florinef, but that alone isn't helping. Still have lots of questions for the medical staff...hope they are ready for me!

So, we finally made it to Stanford. Five months we have been waiting for this appointment. Can't believe it's over. Thank goodness!! We had to go down a day early because our appointment day started at 9 a.m. We had a very positive experience with Dr. Jaradeh and his PA Irina. He listens, talks, educates, constantly observes. I couldn't believe what I didn't have to point out to him. He noticed my daughter's skin changes and the blood pooling in her feet! On the spot he diagnosed them both with Ehler's Danlos Hypermobility Type, which was great because our previous visit with the geneticists was "our hypothesis is EDS, but...". He looked at my daughter's arms and then moved and picked up one of her legs and said to his PA, "wow, look at this". I always figure when a doctor of his caliber says "wow, look at this", it's important. Told us to be careful with her and possible subluxations, though, that's something we had thought of, just nice it was confirmed. Tilt table test was no fun, but the girls were troopers. Almost passing out, vertigo that was off the charts and, yes, POTS. So, we came away with a mild POTS diagnosis for both, EDS-III for both, and a possible serious vestibular disorder for both (most likely familial). He had never had anybody with vertigo as serious as the girls presented and couldn't imagine how they would have been had they not had their medicine before the testing. One daughter's heart rate went up 30 beats and the other one 40 beats. So, more mild than I had thought, so I guess that's good. Still stumped with the vertigo. Here's a question: I know a lot of you have vertigo with all the things that go with it like not being able to look at busy patterns, aisles, too many people moving, just stimulation in general. Does anyone have vertigo 24/7, and I don't mean lightheadedness, it's true - feeling like you are spinning vertigo and is it progressing? My daughters didn't get better when they were laying down. In fact, the nystagmus that the vertigo produces in the eyes got markedly worse. It was really severe. They are still fighting to get down to baseline today and I am sure it will take a while longer. We didn't leave with any medicine, because we have an upcoming ENT appointment and he didn't want to alter that at all. Was talking about putting one on SSRI's or a beta blocker. They are both already on benzo's and he said that was good. Also learned this (which could explain some things) that the vestibular nerve is located very near the parasympathetic and sympathetic nerves and when the vestibular nerve is irritated, it can stimulate the other two nerves. Interesting, huh?! Anyway, thanks for listening!

We are going to Stanford this week and they require you to be off meds (length of time depends on which meds). I spoke with the nurse there who, in turn, relayed the conversation with the doctor and they made exceptions to several of my girls' meds. I told them that they wouldn't be able to get to the appointment without them. She said "oh, they are really sick". Yes, they are!! I just know that their symptoms show up quite nicely on the meds, so I know how they can get if they don't have them. It's scarry.

My daughters deal with vertigo 24/7. I believe theirs is mostly autonomic in origin. They have some extenuating factors, but I believe that viruses in the past have made theirs worse (not just cold viruses, but stomach, too). That being said, sounds like you are improving with the fluids. Can you drink electrolyte water? I feel so sorry for you. The stomach flu is just awful. Hope you feel better soon!

Katybug, The Floor Gym sounds like a great piece of equipment. My daughters have been trying to do some toning exercises, as those are the only kind they can do now because they can be done in place. They are pretty down most of the time. p8d, I agree with the floor exercises. Because of my daughters' POTS, they can't do anything lying down either. Makes them very dizzy. Because of their EDS they can't do anything that puts too much stress on their already hypermobile joints either. A lot of people swear by yoga, but I know that it's not for my girls. I did hear some good things about Pilates, though, from a friend who has EDS and POTS. Never tried it myself.

I'm not a doctor, and everybody's body is different, that being said, my daughter has had sedation (propofol) three times this year. She has begun to look forward to it as it calms her sympathetic nervous system down. Makes her not as symptomatic for a few days. It's been a positive thing for her. Btw, congrats on your baby! How sweet!

ks42 and Katybug, Thank you so much for your advice! I will keep all of it in mind. I have come to the realizing fact that in order to help them, they may have to lie flat for a bit, maybe they will be able to shorten it some so that they can get their readings, but not send them in to full tilt vertigo. My worry is that they take everything there is available to control it, and when it gets really bad, how will they stop it? I guess I'm just sounding like a worried mom right now. I just know how difficult it is to control. We got an ok already for them to take their meds the morning of the appointment and testing because I told them that there most likely wouldn't be an appointment if they didn't. The nurse then responded with a comment "they aren't able to do much then". I said "no"! Why do you think we are coming all this way? (I didn't tell her that part, but I would have like to have). Something tells me, though, that my youngest will probably pass out from stress before they even explain what they are going to do. May answer some questions, who knows! Thank you!